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My experience of Sjogren's

Posted , 13 users are following.

Penny_-_Hampshire
Penny_-_Hampshire

I was diagnosed with Sjogren's about 13 years ago and I am now 53. Initially the dry eyes/mouth was a real problems but have learned to control moisture pretty much by medication and self-help (I prefer the self-help but appreciate medical help occasionally). 5 years ago I had Non-Hodgkins lymphoma which presented as a lump in the roof of my mouth (successfully treated with radiotherapy which also slightly improved my saliva production). Now all-clear. Since November 07 I have had numbness in my feet and then March 08 very red swollen ankles/feet and red spotty rashes (various locations). I was referred to the rheumatologist who has now diagnosed Vasculitis so I am on a 6 week steroid dose. Fingers crossed!! I just wanted people to 'be aware' that other symptoms could possibly occur and to be aware that they are connected to Sjogren's (I have been given very little useful info in 13 years!). As someone said before it's one thing having this but totally another trying to explain it to people. It is one of those 'unseen' medical problems which the sufferers have to deal with pretty much on their own. Except that we have forums!! Let's talk and discuss ideas, self-help. Keeping positive has got to be better than letting the symptoms 'get to us'. My main concern at the moment is how this may affect my full time employment - is this recognised as a disability here as it is in the United States? Any ideas?

2 likes, 27 replies

27 Replies

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  • jayne35566
    jayne35566

    Posted

    hi all, I have recently been diagnosed with sjrogens, by an extreamly good rheumatology consultant so I have no complaints there, I also have leukaemia so am a bit fed up, for me the sjrogens at the moment causes dry mouth m eyes and extreame fatigue I think the steroids have caused sickness and diareah (cant spell that) hahaha also a severe bout of shingles, I also have prominante lumps in my neck, anyway my consultant says that he hopes the steroids cause the sjrogens to go in remission if that is the case how long till the steroids take effect and does anyone know how long the average emission is ??? jf at all .
  • celia93381
    celia93381

    Posted

    You are so lucky just to be diagnosed! Have suffered with symptoms for years and my doc does not acknowledge the real problems, as with so many other people I now see. I think having other people to discuss with. Will help, but not not having doctors who know enough about Sjorgrens or managing to find a forum like this,

    It's an uphill struggle. And a solitary one. Celia

  • jayne35566
    jayne35566

    Posted

    hi celia, you have rights you know tell your g p you want to be refered to an rhumatoligist don't ask them tell them , a simple lip biopsy will give you a yes or no for sjrogens

    good luck

  • lily65668
    lily65668

    Posted

    In answer to Jayne especially: have you had those lumps in your neck looked at recently? If you're seeing a consultant regularly I'd assume he'd be on to this one, but - as I'm sure we all know - Sjogren's sufferers have a much higher risk of non-Hodgkins lymphoma than the population at large.

    Concerning your question on remission, I've been virtually symptom-free for four years now, having gone through 15 years of hell before that, including the first ten years when no one (including me) had a clue what was wrong with me! But it may well be that my condition was never as bad as some of the others on this forum. No one ever offered me any treatment other than over-the-counter eye-drops and mouthwashes and prescription thyroxine (which I'm still taking now) for my under-active thyroid, which can also be part of the syndrome. I sometimes wonder whether I got off so lightly (so far anyway!) precisely because of the lack of medication or because I was just lucky.

    As a former nurse, I'm fascinated by the psychosomatic elements of my own condition. For the record, "psychosomatic" does *not* mean imaginary, it means a condition partly triggered by something in the patient's psyche. Psychosomatic ailments produce visible, measurable signs (in blood tests etc.) and can kill.

