Flares?

Lily you need to write a book on this. Seriously. From your own perspective.  Then send me a copy. You have the knowledge and experience and so many of us are lost and scared. I have so many questions and such. I just keep reading the stuff you write. You so organized with it. 

Thank you for your kind words but I think I'll pass on that one!

There's plenty of info out there on Sjogren's. It's best to go on authorised medical sites, like the American Rheumatology Association, Mayo etc. In fact, even dear old Wiki gives a good digest of the information from medical sites. Once you've done a bit of reading, you'll see that for the majority of sufferers, Sjogren's isn't a life-shortening or excessively disabling condition.

I've had the symptoms for 22 years now - or longer than that if you count a sudden, unexplained attack of severe rheumatoid arthritis I suffered around the age of 37, nearly 15 years before my first Sjogren's symptoms.

It hasn't had a major impact on my life, apart from the odd disturbed night due to tendon pains or the tingling in my hands and feet caused by peripheral neuropathy. The dry eyes are more of a nuisance than anything else, and the underactive thyroid is easy to treat. I've been told by my doctor that I have to take the late-developing asthma seriously as it could progress to COPD (even in a lifelong smoker) but that seems to be under control at the moment.

I honestly think the most disabling it ever got was a year or two ago, when I went through a period of about six months where the tendons in my right elbow and left thumb were inflamed at the same time. This really made routine daily activities difficult for a while, especially as I live alone, but I managed to find ways round it for the most part. I learned to use my left hand to brush my teeth (couldn't hold my right arm in a raised position while gripping the brush); took to using the nutcrackers to unscrew bottle tops, while taking wider-necked jars to the neighbours to open; gave up trying to peel potatoes and just scrubbed them instead; and didn't even try to turn my matress for six months. It was also a wonderful excuse to do even less housework than I normally do!

I remember getting a bit low at the time, but whenever I get anything wrong with me I usually have this conviction it will get better if I wait long enough, and it always does. (This doesn't apply to lumps or unexplained bleeding, of course.)

I think my general health and fitness standards are about average for a 73-year-old. I'm not one of your roller-skating, tennis-playing, marathon-running super-seniors, but I doubt whether I'd ever have been one of those anyway, even without the Sjogren's! There are probably quite of few of these gray panthers out there who suffer from Sjogren's as well, but I don't suppose they have time to post on forums like this one.

I look after myself and my apartment normally, walk about an hour at least 4 days per week, and do a 30-minute exercise programme at home 4-5 days a week - about half-and-half aerobic and flexibility. My BP, weight and blood sugar are all within normal limits.

Since retiring from paid employment at age 66 I've done a fairly demanding voluntary job in a mental health centre, which I thoroughly enjoy. This calls for listening skills and administrative abilities rather than physical activity, but I do have to do a couple of all-night on-calls per month for clients who need to talk, which can be quite taxing. I have a modest social life, but enjoy spending time on my own too. I cook for myself every night and - oh yes I forgot - drink slightly above the recommended limit of wine! But my doctor - who I suspect quite likes a drink himself - says he's prepared to turn a blind eye as long as my liver enzymes remain normal.

I'm not for one moment suggesting that SS sufferers who can't do all of the above are in any way slacking. We all have our different symptoms, with different severity. A few people also go on to develop other autoimmune conditions in the same connective tissue group, which can make life difficult. And the unfortunate few who develop Sjogren's early in life can suffer more, as there's more time for the disease to develop. (Most of us get our first symptoms around age 50.) But there's no need to assume that a diagnosis of Sjogren's will automatically mean unbearable suffering or a major loss of quality of life.

I just really entered it. Yep age is on target. I would love love for this to calm down. Its dried up my sinus but caused weird ear issues in the process. I was just adjusting to dry eyes. Grr...The RA did say it can come down in a few months. All my hope floats that this will calm itself. Geez i was busy living life worrying over other stuff and this just flew in from left feild for me. Maybe not completely blind sided i think i can look back and fit the peices here and there but it was always was quick and passed. Now its been a few months. So im hoping. 

I think the relatively fast onset may have been a problem for you, not giving you time to adjust to the condition. Paradoxically, it may also be the fact that you received an unusually early diagnosis that might have given you something to focus your very natural anxieties on. Most of us had to go through years of uncertainty, and sometimes thoughts that we might be imagining the whole thing, before being diagnosed.

Looking back, I suppose the onset of mouth dryness was the only sudden symptom for me (and the first). That one did seem to come from nowhere - lips and cheeks sticking to gums, and cracks appearing at each corner of my mouth that opened up painfully and bled when I opened my mouth to eat. I saw several dentists plus my GP, but they all said it was old age, allergy or just shrugged their shoulders. My GP insisted it was allergy and ordered all the specific (and expensive) anti-allergy tests, which showed up very little. As far as I can recall at this remove, she didn't do the essential inflammation markers though. I knew all along it wasn't allergy. I'd had Oral Allergy Syndrome since my early teens, long before it was actually called that, and the oral symptoms of allergy are completely different.

I remember getting very miserable and frustrated about this seemingly mysterious condition, wondering whether I was always going to be like it. Interestingly, I didn't perceive it as mouth dryness at the time - and neither, apparently, did the doctor and the dentists. It was only when the other symptoms started appearing that I put the pieces of the puzzle together.

Mercifully, the worst was over after about six months, when the sores at the corners of my mouth finally healed. The thing about my lips sticking to my gums subsided after another six months. The mouth dryness has never come back in the 20-odd years since then. Well, not in that severe form anyway. My other symptoms arrived much more slowly and less severely over the next few years, so I guess I just assimilated them and learned to live with them, partly accepting my GP's explanation that it was the early onset of old age.

It was at least five years before I started researching my increasing ragbag of apparently unrelated symptoms, mainly dry eyes and the onset of peripheral neuropathy at that time. (My GP said both of these were due to old age too.) Although I'd worked as a nurse for 10 years in the 60s and 70s, I can't recall learning much about autoimmune conditions. We touched on Hashimoto's thyroiditis and SLE, and I have vivid memories to this day of caring for a woman in her late 30s dying horribly of scleroderma, when I was a student nurse more than 50 years ago. But the first time I recall hearing of Sjogren's was on the internet in the early "noughties".

It wasn't till 2005, 10 years after the onset of first symptoms, that the sudden arrival of Raynaud's syndrome in the fingers of my left hand clinched the diagnosis for me. By sheer serendipity, I had a spectacular attack while actually in my GP's office, and was able to flourish my handful of dead-white fingers in her face. She still maintained it was old age, but she did finally order the full range of tests for anti-inflammatory markers. I ordered a copy of the results for myself, but it was another six months before I could persuade her to actually utter the word Sjogren's. In retrospect, I think she was afraid to give me a firm diagnosis, for fear it would focus my anxieties.

Not sure whether all this will be of any help to you, apart from the almost total and (so far!) permanent disappearance of the dry mouth symptoms. I think the main message is that you need to give yourself time to get used to accepting and managing your symptoms, which are highly unlikely to cause serious disability. And there's always the medication route if that's what you want. As I've said before, we all make our own decisions. I think you said in another thread that you had an excellent rheumatologist who you trusted. Perhaps it's time to discuss medication with him if you don't want to wait for a possible remission?