I'm sorry you're experiencing that. Lots of patients just fall through the cracks like this. In most cases you'll want a doctor in the same state as you, I believe. Prescribing and treating across state lines can get tricky.
If you want LDN, hop on over to agelessrx and get a prescription through them. They operate in any US state. It costs 35 bucks a month. It's a completely digital process. You just fill out a couple forms and then a doctor prescribes you the LDN and it gets shipped to you. Some people also legally import naltrexone from a foreign pharmacy. That option is cheaper (about 5 bucks a month) but more involved, and requires paying for a lot of meds all at once. I mean, it sucks that it isn't covered by insurance, but at least it's fairly accessible.
I'd probably also recommend doing some self-research into dysautonomia if you haven't already. The most common dx is POTS. Dizziness, if it presents in a specific way, and heat intolerance point towards dysautonomia. Lots of people with fibro do have it comorbid. You need a cardiologist or neurologist to treat that, ideally one that has been recommended by the online dysautonomia community. In my experience, facebook groups seem to have the best doctor recommendation lists.
It might also be worthwhile to look into me/cfs, which is one possible explanation for extreme fatigue, and again, sometimes comorbid with fibro. There's quite a strong patient community for me/cfs, with lots of work put into creating doctor referral lists.
This has been my experience as well. Rheumatologists act like I'm wasting their time once my labs come back normal. Pain management doc seems to understand I just want to regain prior functioning in my hands and have it conclusively ruled out that there is nothing mechanically wrong with them. (Almost all my pain is in my fingers, in very specific locations). Unfortunately I picked a Dr who mostly treats spinal stuff, but at least she referred me to a colleague whose focus is small joints and OT instead of treating me like a hypochondriac.
I am done with rheumatologists, they all act like they don’t want to deal with Fibro..one even said that the doctor will not treat you if you mention Fibro..I feel like these are the doctors they throw us to but none of them want to deal with it..just do tests to rule out others..then say well it’s fibro 🤷🏻♀️just have to deal with it..here are some pills that will make you feel like complete crap..mess your brain up even more..give you horrible side effects..yes even a ton of weight gain even though I just finished saying you need to lose weight 🤷🏻♀️..good luck! Out of everything I have tried Tramadol is the only thing that helps me get through my day with no side effects and feel as normal as possible..I went to a pain doctor and told him I am done with all of these other meds I feel best on tramadol he said no problem and finally not having to feel like a drug addict to be able to get some help with my pain. If they really want to know Tramadol actually has shown to improve pain in people with Fibro they tested it in rats..so sometimes the opioid does work for Fibro.
I have both Fibro and CFS/ME. Im pretty sure Lupas too but no one wants to add that officially despite the evidence. Tramadol is the only thing that stands between me and permanent bed rest. It's not been addictive in my case either. I used to take oxycontin years ago and the dependency I developed to that was a whole world away from Tramadol. Buprenorphine has been helpful too. I have a weekly patch as well as Tramadol. There's definitely a small dependency to the patch, yet I didn't experience that when taking subutex (the oral version of Buprenorphine). If I could only have one, I'd stick to Tramadol.
Cymbalta is often the first one they will try. I got really good relief from Cymbalta but they removed
Me from it to put me on Wellbutrin for smoking cessation which that did not help me I just had to decide to quit lol but when I asked to go back on Cymbalta I got zero relief… so it is hit and miss. I have arthritis and liver disease so literally there is not a lot my Rheum can give me but I did ask for Flexeril which she was happy to give me… I think it very much depends on the doctor, yours sounds as if he has been burned for prescribing opioids in the past.
Thank you. I really wish they'd find a reason. Every doctor used to tell me how young I was and shouldn't be going through this… so there is something sus, but Noone will look into it too much because of all the testing I had when I first started clotting.
I’m so sorry you’re experiencing this. I had to go through a few such doctors myself. I actually found my current doc in a neurologist who has a lot of fibromyalgia patients that are under their care. I’ve been on Gabapentin, cymbalta (Lyrica), and Duloxetine before. None of them worked for me (got only bad side effects instead). I only recently learned that while they’re the first things docs often use for fibro patients, they’re all calcium channel blockers. So if you’re like me and experiencing the same side effects with each, or if they simply don’t work for you, you 100% have every right to tell them to do their own research and look into these yourself. You can tell them that using medications that all use the same method of action and have all failed you literally indicate that they’re not compatible with your body and that you need help through a different medication asap. Try also asking for access to tens units and a good PT recommendation.
Maybe even look for neurologists or pain management specialists who are specifically women. I’m a person of color so I looked for a woman of color, or those similar to my ethnicities so that I can reduce the chances of being dismissed or seen as drug-seeking. It made all the difference in the world to talk to a better doc. Coz my current one actually understands and takes my word and my symptoms (quite visible) seriously, unlike the male docs who have all completely just either abandoned me, yelled at me, or verbally or physically harassed me. It’s the doc, it’s not you. And you deserve good healthcare, period.
I had a similar experience with my health over the past few years! Very frustrating and i understand the pain thatll put you through!
My first question ofc is: have you tried any of the meds your doctors have recommended yet? I tried lyrica and a mere 50mg multiple times a day has helped. But ofc it doesnt work for everyone! Just sounded like maybe you had some anxiety about just going down the list and giving stuff a shot!
