I'm a 34 year old female and I have this disease. I was diagnosised 10 month's ago but now I have EVERY SYMPTOM and now the flu on top of it. I have a awful cough and my nose constantly runs. I have absolutely NO ENERGY AT ALL. And I've been so Moody and grouchy lately. My eyes,nose,mouth is so dry. For 3 weeks I had sores on the side of my tongue. My tastebuds r different now to and my hair is falling out more. Also my back has been hurting is this a side effect for this cause I didn't c back pain anywhere. I feel like I'm falling apart I've beem up all night with no sleep crying my eyes out. I have 3 boys and I'm a waitress they consist of a lit of time and energy that I haven't had lately
Hi Shannon, I can really sympathise as I'm also suffering from the flu at the moment! And I know there's nothing worse than an upper respiratory infection when you've got Sjogren's. So far, I've only got the cough and the sore throat, but I dread it turning into a cold as well, as I know I'll be in for weeks of painful, bleeding cracks inside my nose if it does.
I can only say to hang in there. There's not a lot the doctors can do, other than treat the symptoms, but Sjogren's often goes into long remissions. Mine started when I was 50, raged all over my body for about 15 years then settled down to a few relatively minor symptoms. I'm 70 now, and all I've had for the past five years is slight dryness of my eyes and mouth (except when I've got the flu, which makes everything worse!) stiff fingers on my left hand, especially in the morning, and an occasional attack of Reynaud's syndrome. That's the one - also associated with Sjogren's - where your fingers and toes go white, dead and very painful. Apart from an underactive thyroid - treated with a daily thyroxine tablet - that's about it.
Your tiredness and hair loss could very well be down to an underactive thyroid, as Sjogren's is known to attack this organ. I do think you should insist on getting a blood test to make sure your thyroid gland is working properly. I can't make out from your post whether you're in the US or the UK, but I know the NHS is very mean about giving thyroxine (synthetic thyroid hormone) for an underactive thyroid. I can't make out why, as it's one of the cheapest medications you can find - cheaper than aspirin!
I hope you soon get over the flu. And don't forget that any viral infection can plunge you into a state of depression that can last several weeks after the end of the infection - so try and cut yourself some slack if you can.
I've just turned 33 and been diagnosed since 31. I've recently started getting a sore scab type on the inside bottom of my nose which I wondered what it was as every time I had to unblock it, it would bleed (not as in a nose bleed, more just when I wiped or blew my nose). I thought it was the mrsa back as I unwittingly caught this in 2009 in hospital but have recently been to a dermatologist about my break out of excema for over a year and he said the nose thing is common as it affects the salivary glands/mucus etc. Right now though my knuckles and fingers are blotchy red and stinging. Awaiting Patch Tests as dermatologist thinks I'm in contact with something that I'm allergic to. I did ask if it was a reaction to Sjogren's but thankfully it appears not to be as that would (according to dermatologist) affect the face, possibly produce boils it similar. I did have this on my chin last week but thankfully it's disappeared. I've noticed I am quite easy to wind up in particular at work and when I'm due for and on my monthly cycle. This week even though I'm 4 days into my cycle I have been feeling more calm and haven't taken anything for it so wonder if it's another Sjogren's effect. Felt a bit of a fool the other day when I was forced to go to my doctors because of side effects of iron tablets as I very nearly ended up in tears but hopefully he didn't notice. I said I try to avoid the doctors as feel like I'm always here and I usually don't say everything that is happening (as don't want people to think I'm a hypercondriac) but ever since the Sjogren's appeared I feel as if everything in my body is going wrong, I still think this but in the case of last week think hormones had a lot to do with it, we both laughed it off and it did cheer me up but I seemed to go from ok to emotional again on my way home although now I'm my usual self so think the tiredness was a factor as well. One thing my doctor did say was the secret is up here (as in my head) and to an extent he's right, Sjogren's is not to be ignored and I do feel like my concerns are being ignored by some but Sjogren's is treatable if your on the correct treatment for you. The only time I'd stop my tablets completely is if they were making me worse or if by some miracle I become pregnant as despite what my consultant said, the leaflet on the tablets isn't written for a laugh, it's written seriously and says not to take the hydroxychloroquinne as can affect your baby. I don't know if I'd be able to breast feed but I'll focus on that when the time comes. In the meantime, the important thing is to try and be happy, I'm trying to walk more which I'm finding helps a little. I don't over push myself. I'll update about the skin when the Patch tests have been done.
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