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The Australian Sjögren's Syndrome Association
1,814 members569 posts

sick of being sick

I was diagnosed after having my second baby in 2000, 14yrs ago. first with fybromyalgia, then lupas then sjogrens. it started with my feet swelling and a red, burning, itchy rash from my feet up to my knees, it looked like socks, now its all over, this would only happen if when I went out dancing or to dinner, which made me think I was allergic to alcohol. eventually after lots of tests, came the results. as the years went on, so did more symptoms and medication list. its a funny sickness, because u dont always look sick. I always worked in demanding jobs, in order to provide for my 2 sons. then after the first couple of years I would end up hospitalised at least twice a year. doctors said my body was deteriorating from the inside out. we are all affected differently, a list of my quirks are chronic fatigue, chronic pain, incontinence, bowel problems, seizures, rheumatism, migraines, severe dehydration, dry eyes-skin-woman bits, my gums flare up causing my teeth to be removed, painful body spasms causing sweating, convulsions and breathlessness, tight chest through the night, insomnia, muscle weakness, blurred vision, short term memory loss, inability to speak properly, light and noise sensitivity. dont get me wrong, these arent all at the same time. each day is different so I dont know until I wake up, what kind of day im gonna have. sometimes 1 minute im feeling good then bang I cant function. my current meds are plaquinal, celebrex, iron tabs, somac, zoloft, dothiapan, topomax, lyrica, only when needed (predisolone). I almost forgot, early menopause. but I still smile and keep positive, everything else, I do in moderation, and thats ok, for those who think im just lazy and full of excuses, they arent in my life anymore an thats ok too.

4 Replies

Hi... it sounds like you need to look and see if you have Hughes Syndrome (Antiphopholipid Syndrome), many patients how have this also have Sjogrens and Thyroids problems, (often hiding and wrongly labelled as Fibro... also some also have Lupus. To get a diagnosis the blood tests are cheap, with a doctor, but you do then need somebody who is an APS specialists. There is a list of such people across the UK, and if not in the UK often people with the disorder can give you local knowledge. There is a forum on HU, many members on here are also on that forum and vice versa. Hughes Syndrome Foundation on HU, also here is the charity website look up blood tests and also symptoms.. some people know of the disease as sticky blood! hughes-syndrome.org/

MaryF x

1 like

Thank you...


I am so sorry and so can relate. I have all the same symptims amd a few more. Most times I get half your symptoms all at the same time and like you said. As fast as it comes on bang then will disappear the same way. Everday is different. I have Lupus, Sjogrens, Fibromyalgia, Celiacs Disease, Antiphospholipid Syndrome, Raynauds, Osteoarthritis and Dengeneratuve Disk disease. I started with Lupus 40 years ago. I am sick of being sick and in so much pain. I am tired of being so tired. Drag myswlf around. Every thing is worse. As you said deteriorating from inside out. My pancreas failed, liver damaged, adrenal glands u sufficient, macular degeneration, internal inflammation off the charts that I am at high risk for heart failure. C reactive Protien off the charts as well as my lupus activity and so much more its too painful to say. I know how you feel and you are young. I am 50 and so tired of new diagnoses, doctors all my life and being my life. I dont have a life. Cant plan anything because more than 90% of the time I am too sick. Friends dont understand cause we look ok. I just wanted to say you are not alone. Funniest thing is we all cant sleep bad insomnia, sleep aid barely work but for a few hours and uncomfortable sleep yet we are so tired cant sleep or rest and thats the most important piece to healing. Healthy people need to sleep to rebooy mind and body to stay healthy yet we need it to heal and we cant. Crazy diseases. Wish there were more answers and much more awareness cause I am tired of family and friends who never heard of lupus or sjogrens and dont understand what auto immune disease is even when you explain and then tell them you feel like you have something eating away at you and they dont understand nor care too. Yet someone with MS whuch I know how awful that is as my coworker has it but everyone sympathize with her cause of their awareness. She deserves it yes and sympathy is not what I want and no one at work knows Because I have worked other places and it was tiring explaining rashes, limping or whatever they saw that looked odd and when asked I just gave up and lied. Now I keep it to myself and when asked to do things I lie and say I cant cause after a days work you never recover. Spend weekends on couch or trying to do house work from week. Its awful as you know. So I just want you to onow you are not at ALL alone. Everyone on here has the same or similar or worse. I wish you the best. May you find healing. Take care of yourself as much as one can.


thank u so much for the reassurance, its good to hav people who actually understand. the upside to been sick is that I get to watch alot of movies and seen that I cant work anymore, iv being thinking of becoming a movie critic (lol). I have to keep my sense of humour, its the 1 thing that this sickness wont affect.


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