    Going back to the psychosomatic elements, the first symptom I ever had, nearly 20 years ago, was an unbearable tingling in my right big toe. Over the next year, this progressed to total numbness of the toe, coupled with a sensation of electric shock if I touched the nerve on the inner side of my instep. I consulted my GP about it several times, and she even established that the toe was indeed without sensation, by testing it with blunt/sharp pricks when I couldn't see it. She said this was down to old age and I'd just have to be careful not to injure the toe. (Ditto when I subsequently started presenting with dry mouth, dry eyes, skin rashes, Reynaud's syndrome, arthritis, carpal tunnel syndrome etc. I was about 50 at the time!)

    I lived with my numb big toe for ten years. I used to have to psych myself up to wash or dry my instep every day, as the sensation of electric shock was terrible when I touched the nerve. Then one day it was gone. Just like that. I stuck a needle in my big toe and it hurt. As a neuro-trained nurse, I knew nerves don't just regenerate - well, not suddenly after ten years, anyway. The next morning, my right big toe was still normal but the *other* one had suddenly gone completely numb, same electric-shock sensation in the nerve. I actually stood in the bathroom and said, out loud: "No, we're not doing this!" After that, all my symptoms gradually started to subside, until five years later I was in remission.

    I'm still perplexed about this. My symptoms certainly weren't imaginary. I had sky-high levels of anti-salivary gland antibodies in my blood, as well as all the inflammation markers, some days I could hardly open my mouth to eat because of the painful, bleeding cracks at the corners, my eyes also bled from the corners, all my joints were stiff, my fingers would go white and dead for hours and sometimes my left hand would be a painful claw for days on end. I can only conclude that the mind is a wonderful thing. Well, that and hope the Sjogren's never comes back!

    • pam_87693
      pam_87693 lily65668

      Posted

      Hi I am most interested in your discussion I am 68 and for 62 years I have had seronegative Sjogren's for want of a better word! At this time my diagnosis is Primary Sjogren's, (negative to blood and lip biopsy) Hypothroid, Psoriasis, PsA, Hypermobility Syndrome, Fibromyalgia and I thought POTS buy a doctor in London says may be Dyautomnia until 39 I had just the Sicca symptoms. To complicate things further I have PCOS! My fist son was born in 1964 post preeclampsia perfect it appeared until he died crying at 11 weeks! SIDS I have 3 more sons all alive and well but they will have problems in the future but being men they won't admit them! The last son was conceived on the pill and that was when my life and health slid down the slippery slope. I started to feel faint, but am not a fainter, then diagnosed with ME, Sjogren's, with that my present GP while we had private healthcare subjected me to knee ops, and other operations because of course EDSIII was thought to be benign until 3 years ago in the UK I diagnosed he has it too poor man and he agreed he does! We are both now really confused and worried about my present health, because in the UK all doctors have to abide by the NICE guidelines. A consultant rheumatologist took he off MTX25mg Injections and I had Dyautomnia, then when put back on it life improved slightly. I am now under Dr. E Price a rheumatologist who has made the diagnosis above but I seem to be getting weaker and weaker. I went up to the London Hospital for Neurological Diseases and was given an assesment and told I have disautomnia which didn't surprise me, I diagnosed it myself 3 years ago! I await 3 days as an inpatient for autonomic tests. My body feels as if I am being electrocuted as you described yours was I would be most interested to hear from you.
    • lauralaura
      lauralaura lily65668

      Posted

      Hi Lily, I know you posted over a year ago and may not be here anymore. I wanted to ask how it is that you got into remission?  Do you have any tips? Are your eyes and mouth no longer dry?  Thank you. Laura
    • lily65668
      lily65668 lauralaura

      Posted

      Hi Laura,

      First of all, it depends what you understand by "remission". I've been attacked by a couple of people on this forum who insist that SS never goes into remission, and I don't want to start another barney!

      What I mean when I say I'm in remission is that my various symptoms subside to a level where they don't trouble me too much. Sometimes particular symptoms disappear completely, only to return a few years later. It often seems to me that they've organised themselves into some kind of rota!

