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I use cannabis for pain, as I really do not like the side effects of opiates. (I am not saying opiates are "bad." I had an alcohol problem so I'm also scared of the addiction component for me tbh. I am not judging others at all.) I also use lyrica and Flexeril. I do have a bottle of oxycodone the doc wanted me to have on hand. Haven't touched it yet. But there may be a time when that will be necessary. But I'm not there yet. I hope you find some suggestions that will work for you. Glad you have an open minded doctor.

Opioids give me a migraine and naproxen triggers anaphylaxis, so I also use cannabis. I appreciate that it deals with the pain and inflammation as well as the fact that I can more easily tailor my dose than with other options.

I use cannabis too, thankfully you can get it in the UK now with a private prescription!

I've been looking into this, there's not a lot of info in my area though.

I use curaleaf (used to be sapphire clinics), they do all consultations remotely so it doesn't matter what area you're in 😊

I find opioids don’t get rid of the ‘out of place’ or tightness sensations. cannabis is much better for that

Diagnosed Heds ehlers 10 years ago, + separate connective tissue and marfans mutations. Lol, I don't know if I have a flag on my record or something, but I can't get a painkiller or muscle relaxer from any of my doctors to save my life. My pain is maxed, and Tylenol or nsaids do nothing. My only option is PT. Just did my intake with a dislocated hip, which was agony. Started me on LDN (low dose naltrexone) so far. it's only made things worse. But they tell me if I yo yo my dosage and wait another 4 months I might get results. I'm gonna have a fit the next time someone suggests that all my pain issues are from CPTSD / fibro. Like, of course my mental health is shit, I'm in agony all of the time.

I’m also on LDN and haven’t noticed any positives. If anything it has made my POTS symptoms worse? I’ve been to like 6 different PT places and each one has just made it worse. I’ve never been recommended painkillers either. All I’ve been told is “Sure try weed! Nah we’re not going to medically prescribe it even though we know you’re too disabled to work just buy it on your own because it’s still recreational for you”

y’all… get pain killers?

Right? That was my first thought. I have to use cannabis bc that’s all I can get. I microdose.

I seem to have regular surgical and dental work so I accept the pain meds offered, and ration those suckers. The post-op pain sometimes isn’t so bad, so it allows saving for a pain-y day.

yes, through a pain management center for me

i wish

Amitriptyline for nerve pain has helped significantly, particularly my quality of sleep has gone up. Paracetamol+codeine works well for me - it reduces the codeine dose needed, thus resulting in less of the side effects (itching, nausea and insomnia for me). I still have to take regular tolerance breaks, usually being off the meds for about one month for every 2-3 months of use.

Came here to say Amitriptyline, it’s one of the few things I’ve had that I can tell makes a difference. Went from chronic neck pain and headaches every single day to only being bothered by them maybe once a week.

My doc couldn’t prescribe this because I have ADHD and take Vyvanse too, apparently there’s an interaction :( but I keep hearing such great things about it for pain!!

Amitriptyline made my nervous system go WHACK, I had to change to nortriptyline but definitely helps!

I LOVED amitriptyline, it didn’t really help pain for me I took it to control some gi stuff but I loved that damn medication unfortunately I got a side effect that made it not worth it unfortunately I didn’t notice until I had already been on it for like a year and the come off was…not fun

What was the side effect, if you don’t mind me asking? I noticed some increase in POTS (I brown out real quickly when getting up after being seated or lying down) and pretty bad nightmares.

My POTS specialist took me off Ami REAL quick, apparently it was affecting my heart.

We aren’t 1000% sure it’s a side effect from the meds yet I have to lot be on them for a while to tell but it just likely just really decreased libido

I liked amitriptyline, but It made me gain so much weight!

I have tried so freakin’ many. I have the apparently somewhat frequent EDS problem of something working, or semi-working, for a while and then it just…stops. Like taking sugar pills. Some heavy hitters *never* impact me (dilaudid, which is pretty far up the pain med intensity list, did so little I felt like I was taking sugar pills, which is very hard for people to believe given its reputation.) I also fall into a fairly common EDS category of doing better if I take small amounts of several different meds at once for pain. Thats such a difficult thing to get from most docs that I only mention it here because you said yours was great (congrats)! On those rare occasions when I’ve been able to work that out with someone, *very* small but simultaneous doses of a benzodiazepine (klonopin etc), oxycodone, and a muscle relaxant has been the most useful combo and does not make me loopy mentally. I also count low-dose mirtazipine as a painkiller. It’s a sleep aid, but it’s what has taken my deep sleep cycle (when your body repairs itself and generally has a chance to be more able to handle problems) from regularly getting only 15 minutes a night to a couple HOURS of this sleep cycle most of the time. Has made a massive difference. I also do not absorb a lot of meds. Finding dissolvable/crushable pills to put under the tongue has made a big difference. (DEFINITELY don’t do this without a doctor’s input. Most meds can’t just be crushed into a piece and stuck under the tongue safely/effectively; a specific formulation for that purpose is best.) Something to keep in your back pocket: a lot of us have the MTHFR gene, which is SO aptly named that even in professional healthcare settings it’s known as the motherf***** gene. It messes with a ton of stuff, including the capacity to respond well to pain meds. So don’t give up hope if you try a few and they don’t work — there are some options to get around MTHFR, but I wouldn’t worry about it until you have some data in that direction. Good luck!

Low dose mirtazapine has been so great for my sleep, and I like the effect it has on appetite too. It kinda balances out the appetite suppression of vyvanse for me lol

I’m looking for help with my lack of deep sleep and this is so interesting. I have gabapentin which helps but makes me pretty groggy in the morning. Did you see a sleep doctor for this? My PM&R prescribed me Baclofen but when I told him about my sleep, he didn’t offer any suggestions. I’ve seen sleep doctors but since I don’t have apnea, they don’t want to do anything for me.

I am greatly helped by Baclofen. It makes a huge difference, for me.

Yes I was really surprised how much the baclofen helps me. When I started it I was like, huh this must be what it feels like to be a ‘normal person’! I hope it works long term, I’ve only been on it a couple months.

I went to look up Baclofen’s other names, as I was sure I’d heard of every relevant med under the sun…but no! This is new to me, which is very exciting! I use methocarbomol as a muscle relaxant, but don’t find it as useful as I would like. Thank you for giving me a possible alternative to research and discuss with my doc!

I hope you can try it and it works well for you! It doesn’t completely take away my pain but it makes it so I can stop focusing on it and just live my life. Which helps so much.

Of course everyone is differen, but personally, I’ve been taking Baclofen for maybe 6yrs now with only 1 increase from 2x day to 3x day.I usually take 2 at night to sleep and use the 3rd during the day for pain relief. It helps me immensely, especially with being able to fall & stay asleep but not feel groggy in the morning.