My second question is: and everyone has their own answer, but do you value moreso knowing the cause, or finding treatment? For me at first, i wanted to know the cause. It was a long road of, like u mentioned, very inconclusive testing, few to no answers, and stress being added to my already debilitating symptoms. I def recommend testing for the more serious causes, but once those are out of the way, you may find peace in focussing more on the symptoms themselves.
Third (just a comment): my dr also thought i was seeking painkillers. I was hesitent to try the "milder" meds cuz i was worried they wouldnt help. Ive had this issue with a lot of meds i take. But, after some trial and error, i actually have found meds for my various issues that arent too strong, but go a long way :)
Im sorry to hear what you're going through, i know how scary and generally upsetting it is. Goodluck!
You need new doctors. If your primary care doctor isn't the problem, go back to that doctor. Can your primary care doctor manage your fibromyalgia? I'm also in California and have Kaiser. It's a difficult HMO to have with complicated medical issues like ours. Since I was diagnosed with fibromyalgia in December 2023, I've had a very hard time. Every medication I've tried has failed because the side effects were so severe I had to stop. When I mentioned pain medications (to be taken only as needed), he tried to send me to pain management. I do not want my health to be solely managed by PM. I have been with my doctor for 9 years.
I had an appointment with my doctor today. It was such a pivotal appointment. I did a bunch of research, learned about the physical symptoms I'm having, and was able to have a very productive conversation. I felt that because I was knowledgeable about the medical symptoms I was experiencing, I was better able to help my doctor. Collaboratively, we decided on some medications and medication changes.
It's quite ignorant for a doctor to tell you those are the only medications he uses. It shows his lack of knowledge about this condition. Not to mention his unwillingness to study and learn so that he is a resource for patients.
Depending on your insurance, you should be able to see other doctors if they're within your insurance network. There are doctors who understand fibromyalgia and prescribe medications to manage it, and other symptoms/conditions that often occur as well.
Have you considered seeing a concierge doctor or direct provider care doctor? They don't accept insurance. You pay a monthly fee to see them. There's less waiting for appointments, no red tape, and longer appointment times given. Regular insurance will cover prescription copays. And some testing may be covered. There should be lots of options for direct care down where you are. I live in a small mountain town in Northern California. There's a direct provider care doctor less than 30 miles from me.
I get plenty of muscle relaxers they are t helpful for me cymbalta has absolutely helped me. Soma and Flexeril are always a day late a dollar short and they take all strength away for streets ahead.
Fibromyalgia is a syndrome, so it's still used as a catch-all for unexplained pain, weakness, and fatigue. Find another rheumatologist who treats symptoms while strengthening your physical and mental resilience... something you will not do on Gabapentin, Lyrica, Cymbalta, and all the rest.
Also, Fibromyalgia is typically comorbid with ADHD, so an evaluation is beneficial, too. Some CNS stimulants really improve Fibromyalgia symptoms.
I'm in kern county, currently on medicaid (ty covid disaster benefits) and take gabapentin, meloxicam, cyclobenzaprine (as needed before bed), plus I have lidocaine patches.
I see a neurologist, PT and pain management doctor for cervical spine and lumbar issues and widespread chronic nerve pain. I have a lot of overlapping symptoms with fibro but my doctor will not give me a diagnosis.
There isn't one cure all that works for everyone. Some things work for some and not others because of the type of pain they're having. When I was diagnosed a few months ago I found out that muscle relaxers and trigger point injections didn't work for me because it was nerve pain I was experiencing the most, not muscle pain. I started pregablin and eventually I was up to 100 MG 2x a day. I was experiencing less pain but it was still pretty bad some days. I was still consistently had really bad pain in my sacrum and hips and ended up looking into nerve blocking facet injections. I have an appointment on the 5th to be evaluated. I've found supplements, trying to cut a lot of sugar, carbs, and a lot of alcohol out of my diet (they cause inflammation which worsens symptoms), moving more and stretching a lot even if it is really hard to when I'm in pain, and making sure I drink a lot of water all help me. I hope that helps. I hope you find some relief.
I'd believe in getting a new rheumatologist. Amitripyline is better than cymbalta according to multiple studies so why he doesn't believe in it heaven knows. If your specialist is shit time to get rid of them.
All my rheumatologist does is tell me to not have any sugar or carbs at all…even nothing healthy like a sweet potato. What a joke. I’m not going back. I’ll just have my family doctor manage my care.
Exactly..I stopped going..it was ..well we did all tests and tried different things and it seems it’s “just Fibro” not much else to do..such a waste..then if I go back to my regular doctor ..he says you’re rheumatologist is supposed to be helping you..your bloodwork came back with very high sed rate..etc..etc..I know doc but I am going to pay another visit for him to just say..sorry it’s just Fibro can’t really do anything..then my regular doctor is frustrated…I say ..yeah imagine how I feel doc 😫
A rheomotologist once told me that there is no drug for now that cures fibro. Everything out there is experimental and most will cause long term side effects.. I was on gabapentin for a while and it caused brain fogs. That’s when I decided to stop taking it. Have you tried taking vitamin d, magnesium citrate, b-12, omega 3? They really helped me to get back my energy
Charge doctor asap. Clearly he has no concept of putting the patient front and centre. Once met a Dr like this. I hasn’t even sat down when he said ‘The first thing we need to do is get you off these pain killers!’
