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been diagnosed with SS for 21 years anyone else like that?..

Posted , 10 users are following.

christine_73623
christine_73623

I have been diagnosed with SS for 21 years since I was 31 I do

believe I have had SS since I was 18 ,,,, I am now 52 ,, I would like

to give some advice and what I have done to help myself

This is my story

I began to notice the glands in my neck swelling up and they

Were painful to touch,, and I started to loose my saliva in my

mouth to the point where I had none,,, I drank so much water I

thought I was going to drown my kidneys

Finally after going to the doctor I had an appointment with the

specialist, ! He diagnosed me with SS ,,, by this time I had just had my third child,,, I was very I'll, I lost 5 stone in weight and had no saliva and I mean none,,,we did not have a computer back then and I knew nothing about SS the doctor offered me anti

depressants as I became depressed I stated to him that one of

the sidel effects was a dry mouth no thanks to that Also I started

to have to have absolutely awful migraine headaches and I still

have them now

It took about 3 years that I started to improve again and with a

small child that was extremely difficult

I just got on with life as I am not one to worry as I believe SS was out of my control ..The years went by and I would have very bad

bouts of fatigue but I went on to get a degree and traveled a lot of the world about 2008 I had to have a break from work for six

weeks I was very sick they could find nothing wrong with me I

had lots of tests done and nothing My symptoms now had

changed

I had inner shaking of my body ,,,,!my musclesson felt like they

Were

burning ,, I could smell vomit all the time and would vomit,,,And

my nerves in my legs began to move and in time this would

spread to my entire body,! I would have muscle aches and joint

pain far worse than what I had previously experienced Also my

hair started to fall out so I take a herbal pill for this,,

And I have terrible dry skin , I put lots of baby oil on every night in my bath. I also have bad inflammation in my body and sits in the wall of my chest and gives me pain

I also began to experience cramps all over my body ,,,hands, back,,, to neck and stomach ,,In the finish I had to give up work in 2012 but the fatigue was very bad

About a year ago I was admitted to hospital I had phumonia and was very ill I went to intensive care and was in life support for 11

days this was complicated by SS I was lucky to be here today

Was has helped me through the years with SS take each day as it comes,,,, diet no sugar,,, no gluten ,, eat lots of ,vegetables, ,fruit

nuts seeds and a small amount of meat,,, I do not eat diary either

Diet is extremely important with SS

Usually if people have a flare it is what they have eaten And the most important for me I do not take any medication at all but for

oNE Sleeping pill ,,,!I take natural things for my joints But will rub a voltaren gel into my muscles I still walk walk everyday I believe over time taking medications makes SS worse over the long run

I was wondering how many other people have had SS for a long

time?. Today I do not work but am very lucky to have a wonderful

Husband, I have 3 cildren and 8 grand children that keep me busy

3 likes, 37 replies

37 Replies

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  • jean34329
    jean34329 christine_73623

    Posted

    All this has happened to me.

    My eyes werw throbing and very dry. I thought I was breakin down.I ate some rice cakes two days ago and feel very ill.. I  have a gluten, wheat, soy, yeast and cows milk intolerance. What is the treatment for this horrible condition?

  • jean34329
    jean34329 christine_73623

    Posted

    Dear Christine again!

    I would be grateful for aany tips on coping with this condition. I have it. How was your Sjogrens diagnosed? What happens when you have a flare up and how long does it last? What brings it on apart from food?

    What foodstuffs bring it on?

    What meds exacerbate this condition?

    I would really appreciate any help and advice you have to offer.

    Best wishes

    Jean.

    • christine_73623
      christine_73623 jean34329

      Posted

      My SS was diagnosed by a lip biopsy very nasty ,, When I have a flare up it will last only a few days maybe up to 5 days I feel

      awful like a have

      been hit in the body with a car,, Every time now I eat something with sugar like ice cream or bread or anything with gluton the

      next day wow terrible But I have only felt that way the last 10

      years As before that I could eat anything I wanted too.

      I have never been on any medication at all so I cannot

      recccomend any only naturally herbal for joints I do take apple cider vinegar everyday 3x per day and a tablespoon at a time

      I take all herbal for my hair, joints I drink juices every moring

  • pam_87693
    pam_87693 christine_73623

    Posted

    Hi I agree Christine, I think I have had Sjögren's since I was 21! At that ahe if Henrik had seen me he would certainly have said I had it. I had dry mouth, dry vagina (I was married then) and certainly dry eyes Schirmer 2.3mm. I'm 68 now! Sadly I have had to resort to medication as my Sjögren's is Psoriatic and I have Chrohn's or Colitis. I am negative for Coeliac. Like you I have a heightened sense of smell. Do you live in the UK? If so why don't you join us in British Sjogrens we are a group of BSSA members who support the UK charity the BSSA. 
    • jean34329
      jean34329 pam_87693

      Posted

      Dear Pam

      are you psychic or what. I have got a headache due to my hubby eating a trebor xtra strong mint. My scalp is tingling as well.Dry eyes.

      The smell suddenly hit me and I got a heeadache straightaway. I felt sick. He had to open the patio window which is still open. I have a sickly headache now.

      Other smells have caused a similar reaction.

      Legs are burning esp the knees.How do you stand this?

      Jean.

    • jean34329
      jean34329 pam_87693

      Posted

      I meant to say that yes I will join the BSSA.

      I think I have had this condition for years but it went undiagnosed.

      Then in December 2013 it worsened.

