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mikee
@mikee

Posts: 28
Joined: Nov 30, 2016

Fibromyalgia and autonomic peripheral neuropathy

Posted by @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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So sorry for your illnesses. I was diagnosed with fibro in 1990 and finally became disable to work in 2005. I live in chronic pain everyday and I don’t know how much longer I can do this. So sick of taking meds and pain pills! Please pray for me!

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?

@inpain55

So sorry for your illnesses. I was diagnosed with fibro in 1990 and finally became disable to work in 2005. I live in chronic pain everyday and I don’t know how much longer I can do this. So sick of taking meds and pain pills! Please pray for me!

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Hello @inpain55,

Fibromyalgia can be so debilitating; I’m sorry that you are experiencing such pain.
We have many existing and new members who talk about fibromyalgia. You may want to participate in the very active discussion about it, here: http://mayocl.in/2effi2l.

Allow me to also introduce you to @wandamiller, @blindeyepug, @persist, @rhondami, @aztec7557, @sandytoes14; I hope they will be able to provide some more information and suggestions.

@inpain55, besides medication, have you tried other alternative therapies?

@inpain55

So sorry for your illnesses. I was diagnosed with fibro in 1990 and finally became disable to work in 2005. I live in chronic pain everyday and I don’t know how much longer I can do this. So sick of taking meds and pain pills! Please pray for me!

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Hi inpain. You are not alone. I had to stop working after 30 years due to the pain and fatigue. I was diagnosed in 2008 with RA, psoriatic arthritis no fibromyalgia in 2008. It was a slow and painful end to my career. I will pray for you too. I recently went through a series of Behaviorial Cognitive Therapy and it is helping me to cope and accept my situation better. Additionally I am now starting to activate (on good or less than bad days) myself by getting out a bit more and forcing myself to socialize a bit again. Baby steps though. I hope you find relief soon.

@inpain55

So sorry for your illnesses. I was diagnosed with fibro in 1990 and finally became disable to work in 2005. I live in chronic pain everyday and I don’t know how much longer I can do this. So sick of taking meds and pain pills! Please pray for me!

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Inpain, chronic pain isn’t something to give up on yourself for. After 15 back and neck fusions, I’ve been in pain for many years. I’ve got the longest butt crack in the world. I’m on many medications.

I was a drug and alcohol abuse counselor, treatment director and inpatient and outpatient Executive Director. I am careful with all medications and use as prescribed. It’s useful to try to accept our conditions and not fight the pain. Stress makes you feel worse. Relaxing into the pain not letting it absorb you can be helpful. Do what you can each day but don’t go beyond your tolerance. Be glad for having done something.

@inpain55

So sorry for your illnesses. I was diagnosed with fibro in 1990 and finally became disable to work in 2005. I live in chronic pain everyday and I don’t know how much longer I can do this. So sick of taking meds and pain pills! Please pray for me!

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New here,

I understand, have fibro, Psoriatic arthritis, recently Lupus, and sjorgnes (sp?). Its difficult but your right, baby steps are good. Trying to do too much always hurts us worse. Its difficult saying i cant go, but im getting usef to it. I also had to stop working ini 2000. Now have it spreading to my abdomen and think my lungs so its overwhelming.

Best wishes today is a goid day for all.julie

@inpain55

So sorry for your illnesses. I was diagnosed with fibro in 1990 and finally became disable to work in 2005. I live in chronic pain everyday and I don’t know how much longer I can do this. So sick of taking meds and pain pills! Please pray for me!

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mikee and Jewel8888, yes, these are tough nuts to crack, and getting legitimate treatment is very difficult for any of them. I have Sjogrens, Sicca, peripheral neuropathy, spinal stenosis, ankyloising spondilitis, cancer in lots of places, lots of wasted effort, more surgery and chemo coming, and a bunch of other stuff. Getting a diagnosis is just awful and usually quite expensive, and in the case of amyloidosis, there is no treatment at this time on which you can depend. But there are some things which help. Stay as close as you can to someone who really loves you. Cut back of meds as much as you can. If you find a doc who you truly think is helping you, stay close. Don’t be afraid to die, and don’t be afraid to live.

@inpain55

So sorry for your illnesses. I was diagnosed with fibro in 1990 and finally became disable to work in 2005. I live in chronic pain everyday and I don’t know how much longer I can do this. So sick of taking meds and pain pills! Please pray for me!

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My late wife said I could be active 1 day if I rested 2 after. It’s a shame you picture yourself doing things the way you could before and find out you can’t move that way anymore.

@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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I don’t know about family history. My mother was a raging alcoholic and my father a stepfather. I manage pain with a variety of medications including gabapentin, Baclafen and acetaminophen. When I can get it, I prefer minimum doses of morphine. I’ve found it to be an effective medication for me. The oxys– oxycodone, oxycontn and synthetic codeine medications. Tramadol was also ineffective.

I’ve had medical marijuana to be unpredictable and expensive. By unpredictable, I mean it’s difficult to control dosage or function well efficiently on it.

I’ve developed a high tolerance for pain but have an innate high tolerance to most medications. Anytime I see a new doctor, it takes too long get him/her to recognize this to be true.

@inpain55

So sorry for your illnesses. I was diagnosed with fibro in 1990 and finally became disable to work in 2005. I live in chronic pain everyday and I don’t know how much longer I can do this. So sick of taking meds and pain pills! Please pray for me!

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Sorry you are in such pain. What I found to work for my Peripheral Neuropathy is Medical Marijuana. Not the mail-order crap with little or no actual Canabis, but the good stuff found in states where Medical Marijuana is sold. The stuff you buy off the street illegally contains varying amounts of the actual good stuff so, the effects will vary as well.

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.

@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

@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.

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.

@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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