Having suffered with fibro for 13yrs and given his surgery reams and reams of documents from multiple experts in the field, even recommendations from the pain specialists, he decided addressing HIS objective of removing opiates was paramount to my problem. I left the Surgery and later found out that the internet was rife with criticism of their service.
Put yourself from and Centre and find a different Dr. that understands this condition.
Gabapentin does treat many symptoms, initially seizures of course, but nerve pain, joint pain, insomnia, generalized pain And anxiety/panic attacks. Love the stuff. You can take quite a bit with few side effects. I’m on 600 mg in am and 900 or 1200 mg at night.
Yeah, have had several autoimmune disorders for 25 years. There is no one stop shop for pain relief. It’s up to me though to fight for help with my disease. Took 6 years of specialists.
Now am on gabapentin, a lot of it, SSRI’s, immunosuppressant (this was the turnaround pill for me), anxiolytics, opioid pain patch, a long acting Tramadol for really bad days, supplements up the yin yang and sleep. Sleep more sleep. Always feeling like you have the flu. And more sleep. Joints also disintegrating and no amount of pills will completely block that pain.
Even now, fully accepting my disabilities seems so..not me!
Can’t remember if you mentioned it but a good clinical psychologist (the PhD type 😉) for pain management with CBT is great for yourself and gives friends and family some relief too.
Keep up the good fight
Cymbalta made me super sweaty I’m now on Venlafaxine but idk how much it’s helping my pain. I’ve dropped my Lyrica by 300mg a day with my GP but I don’t know if I should do something else because I honestly can’t afford stuff that isn’t covered by government insurance so I’m just trucking along on a lil bit of lyrica. The colder weather has been a struggle and I’m truly hoping [location] gets its shit together with the cannabis prohibition so I have more options without having to be stranded at home or relying on the generosity of people for rides.
edit: realising I shouldn’t just dump heaps about myself publicly online
In my opinion, this is happening because you are seeing a rheumatologist for a neurological problem. They initially got involved in treating Fibromyalgia because it was so common in people who had rheumatoid diseases. Just because it can be secondary to rheumatoid diseases does not mean it involves the same systems. Rheumatologists do not have expertise in the systems involved in fibromyalgia. They stick to FDA approved treatments because they don’t keep up with Fibromyalgia research.
It’s time for you to find a new practice and new doctor. Find somebody who has expertise in fibromyalgia, not rheumatoid diseases.
LDN and medical cannabis for me have been a 10000000 times better than those meds. I chucked all my meds in the bin since.
Whilst i still struggle and have awful flares, its nothing like the past. I told my medical cannabis pain consultant that its given me back aspects of my old life, im working more than in years.
Give that doc the sack, and if possible try LDN and/or medical cannabis
I live in Southern California. I am treated at Southland Arthritis. I have a blood panel run that includes ANA and often CRP and SED rate. These are all inflammatory markers. The last test just had ANA run and it was high positive so it automatically adds in a three set reflex to test for antibodies. Those sets came back negative. The blood tests themselves can be positive due to lots of reasons besides having an autoimmune disorder. You need to have symptoms corresponding to an autoimmune and likely more than one set of tests showing the presence of the antibody more than once. Cymbalta is an SNRI marketed for Fibromyalgia but I take Paxil bc I was taking that already and do not do as well on SNRI meds (Paxil is an SSRI). I take gabapentin (300 mg) up to three times per day. I choose to not take it every 8 hours but rather to take it at bedtime and then again only if needed. I also take 10mg of Flexeril at night because it helps your body relax got sleep. There have been studies done to see the efficacy of Flexeril as the prescribed pain medication for Fibromyalgia but I believe you build tolerance to it so it’s not really ideal. Lyrica is similar up gabapentin. Ketamine is offered for treatment resistant depression but I have not heard of that for Fibromyalgia. Low dose naltrexone I have but it’s not mainstream and I would think you would need to show you have tried and failed the first line medications. Have you tried Cymbalta, Lyrica or gabapentin? Many also try amitryptiline which is an “old school” tri-cyclic antidepressant that is primarily used at night for sleep but also has a favorable impact on pain.
Keep trying. Don’t see doctors that are over 45. Come in with a list of what you’ve tried and tell them you want to work with them and experiment. If that’s a non starter, leave.
Also psychiatrist could be an option that is better. But the same rules apply
If your doc will only prescribe FDA approved meds then Savella should be on his list too. It is the only SNRI created and approved for Fibromyalgia only. I switched to it from Cymbalta due to me practically feeling like a zombie on it. I still have ups and downs on it but it does seem to help more.
If your doc isn't open to listening to you and will only try certain drugs I strongly suggest switching docs or at least get a second opinion from someone else.
I got sent away to a neurologist for Fibro after I got diagnosed. I got then sent to a Physiologist. Basically a pain doctor and physical therapist rolled into one. They had a WAY better understanding about Fibro as a whole.
I take 900mg 3xday of Gabapentin. I have been on this dose for over 2 years. It doesn't help with not getting a flare-up. That's on me to monitor myself. BUT... on the days its bad, they sure take the pain from the tender points and dull them a bit. Makes it more bearable. I take Bupropion (150mg)for my antidepressant (I have ADHD, so it helps with that). Buspar(15mg 3xday) for anxiety. I used to take Flexeral. It just made me tired, unable to adult, and honestly made me go into flare up MORE because I couldn't feel my body. That is the downside with numbing yourself. I also know stress plays a huge factor. I think my Buspar plays a huge role because it lowers my anxiety levels.
