Lupus and leg pain

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I have got lupus and antiphospholipid syndrome, I get terrible leg pain which feels like growing pains. I used to get it occasionally but recently have been getting it more approx twice a wk. No pain killers help even tramadol all I can do is rub my legs and just go to bed. It's a feeling like the cold is right inside my bones sounds weird but it's really painful .

Does anyone else get this and know what it is?

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  • Posted

    Hi I have the same conditions as you and when I was first diagnosed I had the same awful pain in my legs. I was told it was part of a severe flare of the condition and it would improve. It did and I only have it occasionally now. I found massage and warm baths really helpful.

    Good luck.

    Val

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    • Posted

      Hi,

      Thanku for your reply, that is probably about right then as I have been having a flare up for last 6 months since having my 2nd baby and have recently been started on azathioprine as the hydroxychloroquine wasn't doing a great deal on its own and couldn't get my steroid dose down.

      Do they say it's part of the lupus or aps? As I say I've always had it occasionally but definitely more frequently now.

      What made ur flare up improve? And do u still get the leg pain but just not as often? X

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    • Posted

      Hi Sara

      I think your flare might be related to your baby's birth. Any hormonal change really affects lupus and aps. Lupus is probably the reason for the leg pain which is more autoimmune than blood related. Stress is another factor that can start a flare. My first one was probably due to having a really busy job. Now I know how to keep the flares under control it is easier. I have tried all the medication but I try not to takes it now as it an affect you in other ways. You might also have a vitamin d deficiency which is common with our diseases. I take a supplement and try to get at least 20minutes of full sun.

      I hope you have a good GP or consultant - it makes a great difference.

      I hope you manage to get the leg pain under control.

      Val

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    • Posted

      Yes probably due to the birth of my baby, I'm only well when I am pregnant! but this flare seems to have lasted lot longer than any other for some reason. I've had seriously bad fatigue too but since the new meds do seem to be having more better days than I was so fingers crossed!

      I do have a vit d deficiency so am on meds for that 3 X a week.

      I am up in north of England and managed to find a rheumatologist that specialises in lupus have to travel a bit to see him but worth it. My gp is ok I just feel like I have a million things wrong as always seem to be different problems so feel like am always going in with something but that's just the nature of these conditions I suppose!

      Thanku for ur help, the Drs never say much about my leg pain and never seem to get an answer for it so it's good to know it's not just me!

      Sara

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    • Posted

      Hi

      It is definitely not just you. There is a national organisation Lupus UK that has a good source of information especially advice on specialists. It is a good place to get support too. There are many other mums who have complications after births. Good luck.

      Val

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    • Posted

      Hi,

      Yes I think I will look into that thanku for your messages. Hope all continues to go well for you too.

      Sara

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  • Posted

    I was upside down after my youngest was Born,this is when all of my symptoms started, and then just got worse,now 6 years on I’m on getting a disagnosis and getting worse 😞 I defo agree with hormones that can set of a flare as your horemones will be going wild,i was never bad when pregnant with lupus symptoms,now I ache badly like growing pains,head aches,swelling,mouth ulcers that I don’t get a break from! Not just 1 but I get 10 at a time,my wrist get bad aches and I get shin splits from walking,I’m 33 and feel trapped l,can’t do anything as I ache and hurt  so bad I can cry 😢  my mood is like the weather as if when I’m that fatigued I’m groggy as I need sleep or I’m in pain.

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  • Posted

    Hi Sara...I know this thread is a couple of years old but I also have lupus and APS. And I have suffered from leg pain since I was diagnosed 15 years ago. It is a deep pain in my muscles and bones that aches really bad and makes it hard to walk sometimes. Especially right before my period when hormones are all over the place, it makes it 100xs worst. I had to start going to pain management to get the pain under control. I hope you have found some relief and are doing better.
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  • Posted

    Hi,I understand this post is old, but I'd love to know who the Doctor is in the north of England. My wife has lupus and suffers terrible leg pain. Thanks.

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