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Wendinthewillow
Wendinthewillow

Hi folks

I have suffered extreme dryness in my mouth for about 6 years, my GP used to grin, shrug his shoulders and tell me it was my medication, even though I have been medication free for about 4 years now... Over the last year it has got a lot worse, the inside of my mouth and tongue feel like sandpaper, my gums are very sore some days, I sometimes get this awful coating on my tongue and gums and an awful taste I can only describe as metallic ... I also suffer from this awful gagging reflex, mainly when brushing my teeth ...

I managed to get an appointment with an ENT bloke who I saw today and he suggested I may have Sjogrens and I'm awaiting blood test results ... 

If the test is positive can I complain about my GP .. for not acting earlier 

0 likes, 12 replies

12 Replies

  • lily65668
    lily65668 Wendinthewillow

    Posted

    Good luck with that one!

    Sorry, seriously - we all have the same problem. For one thing Sjogren's is difficult to diagnose, and also very few GPs or other doctors seem to have heard of it. I had a whole ragbag of symptoms for ten years before getting a diagnosis, which seems to be about par for the course. In that time I consulted my GP, a dermatologist (for a skin rash), an opthalmologist for the associated dry eyes, a rheumatologist (arthritis tends to be part of it too) and a dentist. None of them put my symptoms together. In the end, it was finally my GP who relented and ordered a blood test for anti-salivary gland antibiodies, which came back strongly positive.

    As a sufferer and a former nurse (who also didn't figure it out!) I can't advise you strongly enough to put aside any resentment towards your GP. Sjogren's is an auto-immune condition - i.e. one in which the body attacks its own tissues - and as such is very much affected by our mental state. Harbouring resentment is a very good way of ensuring that your condition will progress and affect more systems.

    The best way to approach Sjogren's is to accept it, live with it and not get angry about it. There's no cure anyway, whatever stage it's diagnosed at, so early or late diagnosis makes no difference. Like all auto-immune conditions, it's very susceptible to spontaneous remissions, or even complete disappearance. I had ten years of misery, with dry eyes, dry mouth, arthritis, peripheral neuropathy and Reynaud's syndrome, after which my condition suddenly improved over a period of about six months, with disappearance of most of my symptoms. Six years on, I'm left with just a mildly underactive thyroid, which is effectively treated with medication, and occasional episodes of dry mouth and eyes, which never last very long.

    Incidentally, Sjogren's being the weird, elusive condition it is, your blood tests might come back normal anyway... which doesn't mean you don't have it! Often the disease is only diagnosed on the basis of symptoms. Your doctor should be able to advise you on products such as mouth gels or sprays to relieve your symptoms. You can help too by cutting down on sugar - particularly in drinks, and that includes smoothies - and drinking plenty of water in small quantities at regular intervals. Drinking large amounts of water at a time washes away what little saliva you have.

    Stay positive and there's every chance your symptoms will never get any worse, and may eventually clear up. Wishing you well!

    Lily

    • Wendinthewillow
      Wendinthewillow lily65668

      Posted

      Hi Lily .. 

      I've not got any resentment towards my GP, just annoyed that he never takes me seriously ... Positive is my middle name, nothing will beat me, I have had COPD for 14 years now, had a bullectomy in 2004 both lungs, back to work within 6 months and totally medication free .. I also had a ruptured cerebral aneurysm clipped 6 years ago, returned to work within 5 weeks ... 

      Until today I had never heard of SS ... I drink plenty of water and on the advice of a friend chew plenty of gum, I'm not really a sugar person but I do virtually live on chilli ... the hotter the better.. perhaps this is a contributary factor, didn't think to ask ENT today but then the chilli is good for my respiratory tract .. 

      I suffer awful intermittant pain which one specialist told me was fybromyalgia ... then went on to tell me he didn't believe in it ... How can I suffer something, someone don't believe in ... thankfully the pain isn't fulltime and I live with it 

      Thanks again for your advice 

    • jenny55563
      jenny55563 Wendinthewillow

      Posted

      Oh and the specialist who doesn't believe in fibromyalgia......what an arse it's true they don't know the cause or the cure (pretty much the case with all autoimmune diseases) but it is very real and very painful 
    • lily65668
      lily65668 Wendinthewillow

      Posted

      Wow, you've really gone through the mill!

      You're obviously doing all the right things - but as far as the water is concerned, small amounts taken frequently are better than a lot at any one time. There are a lot of useful chemicals in saliva, so you shouldn't wash them away by drinking large quantities of water at once.

