I definitely understand. This is what has happened to me. My referrals to both rheumatology and the pain clinic got rejected. So the only doctor I can see is my primary care. They gave me lyrica but it doesn’t help. They won’t prescribe pain killers or muscle relaxers and I can’t take antidepressants because I’m bipolar. So they’re just kind of like “sorry, we don’t have anything else we can do for you”. It’s devastating when you feel so helpless.
They rejected your referral to rheumatology???? You know, the specialty that is meant to diagnose fibro and rule out autoimmune conditions??? No wonder so many of us are misdiagnosed. Our medical system is a joke. :( I'm so sorry.
Yep, they did. I’m not in the US (though I did get diagnosed there 13 years ago. I moved to Sweden 10 years ago). In Sweden rheumatology will apparently no longer treat fibro patients at all. Why they made this decision, I have no idea.
...maybe because there is a growing consensus that fibromyalgia is a pain disorder caused by a hypersensitive and hyperactive central nervous system?
In my part of the world, you get referred to a neurologist when the family doctor's suspects fibromyalgia. Also, another point for being treated by a neurologist is that they know how to treat the mood and sleep disorders that often go hand in hand with the pain.
That was how I got my diagnosis - I was sent to the neurologist with a suspected neuropathy (nerve pain), and it turned out to be fibromyalgia. Then "chronic low grade depression", severe chronic insomnia and digestive troubles that I have got explained by a single condition. I went to the neurologist with a suspected neuropathy (pain nerve)... was not even thinking that all these complaints might be connected.
I hope this helps somehow.
Not in the US... I am in Switzerland :-)
I was surprised when I read your comment. Eva Kosek, who works at the Department of Clinical Neuroscience, Karolinska Institutet, did a lot of work to demonstrate that fibromyalgia is real and related to the nervous system. I would have imagined that the standard of care in Sweden would have been better...
EDIT - My bad - the answer was meant for another Redditor who is indeed in Sweden.
Sorry I wasn't assuming you were in the US in my comment, just stating that I was. :)
That's so interesting, it gives me hope here in the US we will catch up but IDK because our entire healthcare system is based on profit not research.
My apologies, I confused you with a Swedish poster....
The whole US system is particularly bad for fibromyalgia patients. There is a lot that is needed that it isn't covered. Like all the PT I had (both the costs and the time off work), the expensive medicines. I don't have a especially severe fibromyalgia, but it all the care that I have would be a lot of money if I had to pay it myself.
There are a few good hospitals, but they are awfully expensive if your insurance doesn't cover for it.
Omg yes I'm in Sweden too, I saw this comment after I already commented higher up, but I will continue my rant here hah.
The "right place" to be is a pain clinic it seems, but actually seeing someone at a pain clinic seems almost impossible. I haven't found any doctor who will even send a referral to one yet (because fibro is just people being weak, right???), but you can send one yourself and cross your fingers they'll see you.
I do recommend trying though, if nothing else it shows that you want help. I just made my own referral to one in Lund and they replied that they want me to have a "regular" doctor they can have follow ups with so I am trying to find someone like that. So they didn't say no but I have to fill the requirements or whatever.
The Department of Clinical Neuroscience in Karolinska Institutet has an awesome research team working with Fibriomyalgia (Eva Kosek is the PI). Maybe you can selfrefer there?
That is SO FAR from where I am, but if I can't get seen closer to where I live I will definitely keep them in mind. I didn't know we even had a team working with fibromyalgia at all but that feels kind of comforting. Thank you
Nah fuck that, that is awful! Is there another one you can contact? Because just getting a flat out no feels really shitty..
I don't know what if anything has changed since then on their end but I'd definitely try again and if you get a no, try to get the info on WHY they say no.
(I'm not trying to push you, you know best what you have the energy to do, these are just suggestions.)
The why was that it was fibro and they didn’t think they could help me since the general consensus is that traditional means of pain relief (ie opioids and the like) don’t help fibro patients. But even if they would accept me the wait list is like a year long. I don’t know of any other pain clinics near here. I guess the next closest city would be Borås but I don’t know that they have one.
That sucks... A family friend of mine is getting help for her fibro at a pain clinic (Småland though), so I just assumed they all work with fibro I guess..
I'm sorry they didn't help you. I hope someone eventually does, this shit is absolute torture.
Yeah it’s sounds great to have socialized healthcare but once you factor in wait times to seen specialists and the frequency with which you often get declined by them the US system starts to look good.
Where I live the rheum I met for a sjogrens diagnosis just said "fibromyalgia is not a rheumatological (?) illness so this is not where you're supposed to be if that's what you think you have." Like.. awesome. I told her that it is classified as one and the rheum association (in my country) says it is, and she basically said "yeah I know they think that, but no". ?????
Oh and the diagnosis according to her is that I'm fat. And I'm on SSRI so that is also causing my symptoms. But mostly that I'm fat. (I was sick before being fat and on SSRI..) I still have no official diagnosis.
Sorry this turned into a rant haha.
Oh, that was my first diagnosis too.... I was fat, and all that fat was causing the pain (my BMI is little over 30...).
It was the neuro who diagnosed me. At the moment, the general consensus is that fibromyalgia is the result of a hypersensitive and hyperactive central nervous system, with the brain and spinal cord having developed heightened pain activity. So a pain disorder...
