Cant find a doctor, who understands Fibromyalgia

[RobynG]

I was finally diagnosed about 2 years ago by a neurologist after several tests and scans. He prescribed me meds and told me to follow up with my primary doctor. Well, he had no clue about Fibromyalgia and when I had side affects from different meds, it took him forever to get back to me. The last meds caused me to gain 50lbs in 3 months. Someone mentioned for me to find a rheumatologist. So I did about 6 months ago, after my initial I thought he'd be better, but again he's no better, he took me off all my meds and gave me something for restless leg syndrome. I called the office to let them know i was in alot of pain and that my muscle cramping was unbearable and his nurse pretty much called me a drug seeker. I went on their portal and left the doctor an email and he put me on new meds but that whole situation left a bad taste in my mouth, not to mention I'm still in pain but afraid to call them back. SMH

 

[cookiebaker]

i get it - pretty much a similar situation here. They all have heard of it, but have no real clue on what to do about it.

this forum, and many other sites devoted to fibro, often have doctor lists - my best advice is start looking these lists over and see if you cant find someone near you on one of them.. there will be a fair amount of overlap between sites, but there are also unique listings at every site, so it is worth the time and effort to go thru as many as you can find

 

[sunkacola]

hello @RobynG , You may not know this but there are a lot of things you can do to help reduce or even eliminate some of the pain you are experiencing, and without using drugs at all. It is possible that if you try some of those things you may have a reduced need for the medications and be able to avoid being called a drug seeker because you will be able to manage on non-opiate or addictive drugs. I suggest you read the following post and try any of the things listed that you possibly can. Best of luck, and stick around because there are a lot of helpful and supportive people here.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Rhyl]

Someone mentioned for me to find a rheumatologist. So I did about 6 months ago, after my initial I thought he'd be better, but again he's no better, he took me off all my meds and gave me something for restless leg syndrome.

I discovered that some rheumatologist's treat fibro and some don't. I was diagnosed by a rheumatologist, and I'm not on any meds. She has recommended aqua therapy (which I currently can't afford). I take something for RLS, but she wanted me to try more lifestyle-type changes and the aqua therapy before we did meds.

 

[JayCS]

I discovered that some rheumatologist's treat fibro and some don't

Yeah, that's because fibro isn't rheumatological. But it mimics that, so that has to be checked foremost. And that's where the docs can decided to specialize on it or no.
Praps better a clear 'no, I can't' than an 'OK, I spose I have to'. They don't, there's no rule.
Where does it fit most? Praps pain docs? Well no, they're pretty powerless there too, unless having chosen to specialize on it.
The main criteria used worldwide are by the ACR, R meaning rheumatologists, and they've done that in 1990, improved 2010/11 and again 2016, and the 2022 UK guidelines are based on these. The second most reputable criteria are by the AAPT, P meaning pain.
As it's an all-encompassing condition, it'd fit to a specialist for pain incl. headaches, sleep, fog, gut and depression and more. A real all-rounder. so it often ends up with a GP / PCP. Who are just as overwhelmed with all our details.
Daniel Clauw, an important researcher having worked on all these sets of criteria, and is Professor for Anaesthology (= pain doc), and Internal Medicine (Rheumatology) and Psychiatry. And he's quite a nice bloke too... But I still don't think he could treat me, cos like many of these researchers he has or at least had a theories how it works which don't fit to me.

 

[jschneider444]

How about following up with a pain management doctor? The last rheumatologist I saw told me to do just that which seems like a cop-out but she was of no help other than this referral.

 

[sunkacola]

How about following up with a pain management doctor? The last rheumatologist I saw told me to do just that which seems like a cop-out but she was of no help other than this referral.

The only thing about going to a pain management doc tor is that they usually are simply pill dispensers. There are exceptions, of course, and some pain management doctors are good. But if @RobynG is concerned about having been accused of drug seeking, a pain doctor is not the place to go to avoid that. These days pain doctors do drug tests on people every time they go in and are even more suspicious and likely to call a person a drug seeker than a regular doctor is. Just saying.