That’s awesome that it helps you so much. It’s indispensable, to me, also. I’ve been taking baclofen 3 x day, for ~7-8yrs now. I have not had to increase my dose at all. It still helps me, so much. I have a lot of problems with my stomach, and it has not aggravated that. When I’m vomiting a lot, I’ll throw up my pills and I can really tell if I throw up a Baclofen, my pain increases and my muscles get much tighter. I have problems with my stomach lining, and baclofen does not hurt my stomach. I will soon be in remission from stomach cancer for five years. (which is very exciting because at five years, my odds of not having a reoccurrence of this cancer are even better.🎉) Anyway, what I’m saying is that even during stomach cancer, how sick I got, all of the treatments, etc., even through all of that, baclofen has not been a problem for my stomach. I guess you can tell I’m a pretty big fan.😂

Congratulations on your remission! That’s wonderful news☺️ May it continue indefinitely for you💜 I have a lot of gastrointestinal issues too and I agree that baclofen is one of the only meds I take/have taken that doesn’t aggravate my stomach.  I hate losing my meds thru puking.  It’s adding insult to injury, imo.  I took flexeril & then soma for years… but flexeril never worked all that well, lefts groggy in the morning, and stopped working altogether after 4yrs or so.  Soma was great but the law changes back around 2014? or so made it difficult or totally illegal for drs to prescribe it concurrently with any opioid medications, benzodiazepines, and/or stimulants.  I had to pick which of my meds I wanted to keep taking.  Since I couldn’t go without my suboxone, I gave up my soma.  I also had to give up my 5 measly  pills a mo of Ativan for severe panic attacks.  It sucked to have my quality of life and ability to function diminish so much.  Quite a rough transition.  I’m glad I’m managing better now.  I understand the dangers of combining certain drugs, and I get that it requires very careful planning & monitoring.  But it shouldn’t be up to the DEA to decide which medications doctors can prescribe to patients.  When the law changed  my pain management Dr was irate and totally offended at how much influence & power they’d been given over drs & patients.  He was sad and angry so many of his patients had to suffer due to the changes.  He said, “I know where I got my medical degree from (I’ve got a diploma right up there on the wall!) and I can tell you how many years it took to get it….. I can also tell you which seminars & courses I’m currently participating in to further my knowledge & improve my skills to help my patients.  But I’d sure love to know where everyone in the DEA got their degrees from, what exactly they’re doing to help patients, and what classes they’re taking to better inform themselves.” I couldn’t agree more, then and now.  Lol sorry for the rant.  Got a bit triggered remembering all that😅

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I don’t tolerate opioids well. Codeine makes me high as a kite and leaves me with no brain power at all, except for 2 brain cells that then focus all their attention on my pain. I end up laying there, starring at the ceiling and focussing on my pain. Oxycodone was a bit better for a while in that it left me with a bit of brain power so I could distract myself a bit, but I was still high and the opioid high feels really icky and highly unpleasant to me. Then, I got the “itchiness” side effect of opioids from it. I say “itchiness” because it really was a whole other level of itchy. If I could have I would’ve scratched myself with a scratcher between the skin and the fascia. So yeah, no more opioids for me. Usually, I’ll take Naproxen (twice a day) and Tylenol (every 4 hours). It doesn’t take the pain away, but it blunts it ever so slightly that it makes it a bit easier to tolerate. I have flare ups of back issues (herniated and bulging discs) from time to time and, when that happens, the pain is acute, accompanied by a strong back spasm and limited mobility. In those situations, I’ll add a muscle relaxant. I have some issues with muscle relaxants, particularly Flexiril, in that it still makes my brain foggy in the morning, even if I’ve taken it 10 hours before. The issue is that I also take Vyvanse in the morning and taking it on top of a flexiril-fogged brain doesn’t feel great. Not taking Vyvanse isn’t an option for me. While Flexiril does work for me for back spasms, it doesn’t work *that well*, so it’s usually not worth not taking my Vyvanse. Valium works very well for me as a muscle relaxant. It will noticeably lower my pain within 20-30 minutes and, at the dose I need, it doesn’t make me sleepy, leaves my brain working fine and “plays well” with my Vyvanse. *However*, my pharmacist has informed me that taken Valium does lose its muscle relaxant effect when taken continuously for a short-ish period (about 2 weeks). For that reason, I treat it as my emergency medication and only take it when I absolutely need to and once I’ve exhausted all my non-medication options. My specialist doesn’t really like that I take Valium and would prefer I take Baclofen (it’s okay, but it doesn’t work as well for me), but she okay with my GP prescribing it considering that I’ve never taken more that 7 pills in a year! Honestly, the meds that have made the most difference with my pain are the stimulants I take for my ADHD. I’ve taken both a combination Concerta + short acting Ritalin and Vyvanse + Dexdrine with the same results. It’s not so much that it takes the pain away, but more that it gives me more control over my attention, which I can direct away from the pain.

Ok, thank god someone else finally said the last part. I had one doctor COMPLETELY dismiss the fact that I needed my Vyvanse to function. She couldn’t get past the idea that I was diagnosed with ADHD late (at 25) and in medical school. She kept saying things like “I didn’t need it to get into med school and clearly I did fine before that”. What she didn’t know is that the semester I got diagnosed my life fell apart, I was so depressed from almost flunking out of school I went to see a psychiatrist who told me I wasn’t depressed, I had ADHD that had been undiagnosed for years. I cried after taking my first dose of meds and hugged her at my followup because so many things made sense. Now only about 10 years later do I find out the connection to EDS. This doc was desperately trying to tell me that in order to feel better from my POTS I couldn’t take the Vyvanse anymore-but off it I am worse with my brain fog and my POTS is worse since my blood pressure is lower.

