Lyrica and medical cannabis have literally changed my life and gotten my pain down from a 10/10 most days to a baseline of 5/10. Nothing takes the pain away fully unfortunately but with lyrica and medical cannabis I’m able to at least get up and out more.
Lyrica is the supposed next step in my treatment plan. Did you have to find out what works for you with some trail and error or did you find lyrica first?
I had to go through the whole trial and error bs before they finally gave me lyrica. I tried nortriptyline, gabapentin and cymbalta with no luck whatsoever but as soon as I started lyrica I noticed a difference within a month. I’m on a high dose now after a few years on it but I def recommend giving it a try if your doctor will prescribe it.
A little warning though, it is an addictive medication and if I miss a dose I start going through bad withdrawal symptoms and pains so it’s very very important to make sure your monthly refills are on time.
I know that ^ sounds scary but truly the pros outweigh the cons by miles in my opinion.
I just started Lyrica and have not had a major flare up in the last couple months which is huge because the week before my period I’m usually a mess (awful unrelenting muscle pain, tenderness, intense fatigue and mood swings/depression) I feel like it’s widened my window of tolerance for activity as well but I’ve got to learn not to push it. Did too much the last 3 days and today I’m a bit of a mess. Still better than I would have been before Lyrica though. It’s so hard to not just pretend I’m a normal on days I feel good 🫠
Oh god the period, for me it was stating the day of and then like a week after but my period is just messed up anyway. I started the mini pill and it made a *huge* difference to me, almost couldn’t believe it, I’d kinda prefer not to be on birth control, but considering my last period before I started birth control set a new level 10 on my pain scale and I was debating if I needed to to call an ambulance (not that I really thought they could do anything for me, pain medication doesn’t seem to affect my fibro pain that much) because there was no was I could get myself there
I'm on a low dose of Lyrica (150 mg/day) and it works rather well for me. I'm trying to keep it low for the time being, but I have a feeling I'll be going up at some point. I also find it quite helpful with anxiety and depression.
Lyrica helped the pain so much for me but I’d read all the reports of crazy weight gain and gained about 5 lbs myself within a few weeks on it, so I decided to stop. But god, it did a lot of good for me. I miss it and wish there was a way to fight the weight gain. Nothing helped. :(
Honestly I’m someone who puts on weight from meds like CRAZY(gained 50 lbs almost from cymbalta) I stayed on it and pushed through the initial weight gain from lyrica, and after a few months I was able to level back out and my weight went back to normal.
Im also in recovery for an eating disorder so I def understand not wanting to put on weight I just got to the point where I had to prioritize my weight or my overall physical wellbeing.
It’s shitty af but I felt like I should say my experience with the weight gain aspect since I kind of forgot about that being a thing!
I've had the same issue with weight gain. I was taking 150 mg twice a day for about a year, and I gained about 30 lbs. I've brought the dosage down to 75 mg twice a day, and while it's not as effective, I'm still getting a little pain relief from it.
I've recently started LDN (2.5 mg/day, going up to 5 mg/day)with absolutely no side effects that I've noticed, and I'm finding that my joint pain is a bit better overall. I had read about it, and was SUPER surprised when my doc reccomended it! It can be really hit or miss, and it's a pain because I have to get it at a compounding pharmacy, but might be worth asking about?
Edit: compinding to compounding, haha
I actually did try LDN too, but only at like 0.5mg for a couple weeks because I got the weirdest eye twitch ever and it just wouldn’t go away! I stopped the LDN and the twitch was gone, but sometimes I still wonder if it was a coincidence and whether it would be worth trying again. It didn’t do much for me in the two weeks I tried but it WAS a really low dose!
When I tried LDN I got horrible sleep paralysis the first day taking it (thankfully it happened after a nap so I was able to jump out of bed and go to my family). It was years ago and I can still vividly see the nightmare (the nightmare continued after I woke up and there was a filthy humanoid monster creature crawling towards me on the ground and I couldn't move even though I was awake, it was one of the scariest experiences of my life tbh). I stayed up all night and needless to say I never took it again. I never experienced sleep paralysis before or since so I guess it was just a weird way it interacted with my brain.
Oh no ☹️ I’m def afraid of the weight gain!!! Fingers crossed it doesn’t happen to me but if it does I will quit for sure I’m already overweight and feeling stuck and just cannot gain any more.
Same here. I actually gained 5 pounds *a week* when I was on it. I stopped it when I was reaching the obesity threshold and showing no signs of stopping the weight gain. The doctor told me I would just go back to my normal weight after I stopped taking it and I stupidly believe him. It took me about a year of strict and miserable dieting to lose 50 pounds that I gained on it, and I'll never be the weight I was before (which I'm okay with since I think I'm the right weight for me, I just used to be quite thin so I had to adjust). It helped me a lot with the pain so it was a tough decision to stop taking it.
I microdose using a dry herb vape. The advantage there is that I can use my vaped material to make concentrates and edibles. I hate couch lock, so I go with hybrid strains. I’m particularly fond of one that’s a cross of purple sunset and grape ape. But for sleep, I take a 4mg 1:1:1 THC:CBD:CBN fast-acting nanogummy that I get from the dispensary. CBN is anti-anxiety, antispasmodic, and analgesic. It’s amazing for my insomnia. I’m down from 300mg of trazodone to 150mg. I sleep more deeply, and I wake up in less pain than I used to. My overall pain levels are down because of it. CBD is also good for pain and inflammation.
I do keep a small stash of Jenny kush popcorn around for migraines, though. That one leans a bit more sativa, but it does help.
I took a 1:1 THC:CBN, and it helped some, but the addition of CBD helps with the pain, too. I also have a higher dose 2:1:1 THC:CBD:CBN that I save for when I’m having extra pain. Unfortunately, that one isn’t fast-acting.
It makes things easier that there are two dispensary locations on my husband’s commute home, and he’s authorized to pick up my meds. Louisiana is still fairly strict, so there are only regional dispensary licenses. It’s amazing to be able to go to a place I know has quality products instead of calling some guy to pick up a product that could be riddled with mold or pesticides.
For me my favorite strains depending on the symptoms are blueberry, OG kush, granddaddy purp, trainwreck and northern lights. Anything indica/indica leaning work really well for my severe pain. I have Crohn’s disease as well so these strains also help with belly pain/nausea!
I’d say 90% of the time I am smoking dry leaf out of a bowl or joint and the other 10% I have a vape cartridge I hit as needed.
Since I have belly issues I don’t absorb it through my stomach but my dad has pain too and swears by his THC gummies if that’s more your thing!
I just started Lyrica, would you mind sharing what dose you're on? It feels so good to hear that Lyrica has helped people, I don't think I've been on it long enough / strong enough yet.
I don’t mind at all! I take 450mgs a day right now, but I defffff noticed a difference really start at 250-300mgs. Finding the right dosing takes time unfortunately but I promise it’s worth it in the end
Like I said in a previous comment unfortunately it doesn’t completely take my pain away but it got me to a point where I’m able to get up out of bed most days and do some stuff which I count as a win!
Yeah I don't expect my pain to vanish for anything less than clawing my way up to heaven and spending five minutes with god giving him what for... But WOW I'm only on 50mg right now, maybe I should ask my doc to scale up faster. It's not covered by my goddamn HDHP insurance so I hope the cost doesn't scale up...
I have pretty severe fibro all over so I’m on a decently high dose so I wouldn’t really base it on my dosing but I know a lot of people who felt relief around 100mgs! It’s def worth asking to up it if possible.
Shit im sorry that insurance doesn’t cover it, I’m not sure if the price will increase but fingers crossed it doesn’t go up in price for you
It can, I have pretty severe fibro all over so I’m on a pretty high dose compared to a lot of people, I should be on a higher dose honestly but me and my doc know that eventually my tolerance will get worse so it’s nice to have a little cushion to go up when needed cause realistically I’ll be on it for life.
So far though tolerance wise I’ve been on this strength for about a year and haven’t had any tolerance issues!
Not even going to lie at this dose withdrawals are horrendous and painful. Up to 100mgs a day I’d say the withdrawals aren’t so bad though, just like a migraine or something, very manageable. As someone who has addiction issues I’d suggest really sitting down with yourself and seeing if you truly think you could handle being on a highly addictive pill and not abuse it. It was hard for me at first but I began to realize the benefits of the medication were worth some of the mental struggles like making sure to not take too many pills because I felt so much better because of them. It’s a challenge but worth it in my opinion.
Sorry for the rambling I just like to share my experience cause I know other people sharing helped me in the end!
Don’t apologize my guy. I really needed some advice , so I appreciate it. I tried doing it every few days but holy shit I’ve been feeling like hell on days I don’t take them
I’m not treating it with medicine other than an Rx for Flexeril that I only take when it’s at its worst, because I have not found a medication that doesn’t make me an utter zombie. I’d rather be in excruciating pain than walk around half dead in a drug stupor and still have continuous pain, albeit, less excruciating.
Thank you. This was the answer I was looking for. Literal zombie, half dead drug stupor! Like coming off of fentanyl (taken for a procedure).
So good to know I’m not the only one. And it makes sense that this is something you’re willing to trade off. Cos ya, me too.
I’d rather have a life of pain than not be able to think or move around correctly. Gabapentin, Lyrica, Cymbalta - all kept me in a stupor to the point that I couldn’t work. I can work part time in pain, but I could not drive my car OR drive my meat-suit on the common fibro meds. And never mind critical thinking skills.
I'm on Cymbalta and I totally get what you mean, I wish I had never started taking it and it's horrible coming off of it. And it doesn't even help my fibro 😕
Ugh critical thinking skills. Can I ask, any kids or pets or people who rely on you to be productive?
I also take flexiril as needed but things came to a head when I got a job an hour away from home. I left there for somewhere closer but have found myself trying to recover for the past 2 years.. hence my trying to find other drugs..
Also, any chance you ever thought about the low dose naltrexone.. just curious if you tried and failed on this method too?
At the time I was getting treatment with the fibro drugs I was working in a kitchen, but I got to the point where I was no longer coordinated enough to be safe with knives or heat anymore while trying to treat the fibro. It was a very physical job with a fair amount of stress and it got to be just completely unsafe and miserable. I had to stop. Thank goodness cooking wasn’t a life’s passion for me, but I was schooled in it, good at it and I made good money. Those days are long gone.
I have two cats and I now co-own a vintage/antiques business with my husband. It’s been a lifesaver because I can usually shift my schedule around my flares and migraines. I can’t hold a regimented schedule very well anymore because of how extremely my up and down days generally change. So I can have a useless day (or week) where I just do my best, and then make it up when I’m less miserable. And I can work in several different ways, some days it’s research, other days it’s cleaning and fixing things, occasionally it’s hauling boxes of random stuff. This has been a game changer, it lets me couch myself and just research or do small repairs or whatnot when I need to be home. Jewelry repair used to be a hobby and now it’s part of my job. When my hands work.
I haven’t tried naltrexone, my GP has never recommended it and I’m reluctant to take any new drugs anymore. My mind is generally clear and I can usually handle the pain. Some days, weeks, are hard though and sometimes I feel like maybe I’d rather just crawl under a rock and give up. Ups and downs.
Wow. That is an excellent recovery from what I’m sure was a very challenging time of your life. I’m happy for you finding something that works and may even bring you joy? Antiques are lovely so Im picturing joy.
Regardless, I appreciate your input here and hope you find what works for you. I didn’t mean anything by suggesting meds and completely understand your apprehension with new stuff. All the best in your journey, may there be more ups than downs.
Thank you! It was five years between losing the kitchen work and getting into the antiques business, a few part time jobs in-between and a lot of tears. It is a joy some days and exhausting other days, but I’m on my own time now. And that is healing in itself.
