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

[Rite760]

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.

[Want to feel well!!!]

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)

[dinahsaw]

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

[Rite760]

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.

[JackHall]

I went on high dose steroids (Prednisolone) to suppress a soaring IgG4 level in blood and it made me feel and look ‘good’.   Unfortunately, the tapered dose reduction took about 18 months to get off and onto the Azathioprine replacement.  The side effect is literally thin skin.

[dorr77]

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!!!!  :-)

[soldy]

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.

[cudagirl]

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!

[krndhn]

I  have those same symptoms and have Sjogrens as well as connective tissue disease ... you're not alone!  The tingllng was the thing that took me to the rheumy the first time.  And the feeling of the muscles drawing up suddenly... also the twitching and spasms in my legs.... they just start  shaking real fast and I can't stop them.  I have RLS and thought maybe the twichting and restlessness was from that, but who knows??  I give up trying to figure out which symptoms are coming from which disease!!  All I do is deal  with it, try to laugh about it, and keep remembering it could be so much worse.

Keep  smiling!!      ~ Karen ~

[Rite760]

Thank you so much to you all for helping me. I am knew to this forum although I have been with the thyroid forum for a year and they are fab too. I was getting really scared coz this new added sjogren's on top  of everything else had finished me off. I am so glad that I now know other people get these sensations too. But one last thing, I end up taking Diazepam too calm the muscle twitching contraction thing and burning as if I'm gonna burst. Does anyone know of any other drug that can give the same relief as I hate taking the Diazepam. And once again thanks so much for all your kindness.

[ohanamama]

I've read all of your comments and responses, and I'm surprised that none of you take EVOXAC - a medication meant specifically for Sjogrens.  I have Lupus, Sjogrens, Raynauds, Fibromyalgia and who knows what else and I only very rarely take Prednisone.  I avoid it at all costs.  With Evoxac and Plaquenil as disease modifying drugs, several psych drugs for a severe mood disorder, multiple OTC vitamins and minerals and a serious pain med - I'm covered!  Please, try Evoxac and the extensive OTC line of Biotene dry mouth products and your life will never be the same.  And get off the Prednisone ASAP.  Your bones and major organs will thank you.

[OldFatChick]

I take Evoxac. I call them spit pills. I am fortunate that insurance pays all but $20. Apparently they are in the $500 range if no insurance. My old insurance wasn't as good, I used to pay $200 a month for them.

[lostgirl13]

Hello to all of you...I am new to this website and hoping to get some help or advice to manage and cope with sjogrens. I have been sick for the past 31/2 month and not one dr could figure out what was wrong with me, first i was diagnosed with thrush, i have lost 30lbs in less than 3 month, and been in and out of the hospital for dehydration. this all started when i was having trouble swallowing my food (it felt as if it would get stuck in my thoart), and then my mouth got extremely dry and it was even hard for me to swallow water, my tounge was covered in white stuff and i was producing foamy thick salvia in my mouth ( which i still have alot of), i am always having to spit in a towel, and i feel like this mucus stuff is just sitting in my thoart. i was treated for thrush,i also had an endocopy where they found gastritis and a hiatal hernia ( currenty i am on prevacid for that). My primary was so concerned that i am still losing weight and still having trouble swallowing so just this week he referred me to a rhumatoligist who suspects i have all the symptoms pointing to sjogrens syndrome, my ANA work up should come back this coming week. i am so tired of dealing with this and so lost. My mornings are my worst my mouth feels as if all these cotton balls are sitting in there, my tounge gets stuck to the roof of my mouth and my tounge feels like a cats tounge. And wow how that icky thick white foamy stuff comes out in the morning so much worst. I try so hard to swallow and realize that my thoart is even dry... I get up and try to brush my teeth and gargle with baking soda (but not much relief at all). the rhumatoligist just put me on EVOAXC, I have been on it for 2 days but i really don't see that its working, although the pharmasits says it take a few days to a week for some people before the med will start to work. Those of you taking EVOAXC or that have ever taken it, how long should it take before i see any changes and what should i notice, how will my saliva be? Is there any other advice that anyone can give me. My muscles or joints are not something bothering me its just the dry mouth and swallowing problem.

[ohanamama]

First off, best of luck to you in the quest for comfort.  It is never easy, or quick, to find relief when you have an autoimmune disease.  Listen to your body, don't give up the fight and be sure you get the care you deserve.

