Has anyone had severe thigh pain with their lupus?

Hi,

I suspect I have lupus and am endeavouring to get tested for it as I have many of the symptoms, e.g. skin rashes, light and heat sensitivity, red flushing rash across cheeks and nose etc. Recently I've had horrendous outer thigh pain on one leg; it's made me bedridden. Has anyone experienced anything like this with their lupus?

Thanks,

Fielder

17 Replies

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  • Aww yes really bad. I was diagnosed with bursitis & I'm in agony . I really do sympathise with u. I've had loads of steroid injections but don't work anymore. X

  • Do none of the drugs used for lupus help you, tremarel? I was hoping if I were to be diagnosed and get some treatment, I might improve; it's all pretty daunting. How do they diagnose bursitis and is it normally connected with lupus, do you know? I hope you improve asap. Xx

  • No none of the drugs help because there is fluid there. Anti inflammatory drugs may help may help but as I got kidney transplant I can't have. I had mri to diagnose. Both hips are affected but my right one is worse. Hope they can sort u out soon.

    Best of luck God Bless Hayley x

  • Thanks Hayley. So, I guess it's a question of taking what pain medications you might be allowed and waiting for the body to deal with the fluid. I'm so sorry you're in so much pain. Here's hoping that something will change for the better for both of us and we'll be more comfortable again soon. The worst part I'm finding - other than handling the pain itself - is losing sleep because it; I'm a zombie atm :(

    All good wishes, Fielder xx

  • Aww bless u Fielder. I know the feeling. I'm in so much pain all the time not just with hips but the fibromyalgia is really bad. This weather in our country affects me so much just so changeable. Going warm & cold all the time. It hurts to breathe & bedtime is awful the bed hurts me. Never mind got to keep smiling despite it all hey ! Lol Hayley x

  • When I go to bed I say to my husband, "here it comes again - another night of being the living dead"! I have fibromyalgia too and have a Tempur bed and memory foam mattress topper on top of that, which is usually much more comfortable than any other bed I've ever tried, but at the moment I feel like I'm sleeping on a bed of nails...so I sympathise :( Hugs, Fielder X

  • I've had pain in my right hip for over a week that seems to go down into my thigh. It does sometimes feel sore but usually goes away after a short time....not sure what to think as I have osteoarthritis so dont know if its that or lupus. My rheumatologist reduced my hydroxy dose from 2 pills a day to one in february this year, he was concerned about side effects to the eyes. I wont see him till early next year so am thinking to go and see my gp..have taken paracetamol and its made no difference. Cant walk comfortably

  • I just looked up the possible side effects of hydroxy and one of them is leg/back pain; this webpage says to see your doctor if you're getting either of them, so I would think it best that you do see your GP about it asap rxlist.com/plaquenil-side-e... (It mentions myopathy further down the page too.) Hopefully, it won't be anything to do with the hydroxy, but best to check. Do let me know how you get on; I wish us both freedom from our leg pain. (I have muscle pain all over my body, but when it affects your legs and you can't walk or can't walk properly it's so frustratingly disabling :( )

  • Thanks for that, I'll have a look at the link now. I'd be surprised if it is hydroxy as they've been reduced and I've no side effects in 11 years...will try and get an app with my gp next week

  • Yep my thigh pain was the same as you describe it for about 9 months in both legs so it was horrendous to sleep and if my husband or I touched my leg it was hot and very painful. My GP didn't know what was going on, nor did my immunologist or was not interested in it. They are only interested when it involves joints. I went to an orthopedist, he said I had bursitis in both hips and should go back to my immunologist.

    Months of pain passed, I had to cancel my vacation and bought a wheelchair. After about 9 months the immunologist prescribed a strong painkiller: Celecobix/celebrex. In about 1-2 months the pain was reduced to 20% of the original pain level and I could sleep again. I stopped taking this medicin after three months and the terrible pain didn't return (so far).

    I just got a MRI scan checking for Myositis of my upper legs. Well I don't think they will find anything as now I don't have bursitis anymore.

    Kind of the story of my life...pain and agony for months to years and after strong medicin as a course of pred 30mg or 1-2 months celebrex day are willing to do a test.

    And what do you think the test will show? Exactly..nothing.

    41 y/o UCTD sufferer feeling it is rather Lupus

  • I find that too, Patricia...by the time my GP consents to doing any scans or other tests it's too late. If they would do them sooner the right treatment could be prescribed and we'd be saved so much pain and suffering plus we'd know exactly what's going on when it's actually going on. My GP actually deigned to do some blood tests for me recently, but as they show nothing amiss that's him covered and I'm just left to rot, bedridden.

    My thigh pain isn't hot, but my skin is really painful to even light touch and it's even more painful to sit, walk or lie on my side. I'm going to arrange to have some more blood tests done privately. I'm in the UK where we have a national health service, but it's becoming more and more that as individuals if we want the tests and the proper treatment we have to pay for it ourselves (when we've already paid for our health care through our taxes) :(

    I hope your pain stays away for good.

    Best wishes,

    Fielder

  • Exactly, I sometimes hope the doctors themselves get sick and then they start to feel the suffering, the social isolement, the fight against their body and the fight to be believed...

    I had exactly the same pain as you describe it :-/

    I live in Amsterdam, the Netherlands and the healthcare system it isn't any better here :-( Even, people who are chronically ill are punished financially harder... We pay every month between 100 and 200 Euro per person (if you want more coverage or to be able to choose your hospital you pay more) for health insurance, this insurance covers about 80% of all your expenses. And above that you have a so called "own risk" which is debited every time you use covered(!) health services. This amount is 400 Euro's a year. Of course the chronically ill spend this each year, I spend this amount by February normally...

    I hope your pain will be relieved soon and we will both be pain free or at least a certain level of pain we can live with...

  • Yes, I too have often wished that doctors were made to experience exactly what we experience. (However, for them there'd be no waiting around like we have to do for a diagnosis and treatment as they earn enough money to pay for and get the best care on demand and would have the contacts to get it! But it would be something if I knew that they had experienced pain like I've been experiencing in my thigh over the last few weeks.)

    As you say, here's hoping that we both will be pain free or our pain will be at least kept to a tolerable level.

    Do let me know the results of your MRI scan re myositis. Did they check your CPK level at all? (I understand that they should check this if they suspect myositis.)

    Kind wishes,

    Fielder

  • Bursitis?? I see a podiatrist every 3 months or so and she spotted a small blue blob under one of my little toes. I'd seen it but because it didnt hurt I didnt bother to mention it...she saw it last year and had me going to the hospital to have it checked. The doctor I saw said it was bursitis and didnt look like it was causing any trouble, which it wasnt. Its just sitting there. He told me if it became painful to go back and they would deal with it...What happens if it gets in your bones/joints? I didnt know you could get it like that

  • Bursitis happens with connective tissue diseases quite often.

    I don't think an inflammation can travel from your bursa to bones/joints. But of course a bigger area involving bones/joints can be involved.

  • Bursitis I got scanned on my thigh, then sent to physio he probed and said bursitis very sore and was limping, physio gave me steroid injection in thigh few weeks later great relieve, but still uncomfy to lie on, but 80./' better. Take care.

  • I think my thigh pain is located in the wrong place for it to be bursitis; it's further down my thigh from my hip than what I've seen illustrated on the Internet. Glad the injection helped you, molly19, and that you will be able to lie on your side again soon. I think it would be a good idea for me to have my leg scanned. I think I shall have to ask my GP about that as my pain isn't getting any better. Thanks so much for your reply.

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