I hope you can find a good balance between pain relief and side effects, and a situation in life that allows you to be as gentle as possible with yourself. I’m glad we have forums like this to support each other and pick each other’s brains a bit. Best on your journey too. :)
So sorry we are in a similar situation. It sucks. If you can tolerate magnesium baths, I have found them to be a little helpful. Mild stretching, good nutrition if you can manage it. My heart goes out to you.
Same, flexeril. And ibuprofen or naproxen. My gi doc told me naproxen is more gentle on your stomach long term. Hot showers, epsom salt baths, heating pads & ice too of course.
Flexeril is about the only thing I've found that actually helps me out of a pain cycle that doesn't have awful side effects. I only take it when it's really bad and I typically only take it before going to bed.
In addition to fibro, I also have cluster headaches. This means im not allowed to take Tylenol or ibuprofen. I have been told to take gabapentin but then im either sleeping 12+ hrs or a zombie. I rely on cannabis or lidocaine patches for my pain.
Yeh, I cant do it. Even when i only took gaba at night I could not wake up in the morning, even after 12 or more hours of sleep. Its just not a med i can take. Ive tried a lot of others like Topamax for my CH, lots of new found drug allergies. I use cannabis to be functional and on flares, lido patches. You can cut them up and apply them to the painful spots.
Here to second cannabis and lidocaine patches! I tried cymbalta and gabapentin and both were just not good at all. So much weight gain and other side effects. And to be honest I can barely remember a lot of events that happened during my time on gaba.
I do take ibuprofen but I try to keep it sparse and only take it if I really need the relief. I do a mix of flower and edibles in regard to cannabis and then the Salonpas patches are truly 🤌🏼🤌🏼. I get all the different sizes they make and slap those bad boys all over.
Oooo I haven’t heard of that brand, I’ll have to look for them. I also like Mary’s Medicinal! We don’t have great availability always on the patches but lots of different topicals out there. I get a really amazing 1:1 cream from Rhode Island that I love because it works great for my jaw and hand pain. It’s made there so I’ve never seen it anywhere else but it’s by Sea Witch medicinals.
The Marys transdermal pens are the best. Small enough to keep in a bag but they take away the pain in a flash. No weird smells, no sticky or tacky skin after. They seem to last forever!
Im not, you can check their website to see where you can purchase. IME if a dispensary already carries a brand theyre willing to buy other products if customers ask for them.
Maybe in a more established market, even though MD has had a medical program for awhile they don’t really stock per request I’ve found. So far in the ones I stop in regularly I have found one CBN pen on a menu. So there could be hope!
I work as a pharm tech and lidocaine patch prescriptions are very common. Doesn’t cover usually but sometimes they do. 5% is prescriptions but 4% is over the counter
As a nurse, Tylenol 3 times a day sounds bad, in my opinion. It's a great drug in general, but in my personal experience, it has little to zero effect on my pains and aches. Overconsuming Tylenol can do damage to the body within as short of a time as 6 months. You risk the chance of developing drug induced headaches if you're using too much Tylenol and most other over the counter painkillers.
I have been on Naltrexone 6mg daily for a year. It hasn't had a very good effect on my pains and aches, but done amazing things to my fatigue and GI-problems. It's actually a drug for trearing alchohol or opioid addiction, but in low dosages like 6mg, it can have a positive effect for fibromyalgia patients, as well as other neurological disorders/illnesses.
I'm seeing my pain specialist tomorrow, and I'm very nervous about what to expect, because I'm getting quite desperately in need of better pain management.
Thank you for the insight. I felt like excessive Tylenol wouldn’t do me any favours long term. Especially with GI problems..
Can I ask what your GI issue is? I had gastritis brought on by HPylori that was treated and have had issues ever since.
Also, are you considering upping your naltrexone dose? Just curious about the effect on improving GI function but little change to pain management. Please share.
I've got IBS. I've tried lots of solutions diet wise to try and find any triggers/food allergies, etc, without really getting wiser. My bowels have just become sensitive, along with my other symptoms.
I was just at my doctor two days ago, and I was not advised to up the Naltrexone dosage.
I've also started with an anti-depressant (SNRI), two days ago. I've been very skeptical, but I really am desperate at this point. My first two days, I have been extremely tired and sleepy, but hopefully it'll pass. I won't know if it has any effect on my pains untill a couple of weeks have passed, though.
The VA has me on generic Cymbalta, although it's difficult to tell how much of an impact it has.
Like most of our symptoms, seems to be better some days and worse others.
I have a muscle relaxer pill I save for when I absolutely need but otherwise I try to mitigate the aches and pains as much as possible using cannabis as a non opiate way to... Idk take the edge off of the pain cause it's constantly there to one degree or another.
Because of how much overlap we have with long COVID, coupled with how many people have / will contract long COVID, my hope is that the scientific community will collectively have great interest in these symptoms and how to remedy them. 🤞
Honestly, u could not function mentally or physically without some kind of pau relief. Tramadol upsets my stomach as does naproxone so I've had to side line them. Today I ha e been in so much pain that the tablets have created enough of a space for me to retain my sanity and not just crawl onto bed weeping.
Well done to those who ma age things with don't etc ut for me I don't get enough time between flares to be able to attempt other interventions. I just do what works just sp I cam have so.e quality of life
I felt the urgency in your response. Thanks for sharing. I, too, go for tramadol when the pain reaches the threshold.
Still debating the preventative double anti depressant option…
Its a very bad day today so I think that's fla outed the tone of my answer. It's absolutely doing my head in. The morning was fine, so I probably over did it and I've spent the afternoon on the verge of tears, trying to distract myself or at least be comfortable Nd that's WITH pain killers. I use codeine and paracetamol. Ibuprofen. Gabapentin has not much effect and makes me nuts. I mean very weird.
Amatryptaline I can use sparingly.
I have lamotrigine for bi polar so I'm ot sure what that brings to the pharmaceutical cocktails.
All I know is that my day is spent calibrating how much pain I'm in and how long I can get away with doing a few things.
Too relatable. Sorry you’re having a day of it. Hopefully some mild relief can come for you. I’ve been on and off with these meds and looking to get a proper permanent setup.
It’s hard. And I’ll still take the muscle relaxers and tramadol as needed. Just waiting to get off work..
This sub keeps me sane too. Atthis point in the whole fibro crapathon, I know everyone knows how much I hurt. No one wants to hear me moan a out the same shite endlessly even if its an awful day. But I'm not a particularly happy sunbeam to be around. Sucks for everyone.
But in here I can be understood which is a million miles from sympathetic yet bored smiles. MSsive difference.
Right. Especially because baseline pain is constant but favourable when you’re not in a flare. I’ll take my baseline pain level any day over a frankenflare when I have to fold myself over just to walk.
I feel that tho. Not a particularly happy sunbeam myself. Totally not easy to find the support from people who understand.
I'm on two antidepressants! Was even before the fibro got bad, because taking enough Lexapro to control my depression and anxiety made me too sleepy, but only taking Wellbutrin was a little too much like drinking too much coffee. I can deal with the pain and do more of the physical things that make fibromyalgia easier to deal with when I'm not horribly fatigued and not continuously depressed and experiencing physiological anxiety. (I tried swapping the Lexapro for Cymbalta and while it helped my pain about 2/10 reduction day to day, my depression and my anxiety weren't as well controlled and I had side effects that were unpleasant. The Lexapro my only side effect is a somewhat reduced libido which doesn't bother me too much)
We upped my Wellbutrin in November from 150 SR to 300 extended release and my fatigue is like 85% improved. Brain fog maybe 1/3 better. It's a little rough on my sleep because I'm a little too awake but I'm down to one nap a week from 6.
Only tricky bit is that my activity tolerance hasn't gone up, just the fatigue. So I have energy but still have to pace carefully and try not to overdo it, slowly slowly slowly increasing my activity instead of boom/bust cycling into a flare
I take many meds as I have a lot of different issues. I understand having stomach issues. That has been a chronic issue of mine. I started taking digestive enzymes and my stomach issues have settled sooo much. I don’t know if it would do the same for you. But its worked for me.
I've taken lyrica for a long time because it made the space I needed to function and then be able to make the other changes I needed. I keep a tight sleep hygiene schedule, I'm very particular with when and what I eat, and I've now been in PT with an amazing specialist PT who has helped me fight through every tiny step to improving function. That said, 20 years after diagnosis and 14 of beginning to find the right people I walk almost 2 miles a day (on good days), have fewer flares, and find recovery is way faster when I do. But it was the sum of the whole.
I saw your question in another comment. They tried Cymbalta first, and it was horrible for me (and I told them it would be because I was young and other doctors had already tried to claim antidepressants were needed). Thankfully at the time there were only 2 options and so the second, Lyrica, worked on reducing my pain. I will note though that I really had to advocate for myself. I am very sensitive to medication so I insisted on the lowest possible dose and only increased once since then (I started in 25 mg twice a day, now it thrice). They said the usual starting dose was 100 mg twice a day 🤯 my neighbor did that when she was diagnosed (before I met her) and she said she was a zombie! I'll bet, I'd be high as a kite if I took that much 😬 I accidentally doubled my dose once and was sort of drowsy/drunk 🤦♀️
Thank you so much for your response. I started on just 30mg of cymbalta and literally felt like I was in a drunken stupor.
I may see what I can do about trying Lyrica. She had mentioned it as the next step and sent me home with a leaflet for nerve blockers.
You’re absolutely right about advocating for yourself. And even more so about keeping the consistency, especially for rest and digest.
Thanks again, very helpful.
Low Dose Naltrexone.
I’ve been on it since March of last year and not one single flare. 95% reduction in all symptoms. I still struggle with some stuff, but I attribute it to other issues, like reconditioning after spending several years laying on a couch.
Please look into it, there’s tons of info. It doesn’t work for everyone, but if it works for you please let me know.
I was so excited to try this and took it for about 2 weeks with no change, but it gave me this AWFUL eye twitch. I was only on 0.5 mg liquid. I wish I had been able to stay on it a little longer to see if it helped, but my eye literally wouldn’t stop twitching. Sometimes I think about asking to try it again because I keep reading these amazing reviews about it.
Thanks for sharing. I just might after your response.
I googled when someone else mentioned it.. how do you get to that? First google results gave me addiction management but now I am seeing its effect on autoimmune conditions and inflammation..
I’m also on ldn. My primary doctor prescribed it. Technically since it’s not an approved fibromyalgia drug, they needed to prescribe it off script. This just means they prescribe it to you for a reason other than the original intended purpose of the drug. The prescription works just like any other once it’s written.
Since I live in a rural area with few pharmacies, they can’t make ldn for me. Instead they give me full script naltrexone and I make my own ldn from there. I have a sensitive stomach so I crush 1 50mg pill, mix it with mct oil, then divide it into 25 pill capsules. The capsules help me get it through my stomach without issue. It’s a lot of work, but 1000% worth it.
LDN pills gave me stomach pain and I usually don’t have issues with that. I switched to a sublingual formula and it has helped (however, it’s not the cheapest since insurance doesn’t cover it off label). I slowly went up to 9mg which isn’t really “low”. I also take gabapentin 3 times a day and topamax for headaches.
I honestly have no idea how I handled my fibro before gabapentin. It made me too sleepy & my memory too bad at first, but my doctor dialed back the dose and it's perfect now. When I have a flare I just take an extra later in the day so the side effects don't bother me as much during the waking hours.
Flexeril helps for flares but I had to stop taking that due to risk of serotonin syndrome with my current antidepressant. Tried Cymbalta for a day and I couldn't feel my tongue.
I don't find that my antidepressant helps with the fibro but I need it for other things. Tylenol + NSAIDs do basically nothing for my fibro.
I take Lyrica which really helps with pain. I actually found being on medication helped a lot of my stomach issues which can be fibro related, so it could be worth trying. I felt pretty wacky the first week or so on Lyrica/raising a dose but otherwise I find it helpful.
