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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

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  • Guest
    Guest

    Posted

    I could not agree more. Sjogren's is so much more than dry eyes and dry mouth. I wish our doctors would educate themselves better.

    My problems in order of most acute:

    Fatigue

    Cognitive impairment

    Depression

    Painful parotids

    Dry mouth

    Itchy skin

    GERD

    Painful hips

    Partial hearing loss

    Blurred vision

    Dry eyes

    The next doctor that tells me it's just dry eyes and dry mouth I'm going to punch them on the nose!

  • alicea
    alicea

    Posted

    I cant agree more, doctors dont have enough knowledge about it, the average GP thinks it is a bit of dryness . I have all the same a you. it is a terrible thing to be aflicted with . There seems to be no interest in Sjorgrens. sad
  • Rachel_-_Hampshire
    Rachel_-_Hampshire

    Posted

    Hi Everyone!

    Its taken a good few years, but now being seen by a rheumatologist and they suspect that I have Sjogrens Syndrome. I completely sympathise with the post on 14th April 2010, that generally, GPs don't seem to know much about the condition, which at times, has left me feeling completely helpless.

    I have now been put on Hydroxycholorquine, Codeine for joints and aches and pains - 6 months in and I am waiting for a miracle. Eyes treated with Celluvisc regularly throughout the day and have Biotene toothpaste and mouth gel which you can by from most good shops such as Boots.

    I have all of the symptoms listed in many of the previous posts and am currently struggling terribly to alleviate the chronic pain in my hip. I try to keep active, but to be honest, I am just so tired keeping a full time job, and trying to maintain relationships. However, one thing it has taught me is to ensure you have 'you time'. It's important to try and get as much rest as possible, which is not easy I know, when you are waking during the night.

    I hope greater awareness is made of Sjogrens Syndrome, but if there is anyone out there who doesn't feel they are being taken seriously insist you see somebody else! Don't be brow beaten by anyone in the medical profession: they are not God. Perservere and lets keep in touch - it's good to share experiences and learn from each other. God bless.

  • LABRADOR_LOVER
    LABRADOR_LOVER

    Posted

    HELLO TO EVERY BODY AND THANKS FOR THE INTERESTING POSTS. I THINK I PROBABLY HAVE

    NOW GOT SJORGENS SYNDROME AS I HAVE ALL THE SYMPTOMS. I WAS WONDERING IF ANYONE KNOWS IF THIS IS TRIGGERED BY POLYMYALGIA ? I WAS DIAGNOSED WITH PMR 2 YEARS AGO AND I WOULD THINK THERE MUST BE A LINK. I AM WAITING TO SEE MY G.P. AT THE MOMENT.

    TAKE CARE AND KIND REGARDS FROM LABRADOR LOVER, ESSEX.

    • lily65668
      lily65668 LABRADOR_LOVER

      Posted

      Not necessarily triggered. But they definitely seem to be connected. I got RA in my mid-30s, followed by Sjogren's at around 50 (though not diagnosed till I was 60) then polymyalgia in my late 60s.
    • pam_87693
      pam_87693 lily65668

      Posted

      Hi Lilly I read your post, most interesting! I don't think Sjögren's could possibly be Psychosomatic though I am sure there are questions that might relate to the stress of having it! I have EDSIII which accounts for most of my oral and possibly ocular problems and that is inherited! To add to this I inherited PCOS too so by 20 I was totally dry, mouth terrible so had Henrik been alive which actually he was! I would have had SS at 20! However the stress is the markers, no markers no drugs! So at 68 I really no longer care about drugs or anything more to improve my life. But I am sure that the clamour to be understood, to try to understand the complex problems does cause stress that in time causes the numbness and tingling you refer to, the neurological symptoms! So I completely agree about the neurological aspects but there must be a clinical base to Sjögren's. I took myself off to UCHL to find out if there is! I am totally seronegative, completely no SSA No SSB nothing on lip biopsy! I really wish my dentist hasn't mentioned SS! 
    • lily65668
      lily65668 pam_87693

      Posted

      Pam, there is an obvious clinical base to Sjogren's, but that doesn't mean it can't be psychosomatic. I have all sorts of inflammation markers in my blood, plus anti-salivary gland antibiodies, which is what clinched the diagnosis. But I know beyond any shadow of a doubt that my own condition is psychosomatic, and it's not the first psychosomatic illness I've had. I think that may be why it has never got too serious, and I've had such long remissions. I can't entirely control my immune system but I suspect it knows I've got my beady eye on it, so it doesn't misbehave too much!

