A theory to try on autoimmuners with SFN - Awakenings?
 

Hi All. I've got a theory and want to try it out here. I'm on my tenth week of Cellcept for Sjogren's - for mainly a neurological presentation - although I have all the classic Sjogrens symptoms too.

A few weeks ago I had a bad pain flare up in my legs and arms each night while resting. Meanwhile my Raynauds-type symptoms have worsened - but I am in Scotland where it's been cold and am warming up from horrible all over chills by having hot baths of an afternoon so toes and soles turn bright white when they touch warm water. I'm increasingly confident that this is because of the SFN rather than Raynauds - same for shiny skin on soles and hands plus funny little red spider veins on palms, finger tips nail beds and face. Oh and my prune finger tips too - all more pronounced when SFN is flaring.

So my theory is that, by suppressing my overactive immune system, the Cellcept is waking up my dormant small nerve fibres and reducing the inflammation in my blood vessels too. And perhaps this is responsible for surge in glove/ stocking pain and surge in facial tingle and BMS?

My neurologist says numbness is a "negative symptom" - meaning irreversible damage. And she says this is what has been causing my disequillibrium over the past few years, along with some mild autonomic issues. I don't doubt that she's right. My rheumatologist says that the SFN of Sjogrens is generally self limiting - and in my case I was thinking this must be right because the burning pain and electric shock pain had gone and has been replaced mostly by an icy tingle/ crawling.

But here's the thing - my disequillibrium is much better just now and I've been able to abandon my cane and am less apt to clutch at railings or family members and no longer feel so off kilter. Same thing happened when I was on steroids. And yet legs are still icy and wet feeling and pain is also in the ascent - especially after hot baths or showers and during the early hours when it wakes me like a grand toothache in feet, ankles, shins, knees and same for arms too. I also have heavy duty spasm in one eyebrow whenever I blink - a new location for a longstanding symptom (i.e. twitching eyes).

So could this flare perhaps be BECAUSE the Cellcept is working in the way I'm suggesting, or am I just clutching at straws here?

I can't address your post in detail, but I would like to suggest one thing for you to try.

Avoid heat in the form of hot baths, hot tubs, heating pads, saunas, etc. I learned this from a very interesting chiro, who explained to me how damaged nerves are inflamed by heat. If there is inflammation present in other tissues, it will accelerate with heat application.

I know it sounds difficult if you are chilled, but wrapping yourself up in a warm blanket is much better as your own body heat will warm you. It just takes a few minutes longer.

A warm drink (not hot) will also help internally. New studies suggest very hot foods/drink can lead to esophageal cancer, so only warm drinks are best.

Warm baths are allowable but limit them to 15 minutes or so.

One can get into a very painful spiral if using heat too much. So give limiting and avoiding heat for a while and see what happens.

Thanks very much Mrs D. I know you are right and I make sure never to have a hot bath or shower before bed time. I generally have my baths mid to late afternoon (I'm self employed) and the SFN is usually only bothersome at night. But maybe even this is a trigger for attacks later on. Certainly when I had symptoms of RA for a few years I found that the hot water bottles etc that I craved would trigger horrific flares of inflammatory arthritis. This would certainly seem to tie in with what your chiro explained.

I think the really bad nights are after the fire has been lit or the heating has been on and I dry out too much. If I can sleep with window open and extra bed clothes then I sleep better but where I live is very windy so that's not always an option. I feel the cold so badly these days - even wrapped up with toasty bed socks and a duvet and lots of clothes on - it's like it's got into my bones and nerves and only a hot bath will get me warm again. Swings and roundabouts! I often make hot drinks but rarely get around to drinking them while they are hot!

I will be extra vigilant now as my oesophogus is very troublesome too these days.

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!

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

I find, for those of us with a multitude of problems, often taking several medications, that it is very difficult to sort out what is happening at any given moment.

When I developed uncontrolled jerking in my left arm, and infrequent complete collapses to the floor (scary!) I went to my most recent medication and found that some of those symptoms (the jerking primarily) occurred in 4% of those taking that medication (Gabapentin).

So I decided to wean myself off the Gabapentin to see if it was causing my jerking movements. It was a terrible process, akin to withdrawal from benzodiazepines or alcohol, I read. I finally achieved withdrawal, only to be in horrible pain from my small fiber neuropathy.

However, eventually I found that the jerking and falling did NOT stop, and I went back on the Gabapentin. And I have my life back.

Now I am trying to put my head between my knees before I stand, since it is possible that my falling and jerking is related to interrupted blood flow within my brain (My carotids are fine, checked recently). The jerking isn't a big deal, but the complete collapse to the floor is a horror show.

I saw an epilepsy specialist and he has ruled out epilepsy, tho' I'm not completely sure he's right.

My point here is that we do a LOT of trial and error, and we must keep a daily log of our experiences, medications, sleep patterns, etc. And we must be patient since we are dealing with a data set of ONE (ourselves) and that means it is very hard to know exactly what is going on at any point in time.

My toes turn white in hot water, too, but I don't have the problem in my hands.
My feet are mostly purple, due to poor circulation from the nerve damage which decreases blood flow. my lower legs are atrophied due to the neuropathy.

And yet we continue, with a certain amount of hope mixed with realism.

Hugs, elained

How long have you been on the cellcept. It's so hard to know with this disease if it is stabilizing, healing, or morphing into something else. Also hard to know with out giving it time whether supplements or meds are helping or not.

So sorry I never replied to this. My e-Alerts seem to have been lost in the ether. I will update about the Cellcept, neurology and rheumatology input very soon. Still struggling with flare, drug reactions and painful fingertips! X