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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
533 Members
Avatar universal

Little Update re. Fibromyalgia, Autoimmune Disease, etc.

Hello Limbolanders!

You were all so kind in replying to my last post so I thought I'd come and give a little update. Jen and Maria, you mentioned fibromyalgia as a possible explanation for some of my symptoms so you might find this interesting.

I saw my rheumatologist this past week. I have all sorts of ongoing symptoms so it's always hard to figure out what I want from an appointment with her or any of my other doctors. What I really want is answers and a diagnosis, but right now I would settle for some good symptom management. I never get either!

My rheumatologist listened to me describe my ongoing issues like the tingling/burning, muscle and joint pain, GERD, migraines, flu-like feelings, skin changes, and so on. She did a brief physical exam during which she pressed on a number of areas (neck, shoulders, hips, etc.) and none were painful. She said that my story and the fact that I am a 30-year-old woman make her believe that I may have fibromyalgia. Even though I have a high + ANA which indicates autoimmune disease (or rarely, cancer or infection) she said "I don't think the presence of those antibodies is the cause of your symptoms". Okay, that's clear enough. She explained a bit about what fibro is and that the treatment would be the Lyrica I'm already taking (from the neurologist) and that she'd follow up with me in 3-6 months because it would be interesting to see whether I develop a rheumatic disease (like lupus) down the road because they'd uncovered these antibodies in my bloodwork that means I have some sort of autoimmune process going on.

I asked a couple questions along the lines of "But could fibro explain...?" and then I went home. I know fibro is very real and I'm comfortable with being diagnosed with it AS LONG AS I ACTUALLY HAVE IT. I looked it up online later and I really question the diagnosis. She didn't actually give me a diagnosis though; she just said she thought I had it. What confuses me is that I had zero tender points out of the 18. Also, I read that since fibro is a diagnosis of exclusion, the doctor must exclude other similar diseases. The rheumatic diseases (lupus, scleroderma, Sjogren's, RA, etc.) have definitely NOT been excluded. If anything, they have been shown to be a likely culprit because I do have this positive bloodwork. My levels on the ANA test were in the higher range and I've been told many times that levels that high are significant. Lower positives can be meaningless. I also once had a positive rheumatoid factor though it was negative the other 2 times it was tested. The ANA has always been positive (tested 4 or 5 times).

I am very frustrated with the attitude of "If we don't know what you have, you must not have anything" and now that has morphed into "If we don't know, you must have fibromyalgia". Like I said, I am not in any way against the diagnosis if I do have it, but at the very least I think I might have fibromyalgia plus an autoimmune disease. That happens a lot.

So, that's my fibromyalgia update! I was told to take the Lyrica, sleep, and exercise. I will do my best to follow those recommendations (still struggling to exercise with my 3 young kids and don't sleep terribly well for the same reason), but I feel let down.

I love to hear your thoughts on this,

Zoe
3 Responses
Avatar universal
I must add a couple quick things. I am still seeing a neurologist. I have an appointment in 2 months. I've just done a sleep study and worn a Holter Monitor (I get heart palpitations so he is ruling out cardiac causes/issues). I'm supposed to get a new brain/spine MRI before the appointment too, but I don't think it's been scheduled. I must follow up. The neurologist does not know what's going on with me, but was willing to investigate. The only abnormality he found in the exam was that my knee reflexes are asymmetrical.

I see a naturopath and she has suggested acupuncture for my neuropathy. Does anyone have experience with this?

I also saw an endocrinologist. He tested thyroid levels (perfect) and hormonal levels. My prolactin was high and estrogen low. I'm still breastfeeding my daughter so she said this might explain it, but to come back in 6 months for a re-test. There are a couple rare diseases that I have some of the symptoms of (carcinoid syndrome and phreochromacytoma - sp?) so he wants me to do a 24 hour urine collection WHILE experiencing symptoms. So I'm waiting for some particular symptoms to crop up again so I can do that.

My left eye has been very blurry more than usual with some pain behind the eye and on the left side of my head (mild). I'm going to see my optometrist in a couple weeks and he will refer to the opthamologist in his office if he thinks it's necessary. I couldn't self-refer.
1627868 tn?1333886342
I'm glad you're going back to see your neuro.  Don't cancel that appt.  There definately can be more than one thing going on, and from all I've learned about fibro, there is more often than not more than one dx.

I understand your feeling about fibro.  That's exactly how I felt!  There is NO way that I could have fibro, I thought.  I had only 2 tender areas, and those areas are where I have problems with muscle spasms.  My doctor told me that it doesn't really matter if you have them or not.  

It is also a dx of exclusion, but I think that they pretty quickly can dx you based on your chronic symptoms, problems lasting longer than 3 months, come and go, your age, and being female.  Poster child for fibro.  That's what I was told.  But a good doctor will also notice right away that fibro is not all that's going on.

A lot of doctor's DO pin this dx on their patients when they themselves don't believe in it or don't understand it.  It's kinda sad, really.  It's such a scapegoat for them!  They then don't have to do any further work to figure out what else is wrong.

Read up about fibro, but only from reputable sites or books.  There is a lot of misinformation out there about it.  I wish I could copy and paste the book I got from my doctor.  It is awesome and very informative.  But also make sure you don't give up and keep that appt with the neuro.  Don't let them dump all your problems onto the fibro dx!

Take care and I hope you get some answers soon!
Sarah
551343 tn?1506830518
The diagnosis test most usually consists of applying relatively light-medium pressure to these “sensitive points” and if the patient experiences discomfort on more than 11 of these places that is a fairly reliable indication that FMS is present.

As your doctor found no tender points and only really checked about 3 areas I cannot see how that person can say you could have FMS. But then i am not a doctor lol.

You can have Lupus with negative tests, it does have a name but for the life of me I cant remember it. My brain fog today.

My father was diagnosed with LUPUS with negative ANAs.

I think your doctor is really saying let us suck it and see attitude.

It sounds like an autoimmune problem, and many people with Lupus have Fibromyaligia as well.

I agree with Sarah do not cancel your neuro appointment. xx Maria
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