1. < Autoimmune Diseases

Fibromyalgia and autonomic peripheral neuropathy

Posted by mikee @mikee, Nov 30, 2016

I was first diagnosed with fibromyalgia in 1985 and autonomic peripheral neuropathy in 2005.
I read an article in JAMA or Lancet the said individuals with autoimmune diseases often have endocrinological disorders. I went to an endocrinologist who had read the same article. He performed tests that showed a growth on my adrenal glands, fortunately benign but affecting functionality.

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Parus | @parus | Aug 2, 2017

I have been struggling w/ trying to do the exercises by PT people...I am only there for my knee so what it does to the rest of me is not important...I will not mention any new pain to pain specialist. I am all for PT...knee is the least of the pain right now. Sure, build up those quads and glutes, it will help. Just following protocol.

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Staboo | @staboo | Aug 20, 2017
In reply to @kanaazpereira "Hi @mikee, You are right: autoimmune diseases do affect gland in the endocrine system. There is..." + (show)
@kanaazpereira

Hi @mikee,

You are right: autoimmune diseases do affect gland in the endocrine system. There is a great article (about the conditions being related) from the National Institutes for Health (NIH), which you can read here: http://bit.ly/2gPuhQh

I'd also like to introduce you to @bobsconnect, @jigglejaws94, @oldkarl, @johnnyzee3, @tbeckys, @kathyzendner, @mojoearle who have all discussed some form of neuropathy, and can provide some insight.

@mikee, do you have a family history of autoimmune disease? How are you managing your pain?

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So sad that your doctors lack empathy and will not respond proactively. I get it. Same here

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steeldove | @steeldove | Aug 20, 2017
In reply to @parus "I have been struggling w/ trying to do the exercises by PT people...I am only there..." + (show)
@parus

I have been struggling w/ trying to do the exercises by PT people...I am only there for my knee so what it does to the rest of me is not important...I will not mention any new pain to pain specialist. I am all for PT...knee is the least of the pain right now. Sure, build up those quads and glutes, it will help. Just following protocol.

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@parus, check out the research being done by Dr. Louise Oaklander at Mass General Hospital in Boston. She's finding some interesting things about fibromyalgia.

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Parus | @parus | Aug 20, 2017

Thanks for the thought. I can no longer travel and cannot afford any help. Glad someone is still doing research. By the time most of us reach 65 there is no help. Quality help is only for rich people.

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steeldove | @steeldove | Aug 20, 2017
In reply to @parus "Thanks for the thought. I can no longer travel and cannot afford any help. Glad someone..." + (show)
@parus

Thanks for the thought. I can no longer travel and cannot afford any help. Glad someone is still doing research. By the time most of us reach 65 there is no help. Quality help is only for rich people.

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@parus, are you not on Medicare? I'm just months from being 80 years old, and I'm still seeking answers and working on it. Also, check website http://www.neuropathycommons.org for doctors around the country who work with Dr. Oaklander.

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Parus | @parus | Aug 20, 2017

@steeldove A Humana Representative bumped out my Medicare ( I was on Medicare) and I am currently w/o a secondary. Most doctors in this area pooh-pooh Fibromyalgia. The meds used for this mess w/ my psyche and, of course, I am making it all up. I can get back on Medicare in October. There is a window where insurance can be changed. Humana has been doing this-never trust anyone is becoming my mantra. And, do not sign on a laptop!!!!! What next?

Yes, my humor is gone as there is nothing that helps but to try and keep busy to distract myself. Needing sleep and anyone w/ neuropathy or any kind of chronic pain understands how lack of sleep intensifies everything.

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steeldove | @steeldove | Aug 21, 2017

@parus Sorry that you've had problems with Humana, and I hope you'll be ready to jump on the change back to Medicare on the first day it's available. My small fiber neuropathy was diagnosed at Mayo last January, and I'm trying to find out if anyone at Mayo is working with Dr. Oaklander or if anyone at Mayo is doing cutting edge research on small fiber polyneuropathy. If not, I'll bite the bullet and fly to Boston...even though I moved to Missouri from Massachusetts just weeks ago!

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2 replies
Parus | @parus | Aug 21, 2017

Hope things go well for you. Mayo or flying to Boston are waaaay out of my league. As I have previously stated I can no longer travel. I have a rich sister who lives in MO.

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Darlia | @darlia | Aug 21, 2017
In reply to @steeldove "@parus Sorry that you've had problems with Humana, and I hope you'll be ready to jump..." + (show)
@steeldove

@parus Sorry that you've had problems with Humana, and I hope you'll be ready to jump on the change back to Medicare on the first day it's available. My small fiber neuropathy was diagnosed at Mayo last January, and I'm trying to find out if anyone at Mayo is working with Dr. Oaklander or if anyone at Mayo is doing cutting edge research on small fiber polyneuropathy. If not, I'll bite the bullet and fly to Boston...even though I moved to Missouri from Massachusetts just weeks ago!

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I am in the process of deciding between a referral to St. Luke's in KC and The University of Iowa hospital. I've heard and read that Iowa is very very good. I live in NE Missouri so either way it's a drive. Any recommendations out there from Mayo Connect friends on which would be best?
Many autoimmune disorders and fibro is one of them, including Peripheral Neuropathy with FGFR3 ANTIBODY.
DARLIA

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brdl | @rlinstrot | Sep 9, 2017

Do you have a link to the article you mentioned?

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