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Does it seem like autoimmune diseases are on the rise?
Autoimmune Diseases | Last Active: Jan 11 1:26pm | Replies (54)Comment receiving replies
I hear you-I have full body tingling,fasciculations, burning-numbness and pain. Every time I try to wrap my head around this body I don’t recognize some new strange body symptoms appear. I forget what a wonderful body I had just a year ago felt like.Even my head buzzes and my legs and toes cramp. No answers from doctors except maybe-“Chronic pain syndrome”-I have no injuries or notable spine issues. The worst is that I look fine-I feel like people think it is psychological. -but you look so good they say-I stopped trying to tell them about this because they don’t understand. They are kind but say things like -It’s been a stressful time”-ugh. My doctors are receptive and I have had many tests-all normal except low IGM which is normal for me-not the average person. I appreciate these articles. Very interesting and notable. I know something is terribly wrong with my body-I’m scared one day it will reveal itself and It won’t be good. For now-the doctors only know what it isn’t. I am sure it is neuro-my body feels like it is firing off all signals like wires crossed. I feel it is autoimmune. I wish you relief -hope-and answers❤️
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I’m very sorry to hear your struggles. I’m glad that I mostly know what’s causing all my neuropathy and pain, it’s just that I’ve not found anyone to help treat it yet.
Are you seeing a neurologist? They actually seem to be aware of the effects of different autoimmune diseases. I just saw a neuromuscular neurologist who thinks my symptoms are due to damage to my spinal nerve caused by a confluence of two autoimmune diseases I have, liver disease I developed due to one of them, and an immunosuppressive medication I’m on because of the liver transplant I had last year. So, I’m having an MRI at the end of the month on my spinal column which I’m hoping might reveal some sort of treatment.
You’re completely correct in your assessment of not recognizing your on body. I hadn’t been on any medications and pretty much perfectly healthy two years ago, worked 50 hours a week, active, eating healthy, etc. I’ve read so many testimonials from people with autoimmune diseases which express this same thing. And, like you many haven’t had a diagnosis yet.
Because I wasn’t getting anywhere with the Rheumatology Dept. at one of two regional hospitals within a few hours drive, I sent an email to the head of the Rheumatology Dept. at the other regional hospital. They responded and I now have a referral to be seen by them.
So, don’t give up, believe in yourself, and know there are so many people, mostly women, who share similar pain and symptoms. Be a strong advocate for yourself. Connect is a great community of patients like us. And, I’ve found it helpful to make note of people with similar symptoms and potential treatments that have helped others, as I wait to find a provider that is willing to work with me and help me.
May you find the same! I know that there is no cure for neuropathy, but there are things that can help. And, while there are some good treatments for the better known autoimmune diseases out there, there are so many that have little or no treatment. I’ve switched my diet and I exercise as much as my body allows in an effort to at least help reduce inflammation in my body and keep it moving. Have you found anything that has been helpful? I take Gabapentin, which does little for my pain, but does help reduce the sharp nerve pains I was getting and it helps me sleep.
@johnbishop posted this video about a young woman’s journey to find an answer to what was wrong with her. If you haven’t seen it, you might find it insightful. I know I did.
https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose/up-next