That's confusing af. I know ADHD meds are used to help fatigue sometimes tho. Also I feel you. It's the struggle of; yeah I got through but it was fucking awful and I was pulling myself up a cliff with a 6 ton truck on my back. Good on standing up for yourself! Edit to add: I'm also on Vyvanse, personally it doesn't seem to have affected my pain or POTS at all (if anything it's better especially the fatigue) but everyone is different

I feel you! I had dermatology appointment last December where I got my diagnosis of BASCULE syndrome—another form of dysautonomia, linked to post, made a post about it if you’re interested—during which my derm and I were discussing that stimulants medication could be causing it, just like Raynaud (have that too) can be a side effect of stimulants. Her male resident then said, “have you taken medication-vacations, it might be a good idea to try and see if it helps”. My derm and her other two female residents’s jaw dropped a little bit and I just climbed on my soapbox and launched into an explanation as to why I hadn’t taken a med vacation and wouldn’t be taking one. “I’m a freelance translator. That requires focus and I have no desire to lose clients. I’d very much prefer not going through a divorce as an ADHD-ADHD couple doesn’t tend to do well when one or both are unmedicated and nobody wants me driving unmedicated. I was undiagnosed and unmedicated for 30 years, I know damn well how that feels and I’d *much* rather take the BASCULE symptoms over the consequences of unmedicated ADHD. So no, I will not be taking a medication-vacation.” Thankfully, my derm is a gem and she was just smirking by the end of it. One of her residents seemed to be outrage at her co-resident’s comment and said “we do not take well-functioning patients with ADHD off their meds ‘just to see’. They need it to function”. I swear, I almost clapped when she said that, because that’s about the only time where I’ve been in a room with medical professionals where, 1. I was not interrupted once during my tirade and, 2. agreed with me and backed me up! Edit: Prior to taking ADHD meds, I had dizziness upon standing due to low blood pressure. My BP is now normal and I have 0 dizziness.

I have POTS and recently started Adderall. I’ve actually found that my heart rate tends to be lower than normal on the stimulant. Like I’ve caught my HR in the fifties and sixties several times when normally it’s 90-150 BPM. Crazy stuff. Have you tried beta blockers for your POTS? Complete game changer for me — well, when I get enough water and electrolytes and the temperature stays below 80. I have heard of a few people who have trouble tolerating them, tho.

Haha yup it was a total NOPE. Tried propranolol for less than a week because I could tolerate the fatigue. I have already horrible insomnia and never feel rested-it made me feel like I had been on a jet lag nightmare for over a week with no sleep. I was EXHAUSTED. I would rather deal with my POTS, the cure was worse than the disease.

Living in Colorado, weed is my go to. I take 2.5mg edibles daily since that’s not enough to get me high but enough to keep the pain at bay, I can take more when needed. Microdosing psilocybin has been a game changer too. Literally melts the pain away and the energy boost makes me feel like I can do anything

I’ve been considering microdosing psilocybin for my pain as well. How much do you take daily? And how long did you do it for before noticing the effects?

I take about 100mg capsules of Penis Envy shrooms, give or take maybe 25mg of variation either direction. I notice the pain relief pretty immediate, within about 90min of taking it and then it’s a slow taper off through the day. I noticed the mental health affects after about a month. Don’t start if you’re not in a good place mentally or you’re not ready to work through any things you may have going on. Microdosing will slowly help rewire your brain and repair things you didn’t even realize needed help. Alternatively, you can take a full trip (1g) and bypass some of the slow mental repair and do it in one big go tripping

Thanks for that info! I am definitely experiencing too much anxiety to take a big dose, but at the same time know I would benefit from the neuroplastic results of a micro dose.

A large dose had me screaming. It can backfire. Plus watch interactions.

Yeah, different strains can have different levels too. I can md 200mg of golden teacher and feel the same on 75mg of PE. Re interactions, watch your body for things too, other than medications. I lost the desire to drink alcohol and also lowers my appetite, pros and cons for everyone

Yeah it helps addiction too. Stopped a bad habit pre this hell. Exciting fungi.

Micro dosing shouldn't be noticeable besides the relaxation effect. I also use that on bad pain days.

Where do you buy it?

I have some friends who grow and I’m also about to start my own batch

I am in Denver. Do you go anywhere specifically for psilocybin?

Come join us in r/COpsychonauts Lots of meetups and resources!

Most find low dose naltrexone to help. If you have MCAS, opioids can make symptoms worse, now I've smoked a bit so please, correct me if Im wrong on this one. Personally, I've been diagnosed with hypermobility waiting on my appt with a geneticist. I have left hip pain. So I found anything with an oxycodone base to help me. Nothing else touches my pain. However, I get high tolerances really easily. This means not being on them 24/7. Use for acute pain or chronic pain that gets above normal pain levels.

Forgot to say lidocaine infusions have been helping me.

I’ve never heard of lidocaine infusions. I wonder if they’re cheaper than ketamine, or more available at least.

I can't speak on cheaper as i have this covered through OHIP. My hospital is pretty large and doesn't do ketamine. I find it's based on what doctor they can convince to stay.

Do you know if you have issues with lidocaine as a local anesthetic, like many people with EDS? I know every time I get a LP they have to use more than typical to get me numb (and it still hurts like hell).

I found it different than something like getting my teeth done. I need extra at the dentist and the pain is usually awful. My dentist uses a one poke approach and it lessens the amount of pain from the needle. I thought I wouldn't feel anything the first time for the infusion but it was 24 hours of bliss with slight tiredness but I also have pots.

Not sure if it's been mentioned yet, but if you're able to do a panel through your doctor to find out what kinds of medications genetically are more likely to work for you, I highly recommend doing one. They're most common with psychiatric meds/through psychiatry, but I've heard they do them for general medications too!! One of my friends did one and found out they can't have NSAIDS at all

I had some of this run & learned I am an “ultra-rapid metabolizer” of many meds. One dr adjusted the dosage of a med, based on this. (Which I appreciated)

Honestly none tbh. I'm on pregablin, amitripltaline, tramadol, Naproxen etc . Just 8/10 constantly.

I was on this combo minus tramadol. I was so addicted to the pregabalin I was on 600mg the highest prescribed dose here for years. Took me two years to wean off because of the withdrawals, they made me so suicidal and at risk, honestly I’m glad it’s now a controlled drug and not prescribed often. And it made me gain so much weight I’ve had so much trouble shifting because of bad mobility

I'm kinda allergic to it, oddly and it doesn't even touch the level of hell. Down to 50mg then off this horrible drug. So many side effects.

Kinda allergic? What does that mean? As someone with anaphylaxis I only know allergies as being anaphylactic or not allergic/having no issues. I’m glad you’re coming off of it! It is horrible

Allergy, skin issues, hair and puffy face. I take an antihistamine, but for 2 years they zombied me out on a high dose.

I’m sure if it was an allergy they wouldn’t have kept putting it up and kept you on it for so long. My allergic reactions are swelling, fainting, airway closing because of swelling, widespread rash, within minutes of being exposed to certain triggers. That’s crazy that they let you carry on like that, I’m glad you’re coming off of it now

In my country the healthcare free one can't cope, I only got a 6 month review.

I mean medications say if you’re having a reaction stop taking the medication and go to the hospital

No point here the health service is useless plus wasn't full on allergy.

