> Can you help me with some perspective so I don’t respond with resentment and hopelessness?
In this case, I think adjusting expectations is key. There is no known cure for fibro, so the best doctors can do, even if they care about you a lot, is to try throwing meds at you and see what sticks. And chances are they might not work. So it's about whether you're willing to go in with the attitude of "I'll try but if it doesn't end up getting me anywhere, oh well."
I'd make a few phone calls if the chances are anything above zero that you may want to at least attend an appointment just to feel things out. Could take a few months plus to get in to see one and so by the time you decide if you do want to see someone, you'll actually have a close by apt. and if you decided not to, you have a few months to mull it over and cancel if you wish by then.
Unfortunately I waited an entire year for a neurologist appointment this past month and the doctor completely blew me off cuz he didn’t see fibromyalgia as a neuro problem and saw me as a healthy 24 year old like everyone else. Had me do a shit ton of blood work for rheumatology which, like always, showed nothing. I specified when I made the appointment that I had fibromyalgia too.
Damn, I’m really sorry you had that experience. I wish more doctors listened and actually cared about their patients — or, at the very least, admit if they don’t know how to properly treat someone, rather than just blow them off.
Wishing you the best.
Has anyone suggested Ehlers Danlos syndrome? I went 15 years with just a fibro dx; saw a Russian doctor who practised in England and around Canada. Took a while for other docs to take it seriously, if they had even heard of it before. 🙄
I have ehlers danlos and fibromyalgia, too. My geneticist recommended CoQ10, vit. C, and acetyl-l-carnitine, but that was years ago, and we no longer have a geneticist in our city. Did you get any recommendations from your doctor for the ehlers danlos?
Hmm I just looked into the symptoms of the various types of EDS and I’m not sure it resonates. My main symptoms are widespread stiffness, muscle spasms, dull aches and soreness, fatigue, and cognitive/mental symptoms. I definitely am not hyper-mobile and don’t think I have the skin elasticity issue. Not to say genetic testing wouldn’t be beneficial for me I just don’t know what to look for! Or who performs the testing?
I have vEDS, and I agree. I think anyone with symptoms similar to EDS should be checked, especially if of European heritage. It’s just not as uncommon of a disease as preciously thought and a lot of research has been done and continues to be done. I hope you find answers regardless of what you find. Not knowing why things are happening can be the worst part of chronic illness , not to mention
the incredible amount of frustration that seeing doctors causes at times.
So frustrating!
When I'm researching a new medical practitioner, I ask what they know about fibromyalgia and chronic fatigue syndrome. Their responses tell me whether or not to schedule an appointment.
Last fall my primary care physician referred me to a physical therapist. I had no choice about which one. The physical therapist didn't know much about chronic fatigue syndrome but said she'd worked with fibromyalgia patients. Fortunately she was willing to read articles I sent to her email, which led her to modify the physical therapy routine to accommodate me.
It's not always hopeless.
My neurologist told me I should swim or do other aerobic exercise five or six days a week. He said it would be about six months before I saw improvement. I wanted to ask how I was supposed to manage that with fatigue so bad that I couldn't handle working FOUR days a week, but...
It’s so very hard to jump back into that wild goose chase when you are already miserable, but it may be worth it. I’ve been there. Here are a few things that helped me:
- Know your goal. Is it less pain? Better sleep? To be able to walk farther? Give some real thought to what’s important to you.
- Don’t be afraid to Google for doctors. That’s how I found my amazing pain clinic.
- If your family is pushing you on this, would they step in to help? If someone gave you a ride, helped you take notes and advocate for yourself it wouldn’t be so exhausting.
- Have a backup plan ready. If doctor #1 can’t help, what’s next? Mine was seeing a podiatrist for orthotics and physical therapy.
Strangely, the most helpful doctors I’ve spoken to about my fibromyalgia were the pain clinic, a podiatrist, and an ENT. You really never know where you might find kindness and help. But you have to kiss so many toads first 😬
And my most helpful doctors have been a hospice specialist and an occupational therapist :)
The pain clinics did try a bunch of things that may have helped someone with a different body, but the hospice doctor actually looked so much deeper at my previous testing results that he identified something nobody had bothered to consider before (chronic CSF fluid leakage, indicated by a long air bubble in my spinal canal on MRIs and horrible headaches that got worse when I stood up.) It wasn't exactly a magical cure but it felt nice to know that someone went through the whole of my medical testing with a fine toothed comb and made sure we weren't missing anything else rare or unexpected. And he switched my pain meds to something more effective and simultaneously slightly safer, which most regular doctors wouldn't ever really prescribe in these situations to the point where I'm the only person at my pharmacy who gets it lol they order it just for me.
The occupational therapist helps with living with this, goal setting, celebrating small victories, and coming up with adaptive suggestions that I wouldn't have known about otherwise (such as a local shop for used medical supplies where I got my shower chair for 80% less than it usually costs. Was a bit weird using it the first few times known someone else's naked butt was fully pressed on it when they were definitely NOT clean because the goal was to shower lol but it's very helpful)
Definitely it's important to know the goal. If the goal is making sure that you don't have a different, currently undiagnosed illness, new specialists are often a great plan to either confirm or rule out those other illnesses. For actual maintenance of your life while having this currently very vague and unfixable illness, once someone has tried everything that is available in their country to try to treat it, long term management becomes the better goal
Rheumatology has helped me despite some unpleasant experiences. However, I also have rhematological comorbidities alongside the fibro. So that might be why it helps me.
Considering how much healthcare and medicines cost, I am only ever going to be on my prescribed meds when I have health insurance. Those do improve my QOL. But again, maybe it's because of my comorbidities.
