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?

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.

Healthgirl have you got any confirmed diagnosis yet that you can attach your symptoms to? Have you had EMGs or anything at all to base this idea of lack of oxygenation around? It does seem to make sense but have any doctors confirmed this and explained what can cause this bizarre and extremely unpleasant set of symptoms?

Do you have any kind of sleep apnea? I was thinking that my breathing at night seems to dip low and perhaps I should speak to my gp about getting a referral to a sleep clinic for an assessment if lack of oxygen is doing this?

Ps I was just reading up and discovered a disease called Charcot-Marie-Tooth Disease - never heard of this before and it's inherited. My late parents both suffered from weakness and both died suddenly and prematurely so ill never know now if theirs might have been similar to mine. It does seem to describe these symptoms perfectly but I think it would show up in EMG by now as I've had this for six or seven years getting progressively worse. Still the idea begins it may be similar to ours?

I think with CMT, you develop very high arch and curled hammer toes as the disease progresses, but this would probably have been noticed already in our twenties. It is not autoimmune, it's genetic. I think this is why the neurologists do the heel walk test to try to rule this out.

I am actually going to post an update right after I answer. As far as oxygenation goes, I don't mean oxygen breathed in, I am meaning oxygen necessary for mitochondrial function and cell health.
I attribute the malfunctioning breathing to that cause in the first place, which I'm sure contributes to the overall problems, but think it wouldn't be the case with out the autonomic dysfunction in the first place.
I have some kind of bizarre thing thats been happening for 3 years now where as I'm dozing off I wake up with either a harsh myoclonic jerk in a limb or my whole body and other times its with heart racing. I don't think I have obstructive sleep apnea, but I do have a problem where I wake up with a quick gasp type of involuntary in breath and then I fall back asleep or it keeps me up. My doctor said its because of my nervous system and its like a "reboot". Any way these "happenings" used to be scary, and now they are just annoying.

I forgot the name for it, but the ENT said my nose is inflamed leaving me small areas to breath through and I do notice in the early 3 am morning hours it becomes very difficult to breath so I get a poor nights sleep due to having to remember to keep my mouth open to breath. I think you said you take an allergy med, so maybe you have this problem as well?

Oh yes - I've just got that far now with my research! My arches are high but not like that nor the clubbed hammer toes etc. My neuro tested heel toe abd said there was clumsiness but not concerningly so. Still maybe some of the neuro muscular mechanisms behind it are similar - only autoimmune? I'm just not scientific enough to be able to comprehend but have to instead rely on my Sherlock blood hound instincts when I focus in on symptoms!

Haha, I'm a detective too. Wish there were some smart docs who would be willing to put their brains together and crack the case. I'm so tired. Seems they are all interested but too busy to spend more time to do any research or discuss possibilities with colleagues like doctors used to do in the old days before it became a big business.

This is so similar to what I experience nightly that it's almost a joy to read your description - awful as it is that someone else is going through such similar stuff as me. I too have these sharp intakes that wake me, severe palpitations and presently, bad SFN pain throughout my peripheries. I don't get the lightening bolt pain anymore though at least - used to hate that. I do get muscle or nerve twitching spasms in random parts of my body that can go on for hours. The other night the sole of my right foot started to vibrate and there was same twitching under the skin. It often effects a buttock or an elbow or a muscle or nerve directly above my right eye in my forehead. It's not painful but it is very disconcerting and again, it affects my sleep.

My nose is often dry and inflamed too but I do breathe through it rather than through my mouth because I'm a serious bruxist who apparently grinds away her nights. I'm on my third bespoke mouthguard in two years now. Yes I sometimes take antihistame to help me sleep and breathe through nose better. But this worsens the sicca so I try to pace it carefully and only take one a few times a week.

The neuro thinks I have mild ganglionopathy relating to Sjogrens but she doesn't seem to think the awful leaden limb fatigue is related to this or the SFN. It was my first truly weird symptom, predating the RA type pain by a year or two so I've had this limb fatigue for about seven years now - getting slowly worse. I use pillows to prop up my arms and legs but it's like carrying too heavy a burden to lift?

It's got really bad lately and my neurologist says think my Sjogrens would not explain it. Maybe it's vaso spasms from secondary Raynauds, as a previous CTD professor explained it, but I get no visible colour changes if so.

So you think it's all part of autonomic neuropathy with you and your neurologist confirms this too? Mine says there are no tests she can do to confirm ganglionopathy or my SFN (she won't repeat the skin biopsies - which were negative a few years ago) but she's prepared to go by my description alone. She says there is no other way to monitor it than to be guided by me. She is very anti medications apart from Pregabalin - which I refuse to try.

I find this lack of evidence for presumed diagnosises troubling but that's where I am at as can't afford to seek private assessments.

In this respect I'm very thankful to live in Scotland where the healthcare may be very underesourced but it is free at the point of delivery and I don't have to pay a penny for mine, apart from through my taxes. And it isn't big business here - although there's an element of this with Big Pharma of course but it's highly regulated by the Scottish Medicines Consortium - which is internationally highly regarded. I'm still so tired though - even with a formal diagnosis I can trust. So you have all my sympathy and thanks for your input / shared research X