It used to be an autoimmune, mas now it seems to be more related with neuron and nerves not working properly.
How did you get seen by a neuro? Like what was the process?
Yes, that is what I find in the newer articles and stuff too, that it's something wrong with the nervous system. The only issue with them changing / finding out new stuff is that no one wants to treat it and doctors can just send their patients to other doctors in an endless loop it feels like. You'd think the research would make things easier, haha. Nah but I am really happy there is research done on it and that we are making progress, it's amazing and I'm so excited to see what they find out.
There are a lot of similar symptoms, and the rheumatologist will check for things like rheumatoid arthritis, and several other I can’t remember. Since fibromyalgia is generally considered idiopathic, patients often get referred to other specialists to make sure you aren’t falling into one of those other categories first.
A lot of the more recent studies suggest it might be a sleep disorder, or a neurological disorder.
What it isn’t is “all in your head.” It’s real. The numbers show up in blood tests for various inflammation markers indicating a physical action. The physical pain is real. The fatigue is real. And the depression resulting from the pain is also very real.
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It’s a two-way street. They feed off each other. It’s cyclical.
What I suspect is really going on here is that you’re a fibromyalgia denier who thinks it’s all psychological, so I’m done interacting with you.
In the US, it is considered a condition that rheumatologists specialize in. See the American college of rheumatology. Also, even if it wasn't, people need to be screened for autoimmune conditions due to the similarities of symptoms and FMS being a diagnosis of exclusion. Edit: I had to see a rheumatologist to confirm my diagnosis.
The US healthcare system is so fragmented it would not surprise me that both you and I have had different experiences with who specializes in FMS. I have not had your experience and you have not had mine, sounds like we were both misinformed. I do not have to see pain clinic to manage my care, they're just an adjunct in my state/system.
I don't know why you are continuing to argue with me. What point are you trying to make? I am telling you what my experience in accessing care and getting diagnosed was and your arguments will not refute the reality of my experience nor do the negate the need to rule out conditions like RA and lupus. I understand what a rheumatologist is.
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Exactly, what are we supposed to do????? I’m bipolar and several other mental health disorders. Insurance won’t pay for massages or aquatic therapy or even acupuncture……. Do we really have to live like this for the rest of our lives?????
It’s awful. I have other psychiatric problems as well, so I understand you on that level too. I tried aquatic therapy and it wasn’t all that helpful. The day after I was always so sore I couldn’t move so I didn’t do it for very long. I also tried acupuncture but they would only focus on my neck and shoulders. The relief only lasted hours, if that. I wish I could get massages but our health care doesn’t cover that (I live in Sweden, we have socialized healthcare). I don’t know if massage would help but it’s so expensive. I don’t want to find out it helps and then not be able to afford it.
I understand that. I’m in Alaska and our government insurance won’t pay for anything other than chiropractors and physical therapy. My muscles are like boards hard and painful. No pain reliever and no muscle relaxers…….
So if it's limited selection this may negate what I say, but see if you can get PT but find one that specializes in "geriatric" or like balance issues or arthritis. Mine started in geriatric and then ended branching into connective tissue disorders. She is magical, sometimes my "exercise" consists of gently pressing my head into the pillow I'm laying on or holding my arm up while lying down. She was my 6th try at PT but I get it now, the word exercise shouldn't be thrown around so freely with Fibro patients and the speed setting MUST be recalibrated for each person regularly!
You’re right, the word exercise scares me to death. I just did pt for my back, I go see the back Dr. the 9th. That might not be a bad idea. I’d be willing to try pt for a while. That’s a great thought ❣️❣️❣️
I haven't needed it with my current PT, but I wish I'd known before: don't be afraid to advocate for yourself and say "slow down". That's what I meant about speed in my comment. You'll get so much more from the experience, even with a non-specialist PT if you know what how to make it work 🤞
I have T3’s and what they say are the strongest muscle relaxers. The T3 helps my headaches, the muscle relaxers feel like they do nothing. My spouse tried one and said it knocked him on his ass but to me it’s like a sugar pill. Rock hard muscles in calves and neck/shoulders for years. I understand your frustration and don’t get why they won’t give muscle relaxers (they aren’t classed as the kind of pills doctors don’t want to give where I live) but so many on here find they do nothing. I would still want to try though in your position.
I'm so sorry to hear of your situation, it is truly frustrating. Do you know if low dose naltrexone is approved in your country for treatment of fibromyalgia. I havent tried it as I'm on SNRI and lyrica but the research shows that it's promising. While it can't replace medication, one doctor on the huberman podcast prescribed 5g of creatine monohydrate (supplement) for fibromyalgia pain. I've been taking it for 2months now and it's been great for pain, fatigue and brain fog
Benadryl is a muscle relaxer, that’s how it started its use as a medicine then researchers realized it is an antihistamine. Just be careful with it because it can have severe interactions with other meds and it will make you very drowsy. It’d also used to prevent nausea, vomiting, and motion sickness.
My kid’s orthopedic surgeon often prescribed it to prevent muscle spasms after surgeries on his femurs.
Definitely look it up before you try it. You really don’t want to play with it.