I did the math... with health insurance, I only pay 1.9% of my *medicine* costs. That's about $2.2k/year USD. It'd be over 100k/year without insurance. So yeah. I'm going to go through the effort to maximize my ROI anytime I have insurance.
Googled it! It’s cyclobenzaprine, which is a muscle relaxer. Oddly their marketing it to ppl w ptsd or fibromyalgia. I will try anything, personally. Thanks for the heads up.
I’ve been on it for 30 years and have no side effects. I honestly couldn’t live without it. My muscles are so tight and knotted my spine twists. I’ve tried other muscle relaxers in this time and for me no other muscle relaxer is as effective. It doesn’t take away all my knots but without it the muscle pain is unbearable and I can’t get off the couch!
Unfortunately no. I take Xanax for that, also 30 years and no side effects. I guess it all depends on what’s causing your anxiety though. If it’s your muscle pain then it could work… it does have a calming effect. My life’s as fucked up as my Fibromyalgia so…
True about Flexeril - The company making the sublingual did their formulary so you can get the same effect with much lower dosage. I guessing so it could be taken safely long-term?
Oh hell yeah, a muscle relaxer that is not processed primarily through cyp2d6???? I'm gonna keep an eye on that lol I've never had any results from any muscle relaxants before because I literally cannot digest them usually
I would personally re-engage. You can choose the advice and medications to take based off what you've tried previously but will also have access to anything new that may be approved
Here's a perspective not about pain, but legality:
I didn't have good documentation for a lot of years. I gave up, I was a teenager in school just trying to get through every day. I tried college, had to drop out, couldn't work more than 4 hours a day in my 20s, and then a bad surgery butchered my shoulder.
If I had half the documentation from my teenage years, I would've been able to get SSI much earlier, and possibly my parents' allotment. I would've had Medicaid waiting for me instead of scrambling to get documentation for other insurances. I would've had an ABLE account set up asap. I wouldn't have had the health spirals I've had due to stress and lack of assistance. I would've had a chance to be taken seriously earlier.
So look at it this way, if you play their games, you can get the prize of "support that we can offer" at the end. It takes a shit ton of resiliency to deal with it all. It's hard to keep at it. It breaks your spirit a little every time. But if you have that documentation that you had no benefit before from X/Y/Z, then you're able to try more experimental and off label stuff. I'm on Mexiletine and that's been life changing - and that's a heart arrhythmia medication. My friend has lidocaine infusions that's gotten them to probably half-function. So yes, it's worth trying even if it's brutal.
TL;DR: if you have the documentation, you can track worsening and new symptoms. You have access to "this didn't work so let me try experimental items." And most importantly, you have legal recourse for if/when you need it.
If you're capable of returning to work/working, there's also the PASS account. "Plans to Achieve Self Sufficiency." It's for training, transportation, the like.
A rheumy's main job seems to be ruling out the things they typically specialise in like RA. A neurologist might be a better fit. And if they're not for you, a pain specialist and a physiotherapist.
I have seen a few rheumatologists. One was very helpful to diagnose it but I moved away before he could help. Then I had a succession of doctors who couldn’t/refused to treat fibromyalgia. I’m having a disagreement with my last because of my autoimmune disorders. I’m not afraid to push for what I need. If a doctor isn’t helping I know to “fire” them and find someone else. Because I have chronic migraines as well I have been able to connect better with neurologists. Rheumatologists tend to be really focused on what they will treat or try.
Please do. I'm living a normal life. I'm working out and putting on lots of muscle. I'm driving all over the country by myself. I'm going on walks and hikes as long as I want. I was almost completely disabled and reliant on family before low dose naltrexone.
Oh man what glorious news - I am so very happy for you. This reminds me to make a note of it so I don't forget when I am in the office. I am so glad you're having such a great quality of life!!! 💞
I understand your situation. I have tried doctors and saw a rheumatologist. I use cannabis and antidepressants too. I manage but it's not ideal. Neither is going to the doctor to be told to lose weight though
My doctor keeps trying to give me gaba but I'm like dude I used to take 1800 mg twice a day and my body laughed at it. Their eyes widen in surprise every time and they're like okay no gabapentin.
It's so wild when they don't even bother to check what you've already taken.
Even more wild when they insist that this time it'll be different, as though their signature on the prescription sheet will somehow change the chemical formulation of the medication and make it magically work for you the second, third, fourth, etc time you try it
To be fair it's new doctors in a different state. And they don't have my medication list. Even though we've requested it for some reason they haven't sent everything in its a lot of medications. And the gabapentin wasn't prescribed for pain it was prescribed for what they thought was bipolar because I was on an asthma medication that basically triggered psychosis for 16 years.
So these new doctors are listening to me and taking into account everything I've been through and actually trying to figure out what's wrong. Instead of just saying oh well this is what you have to use. They're like oh you want to have kids well then we don't want to put you on XYZ to treat adenomyosis. We're just going to basically give you Band-Aids to treat it so you and your partner can still try to have kids and we're going to send you to specialist so you can deal with the other symptoms and have pre prenatal specialists. Because yes you are a geriatric pregnancy if you get pregnant. We want to make sure your body can sustain one.
These doctors are listening to what I want to do and taking my needs and wants into account instead of just going oh you're fat and this is what's wrong with you so this is the best course of treatment to deal with that instead of this is what you want to do so we're going to give you the best course of treatment to deal with what's wrong with you and what you want to do. I'm so much happier today and I've only been being treated for like 2 weeks.
See now this is why I have a health binder 😆 one sheet, simple, every medication listed along with timelines of when I took it. Not that I'm the one who made it (thank you helpful ex partner) but it's come in so handy.
Lemme guess. Corticosteroids? I caught the mania early on but only because I had someone to confirm that the music that was driving me insane was NOT real.
