Sjogerns Syndrome....?

[RhiRhi]

Hi all,

Hope you're all ok and having a good week?!

I'm rather confused, been told I may have Sjorgerns Syndrome now which my doctor says trumps Fibromyalgia so got new pills to try.

Does anyone else have Sjorgens?

X

[Hidden]

I do RhiRhi but I have to say it hasn't given me much more trouble than the Fibro does.

It can cause very dry eyes and mouth , which has been the worst for me as my eyes always feel gritty and sore and I have trouble swallowing food . Other than that I've found the symptoms mirror Fibro with perhaps a little more joint pain.

I've not found any particular meds that work , but I have stomach problems so I'm limited as to what I can take.

Hope that helps.

Hugs

xx

[RhiRhi in reply to Hidden]

Thanks for your reply Helen. So it's worse than Fibro? What exactly is Sjorgens? tried reading on line but so much info, can't take it in? Sorry if I'm being a pain x

[karenhaston in reply to Hidden]

Helen.. I have been told I pos have fibro as have s many odd pains and how it changes etc. I have had many meds to help the so called fibro but no joy - I ache veryday, mostly shoulders neck and so much in both hips. I do suffer from severe stomach issues that are always with me, sometimes more than most. I often describe the stomach as feeling like I am being hooked up by a huge hook - The stomach issues and the constant pain in the hips etc.. like all on here it so often beats me and I can't cope some days.... I am seeing a specialist at the hospital on Monday, he is an arthritis doctor.. Three years and been told SO many things... Oh to have a FIXED answer??? )0:::

[Hidden]

I wouldn't say it's worse than Fibro in most cases , mine is primary ( secondary Sjogrens is caused by something else going on such as Lupus or similar ) and not too bad. It's a disorder of the immune system , so basically your body fighting itself .

One thing to take care of is your teeth , make sure your dentist knows you have it as you may need more frequent check ups to dentist or hygienist because it can cause tooth decay , and ask for some eye drops to avoid corneal ulcers by keeping the cornea wet .

It doesn't really cause me any more problems than that apart from some stiffness in my knee joints , it's normally diagnosed by a salivary gland biopsy or at least that was what I was offered , but an eye litmus test can give an indication of likelihood, so if you haven't had those done it may be an idea to ask to be referred for a definite diagnosis .

Hugs

xx

[RhiRhi in reply to Hidden]

I have braces at the mo as waiting to have an operation on my jaw, have an appointment with orodontist next week so best mention it then. Hope it doesn't stop and or delay op!

No eye test or salvair test, had blood tests but they came back negative but he said you can still have it even thou blood tests didn't show anything?

Thanks for your advice and help. Hope you're ok x

[Hidden]

I was told primary Sjogrens wasn't that serious Lynn by my rheumy . Is that not the case ?

If it isn't, I'll be asking to be referred back . I was diagnosed around 6 years ago and have only ever been offered eye drops and mouth pastils , along with mild pain relief.

[Butterfly54 in reply to Hidden]

I was told Helen by my G.P that primary or secondary need a careful eye on them.

But still waiting to see rhuemy aftrer being told over the phone in january that I had it.

Must admit that I`m fingers crossed that it is primary,but my g.p before one I have now was convinced I have lupus but ANA bloods always came back just under the reading he wanted.

I do have a lot of lupus type symptoms,but I`m looking on the bright side.

Love and hugs Jayne xxxx

[RhiRhi]

Hi Lynn, thanks for your reply.

It's mad how so many Syptoms cover so many conditions and people can get misdiagnosed due to this. Sounds like your very lucky having the dr that writes about the condition.

Got tablets to try so hoping they start working.

Thanks again for your advice and help, hope you're ok x

[Butterfly54]

If you read up on sjogrens primary or secondary can go on to cause problems with certain organs,

I have made my g.p put sjogrens at the top of the list of things wrong with me, as too much can just be thrown in the fibro bucket,when you may actually be suffering new symptoms of sjogrens.

So in the great scheme of things sjogrens and hughes are more important.

Fibro is not an inflamatory promblem but the others are.And yes I have found that most people who have these auto immune problems also have fibro.

Love and hugs Butterfly54 fellow sjogrens sufferer xxxx

[Hidden]

Sounds like you've had some excellent info Lyn . My thyroid tests were normal , but I have been told the basic blood test doesn't pick up thyroid problems necessarily , and also that borderline results aren't always read correctly .

I was recently told it wasn't possible I had coeliac because I wasn't thin enough ?

I tested positive for Sjogrens but apart from an annual liver screen I don't have any other checks done on my organs . My new GP in fact seems doubtful that I do have Sjogrens as he says my blood markers don't show any sign of an inflammatory illness , even though my rheumy diagnosed it.

It's all confusing .

xx

[Hidden]

I think I need to have some more tests if I can just get my GP to refer me to rheumy. So far only neurologist to diagnose FMS. I am hypothyroid and had a great specialist in Brighton who had me on T3 and T4 but you are so right Lynn about GPs only diagnosing on test ranges. I was told by a naturopath who was also a medical doctor that I was hypothyroid years before I crossed the line required for me to be treated here. The only other test I've had was for rheumatoid factor but although it was positive, I was told that almost everybody is so it didn't mean anything.

Thinking of going back to square one and looking for a GP in the local area with an interest/expertise in ideally fibro but rheumatoid illnesses would do. My current GP didn't even know the local rheumatology clinic runs a fibro clinic - mumbled something about them not taking referrals and just passing people on to pain clinic. Fed up feeling like a nuisance when really I am driven to desparation by pain and fatigue and really feel like giving up.

Moan over, whippet x