Sjogren disease questions

Discussion in 'Fibromyalgia Main Forum' started by little, May 5, 2012.

  1. little

    little Member

    My mouth is always dry. It has been like that for years. When I wake up during the night my tongue is stuck to the top of my mouth. I drink a lot of water 24/7. The doctor has never said anything. When I tell the doctor about something new , it's always , that's fibro deal with it. How do you tell what is what. I stop going to the doctor with new things about 9 years ago. Could this be sjogrens or fibro.

    My mouth can get very dry when talking. I have to always, carry a bottle of water.
    This fibro has so much to it . It is very hard to tell. My doctors are no help. I went to a rhumy last year with a list. He said that he can't say if the things were fibro. He gave me a precripitions for pain pills and then walked out. I never said that I needed pain meds. I told him the I had pain meds. I never got that medicine.

    As many of you know it is very hard having fibro, but when you don't have a doctor or even family for support live gets very hard at times.

    Thank you for listening to me.

    Have a great day, gail
  2. Mikie

    Mikie Moderator

    The problem we have is that most of us suffer from more than one condition. We may have an immune illness and go on to develop an autoimmune illness. Many who start out with an autoimmune illness go on to develop FMS. It's unwise for docs to ever assume anything with us. Two people with the same condition(s) may present in totally different ways.

    Sjogren's, on average, takes 6 1/2 yrs. to diagnose. I have it but do not have a pos. ANA, although my CRP shows high inflammation. In our illnesses, I think it is best to run the tests but diagnose using symptoms unless the tests have absolutely ruled something out. Many of our illnesses take years to manifest themselves full blown.

    I had dry eyes and dry mouth but the worst symptom I had was extreme exhaustion, worse than with my FMS and CFIDS/ME. I was just at the point of healing from FMS and CFIDS/ME that I could work part time. SS just kicked my feet out from under me again.

    I'm lucky in that I am taking peptide injections and they are working. The first night of the first shot, my eyes teared and I drooled like a dog over a pork chop. That confirms that I have SS.

    I hope you do not have this but you very well may. Finding a good doc for what ails us is very, very difficult. Good luck to you.

    Love, Mikie
  3. little

    little Member

    Freida my eyes to feel like gravel. They itch all around them too. I will asked the eye dr for some drops. Thanks.

    Mikie, it took me over thirty years to get a fm diagnose. The doctor took me out of work in1988. He said that it was repetitive motion disease. It took me 6years to get workman compensation and ssd.
    I didn't hear about fm until about 1997. I believe that the diagnose should have been fm. I was diagnosed in 1999. I wish that there was a doctor that really knows about fm. I have relied on a book by devin strarlanyl since has been very help full. Thanks

  4. MicheleK

    MicheleK Member

    I just wanted to add that dry eyes, mouth, skin, hair can all be signs of hypothyroidism too. And many times your tests may come back in the normal range if your doctor does not do a very thorough run of tests for T4 and T3 reuptake also with The regular common TSH testing usually done. It is expensive but it usually will find the thyroid problem if it's there. Also if your reflexes and pupils dialate slowly your doctor should be looking for those signs which also indicate a thyroid issue.

    I myself have been treated for the thyroid issues so I can put that aside for now and keep a watch to see if I am developing SS. I too have dry mouth, sometimes it happens instantly out of nowhere, there just is absolutely no moisture at all (cotton mouth) to the point that I couldn't speak a word if I wanted too. I drink a gallon of water a day everyday. My eyes don't bother me but this past year my skin and hair became incredibly dry after a lifetime of being oily. I literally have to put 3 different products on my hair before it dries and it will still look dry. Skin also.

    My doctor is keeping an eye on me because as it was mentioned many with FM/ME/CFS can develop autoimmune diseases as a side dish! And now the research is showing the possibility that all of this may be somehow autoimmune even though there are no recognized antibodies for FM or ME/CFS. It will be interesting keeping our eyes peeled for the latest research as it is published.

    Wishing you all the best, MicheleK
  5. Mikie

    Mikie Moderator

    Should be routine yearly tests for us: Thyroid, Th4 and Th3. Thyroid diseases can be autoimmune. My doc said the peptide injections should cure my hypothyroidism. I recently stopped my Synthroid and had my tests done after a month off the med. I have yet to receive the results. I stopped because I started to have tachycardia and believe supplementing with the Synthroid is causing it if my thyroid is now normal.

    An eye doc with the latest equipment, including the osmolarity machine, can tell if the dry eye is caused by lack of oil glands' not working in the eyelids, which signifies Sjogren's. It was this test which made it possible to diagnose the SS. In any case, severe dry eye should be treated to avoid scratching the lens.

    Love Mikie