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Originally Posted by MAT52
Hello - I haven't been here for a while as so much has been going on and I'm now a month into another immunesuppressant med for my Sjogrens - Mycophenolate Mofetil/ Cellcept. So far I've had no adverse side effects but not much improvement either. As anyone who knows me too fron the Sjogrens World forums will know - this is only for a trial period of five months. I can't tolerate the Gabapentin family and am told if this doesn't work I'll not be offered anything more unless my organs become involved. My neurologist is very against drugs for me full stop and they all defer to her so it's a miracle I've been able to capitalise on lack of multidisciplinary togetherness in order to get to try a last disease modifying drug.
In addition to the usual SFN everywhere (currently flaring post Christmas/ New Year period) and disequillibrium, I also suffer fro a very high pitched tinnitus and dismotility plus severe GERD and palpitations.
All this I deal with in an ad hoc way and sometimes things do really work. Zantac/ Ranitidine taken regularly in place of PPIs has given me great relief recently for example. Keeping busy, resting, drinking a lot of water and avoiding unhealthy food and all alcohol has helped - as does making myself walk the dogs daily and keeping eyes moist.
But the one thing that I cannot get a handle on is the crushing weakness in my limbs while resting. I end up lying awake feeling like a prisoner in chains. It seems to be the opposite of RLS where I feel unable to move about at all, can barely lift the duvet or move my pillows for weakness/ leaden-limbs. My wrists and ankles plus calves are particularly pathetic and this induces a kind of panic in me because I then feel trapped. Once I break the spell and make myself move it improves - but then the sense of turning to stone starts up again as soon as I'm still and it's worsening all the time. I get very little quality sleep now because of it.
I had nerve conduction studies with EMG recently but nothing showed up at all. In fact my nerve and muscle responses were very healthy indeed I was told. So what on earth is this weakness about can anyone explain? When I do wake there's a feeling of tingle and warm glow all around my upper body and my finger tips seem to give off electric shocks. My doctors are mystified and I'm exhausted by this longstanding and steadily worsening symptom. Anyone else have this or know what it might be?
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I get this as well. The weight of my own body when I wake up causes so much pain from the pressure on my skin and deep through to my muscles and bones. I feel so weak and hurt so much like one would it they did 2 days of extreme fitness bootcamp, slept on a cold flat rock, and then caught the flu. The weakness is amazing. My arms and hands are so weak that I can't hold my cell phone above me to check emails. I try to shift into different positions but it's all awful so I wind up getting up to get through the horrible pain of moving to achieve the ability to function and get the little one ready for school. I have to be up and down constantly all day. Can't stand long, use my arms long, or be in any one position for more than 10-15 min. I feel that this is due to such poor oxygenation of the muscles and nerves. I also get the tingle and warmth in different areas of my body at times, more at night though. I get random shocks all over, but the ones in my hand happen almost anytime I try to hold my fingers straight.