Primary Sjögrens anyone?

[Matilda7]

Have just had my diagnosis of secondary Sjögrens changed to primary. Would be great to hear from others, in the U.K. especially, living with this debilitating multisystem autoimmune disease.

Or maybe other countries are ahead of us? I've certainly found my local rheumatologists have been very uninterested...hence the misdiagnosis...I was originally diagnosed in 1980, long before it was even recognised as autoimmune, and told it was secondary to the RA, which was diagnosed in 1978.

Am finding it increasingly difficult to bear. The neurological complications, being invisible, are so difficult to explain, and they are becoming more and more difficult to live with. They didn't rear their ugly heads until 2005, but are now much more of a problem than my joints, which are the only things my local rheumatologists are interested in.

It's been great being part of the NRAS forum, I've had so much support. But there is only an Australian forum for Sjögrens. So I'm feeling very isolated and would dearly like to be able to talk to others about the neurological problems and what, if anything, can be done for them.

Thanks.

[helixhelix]

Twitchytoes....hopefully she'll pop in soon, if not message her?

But we'll still be interested in you, it is after all part of the auto-immune spectrum so many similarities, so don't feel excluded from here.

[Matilda7 in reply to helixhelix]

Thanks HH, yes we are already in touch. Just wondered if there was anyone else...

And I'm not going!

[helixhelix in reply to Matilda7]

Good, and good...

[EmmaS-NRAS NRAS]

Hi Matilda7,

It might be worth getting in touch with the British Sjögren's Syndrome Association (BSSA) bssa.uk.net - they have a Helpline on their website and can provide you with more information.

Best wishes

Emma-NRAS

[Matilda7 in reply to EmmaS-NRAS]

Yes, I'm already a member and get their newsletter. Thanks.

I also tried a local BSSA support group but they were only interested in talking about their dry mouths, not a major problem for me. Tried to change the conversation to neurological problems but was met with puzzled looks.

[Matilda_1922]

Hi Malda7

Can you tell me what symptoms you have experienced with sjogrens

Thank you in advance

Matilda

[Matilda7 in reply to Matilda_1922]

Started with dry eyes in 1980. Not too big a problem. Two hourly eye drops for life.

Then in 2005 my skin became hypersensitive. Have to choose my clothes very carefully. Lots of things I can't wear. Still not too much of a problem.

But over the last 12 years it's got worse and worse. Now I have burning feet and legs, Raynauds, hypersensitivity to noise, lights, temperature ie either too hot or sometimes too cold, flush frequently, overheat at the drop of a hat, have constant visual disturbances, constant headache...

It's all wearing me down. I have to take an electric fan with me if I'm going to be with a group of people indoors, can't go to theatre or cinema, etc etc, have zero energy. And my rheumatologists just say it's a peripheral neuropathy connected to the Sjögrens...if we control the RA it should help the Sjögrens.....talk to the neurologists...who say take pregabalin....might mask the symptoms..but no one, till I suggested seeing a specialist, has considered it might be primary Sjögrens, which needs a different approach apparently.

[Matilda_1922 in reply to Matilda7]

Hi matilda7

What you have described is similar to what I'm experiencing which has increased over the last 2 years since diagnosis of rheumatoid arthritis.

Matilda

[Matilda7 in reply to Matilda_1922]

Sorry to hear that. Hope you're coping with it better than me? What sort of things are you trying and does any of it help?

[Matilda_1922 in reply to Matilda7]

I'm using eye drops frequently during the day.

Do not have anything for shooting pain in my lower limbs this is usually at night and GP says the hot and cold spells I have is the menopause although it began 6 years ago and these symptoms started in the last 2 years.

[Matilda_1922 in reply to Matilda7]

I take amitryptilin for the nerve pain in legs which was given to me after a dose of shingles in early 2015 and just continued to help with sleep as well.

Apart from eye drops nothing else as it's not been diagnosed but I'm sure I have it as I basically have all the symptoms but no one listens to you.

[Matilda7]

Hope you don't develop any of the other problems / symptoms I have!

[Hidden]

I so relate to everything you are experiencing - all symptoms you describe tarry with mine as you already know. It's the loneliest feeling in the world to have a completely invisible and intangible sensory storm going on under the skin - like a kind of madness I often feel. I'm in the middle of an electric storm myself.

For purposes of raising awareness here, my vascular doctor explained to me that the fatigue of Sjögren's (primary or secondary - experts now say that this distinction is irrelevant other than for trials or research purposes) is so awful because our blood is always more concentrated and, unlike other rheumatic diseases, there is no treatment that targets this kind of systemic inflammation yet. So we just have to live half lives and make the most of the few wakeful hours we get. We are battling inflammation 24/7 and there's no treatment to effectively reduce this. Our dryness can feel like the tip of the iceblock - or relatively manageable but the truth is that all living things require moisture in order to function, let alone flourish. Dryness of the eyes and mouth, even seemingly mild dryness, triggers the parasympathetic/ autonomic nervous system to overreact and this in turn causes the body's regulatory function to become dysfunctional - this is the gist of neuro Sjögren's I believe.

Can I suggest that you do two things. The first is that you join the Lupus UK and Australian Sjögren's and Scleroderma & Raynauds communities and post on there because there are quite a few wonderful people with primary Sjögren's on these communities and they will respond supportively so you don't feel so alone. I post a lot on Lupus UK HU and am meeting someone I met on there with primary Sjögren's for the first time, after my one off consultation with Dr P a week on Monday, for some lunch.

Hoping she wil come here soon - like me she mostly uses Lupus UK HU.

My second suggestion is that you write/ email Heather at BSSA and explain how isolated you feel with these neuro symptoms and request that the BSSA board of trustees, which I believe includes Dr P, start a BSSA HealthUnlocked community. I and a few others from the Lupus UK community, along with their admin, have all agreed that this would be really helpful and a great way of recruiting new members for BSSA too - but so far they maintain that their staff cannot admin an HU community effectively because the charity is too small. I think they had a bad experience with Facebook and now avoid social networks - but still HU isn't Facebook!

The very fact that we have to turn to other HU communities - in Australia or other related charities (although I am assured that the LUK admin and other members don't mind) makes me feel even lonelier sometimes. I think your new rheum and the BSSA board need to know this. I have told them already several times but I think they need more of us to say it - power in numbers and all that.

Maybe NRAS HU admin could also recommend this suggestion to BSSA as I'm sure this would help. But meanwhile there are many of us floating about in cyberspace with very similar presentations of Sjögren's and I promise that you aren't alone. The BSSA forum is hopeless I agree - apart from anything else it's £25 to join, only accessible to (UK)members, no email alerts to replies or posts and you have to login, stay logged in using complicated system and password not of our choosing and ..well I've long since given up to be honest!

Meanwhile please PM anytime you need someone who has very similar symptoms to yours for a Sjögren's rant.

Hugs, TT 😎