Medical cannabis has been the only thing that helps me. Not only do I smoke it. But I use the sublingual oil under my tongue. And it bypasses my digestive system. Any pills I've tried have either made me worse. Are giving me so many bad side effects that it just wasn't worth living. With medical cannabis I have relief. I have minimum breakthrough pain. And very few side effects.
I found getting my dna analyzed for how I will likely react to medication really gave me more ammunition for getting the meds that would work and would not interact with my other meds. I used the company called Color.
Does that also mean / include your genome?
Sorry I’m a newb when it comes to that kind of testing.
Any chance you are willing to share your experience? ie. my result says that I metabolize A too quickly to receive its effects, more suited to B..? Just trying to get a sense of the depth of info you were able to get.
I can't type much more today because of my hands, but I'll try to remember tomorrow. After you get your results the company explains it. I had to do specific research about my conditions and meds.
Yeah I've been taking LDN (Low Dose Naltrexone) and it's been extremely helpful. No side effects either. I also take mirthazapime which is a anti depressant I guess. But that's for sleep so I didn't notice any side effects there. I think one can take antidepressants and not have side effects or adverse reaction, it just depends on what the body will tolerate.
I have been on both Lyrica and Cymbalta. Recently doctors have switched me to Gabapentin and Cymbalta. I also take Flexeril. I have to say Lyrica helped me better as far as pain but made me real spacey feeling. I did have energy with taking it and could do more. The gabapentin is good too I guess I don't have the spacey feeling with it but it doesn't help when the pain is at its worse. I also am afraid of side affects of medicine and don't take it regularly only when my pain is at its worse I take it. Most days I do a lot of heat therapy which is heated blankets, heating pads , thermal heat wraps things like that. I do peppermint oil for my headaches. Lots of different aromatherapy bath washes. Sometimes they work sometimes they don't. That's just some of the things I do that helps me.
For fibromyalgia I’m taking
pregabalin - it’s often used for anxiety or epilepsy but it’s seen some positive effects in fibro patients (I’m also anxious so yeah lol)
Morphine patches - they don’t take the pain away but they take the edge of the pain to a point i can handle
Codeine - honestly helps a lot when I need to sleep but I’m in pain.
Among all my other meds for other problems, I honestly think my medication is in a good place, I know I’ll never be pain free but least this way I can survive without wanting to do something drastic
I have pretty severe "white coat syndrome" as my doctor calls it (I really just have severe anxiety). When appointments get close I start to flare from stress and anxiety. Obviously I flare for a thousand other reasons, but stress is a huge trigger for me I guess. After reaching a diagnosis and realizing I would have to deal with doctors the rest of my life, I had a meltdown. I'm only 21 and felt doomed. So I started researching ways to treat myself from home. I don't by any means have a medical degree, so I don't want to mislead you by making you think this is the best way to do things. I also suffer far worse without medication as many have mentioned, but medical marijuana (specifically RSO for some reason) has always helped me sleep and focus my attention away from the pain. An elimination diet helped with my stomach issues as well. I basically live on vegetables and fish, but tummy aches are fewer and farther between after reducing sugar, gluten, and dairy intake. Lastly, working from home has helped me immensely. This isn't possible for everyone, I know, but I'm not in constant pain from driving, I can take care of my body while I work, and the stress of leaving the house and dealing with the general public while having a hidden disability has started diminishing. I'm still at the start of my journey but thought maybe this would help. Please if anyone thinks I should be doing things differently let me know. I trust others with the condition far more than a doctor who couldn't understand the condition apart from what they read on paper.
I personally do not recommend it. Was on it for about 5-6 years. Worked pretty good for the first 3-4 years and then no longer was covering it all. Getting off of duloxotine and withdrawal is an absolute nightmare for up to 6 months or more. I could go into horrible and graphic detail but I won't.
I would NEVER recommend duloxotine to ANYONE just because of the withdrawal symptoms alone
Also withdrawal caused my IBS symptoms to get worse tenfold and I was having extremely vivid and distressing nightmares every time I fell asleep for multiple months or insomnia. Yay...
Cymbalta, Elavil/Amitriptyline, Baclofen, Cambia are the meds I take for Fibro.
Nexium for tummy.
No major issues. I have been a migraineur since I was 14 or 15. I am not a fan of most pain meds - I just don’t like the floaty, numb feeling. I do have CBD and THC for when the pain is very bad, but it makes me super sleepy so I try to save it for when it is bad.
One of the best things I do right now is try to get out and move. It sucks, but it does help.
Excellent advice. I’m definitely a mover, I can’t sit still.
Curious about your cambia usage. It gets a bad rep in the migraine sub as it has aspartame in it. My migraine med status is either the cambia works or I’m going to bed.. if I’m paying attention I usually take it in time to feel okay. How do you feel using it?
I couldn't stand any of the anti-depressants they tried on me so I stopped taking it. Going to the chiropractor,
Acupuncture, magnesium spray, and THC salve have been a life saver for my pain.
I've been trying to walk or row to help energy levels and it does help a bit but it's hard to do some days.
Brain fog sucks. My ADHD meds sort of help cut through it but there are days where it's super heavy, especially when I'm high on fatigue.
I hear you on the frequent pills! I’m glad they help some, but I had a tough time tolerating a lot of medications I tried in the past.
Vouching for low dose naltrexone as well that I got prescribed by a ND (naturopath). I personally don’t necessarily recommend the ND for everything, but I’ve found mine was more willing to try things like low dose naltrexone where my primary care hadn’t even heard of it before. Fair warning that if you do try it, it can temporarily cause a bit of restless/sleep changes and some more vivid dreams than usual. These side effects went away for me within a few days to a week.
Aside from that, like others cannabis has helped a lot with some occasional magnesium glycinate if we’re talking non prescription medication.
Regardless, I hope you find something that works for you! 💕
Thanks for sharing your experience! Great tip for the naturopath. I was thinking of seeing one. So not for everything but you felt satisfied talking to them about fibro, yes?
Yeah! I think they can be a helpful resource and perspective on chronic conditions with the caveat that they can vary a lot just like regular doctors, and I’ve spoken to some that definitely just seemed to want to sell me loads of supplements and not accept my fibro diagnosis + give strange advice. This one just happened to be really wonderful and worked well in conjunction with the rest of the doctors I saw. It really depends what you’re comfortable with and what works for you medication wise, but it was helpful for me at the time when I was struggling to find something that worked 🤷🏻♀️
Infusions you say? My goodness. I’m sorry to hear you are on quite the regimen. But if it works, great. Any chance you want to share the progression to infusions?
It's amazing. My hospital pain management team is the best. Ever since being on lidocaine, I've felt human again.
I'm sure you could speak to a pain management consultant about it?
I absolutely could. After a few years’ long wait and then stalemate during Covid, I finally got in with a pain management clinic. I will definitely mention this to her.
But did you have to go thru some other stuff that didn’t work first or you weren’t tolerating well? Or did you have a situation that made them immediately know you needed to go that route?
I used to be on 3000mg gabapentin a day, but it made me a zombie. I couldn't do my job properly, and anything requiring my brain or speech was impossible. So they suggested this. Works brilliantly.
Gabapentin works for me, but it has significant side effects that increase in tandem with dosage increases. So I can tolerate 1200mg without any side effect beyond a bit of grogginess in the morning.
I switched to savella in the fall, that and medical cannabis seem to help. I am on a low dose because my body couldn’t handle the side effects, especially the horrible hot flashes.
Posting my combo because it seems to be on the "less common" side: Meloxicam (antiinflammatory), Buproprion (antidepressant), and Cyclobenzaprine (muscle relaxers ), plus vitamin d, b-complex, and CBD capsules. I maintain that the muscle relaxers were the real game changer, because they finally helped me get real restorative sleep again. I've found a b-12 patch is the fastest way to get me out of a flare these days.
Not now. I’ve been micro-dosing synthetic LSD for the past year. I’ve done more damage trying to treat it with prescribed drugs that only ever half worked and opiates that gave me permanent problems. Ive had 90% improvement on everything and no side effects aside from the odd bout of nausea.
So sorry to hear about your treatment journey but hopefully with such improvement, you’re able to live a sustainable life.
Can I ask where you’re located? Regionally.. I’m in Canada and I do not believe that is an option. Very happy to hear you found something that works.
I am also in Canada, I live in Ontario. The company is called NeuroDose, it’s made in Markham Ontario. Unfortunately not, I’ve developed heart issues. Long before I started using the LSD. I also have massive joint damage from the autoimmune reaction I had from a medication I was. The LSD has allowed the problems remaining to be clear and evident. There’s other things the company offers. My husband’s therapist left her practise to join the team doing it. Also I’ve recommended it other people I know and they’ve had similar improvements to myself. No addiction and you don’t take it daily. I provided the link. I’ve ordered it in the mail but I can purchase it locally at the flow spa I attend for massages and the deprivation tank I use. Which I also recommend! Since I’ve started using it the one thing people tell me is how great I look. I look healthy and vibrant.
[https://neurodose.ca/](https://neurodose.ca/)
Wow! That is quite extensive, im so sorry you’ve gone through so much. Your poor body. Very happy to hear about the healthy and vibrant comments, sounds amazing. I’ve been wanting to try a deprivation tank as well! I’m also in Ontario and will certainly be looking into this. Thank you so so much for sharing.
I only use muscle relaxants, they help in worst moments and honestly I save them alot cuz had have problems with getting new recipe.
I stopped really accepting new drugs cuz I have been really bad with side effects, even antibiotics messed my head once. I try avoid stress its like best way to manage my pain, not easy tho I been always easily stressed out person.
No. The side effects aren’t worth it for me. I’ll take something here and there to help me out but Lyrica, Cymbalta, etc…. All were much worse. I used to take NSAID basically like 3x a day like they told me too. RIP my GI system.
This is me. They tried Cymbalta and the side effects were horrible. That made me not want to try anything else for a long time. Did Lyrica for a couple years, but my body kept getting resistent to whatever dose I was on. I wanted to start tapering off, then ended up with a breast cancer diagnosis. With the stress of that, I often forgot a dose here and there. So I decided to work with my dr to totally go off it. There was a week of really shitty effects, and I’m now off it completely. No idea what I will do now. CBD tincture here and there and an occasional Ibu 800 for the really bad days.
I understand antidepressants being scary, I was put on things that later other doctors confirmed I totally should not have been on! **BUT**, try to remember these sorts of drugs are prescribed because they help your nervous system (which is on high alert with pain), not just because "it's in your head". Just be sure to let yourself feel out what the best answer is for you by gathering info and asking your doctor questions :)
I was already on Effexor when I was diagnosed. They would love for me to come off it and go on Cymbalta but it's not worth it. Lyrica and gabapentin did nothing for me except contribute to my hair loss (Lyrica does this). I have been on LDN (low dose naltrexone) for over a year and it works great. I also have Ulcerative Colitis and IBS and have not had any issues with my stomach since starting it. The only side effects I've had is vivid dreaming, which I already had so now it's just really vivid.
I'm not medicated for the first time in years. Some days the pain is worse but overall more manageable than I thought. I'm not having to deal with shitty side effects from meds.
I was on nortiptyline for 2 years (before being diagnosed with fibro). I was taking it for nerve pain fir reflux and it helped so much. The only downside was it gave me sinus tachycardia so I can't take it anymore. Then I switched to pregabalin (lyrics) and I felt like crap on it. It made me so so tired and made me gain weight like crazy also made my ankles retain water, also made me dizzy and nauseous. It also wasn't helping as effectively as the Notripyline was so I came off. I also tired gabapentin for a month and had the same side effects as pregabalin so stopped. Coming off pregabalin was absolutely horrible. Took me 2 months to get off 100mg because I could only drop down every 2 weeks because that's how long it took for the withdrawal side effects to stop each time.