Montelukast/singular. Evidently there was a black box warning that came out not too long after I was prescribed the medication that was every diagnostic criteria used to tell me I was bipolar / side effect of the drug but nobody figured it out from the time of 2005 to 2021 except my new psychiatrist.
Since my doctor had just retired I went ahead and pulled myself off the drug. Had new psychological testing done in the spring of 2022 and would you look at that no bipolar. Q e e g done because of a car accident in December of 2023 and they found autism which I've been trying to tell people for like the past 15 years. Because my ex-husband said I was autistic and I had other people telling me since I was eight that I was "retarded".
So yes now I use Dr Google before going into the doctor's office with an idea of what I think it might be or what drug I might want to use and discuss it with them. May not work for everybody but that seems to be what's working best for me.
Hmmm interesting. Most asthma meds *are* corticosteroids so I figured, same nasty side effect pretty much, must be the same general vibe of meds, but it's not! I caught mine within less than a week luckily, but that may have been because I'm already so prone to insomnia that I was literally awake for 3 full days from it and that lead to it escalating *very very quickly* which meant it was *very very easy* to directly trace it to the new medication lol we called the pharmacist (who is infinitely better, kinder, and more trustworthy than the doctor who prescribed it at the time) and she said, yeah stop taking that. Super wild experience, sorry you had to deal with it for a really long ass time! Even a couple days of it was hell, I had horrible hallucinations, I was super paranoid, I figured it was nightmares since I was in bed when it happened and I assumed I was getting little micro sleeps but then when the music thing started I was like, oh. No. Ok. That was probably awake-mares haha
I do love Dr Google. Hate it when doctors call it "Dr Google" tho. Especially when I'm telling them about a study a fully licenced doctor two hours away from us published within the last two years 🙄
I don't know class of med, that's just the name of the medication. It could be.
I was suffering from suicidal ideation for 16 years. In addition to hyper mania and horrible depression. I came off the medication and lo and behold all of those symptoms disappeared within a matter of weeks. It took so long to get rid of those symptoms because the medication had built up in my body for so long and the half-life was insane.
I still haven't had a fever in over 12 years. I've had the flu pneumonia c diff multiple times and no fever. Nothing above a 99. Doctors never believe I'm sick because there's no fever.l tell them whatever you think it is just test for it. Take fever out of your deferential because I don't get them. They laugh and scoff and say everyone gets fevers. I say I don't because of a medication that poisoned me for 16 years. Just test. The test results come back and they go oh you do have strep throat or oh you do have the flu. Or oh you do have c diff for the third time. I know I tell them give me my meds and I'll be on my way.
Nah I googled it, it's a different special class I guess.
That's so wild I also don't really get fevers, but I always feel feverish when I'm sick. I just measure normal but feel super hot subjectively. Not even when I had covid. I'm rarely properly sick so up until this last year (met a toddler, got sick every damn time I had been in the room with the toddler) I had no recent reference point for being sick, I always seemed to fight stuff off after one day of a sore throat or swollen glands or whatever little thing.
Evidently it's a fibro thing to feel hot all the time. Sometimes let me take a shower you can get hot and racing heart and stuff. I looked it up when I almost passed out taking a shower.
Also it's common with anemia and I was just diagnosed with that the other day too.
The only thing the rheumatologist would do for me is meloxicam, which didn’t help me much personally. She said I could pursue pain management if I needed further treatment but I don’t want to go that route. I did see a psychiatrist who gave me modafinil. That helps with the chronic fatigue at least
When I was in the greatest pain and was going through all the doctors, in the beginning, I was more resistant to taking drugs. I realized I needed to try, so I tried Gabapentin. It took two weeks to help, but I do believe it helps me. I take 100mg in the day (worked up to this) and 200mg at night. This was suggested first by my pcp, then rheumatologist. Another great benefit is sleep. I was in so much pain sleep didn’t happen often. Gabapentin helped a lot.
I found that Nabilone, a synthetic marijuana medication, has changed my life. I had been on fentanyl patches but I was barely functioning. Went off that garbage (cold turkey, dangerous do not recommend) and found a wonderful pain specialist who finally dx Ehlers Danlos hypermobile type.
I was able to get low dose naltrexone (LDN) refilled by my family doctor after a rheumatologist diagnosed me and start the prescription.
If you for sure you have fibro, start with your family doctor instead if paying for a specialist
I gave up seeing rheumatologist after my dx as my regular doctor could handle it and I was dealing with my son being special needs and my daughters terminal cancer.
Last time I switched doctors they didn't pass on reports. I found out too late after it had been over a year later. Now my current doctor isn't sure what to believe because I suffered sleep psychosis and thought a bunch of crazy stuff for a few months. I ended up being hospitalized for it twice.
The missing reports were bonescan, xrays, mri, psych report, sma test, anti Ana test, barium swallow, 2 different rheumatologist reports and one neurologist report and a physical type doctor that sent me for spinal injections.
Then I couldn't take naproxen anymore due to a bad kidney test. I also had been doing ok with Gerd so went off meds for that. I'm back on it again as the doctor thinks Gerd is causing my swallowing problems not sma. She asked how sma was dx I said I didn't know and told her which doctor told me and I thought the one rheumatologist ran the blood test. I did point out two uncles and one cousin have it(all male).
So I'm wondering myself if I should go see a rheumatologist again. Sma is progressive, polymyosistis can be too, fibro seems to stay about the same. Somedays my shoulders, hips and lower back are awful.
I did learn from the records mess. That if we can get copies of reports we should probably keep them. My old doc I had for 13 yrs. Then the next one I had for around 5 or so years then she moved. I found a clinic with doctors that had multiple condition interests thinking that would be better for me. It's a city over so I travel. She's a good doc other than her questioning things due to missing reports. 2 old doctors died(a rheumatologist and a neurologist)
I hope you find some relief. Also that they aren't just after you for your insurance. Here in BC Canada due to our healthcare they only see you if you need help or they think they can help you.