I got prescribed medical grade lidocaine patches. I avoid touching or stretching my tender points at all costs. The ones under my shower blades I used to stretch to alleviate the pain, but it only prolonged my flare-up. Arnica epsom salt baths and giant ice packs. We know it's from nerve inflammation. Dealing with that is what times down a flare-up. That and sleep. 8hrs+ during a flare-up and then maybe a nap, too if possible.
There isn't going to be a one size fits all drug/plan for Fibro. I read every scientific study that gets published on Fibro. All the studies seem promising, but until it is peer reviewed, it's just not wise. Honestly, look up studies that are being done on Fibro. See if you qualify to participate.
I truly hope you find your happy mix of meds! Everyone is different, but you deserve to be helped properly.
I'm so sorry your doctor is making you feel helpless. This isn't what our healthcare or doctors should be doing when we are going to them in need. There are many medications used off label for chronic pain, LDN being one of them. I have fibro and arachnoiditis and I would go into flares constantly. About a month into the medicine they have been gone. I still get tired, and worn down when I over do it on certain days but this medicine has completely changed changed my life. I'm not stuck in bed, I can be active with my kids, spend time with my husband, and just start taking back my life. I still have bad days, but NOTHING like before.
It's absolutely worth it to try a new doctor if your current one isn't listening to your needs. It's your life, your health, and you deserve to have control in the direction it's going!
I FEEL this in my soul ! 😭 I'm I. SoCal as well... you would think, near LOS ANGELES we could find one progressive dr., or barring that, a compassionate one ! Hit me up if you need someone local to talk to.. I can tell you what I'm doing to stay sane. (Ish.) Lol
The fact that gabapentin is referred so much when friends I have in the medical field winced when I mentioned taking it makes me wonder. It doesn't work for me btw. Same with Lyrica and cymbalta. Did nada but gave me a ton of side effects.
Going to echo others and say that rheumatologists aren’t the best docs for fibromyalgia, it is emerging that it is not a “muscle” disease, per se.
I have found Health Rising to be a great source of info.
[https://www.healthrising.org/](https://www.healthrising.org/)
My physician has been very receptive to information I have given her from them, which led her to prescribe LDN, which has helped with fatigue and motivation.
Also lots of info coming that gut health is a factor, so a diet with gut health in mind is just generally helpful.
I’ve tried many of the anti-depressants and I think some have helped when I was feeling very down, but I’m not sure any helped with pain. Nortriptyline did seem to help with sleep but I’m too old to take it anymore.
Good luck. I’ve had fibromyalgia for over 15 years, everyone’s journey is different, but there is hope.
I used flexeril long-term (daily x2) and ended up with bladder issues. Once I quit that, bladder issues stopped. Flexeril isn't a great option for fibro.
I'm getting decent relief with Lyrica - but it's prescribed by my primary. My rhuem only addresses plaquenil. Recently all of the rheum's left my clinic and I need to find a new one. I'd like to completely redo all of my testing and see what else can be added in.
All that said, I'd go back to your primary. They can do a LOT and may be more open to help you. Acupuncture has been wonderful for me. I go to PT for stretching and gentle exercises. I've seen a pain psychologist. I've been open to just about every treatment that's available - basically, throw it at the wall and see what sticks.
Chronic pain sucks. Learning to live with it takes time. I've been at this 10 years. My body will change again and I have to adjust. I take my ibuprofen, sometimes a gummy, and get to it. Take a day or two of rest and do my best to LIVE.
The (not so) funny thing is that recent studies show just how ineffective gabapentin and lyrica are for fibro. Not to say it doesn’t work for some, good for you if it does, but the successful results were highly inflated and the side effects were downplayed significantly. Sounds like a good time to find another doctor to me (if it’s an option)
Check out Dr. Firooz in LA if it’s not too far for you. I saw her while I was living in Ventura, she was excellent, tried me on several medications before we settled on Amitriptyline. Comprehensive Rheumatology was the name of the place, and she will do appointments over zoom so you don’t have to make the drive for every appointment.
Lawsuits are the problem. People in the US file hundreds of lawsuits every year. Doctors are afraid of being sued, because they have been sued, a lot, for the ongoing deadly opioid problem. My suggestion is that you try some of the medications being suggested so that you can show why a particular med is not going to work. Dismissing a med because it is not strong enough for your pain may seem suspicious to a doctor, because of lawsuits.
I'm sorry you're experiencing that. Lots of patients just fall through the cracks like this. In most cases you'll want a doctor in the same state as you, I believe. Prescribing and treating across state lines can get tricky. If you want LDN, hop on over to agelessrx and get a prescription through them. They operate in any US state. It costs 35 bucks a month. It's a completely digital process. You just fill out a couple forms and then a doctor prescribes you the LDN and it gets shipped to you. Some people also legally import naltrexone from a foreign pharmacy. That option is cheaper (about 5 bucks a month) but more involved, and requires paying for a lot of meds all at once. I mean, it sucks that it isn't covered by insurance, but at least it's fairly accessible. I'd probably also recommend doing some self-research into dysautonomia if you haven't already. The most common dx is POTS. Dizziness, if it presents in a specific way, and heat intolerance point towards dysautonomia. Lots of people with fibro do have it comorbid. You need a cardiologist or neurologist to treat that, ideally one that has been recommended by the online dysautonomia community. In my experience, facebook groups seem to have the best doctor recommendation lists. It might also be worthwhile to look into me/cfs, which is one possible explanation for extreme fatigue, and again, sometimes comorbid with fibro. There's quite a strong patient community for me/cfs, with lots of work put into creating doctor referral lists.