I started on Evoxac so long ago, I don't recall how long it takes for the benefits to kick in.  I take four pills of Evoxac a day.  The first of the day goes along with vitamin E (all of my other meds for the morning) and a huge glass of water.  By day's end, I've had about a quart (48 oz) of water.  I learned that too much water can cause low blood pressure, dizziness and loads of trouble.  So if the 48 oz. isn't enough, add Gatorade.  Don't forget Biotene mouthwash and toothpaste.  They can help until the Evoxac kicks in.

One other area all autoimmune patients should have checked is their DHEA level.  It's a blood test.  DHEA is the building block of all hormones, and if yours is low (as is the case with most autoimmune patients) it needs to be raised.  Vitamin stores carry DHEA, but only in 25 or 50 mg.  You'll probably need 100mg.  For that, you'll need the internet.  Sports medicine companies supplying to men/virility are your best bet.  I use AST/Sport - versus using 25 mg x 4 = 100 mg.  I already take so many pills, I don't have room in the pill case for 4 when 1 will do.  Plus, 1 costs less than 4.

What works best for me is Evoxac, Vitamin E, and tons of fluids.  I hope you find the same works for you.

[shelsta81]

Hi, I also have that weird jerking in my muscles. I have Lupus, antiphospholipid antibody syndrome, & RA. I have told my doc about it & he doesn't seem to care much. I am actually looking for a new rheumatologist. Please let me know if you hear anything about it. Good luck!
Michele

[Rite760]

Once again. Thanks to everyone. I can't believe this post is still running! I'm new here and I feel guilty because I don't know the answers to other people's problems though. I'm ok on the thyroid forum now coz I've learnt more now. But anyway I'm so glad to see I'm not the only one with this weird muscle thing. I too asked about it and didn't get much response. So I hope someone out there might come up with something we don't know about to stop the muscle sensations.

[vashore]

Just need to see if you are okay yet.  I was diagnosed this week.
I would be very glad to hear you are doing better.  We are on vacation in Europe and I am miserable.  Today we went to a very sad Jewish Museum and I cried.  What a mistake to cry!  My eyes are killing me!  I guess I am lucky that my husband is a rheumatologist.  Not overly sensitive to my issue.  I guess now I see how he is with patients!  Is there anything natural we can use?  My worst symptoms are my joints, dry eyes, constantly having to urinate...not fun while touring foreign places.  My face feels like it is in a vice on the sides.  I wish you could e mail me directly, but I don't know about the privacy of all these sites.  Good luck to you.

[MrTullo]

I have the same symptoms!!

[mfrancisco]

Hi everyone,

I have Sjogren's, too.  I am 32 and was diagnosed 3 years ago.  My MAIN symptom is the tingling and muscle twitching.  They were looking for MS at first, but found Sjogren's through the blood tests.  I have very dry eyes, too.  Right now I am having a bad flare and it's driving me crazy.  Does anyone have any ideas regarding what vitamins/natural remedies to take?  I have heard fish oil is good because it's anti-inflammatory.  I take it, but wonder if I need to take higher doses.  I hope we all feel better.  

[illinwithoutacause]

dear mfrancisco,

i am a probable sjögren's sufferer as well based on positive lip biopsy and dry eye.

my rheumy told me to take 2000mg fish oil daily--make sure you get a high quality product that clearly states it does not contain PCBs.  she also recommended cooking with ginger and turmeric, but if it's more convenient, you can take supplemental ginger & turmeric in capsule form.  i haven't tried this, but i have heard that evening primrose oil can also be good for reducing inflammation.

a basic anti-inflammatory diet is also very helpful.  if you google anti-inflammatory food pyramid, you will find an excellent resource.

best wishes,
binx

[Lori707]

I don't have sjögren's but do have other autoimmune problems and Lymes disease. I have the same neurological symtoms though. My doctor wanted me to take 5mg daily of Prednisone and I refused. I already have osteoporosis and don't want to make it worse.

