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.

[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

[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.  

[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!!

[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.

[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

[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.