Misdiagnosed for years

[Dee4]

Hi everyone I am new here and all of you are have so much experience with fibromyalgia.I was diagnosed 15 years ago with lupus and RA when i moved away and went to another doctor my test came back neg for both I went to two other doctors bc I couldnt believe all these years I believed what the doctor told me.I went to another doctor and had a few test done and was diagnosed with fibromyalgia, I also have hyperhydrosis in my hands and feet the swelling in both hands and feet are bad I can hardly hold anything in my hands does anyone else have severe swelling their hands I hand a ultra sound and the tec said oh boy your hands are very swollen you have RA but nothing showed up no fluid nothing I was wondering also I have pain in between my shoulder blades and hurts to take a deep breath I had scans done and again nothing shows up .Thank you for reading if you have any of the same things going on I would kindly appreciate any commands

 

[JayCS]

Hi Dee, and welcome!
Well, one of the most common experiences with fibromyalgia is to be misdiagnosed for years - so welcome to that club!
Altho I must say when my fibromyalgia could no longer be ignored it only took a few months for me to get diagnosed, but maybe cos I wasn't unprepared and persistent. Same goes for my MCAS when it took on momentum, because again I knew where to look on the web to self-diagnose and was lucky to quickly find someone to confirm it. But that diagnosis explained decades of intolerances.

Good you got a 2nd and 3rd opinion, that's always been my way of doing things.
Are you saying your lupus and RA were both wrong? Could you have those as well as fibro? (The ACR 2016 criteria say that's completely possible.)
How do you explain your hyperhydrosis? In this severity I'd not have thought "that's fibro" - can't blame everything on the fibro.... Was it first seen as RA, and now as stand-alone? How do you see it yourself?
Pain between shoulder blades with no explanation: Have you tried anything, like the great variety of youtube exercises on this?
Hope you feel good here and we can get a few puzzles solved!

 

[Dee4]

Hi JayC Thank you for responding Yea lupus and RA the doctor said Bc my ANA came back negative for both that he ruled both out Then did a ultra sound of both hands and X-rays no damage to my bones so he ruled out RA My hyperhydrosis I have since I no of since the age of 5 when no one would hold my hand at school when we had to line up or dance A lot of doctors don’t treat it and the ones I did go to want to inject 40 or more shots of Botox in each hand and it only last 6 months So I haven’t ever been able to wear Sandals and have to buy shoes a lot and go through a roll of paper towels daily

 

[JayCS]

My hyperhydrosis I have since I no of since the age of 5

That might make it independent of fibro? Or one of the first signs? But: I admit I forgot that hyperhydrosis is sweating (I used to sweat a lot too). I thought it was a word for very severe swellings. So both sweating and swellings can be associated with fibro, and swelling often mimics RA.
Did you find anything helpful during the time of misdiagnosis all the same?

 

[Dee4]

The only thing I did notice that I was on methotrexate for 15 years and now that I am not on it the swelling and my grip is horrible I can’t even hold my coffee cup This doctor put me on lyrica

 

[JayCS]

methotrexate for 15 years and now that I am not on it the swelling and my grip is horrible

Well as that's a pretty harmful chemical, given for autoimmune in low dose and cancer in higher dose, doesn't that sound as if you were diagnosed rightly, and you still have something autoimmune, just not lupus or RA? How does your new doc explain that "he" is making the swelling and grip worse? You do know that's a common side effect of pregabalin/Lyrica? What about switching or trying just supps & exercises instead?

 

[StarHome]

I am a 70 year old woman.
I have been in the VA Medical system for years.
I did not develop symptoms until a very large heavy framed mirror fell on the back of my head and neck 25 years ago.
The nerve pain and muscle spasms were debilitating.
When I tried to explain these to my Doctor, he seemed confused and not really alarmed.
The Neuroligist he finally sent me to thought I may have Epilepsy. I never thought that.
When they did the EEG and found nothing, they wanted me to have Psychiatric help. Which I refused.
I was put on Gabapentin and Requip by the Motor Disfunction Clinic which deals with Parkinsons.
They asked for me to have further help but nothing was done.
Niw, I have Neurologists listening. They have increased my Gabapentin and put me on Senemet. Which is helping.
I am also have been registered in Telehealth and the Pain Clinic.
The Neurologist put that I appear to have symptoms of Fibromyalgia.
So far I have had no consult in it.
I know my symptoms of being unable to have any thing but silky or smooth fabrics next to my skin. Long contacts like long cuddles etc. is very painful.
I have nerve pain that spreads throughout my body and severe muscle spasms.
Loud sounds really make my nerve pain start, as well, some bright lights.
Is there any relief from these or ways to deal with them

 

[JayCS]

Oh dear, that's quite a load, StarHome!

Is there any relief from these or ways to deal with them

Definitely things you can try for improving, probably not cure.
@sunkacola's general advice post here is a good start for anyone with any pain symptoms. And connecting here with further details and questions. Whether you have fibro or not.

Gabapentin and put me on Senemet

Gabapentin is for neurological pain, so understandable. And is often used off label for fibromyalgia, if some of our pain seems neurological.
Sinemet is for Parkinson's and raises dopamine using levodopa (also helps RLS).
If it's that that helps more, that might give a clue - has Parkinson's been formally excluded? A doc gave me levodopa to see if it helps sleep, so to "diagnose" RLS. It didn't. Quite a few serious side effects, so nothing to play with if it's not helping a lot.

The Neurologist put that I appear to have symptoms of Fibromyalgia.
So far I have had no consult in it.

If you're keen to judge for yourself you could do the test on our main site or have a direct look the ACR 2016 criteria on which it is based... These criteria state that you can well have something else, but if you have the appropriate symptoms, then the fibromyalgia diagnosis should be given. In my experience it might point you to more helpful treatment as well as bringing you here.

I know my symptoms of being unable to have any thing but silky or smooth fabrics next to my skin. Long contacts like long cuddles etc. is very painful.

Allodynia we call that, various sorts depending on the trigger (e.g. hot/cold is also possible)

I have nerve pain that spreads throughout my body and severe muscle spasms.
Loud sounds really make my nerve pain start, as well, some bright lights.

Pain only in the ears is now being called pain hyperacusis, noxacusis, auditory nociception or noise-induced pain, according to healthyhearing "a new diagnosis in the field... in the last 10 years". But you mean all over, so things like the article "Mother of two develops excruciating nerve condition triggered by loud noises" in the Australian thenewdaily might come familiar. Her diagnosis is complex regional pain syndrome, CRPS. If you haven't had that considered that's what I look out for.

Is there any relief from these or ways to deal with them

She uses "prescription medicines, spinal cord surgery, ketamine infusions, physiotherapy and is currently trialling cannabis oil".
Best strategy to "deal" with pain mentally is the "radical acceptance" that Acceptance and Commitment Therapy uses, cos like the serenity prayer it helps motivate as well as accept, which saves a lot of energy.
Hope you find some good things!