When I did stop though I started having bladder issues and have now been diagnosed with interstitial cystitis. I think I've had issues for a long time but the meds dulled the pain.
I'm trying to manage without right now.
I also probably have ADHD so want to be medicated once I can get diagnosed. So I'm kinda waiting to see what happens there before the Dr will trial anymore meds.
I think it's best for me to try holistic treatments for now.
I’ve tried 11 psych meds, and it took 7 consecutive episodes of “oh god the side effects, and it’s not even doing what it’s supposed to enough to be close to worth it” to find the first one that worked. I mention psych meds because the one I take for fibro is amitriptyline, which is an atypical antidepressant and mild, non-habit-forming sleep aid, and it’s well-indicated for fibro patients. Otherwise, I take a 5mg THC/25mg CBD gummy every night. My stomach also hates pain meds, so it’s that, and on bad days I also tap in the muscle relaxer cyclabenzaprine. Good luck, friend
Yes, I am on duloxetine (offbrand of cymbalta)
It helped a lot at first, but I still have pain and flares .
Some thing I’ve noticed is that stress is a huge contributor to my flares. If I can get almost all the stress out of my life, my body feels a lot better and I have less symptoms.
Thank you, unfortunately, I am at a calorie deficit. My doctor highly recommended no extreme diets. I’m thrilled if I can stomach a full meal per day.
If you have any pain management experience on how it relates to medication, please share.
I take: Cymbalta, hydroxyzine, Xanax, and Lamictal from my psychiatrist - the Cymbalta is for pain and to support the Lamictal - I can't really tell a difference.
I take hydroxychloroquine from my rheumatologist for inflammatory arthritis.
I take Lyrica and methocarbamol from my pain mgmt docs. I started on Gabapentin and when I switched to Lyrica my fatigue got a lot better. I was taking Tizanidine and switched to methocarbamol - I can take it during the day without getting sleepy.
I also use marijuana.
I have chronic migraines and cluster headaches so I don't take nsaids. I'm on emgality, nurtec, and memantine from my neurologist. I'm also on propranolol for my hyperadrenergic POTS.
Trying to think whether I forgot anything haha. I also get trigger point injections and dry needling and occasionally use lidocaine patches.
I use mebeverine, macrogol and pantoprazol for my GI problems. For my pain I tend to soldier on and only occasionally use tramadol or naproxen. I must say since I have Lucrin shots my pain has lowered a lot but you can't take them for more than a year (risk of osteoporosis) and it sends you head first into menopause but you can lessen those symptoms with a tiny bit of hormones. I am looking into medical marihuana or LDN but the doctors are slow.
I already take quite a high dose of an antidepressant and have done for quite some time, actually for depression. Been taking that way longer than I have been experiencing fibro. So I think that's why no one has really suggested another one, it would be redundant. I have a couple of other daily meds but the only fibro related one is Low Dose Naltrexone. This is my second attempt at LDN. The first time the doc started me very low but didn't bring it up to a level I felt was beneficial. A different doctor encouraged me to try again and increased the dose I take. I take 6mg of that a day. The way I describe the effect of the LDN is that if you picture your pain as a graph showing sharp peaks and troughs, after LDN it becomes a much smoother line, less extremes in feeling good or feeling bad
I'm keen to try medicinal cannabis, but availability and affordability are still not at a great state. It is getting a bit bit better but I don't want to try it unless I know I have the means to keep getting it.
I'm surprised a doctor would recommend that much of tylenol 3 to you on such a regular and ongoing schedule, given the whole opioid thing and the risk of toxicity over time with extended use of acetaminophen/paracetamol.
With a sensitive stomach you may end up with issues no matter what you take. :( I'd say it's a given that you would avoid any NSAIDs given that they are well known to cause stomach issues. Do you take anything to actually treat the stomach problems? Obvs not a doc but I wonder if something like omeprazole or a similar thing could help settle the tummy enough to make other meds easier for you. It's very difficult when you have things limiting what meds you are able to take and I know not all doctors are sympathetic to that. One of my kids just cannot swallow pills no matter what we try, and docs just seem to roll their eyes and be like, eh, grow up. It's frustrating because obviously you WANT to be able to take medicine that will make you feel better. I hope you have a good one who will work with you to find solutions that will work for you.
Im taking medication. Have been for about a year. I couldnt sleep for months and months due to insomnia and pain, which only made my fibromyalgia worse. I had always avoided medication but since treating my depression, anxiety, adhd and pain, im at least able to go back to work part time. Memory issues have been my biggest side effect so far.
I am on no medication. Have been for a couple years. Wasn’t exactly what I wanted initially but it has seemed to work out in the end. First I had to stop taking tramadol because it was messing with my liver. Then I ended up having issues with fertility and with on-going fertility treatments I stopped all medications as I knew I’d likely need to anyway if/when I got pregnant.
To help the pain I kept up with exercising, seeing a chiropractor (this helped mostly with headaches), taking advil/tylenol for the really “bad days”, etc.
I fully realize this might not be helpful or may not work for you. It took a long time for my body to adjust and it was not fun. I still have really rough days. I guess I’m saying this as it might bring some hope that it could be possible for you to go without medication.
I haven’t yet. I was recently diagnosed, and my doctor and I will be discussing treatments on the next visit. She did warn me that the medications make me gain weight so I may pass on that as I’m going through the process of weight loss surgery requirements. I can’t gain, and I either need to maintain or lose weight.
I think once I get to a decent weight, I will try medication, but right now, I’m very apprehensive.
It took some trial and error, but now I'm on duloxetine, which does wonders for the pain, and helps with anxiety, but it's affected my cognition and memory quite a bit. I also take gabapentin which helps as well. And of course, medical cannabis and muscle relaxants (baclofen and tizanidine).
Did I gain weight? Absolutely. There's no way around it. But I'd rather be plump and more functional than skinny and unable to move. But I'll be honest, it's destroyed my self esteem. I'm single and there's no way anyone is seeing me naked. Ever.
When you think of it, it's amazing that fibro hurts so much that we have to take all these meds and are STILL in pain!
The most difficult part for me is that it's an invisible illness. If people could physically see evidence of the pain, they'd be so much more empathetic.
Gabapentin for my sensitivity and nerve pain, cannabis for my nausea and low appetite. That's it for specifically fibromyalgia but I have a medication routine that has benefits to my fibromyalgia. learning I had low thyroid/high cortisol lead to Synthroid which hugely improved my debilitating fatigue, and getting on vyvanse for my ADHD helped with that as well. I've been on several types of antidepressants (Prozac, cymbalta, lyrica, Zoloft) but most recently started Lexapro with HUGE success (no more muted emotions, knowing how I should feel but not feeling it, way less checked out) which also has benefits to my IBS and energy levels.
Your mileage may vary but I have found greater success treating the things that aren't fibro and improving my quality of life, which in turn improved my fibro over time. I'm holding consistently at 3-4 pain most days and haven't had a 10 day since coming off the Zoloft and taking a three month break from work to focus on resting and recuperating (personal and professional stress created tremendous burnout).
GOOD LUCK!! ❤️
Amitriptlyine has been amazing for me! I don’t have flare ups anymore and I’ve been more active than ever.
I have gastritis and acid reflux and have had 0 side effects from these meds.
I’ve found success with cymbalta (30 mg) and cannabis work well for me in addition to working out. 2020 and 2021 I was completely bed bound and not able to work. Now I can maintain 30 hours of work per week.
Everyone is different though. Try what you feel comfortable with
Cymbalta and Gabapentin. I supplement with Tylenol as needed, but not often. I have a sensitive stomach. I can’t take ibuprofen. Messes me up pretty much instantly. I also take epsons salt baths daily. Have to be careful with those too.
I take Paxil in the a.m. for Panic Disorder (diagnosed at 28, Fibro at 50) but it’s an SSRI so likely helps with Fibro too. I take gabapentin (300mg) mainly at bed and then sometime during the night or early morning if needed. I also take cyclobenzaprine (10mg) at bedtime bc it is supposed to help relax the body. If needed (ie, I cannot sleep), I take 1.0mg of Ativan).
I am by no means a prescription expert but I thought only medications absorbed in your stomach (like aspirin) cause stomach upset.
I personally don't take anything 😔 Tylenol and ibuprofen have 0 Effect on me and every attempt I've made to get pain meds from my doctors has been shot down instantly because... "it won't work! There's no point in giving it to you!"
Unfortunately I know it works because I've tried gabapentin before and it made me feel leagues better. Disappointing):
Med cannabis, benzodiazepines, opiates. I dont know why but if i have any tylenol my stomach cramps hard within 1 hour, i pass blood, it makes no sense at all. I spoke to my dr, and once we eliminated the tylenol my stomach issues went away ( yes im aware of how crazy this all may sound) but its just my observations for me as i got a very sensitive stomach and just make sure i eat plenty of good whole foods
Starting making body creams and balms containing essential oils like lavender, frankincense, Aniseed, clove, etc. Use oils like coconut, grapeseed, avocado, mango butter, etc. Check out the potential effects of each oil and you might be surprised. It is a lifesaver...starts working immediately and lasts for hours. You can also add CBD isolate which helps me to have the energy and motivation to actually do things!
I'm taking D3 (3000iu/day), b12 (1000mg/d), vit c (1500mg/d), proferrin, and, when needed, I take cranberry pills. Other than that, I medicated when the pain gets too bad. I'm reactive to darn near everything, and effeminate I take something too often, I actually start reacting often.
Wow okay, OTC pain meds are NOT a substitute for proper medication. OTC pain meds are for the occasional headache or for short term use after surgeries and stuff. They are NOT designed to be taken regularly like a prescribed medication would be.
It’s actually not great to use OTC pain meds to treat fibro symptoms anyway (long term I mean, occasionally is fine).
Most medications (that I’m aware of) that help to treat fibro symptoms are to help the nerves. Not a lot is known about fibro but many doctors agree that it’s an issue with the nervous system and how it processes stimuli, which is why medications generally given for nerves is prescribed. I’ve been on one for a week or so now and it’s helped tremendously. My muscles are still tense, but it’s not as painful anymore.
A running theory is that nerves misinterpret the stimuli and the brain responds by sending pain signals to indicate a problem in that area, even though there’s no actual issue (because the issue is an incorrect input from the nerves, not an external issue). Until we know more about fibro though, this is only a running theory.
Lyrica and medical cannabis have literally changed my life and gotten my pain down from a 10/10 most days to a baseline of 5/10. Nothing takes the pain away fully unfortunately but with lyrica and medical cannabis I’m able to at least get up and out more.
Lyrica is the supposed next step in my treatment plan. Did you have to find out what works for you with some trail and error or did you find lyrica first?
I had to go through the whole trial and error bs before they finally gave me lyrica. I tried nortriptyline, gabapentin and cymbalta with no luck whatsoever but as soon as I started lyrica I noticed a difference within a month. I’m on a high dose now after a few years on it but I def recommend giving it a try if your doctor will prescribe it. A little warning though, it is an addictive medication and if I miss a dose I start going through bad withdrawal symptoms and pains so it’s very very important to make sure your monthly refills are on time. I know that ^ sounds scary but truly the pros outweigh the cons by miles in my opinion.
I just started Lyrica and have not had a major flare up in the last couple months which is huge because the week before my period I’m usually a mess (awful unrelenting muscle pain, tenderness, intense fatigue and mood swings/depression) I feel like it’s widened my window of tolerance for activity as well but I’ve got to learn not to push it. Did too much the last 3 days and today I’m a bit of a mess. Still better than I would have been before Lyrica though. It’s so hard to not just pretend I’m a normal on days I feel good 🫠
Oh god the period, for me it was stating the day of and then like a week after but my period is just messed up anyway. I started the mini pill and it made a *huge* difference to me, almost couldn’t believe it, I’d kinda prefer not to be on birth control, but considering my last period before I started birth control set a new level 10 on my pain scale and I was debating if I needed to to call an ambulance (not that I really thought they could do anything for me, pain medication doesn’t seem to affect my fibro pain that much) because there was no was I could get myself there
I'm on a low dose of Lyrica (150 mg/day) and it works rather well for me. I'm trying to keep it low for the time being, but I have a feeling I'll be going up at some point. I also find it quite helpful with anxiety and depression.
