Bit of advice.....: I'm in the middle of a nasty... - LUPUS UK

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Bit of advice.....

purple-lou profile image
10 Replies

I'm in the middle of a nasty flare.

I'm abit worried because I actually fell on the stairs. My legs have been especially sore and weak. They simply stopped working. Very scary. Had to be almost carried to the sofa. Also, when I flare, my hands always swell up. This time, I had a burning sensation on my hands. It is really tender.

My mobility is so bad now. Does anyone else have similar problems?

Many thanks,

Louise xxxx

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purple-lou
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10 Replies
Sher78 profile image
Sher78

Do u have APS?

wearmyshoes4awhile profile image
wearmyshoes4awhile in reply toSher78

sounds silly to ask but what is APS?

purple-lou profile image
purple-lou in reply toSher78

APS? I don't know what that is either! Xx

wearmyshoes4awhile profile image
wearmyshoes4awhile

I am exactly the same. I fall all the time. I broke my leg falling on the stairs. I know how u feel that when ur on the ground u feel numb. i have found that if u stay there for a while a build up ur energy then u can get up. if u need a chat please just get in touch x

purple-lou profile image
purple-lou in reply towearmyshoes4awhile

Thanks. Sometimes it is quite scary. Xxx

Jane-Martin profile image
Jane-Martin

Hi, APS is Antiphospholipid Syndrome, known as Hughes Syndrome in UK. It is an auto-immune blood clotting disorder. You should look it up as it is important you know about APS if you have Lupus as there is some connection between the two disorders. I have both. There is a Hughes Syndrome site on health Unlocked. But look at the Hughes Syndrome Foundation web site first.

Aside from that, you must tell your doctor about this fall and get yourself checked out.

I hope you feel better soon. Jane xxx

Sher78 profile image
Sher78

As Jane explained, APS is a clotting disorder. If u had APS I would've said a bleed may have occurred, I have a fantastic ability 2 bleed in2 my muscles, joints etc, it's almost a skill now lol! It can cause a Hell of a lot of pain & problems moving etc The thing is, if u have an injury, as our immune systems r a bit psychotic, they don't do what they're supposed 2 do so we don't always heal as well, as quickly or as properly as we should. U may have just bruised a bone or torn a ligament or something like that but as with anything with lupus, u need 2 mention it 2 u're GP. Also, get checked 4 Raynauds (especially if u have numbing of the hands & feet, they are cold & painful or change colour), Mixed Connective Tissue etc as lupus can come hand in hand with so many secondary illnesses that can actually cause more problems than the lupus itself. And don't ever feel silly 4 asking what things mean, there r so many long confusing words associated with lupus so many of us abbreviate them (don't have 2 worry about spelling them correctly then ;0) lol!). Hope u get on an even keel soon.

Gillyg profile image
Gillyg

Check to see if you are having TIA you need to know to get protection. Good luck xx

Sue2803 profile image
Sue2803

I have Lupus and Hughes, also diagnosed with Reynauds. I also fall a lot, either by losing my balance or just legs collapsing, have broken my arm recently, falling down stairs. You need to see your GP or Rheumy about the falls.

Sher78 profile image
Sher78

APS (Hughes) can effect u're balance. Need 2 b careful as obviously being on warfarin, heparin, clexane etc can cause an internal bleed & I speak from experience, it is not a pleasant experience if u have 2 have a bleed syringed off :0/

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