I was diagnosed with me/cfs and POTS at the same time. The facebook support groups are really the best for help.
In my experience, pain management specialists have helped me much more than rheumatologists. Maybe see if you can get a referral to one?
This has been my experience as well. Rheumatologists act like I'm wasting their time once my labs come back normal. Pain management doc seems to understand I just want to regain prior functioning in my hands and have it conclusively ruled out that there is nothing mechanically wrong with them. (Almost all my pain is in my fingers, in very specific locations). Unfortunately I picked a Dr who mostly treats spinal stuff, but at least she referred me to a colleague whose focus is small joints and OT instead of treating me like a hypochondriac.
i dont have much to add but just wanna second this! my rheumatologist was extremely negligent but ive never had a bad experience with pain specialists
I am done with rheumatologists, they all act like they don’t want to deal with Fibro..one even said that the doctor will not treat you if you mention Fibro..I feel like these are the doctors they throw us to but none of them want to deal with it..just do tests to rule out others..then say well it’s fibro 🤷🏻♀️just have to deal with it..here are some pills that will make you feel like complete crap..mess your brain up even more..give you horrible side effects..yes even a ton of weight gain even though I just finished saying you need to lose weight 🤷🏻♀️..good luck! Out of everything I have tried Tramadol is the only thing that helps me get through my day with no side effects and feel as normal as possible..I went to a pain doctor and told him I am done with all of these other meds I feel best on tramadol he said no problem and finally not having to feel like a drug addict to be able to get some help with my pain. If they really want to know Tramadol actually has shown to improve pain in people with Fibro they tested it in rats..so sometimes the opioid does work for Fibro.
I have both Fibro and CFS/ME. Im pretty sure Lupas too but no one wants to add that officially despite the evidence. Tramadol is the only thing that stands between me and permanent bed rest. It's not been addictive in my case either. I used to take oxycontin years ago and the dependency I developed to that was a whole world away from Tramadol. Buprenorphine has been helpful too. I have a weekly patch as well as Tramadol. There's definitely a small dependency to the patch, yet I didn't experience that when taking subutex (the oral version of Buprenorphine). If I could only have one, I'd stick to Tramadol.
Tramadol saved me
Cymbalta is often the first one they will try. I got really good relief from Cymbalta but they removed Me from it to put me on Wellbutrin for smoking cessation which that did not help me I just had to decide to quit lol but when I asked to go back on Cymbalta I got zero relief… so it is hit and miss. I have arthritis and liver disease so literally there is not a lot my Rheum can give me but I did ask for Flexeril which she was happy to give me… I think it very much depends on the doctor, yours sounds as if he has been burned for prescribing opioids in the past.
Wait... You have arthritis and liver disease and it's NOT lupus? Have they thoroughly investigated?
Yes I also have issues with clotting so I have been thoroughly tested
There is seronegative lupus. That is very sus. Sorry you're dealing with that.
Thank you. I really wish they'd find a reason. Every doctor used to tell me how young I was and shouldn't be going through this… so there is something sus, but Noone will look into it too much because of all the testing I had when I first started clotting.
I’m so sorry you’re experiencing this. I had to go through a few such doctors myself. I actually found my current doc in a neurologist who has a lot of fibromyalgia patients that are under their care. I’ve been on Gabapentin, cymbalta (Lyrica), and Duloxetine before. None of them worked for me (got only bad side effects instead). I only recently learned that while they’re the first things docs often use for fibro patients, they’re all calcium channel blockers. So if you’re like me and experiencing the same side effects with each, or if they simply don’t work for you, you 100% have every right to tell them to do their own research and look into these yourself. You can tell them that using medications that all use the same method of action and have all failed you literally indicate that they’re not compatible with your body and that you need help through a different medication asap. Try also asking for access to tens units and a good PT recommendation. Maybe even look for neurologists or pain management specialists who are specifically women. I’m a person of color so I looked for a woman of color, or those similar to my ethnicities so that I can reduce the chances of being dismissed or seen as drug-seeking. It made all the difference in the world to talk to a better doc. Coz my current one actually understands and takes my word and my symptoms (quite visible) seriously, unlike the male docs who have all completely just either abandoned me, yelled at me, or verbally or physically harassed me. It’s the doc, it’s not you. And you deserve good healthcare, period.
