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440728 tn?1234648902

Sjogren's: tingling, muscle twitching, does anyone get it?

Hi, I was diagnosed with Sjogren's last month after 2 years of horror not knowing what was wrong. I have all the usual symptoms of dry painful eyes and mouth, painful salivary glands and drying up inside my throat, chest and stomach, which gives me a permanent dry cough and nausea. I just want to ask does anyone out there get a sort of trembling in your muscles, and tingling and twitching, even electric shock feelings under the skin, as if they're pulling themselves uptight but can't stop it. Also as if you skin is on fire and burning and itching? It comes on so strong sometimes I feel as if I could burst and it makes me so anxious. The docs have said before I was diagnosed with Sjogren's that this was stress, but I just don't think so, I am stressed because it took them a long time to diagnose me, but these things are a very physical sensations. I feel they are part of Sjogren's. I would be grateful for any help here. Thank you very much.
28 Responses
Avatar universal
Hi...Sorry you have been feeling so ill.  I too have Sjogren's, but also have overlapping connective tissue disease.  In the past I had many if your symptoms.

The electric shocks can be from a number of causes and you should have a doctor look into that if you have not already done so.  What types of doctors have you been to see?   (rheumatologist? neurologist?)  What types of tests were run to determine your diagnosis?

Are you taking any medications for Sjogrens'?  I have had great success taking Prednisone and Plaquenil.  

Do you get enough sleep?  Sleep problems tend to go hand in hand with autoimmune diseases.  Neurological disturbances can stem from disease or as a side effect from sleep deprivation.  Just throwing that out there as a consideration.  I am an advocate of sleep medication if insomnia is a severe problem.

Sorry for so many questions.  I hope you can get some resolve and start feeling better soon.  It is possible to feel well, but it seems to take forever.

Wanna :o)
Avatar universal
Hi
I was diagnosed about 3 years ago with sjogren's and started on plaquenil which really didn't help me much. I had the burning sensations and very sharpe pains in ligaments and joints that could be fleeting or last days. After about 1 year on methotrexate(MTX) both the arthritic symptoms and the others became much less frequent. It took most of a year because my wbc count kept dropping too low to take MTX, now my body seems to accept it and I have more energy and a better quality of life. I'm still on Plaquenil as well as the MTX. Good luck
Dinahsaw
440728 tn?1234648902
Thanks to everyone for your help. I am under a Rheumatologist. I am due to try steroids this week but I am terrified of them making my anxiety worse. Does anyone know if steroids make you feel more anxious or do they calm you? I actually only get anxious as the Sjogren's symptoms flare up, I don't know why but as soon as I start to feel like I'm drying up from inside out if you know what I mean, it makes me feel so raw and agitated and that's when I get anxiety that seems to go with it. Does anyone experience this too? Also I have 2 weddings coming up, are you allowed to drink on them? I'm not drink reliant, but it does help me to relax sometimes.
Avatar universal
Ooooh, you got that rt--yes, the dryness ALL over one's body is the pits...NOTE: the chapstick, carrying water around, aloe/shea butter lotions on hands, feet arms legs & a good facial  moisturizer or 'potion'...try lots of yogurt with the good pribiotics--so not to have pits of thrush--the coated tongue...& DO watch teeth---gum disease is easy to set in with the dry ness...so floss also. MAINLY, keep hydrated...
Ok--Predisone is def a helper in small pill doses...at least for me and the gabertin (that was for the take over of Tegretol originally) is a generic pain reliever that helps with the hot spots, twitches & nervy jerks & spatzy ways of the random klutiziness and sporadic antsiness & more stressful involvement when ya totally have weird like tic's almost. My wrists are so strange & hands are not able to the 'basics' anymore like even in KP duties...I can put things in a box or tray, but am too scared to carry grocery bags out of a market run...weakness out of the blue.I watch when I decide to drive...scared that my hands will not work right & I will be guilty for an accident so I so do think out a 'simple trip' now that I have known I am NOT JUST CRAZY or imagining---you have to feel comfortable & it is scary...when no one understands & you just want to be watchful for yourself & OTHERS as well. Good luck...we need to share these tidbits--goodness, for each others saneness!!!!  :-)
Avatar universal
Great majority of autoimmune diseases started in USA in 1985 with introduction of GMO foods.Best description would be mystery illness.There are probably close to 120  describing symptoms Every community on this web site has some GMO exposure.Good news is that soon or later, people will demand that presence of GMO ingredients has to be declared on the label.Consume only organic food grown by farmers you know personally.Watch Dr.Jeffrey Smith video on subject or move to Austria or Italy.
422425 tn?1307996590
I was just diagnosed with Sjogren's as a secondary disease.  I had burning sensations in my hands and feet, and the Rheumy had me take B12 injections once a week for a while.  It helped greatly.

I am on 20mg of prednisone right now, and also Plaquinel.  Steriods can cause moods swings, but so far I am ok. I think if you start to feel better, it will help with the anxiety issue. I know when I started to feel better it really helped my mood, plus getting enough sleep helps as well. The dryness is a pain isn't it? Lots of water, lost of eye drops, lots of trips to the dentist. Those little lemon head candies are great in a pinch for dry mouth in small doses.  I also use biotene mouthwash and toothpaste.  They seem to be working as well.

I hope this helps you, and you start on the road to recovery very soon!
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