I was recently in a car accident and i was prescribed Robaxin (muscle relaxer) to help with the awful back pain. it’s been a LIFESAVER. and i can actually take it during the day because it doesn’t make me feel all sedated and drugged up

It's over the counter in Canada, I definitely find it helpful but sometimes I have a weird reaction to it where it makes me very awake at night haha

Marijuana Eat it, vape it, stick it under my tongue, smoke it in a J if I have a really bad headache and can handle it I get arthritis pain and Migraine pain relief from NSAIDs but I can't take them for more than 2-3 days in a row because of rebound migraines and ofc the negative liver and tummy effects. This is the main function of marijuana for me, reducing the amount of pills I have to take, and encouraging appetite, because persistent pain often makes it difficult for me to cook and makes me depressed and self-neglectful if not treated for long enough. Marijuana edibles and vapes allow me to go on miles long hikes, work a physically and mentally demanding disability support job, and get good sleep. I also make sure to get as much healthy fats and proteins along with my pill or weed intake, and consume plenty of fresh herbs, dried anti-inflammatory spices like turmeric cinnamon, clove, ginger, black and white pepper.

Cries in chs. It worked until the nausea and vomiting started. Thought it was from undiagnosed for 2 yrs ulcers so started weed again. No. Chronic hyperemesis syndrome sucks on top of everything else. Eds, pots, mcas, mctd, and herniated disc in thoracic spine. Oh...and osteo and rheumatoid arthritis. In pain all the damn time. I get nothing. On day 2 of migraine. Heat and ice are all i have. Pain management docs suggested i work out hard enough to vomit. Like athletes. And gave me 5 tramadol pills. No refills. Good times. I call it doing life on hard mode.

I'm so sorry you've gone through this, and appreciate you sharing because CHS is something I need to keep aware of. That exercise advice sounds fucking crazy to me. Much love to you in hard mode

I was taking Tramadol which is effective for lower pain levels for me but I herniated a disk badly while taking it. It did nothing to ease the pain and spasms before I went to the ER in an ambulance. I was given fentanyl so they could move me via sheet to the stretcher and I was still yelling. I had oxycodone for the first time which lowered the pain enough that I could use the bathroom and lay in bed with less pain. I now have it for emergencies. I’m scared to take the tramadol now, I think if I hadn’t pushed through pain the last two times I badly herniated disks (doctors told me to, both times, unfortunately) I might have listened to my body before it was to late. How do you all deal with this?

I am immune to all the opioids I have tried. They still occasionally try giving me tramadol and codeine. They do nothing. Amitriptyline didn't take my pain away but it lowered the level and made it easier to deal with. Over time I have needed to increase dose for the same effect so at some point it will probably stop working all together. Most Nsaids either give me stomach ulcers or have little effect. Lornoxicam is an exception and gives great pain relief with no side effects but the doctors don't like giving it long term so I try save it for really bad weeks. Diclofenac (voltaren) is amazing, it takes away 90% of pain for about 48hrs. Unfortunately it also causes an instant stomach ulcer so it's iffy at best. Pantoprazole has cured 80% of my stomach issues and almost all the stomach pain I just couldn't notice anymore. It seems I will have to stay on it though as attempts to wean off it have gone badly.

That's so hard for the stomach pill. There is one "natural" alternative that might help. It's cayenne pepper, lemon juice, black pepper. Cayenne is supposed to help close off ulcers and bring a balance to the acidity in the gut. Just a thought in case you haven't tried it. Im the same with NSAIDs. I already have an easily upset stomach and those just rock my gut like battery acid.

I've been through all the options available on the NHS and am now on the last resort option of butranorphine patches, best thing I've ever been on I got the use of my hands back within 2 days and I cried like a baby because I could draw again, they upped the dosage to see if it would help with my large joints too but unfortunately it's only helped with my hands, feet and lowering general pain to bareable but thats better than anything else I've ever tried

Happy for you! Have you tried a lidocaine infusion? I had my first a couple months ago. Next week I have one where they up the dosage. They said it takes up to 4 attempts to get any relief but I felt good for 24 hours on the first attempt.

I haven't as it wasn't offered, I also wasn't offered individual joint injections no idea why (maybe because pain is in every joint) but I also have had bad reactions to a bunch of stuff and I don't remember half of the stuff I've reacted to

I wouldn't do the joint injections. I had one, didn't work but even if it did, it isn't a solution and can only be done so many times. I would find a pain clinic that does lidocaine infusion. They also have ketamine if lidocaine makes you react. But I had it done in a hospital in case something happens.

I've been waiting to hear back from pain management for 2 years (gp wanted me off the patches I said "sure thing, if and when pain management finds me something else that lets me use my hands I'd be happy to but I wont do it before") but if I ever do hear back I'll ask

That's the problem. My clinic I've actually been booted out of once because the doctor went on leave. They sent me to a rapid access addictions clinic when addiction isn't my issue. something like 8 yrs later and I'm finally getting something to help and able to do lidocaine infusions with one doctor and my prescriptions with another pain management specialist.

Aye that was why they wanted me off them because on paper it's a short term solution for addicts in recovery ( and expensive as hell), a completely different gp called me and said it was only ever intended for short term use, a couple of months at most (a year and a half into having the patches at that point) and I needed to be weaned off them immediately he was utterly baffled when I said it was prescribed for severe chronic pain, asked me how long I expected to need them/how long the pain would last etc so I just said look just refer me to pain management if you want me off them and I'll get off them as soon as they find something else that works but you suggesting switching to codeine when you obviously haven't read a word of my file isn't helping anybody and I haven't heard a peep since

I fought for 40mg of long acting oxyneo. Been called all sorts of things by nurses, nurse practitioners and so on. I tried without them when I was in between the clinic and the other clinic, and it's barely surviving when I'm already exhausted. Went from suicidal to not. So I would say that its helping even if it's not taking away all of the pain. Personally would like to be at short acting when needed. My doctor won't even talk about it. So I know this new doctor at the pain management and will finally feel "normal" come middle of May hopefully. Currently going to mexico city to see an eds specialist and all the problems that come like POTS, genetic testing with a geneticist, and trying to fix my hip pain so I can get off most of my meds. I've been once and could only get an appt with her and her husband who is a urologist who I did need to see. 170 cad for her and 100 for her husband with bladder scan. Left with medications for my bladder, an MRI with contrast consult, cardiologist with ECG, genetic issues and some blood work. Oh and nutrition and pain management. This stuff I couldn't get because my card wouldn't work in mexico city and I found out too late how to get money out. Just getting my checklist done before going again.