I had a similar experience with my health over the past few years! Very frustrating and i understand the pain thatll put you through! My first question ofc is: have you tried any of the meds your doctors have recommended yet? I tried lyrica and a mere 50mg multiple times a day has helped. But ofc it doesnt work for everyone! Just sounded like maybe you had some anxiety about just going down the list and giving stuff a shot! My second question is: and everyone has their own answer, but do you value moreso knowing the cause, or finding treatment? For me at first, i wanted to know the cause. It was a long road of, like u mentioned, very inconclusive testing, few to no answers, and stress being added to my already debilitating symptoms. I def recommend testing for the more serious causes, but once those are out of the way, you may find peace in focussing more on the symptoms themselves. Third (just a comment): my dr also thought i was seeking painkillers. I was hesitent to try the "milder" meds cuz i was worried they wouldnt help. Ive had this issue with a lot of meds i take. But, after some trial and error, i actually have found meds for my various issues that arent too strong, but go a long way :) Im sorry to hear what you're going through, i know how scary and generally upsetting it is. Goodluck!
You need new doctors. If your primary care doctor isn't the problem, go back to that doctor. Can your primary care doctor manage your fibromyalgia? I'm also in California and have Kaiser. It's a difficult HMO to have with complicated medical issues like ours. Since I was diagnosed with fibromyalgia in December 2023, I've had a very hard time. Every medication I've tried has failed because the side effects were so severe I had to stop. When I mentioned pain medications (to be taken only as needed), he tried to send me to pain management. I do not want my health to be solely managed by PM. I have been with my doctor for 9 years. I had an appointment with my doctor today. It was such a pivotal appointment. I did a bunch of research, learned about the physical symptoms I'm having, and was able to have a very productive conversation. I felt that because I was knowledgeable about the medical symptoms I was experiencing, I was better able to help my doctor. Collaboratively, we decided on some medications and medication changes. It's quite ignorant for a doctor to tell you those are the only medications he uses. It shows his lack of knowledge about this condition. Not to mention his unwillingness to study and learn so that he is a resource for patients. Depending on your insurance, you should be able to see other doctors if they're within your insurance network. There are doctors who understand fibromyalgia and prescribe medications to manage it, and other symptoms/conditions that often occur as well. Have you considered seeing a concierge doctor or direct provider care doctor? They don't accept insurance. You pay a monthly fee to see them. There's less waiting for appointments, no red tape, and longer appointment times given. Regular insurance will cover prescription copays. And some testing may be covered. There should be lots of options for direct care down where you are. I live in a small mountain town in Northern California. There's a direct provider care doctor less than 30 miles from me.
I get plenty of muscle relaxers they are t helpful for me cymbalta has absolutely helped me. Soma and Flexeril are always a day late a dollar short and they take all strength away for streets ahead.
May I suggest finding a new physician?
Fibromyalgia is a syndrome, so it's still used as a catch-all for unexplained pain, weakness, and fatigue. Find another rheumatologist who treats symptoms while strengthening your physical and mental resilience... something you will not do on Gabapentin, Lyrica, Cymbalta, and all the rest. Also, Fibromyalgia is typically comorbid with ADHD, so an evaluation is beneficial, too. Some CNS stimulants really improve Fibromyalgia symptoms.
I didn't know that about ADHD, which I also have. Yay!
I'm in kern county, currently on medicaid (ty covid disaster benefits) and take gabapentin, meloxicam, cyclobenzaprine (as needed before bed), plus I have lidocaine patches. I see a neurologist, PT and pain management doctor for cervical spine and lumbar issues and widespread chronic nerve pain. I have a lot of overlapping symptoms with fibro but my doctor will not give me a diagnosis.
There isn't one cure all that works for everyone. Some things work for some and not others because of the type of pain they're having. When I was diagnosed a few months ago I found out that muscle relaxers and trigger point injections didn't work for me because it was nerve pain I was experiencing the most, not muscle pain. I started pregablin and eventually I was up to 100 MG 2x a day. I was experiencing less pain but it was still pretty bad some days. I was still consistently had really bad pain in my sacrum and hips and ended up looking into nerve blocking facet injections. I have an appointment on the 5th to be evaluated. I've found supplements, trying to cut a lot of sugar, carbs, and a lot of alcohol out of my diet (they cause inflammation which worsens symptoms), moving more and stretching a lot even if it is really hard to when I'm in pain, and making sure I drink a lot of water all help me. I hope that helps. I hope you find some relief.
I'd believe in getting a new rheumatologist. Amitripyline is better than cymbalta according to multiple studies so why he doesn't believe in it heaven knows. If your specialist is shit time to get rid of them.
All my rheumatologist does is tell me to not have any sugar or carbs at all…even nothing healthy like a sweet potato. What a joke. I’m not going back. I’ll just have my family doctor manage my care.
Exactly..I stopped going..it was ..well we did all tests and tried different things and it seems it’s “just Fibro” not much else to do..such a waste..then if I go back to my regular doctor ..he says you’re rheumatologist is supposed to be helping you..your bloodwork came back with very high sed rate..etc..etc..I know doc but I am going to pay another visit for him to just say..sorry it’s just Fibro can’t really do anything..then my regular doctor is frustrated…I say ..yeah imagine how I feel doc 😫
A rheomotologist once told me that there is no drug for now that cures fibro. Everything out there is experimental and most will cause long term side effects.. I was on gabapentin for a while and it caused brain fogs. That’s when I decided to stop taking it. Have you tried taking vitamin d, magnesium citrate, b-12, omega 3? They really helped me to get back my energy
Omega 3's give me horrible depression.
They're right. There is no drug that CURES fibro. It is not a curable condition.
