How often do you have flare ups?: Just curious how... - LUPUS UK

LUPUS UK

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How often do you have flare ups?

SRiley profile image

Just curious how often everyone has flare ups of their condition? How does a flare affect you?

I don’t have an official diagnosis but had what has been referred to as a ‘flare up of my auto immune system’ 4 months ago, resulting in Myelitis and Raynauds and other weird symptoms.

I haven’t had any medical treatment but was making a little bit of progress in that I could walk a bit more and go out of the house for around 3 hours. 5 days ago I seemed to have another ‘flare’ and have pretty much been bed bound since. Symptoms include: very heavy legs, feeling faint when i am standing, pins and needles in feet, dry mouth and strange chalky taste in mouth, muscles twitching in my thighs, prune-like fingers (looks like I’ve been in the bath for hours!).

Hope everyone is ok :-) thanks for all your lovely responses to my last post.

5 Replies

My flare ups are no way near as debilitating as yours, though I suffer with extreme fatigue and joint pains, I have never been bed bound or as restricted as you have been.

I went for a year with no flare ups, then another time I seemed to have one roughly every 4-6 weeks. The intensity of the flare is different all the time, it depends on how well I have been looking after myself and how much physical and emotional stress I am under.

It seems that everyone is affected slightly differently, but i find this forum helps me to know that I'm not the only one suffering and there are people out there who truly understand how it feels to live with an autoimmune disease.

I know my response isn't exactly helpful, but I hope you find a bit of comfort in the words and that another response comes along that helps you a little more.

I always have been very attune to every twinge or pain in my body, I admittedly have a long standing history of health anxiety so I believe I notice some normal occurrences more than say my husband would, so I just assume my twitching, pins and needles, dry eyes, and tinnitus are not flares but things that everybody has from time to time. Since I have begun therapy for my anxiety , I now seem to have less of these symptoms but I think I have just relearned how I think of them not that they are not happening any longer. I am older, just turned 50, so my joint and muscle pains I also attribute to normal aging process.

I honestly have only considered life threatening things as flares. I have only taken time off from work or family for hospital stays nothing else and this helps me forget my about my health. In my twenties my kidneys did not function properly that was my first incident I would consider a lupus flare. It was found at my yearly. My doctor noticed I had redness around my nose and cheeks and the protein in my urine sample so ran an ANA which was positive. I was an unusual case it seems for I received a lupus diagnosis without even searching or realizing something was wrong.

Six months of treatment and it resolved for almost 27 years then in October I had a massive border zone stroke followed by a second large stroke a few days latter. A hole in my heart, an atrial septal aneurysm and Antiphospholipid antibodies were discovered upon investigation so the stroke may or may not have been a flare. This has left me with right sided permanent weakness and numbness but I am hoping and planning on going another 20 plus years before any more flares. ;).

Luckily my flair ups are not as bad as yours I can’t say how often they come but if I have a cold or infection I get a flair sometimes I can go to bed and when I wake joints and muscles are stiff and sore and sometimes they floor me but luckily not to often and raynods is horrible but I got some med now 2hich actually work very well hope you feel better very soon

Thanks everyone :-) it’s interesting that stress seems to be a bit of a trigger for people’s flares. I managed to get to the ceremony of a friend’s wedding last week (which was a big deal as I haven’t been able to do too much since having Myelitis) and since then I’ve been feeling so unwell. I’m so frustrated as I felt I’d been making progress and now it’s like being back at square one :-( Hopefully starting steroids in the next few weeks, rheumy is still waiting for a few of my test results to come back. Do steroids help to keep flares at bay a little bit? I hope so *fingers crossed*

Good day SRiley how are you feeling today?

Just seeing your post. Don’t wish to scare you or anything but I have flares everyday up to 3 - 5 times per day. Sometimes they last up to hours. Other times up to 5 days although recently Raynaud’s flares lasted up to 14days. The whole 9 yards is thrown at me. To the point where total fatigued leads to me falling asleep over meals. Great care is exercised here because it could be a black out episode so they are constantly checking. I black out regularly.

Whenever I do have the odd ‘good days’ however short lived, I’m beaming but with the presence of a butterfly rash minus the pains 😁

Please how are you coping? Getting on now?

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