Diagnosed January 2012 would be nice to hear from Someone

[Butterfly54]

would be nice to hear from someone

[anhydro]

First thing to realise is that everyone with this problem will have different experiences with some common factors. We can suggest things we find helpful - I recommended Biotene mouth gel to a friend and she finds it better than the product her GP gave her - but you might not. We do understand some of the frustrations and difficuties you will be experiencing though.

Fortunately Sjogrens seems to progress fairly slowly for many people, and may you be one of them. Experience will help you to manage your own symptoms and still get a reasonable quality of life but, especially if you suffer from fatigue and muscle problems as I do, you will have to learn your limits and find out how much you can push them and still recover reasonably quickly. Hope this helps a bit, take it gently but get on with life.

[marnie52]

Hi Butterfly54,

How are you feeling? I felt (and still feel) quite alone and frustrated following my diagnosis. People think sj is just a dry mouth and dry eyes and don't understand that although that is what the diagnosis is based on, it is so much more than that. I also have fibromyalgia and thyroid problems, the symptoms overlap so much, I have no idea which is causing me to feel so bad at any given time and strange as it may seem, I find that incredibly frustrating. At the moment my tongue is so sore I can barely talk without pain and am down to eating very soft bland food - my husband tells our friends it's because I swear too much LOL (luckily they know I don't). I live in a fairly isolated part of country Victoria so the likelihood of finding someone close by with the same problem is remote and I am sure many of us are in a similar position so this is a great opportunity to meet others in a similar predicament. Feel free to email privately if you would like to. (You can read about me in my profile).

Please don't feel you are alone in this.

Marnie

[Butterfly54]

Thankyou both of you for your answers,Ihave only just been told I have this a week after being told I have fibromyalgia as well. i am now 58 and I realise I have had this for some time but put a lot on the back burner as I also have

Scoliosis,Osteo arthritis and problems again with my spine from an op that didn`t go so well.So have been treated for chronic non retractable pain for years now.

I have had 3 miscarieges,cant sit out in the sun for long without getting blisters.

One doctor years ago kept sending me for test on ANA bloods for lupus but it was never conclusive,He said I had 5 of the 7 pointers for it.

For here in the U.K he was an exalent doctor but I am now back in Hastings where thing are a bit useless.Having said that I have just been sent a mysterious appointment to see a neurologogist next month which is really quick as we usually wait 3 months.I reckon it`s just to check I have a brain but will ask g.p in the morning lol.

I reckon I got a double whamy fatigue wise like most of you,but have been coping with on illness after another since xmas.

But ho hum tomorrow is another day as the film said (gone with the wind wish I could).

Thanks again and hugs to you both I will contact you Marnie take care love Butterfly xxxx

[butterfly29 in reply to Butterfly54]

Hi Butterfly54 How are you ? I've called myself butterfly29 cos of my Fibromyalgia & my birthday. Do you think this will be a problem or should I change my name ?

[Butterfly54 in reply to butterfly29]

Hi hun,I don`t know Hun I`m also on the fibro site,I`ve been there since Jan this year.Thinking about it I am known on there.

Fancy 2 Butterflies having fibro and SS whats the odds on that lol.

How are you managing.

(((hugs Butterfly54)))))

[butterfly29 in reply to Butterfly54]

Hi my Butterfly ,mine is small b so we should be ok. On the Fibro site I'm my name Leanne so that should also be ok. Since doing research a lot of Fibro women develop SS, men too but more women for some reason. The last week has been hard, I have trouble With back L4 & L5 & sore hips plus fibro flaring. What about you ? ((hugs butterfly29))

[Butterfly54 in reply to butterfly29]

Hi again Leanne I think I replied to your message wrong you will find it under this one.

Hugs Jaynexx

[Butterfly54]

Hello again Leanne,are you here in England or sunny Oz..

SS seems to be picked up when we are diagnosed for fibromyalgia,as they take a lot of bloods to rule out other things.I know I had 8 vials taken.And it was the blood test that showed it.

I thought and(I suppose I am) that I was like my Nana who always had a hanky up to her eye`s and we used to tease her that we made her cry.She was also always tired and didn`t play with us much.

I have had sore eye`s and mouth as long as I can remember,I lost 1 child who was born very prem and had a lot of problems,to cot death and then had 3 miscarrieges one after the other,all at the same time and in the same way.

I also have curvature of the spine,and had L5 removed and L4 is now nothing and spine has fused itself.This has all caused osteo arthritis.But having said all this I feel my problems are more SS than fibro.The exhaustion is crippling and sole destroying.I am always getting urinary tract infections and don`t suffer antibiotics well.Which is very like SS.

How do you do with drugs are you able to take.I have had to come off Gabapentin as I had a very bad reaction on them.I despair of anything that will help and may give up in that department.

The doc has given me eye drops that help,but I have spent £6 on salivex for my mouth.One got stuck on a tooth and broke it Ho Hum.So dentist this week and can tell him I DO brush and floss properly,I have gone every 6 months all my life,but I have lost teeth.

I am also like Marnie and have an allergy to the sun.If spring weather is good,and it was for a week or so,but wasn`t up to sitting in it.I can get some sun,but come june onwards I blister even with high factor creams.

Like me you should ask for a vitD and VitB test done,do you have under active thyroid,that also seems to be a common factor.

Anyway Hun I look forward to hearing from you.

Love and hugs Jayne xxxxx

[Plumcake]

Hi Butterfly54

I was diagnosed with Sjogren's in April this year by a rhuematologist.

