Fybromylgia patient with symptoms that don't fit...
 

Hello everyone. I am new here and have been experiencing some issues that my Fybromylgia doctor does not believe is related to Fybromylgia. I have been having issues walking, on and off, each time getting a flare it is worse.
Extreme weakness in the limbs as well. Was seeing a Nuro and the ran a whole slur of test and basically said there is nothing wrong with me. I can name a whole list of issues, but this is the symptom I am worried about really because it does not fit with my Fybromylgia, so I am told.
What do you think?
Thanks!
Christine

hello and welcome to NT,

you might try another dr for a 2nd opinion. another neuro. get copies of your test results and any scans etc you had done. if you call the place where you had the tests you can go down and p/u the copies.

also, if your rheumy refers you to the neuro, or your pcp, it may carry more weight. and, keep a journal of your sx's ( symptoms) with the dates. it will help the dr when you seem them.

let us know how you make out.

Yes, a 2nd Neuro opinion is a good idea, although MS doesn't
always show it's ugly face, in it's early stages.:(

Please let us know how it goes for you. :hug:

Please no throwing eggs because I wouldn't consider implying I know anyone's particular situation but I do see more than a few people diagnosed with Fibromyalgia who later find it to be another chronic illness, like MS, instead.

Personally I think is some cases Fibro can be a junk diagnosis for someone with chronic pain of unknown origin. I'm not criticizing the patients but rather the few docs who I sometimes think are ok with taking the easy way out especially since the large majority who are diagnosed with this condition are women. :(

Hi Jules, I know what you mean, I wonder myself if Fybromylgia is even the right diagnosis. And it took years to find a doctor that would take me seriously and a few more years to rule out all possible conditions until I finally got a diagnosis of Fybromylgia. In the last 4 years or so I have been experiencing worse flares and seemingly new symptoms each time. Currently I am in ALOT of pain, have constant headaches, some being migraines, bad coordination, I cannot sleep at night, weakness in my arms and legs, and extreme fatigue. I do have the tender points the basically define Fybromylgia, but I think there is more going on. My eyes don't adjust we'll, I cannot hear well, but the eye and ear dr says they are fine. I worry that one day I will not be able to work because I am just so exhausted. I am currently taking cymbalta and b12 which has helped ease the symptoms until I have another flare. I hope I can find a good dr that will look into this more. I do not know what to do.

Jules, I think that you are right on with respect to some MDs taking the easy way out. In my practice over the course of 30+ years, I've seen many people (at least 90% female), who have been "diagnosed" with FM, yet have not had the screening test perfomed. Most are taking ADs as well as some sort of heavy duty pain med. In my area hydromorphone or Gabapentin are not uncommonly prescribed pain managment meds for FM.

Get this...not long ago I called a patient's MD because I was concerned that she either had a thyroid issue or possibly lymphoma (her neck was swollen around the throat area) that may have been causing some of her symptoms. I wanted the MD to look into it and called because the patient had basically been dismissed by him when she had brought it to his attention.

You'll never guess what he said to me...

"The woman is suffering from the four Fs. Forty-ish, female, fat and fertile!"
I bit my tougue so that I wouldn't blurt out what I thought that he was suffering from :mad:.

I got her in to another MD and that MD diagnosed the patient with hypothyroidism. She's been taking synthroid as well as a synthetic form of T3(her levels were in the ditch), and is doing much better now even though she still has symptoms of FM.

Unfortunately, it seems that once someone gets the diagnosis of FM, all too often, every symptom gets attributed to that without further investigation...even by some specialists.

Keep pressing your doctor to investigate the symptoms you are having Cdimaio. Having difficulty walking and extremity weakness doesn't seem to fit with typical FM...although like with MS, everyone seems to have variations of similar symptoms. Hopefullly it turns out to be nothing serious.

Please do keep us posted.

Wtih love, Erika

i was dxd with fibro in '85...I have bad knees, and had both scoped by my former orthopaedist. he told me in 2000 that he and his practice had begun to see fibro patients later dxd with MS. I didn't even know what MS sxs were at that time.

Fibro can present differently to different patients. After my 1st neuro dumped my insurance, I went to see a neuropathy specialist at the U of Chicago...she said all of my MS-like sxs were from fibro.

I gave up trying to find out what was causing the strange sxs for a few months...then went to a new neuro who put me on a wait and watch list. A year later I was dxd with MS...

I still feel that some of my sxs are from fibro. The pain is different than MS pain, for sure. And I know that fibro can cause many of my MS sxs. But fibro doesn't cause lesions. And some with early MS don't have lesions that can be seen.

Keep a symptom journal with dates of onset and dissipation...try not to become obsessed about it though (easy to say:rolleyes:)...live your life to the best of your ability while keeping your eyes open to what's going on with your body.

PS I was on Cymbalta-don't go off cold turkey if you ever decide to go off...I wasn't feeling myself on it and it didn't help much with my pain...so I don't touch that drug any longer...

Thanks to everyone for their comments. I can definitely relate to doctors not wanting to dig into the real cause of a symptom and chalking it up to Fybromylgia. My rheumatologist even told me, " we'll, it does not sound like a Fybromylgia sympthom, but you never know". No suggestions to look for the cause. I have had to be very persistent the last 7 years just to get to where I am, which is not very far in my opinion. I really like the Cymbalta. I have been taking it for about a year and with the exception of a couple of episodes, I have been getting some relief. So far this is the only thing that has helped. When my symptoms get real bud, that is when I start with gait issues and that is where I am right now. I feel like I am dragging my feet and they feel like my legs weigh too much to move them. The Nuro conducted Nuro exams, and several nerve conduction tests as well as test muscle strength, but said all was fine. I do not understand?

"The Nuro conducted Nuro exams, and several nerve conduction tests as well as test muscle strength, but said all was fine. I do not understand?"

I wish that the docs would complete such statements...
"All is fine on testing but your symptoms indicate otherwise."

or

"All is fine on testing that we've conducted so far but symptom causes do not always show up on testing, so..."

Hang in there Cd. Many of us have had clear tests despite ongoing symptoms, only to have the cause show up later on repeated testing.
Unfortunately, those causes often take a while to show up.
Glad that you are getting some relief with Cymbalta.

With love, Erika

Jules A,
I agree with you completely on this. I too was diagnosed years ago with fibromyalgia and doctors feel like ok, we have a dx for you now here are some pain pills , now go away. But I refuse to take pain pills and try to take care of things as natural as possible.
However, my doctors are left shaking their heads and looking frustrated at me now. Symptoms have changed from what I have been use to with the fibro. 2 years ago I started with muscle weakness for no apparent reason where opening a jar was a joke, that is if I was lucky enough to keep a hold of it before I dropped it because dropping things became a new symptom too. Now 2 years later I am still looking for answers and they still shake their heads. Muscle weakness for me has decreased by like 60 % and walking hasn't been the same since september cause I walk like i'm drunk, and speech issues are bad along with many other new symptoms.
I recently heard a doctor tell his story about when he was in med school, ( he's a younger doctor) that " fibromyalgia" was the " F " word in med school. One that none of them wanted to discuss. How sad. But this has me wondering too about whether or not it has been fibro all these years or early symptoms of MS.
Thanks for your post cause you brought up a real good point. Doctors are just too willing to dismiss patients these days.