       

    • pam_87693
      pam_87693 jean34329

      Posted

      Sadly Jean it's a fact! I have Primary seronegative Sjögren's, Psoriasis, PsA, hypothyroid, Fibromyalgia, EDSIII, and POTS. I am sure and as my consultant didn't conradict me when I told her I have SLE! to add to that I Have PCOS 4 sons, 1 adopted, one miscarriage due to GP error, natural son 1 cot death 10 weeks 6 days old died crying. Son 2 now 40 a consultant,  son 3 37, son 4 conceived on the progestogen only mini pill. He has Klinefelter's! All 3 are hypermobile EDSIII like me, Son 1 the consultant has Psoriasis. It's life. You can't blame the medical profession for something they weren't told for 50 years EDSIII is normal until it gives you problems! Mine began very early as I have scoliosis but it was only when my amazing consultant Dr. Price found it I started to research and 2 years ago to my horror I realised why! I had EDSIII So now I have educated so many consultants and they were most pleased to understand the condition and I have POTS too! 
  • lily65668
    lily65668 christine_73623

    Posted

    Hi Christine, you're inspirational, coping with all that while raising a family. I too have had SS for just over 20 years (though it went undiagnosed for the first 10) but mine started around the age of 50, which is more usual.

    From reading posts on these SS groups, I get the impression that the earlier it starts the more severe it is. Although I went through some bad times, particularly at the outset, my SS was never as bad as yours, and I went more or less into remission after about 15 years. However, over the last six months it's come back with a vengeance - dry eyes, only slightly dry mouth this time (thank goodness!) but having awful problems with RA, polymyalgia rheumatica and extreme fatigue.

    I agree totally with you about sometimes being responsible for our own flare-ups. When I had my first - and worst ever - attack of RA in my mid-30s, 15 years before my SS started, the wonderful homeopathic rheumatologist I consulted went through my diet with me. I've always had a passion for rhubarb (strange as that may seem!) and he warned me never to eat more than one bunch per season as my uric acid levels were very high. I've obeyed that rule strictly... till about six months ago, when I caved in. I cooked and ate two large bunches over a period of less than a month. And now I'm paying the price. My left thumb joint is swollen to twice its normal size, my right elbow is so painful I can't even peel potatoes and I'm hurting all over.

    Still, past experience has taught me that this will pass if I'm patient. In fact, my eyes are a bit better already and my thumb isn't quite as painful. I can now unscrew bottles and jars with just the help of my grippy cloth without having to resort to the nutcrackers!

    I also agree about conventional medications making things worse in the long term, especially steroids, but I do take homeopathic remedies during flare-ups and I've taken omega 3 capsules religiously for the past 25 years. And I think you're right about exercise too. I always walk at least 15-20 minutes a day, even on bad days. Fortunately, my hips and knees have largely been spared in this latest flare-up (apart from the inevitable spot of age-related osteo-arthritis) so most days I'm able to walk for about an hour. I retired from paid work six years ago, but still do a pretty busy voluntary job, as well as looking after a friend who has dementia. I think keeping busy is important too.

    I think it's useful to let new sufferers know that they're not going to be sentenced to a life of insurmountable illness and disability. This is a condition that can be lived with.

    • jean34329
      jean34329 lily65668

      Posted

      No one has replied to help me. Why?

      I am suffering. No support.

      Why>

    • lily65668
      lily65668 jean34329

      Posted

      Dear Jean, I understand your suffering. We've all been through quite a lot. However, there's actually plenty of useful information on this and other SS forums on this site.

      I think those of us who've managed to live with this horrible condition most successfully have done so because we've taken charge. People make a lot of suggestions, particularly about diet, but there's no cure and certainly no "one size fits all" solution. For example, some people swear by gluten-free and avoid all dairy. On the other hand, I still eat both with no ill effects - though I've found myself less drawn to wheat products in the last 10 years and can no longer eat dairy in the evening, as it tends to clog up my throat during the night and cause sleep apnoea.

      By the same token, some of us (like Christine and I) wouldn't touch conventional medications with a barge pole, while others, like Pam, find they help. Horses for courses. Other people's ideas are interesting but we're all different and we all need to find our own solutions by trial and error.

      The main thing in all auto-immune conditions is to take charge of your own condition - and that can include any medical interventions you're comfortable with.

      Finally, a brief glossary in response to your question to Pam:

      EDS: Ehlers–Danlos syndrome

      POTS: Postural orthostatic tachycardia syndrome

      PsA: Dunno - everything I found seems to relate to prostate problems and that can't be right!

      You can google all these yourself, and I'm sure Pam will be able to provide more information.

      Don't lose heart. You can make significant improvements in your condition by listening to what your body is telling you.

    • jean34329
      jean34329 lily65668

      Posted

      I have lost heart. TWO BEREAVEMENTS IN THE SAME FAMILY IN TWO WEEKS ETC, ETC.
    • lily65668
      lily65668 jean34329

      Posted

      I'm really sorry to hear about your loss, Jean. But giving up won't help you to feel better. Try and be kind to yourself.
    • jean34329
      jean34329 lily65668

      Posted

      Now?

      My brother died on May 24 then my mum in law on June 8. I have subclinical hyperthyroidism and 20 nodules on the thyroid plus PN from those b...... antibiotics.

    • christine_73623
      christine_73623 lily65668

      Posted

      Hi LILY

      thank you ,,, and yes you can go on and lead a wonderful life I

      certainly have done that,, I have lived a full and rewarding life but have retired a bit sooner than what I thought I would,, but

      keep my self busy ,, live in the here and now, and to be positive is the most important thing,,,,, wow !!! what a bit of positivity

      can do ,,,, but also having SS taught me there is always

      someone worse off than me,, I know someone that is dying and she is 16 year old ,,,, dying of cancer, it sort of puts things into

      prospective for me

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