Wanted to respond, as last night just started with the intense itching, so Googled to see if it can be related to fibro; sure enough! I wanted to comment on the saddle numbness. All of these conditions are interrelated, I believe. I have been diagnosed with CFS, fibro, dysautonomia, neuropathy, but it is so confusing as to what condition causes what. It has to be that there is one central cause of all; no one can be so unlucky as to have developed all these conditions. I think that's why people/doctors don't believe us - - I had one doctor diagnosis me with depression years ago, as he said "no one could have that many conditions or problems." As others have said, hopefully research will someday bear this out for the sake of future generations. I get such severe pain in the pelvic/rectal area that is scary. Sometimes it feels like it could be appendicitis or something internal.

My question is, does anyone wake up with severe internal shaking/vibration? I have just started developing this in the last couple years, but it is progressing and getting worse. I am assuming it is neuropathy or possibly small fiber neuropathy, as it goes along with paresthesias/burning. I think it may be important if you are experiencing numbness/tingling sensations anywhere, such as the saddle area, to be evaluated by your doctor for neuropathy. Goes back to the never-ending question of whether it is all part of fibro or not. I was diagnosed with polyneuropathy on testing. There are, unfortunately, also many pelvic pain syndromes that may be going on concurrent with your fibro, and there is, of course, the theory that small fiber neuropathy and autonomic neuropathy (dysautonomia) goes hand-in-hand with fibromyalgia. Praying for all trying to live and keep going with these life-altering conditions.

Hello. (I love your name "autonomicnellie!). I assume you have a dysautonomia or autonomic neuropathy diagnosis? I know exactly what you are saying. I find whenever I have a stressor (i.e. trying to go out, a virus, lack of sleep, increase in fibro pain, stomach issues, it will cause a flare and an increase in this terrible burning. Usually I just ride it out, as I prefer not to be on medication due to having an additional vestibular (chronic dizziness) condition, which is made worse by any medication that can have dizziness as a side effect. (Dizziness is too, unfortunately a part of fibro for some). I would definitely talk to your doctor(s). Again, the question is what diagnosis is causing what versus all part of the same syndrome? Don't know what medications you are on specifically for your dysautonomia and fibromyalgia, but if the burning/numbness are related to neuropathy, perhaps a medication like gabapentin may help. It is a seizure medication, but is also used for neuropathy and nerve issues in some cases, I believe. Wishing you better daysl I know how painful and uncomfortable it is.

When I am in a flare, I have burning on my face, hands and legs. Nothing seems to help. Do you have any ideas what I could do to stop them?

Oh my it seems like every time I have symptoms, only thing is diagnosed as fibro…. I too have the tingling and itching all over. Take allergy meds to try and help with itching. Praying we can all find relief from this mysterious diagnosis.

Thank you so much for your understanding and all the info you provided was so helpful. I haven't heard of a lot of the conditions you name and I wonder if thats going on for me.
I have heard the internal shaking vibrating before on this forum. I have vibrating limbs but not inside my torso but I have heard people talking about it and finding it scary.