First diagnosed as sicca syndrome.

I was prescribed Plaquenil (anti malaria pills) at 200mg twice a day. Took them and felt ok for a few days then wham. I took a walk and came back for my dinner and could hardly get up I was so weak and felt so ill. Had to take to my bed, I was so unwell I had to cancel an op. also my eye sight deteriorated, and the cataract worsened.

I stopped taking them and saw my GP and he said I was right to stop them and said to go for an eye sight test, which I did. He also arranged for more blood tests, and have to go back for further blood tests soon.

so i have no treatment at all for this now.

I also have Fibromyalgia. A series of stressful situations has brought about severe depression and anxiety.

I don't use any mouth gel, just eye drops which I buy over the counter.

Any thyroid tests I have had have all come back normal. But I am unsure that the ranges they use are accurate, having read that someone was suffering for 15 odd years with a wrong diagnosis, and it was thyroid trouble all that time.

btw, i am in the UK.

I'm so sorry to hear your sad story.

love and ((hugs))) Plumcake x

[Butterfly54 in reply to Plumcake]

Hi Plumcake,was your diagnoses of Sjogrens Primary or if secondary what else do you have.This seems to be a swine of a condition.

I don`t see the rheumy again untill July,I was diagnosed with fibro and sjogrens in January,and find it appallingg i have had to wait 6 months to find out whats going on.

I`m sorry you had such a bad go with plaquanil,but I have heard this time and again.

You should be getting eye drops from you G.P,I bought mine from boots for years but they really are not strong enough.

I have hypothyroidism,Ive just had my yearly blood test to check it,also asked for vitamin D to be checked.The doctor laughed but said she would do it,And guess what,it`s on the floor,one of lowest she had seen.

Read up on it Plumcake,it wil make your hair curl.

My hair has been falling out in handfulls,it give fibro type pains if not fibro itself.

What worries me is another illness it can cause(ostemyalits I think it`s called)and that sounds so like me.the weakness in my thighs started years ago,even though I walked my Yorkie 3 time a day and was able to care for myself.I had to teach her to jump up on a bench so I wouldn`t have to go down to her and get stuck for coming up again.

Since about this time last year I can`t walk her anymore and have put myself on the mercy of adult social services.It`s going to cost me £30 for some one to come once a week for 3 hrs and OT are getting me something to help me get out of the bath,bed and higher the loo.

Life is a right bitch at the moment but I will win.

Love and hugs Jayne xxxxxx

[Plumcake]

Hi Butterfly54

the rheumy didn't say what type of Sjogren's I have. He just gave me a leaflet and some printed info on the Plaquenil. Not much use.

I remember you saying about waiting till July. I saw my GP recently and he asked if i had heard back from the rheumy about the effects of the Plaquenil. I hadn't and still haven't heard back.

I have weakness in my thighs too, and pain from the knees up. so squatting to do any gardening is quite hard to manage. Also housework, so the place is looking grubby. I have no one to help at all.

I have just seen a post about Thyroid and Mary sent me this video

youtube.com/watch?feature=p...

love and hugs to you hun xxx

[Butterfly54 in reply to Plumcake]

Hi again,Plumcake,thanks so much for that,I have put a ton of weight on but it happend when I went onto gabapentin and a new drug for depression,the bloated blown up look has gone but try as I might the extra stone just won`t budge and as you can imagine that just causes more depression.

I keep an eye out for Marry`s post as she is really trying to get things done about how thyfoid is treated,And I have signed a lot of he pertions,

Everytime I have mine checked,and it`s been 7yrs now,I exspect to need to go up a dose.

I am going to take the bull by the horns and speak to G.p about it.

I am lucky in having a good one,but having said that I had to give her a booklet on Sjorgrens and also be my own G.P with the vit d problem.

So maybe she will listen to me.

Wishing you well love and hugs Jayne xxxx

P.S what I meant to say is with the level of thyroxine I am on I never lost the weight I had put on,and I was going to weight watchers at the time,but left when the cow said I was just playing at is as my weight went on not off.Hey ho we have to be proactive at times with all this.

And I would have thought your rheumy would have wanted to see you again.

If I really come up against it I will ask for a transfer to either Guys or St Thomases,I don`t know where you are but its worth a try.xxxxx

[Plumcake]

Hi Butterfly 54

I had gabapentin, but again I didn't stay on it. Can't remember how it affected me.

That's way too long between your thyroid tests;7 years? Get it checked asap.

I used to see Prof Davies privately when i had access to my husband's insurance, and he used to give me two injections every fortnight. One magnesium and one Vitamin D I think it was. They cost £200 plus each time.

I lost the private health when I divorced and then went on his books at Guys.

But they kept cancelling my appointments,and i hadn't seen him for about 3 years.

Prof Davies didn't give me any injections under the NHS. And to be honest I felt no worse for not having them. The visits were about 10 mins and he didn't offer any help at all.

As I understand it we are unable to absorb certain minerals and vitamins through the gut with the Fibro, so that's why they gave me injections. How are you treating yourself for Vitamin D, with pills?

My bum was black and blue the first time I had them, and it hurt like hell.

Yes, you would have thought I would have some contact from the rhuemy, but nothing so far.

I live in south East Kent and it is quite a journey by public transport to Guys, a lot of walking through the underground.

Sorry about your bad experience at Weight watchers,not very helpful were they?

Wishing you well and sending (((hugs))) and love from the South East.

Annette x x x