Very Achy Thigh and Knee Pain !: Can anyone tell me... - LUPUS UK

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Very Achy Thigh and Knee Pain !

11 Replies

Can anyone tell me if they have achy thighs and knees a lot, as i have been on and off now for sometime.

ive been told that you can get blood thickening with lupus which can cause clots,how do we know? as my thighs have been soooo achy and my knees too and this has kept me a wake at night , i just don t know what to do with them when i try to sleep or rest its so frustrating.

debs xx

11 Replies
gertie profile image
gertie

Hi debs, my thighs ache all of the time...I always thought this was my worst area affect by the Lupus, I dont know anything about the blood thickening sorry.

in reply to gertie

hello gertie

my thighs seem to ache everyday too and its so hard to plan anything that means being on feet for a long time,i did tell my doc this but they don t seem to worry.

how do you deal with it? i just don t know weather to put my feet up or carry on my day. its so frustrating as i think i could cope with lupus if it wasn t for my knees and thighs.

gertie profile image
gertie in reply to

I try to do yoga to keep supple...my knees are always cracking with freaks me out. It has taken me 7 years to come to terms with Lupus and it is such a frustrating illness and yes the doctors just seem to stare when you mention pain. With me it is not necessarily the action of movement it is the suffering afterwards so you just have to get to really know your body. There is pain medication for muscle and joint pain called dioflenic google them and see what you think and they work within a few hours but it depends whether you want to go down that route.

Take Care

G

Lupylass profile image
Lupylass

Hi Debs

I get achy thighs too which I think is myalgia due to lupus. I find thy gentle exercise helps to keep my muscles mobile and the pain levels down. I also get hip pain (bursitis) and knee pain and find that Pilates and swimming helps. I do a lot of walking with my dog which can make the pain in my hips worse, but a warm bath helps to ease the aches.

in reply to Lupylass

hello lupylass

i too walk my dog everyday and sometimes i find walking helps the ache, but just lately its been really bad and its worrying me to death as i have only been recently diagnosed and its hard to take in all the symptoms that can happen, and every pain or ache you can t help but think the worst.

my doc said be aware of blood clotting and to go to A E if i get swelling sometimes you just wonder if you will ever get a day off from worrying.

debs

Lupylass profile image
Lupylass in reply to

I know what you mean - it seems like one thing after another doesn't it? When I was first diagnosed I saw my GP a lot with various symptoms. I felt terrible because I never seemed to be away from the surgery, but she was very reassuring and said that in time I'd settle into a routine. She was right. These days I have symptoms that are usual for me, that I just get on with, and then symptoms that recognise as needing medical attention. And some days I wonder if I need to see my GP and go through a phase of worrying!!

In time hopefully you will get into some sort of 'normality' for you. Until then use your GP for advice and of course come here where people can understand what you're going through.

lupydragon profile image
lupydragon

Hi Debs, i get achy thighs and knees on occaisions, the last time 3 weeks ago, both thighy were so bad I couldn't stand or walk without help for the whole evening, very scary, thighs ached for 3 days, but could move on my own after 12 hrs, but the aching in the thighs lasted for 3 days, when my knees ache especially at night, I roll up a hand towel and place behind the knees so they are not completly straight, seems to help a bit, hope you feel better soon

lindabrown profile image
lindabrown

I too have really achy hips and knees. Its the one thing that has been there everyday. Its always worse at bedtime. I use a heat pad on my hips and knees to try get some rest. When I waken during the night its like my knees have totally seized up.and the pain is excruciating when I try to straighten them out.

There are several highly effective topical Rxs that are safe to use for those with lupus. Expense may be an issue. Best to speak to your doctor about your options as all lupus patients are unique. Pain management is an art form. Some doctors are not up to date on what is available (especially off label use Rxs - many of which gain fab results).

thankyou for all your advice it really helps just knowing your not alone.

debs xxx

madhead profile image
madhead

I too have aches in both my knees most days on and off in fact all of my legs, fingers and wrists. The Derm constultants are 80 per cent sure mine is lupus but are keeping an open mind. this is been going on for at least 2yrs now and i am no nearer to getting def answers.

I have been taken off meds and am having UV light treatment as mine is SCLE, which should only affect the skin. hope you get some answers Debs

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