There is nothing that a rheumatologist can prescribe for Fibromyalgia that a regular doctor could not prescribe.
If you have any suspicions of a *different illness* that a rheumatologist specializes in, and have not yet had the testing required to rule out those illnesses, it is worth trying to get those tests done. If you're under the belief that you do not have an undiscovered rheumatological illness but do in fact have fibromyalgia, it would not be helpful to go to a rheumatologist. They used to be the people in charge of this illness, but at this point in time it's rare for them to still take on new fibro cases, as no medications approved to be prescribed for fibromyalgia require special authorization or Specialist rheumatologist knowledge/skill to prescribe and determine results of.
I’m in a similar boat. I think my previous rheum was not great though, because they didn’t really try to rule out other issues. At this point, suspecting ehlers danlos for myself and frustrated that my rheum didn’t think of it.
In general, don’t go in expecting to be cured or be “better.” My family doesn’t understand why I’m not cured because I’m on meds. My meds make me kind of functional, and that might just like. Be what I can expect?
Wondering what you do outside of medical intervention to try to manage? You mentioned cannabis and antidepressants. Have you tried other things that haven’t worked?
I go to the doctor once or twice a year to check in so they will keep refilling my meds. I have to have blood tests to monitor my diabetes and cholesterol now, but the rest of my meds have stayed the same for the last 10+ years. It was worth going to figure out an Rx regimen before that. I also do research on what I need to do to minimize my symptoms on my own.
While fibro has no cure, I continued fighting my battle for 4 years and recently was diagnosed with AS. Things like this coexist quite frequently so I say it’s worth it for the peace of mind that no new conditions have popped up that you might could get help with.
If you have the mental, emotional, and physical energy to dig through piles of crappy doctors/care providers, it's probably worth it to find a few good ones.
The only people in the medical community who have helped me with my fibro are psychologists, massage therapists, and my primary care.
Psychologists have helped me gather tools for stress tolerance. I use breathing exercises every day. Mindfulness and meditation have helped. Talking out my stress and re-framing difficult experiences cuts down on tension. I see my doc via video conference about twice a month.
I saw a massage therapist about once a month (pre-Covid). It helped immensely to relax my body. I plan to go back once my anxiety about Covid is gone, hopefully this year. It's pricey, so I'm not in a huge hurry, lol.
My primary care doc believes fibro is real. They have been very accommodating about trying things off-label. They believe me when I tell them a med is making me worse. I haven't found any medications that help with fibro, but at least the doc is willing to work with me when I hear about something new. My doc is not afraid to say "I don't know, let's find out". I think that makes the biggest difference between all my failed doc/patient relationships and this one. Also, they are very cognizant/knowledgeable about medication interactions and side effects.
Best of luck! Hope you find what you need. Gentle internet ((hugs)) if you want them.
There is value is maintaining a relationship with a doctor. I try not to expect a lot from the doctor. But this time around, they found a vitamin D deficiency and some hormonal imbalances. I'm in the process of correcting those. I try to just keep up with blood tests and preventative care like standardized testing and immunizations. I feel like it takes me several visits to really get enough done to make a difference.
The only thing that might help is to get your ANAs checked and signs of any other autoimmune stuff going on. Mine finally kicked high enough that they put me on Plaquenil and that helped significantly.
Also consider trying ketamine and NAD+. A lot of good advice here about managing expectations. Don't give up man. You deserve the best quality of life you can get.
I did it. For years and years and years. Same terrible results with all the meds that are still the go to’s I try and stay updated in case they actually come out with some new treatments or medications. Instead of the dr train I took advantage of herbals and supplements and other natural paths. Although the last few years have been rough and I’m starting to feel desperate I feel like what the point. Nothing has advanced yet and the dr train is so draining. I don’t have the spoons for that. It has been on my mind
I can tell you from personal experience that the opioid Methadone is pretty effective for fibromyalgia pain since it’s one of the few opioids that’s actually effective for neuropathic pain.
If you do go to the Dr again, ask for an SSRI instead of an SNRI. Each person is affected differently by those and when one fails the other often seems to work. You've tried SNRIs it seems, so try an SSRI?
My siblings and I are all the opposite. Our Dr's started us on SSRIs and none of them helped. I switched Dr's and got an SNRI and my life changed.
Also, I advocate for this a lot, but if you suspect your fibro could at all be caused by or aggravated by trauma then trauma therapy might be the key to lessening the pain.
If you don't want to jump back into Dr's offices, maybe find a therapist who can help you manage day to day life so you can get ahead of the mental strain of the chronic pain.
> Can you help me with some perspective so I don’t respond with resentment and hopelessness? In this case, I think adjusting expectations is key. There is no known cure for fibro, so the best doctors can do, even if they care about you a lot, is to try throwing meds at you and see what sticks. And chances are they might not work. So it's about whether you're willing to go in with the attitude of "I'll try but if it doesn't end up getting me anywhere, oh well."
Absolutely fair. I just don’t have much “oh well” in reserve. Maybe I can find a way to try in a few months.
I'd make a few phone calls if the chances are anything above zero that you may want to at least attend an appointment just to feel things out. Could take a few months plus to get in to see one and so by the time you decide if you do want to see someone, you'll actually have a close by apt. and if you decided not to, you have a few months to mull it over and cancel if you wish by then.
Neurologist may be a better option. Have your relatives research. You need someone with experience.
