Hot legs came back.

[SassyZee]

Three years ago I wrote about waking up with my legs on fire.

Well, it's back

Don't know what happened for it to stop for so long. But now it's back I'm back to the agonizing issue. If I leave my legs uncovered I wake up with them hurting from being Ice cold! Little own waking up to them being hot, I'm unable to sleep when this happens, or when they wake me up freezing. I'm on less medication these days. Was hoping someone might have come upon something new that might help me. Any thoughts would be much appreciated.

[Hidden]

Hi there. Do you get any colour changes with the legs on fire sensation? I get this in arms, legs and face. If your skin goes deep pink and swells then it’s called Erythomelagia (EM) and can be associated with all rheumatic diseases - similar vasospastic process to Raynaud’s and can also be primary or secondary like Raynaud’s - so in your case could be secondary to RA.

Alternatively, if no colour changes occur then it could be small fibre neuropathy (SFN). I get both but suffer much more from SFN. I also have secondary Raynaud’s

I was initially diagnosed with RA - then rediagnosed 5 years later with Sjögren’s. The rheumatologist who rediagnosed me by +ANA and lip biopsy said that SFN isn’t associated with RA unless it’s aggressive seropositive and erosive. But it’s very closely associated with Sjögren’s and sometimes also with Lupus and Scleroderma. To get SFN diagnosed the only way is by punch biopsies from affected areas.

Alternatively if could be nerve entrapment but less likely if it’s bilateral as you describe.

[SassyZee in reply to Hidden]

Hi Twitchytoes, My skin does change color when I'm hot to touch, on my feet and legs. Also my face gets hot to touch, turns beat red as well. They also get ice cold.

I have been told that I have periphal neuropathy. My RA Dr. said he believes I have lupus but unable to determin which one I have. He says I've got a immune disorder. Another Dr. dx me with polymyositis. I've had over 40 surgeries since birth. I have chronic pain symdrome. I have pinched nerves in my cervical area. I have had 2 fusions in my cervical area. Just had back surgery due to 4 ruptured disc, they put a cage around my spine as well. I have scoliosis too. I have multiple lypomas in both my legs. I read upon Erythomelagia, I believe I have that disorder cause I have everyone of the symptoms.

Thank you for responding, I'm going to make an appointement with my RA Dr.