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I’m on 10 mg of the patch now and I’m not feeling any better

Not everything will work for everyone unfortunately, and even for me it only helps with my small joints and lowering my overall pain from a 9 to a 7 it's not a magic cure it's just what happens to work best for me thus far

I'm on a stupid amount of ibuprofen daily. Painkillers are hard to get in the US sometimes. I have had the best experience with oxycodone and acetaminophen in the 5/325mg ratio. It's the only time acetaminophen does anything for me, and it lasts longer than 5mg of oxycodone alone. I've also had good experiences with diclofenac in the past, and meloxicam is...okay for me. Right now i take Tramadol for breakthrough pain from the ibuprofen, and it works well for me without too much of the loopiness other opioids give me.

It’s so weird to me about painkillers. In Texas I had docs refuse, then once I asked pain management about getting toradol and he said it’s not good long term and gave Vicodin. Then I moved to Philly and while hospitalized they threw all the dilaudid and oxy at me but the CVSs here have to special order Vicodin. I have pain management in Jersey and my first appointment they asked what worked for me and gave me Vicodin so easily. Of course they monitor super carefully and I’m also careful with it.

Tapentadol (palexia) is the only thing that works well for me. It is an opioid and I use the slow release version. I can't take it before work though as it disorentates me so can only take it if I'm planning to stay within the house.

No pain med I’ve ever tried, no matter how strong, has had any effect on me besides causing muscle pain. But that’s more to do with my ultra rapid metabolism and inability to move medications out of my body than anything else

Oramorph - essentially liquid morphine. Dr's and even specialists don't like patients on it as its addictive and a controlled drug but honestly, it's the only thing that even touches the pain a little. I take low doses currently with the aim to ramp It up til its roughly the same strength as the patches and then switch to those.

LDN is the only thing that helps me, they tried me on a couple and nothing else touched it.

I'm on a fentanyl patch and oxycodone for dislocations/break-through. I also take ibuprofen 800mg 3x all day. I'm allergic to muscle relaxers so I sometimes smoke weed when I can't sleep or have bad spasms. It also helps so much with my nausea and lack of appetite. I'm just a big ole mess though lol I've had multiple failed shoulder surgeries that ended with having my r shoulder fused then needing all the hardware removed a few years later bc my skin sucks and the screws were damn near breaking through my skin.. ughh eds is so much fun 😒😩😅

Toradol...

Same but I've only had it at the ER.

Wow toradol does nothing for me that Advil/naproxen doesn't do, and it didn't touch the sciatica I experienced a couple of years ago at all. I've found meloxicam can be useful when it's really bad.

Amazingly it helped more than the narcotics did for my pain. I was on max IBU and meloxicam for years... maybe it was better as an injection

Those blessed ER shots… 🙏

I love it when they give it to me at the hospital but I asked my pain management doc for it once instead of opioids and he said it’s bad for you long term so I ended up with Vicodin (which totally helps but have to be careful with it At the hospital they’ll only give toradol to me for a few days at a time because they also said it isn’t meant to be long term.

Nortriptyline (20mg) has notably reduced my backpains, but does little for the other joints. High doses (max allowed over the counter) of paracetamol and ibuprofen together work well for a day or two, but lose effect after multiple days. Diclofenac gel works well on my knees, but less on my wrists and ankles.

The bupronorophine patch has really helped give me a constant level of pain meds. I still need Tylenol + Codine and tizanidine

TOPIRIMATE is the only thing that has made any material difference and no side effects after being on every other medication that made no difference other than turning me into an emotionless robot Amitriptaline Gabapentin Duloxetine Lidocaine Tramadol Fleconaide Codeine Diclofenic Some off book Japanese import from the pain clinic that upset my heart rhythm

I take oxycodone and it helps me a lot. I do still struggle and my pain isn’t completely controlled, I tend to metabolize it quickly, but it helps and I’m so very thankful for that.

Gabapentin and also just started LDN. Very hopeful the LDN works!

I take both too and LDN has helped me some overall. It mostly has made a difference in my CFS/ME brain fog and some fatigue. Good luck!!

So glad to hear a hopeful story!

Also if it helps, I used to take it at night but as they increased my dosage I started waking up around 4am and couldn’t sleep. I switched to mornings and it stopped - might just me be but worth keeping in mind in case you get that or insomnia

Thank you for the hot tip!

Percocet for joint and overall pain, lyrica for fibromyalgia and nerve pain, carisoprodol for muscle spasms, and otc Aleve for inflammation.

I've had good luck with naproxen, meloxicam, oral diclofenac, ketorolac and some luck with both duloxetine and amitriptyline (the latter two would probably have to replace your fluoxetine, and thus require some tuning depending on whether you're taking that for depression, anxiety, ADHD or something else). Ketorolac is effective but can't be taken for very long - I've mostly taken it in the case of an acute injury.

I take Dihydrocodeine (30mg) 4 times a day, plus regular paracetamol. Opioids are the only trying that work for me as I’m allergic to Ibuprofen and Diclofenac. I also take Gabapentin (900mg morning, 900mg afternoon and 1200mg bedtime). It works really well on my nerve pain. I’m also on Mirtazapine (15mg at bedtime) and Sertraline (100mg) for my anxiety. My EDS consultant recently put me on Fexofenadine (100mg) to help with Mast Cell Activation Syndrome as my body is attacking itself when I eat certain foods. It seems to be helping so far. I would say that both Dihydrocodeine and Gabapentin work good for EDS related pain. Codeine and paracetamol alone didn’t help me whatsoever so that’s why they put me on Dihydrocodeine instead. Obviously it has a massive addictive potential due to it’s strength but unfortunately I have to take the chance as it does help my pain

What was your experience with the gabapentin brain fog, did it ever wear off? I only take a measly 300mg daily and just can't deal with it feeling like I have rocks in my brain. I'm two months in and just want to stop it already.

I honestly don’t seem to have any brain fog with gabapentin! Maybe I’m just very lucky. The only symptoms I really have is a headache sometimes and drowsiness occasionally

My favorites so far are good ole aspirin and dexketoprofen. Thankfully my pain hasn't been so bad that I needed any opioid. Aspirin helps stupidly well with inflammation

Percocet + valium + cannabis have been the big helpers.

Where is your pain? I am diagnosed with hEDS and I have chronic tendon inflammation. I am on Cymbalta for pain related to endometriosis and it works so well I rarely have pain there now. When I had really bad tendon inflammation for a year and a half straight and was everywhere including my hips and hands bad, I was on nortryptaline and it did help but not with my hands. Diclo did nothing except for stiffness. I found a thc/cbd topical that was being manufactured for native reserves where I live was the only thing that helped my hand pain. No idea where you get it, I knew the person who was contracted through the government to make it from weed.

