Sjogrens

Have you tried taking 400mg of hydroxychloroquine this helps with my fatigue

Hi Maureen, I can identify with your letter.  I was diagnosed with Sjogrens and PBC in January of this year.  I know I have had it for about 35 years because I wrote to the Sjogrens society in the 80's for info. But moving around and changing doctors nobody joined the dots until now. I had no symptoms that I couldnt manage until I took Urso for the pbc, then all my symptoms came back and I am like you now.  However, Im managing quite well by going off gluten and eating an anti inflamatatory diet,  Im 72 and I find Im not so excited about food these days so it hasnt been hard and the benefits are great. Yesterday I had a French Roll while out, and I could hardly get out of bed this morning, had to cancel all my plans - another lesson learned. Hope this will encourage you to look at your diet.  best wishes Kandypat

 Thank you and all others that write for beeing there

Hi Maureen, Totally with you! I'm 71, have had Sjogren's since I was about 50 but it took 10 years to get a diagnosis, which is about par for the course. I get exactly the same symptoms as yours, but then I suspect a lot of people in their 70s get like this anyway. I know several people younger than myself who don't have Sjogren's but are in much worse nick than I am. I think we have to make some concessions to advancing age. The other week, my landlord's agent came round to fix something in my apartment. He asked if I'd mind his asking how old I was. When I told him he looked genuinely surprised, said: "You're in much better shape than my mum, and she's only 62!" (Though I suspected at the time he might be trying to soften me up for a rent increase!)

My main problem at the moment is that I had a nasty fall when I got dizzy on a down escalator a couple of months ago, and ended up in a heap at the bottom going onto those metal teeth - one of the scarier moments of my life. Nobody had the sense to stop the escalator but two young lads just grabbed an arm each and hauled me off. I'm eternally grateful to them, and was absolutely fine for a couple of days, but then started getting hit by joint and muscle pains all over my body. Most of them have gone now, but I've been left with a severe flare-up of RA in my left thumb joint, which is affecting my grip and making it difficult to do all kinds of household tasks (and I live alone).

On the bright side, I've always found that most pains of this kind get better if I wait long enough. I'm also taking a combination of homeopathic remedies I was prescribed when I had my first (and most crippling) attack of RA when I was only 35. I'm not on any special diet, though interestingly I find I've been going off wheat products for about 10 years now, and rarely eat bread or breakfast cereals these days. And cakes and biscuits aren't a temptation since I've never had a sweet tooth. Apart from that, I just avoid the main triggers for my RA, identified by the homeopath 35 years ago - chocolate, coffee and rhubarb. Unfortunately I love rhubarb! I also eat 6-7 portions of fruit and veg (but mainly veg) per day and oily fish at least once a week, as well as taking an omega-3 fish oil supplement every day. I've been taking this religiously ever since I hit the menopause 25 years ago. I make sure I get regular exercise - by walking, like you - but only up to my limits. I sometimes get a pain in my knee, so on those days I limit myself to just a 15-minute walk. The trick is to keep doing enough exercise to keep your joints flexible, but without damaging them when they're inflamed. Sounds like you're doing exactly the right thing there.

I suspect part of the problem is our modern attitude to ageing. We think we're still supposed to be running around like spring chickens in our 70s, whereas just a hundred years ago most of us would probably already be dead by now! I remind myself of this every time I get a bit frustrated by my limitations. There's nothing wrong with accepting our limitations, as long as we don't let them totally take over our lives.

I'm so sorry - I'm vaguely familiar with this disease after reading up on auto-immune conditions when my son was diagnosed with Coeliac. My husband, aunt and sister may not have Sjogrens, but they have very dry eyes and I can only imagine how you must suffer.

Reading your post, I have to wonder if you have Coeliac Disease, too. Please don't eliminate gluten from your diet, but rather speak with your doctor and get the blood test for it. Auto-immune illnesses tend to come in multiples. You could have rheumatoid arthritis or coeliac disease or perhaps another condition which is complicating your sjogren's (and your life). Knowing if there's another problem may point to another remedy of some kind that can help!

I have low B12/Pernicious Anaemia and that brings on fatigue like you mentioned. It's an awful way to live!  You may want to see about your B12 levels, maybe iron and other levels as well, too. Hugs to you, Maureen!