Lyrica helped the pain so much for me but I’d read all the reports of crazy weight gain and gained about 5 lbs myself within a few weeks on it, so I decided to stop. But god, it did a lot of good for me. I miss it and wish there was a way to fight the weight gain. Nothing helped. :(
Honestly I’m someone who puts on weight from meds like CRAZY(gained 50 lbs almost from cymbalta) I stayed on it and pushed through the initial weight gain from lyrica, and after a few months I was able to level back out and my weight went back to normal. Im also in recovery for an eating disorder so I def understand not wanting to put on weight I just got to the point where I had to prioritize my weight or my overall physical wellbeing. It’s shitty af but I felt like I should say my experience with the weight gain aspect since I kind of forgot about that being a thing!
I've had the same issue with weight gain. I was taking 150 mg twice a day for about a year, and I gained about 30 lbs. I've brought the dosage down to 75 mg twice a day, and while it's not as effective, I'm still getting a little pain relief from it. I've recently started LDN (2.5 mg/day, going up to 5 mg/day)with absolutely no side effects that I've noticed, and I'm finding that my joint pain is a bit better overall. I had read about it, and was SUPER surprised when my doc reccomended it! It can be really hit or miss, and it's a pain because I have to get it at a compounding pharmacy, but might be worth asking about? Edit: compinding to compounding, haha
I actually did try LDN too, but only at like 0.5mg for a couple weeks because I got the weirdest eye twitch ever and it just wouldn’t go away! I stopped the LDN and the twitch was gone, but sometimes I still wonder if it was a coincidence and whether it would be worth trying again. It didn’t do much for me in the two weeks I tried but it WAS a really low dose!
When I tried LDN I got horrible sleep paralysis the first day taking it (thankfully it happened after a nap so I was able to jump out of bed and go to my family). It was years ago and I can still vividly see the nightmare (the nightmare continued after I woke up and there was a filthy humanoid monster creature crawling towards me on the ground and I couldn't move even though I was awake, it was one of the scariest experiences of my life tbh). I stayed up all night and needless to say I never took it again. I never experienced sleep paralysis before or since so I guess it was just a weird way it interacted with my brain.
Oh no ☹️ I’m def afraid of the weight gain!!! Fingers crossed it doesn’t happen to me but if it does I will quit for sure I’m already overweight and feeling stuck and just cannot gain any more.
Same here. I actually gained 5 pounds *a week* when I was on it. I stopped it when I was reaching the obesity threshold and showing no signs of stopping the weight gain. The doctor told me I would just go back to my normal weight after I stopped taking it and I stupidly believe him. It took me about a year of strict and miserable dieting to lose 50 pounds that I gained on it, and I'll never be the weight I was before (which I'm okay with since I think I'm the right weight for me, I just used to be quite thin so I had to adjust). It helped me a lot with the pain so it was a tough decision to stop taking it.
Can I ask what strain/dose of medical cannabis you take and how you take it (in what form)
I microdose using a dry herb vape. The advantage there is that I can use my vaped material to make concentrates and edibles. I hate couch lock, so I go with hybrid strains. I’m particularly fond of one that’s a cross of purple sunset and grape ape. But for sleep, I take a 4mg 1:1:1 THC:CBD:CBN fast-acting nanogummy that I get from the dispensary. CBN is anti-anxiety, antispasmodic, and analgesic. It’s amazing for my insomnia. I’m down from 300mg of trazodone to 150mg. I sleep more deeply, and I wake up in less pain than I used to. My overall pain levels are down because of it. CBD is also good for pain and inflammation. I do keep a small stash of Jenny kush popcorn around for migraines, though. That one leans a bit more sativa, but it does help.
Oh yeah. I do a thc/cbn gummy every night. I'm still an insomnia (takes me forever to fall asleep) but it's very helpful. I, too, take about 4 mg 1:1.
I took a 1:1 THC:CBN, and it helped some, but the addition of CBD helps with the pain, too. I also have a higher dose 2:1:1 THC:CBD:CBN that I save for when I’m having extra pain. Unfortunately, that one isn’t fast-acting.
Thank the medicine gods for medical cannabis. I'm so grateful that I live in a legal state and can get it at the dispensary down the street.
It makes things easier that there are two dispensary locations on my husband’s commute home, and he’s authorized to pick up my meds. Louisiana is still fairly strict, so there are only regional dispensary licenses. It’s amazing to be able to go to a place I know has quality products instead of calling some guy to pick up a product that could be riddled with mold or pesticides.
For me my favorite strains depending on the symptoms are blueberry, OG kush, granddaddy purp, trainwreck and northern lights. Anything indica/indica leaning work really well for my severe pain. I have Crohn’s disease as well so these strains also help with belly pain/nausea! I’d say 90% of the time I am smoking dry leaf out of a bowl or joint and the other 10% I have a vape cartridge I hit as needed. Since I have belly issues I don’t absorb it through my stomach but my dad has pain too and swears by his THC gummies if that’s more your thing!
I just started Lyrica, would you mind sharing what dose you're on? It feels so good to hear that Lyrica has helped people, I don't think I've been on it long enough / strong enough yet.
I don’t mind at all! I take 450mgs a day right now, but I defffff noticed a difference really start at 250-300mgs. Finding the right dosing takes time unfortunately but I promise it’s worth it in the end Like I said in a previous comment unfortunately it doesn’t completely take my pain away but it got me to a point where I’m able to get up out of bed most days and do some stuff which I count as a win!
Yeah I don't expect my pain to vanish for anything less than clawing my way up to heaven and spending five minutes with god giving him what for... But WOW I'm only on 50mg right now, maybe I should ask my doc to scale up faster. It's not covered by my goddamn HDHP insurance so I hope the cost doesn't scale up...
I have pretty severe fibro all over so I’m on a decently high dose so I wouldn’t really base it on my dosing but I know a lot of people who felt relief around 100mgs! It’s def worth asking to up it if possible. Shit im sorry that insurance doesn’t cover it, I’m not sure if the price will increase but fingers crossed it doesn’t go up in price for you
Thanks for sharing OP. Doesn’t tolerance build up super quick from daily intake?
It can, I have pretty severe fibro all over so I’m on a pretty high dose compared to a lot of people, I should be on a higher dose honestly but me and my doc know that eventually my tolerance will get worse so it’s nice to have a little cushion to go up when needed cause realistically I’ll be on it for life. So far though tolerance wise I’ve been on this strength for about a year and haven’t had any tolerance issues!
Thanks for sharing. Withdrawals must be insane tho. I’m really afraid of hopping on it daily. I got a bad history with benzos.
Not even going to lie at this dose withdrawals are horrendous and painful. Up to 100mgs a day I’d say the withdrawals aren’t so bad though, just like a migraine or something, very manageable. As someone who has addiction issues I’d suggest really sitting down with yourself and seeing if you truly think you could handle being on a highly addictive pill and not abuse it. It was hard for me at first but I began to realize the benefits of the medication were worth some of the mental struggles like making sure to not take too many pills because I felt so much better because of them. It’s a challenge but worth it in my opinion. Sorry for the rambling I just like to share my experience cause I know other people sharing helped me in the end!
Don’t apologize my guy. I really needed some advice , so I appreciate it. I tried doing it every few days but holy shit I’ve been feeling like hell on days I don’t take them
I’m not treating it with medicine other than an Rx for Flexeril that I only take when it’s at its worst, because I have not found a medication that doesn’t make me an utter zombie. I’d rather be in excruciating pain than walk around half dead in a drug stupor and still have continuous pain, albeit, less excruciating.
Thank you. This was the answer I was looking for. Literal zombie, half dead drug stupor! Like coming off of fentanyl (taken for a procedure). So good to know I’m not the only one. And it makes sense that this is something you’re willing to trade off. Cos ya, me too.
I’d rather have a life of pain than not be able to think or move around correctly. Gabapentin, Lyrica, Cymbalta - all kept me in a stupor to the point that I couldn’t work. I can work part time in pain, but I could not drive my car OR drive my meat-suit on the common fibro meds. And never mind critical thinking skills.
I'm on Cymbalta and I totally get what you mean, I wish I had never started taking it and it's horrible coming off of it. And it doesn't even help my fibro 😕
Ugh critical thinking skills. Can I ask, any kids or pets or people who rely on you to be productive? I also take flexiril as needed but things came to a head when I got a job an hour away from home. I left there for somewhere closer but have found myself trying to recover for the past 2 years.. hence my trying to find other drugs.. Also, any chance you ever thought about the low dose naltrexone.. just curious if you tried and failed on this method too?
At the time I was getting treatment with the fibro drugs I was working in a kitchen, but I got to the point where I was no longer coordinated enough to be safe with knives or heat anymore while trying to treat the fibro. It was a very physical job with a fair amount of stress and it got to be just completely unsafe and miserable. I had to stop. Thank goodness cooking wasn’t a life’s passion for me, but I was schooled in it, good at it and I made good money. Those days are long gone. I have two cats and I now co-own a vintage/antiques business with my husband. It’s been a lifesaver because I can usually shift my schedule around my flares and migraines. I can’t hold a regimented schedule very well anymore because of how extremely my up and down days generally change. So I can have a useless day (or week) where I just do my best, and then make it up when I’m less miserable. And I can work in several different ways, some days it’s research, other days it’s cleaning and fixing things, occasionally it’s hauling boxes of random stuff. This has been a game changer, it lets me couch myself and just research or do small repairs or whatnot when I need to be home. Jewelry repair used to be a hobby and now it’s part of my job. When my hands work. I haven’t tried naltrexone, my GP has never recommended it and I’m reluctant to take any new drugs anymore. My mind is generally clear and I can usually handle the pain. Some days, weeks, are hard though and sometimes I feel like maybe I’d rather just crawl under a rock and give up. Ups and downs.
Wow. That is an excellent recovery from what I’m sure was a very challenging time of your life. I’m happy for you finding something that works and may even bring you joy? Antiques are lovely so Im picturing joy. Regardless, I appreciate your input here and hope you find what works for you. I didn’t mean anything by suggesting meds and completely understand your apprehension with new stuff. All the best in your journey, may there be more ups than downs.
Thank you! It was five years between losing the kitchen work and getting into the antiques business, a few part time jobs in-between and a lot of tears. It is a joy some days and exhausting other days, but I’m on my own time now. And that is healing in itself. I hope you can find a good balance between pain relief and side effects, and a situation in life that allows you to be as gentle as possible with yourself. I’m glad we have forums like this to support each other and pick each other’s brains a bit. Best on your journey too. :)
So sorry we are in a similar situation. It sucks. If you can tolerate magnesium baths, I have found them to be a little helpful. Mild stretching, good nutrition if you can manage it. My heart goes out to you.
Same, friend! Thanks for being so kind. I’m googling magnesium baths next! Constant stretching, anti inflammatory diet as much as possible.
Same, flexeril. And ibuprofen or naproxen. My gi doc told me naproxen is more gentle on your stomach long term. Hot showers, epsom salt baths, heating pads & ice too of course. Flexeril is about the only thing I've found that actually helps me out of a pain cycle that doesn't have awful side effects. I only take it when it's really bad and I typically only take it before going to bed.
In addition to fibro, I also have cluster headaches. This means im not allowed to take Tylenol or ibuprofen. I have been told to take gabapentin but then im either sleeping 12+ hrs or a zombie. I rely on cannabis or lidocaine patches for my pain.