      It's a mistake people regularly make. Psychosomatic doesn't mean imaginary. Far from it - you can die from a psychosomatic illness! Think about all those poor people who develop cancer just months after a divorce or the death of a loved one. It means that the illness has been generated by the unconscious workings of the mind. We know a lot about how the immune system works - T-cells, cytokines and all that - but next to nothing about its nature. I personally believe that will be the next big discovery, and will turn out to be something along the lines of the difference between Newtonian physics and quantum theory. But I'm not holding my breath. I very much doubt whether the discovery will be made in my lifetime as most medical research is driven by Big Pharma, and I doubt there'd be much money to be made from such a discovery!

    • pam_87693
      pam_87693 lily65668

      Posted

      Lilly you are quite correct, certainly about cancer caused by stress. I have seen this over and over again. I have spent my life saying it's stress related. I have been saying this in my FB group, think mind. I am certain that there are few illnesses that are inherited. Sad I have, I inherited EDSIII from my dad and PCOS which I believe is inherited in the womb from my mum who had Psoriasis. I have been training them to think this way as I am totally seronegative. If I had bumped into Henrik age 20 he would have told me I have his syndrome! I think you are right, certainly in relation to neuropathies. Therethank you Siri
    • pam_87693
      pam_87693

      Posted

      Sorry my iPad! I was just saying this to my husband I wish Mr. S hadn't come up with his ideas as I would have then thought I know why my eyes, mouth and vagina are dry I have EDS except of course I wasn't told that. I only found this out 2 years ago! I know all about PCOS except I didn't realise it lasted a lifetime, and in my day it was called Stien Leventhrall!  However my GP took up the Sjögren's and sent me for numerous surgeries that were unnecessary! I was given the wrong drugs for someone with EDS too! Thankfully I don't do litigation as I know it costs the NHS thousands and its under enough pressure as it is! 
    • lily65668
      lily65668 pam_87693

      Posted

      Oh yes! That's why I stay away from doctors as far as possible! I suppose I'm fortunate in that my training and experience - albeit dating from the 60s and 70s - still stand me in good stead in deciding whether a symptom really warrants medical attention. And I'm careful to keep up with screening for anything that might make my old age a misery without necessarily killing me - tooth and gum disease, intra-occular pressure, blood pressure, blood sugar, bone density etc. Apart from that, I try to maintain a healthy lifestyle and avoid doctors like the plague. In fact, I think avoiding doctors is probably the most important part of a healthy lifestyle!
    • pam_87693
      pam_87693 lily65668

      Posted

      Sadly for me though, I wanted to become a doctor, my son is one. I have been ill all my life so in my case this would have been utterly impossible. However my interest in medicine from age 6 has helped me to diagnose many, I was very keen on preventative medicine although I understand that the latest thinking is now against it. It has however saved my husband from Prostate cancer, his GP who was the same age was not so lucky. I certainly think preventative medicine is good. I spend my life now helping others to think about their health. Some are very lucky they inherit good genes. I sadly haven't been so lucky, so my consultant who is the BSSA President said use the only bit of you that still works to run the group I do. I hope the BSSA medical committee will agree to us being official. That is why I keep this group going as many are alone and frightened. They feel vulnerable. 
  • joxy1
    joxy1

    Posted

    I hope someone is still reading this forum, it is over 12 months since it was posted on.

    I have questions for those with SS.

    Kind regards

    Jane

    • tracy79802
      tracy79802 joxy1

      Posted

      Hi Joxy - what are your questions?

      I was diagnosed w/SS about 6 months ago and learning more everyday. this forum has helped a lot.

      What are your questions?

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