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bamablondie
New Member


Date Joined May 2017
Total Posts : 7
   Posted 5/8/2017 3:32 PM (GMT -6)   
Hey y'all.

I'm new here, and I have UCTD. So I'm sorry if I'm repeating a question someone else has already asked...

Right now, I am going through a flare. I knew it was coming because I started getting WAY more tired than usual (how can that even happen), hair started falling out more, etc...

My question is.. do y'all normally feel a flare up coming on? And if so, what do y'all do besides rest and meds? Any tips for a newbie? Just diagnosed with UCTD last month.

Thanks in advance. smile
Life is tough, my darling, but so are you...

Undifferentiated connective tissue disease, endometriosis, OCD, depression, anxiety, GERD, migraines, IBS

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 5/8/2017 4:01 PM (GMT -6)   
Yes, it's fairly common, especially after you get used to a disease like this, to know when a flare is coming. It's a bit like feeling the flu coming on...

And treating it is also kinda' like what you'd do for a flu. Eat regularly and as healthy as you can. Rest, avoid stress, avoid the sun & heat. Mild exercise, make sure to get deep, restorative sleep.

If you wake up more tired than when you went to bed, consider a sleep study - or if you wake up a lot in the night. It may be that you need a sleep aid of some sort. Sometimes we can sleep 14 hours and still be tired, that's what happened with me. I thought the Dr was crazy when he gave me a sleep aid - I was sleeping more than enough, I thought. Turns out I needed DEEPER sleep!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 5/8/2017 9:27 PM (GMT -6)   
Welcome to our forum bamablondie. I've had Lupus for years and sometimes the day before a flare I'll get a bright red butterfly rash, but other than that obvious sign I can't usually tell. For a few years I have been constantly sick so that makes it harder to predict a flare.

My very worst habit regarding taking care of myself is that when I feel partly crappie as opposed to crappie, I "take advantage" of my newfound energy and I do too much. Lupies must learn to pace themselves and rest often during the day. If you do too much, you can cause a flare. So a flare is over, I have some energy, then I work too hard and I flare. Bama, when you are past this flare, pace yourself. Perhaps someday I'll learn. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1341
   Posted 5/8/2017 9:38 PM (GMT -6)   
Some can recognize a flare. In my case I do not because it goes after organs or blood....not the usual stuff. every case is different but most patients do know when a flare is coming and have a particular signature for their flares. Old guys like me seem to have a different pattern and often more serious because of the silent attacks on organs and blood, etc.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

kayva61014
Regular Member


Date Joined Nov 2016
Total Posts : 22
   Posted 5/10/2017 10:19 AM (GMT -6)   
I feel very ill when it's coming on... I almost get shakey and cold similar to the flu... then comes the joint/muscle pain. I try to rest when I can but I work and I have a 5 and 3 year old. Resting isn't easy.

I'm currently in a 3 week flare after coming off Prednisone. No sign of it going away anytime soon either.

Im also a newbie. I'm trying to figure out how to lessen flares and what not. So far I've flared more than I've been healthy so obviously I'm not a good one to give advice. Haha

bamablondie
New Member


Date Joined May 2017
Total Posts : 7
   Posted 5/10/2017 10:56 AM (GMT -6)   
Thanks for the warm welcome everyone! smile

But yep - still feel lousy. Last night I was so tired, but my body was so restless I couldn't sleep. My back ached, my legs ached, and my arms ached, but I couldn't lay still. I tossed and turned. I tried everything I could think of to try to get comfortable, but nothing worked. My body just had to move. My feet and ankles were SO swollen and in so much pain - yesterday it was hard to just walk around the office, but I managed (thank God for a desk job).

I need rest. I usually sleep 10-12 hours a night. I've called my rheumy and he just says to take Aleve and extra strength Tylenol for now...
Life is tough, my darling, but so are you...

Undifferentiated connective tissue disease, endometriosis, OCD, depression, anxiety, GERD, migraines, IBS
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