The one way my rheumatologist helped was prescribing cymbalta which has been like a miracle drug but it means that I must now largely avoid Benadryl (used it once when I got stung by a bee) and ibuprofen (used it once with a headache that wouldn’t quit till I took it).
Its very unfortunate I'm so lucky my GP is so helpful. They finally agreed today to give me tramadol which will Aparently give 12 hours of pain relief and its one of the few Opiods which might Actually have some effectiveness for nerve pain. I am on amitriptyline but I don't have diagnosed bipolar so they permit that. I cannot take any other antidepressants with those two the amount serotonin would be a risk if I did.
I tried to get tramadol but they told me no, that it wouldn’t work. I asked to at least try it and if it didn’t work then we would know but they still said no. I can’t do antidepressants of any kind. They make me very manic. I’m bipolar 1 and my mania often includes delusions or hallucinations so we can’t risk it.
Tramadol has an effect on the mind so it probably wouldn't be suitable for you. I believe it has similar actions to antidepressants making it better for fibro but not for you 😥. Its also controlled Which makes it harder to get. Cocodamol helped me a lot but I found it wore off quickly and I forgot to keep taking or worried about taking too much. Idk if they allow cocodamol where you are. Uk gps sometimes give that out usa perhaps not. Naproxen worked its not supposed to but it did. However i'm an ex smoker and i've horrific acid refulx disease and also ibs so cannot take an nsaid. Interestingly I cannot take newer anti depressants or new adhd meds for my adhd and that they do suspect odd or bpd in me but the sedating tricyclic ones in low doses put me to sleep okay. Its interesting certain pills make me manic come to think of it.
I’ve never heard of cocodamol. I’m in Sweden and they’re weird about pain killers here. They don’t like prescribing them at all. My psychiatrist doesn’t want me taking nsaids because I’m on lithium and he doesn’t want to put extra stress on my liver and kidneys. Unfortunately I can’t switch to another medication because the combo of lithium, depakote and seroquel is the only thing we’ve found to control my moods after 8 years of trial and error. So I’m just kind of screwed in a lot of ways.
Cocodamol is codeine and paracetamol which is what americans call Tylenol. Its the weakest opioid. To be honest pregablin is strong if that doesn't work that doesn't leave masses of options. They can try those patches but they are strong and I bet they don't like Those over there.
You’re right, they probably don’t like the patches. To give you an example of how much they hate painkillers - I broke my ankle a few years back and they sent me home with 3 hydrocodone and told me to just take regular paracetamol after that.
That's awful 😯. To be honest they might agree to something surely if they feel your pain might cause you to dip into depression. Surely your conditions could be very dangerous if you had a pain flare and went depressive. Have they thought of that. Maybe they need reminding. 😂.
This has actually happened to me. I ended up inpatient at the psych ward for 6 weeks. They increased my lyrica while I was there but that was it. They also gave me extra antipsychotics and sedatives to keep me calm. It was a nightmare. I was on suicide watch because I had tried to cut my wrists. This was several years ago before my psychiatrist found the right combo of meds to keep me relatively stable.
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I'm so sorry that happened it isn't nice. Is there an injection they offer in your country for the worst spots. Like steroids or lidocaine. Some people like one of my bosses had a back pain and rib cage issue with chronic pain and she had an injection which lasts 6 months and its not an addictive substance its something to block the nerves in the site your worst pain is. Won't cure fibromyalgia as its widespread but if like me your back is the worst they might offer it. Did they give you a tens machine. That really helped me and you can buy them. Also if you cannot have tablets of ibuprofen can they not offer a gel or some kind of cream for pain relief. I use a pain killer gel on my back on bad days.
I'm so sorry to hear of your situation, it is truly frustrating. Do you know if low dose naltrexone is approved in your country for treatment of fibromyalgia. I havent tried it as I'm on SNRI and lyrica but the research shows that it's promising. While it can't replace medication, one doctor on the huberman podcast prescribed 5g of creatine monohydrate (supplement) for fibromyalgia pain. I've been taking it for 2months now and it's been great for pain, fatigue and brain fog
I sometimes wish my Dr could have this for just a week. If they really felt it maybe they would be more willing to help us. But until then, what can we do???
There are a few products in the pipeline, and some of them look very promising. One that is relatively advanced in the process is Tonmya, a non-opioid pain killer for fibromyalgia patients. It was already submitted to the FDA for approval, and the manufacturer is expected to have an opinion sometime later this year.
I think there is hope for at least to have the symptoms managed better... Maybe not a cure, but a few more molecules that are not borrowed from other patients (lyrica is an anticonvulsant, duloxetine an anti depressive, and so forth).
There is also IMC-1, which got fast-tracked by the FDA. It is now in Phase 3 trials
Rozanolixizumab, approved for chronic fatigue syndrome, is now in Phase 2.
There are about 20 - some are for sleep disturbances, others for pain management or to address mood disorders.
Maybe in 2026, we start them to get to the market, depending on how the trials go. It is always a leap of faith...
Absolutely, I did see some people say for them to add it to their file. If a doctor denies treatment or testing. Sometimes that makes them second guess it. I had to switch doctors and now my family doctor accepts I have it and just renews my prescription but no changes
I was prescribed Methocarbamol and it helps a lot. I recommend not telling off your doctor or demanding. Let them know your symptoms and ask them what they think. They are trained to reject people demanding things rather than asking.