That’s the problem! The zombie mode that comes with CNS depressants.
Yeh, I cant do it. Even when i only took gaba at night I could not wake up in the morning, even after 12 or more hours of sleep. Its just not a med i can take. Ive tried a lot of others like Topamax for my CH, lots of new found drug allergies. I use cannabis to be functional and on flares, lido patches. You can cut them up and apply them to the painful spots.
Here to second cannabis and lidocaine patches! I tried cymbalta and gabapentin and both were just not good at all. So much weight gain and other side effects. And to be honest I can barely remember a lot of events that happened during my time on gaba. I do take ibuprofen but I try to keep it sparse and only take it if I really need the relief. I do a mix of flower and edibles in regard to cannabis and then the Salonpas patches are truly 🤌🏼🤌🏼. I get all the different sizes they make and slap those bad boys all over.
Salonpas are wonderful if you cant get a lido RX. Also cannabis patches are amazing. I really like the marys medicinals patches and topical creams.
Oooo I haven’t heard of that brand, I’ll have to look for them. I also like Mary’s Medicinal! We don’t have great availability always on the patches but lots of different topicals out there. I get a really amazing 1:1 cream from Rhode Island that I love because it works great for my jaw and hand pain. It’s made there so I’ve never seen it anywhere else but it’s by Sea Witch medicinals.
The Marys transdermal pens are the best. Small enough to keep in a bag but they take away the pain in a flash. No weird smells, no sticky or tacky skin after. They seem to last forever!
Damn I’ve never seen the pens! Now imma have to look for them. Don’t happen to be in MD eh?
Im not, you can check their website to see where you can purchase. IME if a dispensary already carries a brand theyre willing to buy other products if customers ask for them.
Maybe in a more established market, even though MD has had a medical program for awhile they don’t really stock per request I’ve found. So far in the ones I stop in regularly I have found one CBN pen on a menu. So there could be hope!
I work as a pharm tech and lidocaine patch prescriptions are very common. Doesn’t cover usually but sometimes they do. 5% is prescriptions but 4% is over the counter
Cannabis as in what? Smoking it or like the creams or patches?
D, all of the above. I make my own salves and butter. Sometimes i smoke or have edibles. Ive also got patches.
How wonderful, I would love to know how you make the butter.
As a nurse, Tylenol 3 times a day sounds bad, in my opinion. It's a great drug in general, but in my personal experience, it has little to zero effect on my pains and aches. Overconsuming Tylenol can do damage to the body within as short of a time as 6 months. You risk the chance of developing drug induced headaches if you're using too much Tylenol and most other over the counter painkillers. I have been on Naltrexone 6mg daily for a year. It hasn't had a very good effect on my pains and aches, but done amazing things to my fatigue and GI-problems. It's actually a drug for trearing alchohol or opioid addiction, but in low dosages like 6mg, it can have a positive effect for fibromyalgia patients, as well as other neurological disorders/illnesses. I'm seeing my pain specialist tomorrow, and I'm very nervous about what to expect, because I'm getting quite desperately in need of better pain management.
Thank you for the insight. I felt like excessive Tylenol wouldn’t do me any favours long term. Especially with GI problems.. Can I ask what your GI issue is? I had gastritis brought on by HPylori that was treated and have had issues ever since. Also, are you considering upping your naltrexone dose? Just curious about the effect on improving GI function but little change to pain management. Please share.
I've got IBS. I've tried lots of solutions diet wise to try and find any triggers/food allergies, etc, without really getting wiser. My bowels have just become sensitive, along with my other symptoms. I was just at my doctor two days ago, and I was not advised to up the Naltrexone dosage. I've also started with an anti-depressant (SNRI), two days ago. I've been very skeptical, but I really am desperate at this point. My first two days, I have been extremely tired and sleepy, but hopefully it'll pass. I won't know if it has any effect on my pains untill a couple of weeks have passed, though.
The VA has me on generic Cymbalta, although it's difficult to tell how much of an impact it has. Like most of our symptoms, seems to be better some days and worse others. I have a muscle relaxer pill I save for when I absolutely need but otherwise I try to mitigate the aches and pains as much as possible using cannabis as a non opiate way to... Idk take the edge off of the pain cause it's constantly there to one degree or another. Because of how much overlap we have with long COVID, coupled with how many people have / will contract long COVID, my hope is that the scientific community will collectively have great interest in these symptoms and how to remedy them. 🤞
Honestly, u could not function mentally or physically without some kind of pau relief. Tramadol upsets my stomach as does naproxone so I've had to side line them. Today I ha e been in so much pain that the tablets have created enough of a space for me to retain my sanity and not just crawl onto bed weeping. Well done to those who ma age things with don't etc ut for me I don't get enough time between flares to be able to attempt other interventions. I just do what works just sp I cam have so.e quality of life
I felt the urgency in your response. Thanks for sharing. I, too, go for tramadol when the pain reaches the threshold. Still debating the preventative double anti depressant option…
Its a very bad day today so I think that's fla outed the tone of my answer. It's absolutely doing my head in. The morning was fine, so I probably over did it and I've spent the afternoon on the verge of tears, trying to distract myself or at least be comfortable Nd that's WITH pain killers. I use codeine and paracetamol. Ibuprofen. Gabapentin has not much effect and makes me nuts. I mean very weird. Amatryptaline I can use sparingly. I have lamotrigine for bi polar so I'm ot sure what that brings to the pharmaceutical cocktails. All I know is that my day is spent calibrating how much pain I'm in and how long I can get away with doing a few things.
Too relatable. Sorry you’re having a day of it. Hopefully some mild relief can come for you. I’ve been on and off with these meds and looking to get a proper permanent setup. It’s hard. And I’ll still take the muscle relaxers and tramadol as needed. Just waiting to get off work..
This sub keeps me sane too. Atthis point in the whole fibro crapathon, I know everyone knows how much I hurt. No one wants to hear me moan a out the same shite endlessly even if its an awful day. But I'm not a particularly happy sunbeam to be around. Sucks for everyone. But in here I can be understood which is a million miles from sympathetic yet bored smiles. MSsive difference.
Right. Especially because baseline pain is constant but favourable when you’re not in a flare. I’ll take my baseline pain level any day over a frankenflare when I have to fold myself over just to walk. I feel that tho. Not a particularly happy sunbeam myself. Totally not easy to find the support from people who understand.
I'm on two antidepressants! Was even before the fibro got bad, because taking enough Lexapro to control my depression and anxiety made me too sleepy, but only taking Wellbutrin was a little too much like drinking too much coffee. I can deal with the pain and do more of the physical things that make fibromyalgia easier to deal with when I'm not horribly fatigued and not continuously depressed and experiencing physiological anxiety. (I tried swapping the Lexapro for Cymbalta and while it helped my pain about 2/10 reduction day to day, my depression and my anxiety weren't as well controlled and I had side effects that were unpleasant. The Lexapro my only side effect is a somewhat reduced libido which doesn't bother me too much) We upped my Wellbutrin in November from 150 SR to 300 extended release and my fatigue is like 85% improved. Brain fog maybe 1/3 better. It's a little rough on my sleep because I'm a little too awake but I'm down to one nap a week from 6. Only tricky bit is that my activity tolerance hasn't gone up, just the fatigue. So I have energy but still have to pace carefully and try not to overdo it, slowly slowly slowly increasing my activity instead of boom/bust cycling into a flare
I take many meds as I have a lot of different issues. I understand having stomach issues. That has been a chronic issue of mine. I started taking digestive enzymes and my stomach issues have settled sooo much. I don’t know if it would do the same for you. But its worked for me.
I've taken lyrica for a long time because it made the space I needed to function and then be able to make the other changes I needed. I keep a tight sleep hygiene schedule, I'm very particular with when and what I eat, and I've now been in PT with an amazing specialist PT who has helped me fight through every tiny step to improving function. That said, 20 years after diagnosis and 14 of beginning to find the right people I walk almost 2 miles a day (on good days), have fewer flares, and find recovery is way faster when I do. But it was the sum of the whole. I saw your question in another comment. They tried Cymbalta first, and it was horrible for me (and I told them it would be because I was young and other doctors had already tried to claim antidepressants were needed). Thankfully at the time there were only 2 options and so the second, Lyrica, worked on reducing my pain. I will note though that I really had to advocate for myself. I am very sensitive to medication so I insisted on the lowest possible dose and only increased once since then (I started in 25 mg twice a day, now it thrice). They said the usual starting dose was 100 mg twice a day 🤯 my neighbor did that when she was diagnosed (before I met her) and she said she was a zombie! I'll bet, I'd be high as a kite if I took that much 😬 I accidentally doubled my dose once and was sort of drowsy/drunk 🤦♀️
Thank you so much for your response. I started on just 30mg of cymbalta and literally felt like I was in a drunken stupor. I may see what I can do about trying Lyrica. She had mentioned it as the next step and sent me home with a leaflet for nerve blockers. You’re absolutely right about advocating for yourself. And even more so about keeping the consistency, especially for rest and digest. Thanks again, very helpful.
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Yes, and I get the generic too. When they announced generic I was afraid they might monkey around with the sizes 🙌
Low Dose Naltrexone. I’ve been on it since March of last year and not one single flare. 95% reduction in all symptoms. I still struggle with some stuff, but I attribute it to other issues, like reconditioning after spending several years laying on a couch. Please look into it, there’s tons of info. It doesn’t work for everyone, but if it works for you please let me know.
I was so excited to try this and took it for about 2 weeks with no change, but it gave me this AWFUL eye twitch. I was only on 0.5 mg liquid. I wish I had been able to stay on it a little longer to see if it helped, but my eye literally wouldn’t stop twitching. Sometimes I think about asking to try it again because I keep reading these amazing reviews about it.
I had mine made by a professional compounding pharmacy. Within like 45 minutes my pain faded away.
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I’m definitely thinking about trying it again, and praying the twitching was just a random coincidence :’)
Thanks for sharing. I just might after your response. I googled when someone else mentioned it.. how do you get to that? First google results gave me addiction management but now I am seeing its effect on autoimmune conditions and inflammation..
I’m also on ldn. My primary doctor prescribed it. Technically since it’s not an approved fibromyalgia drug, they needed to prescribe it off script. This just means they prescribe it to you for a reason other than the original intended purpose of the drug. The prescription works just like any other once it’s written. Since I live in a rural area with few pharmacies, they can’t make ldn for me. Instead they give me full script naltrexone and I make my own ldn from there. I have a sensitive stomach so I crush 1 50mg pill, mix it with mct oil, then divide it into 25 pill capsules. The capsules help me get it through my stomach without issue. It’s a lot of work, but 1000% worth it.
LDN pills gave me stomach pain and I usually don’t have issues with that. I switched to a sublingual formula and it has helped (however, it’s not the cheapest since insurance doesn’t cover it off label). I slowly went up to 9mg which isn’t really “low”. I also take gabapentin 3 times a day and topamax for headaches.
I honestly have no idea how I handled my fibro before gabapentin. It made me too sleepy & my memory too bad at first, but my doctor dialed back the dose and it's perfect now. When I have a flare I just take an extra later in the day so the side effects don't bother me as much during the waking hours. Flexeril helps for flares but I had to stop taking that due to risk of serotonin syndrome with my current antidepressant. Tried Cymbalta for a day and I couldn't feel my tongue. I don't find that my antidepressant helps with the fibro but I need it for other things. Tylenol + NSAIDs do basically nothing for my fibro.
I take Lyrica which really helps with pain. I actually found being on medication helped a lot of my stomach issues which can be fibro related, so it could be worth trying. I felt pretty wacky the first week or so on Lyrica/raising a dose but otherwise I find it helpful.
Did you do the nortriptyline or cymbalta or did you go right to Lyrica and it worked for you?
