Originally Posted by MAT52

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.

Originally Posted by Healthgirl

haha, I'm a grinder too. The antihistamines help my nostrils too, but also dry me out. The more I talk to you, the more I think the SS is probably part of my deal. I get the ridiculous twitches as well and have raynauds. Do you have orthostatic intolerance? My neurologists don't know what to really say about half of my symptoms besides that "it is all part of the neuropathy". They just add it to their notes to look like they are doing something when they dont really know what to do. I am also not on any daily meds. I did have to take 1/2 of a diazepam last night to help with my miserable muscle crap, and as much as I hate it... it saves me from horrific cycles of pain and autonomic problems that get out of control. It also helps with the burning pain. It turns out that it does something to mast cells.

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?

Originally Posted by JoannaP79

Hi Matt, like Health girl I have exactly the same as you describe. I have had awful tinnitus about the time of onset. I have abnormal heart rhythms and my stomach is getting it badly now. In addition to the heads to toe Sfn I have consistently told my neuro of this debilitating weakness when I'm sat down that is so intense it makes me feel like I'm trapped in my body and won't be able to move. Although walking about is hard work it kind of alleviates this. Lying down helps a bit. This problem has continued to worsen and frightens me immensely. It is intense and does feel like full body paralysis. I feel strong internal tremor like sensations when the weakness is at its worst. As you may have seen from my other posts, I also have noticed significant changes to my legs and hips and bum in the form of atrophy. Atrophy of what I don't know. All my tests are one back k clear, e.g, nerve conduction and MRI. I've seen the best Neuromuscular expert in the country, he heads up the Queens Square neurological centre in London. Even he has said that sometimes no explanation for these symptoms can be found. It's devastating.
The exact cause of my neurological problems are unknown. I have recently posted about CMT as I felt I had symptoms of type 2. But as I have full body autoimmune problems already I am thinking it surely has to be an autoimmune mechanism that is causing damage in the same way cmt can.
I had the schemer test yesterday and my eyes aren't dry enough. My rheumatologist is at least trying.

Originally Posted by ElaineD

Hi Mat52, and Healthgirl, and JoannaP79,

You all sound like perfect examples of my Immunologist's saying, "We use the tests we have, not the tests we need."

Once we get to the advanced stages of Immune Disorders, each of us may exhibit different problems, and probably problems that have no diagnosis at this time.

I was tested for CMT last fall, which is a genetic condition causing neuropathy. I knew I didn't have it, but it was the only genetic condition I hadn't been tested for so the specialist was so hopeful.

Doctors want to find a diagnosis that we fit into. If we don't fit, it is very difficult, for all involved.

It takes a while to understand that NOT fitting into any existing diagnosis does NOT mean that we don't have serious, painful, disabling conditions. It just means that the diagnosis doesn't exist yet, nor does the test, and sadly probably not the treatment.

However, it is possible that treatments for related conditions can be helpful. Certainly anything that alleviates pain and discomfort should be used.

I am now experiencing almost constant seizures (mild mostly), and trembling, and shaking hands, which have no diagnosis at present. Earlier I had two EEGs and one overnight sleep study with an EEG, and nothing has shown up on them.

The Medication I'm taking for the seizures is Depakote, which hasn't helped at all at my current dosage of 1250 mg/day.

To top it off I have the first UTI in over 4 years, so I'm sick. "It's always something".

Do keep us posted on this forum. Isn't it wonderful that people with highly unusual conditions/problems/symptoms can meet and share here.

Hugs, ElaineD

Originally Posted by JoannaP79

Mat, could you tell me if you are having treatment for the R.A? Is the cellcept supposed to be for all of it or just the sjogrens?
I ask as Cellcept has been mentioned for me but the neuro won't try it based on simply what I am reporting. The suggestion is I start entanercept (biologic) and for the A. S I have in the hope it manages what's attacking nerves. I'm holding off until I've made mind up about muscle biopsy. I'm too scared to have it which is why I keep going on about it in my posts! Your symptoms seem so very similar to mine bar the atrophy.