      I'd been in what I call remission for over five years at the time when you would have been reading my posts, but had a severe flare-up just after that. I had a bad year with tendinitis in both upper arms (a new symptom) and a flare-up of RA in my left thumb and right elbow. I also got a trapped nerve in my neck in the middle of all this, which may or may not have been down to SS. I had a miserable year, often unable to carry out the simplest household tasks. All this suddenly started improving a couple of months ago, but now I'm having a lot of problems with Raynaud's syndrome again. Like I said, I'm convinced there's some kind of rota. The dry mouth and eyes are a kind of base note that persists through all the other comings and goings, though they too vary. I only had serious problems with dry mouth and eyes at the outset of my SS symptoms 22 years ago, and up to now they've never reached the same severity again. But that's not to say they never will, of course.

      I've no idea how I get into remission, though I know it's stress that can provoke flare-ups. I've always felt I could trust my body to find its own way through discomfort and illness. That's not to say I've never taken antibiotics for a severe infection or a Nurofen pill for a headache, and I certainly get injuries treated. I also take thyroxine for an under-active thyroid - another SS problem. And I certainly wouldn't ignore unexplained bleeding or a breast lump, for example.

      All my life, whenever I've had a pain or other symptom, I've always assumed it would go away if I waited long enough (with the exception of the examples above). That approach has worked for the past 72 years, but won't always, of course. We've all got to die of something!

      It depends how bad your symptoms are, and how much you're prepared to put up with. There are people on these boards who can't eat because their mouths are so dry, or whose dry eyes have resulted in corneal ulcers. Obviously if your symptoms are that bad, you need medical treatment. But if you're prepared to put up with a certain degree of pain and discomfort, it's often worth weathering the storm in the hope of a spell of fine weather later on. So far, the sun has always come out for me after the rain.

  • jayne35566
    jayne35566

    Posted

    Hi lily ,

    thanks for your post, I have seen consultants recently about the lumps in my neck and yes I am a bit concerned as the steroids I am on don't seem to be making them any smaller, but I have had a biopsy on them which was a fairly barbaric process and told that there is no lymphoma , however I have also seen a maxi-filo consultant recently who seemed very dubious. I have 5 different appts with 5 different specialists in January and hope to get this sorted

    one way or another , I am so sorry to hear of all your problems and although I feel a bit hard done by at the moment it seems reading other peoples experiances ive got off fairly light,

    hope you stay well ! HAPPY NEW YEAR TO ALL

  • magicmaxina14
    magicmaxina14

    Posted

    I have recently been diagnosed with SS and am awaiting my first appointment.

    My question is does anyone know what will help ease the red, hot, itchy rash.it keeps me awake and I so widespread covering my head arms legs nose ears.

    Oh well moan over.

    Any help much appreciated.

    • tracy79802
      tracy79802 magicmaxina14

      Posted

      When I was diagnosed with SS 6 months ago I had bouts of itchy red rashes. At the time I used a cream to ease the symptoms but then they went away.

      My Symptoms tend to vary. Dry eyes and mouth, my glands bother me and arthritis has started in my hands. Still in the process of figuring out the best way to deal with it and this forum helps.

      Hang in there. I found that learning as much as I can about SS and finding a rheumatologist helped.

  • celia0407
    celia0407 Penny_-_Hampshire

    Posted

    Hi Penny, how did they diagnose you with Sjogrens? The Neurologist I'm going to has only done blood work. He said he doesn't think I have Lupus, but it could possibly be Sjogrens. I have a friend who was diagnosed by having a biopsy from just inside of bottom lip. Also would you mind telling me how it began & what your syimptoms were? Do you have a fever often? Do you have weakness in your arms & legs. I have extremely dry mouth - but my eyes are only a little dry. I'm on Cevimeline which helps the dry mouth. I also have to use Biotin toothpaste & rinse because my tongue was burning. I also had sores inside of my mouth & on the side of my tongue. I use Nystatin & that helps. I'm also extremely fatigued. I appreciate your help & anyone else who could help. Thanks.
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