Sjogren's Syndrome: I know many of you... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Sjogren's Syndrome


I know many of you have this with Fibromyalgia. The thing that has made me wonder is because of all the dental problems I've been having although that may be fixed when they extract a tooth which is very near the maxillary nerve and sinuses. Also, because I have hyperhidrosis (one of my worse symptoms) I need to take meds which do dry the mouth so I don't take them every day.

Do you think I should flag it up with my GP and ask for a referral to a rheumotologist? I'm going to wait until my teeth are sorted first!

Thanks x

18 Replies

Hi , I think I might have Sojerns as I have many of the symptoms. I was diagnosed with fibro. three years ago but I think I may have this. How do you get diagnosed with this. What would be the advantage of another diagnosis.

Take care of yourself


in reply to Golfer15

Hi David. I think you get diagnosed by a rheumatologist. What would be the advantage? I think same as being diagnosed with anything - you know what you're dealing with and accounting for unexplained symptoms. SS is recognised as an autoimmune illness whereas FM isn't generally.

in reply to FoggyMoggy

Thank you, I will speak to my GP soon.


Just awful for you... I have Fibro but thankfully have been spared Sjogrens ... my sister has it and I know she has dental issues due to producing little saliva.

My sympathy and kind thoughts to you

in reply to bosscat

Thanks bosscat! I've not been diagnosed so maybe I don't have it - I was just wondering. Love the name, by the way. Loved boss cat :)

What are the symptoms of sjogrens as my lip biopsy came back inconclusive. my immflamatory rate is 72 and I have been put on steroids for 2 months. I am on gabapentin aswell. I was on steroids when I first saw rheumatologist and felt like a new woman until I was tapered down to 10mg. tapered 5 mg per week for a month. I have just been on holiday and feel like shit. nothing new when I have been away and fatigue getting so much worse, struggling to wake up in the morning and force myself to get up. so down since I have been back from holiday. started steroids in Sunday. xx

Well, dry mouth and dry eyes, dental problems, fatigue are some of them. I've not had any tests though. Sorry you're feeling so awful, hope you'll feel better soon, mandypandy x

Hi Mandypandy1969 , have they told you why your inflammation is up and youre being put on steroids , as you know steroids aren't given for fybro, so there must be something else going on

no haven't been told, steroids are for sjogrens as lip biopsy came back inconclusive. I think sjogrens maybe involving inflammatory rate but not sure. xx

Right , so they dont know if it's Sjorgens yet giving you steroids anyway? If your inflammation is up it could be lots of things, RA which I have , or polymyalgia are just two, did the dr give you steroids, maybe you should ask to be referred back to the rheumatologist to find out exactly what's causing the inflammation , take care

The rheumatologist prescribed them to me. He said if they help he will put me on a permanent medication which I have a leaflet on but can't remember what it is called lol. My g.p. Mentioned polymialgia but then he said I was too young. I am almost 50. I don't think rheumatologist knows to be honest. When I first went to see him, he put me on steroids as he thought I may have lupus then got put on Hydroxychloroquine which had awful side effects and made me feel worse anyway. Saw another rheumatologist who said I had fibromialgia. Had lip biopsy which came back inconclusive. Was put on gabapentin which don't seem to do anything. I wasn't on steroids obviously with gabapentin the first time and felt like a new woman. This time, I feel dreadful. I have just been on holiday which wipes me out for a week or two but steroids I had first time worked same day. I am totally confused what's going on with me as I know imflammatory is not fibro related. Sorry for gabbling on. I go into tangents. Xx

Oh dear, youre not gabbling that's so bad, if steroids make you feel better though there must be something that's causing the inflammation and the steroids are helping that, I hope they can sort it out soon, good luck and take care

I don't know if they are helping or will help. I am keeping a diary while I am on them. I would have thought I would have been sent for blood tests after the course but not been asked to ask my g.p. to get immflamatory rate tested again. got to see rheumatology nurse October 26th to see how I am doing. xx

is high immflamatory anything to do with it. x

That can be to do with lots of things x

Any suggestions to what it may be. xx

I think several autoimmune illnesses show inflammation. I have had borderline high reactive C protein which is supposed to indicate inflammation but trying to find out what it is is another matter. I think it can be RA but a number of things.

doesn't r.a. on hold joint pain. I do have burning in my fingertips and thumb on my left hand and my joint bones crack a lot but not painful when they do. xx

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