Wow…that has got to be beyond frustrating. SS people are notorious bad sleepers but that seems extreme. Is there anything they can do to help that?
Hi EnjoyLife, so glad you have seen the doc and have a plan if it recurs. I know I am coming in late on this post, but it's been a tough couple of weeks for me and sometimes I just can't bring myself to respond.
The symptoms you described with the difficulty moving and the jerkiness in arms and legs and tremoring is what I experience every time I wake up, regardless of the time of day. I look 'spastic' and it's frightenting and disturbing. Going to the loo in the middle of the night is a challenge because sometimes my legs just won't co-operate. The jerkiness takes about 1-2 hours to improve, but can intermittently occur during the day (which is not good when I am at work), and the tremors will stay or go as they feel like it - no predicting them at all.
It's been like this for me for over 3 years now, and nobody can give me a clear explanation or help with it. It is episodic, meaning I will have times when it's almost not present for weeks on end, but it can flare up markedly and become VERY debilitating in the blink of an eye. My flare ups co-incide with other classical SS signs, so in my case (please note that) they think it is related to the Sjogrens. (They think *sigh*).
Sorry to hear you are also experiencing this tog, seems we never do get answers to everything!
Ya know….one of the blessings (I guess, LOL) to the new doc is that he took it seriously. I have an appointment with a neurologist he suggested for a work-up for parenthesis. He says we need to figure out how advanced the Sjogren's is. He says based on my self report he put on my record that regardless of the diagnosis date, he feels that I have had it for a solid 10 years. He is concerned so of course I am, but I am glad he wants to get right to it and he says there are things we can do for it. The neuro can't see me until the beginning of September but at least its on track. I'd be lying if I said I wasn't nervous but doing nothing isn't a game plan either. LOL. I'll keep you posted.
I used to wake up 3-4 times each night in panic attack mode. Not only would my extremities be asleep, but I felt as if there were some other physiological thing going on. I think, in retrospect, my body went into panic mode because of the parched mouth and dryness (remember I'm a newbie and newly diagnosed here) and it thought I couldn't breathe. In fact, sometimes I find my lips,mouth, and top of my esophagus stuck together from the dryness. I would also often wake from bizarre dreams or nightmares.
Out of all of the symptoms of Sjogren's I find this "rude awakening" to be among the most troublesome. Since I am prone to anxiety and panic, my psychiatrist prescribed a low-dose extended-release form of Xanax to take before bedtime and it seems to be helping a bit. Am also getting a EMG and nerve conduction study this week to determine the extent of my neuropathy.
Hope you speak with your rheumatologist about this and get some answers/relief from this scary episode!
WOW. You described it to a T. I don't get it that often, thankfully but once it does happen it seems that anxiety kicks in and stays high waiting for the next time. Becomes something of a cycle, I guess. Waking in the middle of a panic attack is horrifying and hard to get back under control. I have asthma too so I when it first started happening I was trying to figure out if it was related to that but it just didn't seem the same. I think you are right about the dryness getting so intense you can't breathe. That will cause one rude awakening. I'm trying to stay away from taking any more meds and supplements than I already do but the thought has crossed my mind to ask for something for the occasional anxiety.
I am sorry that you are dealing with this too but thanks for sharing. As always I feel a little calmer knowing someone else gets it.