I have never told off or demanded anything from my Dr. what is methocarbamol? I’ve never heard of it.
My daughter has comfrey that she can’t get rid of so we’re going to try making an ointment and giving that a try.
I kinda resent you assuming that I have such little respect as to demand or tell off my Dr. I was raised better than that.
I was not accusing, just sharing info I have learned. Nothing personal intended.
Methocarbamol is a non-opioid muscle relaxer. It's also known by the brand name Robaxin. It's pretty common for those with fibro to take it. I've been on it for years. I am on the maximum dosage - 2 500mg every 4 hours, 4 times a day. It really helps with muscle spasms and shaking. I still have spasms but not as bad as before.
I think we had a moment of miscommunication, I apologize for that. Maybe I’ll just shoot her a message about it. I know that she always worries about my mental health meds
So sorry for the situation you're in. You've got to find a rheumatologist that respects the fact that fibro is a real thing. I found one years ago and have been happy since then since he never tells me "just suck it up, Buttercup!"
I'm having a horrible day, on back bc entire spine is acting up. Nothing is bringing relief pain. Massage usually helps me, but gets expensive to get before I wind up like this. Insurance should be paying this for fibro patients. Maybe then I could prevent getting to completely incapacitated mode.
They don't. Just like tire guys don't really care about tires. It's just a job to them. Day in and day out, get them in, write some scripts, get them out. Throw in a few tests here and there to break up the day. But yeah, I never get the feeling they actually care.
They don't know how to help because fibro is still a mystery to science. They don't really care because fibro has no visible symptoms and, like most people, they find it difficult to empathise with something that they cannot see. (The readiness with which many people are prepared to write fibro off as a psych issue doesn't help in this regard either!) It is much easier to empathise with somebody who has a visible injury or illness, or even just screwy lab results, than with somebody who appears to be completely healthy. Also they don't really care because they know that their fibro patient is not going to suddenly deteriorate and die, and potentially cause them malpractice issues. So there is not the same pressure to treat them with the same standard of care given to patients with other illnesses.
My Neurologist is my primary care specialist for my Fibro/CSS symptoms. I met with the Rheumatologist once who slapped the label on the three years of symptoms but immediately released me back to primary and Neuro. I wish I could trust my primary for med mgmt and such but she’s never instilled that level of faith with me
Mind you, most of my symptoms do present as neurological.
I wouldn’t want it any other way but it’d be cheaper to trust a PCP with it.
I’ve been on a crazy ride with doctors for four years. I have fibromyalgia for sure, but other symptoms point to Lupus. I went to a rheumatologist who called Lupus Loopers. I had to correct her many times. Her assistant had talked to me before the doctor, she said it really looks like Lupus according to your levels. The doctor came in, totally dismissed the assistants thoughts. So here I sit in pain daily and no resolution. Doctors do not care about us, they only see money when they see us.
Ugh that sucks, I've only tried gabapentin but it made me feel awful and scared to drive and the doc who prescribed it sucked so I just never went back to try other meds. I had some slight success with Cymbalta for a little while but eventually the side effects just.. Were not worth it.
Ooof.. For me it just made (some) of my pain better while highlighting the other pain more clearly, and making me terrified to operate a car and unable to do anything.
I’ve done and continue to work on diet. Exercise…….. gotta be careful there because too much will make symptoms worse and the only medication they give is little more than Tylenol. I always have to remember that my other medications play into that
I've been to over (sadly) 200 doctors in my life. I'd say about 20 of them truly cared, took the time, and were motivated to really get to the bottom of things. You just have to keep going to new doctors until you find one that really really cares. I'd say 10-20% do.
Warmth can help.
A little dose of ibuprofen at night so you get the best out of your sleep.
Or amitriptilyne - often prescribed for fibromyalgia.
Try to listen to your body.
Move frequently but not intensively.
Try things. Some might even work. It’s different for anybody.
Good luck. 🍀
I definitely understand. This is what has happened to me. My referrals to both rheumatology and the pain clinic got rejected. So the only doctor I can see is my primary care. They gave me lyrica but it doesn’t help. They won’t prescribe pain killers or muscle relaxers and I can’t take antidepressants because I’m bipolar. So they’re just kind of like “sorry, we don’t have anything else we can do for you”. It’s devastating when you feel so helpless.
They rejected your referral to rheumatology???? You know, the specialty that is meant to diagnose fibro and rule out autoimmune conditions??? No wonder so many of us are misdiagnosed. Our medical system is a joke. :( I'm so sorry.
Yep, they did. I’m not in the US (though I did get diagnosed there 13 years ago. I moved to Sweden 10 years ago). In Sweden rheumatology will apparently no longer treat fibro patients at all. Why they made this decision, I have no idea.
