APS and bones: I have read up on this... - Hughes Syndrome A...

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APS and bones

stillwaiting profile image
8 Replies

I have read up on this on the HSF site today because I am a bit concerned. I have a lot of bone pain but last night I could not move my legs at all - it was as if my hips had just locked. The pain was pretty bad. It only lasted a minute or two but I felt very shaky after - scared I think :) I have read that bone damage due to APS is quite rare. I would be interested to hear your experiences. The same thing happened a few weeks ago - but this time my arms and again not for long.

lynn.x.

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stillwaiting profile image
stillwaiting
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MaryF profile image
MaryFAdministrator

I had this after my last child. My legs locked and I had to go off in ambulance after doctor had visited... it was actually a flare up of some sort which I had had before, (years of sero negative lupus), although I am fully signed up with passed tests now, and of course my Hughes Syndrome. It was awful, and considered to be extreme inflammation it did pass, and x rays ok in the end.. I was like it for about a month at a time. Mary F x

stillwaiting profile image
stillwaiting in reply to MaryF

thanks Mary - yes it does happen when I am in a flare up - I am being re-tested re lupus and of course there is the APS already diagnosed.

L.x.

I have had bone pain for years. That is one of the reasons they tested me. I am on narcotic meds it gets so bad. I want you to know that you are not alone with this type of pain. I am still going through the process of the doctors trying to decide if Lupus is a factor in my APS. I hope you feel better soon.

Linda

stillwaiting profile image
stillwaiting in reply to

Yes I am also going through the "is lupus involved too?" - should get tests back in a fortnight.

Thanks for replying.

L.x.

elfortes profile image
elfortes

Where in the hips? Was it in the front, on the sides or deep in the joint? This can make a huge difference (after hip surgery, rehab and pain management I've had to learn a lot about the differences.

My hips lock up in the front, which are actually considered the groin muscles. It's from having quads that are too strong compared to other leg muscles and/or sitting for a desk job...

stillwaiting profile image
stillwaiting

I'd say the pain is deep in the joint but the whole area is also tender to touch when it flares up. The lock felt like at the sides.

L.x.

Silent1 profile image
Silent1

I have been having horrible feet pain. My toes are becoming so stiff several of them can not move. The pads of my feet are horrible. They keep thinking I have Lupus but nothing comes up positive. Plaquenil helps a lot but the foot pain is immobilizing.

stillwaiting profile image
stillwaiting

Thank you. I did have a steroid injection for bursitis a couple of weeks before I was diagnosed with APS. I hadn't thought it was that because before my legs didn't go immobile. I shall look up your link - thank you.

L.x.

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