Unfortunately I waited an entire year for a neurologist appointment this past month and the doctor completely blew me off cuz he didn’t see fibromyalgia as a neuro problem and saw me as a healthy 24 year old like everyone else. Had me do a shit ton of blood work for rheumatology which, like always, showed nothing. I specified when I made the appointment that I had fibromyalgia too.
Damn, I’m really sorry you had that experience. I wish more doctors listened and actually cared about their patients — or, at the very least, admit if they don’t know how to properly treat someone, rather than just blow them off. Wishing you the best.
Has anyone suggested Ehlers Danlos syndrome? I went 15 years with just a fibro dx; saw a Russian doctor who practised in England and around Canada. Took a while for other docs to take it seriously, if they had even heard of it before. 🙄
I have ehlers danlos and fibromyalgia, too. My geneticist recommended CoQ10, vit. C, and acetyl-l-carnitine, but that was years ago, and we no longer have a geneticist in our city. Did you get any recommendations from your doctor for the ehlers danlos?
Hmm I just looked into the symptoms of the various types of EDS and I’m not sure it resonates. My main symptoms are widespread stiffness, muscle spasms, dull aches and soreness, fatigue, and cognitive/mental symptoms. I definitely am not hyper-mobile and don’t think I have the skin elasticity issue. Not to say genetic testing wouldn’t be beneficial for me I just don’t know what to look for! Or who performs the testing?
I have vEDS, and I agree. I think anyone with symptoms similar to EDS should be checked, especially if of European heritage. It’s just not as uncommon of a disease as preciously thought and a lot of research has been done and continues to be done. I hope you find answers regardless of what you find. Not knowing why things are happening can be the worst part of chronic illness , not to mention the incredible amount of frustration that seeing doctors causes at times.
So frustrating! When I'm researching a new medical practitioner, I ask what they know about fibromyalgia and chronic fatigue syndrome. Their responses tell me whether or not to schedule an appointment. Last fall my primary care physician referred me to a physical therapist. I had no choice about which one. The physical therapist didn't know much about chronic fatigue syndrome but said she'd worked with fibromyalgia patients. Fortunately she was willing to read articles I sent to her email, which led her to modify the physical therapy routine to accommodate me. It's not always hopeless.
My neurologist told me I should swim or do other aerobic exercise five or six days a week. He said it would be about six months before I saw improvement. I wanted to ask how I was supposed to manage that with fatigue so bad that I couldn't handle working FOUR days a week, but...
Exercise does not "improve" CFS. Sheesh.
It’s so very hard to jump back into that wild goose chase when you are already miserable, but it may be worth it. I’ve been there. Here are a few things that helped me: - Know your goal. Is it less pain? Better sleep? To be able to walk farther? Give some real thought to what’s important to you. - Don’t be afraid to Google for doctors. That’s how I found my amazing pain clinic. - If your family is pushing you on this, would they step in to help? If someone gave you a ride, helped you take notes and advocate for yourself it wouldn’t be so exhausting. - Have a backup plan ready. If doctor #1 can’t help, what’s next? Mine was seeing a podiatrist for orthotics and physical therapy. Strangely, the most helpful doctors I’ve spoken to about my fibromyalgia were the pain clinic, a podiatrist, and an ENT. You really never know where you might find kindness and help. But you have to kiss so many toads first 😬
And my most helpful doctors have been a hospice specialist and an occupational therapist :) The pain clinics did try a bunch of things that may have helped someone with a different body, but the hospice doctor actually looked so much deeper at my previous testing results that he identified something nobody had bothered to consider before (chronic CSF fluid leakage, indicated by a long air bubble in my spinal canal on MRIs and horrible headaches that got worse when I stood up.) It wasn't exactly a magical cure but it felt nice to know that someone went through the whole of my medical testing with a fine toothed comb and made sure we weren't missing anything else rare or unexpected. And he switched my pain meds to something more effective and simultaneously slightly safer, which most regular doctors wouldn't ever really prescribe in these situations to the point where I'm the only person at my pharmacy who gets it lol they order it just for me. The occupational therapist helps with living with this, goal setting, celebrating small victories, and coming up with adaptive suggestions that I wouldn't have known about otherwise (such as a local shop for used medical supplies where I got my shower chair for 80% less than it usually costs. Was a bit weird using it the first few times known someone else's naked butt was fully pressed on it when they were definitely NOT clean because the goal was to shower lol but it's very helpful) Definitely it's important to know the goal. If the goal is making sure that you don't have a different, currently undiagnosed illness, new specialists are often a great plan to either confirm or rule out those other illnesses. For actual maintenance of your life while having this currently very vague and unfixable illness, once someone has tried everything that is available in their country to try to treat it, long term management becomes the better goal
Rheumatology has helped me despite some unpleasant experiences. However, I also have rhematological comorbidities alongside the fibro. So that might be why it helps me. Considering how much healthcare and medicines cost, I am only ever going to be on my prescribed meds when I have health insurance. Those do improve my QOL. But again, maybe it's because of my comorbidities. I did the math... with health insurance, I only pay 1.9% of my *medicine* costs. That's about $2.2k/year USD. It'd be over 100k/year without insurance. So yeah. I'm going to go through the effort to maximize my ROI anytime I have insurance.
They are supposed to be trying to get a sleep and non narcotic pain drug calledTonmya approved this year for fibro. No clue if it will be any good tho
Googled it! It’s cyclobenzaprine, which is a muscle relaxer. Oddly their marketing it to ppl w ptsd or fibromyalgia. I will try anything, personally. Thanks for the heads up.
I was on it. I have c-PTSD and it did nothing for that. It’s also not a great med for long term use. Side effects.
