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fibromyalgia/myofascial pain/ Sjogren's fibromyalgia/myofascial pain/ Sjogren's

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  #11  
Unread 12-01-2004, 11:31 AM
fibromyalgia/myofascial pain/ Sjogren's

Dana,
Pool therapy works GREAT and you may want to consider that, too. My rheumatologist's office has its own therapy pool, and it's like a huge jacuzzi with bubbles! They have a treadmill and bicycle underwater, so it's a great workout with no stress on your muscles. The warm water is so soothing, too.

Choose a massage therapist really carefully. Some claim to be gentle but when your muscles are super-sensitive, gentle takes on a whole new meaning!

Best wishes,
Julie-Anne
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  #12  
Unread 12-02-2004, 04:42 PM
fibromyalgia/myofascial pain/ Sjogren's

I wish we had somewhere with water therapy, that sounds great.

I use to love doing water aerobics, but the only affordable class is taught at 12:30 in the afternoon. I work full time so thats out.

Dana

  #13  
Unread 12-05-2004, 09:50 PM
fibromyalgia/myofascial pain/ Sjogren's

Hi Northlights,

This might sound strange but ask your DR to check your blood for HLA-B27 that is the genetic marker for Ankylosing Spondylitis. The symptoms you have described sound amazingly familiar and I was diagnosed with AS 8 years ago. It has very similar symptoms to Rheumatoid Arthritis and Lupus but also has a few little tricks of its own such as ainfection you can get in your eyes called Iritis (not nice at all). I had the Iritis first and that is how they found the AS. If you have the test and find you don't have the HLA-B27 marker it can still be AS but it is more common to have that marker. A simple blood test can tell a lot. Good luck

regards sasha
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  #14  
Unread 12-07-2004, 07:49 AM
fibromyalgia/myofascial pain/ Sjogren's

Tam -

Hi there...I was reading this thread yesterday and went to reply and accidentally started a new thread!! It is called something like "Celiac/Arthritis-like symptoms" - you may want to read it. Often people who have an intolerance to gluten can have lots of arthritis-type pains and they have had improvement when going on a gluten-free diet. Celiac is also associated with lots of other autoimmune disorders, Sjogren's being one of them, so that is what caught my attention in your post. Celiac is often misdiagnosed for years. I was diagnosed 18 years ago with Chronic Fatigue/Epstein-Barr Virus and spastic colon and then about 9 years ago, went through testing for Lupus, but it was negative and they decided it was a Chronic Fatigue relapse. In hindsight, it appears that it has been either gluten intolerance or Celiac and it just finally got so bad that everything started falling apart!! I hope that you can find some help. Please let me know if you have any questions and I will try to help you. I've actually been wondering if I have Sjogren's along with my Celiac or not. Sometimes I wake up in the middle of the night and my eyes are just super dry and feel like they have glass in them scratching them. My vagina is also super dry, but then again, I had the hysterectomy, so I'm assuming it is from that instead. It's hard when symptoms overlap to figure out what the cause it sometimes. At one point, my gums seemed really dry, too, but it seems to have gotten better, so I don't really know what's up!!! Good luck with your search!!!
  #15  
Unread 12-08-2004, 06:40 PM
fibromyalgia/myofascial pain/ Sjogren's

Hi Sisters
I was just reading all of your stories and was wondering if I am suffering with fibromyalgia or celiac disease.
My problems started just before my hysterectomy, all it took was one nasty little migraine and them wham....it felt like someone was snapping rubber bands all over my body, my legs and arms ached. Nowadays I seem to hurt mostly from the knees down, above and below the elbows, hands, shoulder's and neck.
When the legs are hurtin, I have to elevate them.
I know I am going to have a bout because it's as if my whole body has the tremors.
A friend mentioned Celiac disease to me because of my weight loss and stomach problems, I always thought it was a gallbladder thing, because the stomach problems come and go.
I am having an MRI done next week and I see a Rheumatologist
in January. I try very hard to keep from becoming depressed, but the not knowing why I am feeling the way I do makes me sad.
Words of encouragement and advise are greatly appreciated.
Thanks
Kim
  #16  
Unread 12-08-2004, 07:09 PM
fibromyalgia/myofascial pain/ Sjogren's

Hi, Kim -

I don't think I can be of much help with the body aches/tremors, but if you would like to ask me any questions about Celiac, I'd be happy to answer them. I'll PM you my e-mail address if you'd prefer to write that way. I hope you can get some answers and help soon!
  #17  
Unread 12-10-2004, 12:24 PM
fibromyalgia/myofascial pain/ Sjogren's

Hi Girls!
Very interesting posts. I was examined for ankylosing spondylitis earlier this yr, all tests including mri and hla b27(?) which proved negative, but an xray which showed sacroilitis. Was told by rhematologist it was due to mild wear and tear! More recently I have been having awful neck pain........After some research on the net and books, it seems it can take yrs to get a proper diagnosis for rhematic disorders especially Ankylosing spondylitis. I wonder if there could be a connection between early menopause or lack of hromones. Also does anybody have any advice on getting diagnosed for As and the like
Thanks
Sandie
  #18  
Unread 12-10-2004, 04:56 PM
fibromyalgia/myofascial pain/ Sjogren's

Hi Sandabella,

The best suggestion is try another rheumatologist. It took them years to find my AS and in the end I told them I had it and then said "prove me wrong"....they couldn't. My sacro joints were the first to show changes and cause me the most pain on a daily basis. Just perservere it is all you can do I am sorry to say. My normal everyday Dr was finally the one who officially diagnosed me with AS. Try keeping a diary of where you are getting pain and at what times of the day/night and if it goes away etc maybe that will help back you up at least.

Good luck
Sasha
  #19  
Unread 12-10-2004, 07:12 PM
fibromyalgia/myofascial pain/ Sjogren's

I'm a massage therpist Myofascial release will help. It won't happen over night it take some time before you feel relief. It all depends on what your musles want to do. Massage help a lot of thing and it nature. I know I don't like to take all these meds I rather do thing nature. Have you ever heard of CST ? It helps release restrictions of the body and I think it would help you. If you have any questions feel free to write me.
GOOD LUCK!! And Good Bless You!! I'll keep you and everyone else in our group in my prayers.
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