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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyFibroTeam Member asked a question 💭
Marietta, GA

Hi there. I am wondering if there are others on this panel who get strange sensations with their fibro? My Rheumatologist looked puzzled when I tried to describe them. I have been to many doctors and nothing can be found. They were much worse 2 months ago and are starting to ease up tremendously but they still concern me and I feel like I walk around holding my breath that they will come back with a vengeance any day so most days I'm even afraid to talk about them in fear of jinxing myself.

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April 4, 2018
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Answer Summary

Members deeply connected over strange neurological sensations in fibromyalgia that doctors struggle to explain, most commonly describing them... Read more

Members deeply connected over strange neurological sensations in fibromyalgia that doctors struggle to explain, most commonly describing them as buzzing, humming, or electric-like feelings in hands and feet that make them want to crawl out of their skin, often accompanied by muscle twitching, widespread pain, and extreme fatigue. Several members shared that steroids like methylprednisone provided temporary relief, anti-anxiety medications like Ativan or Klonopin helped reduce sensations, and supplements including magnesium, B vitamins, L-theanine, and fish oil offered some support, though many emphasized the frustration of doctors dismissing symptoms or refusing helpful medications. A recurring theme was the emotional toll of feeling alone and misunderstood, the fear of underlying autoimmune diseases that standard tests miss, the cycle of anxiety worsening physical symptoms, and the need to meticulously plan daily activities around unpredictable flares while mourning their former energetic selves.

A MyFibroTeam Member

HA! The odd sensations, I will speak from experience and someone with cardiovascular issues. I won't assume either since I am not a doctor, But for me...I had a ton of these in spurts, then they move to migraines behind right eye, Then balance issues, The pop behind the knee. I also have afib. The extremities are usually tingling due to blood flow and beta blockers. So I have worked around it with fish oil, COQ10, Folic acid and chlorophyll. Oxygenating the blood as the oil fights off plaque. Made sense to me? And it works. I am not a doctor but that's the experience. Also most of my pains are because I focus on them (anxious) anxiety, ptsd, whatever you want to call it. But thats natural when you are dealing with fibro. No one knows what your dealing with and you want to know, That creates a whole world of weirdness. You know it's love when someone tells you repeatedly, You know it's pain because you feel it. But without a strict diagnosis our minds tend to wander in to the unknown worst case scenarios, But try some meditation, back rubs, relaxing time for you, epsom salts, and try the fish oil and chlorophyll it really helps me and my family.

April 5, 2018
A MyFibroTeam Member

This is why sometimes I question whether it’s fibro or an autoimmune disease that’s just being super stealth. I guess I just don’t understand why most doctors associate fibro with muscular pain but there seems to be waaaay more symptoms than just muscular pain. Fibro almost seems to be like serious nerve sensitivity to almost everything. I still think fibro is an autoimmune disease and we just dont have antiantibodies for it.

April 4, 2018
A MyFibroTeam Member

Well, you look great in them. Very movie-starrish. I just look like a nerd on drugs ;-) Thank God I have an understanding hubby!

April 9, 2018
A MyFibroTeam Member

I think fibro changes our perceptions and senses. Since fibro, I have had super sensitive eyes and ears. Or I should say, I feel like I do. I can't stand discordant music and strobe lights make me nauseous. My husband likes for us to attend some rock concerts and I wear my darkest sunglasses once seated. I don't care how goofy I look.

April 8, 2018
A MyFibroTeam Member

Fibro doesn't meet the field definition of an autoimmune disease b/c it doesn't result in auto-antibodies or "harm surrounding tissues." (https://www.healthline.com/health/is-fibromyalg...). It does seem that many fibro patients have 1) either lower back or upper neck injuries prior to fibro onset 2) have herpes simplex 3) have had mono/Epstein Barr 4) have hypo-thyroidism or Hashimoto's 5) previous to fibro, have experienced a period of extremely high stress emotionally, or physical trauma such as an accident, or both. Apart from that, some people experience IBS, some do not. Some have odd sensations and sensitivities, some do not. Very mysterious animal indeed.

April 4, 2018

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