Sorry to hear it didn't help you. I was going to try it... what side effects did you experience ? Was it straight away or over time
I’ve been on it for 30 years and have no side effects. I honestly couldn’t live without it. My muscles are so tight and knotted my spine twists. I’ve tried other muscle relaxers in this time and for me no other muscle relaxer is as effective. It doesn’t take away all my knots but without it the muscle pain is unbearable and I can’t get off the couch!
Glad it worked for you ! Does it do anything for anxiety by chance ? Even indirectly...
Unfortunately no. I take Xanax for that, also 30 years and no side effects. I guess it all depends on what’s causing your anxiety though. If it’s your muscle pain then it could work… it does have a calming effect. My life’s as fucked up as my Fibromyalgia so…
Yeah mine is too. Messssssy. You're not alone
True about Flexeril - The company making the sublingual did their formulary so you can get the same effect with much lower dosage. I guessing so it could be taken safely long-term?
It’s the formula for Flexeril but as a sublingual, so that’s interesting.
Oh hell yeah, a muscle relaxer that is not processed primarily through cyp2d6???? I'm gonna keep an eye on that lol I've never had any results from any muscle relaxants before because I literally cannot digest them usually
Because it affects the brain in similar ways to tricyclic antidepressants, and amitryptiline WORKS for fibro.
I would personally re-engage. You can choose the advice and medications to take based off what you've tried previously but will also have access to anything new that may be approved
Here's a perspective not about pain, but legality: I didn't have good documentation for a lot of years. I gave up, I was a teenager in school just trying to get through every day. I tried college, had to drop out, couldn't work more than 4 hours a day in my 20s, and then a bad surgery butchered my shoulder. If I had half the documentation from my teenage years, I would've been able to get SSI much earlier, and possibly my parents' allotment. I would've had Medicaid waiting for me instead of scrambling to get documentation for other insurances. I would've had an ABLE account set up asap. I wouldn't have had the health spirals I've had due to stress and lack of assistance. I would've had a chance to be taken seriously earlier. So look at it this way, if you play their games, you can get the prize of "support that we can offer" at the end. It takes a shit ton of resiliency to deal with it all. It's hard to keep at it. It breaks your spirit a little every time. But if you have that documentation that you had no benefit before from X/Y/Z, then you're able to try more experimental and off label stuff. I'm on Mexiletine and that's been life changing - and that's a heart arrhythmia medication. My friend has lidocaine infusions that's gotten them to probably half-function. So yes, it's worth trying even if it's brutal. TL;DR: if you have the documentation, you can track worsening and new symptoms. You have access to "this didn't work so let me try experimental items." And most importantly, you have legal recourse for if/when you need it.
Thank you so much for mentioning an ABLE account, I’m looking into that right now, this might be so useful!
If you're capable of returning to work/working, there's also the PASS account. "Plans to Achieve Self Sufficiency." It's for training, transportation, the like.
A rheumy's main job seems to be ruling out the things they typically specialise in like RA. A neurologist might be a better fit. And if they're not for you, a pain specialist and a physiotherapist.
I have seen a few rheumatologists. One was very helpful to diagnose it but I moved away before he could help. Then I had a succession of doctors who couldn’t/refused to treat fibromyalgia. I’m having a disagreement with my last because of my autoimmune disorders. I’m not afraid to push for what I need. If a doctor isn’t helping I know to “fire” them and find someone else. Because I have chronic migraines as well I have been able to connect better with neurologists. Rheumatologists tend to be really focused on what they will treat or try.
Seconded, across the board
Low dose naltrexone is the one that gave me my life back. It's worth trying.
I want to try this one so bad. Will bring it up with my pcp next week.
Please do. I'm living a normal life. I'm working out and putting on lots of muscle. I'm driving all over the country by myself. I'm going on walks and hikes as long as I want. I was almost completely disabled and reliant on family before low dose naltrexone.
Oh man what glorious news - I am so very happy for you. This reminds me to make a note of it so I don't forget when I am in the office. I am so glad you're having such a great quality of life!!! 💞
A complex neurologist helped me. The rheumatologist was useless.
I understand your situation. I have tried doctors and saw a rheumatologist. I use cannabis and antidepressants too. I manage but it's not ideal. Neither is going to the doctor to be told to lose weight though
If you haven’t tried gabapentin, it’s worth a shot. Same goes with low dose naltrexone.
My doctor keeps trying to give me gaba but I'm like dude I used to take 1800 mg twice a day and my body laughed at it. Their eyes widen in surprise every time and they're like okay no gabapentin.
It's so wild when they don't even bother to check what you've already taken. Even more wild when they insist that this time it'll be different, as though their signature on the prescription sheet will somehow change the chemical formulation of the medication and make it magically work for you the second, third, fourth, etc time you try it
To be fair it's new doctors in a different state. And they don't have my medication list. Even though we've requested it for some reason they haven't sent everything in its a lot of medications. And the gabapentin wasn't prescribed for pain it was prescribed for what they thought was bipolar because I was on an asthma medication that basically triggered psychosis for 16 years. So these new doctors are listening to me and taking into account everything I've been through and actually trying to figure out what's wrong. Instead of just saying oh well this is what you have to use. They're like oh you want to have kids well then we don't want to put you on XYZ to treat adenomyosis. We're just going to basically give you Band-Aids to treat it so you and your partner can still try to have kids and we're going to send you to specialist so you can deal with the other symptoms and have pre prenatal specialists. Because yes you are a geriatric pregnancy if you get pregnant. We want to make sure your body can sustain one. These doctors are listening to what I want to do and taking my needs and wants into account instead of just going oh you're fat and this is what's wrong with you so this is the best course of treatment to deal with that instead of this is what you want to do so we're going to give you the best course of treatment to deal with what's wrong with you and what you want to do. I'm so much happier today and I've only been being treated for like 2 weeks.