Charge doctor asap. Clearly he has no concept of putting the patient front and centre. Once met a Dr like this. I hasn’t even sat down when he said ‘The first thing we need to do is get you off these pain killers!’ Having suffered with fibro for 13yrs and given his surgery reams and reams of documents from multiple experts in the field, even recommendations from the pain specialists, he decided addressing HIS objective of removing opiates was paramount to my problem. I left the Surgery and later found out that the internet was rife with criticism of their service. Put yourself from and Centre and find a different Dr. that understands this condition.
for me gabapentin at the max dose stopped that electrical and burning sensation completely but did nothing for anything else I want to try LDN
Gabapentin does treat many symptoms, initially seizures of course, but nerve pain, joint pain, insomnia, generalized pain And anxiety/panic attacks. Love the stuff. You can take quite a bit with few side effects. I’m on 600 mg in am and 900 or 1200 mg at night.
Yeah, have had several autoimmune disorders for 25 years. There is no one stop shop for pain relief. It’s up to me though to fight for help with my disease. Took 6 years of specialists. Now am on gabapentin, a lot of it, SSRI’s, immunosuppressant (this was the turnaround pill for me), anxiolytics, opioid pain patch, a long acting Tramadol for really bad days, supplements up the yin yang and sleep. Sleep more sleep. Always feeling like you have the flu. And more sleep. Joints also disintegrating and no amount of pills will completely block that pain. Even now, fully accepting my disabilities seems so..not me! Can’t remember if you mentioned it but a good clinical psychologist (the PhD type 😉) for pain management with CBT is great for yourself and gives friends and family some relief too. Keep up the good fight
Cymbalta made me super sweaty I’m now on Venlafaxine but idk how much it’s helping my pain. I’ve dropped my Lyrica by 300mg a day with my GP but I don’t know if I should do something else because I honestly can’t afford stuff that isn’t covered by government insurance so I’m just trucking along on a lil bit of lyrica. The colder weather has been a struggle and I’m truly hoping [location] gets its shit together with the cannabis prohibition so I have more options without having to be stranded at home or relying on the generosity of people for rides. edit: realising I shouldn’t just dump heaps about myself publicly online
In my opinion, this is happening because you are seeing a rheumatologist for a neurological problem. They initially got involved in treating Fibromyalgia because it was so common in people who had rheumatoid diseases. Just because it can be secondary to rheumatoid diseases does not mean it involves the same systems. Rheumatologists do not have expertise in the systems involved in fibromyalgia. They stick to FDA approved treatments because they don’t keep up with Fibromyalgia research. It’s time for you to find a new practice and new doctor. Find somebody who has expertise in fibromyalgia, not rheumatoid diseases.
LDN and medical cannabis for me have been a 10000000 times better than those meds. I chucked all my meds in the bin since. Whilst i still struggle and have awful flares, its nothing like the past. I told my medical cannabis pain consultant that its given me back aspects of my old life, im working more than in years. Give that doc the sack, and if possible try LDN and/or medical cannabis
I live in Southern California. I am treated at Southland Arthritis. I have a blood panel run that includes ANA and often CRP and SED rate. These are all inflammatory markers. The last test just had ANA run and it was high positive so it automatically adds in a three set reflex to test for antibodies. Those sets came back negative. The blood tests themselves can be positive due to lots of reasons besides having an autoimmune disorder. You need to have symptoms corresponding to an autoimmune and likely more than one set of tests showing the presence of the antibody more than once. Cymbalta is an SNRI marketed for Fibromyalgia but I take Paxil bc I was taking that already and do not do as well on SNRI meds (Paxil is an SSRI). I take gabapentin (300 mg) up to three times per day. I choose to not take it every 8 hours but rather to take it at bedtime and then again only if needed. I also take 10mg of Flexeril at night because it helps your body relax got sleep. There have been studies done to see the efficacy of Flexeril as the prescribed pain medication for Fibromyalgia but I believe you build tolerance to it so it’s not really ideal. Lyrica is similar up gabapentin. Ketamine is offered for treatment resistant depression but I have not heard of that for Fibromyalgia. Low dose naltrexone I have but it’s not mainstream and I would think you would need to show you have tried and failed the first line medications. Have you tried Cymbalta, Lyrica or gabapentin? Many also try amitryptiline which is an “old school” tri-cyclic antidepressant that is primarily used at night for sleep but also has a favorable impact on pain.
Keep trying. Don’t see doctors that are over 45. Come in with a list of what you’ve tried and tell them you want to work with them and experiment. If that’s a non starter, leave. Also psychiatrist could be an option that is better. But the same rules apply
that's the only drugs the FDA will approve for Fibromyalgia is what I was told. Sucks.
If your doc will only prescribe FDA approved meds then Savella should be on his list too. It is the only SNRI created and approved for Fibromyalgia only. I switched to it from Cymbalta due to me practically feeling like a zombie on it. I still have ups and downs on it but it does seem to help more. If your doc isn't open to listening to you and will only try certain drugs I strongly suggest switching docs or at least get a second opinion from someone else.
