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Does anyone have these symptoms that has been diagnosed with sjorgens.

Posted , 8 users are following.

angie1969
angie1969

Burning in arms and legs with broken blood vessels. Blisters on tongue and bloated stomach

1 like, 11 replies

11 Replies

  • Tumtum1963
    Tumtum1963 angie1969

    Posted

    Yes I have these things with my Sjogrens. Although they are also possibly associated with Scleroderma (defuse and limited) - which I'm still to be investigated for. For now it's assumed that my Sjogrens is primary though

  • Vickieadams
    Vickieadams angie1969

    Posted

    Hi Angie,

    I am seeing a doctor who has tested me for sjogren and showed up positive through blood work. I had a lip biopsy that came out negative. I had one doctor say I don't have sjogren and my rhemy doctor said I DO have sojgren.

    I do have the burning arms and legs and the bloating. I dont have the blisters on my tongue as of yet.

    I'm new to this board. I'll pray that we can feel better like maybe with no pains

    Thr arms and legs pain are my biggest problem. It's controlling my life.

    Vickie

  • deidra40034
    deidra40034 angie1969

    Posted

    Hello Angie,  Yes, I do as well.  I do not have the problm with my tongue, but my Mother has Lupus, and does have the tongue issue.  I also have been diagnosed with Lupus.  It is not unusual to have both.  My RA doc told me many times if you have one, you will have the other.  My Sjogren's has gone inside to my organs, so there are man issues, one of the others is the peripheral neuropathy in both of my lower legs and feet.  Lots of broken blood vessels in my hands, legs and feet.

    • deidra40034
      deidra40034

      Posted

      "many" issues...sorry, no edit button!  lol  Also, the lip biopsy does not always show one way or the other.  My RA doc is not a fan of the lip biopsy.  My Sjogren's is primary...then everything else came along afterward.  These auto immune diseases are very difficult to diagnose, as they can mimick so many other auto immune diseases, and that is why it takes so long to finally figure it out some times.  And also why, if you have one, you can very often have others along with them.

      good luck!!!

    • Tumtum1963
      Tumtum1963 deidra40034

      Posted

      "My RA doc is not a fan of the lip biopsy" - all very well if your bloods are positive for SS - but for some of us a very positive lip biopsy result gives lots of other information to the doctors (including neurologists) as well as a definitive diagnosis of Sjogrens. I'm really glad I had mine done now.

  • tj268
    tj268 angie1969

    Posted

    i do. also get a lot of sores all over mouth. they say my burning is small fiber neuropathy tho. have you been checked for that? it is common in sjogrens.
  • Megheart
    Megheart angie1969

    Posted

    Yes Angie I have small fibre neuropathy which causes burning in my arms, legs and sometimes across areas of my trunk. Standard nerve conduction tests do not usually reveal this diagnosis but Intra Epidemal Nerve Fibre biopsies so. However many countries do not do this test. So basically it comes down to a diagnosis based on symptoms and the clinical questioning by the doctor of the patient. All rather subjective unfortunately which can make doctors hold it at arms length.

    However many people with S.S. seem to get P.N. (Peripheral Neuropathy). So it is well documented if you read the medical literature. 

    Blisters on tongue may relate to dry mouth or can be one of those bizarre symptoms which seem to accompany these autoimmune syndromes.

    The bloated stomach can be several things but often the whole or parts of the GI tract take a hit with S.S. The peripheral and autonomic  nervous systems can be attacked and P.N is manifestation of this, so too the GI tract issues, as well as other organs.

    Despite the fact that many of these symptoms which show up in S.S are well documented, the average GP has no clue how to put all the complex 

    threads together.

     

    • deidra40034
      deidra40034 Megheart

      Posted

      Boy, I can atest to that!!  It takes a Gastro doc that understands Sjogren's!!  My stomach and intestines are a mess due to this!!  It has taken a lot to get to the bottom of it all, and finally on the right meds to help with the bloat and painful "tummy" issues!!  I always felt sick to my stomach...not actually getting sick...just always felt so queasy.  When they went in to take a good look, my stomach walls were very irritated, put me on 2 different kinds of meds, and it all settled down.  Not the ususal ones that everyone is on, but much more powerful ones, and it is gone!  Even had go into the...duadenum...part of the intestin, which also was very red and swollen, that too has settled down with the meds.  My liver, adrenals, and kidneys are also involved...which caused my blood pressure to go completely crazy, have that now under control...took nearly a year, but feeling much better now.  NOT a fun disease to have, but all we can do is to manage it, and at the moment it's being managed, and that is all I for one, can ask.  Wishing you all good luck!!  The best thing...is to have good doctors...if you are not getting good answers, or not feeling comfortable...change doctors!!!

    • Megheart
      Megheart deidra40034

      Posted

      Deidra when all my symptoms were bad and before being diagnosed with Sjögren's Syndrome I was managed by four separate specialists for all the conditions which emerged, namely a Pulmonologist/Respiratory Physician, Gastroenterologist, Neurologist and Endocrinologist and also an M.E./CFS doctor. I was very fortunate in this respect because each of the conditions were managed exceptionally well.......

      ......however it wasn't until last year that one of these specialists, my Pulmonology professor (the best) said "I see an autoimmune problem here with these test results". Now I don't know if any of the other doctors thought it and didn't say so but him saying he thought I had an autoimmune condition was my impetus for going to my GP. I asked the GP to test me for Sjögren's Syndrome, which I concluded I had, based on an Opthalmologists findings. Sure enough the results came back which pointed to S.S. My new Rheumatologist has confirmed S.S. at this point. 

      So although doctors/specialists may not put all the pieces together straight away for an 'umbrella' diagnosis, to be adequately treated for the individual symptoms is really important. Obviously though to know what is causing all of these problems (ie. the umbrella or overall diagnosis) is very useful and validates what you are experiencing in the longer term.

      Pleased to hear that you have been blessed with finding good doctors to tackle your individual challenges also. We have a lot to be thankful for!  

       

    • cath23317
      cath23317 Megheart

      Posted

      Before i was diagnosed I thought I was going loopy, all these different things were happening to me, one of my so called friends called me a hypacondriact, I was begining to wonder if I was, but then I was diagnosed with SS and Lupus and everything fell into place, thank God I thought, i even cried in the Rhumatoligist, He askd why am I crying I'm not gone mad he thought that was funny 

  • cath23317
    cath23317 angie1969

    Posted

    I have ulcers on times in my mouth after eating certain foods, my tumy is bloated also, but it's due to water and bowel problems, have them checked out, hope thats helpful

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