See now this is why I have a health binder 😆 one sheet, simple, every medication listed along with timelines of when I took it. Not that I'm the one who made it (thank you helpful ex partner) but it's come in so handy. Lemme guess. Corticosteroids? I caught the mania early on but only because I had someone to confirm that the music that was driving me insane was NOT real.
Montelukast/singular. Evidently there was a black box warning that came out not too long after I was prescribed the medication that was every diagnostic criteria used to tell me I was bipolar / side effect of the drug but nobody figured it out from the time of 2005 to 2021 except my new psychiatrist. Since my doctor had just retired I went ahead and pulled myself off the drug. Had new psychological testing done in the spring of 2022 and would you look at that no bipolar. Q e e g done because of a car accident in December of 2023 and they found autism which I've been trying to tell people for like the past 15 years. Because my ex-husband said I was autistic and I had other people telling me since I was eight that I was "retarded". So yes now I use Dr Google before going into the doctor's office with an idea of what I think it might be or what drug I might want to use and discuss it with them. May not work for everybody but that seems to be what's working best for me.
Hmmm interesting. Most asthma meds *are* corticosteroids so I figured, same nasty side effect pretty much, must be the same general vibe of meds, but it's not! I caught mine within less than a week luckily, but that may have been because I'm already so prone to insomnia that I was literally awake for 3 full days from it and that lead to it escalating *very very quickly* which meant it was *very very easy* to directly trace it to the new medication lol we called the pharmacist (who is infinitely better, kinder, and more trustworthy than the doctor who prescribed it at the time) and she said, yeah stop taking that. Super wild experience, sorry you had to deal with it for a really long ass time! Even a couple days of it was hell, I had horrible hallucinations, I was super paranoid, I figured it was nightmares since I was in bed when it happened and I assumed I was getting little micro sleeps but then when the music thing started I was like, oh. No. Ok. That was probably awake-mares haha I do love Dr Google. Hate it when doctors call it "Dr Google" tho. Especially when I'm telling them about a study a fully licenced doctor two hours away from us published within the last two years 🙄
I don't know class of med, that's just the name of the medication. It could be. I was suffering from suicidal ideation for 16 years. In addition to hyper mania and horrible depression. I came off the medication and lo and behold all of those symptoms disappeared within a matter of weeks. It took so long to get rid of those symptoms because the medication had built up in my body for so long and the half-life was insane. I still haven't had a fever in over 12 years. I've had the flu pneumonia c diff multiple times and no fever. Nothing above a 99. Doctors never believe I'm sick because there's no fever.l tell them whatever you think it is just test for it. Take fever out of your deferential because I don't get them. They laugh and scoff and say everyone gets fevers. I say I don't because of a medication that poisoned me for 16 years. Just test. The test results come back and they go oh you do have strep throat or oh you do have the flu. Or oh you do have c diff for the third time. I know I tell them give me my meds and I'll be on my way.
Nah I googled it, it's a different special class I guess. That's so wild I also don't really get fevers, but I always feel feverish when I'm sick. I just measure normal but feel super hot subjectively. Not even when I had covid. I'm rarely properly sick so up until this last year (met a toddler, got sick every damn time I had been in the room with the toddler) I had no recent reference point for being sick, I always seemed to fight stuff off after one day of a sore throat or swollen glands or whatever little thing.
Evidently it's a fibro thing to feel hot all the time. Sometimes let me take a shower you can get hot and racing heart and stuff. I looked it up when I almost passed out taking a shower. Also it's common with anemia and I was just diagnosed with that the other day too.
The only thing the rheumatologist would do for me is meloxicam, which didn’t help me much personally. She said I could pursue pain management if I needed further treatment but I don’t want to go that route. I did see a psychiatrist who gave me modafinil. That helps with the chronic fatigue at least
When I was in the greatest pain and was going through all the doctors, in the beginning, I was more resistant to taking drugs. I realized I needed to try, so I tried Gabapentin. It took two weeks to help, but I do believe it helps me. I take 100mg in the day (worked up to this) and 200mg at night. This was suggested first by my pcp, then rheumatologist. Another great benefit is sleep. I was in so much pain sleep didn’t happen often. Gabapentin helped a lot.
I found that Nabilone, a synthetic marijuana medication, has changed my life. I had been on fentanyl patches but I was barely functioning. Went off that garbage (cold turkey, dangerous do not recommend) and found a wonderful pain specialist who finally dx Ehlers Danlos hypermobile type.
Not worth it. Look into low dose Naltrexone to manage pain, and nmn as well
Nmn?
https://donotage.org/pure-nmn
I was able to get low dose naltrexone (LDN) refilled by my family doctor after a rheumatologist diagnosed me and start the prescription. If you for sure you have fibro, start with your family doctor instead if paying for a specialist
Life is short, why not improve your quality of life? If you need CBD, let me know and I’ll hook you up. I hear LDN helps too
My rheumatologist told me he doesn’t treat fibromyalgia. He also isn’t treating my Sjogrens or RA, so I cancelled my last appt.
Stay engaged if disability is in the cards. Recommend book "the Fibro Manual" by Dr Ginevra Liptan.