I got sent away to a neurologist for Fibro after I got diagnosed. I got then sent to a Physiologist. Basically a pain doctor and physical therapist rolled into one. They had a WAY better understanding about Fibro as a whole. I take 900mg 3xday of Gabapentin. I have been on this dose for over 2 years. It doesn't help with not getting a flare-up. That's on me to monitor myself. BUT... on the days its bad, they sure take the pain from the tender points and dull them a bit. Makes it more bearable. I take Bupropion (150mg)for my antidepressant (I have ADHD, so it helps with that). Buspar(15mg 3xday) for anxiety. I used to take Flexeral. It just made me tired, unable to adult, and honestly made me go into flare up MORE because I couldn't feel my body. That is the downside with numbing yourself. I also know stress plays a huge factor. I think my Buspar plays a huge role because it lowers my anxiety levels. I got prescribed medical grade lidocaine patches. I avoid touching or stretching my tender points at all costs. The ones under my shower blades I used to stretch to alleviate the pain, but it only prolonged my flare-up. Arnica epsom salt baths and giant ice packs. We know it's from nerve inflammation. Dealing with that is what times down a flare-up. That and sleep. 8hrs+ during a flare-up and then maybe a nap, too if possible. There isn't going to be a one size fits all drug/plan for Fibro. I read every scientific study that gets published on Fibro. All the studies seem promising, but until it is peer reviewed, it's just not wise. Honestly, look up studies that are being done on Fibro. See if you qualify to participate. I truly hope you find your happy mix of meds! Everyone is different, but you deserve to be helped properly.
In BC Canada many people get their LDN prescriptions from a naturopath. Idk if that’s an option in California?
I'm so sorry your doctor is making you feel helpless. This isn't what our healthcare or doctors should be doing when we are going to them in need. There are many medications used off label for chronic pain, LDN being one of them. I have fibro and arachnoiditis and I would go into flares constantly. About a month into the medicine they have been gone. I still get tired, and worn down when I over do it on certain days but this medicine has completely changed changed my life. I'm not stuck in bed, I can be active with my kids, spend time with my husband, and just start taking back my life. I still have bad days, but NOTHING like before. It's absolutely worth it to try a new doctor if your current one isn't listening to your needs. It's your life, your health, and you deserve to have control in the direction it's going!
I FEEL this in my soul ! 😭 I'm I. SoCal as well... you would think, near LOS ANGELES we could find one progressive dr., or barring that, a compassionate one ! Hit me up if you need someone local to talk to.. I can tell you what I'm doing to stay sane. (Ish.) Lol
The fact that gabapentin is referred so much when friends I have in the medical field winced when I mentioned taking it makes me wonder. It doesn't work for me btw. Same with Lyrica and cymbalta. Did nada but gave me a ton of side effects.
Going to echo others and say that rheumatologists aren’t the best docs for fibromyalgia, it is emerging that it is not a “muscle” disease, per se. I have found Health Rising to be a great source of info. [https://www.healthrising.org/](https://www.healthrising.org/) My physician has been very receptive to information I have given her from them, which led her to prescribe LDN, which has helped with fatigue and motivation. Also lots of info coming that gut health is a factor, so a diet with gut health in mind is just generally helpful. I’ve tried many of the anti-depressants and I think some have helped when I was feeling very down, but I’m not sure any helped with pain. Nortriptyline did seem to help with sleep but I’m too old to take it anymore. Good luck. I’ve had fibromyalgia for over 15 years, everyone’s journey is different, but there is hope.
I used flexeril long-term (daily x2) and ended up with bladder issues. Once I quit that, bladder issues stopped. Flexeril isn't a great option for fibro. I'm getting decent relief with Lyrica - but it's prescribed by my primary. My rhuem only addresses plaquenil. Recently all of the rheum's left my clinic and I need to find a new one. I'd like to completely redo all of my testing and see what else can be added in. All that said, I'd go back to your primary. They can do a LOT and may be more open to help you. Acupuncture has been wonderful for me. I go to PT for stretching and gentle exercises. I've seen a pain psychologist. I've been open to just about every treatment that's available - basically, throw it at the wall and see what sticks. Chronic pain sucks. Learning to live with it takes time. I've been at this 10 years. My body will change again and I have to adjust. I take my ibuprofen, sometimes a gummy, and get to it. Take a day or two of rest and do my best to LIVE.
The (not so) funny thing is that recent studies show just how ineffective gabapentin and lyrica are for fibro. Not to say it doesn’t work for some, good for you if it does, but the successful results were highly inflated and the side effects were downplayed significantly. Sounds like a good time to find another doctor to me (if it’s an option)
Also, the class action suit for severe memory loss against Gabapentin should not be forgotten.
The irony of me completely forgetting that existed isn’t lost on me. Thanks for the reminder!
l take cymbalta and lyrica for RLS and panic and nervous episodes but lm on fentanyl patches for the fibro pains
Check out Dr. Firooz in LA if it’s not too far for you. I saw her while I was living in Ventura, she was excellent, tried me on several medications before we settled on Amitriptyline. Comprehensive Rheumatology was the name of the place, and she will do appointments over zoom so you don’t have to make the drive for every appointment.
My rheumatologist flat out won’t treat fibromyalgia. 🤷🏼♀️
Lawsuits are the problem. People in the US file hundreds of lawsuits every year. Doctors are afraid of being sued, because they have been sued, a lot, for the ongoing deadly opioid problem. My suggestion is that you try some of the medications being suggested so that you can show why a particular med is not going to work. Dismissing a med because it is not strong enough for your pain may seem suspicious to a doctor, because of lawsuits.