Overwhelmed

ferboz

Hello everyone. I have just been diagnosed with Sjogrens Syndrome. I also have osteoarthritis. I just feel overwhelmed by it all. The consultant was very robotic in my opinion..( I didn’t know what to expect) and once she said it wasn’t lupus but Sjogrens I sort of went into a trance as never heard of it ( my GP thought it was lupus so I read all about that!) my consultant didn’t really give me any help how to manage .. just a leaflet ( which led me to here) and also a leaflet for pain meds. I really don’t know what I expected or even expect but I am hoping by being a member of the forum I can move on with my diagnosis amongst friends . Thankyou for reading 🙂

CarylW

Hello @ferboz and welcome to our online forum. You will find our members will offer ideas and help from their own experience. I hope you find this useful.

You might want to have a look at our website for information, and I am posting a link below which I hope will be a good start for you.

https://www.versusarthritis.org/about-arthritis/conditions/sjoegrens-syndrome/

Do keep in touch, and llet us know how you are getting on.

Best wishes

Caryl

Hermione

Hi ferboz and sorry to hear you have joined the Sjogren’s community. I’ve had SS for several years and also have rheumatoid arthritis, osteoarthritis and osteoporosis (among other things!). The best advice I can give anyone newly diagnosed is to join the BSSA (British Sjogren’s Syndrome Association) – https://www.bssa.uk.net. They are shortly changing their name to Sjogren’s UK and getting a new website as the current one is a bit clunky. There is a members only forum on the website which is full of helpful advice, tips and general support. They are a friendly lot and I’ve heard the BSSA phone helpline is really excellent. They publish info sheets covering all aspects of Sjogren’s; they also have regional support groups where you can meet up in person, if you want, with others. I’m a regular at my local group and find it incredibly helpful and supportive to get together with people who genuinely understand. Everyone with Sjogren’s has a unique story and different problems to deal with, so you are bound to found someone can help with any aspect of this little-known condition.

The common theme with all of us is trial and error. Because it’s a “rare” condition, you may find that GPs and even rheumatologists are a bit hazy and you may get fobbed off because the clinician may not really know much about it. If you find a good specialist who is knowledgeable and empathetic you will hit a jackpot, though. Dentists and oral medicine clinicians often have more understanding of Sjogren’s because they will be concerned about the effect of dry mouth on your dental health. Opticians and ophthalmologists will be able to look after your dry eyes. You should now get eye drops for dry eyes (make sure these are preservative-free) and saliva substitute gels/sprays on prescription – don’t accept anyone telling you that you have to buy these over the counter; with a diagnosis of SS you are definitely eligible to have them prescribed. Some people find sugar-free chewing gum is better than saliva substitutes, but my go-to product is Xylimelts pastilles which contain xylitol and because they stimulate what natural saliva you are still able to produce, are better than gels/sprays which just get swallowed instantly. I am not sure if I am supposed to recommend a supplier on this forum but I get them from a sleep charity which can supply them VAT-free, who are really good. The other thing you could try for severe dry mouth is pilocarpine tablets (prescription only) but they do have significant side effects for the first few months and not everyone can tolerate them. I persevered and now find them OK as they take the edge off the dry mouth symptoms.

Please do post again if you have any more questions or are suffering. Sjogren’s can make you feel absolutely desperate (I’ve been there) but you are really not alone. There are others who have lived through the experience of diagnosis, the struggle to find help and advice, and we are all more than willing to support you. Good luck.

ferboz

hello hermoine Thankyou d much for taking the time to reply. I am still all over the place and my husband said you know now so don’t stress and panic.. I know he is right but I can’t help feeling overwhelmed. I don’t feel well and feel so tired..& that’s not me.. my husband even said I manic.. so positive part if the day then I come crashing down. I suppose I feel I am overthinking it all and am annoyed I didn’t discuss SS with my consultant as I didn’t want to be a burden to her .. I knew she was busy.. but all it’s done is left unanswered questions.. that’s why I joined here.. I will gave a look at the SS society you mention.. I am swaying more blood results and also x ray to get a plan going forward.. thanks again.. I do appreciate your words!