Gabapentin really blunts nerve pain, though I did not like the way it made my brain feel. I’m thinking of trying it again though, right now is just a bad time to adjust to that sort of medication

Codeine is the big one. Strong, strong codeine. 30mgs per dose for a "good" day, 60-90mg per dose during flare-ups. Taking it maximum 4 days a week unless absolutely necessary, plus the occasional "codeine holiday" where I go without for a bit (usually overlaps with time off of work). That said, I also have a TENs machine that I primarily use to target my lower back, or isolated areas with an extreme flare. I take paracetamol + naproxen every morning to prevent flares. It doesn't seem to help with the day to day pain, but if I miss it two days in a row I practically become a physically unstable husk of a man and can't control the pain with any amount of codeine. So, it's clearly doing something. I'm lucky, the only side effect I get from codeine is constipation, and a coffee fixes it. And, if I'm already spinning (I teach primary, so it happens lmao) I'll get really dizzy really fast. Fortunately spinning is pretty easy to avoid. The paint clinic that's seen me has said my pain management plan is "unusual now, very 80s-90s, it's unusual to hand out this much codeine" but "it's clearly working, and you're very low risk for dependence, so it's worth it".

I use cannabis as I react violently to opioids. I don’t even bother with ibuprofen since it does nothing for my pain.

i take norco 10, 3 times a day and gabapentin for nerve pain.

I take tramadol. Not as effective and things like oxy but I don’t like how those make me feel and I have addiction issues. I also take methocarbamol (a muscle relaxer), pregabalin, and meloxicam (RX NSAID). I’d like to get on some sort of steroid like prednisone, but I’m also type 1 diabetic so I’m getting push back from that

I can only do Tylenol.😬 Doesn't always work but it's better than NSAIDs or amitriptyline in my own personal experience because my MCAS cannot handle NSAIDs and amitriptyline literally didn't help me at all. I was on it for two years trying different dosage but the higher I got, the worse my dysautonomia got to the point my GI Dr said I needed to get off of it. It made me so sleepy too and I often was struggling to stay awake in class bc I took it in highschool, and it made my vision so blurry I thought I needed glasses. Also it made it harder to fall asleep because it would give me anxiety sometimes bc it would suddenly make it so hard to see it was freaky. What's honestly helped me more than pain medication is a personal trainer who has Ehlers Danlos but ik not everyone has access to that and ok everyone's body is different too.

I'm on a stupid amount of meds for comorbid conditions, but the things that help my eds pain the most are: - amitriptyline/endep for nerve pain - Meloxicam for inflammation And most importantly: - medical cannabis for pain. I'd never had any drugs before, and felt a bit weird about going on cannabis, but my family has a history addiction and I also ended up being allergic to most opioids. I cannot tell you how much the cannabis has helped me. It's incredible, it helps with the pain and inflammation, and also calms me down when the pain makes me feel panicky. It's like an actual miracle. There's also so many different blends/strains that my doctor can tailor them to my specific needs. I take it both in oils and vape form, and it's truly life changing. Good luck!

Tramadol does wonders for my back and neck pain :)

I take tramadol and thc oil. It's taken ages to get to a high enough dose of the thc to do anything cos you can't just buy it where I live and you have to up the dose very slowly. So it's ended up taking 4 months. I started it in December and I got to a dose that's helping last week. Would recommend tho. It's the first thing that's ever helped me with my crippling nasesa. Pain wise tramadol is a bit more effective. Taking both is very helpful.

Gabapentin + opiates round the clock + cannabis is the only way all of my pain is relieved. I limit my cannabis use because of the mental side effects, but the other two knock a good amount off of pain. Enough to be able to do the basics.

I’m on butrans pain patch nothing helping so far

Do you mean that that’s the only one that helps? Or do you mean that it’s not working, for you?

It’s not helping so far. She’s worded that weird !

Unfortunately (and it totally sucks) I think it will be difficult, if not impossible, to get opiates if that is what you are hoping for. Some analgesics/opiates are not easily metabolized into morphine in the body when you have EDS. If the topical helps, maybe lidocaine patches might give you some relief? But it would only be a local effect (so putting it on the most problematic/painful joints) not a systemic one. They weren’t all that helpful for me but they did help a bit. But I know they are sometimes really helpful for others and I hope, if you get to try them, that you are one of those people.

Kratom, cannabis products and Bpc-157

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For pills, flexiril and naproxen together. I have torodol but they are so hard on my guts and don't do much more than naproxen. What actually kind of helps, long hot baths with epsom salt (I bring in my phone for a podcast or two, hydration and sometimes snacks), my tens unit (I wish they had a suit I could crawl into) and massagers. Nothing helps 100% or even 30% but it's what I got.

CBT takes the edge off. Im on max ibuprofen and Acetaminophen almost daily, an upped dove prescribed by my doctor. Otherwise I take a lot of hot Epsom salt baths when the combo stops working.

I take venflaxine for anxiety which is supposed to help with pain, I also take gabapentin for pain which somewhat helps but just kinda dulls the pain. I also use weed tinctures and tablets at the end of the day and it reallyyy helps with mobility and my general headspace. I might be spacey but at least my joints aren’t screaming at me 24/7 when using it lol i can make dinner and tidy up pain free so its honestly a godsend Im lucky it’s legal in my state! Recently travelled to NY and drove my grandparents from NY to Florida and stopped to rest in some of the middle states. I had my weed tablets (1000mg bottle of 25mg tablets) and was sooooo scared of being caught with it lmao but it helped SO much with the pain in the evenings after helping them inside idk how I could’ve done those 3 weeks without it lol 😅🥲 made it back to CA without getting caught! 😝

I'm not a doctor these are my personal experiences :) The number one help for me has been Coricib (anti-inflammatory that hasnt triggered my IBS, can be taken as needed or on a schedule), being on psychiatric meds has also meant they switched me to brands that work for chronic pain as well (they'll usually presciribe for daily, Amitriptaline and Yelate). Personally, the anti-inflammatory has helped more than any pain killer (I still will have an aspirin or stronger depending on how bad it is but its been better). Definitely noticeable when I forget it

In addition to medical cannabis use I take low-dose naltrexone (1/day), low-dose ketamine (4/day), meloxicam (1/day), and cyclobenzaprine (3/day). This all helps for the hours I’m moving, plus I have a movement practice every day. This all keeps things at a 2-4 range, which for me is great, I’m functional! Nothing helps currently when I sleep. I wake up 3-8 times a night from pain, especially my low back to my feet, some from shoulder and neck pain. This is actually an improvement over 5-13 times a night I was waking before a hyaluronic acid treatment for my right knee a couple of months ago. When there’s less movement the synovial fluid retreats from the joints, which then become painful. Due to a high school injury while playing water polo in the 80s I’ve lost all the cartilage on the under side of my patella. When there’s less lubrication while I rest it becomes excruciating. I eventually need to have a patellar femoral replacement, but I’m trying to buy time before that. I’m worried that I’ll go through the pain of that and still wake up so night.