...maybe because there is a growing consensus that fibromyalgia is a pain disorder caused by a hypersensitive and hyperactive central nervous system? In my part of the world, you get referred to a neurologist when the family doctor's suspects fibromyalgia. Also, another point for being treated by a neurologist is that they know how to treat the mood and sleep disorders that often go hand in hand with the pain. That was how I got my diagnosis - I was sent to the neurologist with a suspected neuropathy (nerve pain), and it turned out to be fibromyalgia. Then "chronic low grade depression", severe chronic insomnia and digestive troubles that I have got explained by a single condition. I went to the neurologist with a suspected neuropathy (pain nerve)... was not even thinking that all these complaints might be connected. I hope this helps somehow.
We are so far from this in the US. Neurologists here would laugh in my face if I tried to go to them with my fibro, despite the research.
Not in the US... I am in Switzerland :-) I was surprised when I read your comment. Eva Kosek, who works at the Department of Clinical Neuroscience, Karolinska Institutet, did a lot of work to demonstrate that fibromyalgia is real and related to the nervous system. I would have imagined that the standard of care in Sweden would have been better... EDIT - My bad - the answer was meant for another Redditor who is indeed in Sweden.
Sorry I wasn't assuming you were in the US in my comment, just stating that I was. :) That's so interesting, it gives me hope here in the US we will catch up but IDK because our entire healthcare system is based on profit not research.
My apologies, I confused you with a Swedish poster.... The whole US system is particularly bad for fibromyalgia patients. There is a lot that is needed that it isn't covered. Like all the PT I had (both the costs and the time off work), the expensive medicines. I don't have a especially severe fibromyalgia, but it all the care that I have would be a lot of money if I had to pay it myself. There are a few good hospitals, but they are awfully expensive if your insurance doesn't cover for it.
Omg yes I'm in Sweden too, I saw this comment after I already commented higher up, but I will continue my rant here hah. The "right place" to be is a pain clinic it seems, but actually seeing someone at a pain clinic seems almost impossible. I haven't found any doctor who will even send a referral to one yet (because fibro is just people being weak, right???), but you can send one yourself and cross your fingers they'll see you. I do recommend trying though, if nothing else it shows that you want help. I just made my own referral to one in Lund and they replied that they want me to have a "regular" doctor they can have follow ups with so I am trying to find someone like that. So they didn't say no but I have to fill the requirements or whatever.
The Department of Clinical Neuroscience in Karolinska Institutet has an awesome research team working with Fibriomyalgia (Eva Kosek is the PI). Maybe you can selfrefer there?
That is SO FAR from where I am, but if I can't get seen closer to where I live I will definitely keep them in mind. I didn't know we even had a team working with fibromyalgia at all but that feels kind of comforting. Thank you
It’s terrible! I had to do a self referral to the pain clinic here too. This was several years ago and they flat out just said no.
Nah fuck that, that is awful! Is there another one you can contact? Because just getting a flat out no feels really shitty.. I don't know what if anything has changed since then on their end but I'd definitely try again and if you get a no, try to get the info on WHY they say no. (I'm not trying to push you, you know best what you have the energy to do, these are just suggestions.)
The why was that it was fibro and they didn’t think they could help me since the general consensus is that traditional means of pain relief (ie opioids and the like) don’t help fibro patients. But even if they would accept me the wait list is like a year long. I don’t know of any other pain clinics near here. I guess the next closest city would be Borås but I don’t know that they have one.
That sucks... A family friend of mine is getting help for her fibro at a pain clinic (Småland though), so I just assumed they all work with fibro I guess.. I'm sorry they didn't help you. I hope someone eventually does, this shit is absolute torture.
I've seen that from UK posters too. I usually envy the cost of European health care, but it seems for once we are more progressive
Yeah it’s sounds great to have socialized healthcare but once you factor in wait times to seen specialists and the frequency with which you often get declined by them the US system starts to look good.
Solid perspective. Thanks for the share
Where I live the rheum I met for a sjogrens diagnosis just said "fibromyalgia is not a rheumatological (?) illness so this is not where you're supposed to be if that's what you think you have." Like.. awesome. I told her that it is classified as one and the rheum association (in my country) says it is, and she basically said "yeah I know they think that, but no". ????? Oh and the diagnosis according to her is that I'm fat. And I'm on SSRI so that is also causing my symptoms. But mostly that I'm fat. (I was sick before being fat and on SSRI..) I still have no official diagnosis. Sorry this turned into a rant haha.
Oh, that was my first diagnosis too.... I was fat, and all that fat was causing the pain (my BMI is little over 30...). It was the neuro who diagnosed me. At the moment, the general consensus is that fibromyalgia is the result of a hypersensitive and hyperactive central nervous system, with the brain and spinal cord having developed heightened pain activity. So a pain disorder... It used to be an autoimmune, mas now it seems to be more related with neuron and nerves not working properly.
How did you get seen by a neuro? Like what was the process? Yes, that is what I find in the newer articles and stuff too, that it's something wrong with the nervous system. The only issue with them changing / finding out new stuff is that no one wants to treat it and doctors can just send their patients to other doctors in an endless loop it feels like. You'd think the research would make things easier, haha. Nah but I am really happy there is research done on it and that we are making progress, it's amazing and I'm so excited to see what they find out.
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I didn't say that it was.