      I think chilli is good too - especially in your case. I don't have COPD but Sjogren's tends to thicken all your secretions, so I have plenty of problems with sinusitus, catarrh, phlegm etc. I find nothing clears it all out like eating a raw chilli or two!

      I think I know what your specialist means when he says he doesn't believe in fibromyalgia. I've clearly had it for the past year or so and I don't believe in it either! As a result, the muscle pains and fatigue are slowly wearing off. It's not that it's imaginary - some days I couldn't bend down to put my socks or underwear on - but I'm convinced it's psychosomatic. (Not remotely the same as imaginary, in case anyone is getting upset about that.) I'm aware of having had psychosomatic conditions before and I always find the best approach - for me anyway - is to treat the symptoms if necessary, e.g. with mild painkillers etc., but otherwise make a determined effort to ignore the whole thing on the assumption it will eventually go away. And it always has so far...

      Sounds as if you have the kind of attitude that will carry you through an auto-immune condition without too many problems.

  • jenny55563
    jenny55563 Wendinthewillow

    Posted

    It's a hard one to diagnose, I have seen gynaecologists, gastrologists, rheumatology etc etc all consultants, been scoped every way available, had litres of blood taken, ultrasounds scans etc and they are just saying hmmmm maybe it's Sjögren's at first they said it was my body recovering from thyroiditus (have anti bodies and produce no thyroid hormone at all, only noticed when I started slurring like a drunken lady and got a beautil goitre) but that was a year ago, got on the levithyroxine, felt FAB then few months later all joints started hurting, spent a week in bed with debilitating fatigue tingly fingertips swollen joints brain fog diohrea, stomach cramps the list went one, I used to get embarrassed giving my symptom list, who'd have thought the least bothersome symptoms (for me) were dry mouth and eyes.  Anyhow going through antibody testing ATM been to see dentist, on high fluoride toothpaste, special mouthwash for when the mouth gets really sore, I chew tons of gum (found that to be the best one) and chilli is really good! Though dentist did say avoid acid stuff are tomatoes acidy I don't know but hey you've got to have some pleasures lol there are mouth sprays available and if you google the American Sjögren's support groups they are very knowledgeable in products to ease these problems 
    • Wendinthewillow
      Wendinthewillow jenny55563

      Posted

      Yes Jenny a specialist that don't believe in something he diagnoses .. 

      He didn't even ask me any questions or examine me .. When I questioned him, he just said you've got it, I can tell by your notes, take these ... and I'll not need to see you again ... 

      I just said Huh!! and walked out .. Got referred to a rheumatologist at another hospital, 2 injections later and within a week the pain had almost disappeared ... it still comes back from time to time but no where near as bad as it was back then. . . I'm more concerned at the moment with this possible SS diagnosis ... Funny thing is, I were thinking about it last night, cos I said to the blood taker, have you heard of this, what was written on my blood form, erm no she said, we can barely read what the Doctors write, so how the hell do they know what my blood is to be tested for >.Hmmmm ! smile

    • jenny55563
      jenny55563 Wendinthewillow

      Posted

      They would normally check for anti-ss-a (or ro) and anti ss-b (or la) for Sjögren's, however since looking at my bloods forms (I make notes of what they check, they haven't checked these btw why didn't he used the nhs blood taking printed form? They have a checklist of bloodtest abbreviations they just check the ones they want and print it off are you in the UK? 
    • Wendinthewillow
      Wendinthewillow jenny55563

      Posted

      Thanks Jenny .. I will let you know soon as I get results ... if anything like my sinus scan results it'll be at least 4 months ... Although I will be chasing these results up with my respirarory consultant in December if they not back by then ... smile

       

    • Wendinthewillow
      Wendinthewillow

      Posted

      Oooooops yes I am in the UK ... Lowestoft Suffolk 
  • jenny55563
    jenny55563 Wendinthewillow

    Posted

    How strange that he handwritten blood taking forms?! Good luck with your respiratory tests btw my pillcam endoscopy came back normal, so I asked why there's inflammation inbthe stools and upper ab pains (good news is they are finally slacking off after 2 months) and they couldn't answer that just gave me another gastro apt in jan, unfortunately joint pains returned this time in hips and tail bone so I'm carry a cusion around seeing the rheumatologist in 2 weeks.  I find that doing a morning yoga routine helps a lot. Saw dentist whose prescribed some high fluoride toothpaste and mouthwash says not producing enough saliva, so have to prevent tooth decay luckily vid got good teeth ATM attempted eye drops yesterday for dry eyes very funny lots of blinking and arms flailing in the upside I laughed so much my eyes started to stream tears hurrah!
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