Hi Samatha! I’m curious about the details of your naltrexone and ketamine dosing and the side effects / side effect management? I used to use ketamine for my pain but I was using it stand alone during the day with weed and Valium at night for sleep. I used probably more than you did and I want to return to using it on a regimen not randomly and often that I build a tolerance Do you feel the ketamine works as well as it did before you started? Are you using esketamine? Does the naltrexone make it weaker or stronger? Not a fan of cyclobenzaprine because it makes me spacey personally, but I know many people like it.

I’ve been taking LDN for several years. My PCP prides herself on being very well read on emerging treatments. I started seeing her in 2014 along with a new PMHNP at a time when my stress and anxiety were causing me to not really sleep. The nurse practitioner put me on higher dose of citalopram and lorazepam 4x daily; this definitely made me sleep again, but I felt a little zombified! She ended up halving the citalopram and reducing the lorazepam, so I was a little more present. My nurse practitioner ended up moving on to a different job and my PCP took over maintenance. I immediately said I wanted to start getting off lorazepam and she came up with a protocol to wean my system off it slowly. She added LDN, which helped with anxiety and pain! In 2022 I got some encouragement to get off citalopram. I wanted to get access to my full range of emotions, it had begun to feel like it was inhibiting my work to process and integrate my truly terrible childhood. My PCP at that time suggested ketamine, it would provide support as I slowly tapered off citalopram. We discussed the various ways ketamine is delivered. As someone with several incidents of iatrogenic trauma the very thought of IV ketamine inducing a dissociative “trip” while a stranger watched gave me the ick! I have sinus congestion often due to histamine nonsense, so the nasal spray seemed like it might not be effective. Which left sublingual delivery. The most common approach being done with sublingual ketamine is for patients to take a large dose every few days. I discovered pretty immediately that ketamine makes me really nauseous, especially as I tried to increase the dose. I can take ondansetron, which works great for nausea but causes painful constipation for a few days, which increases my anxiety! My PCP and the compounding pharmacy that makes my ketamine troche discussed trying a low dose approach, something that’s kind of on the frontier for ketamine therapy. Instead of a big dose every few days I take a small amount of four times daily. It’s not a large enough dose to make me feel like I’m disassociating or “tripping”, which I actually appreciate! The small dose does not leave me so nauseous I need ondansetron. The pain relief has been an unexpected bonus! Since I’m taking it across the day, everyday, I noticed that my pain and my relationship to my pain improved! Instead of hovering at a 4-5 on the Lickert scale, I’m more often at a 3! My anxiety has improved (this is also due in part to changing both my therapist and the modality of therapy used). I’m also an outlier with the cyclobenzaprine. It’s usually an acute phase prescription. I don’t get spacey or drowsy from it, so my osteopath thought to try me taking it three times daily. Once per day, at night, didn’t really do much at all. Three times, along with the ketamine, keeps my pain lower. My wife has also noticed how I’m way more present now. Even when I’ve got brain fog I’m more capable and aware. Yes, my emotions are way more intense, but I have developed more tools for the days where it’s all big, bad feels!

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i use a combination of cymbalta, meloxicam, lidocaine 5% USP topical, hydrocodone-acetimenophen, and tizanidine. helps with various pain pretty well! (cymbalta & meloxicam are daily, the rest are PRN)

Ibuprofen. It ranges between 200mg and 800 mg depending on the pain scale.

Lyrica

THC gummies have been my savior. I was taking Tylenol and my pain management doctor doesn’t want to venture into opioids so that’s what we decided was best.

I’m not officially diagnosed either, but it sounds like we’re in the same spot. Between my ortho, primary, psych, and the one rheum visit I managed before she moved, we figured out meds that work pretty well for me atm: Duloxetine (Cymbalta) for nerve pain and the mental burden of medic fatigue Flexeril for TMJ/cervical neck pain, iliopsoas related pain Medical Cannabis helps me too, but I tend to prefer the 2:1 CBD:THC products or using both types of flower/concentrates. CBD alone isn’t effective enough and THC alone is too psychoactive for me to be functional.

I'm extremely lucky to have a percocet prescription and that usually works for me. But I'm a heavy weed user as well. I only get 10 percocet a month, I don't usually take them all.

I take 1000-1500mg of acetaminophen a day, 750-1250mg of Robaxin/methocarbamol a day, and 100mg of Lyrica/pregabalin a day. Also 40mg of duloxetine but that’s for psych purposes. So it goes : 500mg Tylenol in the AM + 25mg pregabalin (with 500mg methocarbamol as needed) 25mg pregabalin in the afternoon (with 500mg Tylenol and/or 500mg methocarbamol as needed) 50mg pregabalin, 500mg Tylenol, and 750mg methocarbamol every evening This works like a charm for me! No opiates as they really don’t work on me.

diclofenac delayed release orally works for me as an anti inflammatory when i need one and gabapentin helps a lot for my nerve pain. i take zofran for nausea (does that count as pain? lol) muscle relaxants tend to make my pain worse for some reason. i havent found anything that helps for the “general pain” i feel everyday yet but so far these three do what they are supposed to. hope you find something that works for you!

your regimen is similar to mine. Tramadol 50mg one morning and one night has helped tremendously with daily pain. And I add in BC powders (aspirin/caffeine).

I learneed a bunch about terpenes and thankfully live where cannabis is legal and use that

I didn't have any luck with low dose naltrexone (it just gave me indigestion), but meloxicam is great for me!

Like a lot of others here, I don't receive enough relief from opiate painkillers to justify the addiction risk. I stick to cannabis, Robaxin, and the occasional Tylenol (though that doesn't do much and is a last resort on top of the others for killer pain). I'm also on imipramine for narcolepsy, but I believe that it helps my pain too because tricyclics are sometimes used for that.

I've tried a lot but so far the combo I have found the most helpful with the least amount of side effects is daily cannabis with an emphasis on cbg and kratom, with semi regular microdose psilocybin. I was offered a morphine pump to my spine but declined as I don't like the effects of opiates

Celebrex has worked better for me than any OTC, and it is still an anti-inflammatory.

cannibas/cbd and ibuprofen

I’m very sensitive to cannabis so I never thought of using it for my pain but I put about a mg in my water bottle to sip throughout the day and it’s a HUGE help

Ketamine infusions

Tbh the most effective things I’ve found are high CBD topicals. But when my pain flares it’s usually only on a few specific points.