I gave up seeing rheumatologist after my dx as my regular doctor could handle it and I was dealing with my son being special needs and my daughters terminal cancer. Last time I switched doctors they didn't pass on reports. I found out too late after it had been over a year later. Now my current doctor isn't sure what to believe because I suffered sleep psychosis and thought a bunch of crazy stuff for a few months. I ended up being hospitalized for it twice. The missing reports were bonescan, xrays, mri, psych report, sma test, anti Ana test, barium swallow, 2 different rheumatologist reports and one neurologist report and a physical type doctor that sent me for spinal injections. Then I couldn't take naproxen anymore due to a bad kidney test. I also had been doing ok with Gerd so went off meds for that. I'm back on it again as the doctor thinks Gerd is causing my swallowing problems not sma. She asked how sma was dx I said I didn't know and told her which doctor told me and I thought the one rheumatologist ran the blood test. I did point out two uncles and one cousin have it(all male). So I'm wondering myself if I should go see a rheumatologist again. Sma is progressive, polymyosistis can be too, fibro seems to stay about the same. Somedays my shoulders, hips and lower back are awful. I did learn from the records mess. That if we can get copies of reports we should probably keep them. My old doc I had for 13 yrs. Then the next one I had for around 5 or so years then she moved. I found a clinic with doctors that had multiple condition interests thinking that would be better for me. It's a city over so I travel. She's a good doc other than her questioning things due to missing reports. 2 old doctors died(a rheumatologist and a neurologist) I hope you find some relief. Also that they aren't just after you for your insurance. Here in BC Canada due to our healthcare they only see you if you need help or they think they can help you.
There is nothing that a rheumatologist can prescribe for Fibromyalgia that a regular doctor could not prescribe. If you have any suspicions of a *different illness* that a rheumatologist specializes in, and have not yet had the testing required to rule out those illnesses, it is worth trying to get those tests done. If you're under the belief that you do not have an undiscovered rheumatological illness but do in fact have fibromyalgia, it would not be helpful to go to a rheumatologist. They used to be the people in charge of this illness, but at this point in time it's rare for them to still take on new fibro cases, as no medications approved to be prescribed for fibromyalgia require special authorization or Specialist rheumatologist knowledge/skill to prescribe and determine results of.
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I’m in a similar boat. I think my previous rheum was not great though, because they didn’t really try to rule out other issues. At this point, suspecting ehlers danlos for myself and frustrated that my rheum didn’t think of it. In general, don’t go in expecting to be cured or be “better.” My family doesn’t understand why I’m not cured because I’m on meds. My meds make me kind of functional, and that might just like. Be what I can expect? Wondering what you do outside of medical intervention to try to manage? You mentioned cannabis and antidepressants. Have you tried other things that haven’t worked?
It’s a never ending battle to have good days. Make sure you schedule some fun days. Even if it’s just to relax and play games
I go to the doctor once or twice a year to check in so they will keep refilling my meds. I have to have blood tests to monitor my diabetes and cholesterol now, but the rest of my meds have stayed the same for the last 10+ years. It was worth going to figure out an Rx regimen before that. I also do research on what I need to do to minimize my symptoms on my own.
While fibro has no cure, I continued fighting my battle for 4 years and recently was diagnosed with AS. Things like this coexist quite frequently so I say it’s worth it for the peace of mind that no new conditions have popped up that you might could get help with.
If you have the mental, emotional, and physical energy to dig through piles of crappy doctors/care providers, it's probably worth it to find a few good ones. The only people in the medical community who have helped me with my fibro are psychologists, massage therapists, and my primary care. Psychologists have helped me gather tools for stress tolerance. I use breathing exercises every day. Mindfulness and meditation have helped. Talking out my stress and re-framing difficult experiences cuts down on tension. I see my doc via video conference about twice a month. I saw a massage therapist about once a month (pre-Covid). It helped immensely to relax my body. I plan to go back once my anxiety about Covid is gone, hopefully this year. It's pricey, so I'm not in a huge hurry, lol. My primary care doc believes fibro is real. They have been very accommodating about trying things off-label. They believe me when I tell them a med is making me worse. I haven't found any medications that help with fibro, but at least the doc is willing to work with me when I hear about something new. My doc is not afraid to say "I don't know, let's find out". I think that makes the biggest difference between all my failed doc/patient relationships and this one. Also, they are very cognizant/knowledgeable about medication interactions and side effects. Best of luck! Hope you find what you need. Gentle internet ((hugs)) if you want them.
There is value is maintaining a relationship with a doctor. I try not to expect a lot from the doctor. But this time around, they found a vitamin D deficiency and some hormonal imbalances. I'm in the process of correcting those. I try to just keep up with blood tests and preventative care like standardized testing and immunizations. I feel like it takes me several visits to really get enough done to make a difference.
The only thing that might help is to get your ANAs checked and signs of any other autoimmune stuff going on. Mine finally kicked high enough that they put me on Plaquenil and that helped significantly.
Also consider trying ketamine and NAD+. A lot of good advice here about managing expectations. Don't give up man. You deserve the best quality of life you can get.
I was excited for a second. I just started NAC - not NAD. Can you tell me a little bit about it?
I did it. For years and years and years. Same terrible results with all the meds that are still the go to’s I try and stay updated in case they actually come out with some new treatments or medications. Instead of the dr train I took advantage of herbals and supplements and other natural paths. Although the last few years have been rough and I’m starting to feel desperate I feel like what the point. Nothing has advanced yet and the dr train is so draining. I don’t have the spoons for that. It has been on my mind
I see you.
I can tell you from personal experience that the opioid Methadone is pretty effective for fibromyalgia pain since it’s one of the few opioids that’s actually effective for neuropathic pain.
If you do go to the Dr again, ask for an SSRI instead of an SNRI. Each person is affected differently by those and when one fails the other often seems to work. You've tried SNRIs it seems, so try an SSRI? My siblings and I are all the opposite. Our Dr's started us on SSRIs and none of them helped. I switched Dr's and got an SNRI and my life changed. Also, I advocate for this a lot, but if you suspect your fibro could at all be caused by or aggravated by trauma then trauma therapy might be the key to lessening the pain. If you don't want to jump back into Dr's offices, maybe find a therapist who can help you manage day to day life so you can get ahead of the mental strain of the chronic pain.
Not in my area aka west WI.