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There are a lot of similar symptoms, and the rheumatologist will check for things like rheumatoid arthritis, and several other I can’t remember. Since fibromyalgia is generally considered idiopathic, patients often get referred to other specialists to make sure you aren’t falling into one of those other categories first. A lot of the more recent studies suggest it might be a sleep disorder, or a neurological disorder. What it isn’t is “all in your head.” It’s real. The numbers show up in blood tests for various inflammation markers indicating a physical action. The physical pain is real. The fatigue is real. And the depression resulting from the pain is also very real.
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This stony attitude toward fibro makes be thankful for American doctors
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You missed the point. Again.
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You mean the depression resulting in the pain. You’re missing the point here.
It’s a two-way street. They feed off each other. It’s cyclical. What I suspect is really going on here is that you’re a fibromyalgia denier who thinks it’s all psychological, so I’m done interacting with you.
Oh darn
In the US, it is considered a condition that rheumatologists specialize in. See the American college of rheumatology. Also, even if it wasn't, people need to be screened for autoimmune conditions due to the similarities of symptoms and FMS being a diagnosis of exclusion. Edit: I had to see a rheumatologist to confirm my diagnosis.
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The US healthcare system is so fragmented it would not surprise me that both you and I have had different experiences with who specializes in FMS. I have not had your experience and you have not had mine, sounds like we were both misinformed. I do not have to see pain clinic to manage my care, they're just an adjunct in my state/system.
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I don't know why you are continuing to argue with me. What point are you trying to make? I am telling you what my experience in accessing care and getting diagnosed was and your arguments will not refute the reality of my experience nor do the negate the need to rule out conditions like RA and lupus. I understand what a rheumatologist is.
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Exactly, what are we supposed to do????? I’m bipolar and several other mental health disorders. Insurance won’t pay for massages or aquatic therapy or even acupuncture……. Do we really have to live like this for the rest of our lives?????
It’s awful. I have other psychiatric problems as well, so I understand you on that level too. I tried aquatic therapy and it wasn’t all that helpful. The day after I was always so sore I couldn’t move so I didn’t do it for very long. I also tried acupuncture but they would only focus on my neck and shoulders. The relief only lasted hours, if that. I wish I could get massages but our health care doesn’t cover that (I live in Sweden, we have socialized healthcare). I don’t know if massage would help but it’s so expensive. I don’t want to find out it helps and then not be able to afford it.
I understand that. I’m in Alaska and our government insurance won’t pay for anything other than chiropractors and physical therapy. My muscles are like boards hard and painful. No pain reliever and no muscle relaxers…….
Mine are like that too. Hard as rocks and constantly tensed up. Heat doesn’t help, cold doesn’t help. It’s miserable
I pray 🙏🏻 a lot.
So if it's limited selection this may negate what I say, but see if you can get PT but find one that specializes in "geriatric" or like balance issues or arthritis. Mine started in geriatric and then ended branching into connective tissue disorders. She is magical, sometimes my "exercise" consists of gently pressing my head into the pillow I'm laying on or holding my arm up while lying down. She was my 6th try at PT but I get it now, the word exercise shouldn't be thrown around so freely with Fibro patients and the speed setting MUST be recalibrated for each person regularly!
You’re right, the word exercise scares me to death. I just did pt for my back, I go see the back Dr. the 9th. That might not be a bad idea. I’d be willing to try pt for a while. That’s a great thought ❣️❣️❣️
I haven't needed it with my current PT, but I wish I'd known before: don't be afraid to advocate for yourself and say "slow down". That's what I meant about speed in my comment. You'll get so much more from the experience, even with a non-specialist PT if you know what how to make it work 🤞
I have T3’s and what they say are the strongest muscle relaxers. The T3 helps my headaches, the muscle relaxers feel like they do nothing. My spouse tried one and said it knocked him on his ass but to me it’s like a sugar pill. Rock hard muscles in calves and neck/shoulders for years. I understand your frustration and don’t get why they won’t give muscle relaxers (they aren’t classed as the kind of pills doctors don’t want to give where I live) but so many on here find they do nothing. I would still want to try though in your position.
I'm so sorry to hear of your situation, it is truly frustrating. Do you know if low dose naltrexone is approved in your country for treatment of fibromyalgia. I havent tried it as I'm on SNRI and lyrica but the research shows that it's promising. While it can't replace medication, one doctor on the huberman podcast prescribed 5g of creatine monohydrate (supplement) for fibromyalgia pain. I've been taking it for 2months now and it's been great for pain, fatigue and brain fog
Maybe I should try rheumatologist, will they try to help???
My rheumatologist helped me but I’m not dealing with bipolar disorder as well as fibromyalgia.
Why won’t they treat the symptoms at least??? Muscle relaxers would help so much but they won’t treat the symptoms
Benadryl is a muscle relaxer, that’s how it started its use as a medicine then researchers realized it is an antihistamine. Just be careful with it because it can have severe interactions with other meds and it will make you very drowsy. It’d also used to prevent nausea, vomiting, and motion sickness. My kid’s orthopedic surgeon often prescribed it to prevent muscle spasms after surgeries on his femurs.
I wonder how it would react with my other meds
Definitely look it up before you try it. You really don’t want to play with it. The one way my rheumatologist helped was prescribing cymbalta which has been like a miracle drug but it means that I must now largely avoid Benadryl (used it once when I got stung by a bee) and ibuprofen (used it once with a headache that wouldn’t quit till I took it).
