Author Topic: Twitching all over body, is this Sjogren's???  (Read 200 times)

Deseree

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Twitching all over body, is this Sjogren's???
« on: December 03, 2018, 10:40:50 PM »
Hi guys, for the last week I have had this terrible twitching all over my body. The twitches are visible through my clothing, and look like a vibration under the skin. Sometimes they go in the same spot for about 10 seconds and then move to another completely different spot, and this happens all day off and on. I made the mistake of looking this up and it says twitching like this can be the first sign of ALS, and I am freaked. I mean, what would be the chances of me getting Sjogren's and that at the same time? Regardless, I went and tried to console myself by testing my reflexes according to a diagnostic criteria for ALS, and scared myself even more when my reflexes were hyperactive and I showed a positive jaw jerk and Hoffman's sign (common ALS relfex tests that are positive in people with the condition).

Now, since my diagnosis, I have been having terrible anxiety. I talked to my doctor today and she is sending me to see a neurologist, but the wait is very long. Meanwhile I was given some Lexapro and Ativan (anti anxiety meds) to help calm me down, but I am spiraling out of control.

Can people with Sjogren's have hyperexciteable reflexes? What about these scary muscle twitches?

Thanks everyone, I'm really in a panic now scared that I have something even worse than Sjogren's.
30 year old female. Positive ANA and RF. Negative Ss-A/Ss-B. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

irish

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Re: Twitching all over body, is this Sjogren's???
« Reply #1 on: December 03, 2018, 11:02:21 PM »
I would suggest that you see a neurologist I order to be assessed for any neuropathy. It is very common to have anxiety and depression with autoimmune diseases and any chronic disease. However, it is really easy to blame all of our symptoms on anxiety at one time or another.

I would not be googling and trying to figure out what is going on with your body cause you will drive yourself crazy. Most of us have gone this route in the early years of our Sjogrens and soon learn that the stress just makes us worse. It is better to keep track of your symptoms and get assessed by a specialist.

If you have started on your antidepressant and anxiety med it will be interesting to see how you do. I would not rule out seeing neurologist eventually if you continue having these type symptoms. Don't worry until you find out if you have something to worry about. Good luck and keep us updated as some of us might have the same issue and info would be beneficial. Thanks. Irish

SjoGirl

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Re: Twitching all over body, is this Sjogren's???
« Reply #2 on: December 04, 2018, 01:15:47 PM »
So, please I know, really I do, how hard this is, I invite you to take some deep breaths. The fear and chest breathing can serve to help things cascade out of control (believe me, been there, done that).

Twitching can be for many reasons. I  had a lot of it at first and learned that it was muscle spasms. So was it from SjS? Maybe but maybe not, going to PT and taking meds to stop the spasms helped. Twitching, if at night, could be a form of nocturnal "seizure" which is more common than we might like to think and in some cases is innocuous -- might have a reason or no reason. FYI sometimes a neurologist can find a reason for seizures sometimes they can't. I agree with Irish find a good neurologist, even if the wait is long that is the person who needs to assess you.

Are you having any other symptoms, e.g., headaches, seeing auras, etc.? Have you checked your medication side effects list and gone through the whole list. I always read the unlikely to happen part of the list because I am usually in the 5-10% that experience the rare side effects. In fact, I am on a medication vacation from one drug because about every six months I start to twitch like crazy at night when I'm on it. I usually go off for a couple of weeks or a month then end up back on it. As Lady Gaga would say "it's just the way God made me."
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

happylife

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Re: Twitching all over body, is this Sjogren's???
« Reply #3 on: December 05, 2018, 05:26:56 AM »
One month after my dry eyes and face pain started, i had twitching sensation in my fingers, upper left back abdomen. This would happen for 10 to 40 seconds. This would happen many times a day. These twitching were clearly visible. This happened for about 3 months. Then it stopped.

So i guess this must be related to Sjogren, because never before in my life did i experience twitching.

Tharrell

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Re: Twitching all over body, is this Sjogren's???
« Reply #4 on: December 06, 2018, 05:15:02 PM »
Hi Deseree. Your rheumatologist did the right thing to send you to a neurologist. Hopefully it is a neurologist familiar with neuromuscular disorders. Your symptoms sound like benign fasciculation syndrome. https://www.medicalnewstoday.com/articles/320388.php
It causes these twitches all over your body, but are really benign, albeit very annoying. I have the more severe form called Isaac’s syndrome. I not only have the constant twitches and fasciculations, but I also have constant crampings all over my body. It is not a dangerous condition. It is a treatable condition. Your neurologist may send you for an emg study to see what your nerves are doing and she may want to run a blood test on anti voltage gated potassium channel or calcium channel.
My symptoms are currently fully controlled by medication, although like everything else took some trial and error to find the right one.
Hopefully this was helpful to you.
MCTD, sjogren's,sero negative ra,achalasia,Issac's syndrome,MCI, nystagmus, acephalgic migraines,raynauds, plaquenil, requip, B2,spiriva,albuterol,topiramate,synthroid,diazepam,linzess, cevimeline,orencia,arava,prednisone,folic acid

MAT51

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Re: Twitching all over body, is this Sjogren's???
« Reply #5 on: December 08, 2018, 11:47:52 AM »
Hi there. I too have this problem but I put it down to my SS fatigue which is, frankly, terrible. I feel that it worsens of bothers me much more when I’m extra fatigued - from head to toe. I also have shakes and tremors which my nice new neurologist (they are a functionalist breed - I swear they collectively have conversion disorders which they project into us ;) ) calls functional overlay. This just means they are benign rather than part of a neurological disease eg ALS/ MS, MND or PD. If you have Sjögren’s then for some of us it imitates MS very well indeed.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

jazzlover

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Re: Twitching all over body, is this Sjogren's???
« Reply #6 on: December 10, 2018, 03:50:29 PM »
Make sure you are getting enough magnesium into your body. Have you been tested for Lyme disease? Any chance you could have it?
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

MAT51

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Re: Twitching all over body, is this Sjogren's???
« Reply #7 on: December 10, 2018, 03:55:11 PM »
Thanks but magnesium actually makes me quite unwell I’ve discovered - I bloat and it gives me awful flatulence! I had a lumbar puncture a few years ago and Lyme was negative.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!