Sjorgrens syndrome????: Hi I have not... - Fibromyalgia Acti...

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Sjorgrens syndrome????

NB2014 profile image
5 Replies

Hi I have not posted for a very long time now so here it goes I have been suffering with Fibro now for approx 3 years however over last year things becoming much worse with new symptoms appearing ! My pain consultant has advised that I get re referred to my rheumatologist - was wondering if anyone else does get difficulty swallowing with throat closing, blood blisters and ulcers in your mouth which makes your mouth so sore Aswell as the extreme fatigue exhaustion and whole body aches so more with stiff joints??? I am really wondering if when I get these bad flare ups that it is Sjorgrens syndrome which can be linked to IBS which I've had for approx 20 yrs Aswell?!

Does anyone out there get this Aswell and is it linked to Fibro ??? Would appreciate anybody's thoughts on this. Xx

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NB2014 profile image
NB2014
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5 Replies
B2WC profile image
B2WC

Hi There,

Good morning, I do not tend to respond unless I have the same experience, but what you have there is just the like wise experience of what I have always been for the last 10 years , it is true it is getting worse with hard to swallow and aching the whole of your body from head to toe, I ended up becoming a housebound and have to give up my sales job, however, about 5 months ago I started detoxing, drinking plenty of water (2 - 3 lts per day) without fail, taking supplements such as selenium, magnesium, Vit D, accupunture , massage and alternative medicine, then also drink a raw beet root juice every other day..after 3 months it seems I am getting better sleep and reducing my pharmaceutical treatment tablets each week, and also i start to walk 10 minutes each day..., but make sure you discuss this with yor gp..but for me..a healthy and natural way is most helpful ....

panda60 profile image
panda60

If you think you might have Sjogrens then it is worth being tested for it. I have mild Sjogrens and although there is no cure there are treatments which can help alleviate the symptoms.

Regnofibro1 profile image
Regnofibro1

Not to long ago my gp sent me to specialist. The result was that my difficulty with my throat was chalked up to Fibro. I have had it so long and it seems to be still coming out in different ways. Truly hope that you find relief someway.

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read this and I sincerely hope that you can find some resolution and relief to these issues. I do get problems with swallowing quite frequently myself and it is very unpleasant. I would constantly see your GP to discuss the issue to keep them up to date with what is happening for you. I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

MariLiz profile image
MariLiz

Hi NB2014, I get the blood blisters in my mouth, and have found they are worse if I miss taking my daily multivitamin. Have you ever had your levels of B12, ferritin and folate tested? I have B12 deficiency along with fibro and underactive thyroid, so I really don't know which of these cause the blood blisters. Extreme fatigue and exhaustion also accompany all these illnesses, plus the body aches and pains, dry eyes and skin. Going to see an endocrinologist next week to re-examine thyroid results, hoping for some improvement. Best wishes and hoping you get some help MariLiz

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