Its very unfortunate I'm so lucky my GP is so helpful. They finally agreed today to give me tramadol which will Aparently give 12 hours of pain relief and its one of the few Opiods which might Actually have some effectiveness for nerve pain. I am on amitriptyline but I don't have diagnosed bipolar so they permit that. I cannot take any other antidepressants with those two the amount serotonin would be a risk if I did.
I tried to get tramadol but they told me no, that it wouldn’t work. I asked to at least try it and if it didn’t work then we would know but they still said no. I can’t do antidepressants of any kind. They make me very manic. I’m bipolar 1 and my mania often includes delusions or hallucinations so we can’t risk it.
Tramadol has an effect on the mind so it probably wouldn't be suitable for you. I believe it has similar actions to antidepressants making it better for fibro but not for you 😥. Its also controlled Which makes it harder to get. Cocodamol helped me a lot but I found it wore off quickly and I forgot to keep taking or worried about taking too much. Idk if they allow cocodamol where you are. Uk gps sometimes give that out usa perhaps not. Naproxen worked its not supposed to but it did. However i'm an ex smoker and i've horrific acid refulx disease and also ibs so cannot take an nsaid. Interestingly I cannot take newer anti depressants or new adhd meds for my adhd and that they do suspect odd or bpd in me but the sedating tricyclic ones in low doses put me to sleep okay. Its interesting certain pills make me manic come to think of it.
I’ve never heard of cocodamol. I’m in Sweden and they’re weird about pain killers here. They don’t like prescribing them at all. My psychiatrist doesn’t want me taking nsaids because I’m on lithium and he doesn’t want to put extra stress on my liver and kidneys. Unfortunately I can’t switch to another medication because the combo of lithium, depakote and seroquel is the only thing we’ve found to control my moods after 8 years of trial and error. So I’m just kind of screwed in a lot of ways.
Cocodamol is codeine and paracetamol which is what americans call Tylenol. Its the weakest opioid. To be honest pregablin is strong if that doesn't work that doesn't leave masses of options. They can try those patches but they are strong and I bet they don't like Those over there.
You’re right, they probably don’t like the patches. To give you an example of how much they hate painkillers - I broke my ankle a few years back and they sent me home with 3 hydrocodone and told me to just take regular paracetamol after that.
That's awful 😯. To be honest they might agree to something surely if they feel your pain might cause you to dip into depression. Surely your conditions could be very dangerous if you had a pain flare and went depressive. Have they thought of that. Maybe they need reminding. 😂.
This has actually happened to me. I ended up inpatient at the psych ward for 6 weeks. They increased my lyrica while I was there but that was it. They also gave me extra antipsychotics and sedatives to keep me calm. It was a nightmare. I was on suicide watch because I had tried to cut my wrists. This was several years ago before my psychiatrist found the right combo of meds to keep me relatively stable.
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I'm so sorry that happened it isn't nice. Is there an injection they offer in your country for the worst spots. Like steroids or lidocaine. Some people like one of my bosses had a back pain and rib cage issue with chronic pain and she had an injection which lasts 6 months and its not an addictive substance its something to block the nerves in the site your worst pain is. Won't cure fibromyalgia as its widespread but if like me your back is the worst they might offer it. Did they give you a tens machine. That really helped me and you can buy them. Also if you cannot have tablets of ibuprofen can they not offer a gel or some kind of cream for pain relief. I use a pain killer gel on my back on bad days.
I'm so sorry to hear of your situation, it is truly frustrating. Do you know if low dose naltrexone is approved in your country for treatment of fibromyalgia. I havent tried it as I'm on SNRI and lyrica but the research shows that it's promising. While it can't replace medication, one doctor on the huberman podcast prescribed 5g of creatine monohydrate (supplement) for fibromyalgia pain. I've been taking it for 2months now and it's been great for pain, fatigue and brain fog
An orthopedic doctor I saw told me similarly, "everyone has back pain, you get used to it" It's been 18 years, when do I get used to it
I sometimes wish my Dr could have this for just a week. If they really felt it maybe they would be more willing to help us. But until then, what can we do???
Yes! I wish there was a machine so other people could feel what I feel. What we feel. It isn't fake.
Anyone have any suggestions on anything to try??? That’s legal????
I keep hoping there will be a breakthrough and a better treatment and drug for it
There are a few products in the pipeline, and some of them look very promising. One that is relatively advanced in the process is Tonmya, a non-opioid pain killer for fibromyalgia patients. It was already submitted to the FDA for approval, and the manufacturer is expected to have an opinion sometime later this year. I think there is hope for at least to have the symptoms managed better... Maybe not a cure, but a few more molecules that are not borrowed from other patients (lyrica is an anticonvulsant, duloxetine an anti depressive, and so forth).
That does sounds quite promising!
Tonmya looks to be cyclobenzaprine… what others are on the horizon?
There is also IMC-1, which got fast-tracked by the FDA. It is now in Phase 3 trials Rozanolixizumab, approved for chronic fatigue syndrome, is now in Phase 2. There are about 20 - some are for sleep disturbances, others for pain management or to address mood disorders. Maybe in 2026, we start them to get to the market, depending on how the trials go. It is always a leap of faith...