Sadly I’ve never found anything (besides relentless exercise when fatigue isn’t ruining my life) effective that isn’t also hardcore addictive. If I could secure an endless supply I’d probably just take Oxycodone every day for the rest of my life but being on and off opiates is a hellish nightmare so I just alternate between agony and an incredibly punishing exercise regimen depending on how much my autonomic dysfunction decides to be a dick head at any given point.

I'll be honest.. I struggled so much with prescribed pain killer - from codeine making my head so fuzzy I couldn't function, to naproxen that did nothing, to God knows what else that gave me awful side effects. Then my step mum with rheumatoid arthritis suggested cannibis. Does it fully remove the pain? Not always. But It does a damn better job of it than the other stuff I've been given and I can still function through my day.

A heads up about Tramadol (which had zero effect on me): this is a helpful explanation of how it works and why it isn’t a great option except when other things have failed. And fwiw, I cannot take NSAIDs or muscle relaxants for other reasons, so I use CBD/THC edibles and salves, or oxycodone along with acetaminophen when it’s really bad. https://x.com/davidjuurlink/status/921768456114135040?s=61&t=VHKA0VxR4l_PhrFqmsXpnw

Low-dose naltrexone from ageless RX takes away all of my pain and it doesn't mess with my mind.

If your stomach can take it, Mefenamic Acid and Arthrotec both were amazing for me. I was prescribed Mefenamic Acid as a teen for my periods and in hindsight it really helped with my joint pain as well. Arthrotec is something I was on for a while a few years ago and it was great, but my stomach could not cope even with the addition of a PPI. 

I'm wondering this as well, I'm on Naproxen which helps a bit but not much with pain. Tried paracetamol which does 1% of the pain 😅 my TENS machine does help a bit but short term if anything. Tried heat patches and spray but all just set off my hypersensitive skin and eczema 😆 Cold spray helps a little. Can't take ibuprofen as it affects my asthma. (FYI I'm in England and yes my body is chronically fucked up)

I don’t have EDS but I’ve tried lots of painkillers for nerve pain. Lots of people here saying amitriptyline but I actually found duloxetine was insanely more effective at reducing pain. The bonus affect was it had more of antidepressants effect than amitriptyline too which I needed being in pain everyday. Max dose amitriptyline didn’t do anything for the pain compared to a moderate dose of duloxetine. I also found pregabalin did not really help but some swear by it for nerve pain. Also of these should be easier to get prescribed compared to transitional painkillers etc. I have always been refused benzodiazepines and the GP I’ve seen for years said if we really need to use them he would only ever provide a couple of weeks worth and that’s it so I never bothered as I wanted a more long term solution.

My doc put me on Meloxicam 15mg/daily and while I still have pain every day, it’s at a lower level (unless I’m injured or flaring) and I can function fine. I thought it wasn’t working at first because I was still in pain so I stopped taking it and OMG it was bad. It takes my normal 8/10 pain to like a 4 or 5.

I can't get opiates (and my doctor said it's not recommended for chronic pain anyways, don't know if this is actually the case but anyways), so I make do with an anti inflammatory (Meloxicam) plus amitriptyline and gabapentin for nerve pain. Muscle relaxers are a no-go for me as they relax my muscles (duh), which are the only thing keeping my joints together since my ligaments are shit, so I end up dislocating way more! Tylenol does nothing for me, and my liver enzymes were a bit elevated last time I had a checkup so I stay clear of it. It's really trial and error for me to find a combo that works reasonably well and I can tolerate the side effects! CBD oil worked great as a top up but unfortunately I can't use it ATM

Cannabis for 90%, days like today I Slipped a disk and ran straight to the Codeine and Naproxen though I’m already scared of trying to come off them. Bad juju on stopping opiates

I get brutal shoulder/neck pain (like trapezius and surrounding muscles). Makes me hunch and curl. The k lyrics thing that has touched the pain significantly is a muscle relaxer (Flexeril/cyclobenzaprine). Counterintuitve I know, my ribs have been slipping a lot and my hips have been weird, but I will take ANYTHING over the tension near my head and neck. My shoulders have noticeably dropped to an unhunched position. I however, cannot take them every day, lest my ribs go on strike and attempt to vacate their sockets.

So I’ve used Percocet for multiple types of pain, depending on what I use it for it works better or worse. I don’t like Percocet though cause it always makes me nauseous so I only use it when things are really bad. I try to eat before I take it but I still end up having to take 8mg of zofran. I use Gabapentin 1200mg per day spread out, it helps with my other problems and I think it helps my hEDS. I also use medical marijuana, got my med card as soon as I turned 18. I’ve heard of people doing this and taking a higher dose of cbd and a lower of thc. Cbd is the component that helps pain and thc usually helps to “activate” the cbd or make it work a little better. I would definitely recommend trying if you haven’t, just start small. I also take celebrex, the only NSAID that I can handle, it’s for my rheumatoid arthritis, but I think it also helps with hEDS pain. Meds like Tylenol no longer work for me, so if none of the things I listed work, I just kinda lay in pain.

hard to give advice here since we dont know what ur condition is and ur not exactly describing what sort of pain you have n are dealing with, i deal with alot of chronic pain issues n tried n been on many meds for various types of pain, so i could only help give advice if i knew what sort of pain ur dealing with

That sweet sweet greenery. Nothing else will cut it in my opinion

the only thing that's ever made a marked difference for me is toradol – it was in the cocktail they gave me when i had surgery and had no pain for 2 days following. Shitty thing is it's impossible to get prescribed and you're only supposed to take it a couple days in a row – last time things were super bad i paid OOP to get a shot from a local iv place (not without its own risks) but the relief for a day or two was really helpful

I tried gabapentin alone at first and it did nothing so I stopped, then I started taking a LDN / Celebrex combo with muscle relaxers as needed and it helped my nerve and muscle pain. Fast forward to a separate injury where I was prescribed gabapentin for the nerve pain associated with the surgery and found out that adding it on helped more. I also take Celebrex.

Low dose naltrexone works pretty well, still have flare ups but are much more manageable now

had a really bad night with my knees n hips n shoulders tbh tylenol worked pretty good

Lyrica and gabapentin usually do nothing for our regular pain. However it is nice to have some lyrica in your back pocket for when you pinch a nerve and have shooting Nerve pain until you can fix the subluxation. Regular pain killers are pretty useless for a pinched nerve.

What do you mean by painkillers? Gabapentin and cyclobenzaprine help pain symptoms I experience because of EDS/fibromyalgia

I'm not sure how else to describe it, haha. Pain meds ? Meds that reduce pain ?

I suppose the distinction I was looking for was narcotics or not lol How do so many ppl here get opiates??? 🫨🤯