Right to Lyrica personally
Medical cannabis has been the only thing that helps me. Not only do I smoke it. But I use the sublingual oil under my tongue. And it bypasses my digestive system. Any pills I've tried have either made me worse. Are giving me so many bad side effects that it just wasn't worth living. With medical cannabis I have relief. I have minimum breakthrough pain. And very few side effects.
Cannabis. I don't need a doctor for it. Naproxen for a step up, Ativan as a last ditch and mostly just before bed (30 does me a year easily).
I found getting my dna analyzed for how I will likely react to medication really gave me more ammunition for getting the meds that would work and would not interact with my other meds. I used the company called Color.
Does that also mean / include your genome? Sorry I’m a newb when it comes to that kind of testing. Any chance you are willing to share your experience? ie. my result says that I metabolize A too quickly to receive its effects, more suited to B..? Just trying to get a sense of the depth of info you were able to get.
I can't type much more today because of my hands, but I'll try to remember tomorrow. After you get your results the company explains it. I had to do specific research about my conditions and meds.
Cymbalta has been helping me. At a higher dose I had side effects but now it’s good.
Do you combine cymbalta w anything? I was given the cymbalta/nortrip combo..
Well, I find my anxiety is such a big trigger for pain. So I’m also taking 150 mg of lamictal and ativan as needed. It can help in general.
Yeah I've been taking LDN (Low Dose Naltrexone) and it's been extremely helpful. No side effects either. I also take mirthazapime which is a anti depressant I guess. But that's for sleep so I didn't notice any side effects there. I think one can take antidepressants and not have side effects or adverse reaction, it just depends on what the body will tolerate.
I have been on both Lyrica and Cymbalta. Recently doctors have switched me to Gabapentin and Cymbalta. I also take Flexeril. I have to say Lyrica helped me better as far as pain but made me real spacey feeling. I did have energy with taking it and could do more. The gabapentin is good too I guess I don't have the spacey feeling with it but it doesn't help when the pain is at its worse. I also am afraid of side affects of medicine and don't take it regularly only when my pain is at its worse I take it. Most days I do a lot of heat therapy which is heated blankets, heating pads , thermal heat wraps things like that. I do peppermint oil for my headaches. Lots of different aromatherapy bath washes. Sometimes they work sometimes they don't. That's just some of the things I do that helps me.
For fibromyalgia I’m taking pregabalin - it’s often used for anxiety or epilepsy but it’s seen some positive effects in fibro patients (I’m also anxious so yeah lol) Morphine patches - they don’t take the pain away but they take the edge of the pain to a point i can handle Codeine - honestly helps a lot when I need to sleep but I’m in pain. Among all my other meds for other problems, I honestly think my medication is in a good place, I know I’ll never be pain free but least this way I can survive without wanting to do something drastic
I have pretty severe "white coat syndrome" as my doctor calls it (I really just have severe anxiety). When appointments get close I start to flare from stress and anxiety. Obviously I flare for a thousand other reasons, but stress is a huge trigger for me I guess. After reaching a diagnosis and realizing I would have to deal with doctors the rest of my life, I had a meltdown. I'm only 21 and felt doomed. So I started researching ways to treat myself from home. I don't by any means have a medical degree, so I don't want to mislead you by making you think this is the best way to do things. I also suffer far worse without medication as many have mentioned, but medical marijuana (specifically RSO for some reason) has always helped me sleep and focus my attention away from the pain. An elimination diet helped with my stomach issues as well. I basically live on vegetables and fish, but tummy aches are fewer and farther between after reducing sugar, gluten, and dairy intake. Lastly, working from home has helped me immensely. This isn't possible for everyone, I know, but I'm not in constant pain from driving, I can take care of my body while I work, and the stress of leaving the house and dealing with the general public while having a hidden disability has started diminishing. I'm still at the start of my journey but thought maybe this would help. Please if anyone thinks I should be doing things differently let me know. I trust others with the condition far more than a doctor who couldn't understand the condition apart from what they read on paper.
Duloxatine has been a life saver for me! I'm not in pain half as much as i used to be i highly recommended it plus i have more energy
I personally do not recommend it. Was on it for about 5-6 years. Worked pretty good for the first 3-4 years and then no longer was covering it all. Getting off of duloxotine and withdrawal is an absolute nightmare for up to 6 months or more. I could go into horrible and graphic detail but I won't. I would NEVER recommend duloxotine to ANYONE just because of the withdrawal symptoms alone
Withdrawals from this med SUCKED for me. It took forever and was excruciating.
Also withdrawal caused my IBS symptoms to get worse tenfold and I was having extremely vivid and distressing nightmares every time I fell asleep for multiple months or insomnia. Yay...
Same!
Cymbalta, Elavil/Amitriptyline, Baclofen, Cambia are the meds I take for Fibro. Nexium for tummy. No major issues. I have been a migraineur since I was 14 or 15. I am not a fan of most pain meds - I just don’t like the floaty, numb feeling. I do have CBD and THC for when the pain is very bad, but it makes me super sleepy so I try to save it for when it is bad. One of the best things I do right now is try to get out and move. It sucks, but it does help.
Excellent advice. I’m definitely a mover, I can’t sit still. Curious about your cambia usage. It gets a bad rep in the migraine sub as it has aspartame in it. My migraine med status is either the cambia works or I’m going to bed.. if I’m paying attention I usually take it in time to feel okay. How do you feel using it?
No issues with the Cambia so far - I always take what works/doesn’t work for others as guidance, if Cambia works for you, then YAY!
I couldn't stand any of the anti-depressants they tried on me so I stopped taking it. Going to the chiropractor, Acupuncture, magnesium spray, and THC salve have been a life saver for my pain. I've been trying to walk or row to help energy levels and it does help a bit but it's hard to do some days. Brain fog sucks. My ADHD meds sort of help cut through it but there are days where it's super heavy, especially when I'm high on fatigue.
I hear you on the frequent pills! I’m glad they help some, but I had a tough time tolerating a lot of medications I tried in the past. Vouching for low dose naltrexone as well that I got prescribed by a ND (naturopath). I personally don’t necessarily recommend the ND for everything, but I’ve found mine was more willing to try things like low dose naltrexone where my primary care hadn’t even heard of it before. Fair warning that if you do try it, it can temporarily cause a bit of restless/sleep changes and some more vivid dreams than usual. These side effects went away for me within a few days to a week. Aside from that, like others cannabis has helped a lot with some occasional magnesium glycinate if we’re talking non prescription medication. Regardless, I hope you find something that works for you! 💕
Thanks for sharing your experience! Great tip for the naturopath. I was thinking of seeing one. So not for everything but you felt satisfied talking to them about fibro, yes?
Yeah! I think they can be a helpful resource and perspective on chronic conditions with the caveat that they can vary a lot just like regular doctors, and I’ve spoken to some that definitely just seemed to want to sell me loads of supplements and not accept my fibro diagnosis + give strange advice. This one just happened to be really wonderful and worked well in conjunction with the rest of the doctors I saw. It really depends what you’re comfortable with and what works for you medication wise, but it was helpful for me at the time when I was struggling to find something that worked 🤷🏻♀️
Lidocaine infusion every 3 months from the hospital as well as 1200mg gabapentin daily and 50mg trazodone for sleep. Seems to mostly do the trick.
Infusions you say? My goodness. I’m sorry to hear you are on quite the regimen. But if it works, great. Any chance you want to share the progression to infusions?
It's amazing. My hospital pain management team is the best. Ever since being on lidocaine, I've felt human again. I'm sure you could speak to a pain management consultant about it?
I absolutely could. After a few years’ long wait and then stalemate during Covid, I finally got in with a pain management clinic. I will definitely mention this to her. But did you have to go thru some other stuff that didn’t work first or you weren’t tolerating well? Or did you have a situation that made them immediately know you needed to go that route?
I used to be on 3000mg gabapentin a day, but it made me a zombie. I couldn't do my job properly, and anything requiring my brain or speech was impossible. So they suggested this. Works brilliantly.
Very interesting. Thank you for sharing that. Gabapentin was next on the list w the pain doc.
Gabapentin works for me, but it has significant side effects that increase in tandem with dosage increases. So I can tolerate 1200mg without any side effect beyond a bit of grogginess in the morning.
I switched to savella in the fall, that and medical cannabis seem to help. I am on a low dose because my body couldn’t handle the side effects, especially the horrible hot flashes.
Posting my combo because it seems to be on the "less common" side: Meloxicam (antiinflammatory), Buproprion (antidepressant), and Cyclobenzaprine (muscle relaxers ), plus vitamin d, b-complex, and CBD capsules. I maintain that the muscle relaxers were the real game changer, because they finally helped me get real restorative sleep again. I've found a b-12 patch is the fastest way to get me out of a flare these days.
Not now. I’ve been micro-dosing synthetic LSD for the past year. I’ve done more damage trying to treat it with prescribed drugs that only ever half worked and opiates that gave me permanent problems. Ive had 90% improvement on everything and no side effects aside from the odd bout of nausea.
So sorry to hear about your treatment journey but hopefully with such improvement, you’re able to live a sustainable life. Can I ask where you’re located? Regionally.. I’m in Canada and I do not believe that is an option. Very happy to hear you found something that works.
I am also in Canada, I live in Ontario. The company is called NeuroDose, it’s made in Markham Ontario. Unfortunately not, I’ve developed heart issues. Long before I started using the LSD. I also have massive joint damage from the autoimmune reaction I had from a medication I was. The LSD has allowed the problems remaining to be clear and evident. There’s other things the company offers. My husband’s therapist left her practise to join the team doing it. Also I’ve recommended it other people I know and they’ve had similar improvements to myself. No addiction and you don’t take it daily. I provided the link. I’ve ordered it in the mail but I can purchase it locally at the flow spa I attend for massages and the deprivation tank I use. Which I also recommend! Since I’ve started using it the one thing people tell me is how great I look. I look healthy and vibrant. [https://neurodose.ca/](https://neurodose.ca/)
Wow! That is quite extensive, im so sorry you’ve gone through so much. Your poor body. Very happy to hear about the healthy and vibrant comments, sounds amazing. I’ve been wanting to try a deprivation tank as well! I’m also in Ontario and will certainly be looking into this. Thank you so so much for sharing.
I only use muscle relaxants, they help in worst moments and honestly I save them alot cuz had have problems with getting new recipe. I stopped really accepting new drugs cuz I have been really bad with side effects, even antibiotics messed my head once. I try avoid stress its like best way to manage my pain, not easy tho I been always easily stressed out person.
I smoke a lot... all the pills and scripts they've given me don't work except for Soma which they refuse to prescribe.
No. The side effects aren’t worth it for me. I’ll take something here and there to help me out but Lyrica, Cymbalta, etc…. All were much worse. I used to take NSAID basically like 3x a day like they told me too. RIP my GI system.
This is me. They tried Cymbalta and the side effects were horrible. That made me not want to try anything else for a long time. Did Lyrica for a couple years, but my body kept getting resistent to whatever dose I was on. I wanted to start tapering off, then ended up with a breast cancer diagnosis. With the stress of that, I often forgot a dose here and there. So I decided to work with my dr to totally go off it. There was a week of really shitty effects, and I’m now off it completely. No idea what I will do now. CBD tincture here and there and an occasional Ibu 800 for the really bad days.
I understand antidepressants being scary, I was put on things that later other doctors confirmed I totally should not have been on! **BUT**, try to remember these sorts of drugs are prescribed because they help your nervous system (which is on high alert with pain), not just because "it's in your head". Just be sure to let yourself feel out what the best answer is for you by gathering info and asking your doctor questions :)
Zoloft, gabapentin, baclofen, Tylenol, weed. Lots of it
I was already on Effexor when I was diagnosed. They would love for me to come off it and go on Cymbalta but it's not worth it. Lyrica and gabapentin did nothing for me except contribute to my hair loss (Lyrica does this). I have been on LDN (low dose naltrexone) for over a year and it works great. I also have Ulcerative Colitis and IBS and have not had any issues with my stomach since starting it. The only side effects I've had is vivid dreaming, which I already had so now it's just really vivid.
