Quote:
Originally Posted by en bloc
Sounds as if the icy/wet feeling was there before (or all along) since you say 'still'. This would be a clear sign that your nerves are not dead...as these are those very same small fiber nerves. So this is a good sign!!
Those with autoimmune SFN experience changes in sensations like this...sometimes lasting days/weeks, or sometimes even longer, like months. It is actually quite normal. The first couple years of SFN, we think things are improving or getting worse with these changes...only to find out after dealing with this for years, that you will flare on/off here & there (because the Sjogren's flares). I have had numerous times where the icy/wet feeling stops (for no reason), then reappears a month or two later. I do find pain changes occur when seasons/temperatures change. The Cellcept certainly may be responsible for the changes in inflammation, and this may be the cause of your increased pain, yet decrease in the disequillibrium. Time will tell. Hopefully, you will have lasting benefit from the lack of disequillibrium!! If the pain flare continues to get worse, then you should contact your doctor/neuro.
I am thrilled that your disequillibrium has greatly improved!! Excellent news!
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Thanks so much Enbloc for reassuring me that I'm on the right track. Yes wet legs are longstanding symptom - it's my toes and finger tips that I think have lost some sensation permanently in because they turn bright white/yellow along with my soles when they come into contact with warmth. And they are very cold all the time.
However I think I'm having a Sjögren's flare rather than just an SFN flare as I am getting a surge in facial twitching - mainly in eyebrows and around both eyes - which I usually only get occasionally when tired but not including eyebrows too and not all the time. This is just whenever I blink - and I know from opthamologist that my eyes are completely tearless presently but I keep forgetting to use drops every 30 minutes - it's such a faff!
I also have Meibonian Gland Disorder so am using warm eye pads and massage daily at his instruction. The result seems to be these frequent facial spasms and feeling tired beyond even my norm. Plus constant tinnitus of course. Which I'm taking to be a Sjögren's flare. Does this sound about right?
I know that the SFN will come and go but the main difference is that it doesn't make my skin burn in my feet or hands much anymore - they just feel icy cold and numb-ish all the time. I get strange twitching in toes sometimes too. Lots of odd symptoms come and go all the time really - constants are the icy feet and legs with pain and wetness in my knees and thighs and the fatigue in my arms. Plus horrible burning pain in gums and teeth.
So I maybe am just projecting more positivity onto Cellcept than it deserves just because it's a drug I'm tolerating so well. And the power of the mind is great re placebo effect. But also I have my first prescription shades which I'm just getting used to so am stumbling about with this and maybe not as aware of the disequillibrium for this reason too. We are moving permanently in 6 weeks so a lot more packing up to do for the fourth (and hopefully final time for a long while) in time in a year! X