 

[hope23]

I called the office to let them know i was in alot of pain and that my muscle cramping was unbearable and his nurse pretty much called me a drug seeker.

This is one of those things that makes me WILD!!! Its right up there with people saying those with fibro have low pain tolerance!

I have also been accused of this in a very busy chemist with loads of people around me. I had been going to this chemist for over 2 years, they knew me, knew what my health was like, the pharmacist in question was a temp. I think had i not been sick for 3 years at that point and gone through i lost count of how many saying theres nothing wrong with me. Im also a very blunt and upfront person. I quite clearly (and loud enough for those around me to hear as well, i have nothing to hide or be ashamed of) stated that i think my doctor knows my health, current condition as well as all the meds im on better than you and the reasons why(i.e. stick to your friggin lane and dont try play doctor), I'll take my medications now THANKS!!!!! And walked out, i then also rang the owners of the chemist and formally complained and stated that if i was ever served by her again i would go to a different chemist, i dont take all this medication cus its fun and im not going to put up with someone so ignorant and judgemental without knowing the facts.
Keeping in mind all the staff in the chemist knew me, had seen me at my worst and the constant ups and downs of health.
Just because we dont fit into a box doesn't give anyone the right to throw out ignorant and damaging opinions with no basis in fact and without fully knowing your situation

Im so sorry this happened to you

 

[cookiebaker]

Pain management is definitely more likely to go the drug route over other methods of managing.

I have not run into the "drug seeker" attitude as yet, but i tend to shy away from taking things that I dont absolutely need... like the thyroid meds.. those are necessary.

What I have run into, tho, is a doc or two that want to put things off on the fibro diagnosis, when I know it is not related.... i know what my fibro symptoms are and where they are located... but they want to try to lump other things in with it. that can also be very frustrating.

 

[jschneider444]

My pain Dr group will never prescribe opiates for pain. They're all about doing procedures to alleviate the pain.

 

[sunkacola]

My pain Dr group will never prescribe opiates for pain. They're all about doing procedures to alleviate the pain.

You are very fortunate to have a place that is so different from what a person usually finds at such places. Which is why it's not a bad idea to check it out if a person wants to, because you never know....you may find a place that is more modern and enlightened than the pill dispensers.

 

[Cuddley123]

hello my doctors would never listen to me made me feellike i was lying they dont believe its reel i would come away crying because the pain was very real ive changed my doctor now hoping it will chagend i will let you whenive seen them

 

[lonewolf 63]

i know the feeling ,i dont go to the doctors much , i hate even going for blood tests because they make me feel
like a hypochondriac ,even worse for me because i wont take there crap that jsut give you a load more things to deal with
i use topical balms and qi gong and heat pads ,its tough at times ,then to be doubly insulted by the way your treated just upsets me so much i cant face it , the only med that didnt cause me any side effects was LDN ,and they wouldn't prescribe it ,and i couldnt afford to keep going privately

 

[cookiebaker]

the only med that didnt cause me any side effects was L. D. N. ,and they wouldn't prescribe it ,and i couldnt afford to keep going privately

not sure where you are located, but for me, even getting it prescribed, insurance wont cover it - which is dumb.. but there it is.
the reason they wont cover it (in the USA) is because it is not specifically approved by the FDA for treatment of the various things it is used for - it is considered "off label usage", despite the fact that it does help a great number of people.

 

[kap]

That is the most frustrating thing with fibromyalgia - no one specialty either claims it or is clearly not under one umbrella of specialty. I asked my neurologist if it was under rheumatology or neurology. It was emphatically stated rheumatology, but few to none rheumatologists around here will treat it. Fortunately I have a great primary provider who knows what he's doing. I just keep doing what I have been - enjoying the good days, taking care on my bad ones, and letting my primary know what isn't working so we can adjust.