Fibro and Sjogrens

[Janpan7]

Hi all, I've been diagnosed with fibro for 8 years, but for last few months I've felt so much worse, with new symptoms of really painful dry red eyes, extremely dry mouth, dry skin with rashes and dry cough, and increased pain and fatigue. My gp says it's sjogrens, an autoimmune disease, and referred me to rheumatologist.... while waiting for this appt, can anyone share on here what meds etc they take to help etc, as it appears folks with fibro are more likely to get sjogrens than normal population. Any advice appreciated, many thanks. 🙏 😘

[Gigiruth]

Hi Janpan7I have Fibro,Sjogrens and another auto immune condition. I hope you are seen and have more information soon. I had prescription "fake" saliva and tears but I am very sensitive to chemicals and they didn't agree with me.

I have eye examinations yearly and now use gel tears and Hydro drops (red box) I buy these. The hydro has a long shelf life compared with others that have to be used up quickly. That costs more. I buy 3 for 2 at Boots.

I didn't find a fake saliva that I could tolerate but carry a water bottle all the time. I have a different toothpaste as less saliva also affects decay. If you have an optician talk to them. Mine suggested wearing my glasses when I walk in the wind on.my dog walk to protect my eyes.

Stress and more sugar in my diet make me worse. A cleaner diet makes a difference.

Hydrate well but not overdrinking.

I hope you get some relief.

Take care

Gigi

[Janpan7 in reply to Gigiruth]

Thank you Gigi, much appreciated xx

[Alb2]

Gigi has given really good advice. I would just add that I get toothpaste prescribed by my dentist - definitely we are more prone to dental decay due to lack of saliva. I clean my teeth 3 times a day and keep my mouth hydrated with water as couldn’t get on with the artificial spray. It is an expensive pain and nuisance having to have more regular dental checkups and visits to the hygienist but my dentist is great and has a good knowledge of this condition.

I use prescribed eye drops too like Gigi and use glasses to protect my eyes in the wind and harsh sunlight and blue light glasses for computer work. I just can’t tolerate bright light. Good luck with your diagnosis and don’t let it define you😊🙂

[Janpan7 in reply to Alb2]

Thank you Alb2. What toothpaste are you prescribed please,,I'm back at doctors next week. Do you ever need statins to calm it down? Xx

[Gigiruth in reply to Janpan7]

Mine is Colgate Duraphat 5000High fouride. Prescription from dentist.x

[Alb2]

It’s Colgate Duraphat. I take statins low dose anyway as have an inherited predisposition. I do take antihistamines when itchy skin/rashes flare but thankfully this is behaving itself lately. In sun, I wear at least factor 50 as prone to rashes in strong sunshine. I also have hyper mobility syndrome and it’s all linked I think😊

[Gigiruth in reply to Alb2]

Goodness, me too! All of the above. I also dump calcium round the body in soft tissues. In tiny amounts but gives odd results on mammograms. Maybe the same genetic fault.

[Alb2 in reply to Gigiruth]

Am forever coming up in weird lumps and bumps, swollen glands etc that just go of their own accord and appear quite harmless. I think it probably is the same genetic fault!

[Colourpink66]

hi just reading about dry mouth which I get , I recently bought Te Pe hydrating mouth gel I think it was £6.50 from Amazon, definitely helping and easy to carry around and use ,

[Janpan7 in reply to Colourpink66]

Many thanks, I'll give it a try xx