Originally Posted by JoannaP79

Hi Matt, like Health girl I have exactly the same as you describe. I have had awful tinnitus about the time of onset. I have abnormal heart rhythms and my stomach is getting it badly now. In addition to the heads to toe Sfn I have consistently told my neuro of this debilitating weakness when I'm sat down that is so intense it makes me feel like I'm trapped in my body and won't be able to move. Although walking about is hard work it kind of alleviates this. Lying down helps a bit. This problem has continued to worsen and frightens me immensely. It is intense and does feel like full body paralysis. I feel strong internal tremor like sensations when the weakness is at its worst. As you may have seen from my other posts, I also have noticed significant changes to my legs and hips and bum in the form of atrophy. Atrophy of what I don't know. All my tests are one back k clear, e.g, nerve conduction and MRI. I've seen the best Neuromuscular expert in the country, he heads up the Queens Square neurological centre in London. Even he has said that sometimes no explanation for these symptoms can be found. It's devastating.
The exact cause of my neurological problems are unknown. I have recently posted about CMT as I felt I had symptoms of type 2. But as I have full body autoimmune problems already I am thinking it surely has to be an autoimmune mechanism that is causing damage in the same way cmt can.
I had the schemer test yesterday and my eyes aren't dry enough. My rheumatologist is at least trying.

Originally Posted by MAT52

I didn't qualify in the Schirmers test either - nor on the salivary one. This was a year and half ago when I was still on steroids though.

I've been reliably told by optometrists that this Schirmers is now thought primitive and redundant by eye doctors because many with dry eyes will produce some tears just because of the sheer discomfort. Certainly my rheumy team and my neuro aren't interested in how dry my eyes are now that my ANA has swung positive, immunoglobulins raised, inflammatory markers high and very positive lip biopsy. They tell me that I have a systemic connective tissue disease that they believe is primary Sjogrens.

Sometimes my eyes are very dry and I only score very badly in the tear break up and Rose Bengal tests for eye dryness but they never ask for proof from opticians or send me to eye doctors - they are happy to be led by my account of state of eyes and lip biopsy result alone I think.

I would not let them rely on Schirmers alone to rule Sjogrens out now. I know some with SS have only mildly dry eyes but severe neuropathy that can present like MS. I'm in Scotland and this is the fourth but by far the best Scottish hospital I've attended. Hope this helps.

By the way has anyone told you that you probably have ME or Fibromyalgia yet I wonder? When I have asked about these symptoms on other forums I'm often told that this is what others get diagnosed with when describing the limb weakness? I wonder if this is doctors being lazy and refusing to acknowledge an immune mediated SFN even when it's staring them in the face?!

Originally Posted by MAT52

I didn't qualify in the Schirmers test either - nor on the salivary one. This was a year and half ago when I was still on steroids though.

I've been reliably told by optometrists that this Schirmers is now thought primitive and redundant by eye doctors because many with dry eyes will produce some tears just because of the sheer discomfort. Certainly my rheumy team and my neuro aren't interested in how dry my eyes are now that my ANA has swung positive, immunoglobulins raised, inflammatory markers high and very positive lip biopsy. They tell me that I have a systemic connective tissue disease that they believe is primary Sjogrens.

Sometimes my eyes are very dry and I only score very badly in the tear break up and Rose Bengal tests for eye dryness but they never ask for proof from opticians or send me to eye doctors - they are happy to be led by my account of state of eyes and lip biopsy result alone I think.

I would not let them rely on Schirmers alone to rule Sjogrens out now. I know some with SS have only mildly dry eyes but severe neuropathy that can present like MS. I'm in Scotland and this is the fourth but by far the best Scottish hospital I've attended. Hope this helps.

By the way has anyone told you that you probably have ME or Fibromyalgia yet I wonder? When I have asked about these symptoms on other forums I'm often told that this is what others get diagnosed with when describing the limb weakness? I wonder if this is doctors being lazy and refusing to acknowledge an immune mediated SFN even when it's staring them in the face?!