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Hi just looking for any advice really! Or anyone who has similar symptoms! I really hope someone has the patience to read this as I would apprechiate it greatly!!!
Here is my basic details- I live in North East England, female, 25, almost 26 years old! Used to be a teacher but had to give it up with everything that was going on with my health, and I now work part time for the NHS as its all I can manage. I would say my symptoms started when I was 21.
From what I've read so far, it looks like everyone has such different symptoms. So I know that no two people will be the same.
before diagnosis/rheumatology investigation I have had reccuring perocardial effusions (fluid surrounding my heart- extreme pain!!!) and pleuracy and I kept being admitted to hospital- last year it was every month practically (in coronary care) and with lots of other symptoms which have built up over the past few years the doctors have put it down to lupus. (My great grandma had lupus and she had heart problems and eventually had a pace maker fitted)
Anyways I think I'm having my first flare up since being on hydroxychloroquine.
I don't have any rash problems on my face but I do get the following:
Shoulder and chest pain
Really bad clicking of wrists, elbows, ankles and knees.
Shooting pains in my legs, arms, ankles and fingers
Cold, wrinkled fingers (like ive been in the bath!)
Skin looks like sh*t,dull spotty and tired
Some Hair and eyebrow loss
Some of the symptoms are there pretty much all of the time even when I'm feeling well (I have felt amazing for the first four months after starting hydroxychloroquine up until now) like the joint pain, cold fingers, shooting pains.
Went to rheumatologists two weeks ago and he gave me steroids as I can't cope with this pain in my chest and shoulder (pleural effusion coming back I guess!) and he said its possibly due to summer.
Anyway it's really getting me down as I can't live a normal life in this pain, and im worried this Is how life is going to be!! Ive had bloods done etc and he's considering starting me on a different tablet- azythorprin (not sure on name but sure someone will know what I'm on about!)
My main questions really are:
1) how often do people get flare ups?
2)does anyone get similar symptoms and how do they deal with the flare ups/pain
3) how long might my flare up last??
4) how can u prevent a flare up??
5)did it take anyone a long Time to try different treatments?
6) is there any tips in general for coping?
Thank you soooo much in advance- I would really apprechiate any help here.
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