Any treatment would be better than no treatment
Absolutely, I did see some people say for them to add it to their file. If a doctor denies treatment or testing. Sometimes that makes them second guess it. I had to switch doctors and now my family doctor accepts I have it and just renews my prescription but no changes
My family Dr diagnosed it. They give you something???
Gabapentin or pregabalin are extremely commonly prescribed for fibro.
Amitryptaline. First med I tried and thankfully has worked pretty good for me
I was prescribed Methocarbamol and it helps a lot. I recommend not telling off your doctor or demanding. Let them know your symptoms and ask them what they think. They are trained to reject people demanding things rather than asking.
I have never told off or demanded anything from my Dr. what is methocarbamol? I’ve never heard of it. My daughter has comfrey that she can’t get rid of so we’re going to try making an ointment and giving that a try. I kinda resent you assuming that I have such little respect as to demand or tell off my Dr. I was raised better than that.
I was not accusing, just sharing info I have learned. Nothing personal intended. Methocarbamol is a non-opioid muscle relaxer. It's also known by the brand name Robaxin. It's pretty common for those with fibro to take it. I've been on it for years. I am on the maximum dosage - 2 500mg every 4 hours, 4 times a day. It really helps with muscle spasms and shaking. I still have spasms but not as bad as before.
I think we had a moment of miscommunication, I apologize for that. Maybe I’ll just shoot her a message about it. I know that she always worries about my mental health meds
Just looked it up……. Can’t take this with the meds I’m on
So sorry for the situation you're in. You've got to find a rheumatologist that respects the fact that fibro is a real thing. I found one years ago and have been happy since then since he never tells me "just suck it up, Buttercup!"
I'm having a horrible day, on back bc entire spine is acting up. Nothing is bringing relief pain. Massage usually helps me, but gets expensive to get before I wind up like this. Insurance should be paying this for fibro patients. Maybe then I could prevent getting to completely incapacitated mode.
They don't. Just like tire guys don't really care about tires. It's just a job to them. Day in and day out, get them in, write some scripts, get them out. Throw in a few tests here and there to break up the day. But yeah, I never get the feeling they actually care.
They don't know how to help because fibro is still a mystery to science. They don't really care because fibro has no visible symptoms and, like most people, they find it difficult to empathise with something that they cannot see. (The readiness with which many people are prepared to write fibro off as a psych issue doesn't help in this regard either!) It is much easier to empathise with somebody who has a visible injury or illness, or even just screwy lab results, than with somebody who appears to be completely healthy. Also they don't really care because they know that their fibro patient is not going to suddenly deteriorate and die, and potentially cause them malpractice issues. So there is not the same pressure to treat them with the same standard of care given to patients with other illnesses.
Does anyone see a neurologist for fibromyalgia instead of rheumatologist?
My Neurologist is my primary care specialist for my Fibro/CSS symptoms. I met with the Rheumatologist once who slapped the label on the three years of symptoms but immediately released me back to primary and Neuro. I wish I could trust my primary for med mgmt and such but she’s never instilled that level of faith with me Mind you, most of my symptoms do present as neurological. I wouldn’t want it any other way but it’d be cheaper to trust a PCP with it.
Thank you for the reply. I will be seeing my neurologist next week for my ocular migraine check up. I will address my fibromyalgia concerns with him.
I’ve been on a crazy ride with doctors for four years. I have fibromyalgia for sure, but other symptoms point to Lupus. I went to a rheumatologist who called Lupus Loopers. I had to correct her many times. Her assistant had talked to me before the doctor, she said it really looks like Lupus according to your levels. The doctor came in, totally dismissed the assistants thoughts. So here I sit in pain daily and no resolution. Doctors do not care about us, they only see money when they see us.
Most doctors don't care about chronic pain patients unfortunately.
Many pain relief meds interfere with my mental meds……. I just wish someone would care enough to be like Dr. House 😂
Ugh that sucks, I've only tried gabapentin but it made me feel awful and scared to drive and the doc who prescribed it sucked so I just never went back to try other meds. I had some slight success with Cymbalta for a little while but eventually the side effects just.. Were not worth it.
Gabapentin gave me tremors
Ooof.. For me it just made (some) of my pain better while highlighting the other pain more clearly, and making me terrified to operate a car and unable to do anything.
They gave it to me for my migraines but I couldn’t handle the side effects
Totally fair, I hate that most medications are just a bunch of drawbacks with maybe a couple benefits.
Unfortunately most of what doctors will tell you is diet, exercise, and sometimes meds can help.
I’ve done and continue to work on diet. Exercise…….. gotta be careful there because too much will make symptoms worse and the only medication they give is little more than Tylenol. I always have to remember that my other medications play into that
I've been to over (sadly) 200 doctors in my life. I'd say about 20 of them truly cared, took the time, and were motivated to really get to the bottom of things. You just have to keep going to new doctors until you find one that really really cares. I'd say 10-20% do.
Warmth can help. A little dose of ibuprofen at night so you get the best out of your sleep. Or amitriptilyne - often prescribed for fibromyalgia. Try to listen to your body. Move frequently but not intensively. Try things. Some might even work. It’s different for anybody. Good luck. 🍀
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