About 2yrs ago I did a lot of surfing through different sites on the web. I got myself onto an anti-inflammatory diet,stopped eating red meat and dairy. I take lots of vitamins including 2,000 mg of fish oil in a pill form. It has no PCB's!! I take 1,000mg in the AM and 1,000mg in the PM. My inflammation went down so much and I don't have much pain from my arthritis. I joined a gym and exercise. I find that if I exercise I fall asleep better. I do take Gabapentin(Neurontin) for my whole body parathesia. As for the muscle twitches,pulls and spasms, I think it's the Fibromyalgia. Try to take up meditation and stay stress free. That's easier said than done but try it anyway.
By the way..I'm 59yrs old and am trying to take each day as it comes. I admit I'm scared but when I feel this way and get too anxious, I make myself think of something else. I have to stay calm and relieve my stress.

Best of luck to all of you!

[Deborah2008]

I am 43 years old always remarkably healthy until 3 years ago when I was involved in a motor vechile accident. At first I was treated for disc injuries. After months Igota bad infection which messed with my blood counts so bad I was hospilitized. I was never the same, have had too many freeky things to mention here. Bottom line was diagonsed with Sjogrens. I have severe like arthritis conditions daily, burning, twitching and dry mouth. Have been to several Rhuemotogolist that say my problems are not from Sjogrens so I should go back to my pain clinic. I get 3-4 monthly injections.combo  anti inflamitory and pain drugs. It helps get me back on track and off heavy narcotics for a short term perhaps around 2 or 3 weeks all symptoms return. Than back at clinic. How can I tell for sure what is causing the pain? I test for other autoimmune and sometimes its postive and sometimes its negative. Any other type of dr I should consult. I usually just ignore it out of fustration and stay on my regiment until freaky stuff happens. Some answers I received are sorry sweetie we don't have anti-twitch meds. any help would be greatly appreciated I have been suffering for 3 years nows.

[TrudieC]

The tingling and burning could be from fibromyalgia which often goes in hand with Sjoegren's.  Lyrica has helped me with that.

[ewford]

Fibromyalgia is 99% caused by Mycoplasma infection as per prof Dr Garth Nicolson of IMMED   www (dot)immed (dot) org.  if you truly want to find out what is wrong, I suggest you go there and look under autoimmune illnesses.  He has written 3 world renown citation papers and over 600 peer reviewed and accepted papers.  Infectious Mycoplasmas or Lyme disease.  PS, standard medical doctors will never figure this out and standard Labcorp/Quest tests will not see it.  

[SassyGG]

I've been diagnosed with several autoimmune diseases including Sjogrens Syndrome and Fibromyalgia.  The random muscle twitches all over my body have come and gone for years.  Unfortunately, they have recently increased in both frequency and intensity.  A friend of mine with MS recommended I try magnesium oil sprayed topically on the skin.  I'm finding it has helped some.  It is a recent discovery, so I'm still trying to determine if it is really helping, if it is psychosomatic, or if the timing is a coincidence.  Have any of you tried a magnesium spray, and did it work for you?

[cargillwitch]

I have sjogrens and at first had crazy muscle twitching. Very distracting! When some bloodwork came back that I had a magnesium deficiency I did some research as to symptoms and low and behold muscle twitching, constipation ,insomnia and anxiety came up as side effects of low magnesium! I ticked off each one. I now take a minimum of 400 mg each day of magnesium( citrate). If I notice any of these symptoms returning in a large way I increase the dosage for a few days. Anyone with AI disorders seem to have difficulties with absorption.Even with a good diet we seldom retain all the nutrients we take in. I see this is a very old post. Hope by now you have found some relief!

[notwell921]

I have a lot of autoimmune problems and sjogrens  is one of them I am trying different things and one of them is juiceing no medication and all supplements I believe lack of sleep is one of the largest  contributeing factors and since doctors cant figure it out one way or another I will by the way does anybody know if you can collect social security with ibs,hoshimotos,and secoundary sjogren Im 51 and it isn't easy because of these autoimmune diseases

[toourlady89]

I have read that Sjogrens could be a symptom of Mg. deficiency. Supplementation will help you sleep better, get more relaxed even thru stressful moments, helps muscle twitchings, IBS, auto immune diseases.
The Miracle of Magnesium book by Dr. Carolyn Dean is very helpful. Mg is involved in 300 body enzyme processes that lack of it would cause hundreds of symptoms, few of them as you have.
For dry eye, I found that Cold Expressed Castor Oil helps. After my years of dry eyes, using all kinds of eye drops, I accidentally found that Castor Oil relieved my eye pain and also the swelling around my eye. From google, I found that Castor Oil can indeed be used for the eye. I apply it on to my upper and lower eyelids before sleep, what a relief. Wish you well.