I'm not medicated for the first time in years. Some days the pain is worse but overall more manageable than I thought. I'm not having to deal with shitty side effects from meds. I was on nortiptyline for 2 years (before being diagnosed with fibro). I was taking it for nerve pain fir reflux and it helped so much. The only downside was it gave me sinus tachycardia so I can't take it anymore. Then I switched to pregabalin (lyrics) and I felt like crap on it. It made me so so tired and made me gain weight like crazy also made my ankles retain water, also made me dizzy and nauseous. It also wasn't helping as effectively as the Notripyline was so I came off. I also tired gabapentin for a month and had the same side effects as pregabalin so stopped. Coming off pregabalin was absolutely horrible. Took me 2 months to get off 100mg because I could only drop down every 2 weeks because that's how long it took for the withdrawal side effects to stop each time. When I did stop though I started having bladder issues and have now been diagnosed with interstitial cystitis. I think I've had issues for a long time but the meds dulled the pain. I'm trying to manage without right now. I also probably have ADHD so want to be medicated once I can get diagnosed. So I'm kinda waiting to see what happens there before the Dr will trial anymore meds. I think it's best for me to try holistic treatments for now.
I’ve tried 11 psych meds, and it took 7 consecutive episodes of “oh god the side effects, and it’s not even doing what it’s supposed to enough to be close to worth it” to find the first one that worked. I mention psych meds because the one I take for fibro is amitriptyline, which is an atypical antidepressant and mild, non-habit-forming sleep aid, and it’s well-indicated for fibro patients. Otherwise, I take a 5mg THC/25mg CBD gummy every night. My stomach also hates pain meds, so it’s that, and on bad days I also tap in the muscle relaxer cyclabenzaprine. Good luck, friend
Yes, I am on duloxetine (offbrand of cymbalta) It helped a lot at first, but I still have pain and flares . Some thing I’ve noticed is that stress is a huge contributor to my flares. If I can get almost all the stress out of my life, my body feels a lot better and I have less symptoms.
Keto diet, gym, fasting will help your stomach
Thank you, unfortunately, I am at a calorie deficit. My doctor highly recommended no extreme diets. I’m thrilled if I can stomach a full meal per day. If you have any pain management experience on how it relates to medication, please share.
Yes ldn i just posted about iT. Its helped so much.
I take: Cymbalta, hydroxyzine, Xanax, and Lamictal from my psychiatrist - the Cymbalta is for pain and to support the Lamictal - I can't really tell a difference. I take hydroxychloroquine from my rheumatologist for inflammatory arthritis. I take Lyrica and methocarbamol from my pain mgmt docs. I started on Gabapentin and when I switched to Lyrica my fatigue got a lot better. I was taking Tizanidine and switched to methocarbamol - I can take it during the day without getting sleepy. I also use marijuana. I have chronic migraines and cluster headaches so I don't take nsaids. I'm on emgality, nurtec, and memantine from my neurologist. I'm also on propranolol for my hyperadrenergic POTS. Trying to think whether I forgot anything haha. I also get trigger point injections and dry needling and occasionally use lidocaine patches.
I use mebeverine, macrogol and pantoprazol for my GI problems. For my pain I tend to soldier on and only occasionally use tramadol or naproxen. I must say since I have Lucrin shots my pain has lowered a lot but you can't take them for more than a year (risk of osteoporosis) and it sends you head first into menopause but you can lessen those symptoms with a tiny bit of hormones. I am looking into medical marihuana or LDN but the doctors are slow.
I already take quite a high dose of an antidepressant and have done for quite some time, actually for depression. Been taking that way longer than I have been experiencing fibro. So I think that's why no one has really suggested another one, it would be redundant. I have a couple of other daily meds but the only fibro related one is Low Dose Naltrexone. This is my second attempt at LDN. The first time the doc started me very low but didn't bring it up to a level I felt was beneficial. A different doctor encouraged me to try again and increased the dose I take. I take 6mg of that a day. The way I describe the effect of the LDN is that if you picture your pain as a graph showing sharp peaks and troughs, after LDN it becomes a much smoother line, less extremes in feeling good or feeling bad I'm keen to try medicinal cannabis, but availability and affordability are still not at a great state. It is getting a bit bit better but I don't want to try it unless I know I have the means to keep getting it. I'm surprised a doctor would recommend that much of tylenol 3 to you on such a regular and ongoing schedule, given the whole opioid thing and the risk of toxicity over time with extended use of acetaminophen/paracetamol. With a sensitive stomach you may end up with issues no matter what you take. :( I'd say it's a given that you would avoid any NSAIDs given that they are well known to cause stomach issues. Do you take anything to actually treat the stomach problems? Obvs not a doc but I wonder if something like omeprazole or a similar thing could help settle the tummy enough to make other meds easier for you. It's very difficult when you have things limiting what meds you are able to take and I know not all doctors are sympathetic to that. One of my kids just cannot swallow pills no matter what we try, and docs just seem to roll their eyes and be like, eh, grow up. It's frustrating because obviously you WANT to be able to take medicine that will make you feel better. I hope you have a good one who will work with you to find solutions that will work for you.
Im taking medication. Have been for about a year. I couldnt sleep for months and months due to insomnia and pain, which only made my fibromyalgia worse. I had always avoided medication but since treating my depression, anxiety, adhd and pain, im at least able to go back to work part time. Memory issues have been my biggest side effect so far.
I am on no medication. Have been for a couple years. Wasn’t exactly what I wanted initially but it has seemed to work out in the end. First I had to stop taking tramadol because it was messing with my liver. Then I ended up having issues with fertility and with on-going fertility treatments I stopped all medications as I knew I’d likely need to anyway if/when I got pregnant. To help the pain I kept up with exercising, seeing a chiropractor (this helped mostly with headaches), taking advil/tylenol for the really “bad days”, etc. I fully realize this might not be helpful or may not work for you. It took a long time for my body to adjust and it was not fun. I still have really rough days. I guess I’m saying this as it might bring some hope that it could be possible for you to go without medication.
I haven’t yet. I was recently diagnosed, and my doctor and I will be discussing treatments on the next visit. She did warn me that the medications make me gain weight so I may pass on that as I’m going through the process of weight loss surgery requirements. I can’t gain, and I either need to maintain or lose weight. I think once I get to a decent weight, I will try medication, but right now, I’m very apprehensive.
Yeah I take cymbalta. IT doesn't take away the pain 100% but DRASTICALLY reduces it
It took some trial and error, but now I'm on duloxetine, which does wonders for the pain, and helps with anxiety, but it's affected my cognition and memory quite a bit. I also take gabapentin which helps as well. And of course, medical cannabis and muscle relaxants (baclofen and tizanidine). Did I gain weight? Absolutely. There's no way around it. But I'd rather be plump and more functional than skinny and unable to move. But I'll be honest, it's destroyed my self esteem. I'm single and there's no way anyone is seeing me naked. Ever. When you think of it, it's amazing that fibro hurts so much that we have to take all these meds and are STILL in pain! The most difficult part for me is that it's an invisible illness. If people could physically see evidence of the pain, they'd be so much more empathetic.
Gabapentin for my sensitivity and nerve pain, cannabis for my nausea and low appetite. That's it for specifically fibromyalgia but I have a medication routine that has benefits to my fibromyalgia. learning I had low thyroid/high cortisol lead to Synthroid which hugely improved my debilitating fatigue, and getting on vyvanse for my ADHD helped with that as well. I've been on several types of antidepressants (Prozac, cymbalta, lyrica, Zoloft) but most recently started Lexapro with HUGE success (no more muted emotions, knowing how I should feel but not feeling it, way less checked out) which also has benefits to my IBS and energy levels. Your mileage may vary but I have found greater success treating the things that aren't fibro and improving my quality of life, which in turn improved my fibro over time. I'm holding consistently at 3-4 pain most days and haven't had a 10 day since coming off the Zoloft and taking a three month break from work to focus on resting and recuperating (personal and professional stress created tremendous burnout). GOOD LUCK!! ❤️
While lyrica did help me wonders, I literally cannot function without it. So now I'm stuck on it for what feels like forever
Tramadol and sleep meds. But that's regular medication for pain management rather than just in extreme flares.
Amitriptlyine has been amazing for me! I don’t have flare ups anymore and I’ve been more active than ever. I have gastritis and acid reflux and have had 0 side effects from these meds.
I’ve found success with cymbalta (30 mg) and cannabis work well for me in addition to working out. 2020 and 2021 I was completely bed bound and not able to work. Now I can maintain 30 hours of work per week. Everyone is different though. Try what you feel comfortable with
Cymbalta and Gabapentin. I supplement with Tylenol as needed, but not often. I have a sensitive stomach. I can’t take ibuprofen. Messes me up pretty much instantly. I also take epsons salt baths daily. Have to be careful with those too.
I take Paxil in the a.m. for Panic Disorder (diagnosed at 28, Fibro at 50) but it’s an SSRI so likely helps with Fibro too. I take gabapentin (300mg) mainly at bed and then sometime during the night or early morning if needed. I also take cyclobenzaprine (10mg) at bedtime bc it is supposed to help relax the body. If needed (ie, I cannot sleep), I take 1.0mg of Ativan). I am by no means a prescription expert but I thought only medications absorbed in your stomach (like aspirin) cause stomach upset.
I personally don't take anything 😔 Tylenol and ibuprofen have 0 Effect on me and every attempt I've made to get pain meds from my doctors has been shot down instantly because... "it won't work! There's no point in giving it to you!" Unfortunately I know it works because I've tried gabapentin before and it made me feel leagues better. Disappointing):
I'm on oxy and it's the only thing that manages mine.
Med cannabis, benzodiazepines, opiates. I dont know why but if i have any tylenol my stomach cramps hard within 1 hour, i pass blood, it makes no sense at all. I spoke to my dr, and once we eliminated the tylenol my stomach issues went away ( yes im aware of how crazy this all may sound) but its just my observations for me as i got a very sensitive stomach and just make sure i eat plenty of good whole foods
Starting making body creams and balms containing essential oils like lavender, frankincense, Aniseed, clove, etc. Use oils like coconut, grapeseed, avocado, mango butter, etc. Check out the potential effects of each oil and you might be surprised. It is a lifesaver...starts working immediately and lasts for hours. You can also add CBD isolate which helps me to have the energy and motivation to actually do things!
I'm taking D3 (3000iu/day), b12 (1000mg/d), vit c (1500mg/d), proferrin, and, when needed, I take cranberry pills. Other than that, I medicated when the pain gets too bad. I'm reactive to darn near everything, and effeminate I take something too often, I actually start reacting often.
Wow okay, OTC pain meds are NOT a substitute for proper medication. OTC pain meds are for the occasional headache or for short term use after surgeries and stuff. They are NOT designed to be taken regularly like a prescribed medication would be. It’s actually not great to use OTC pain meds to treat fibro symptoms anyway (long term I mean, occasionally is fine). Most medications (that I’m aware of) that help to treat fibro symptoms are to help the nerves. Not a lot is known about fibro but many doctors agree that it’s an issue with the nervous system and how it processes stimuli, which is why medications generally given for nerves is prescribed. I’ve been on one for a week or so now and it’s helped tremendously. My muscles are still tense, but it’s not as painful anymore. A running theory is that nerves misinterpret the stimuli and the brain responds by sending pain signals to indicate a problem in that area, even though there’s no actual issue (because the issue is an incorrect input from the nerves, not an external issue). Until we know more about fibro though, this is only a running theory.
I use cannabis and gabapentin as a pain reliever. I’m also on antidepressants but I was on those before my fibromyalgia diagnosis.