LUPUS UK
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Pain in knee and cramp/ache above knee and below to foot - sound familar to anyone?

I have a pain in my knee which I've had for four days now. I don't remember hurting myself so am wondering if this is a new "something" I'm going to be getting from now on as it's the second time I've had it.

I've got Lupus, APS, Fibromyalgia and Hyperthyroidism. About 6 weeks ago I was a bit poorly - tied, achey all over, feeling weepy because I was feeling crappy - yeah, the usual !!!! About a week after I started feeling low I also got a pain in my knee (hurts to bend, can't put full weight on it) and also an ache and cramp above and below. I.E. above my knee/bottom on thigh and also below my knee I.E. shin/side/calf/instep. It lasted about a week and then went. It just so happened that in this week I'd had a booster jab which I'd spoken to my NP about prior to getting the knee pain. Lucky/coincidental.

As of Sunday gone, I've got the same knee issue again. However, besides the knee - I'm feeling well and don't have the periodic tired general ache all over at the moment. This is just the knee and leg problem.

Does this sound familar to anyone? Just wondering if this is a new "sympton" and something I should expect to have recurr from now on. I haven't been to the doctors this time or contacted my NP.

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Not unusual for lupus.

The kicker is it may or may not hurt again.

I have found that Lupus effects us all in different ways, but yet the same.

I'm in massage Thearpy, I get a 90 minute full body massage every month. This has seemed to help the joint pain. The massage therapist I have she moves the joints around plus, pays extra attention massaging the joint area.

I hope you get to feeling better!

Tiras

"The Barefoot Gardener"

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By the way I like your home page photo.

I too have a black cloud that hangs over me and followes me everywhere!

LOL!

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Me to 😂😂😂😂

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Hello nat 👋👋👋👋

I'm with tiras. There can be several reasons for this is patients like us...and sometimes you can have it for several overlapping reasons. Here is the potted (haha, 😉 not!) version of my knee to foot symptoms:

I have infant onset lupus + the typical bunch of secondaries, with cumulative damage due to my lupus diagnosis getting lost, so no systemic treatment until 5 years ago in my 50s

I now know that my knee to to foot symptomatology began way back in my youth...my knees ached all my teens, by my 20s I had bespoke orthotic insoles & severe neuropathy with weeping chilblains...I always wore "sensible shoes" & warm weather wear. I had lots of massage & reflexology & podiatry specialist nurse treatments, which soothed...😞 but the symptoms progressed relentlessly even so. All this got worse gradually despite good management. By my 30s I had foot drop on my worst leg...the NHS tested me for MS: not! By my 40s, I'd developed constant weird neuro & cramping symptoms up my legs + livedo reticularis + metatarsal bursitis, Mortons neuroma + erythromelalgia simultaneous with raynauds. These symptoms (+ similar in my hands) are what led to recovery of my lupus diagnosis in 2011.

By 2011, the chronic probs in my knees, legs & feet were so severe that for years I'd used a cane & wheelchair, couldn't stand for more than a few minutes & was having trouble using the pedals in my manual car. My right foot & leg continued to be the worst...and CRPS (complex regional pain syndrome) was diagnosed in the right forefoot. My pain consultant's steroid injections only gave temporary relief. I was very upset & low ☹️ Ortho surgeons refused surgery due to my immune dysfunction.

Luckily, my pain consultant referred me privately to a brilliant prof ortho surgeon on the other side of the U.K. In clinic he immediately figured out the last piece to the jigsaw puzzle of conditions affecting my feet/legs: TENDON TIGHTENING due to vascular type SLE + vascular EDS (ehlers danlos hypermobility) ....causing all the soft tissues of my legs & feet to be pulled together forcefully: UGH! It had caused equinus contracture: a form of club feet...which overlapped with all my previously diagnosed conditions creating the cumulative damage, constant pain & severe diasability! He prescribed an arduous rehab programme which a senior physio at the same hospital as my lupus & Vasculitis clinic has helped me continue. Within 12 months of practicing this rehab daily I was walking & standing again with hardly any pain, no cane & no wheelchair! 🤗 My daily combined therapy lupus meds definitely are necessary too: without these my soft tissue can't continue to loosen enough to respond to the daily rehab. All my overlapping conditions continue to affect me, but conscientious lifestyle management + all my multisystem prescription treatment plans are keeping me mobile & in much less pain. But it's clear that without all these versions of treatment, I'd be in a wheelchair

As you can see, this problem has affected my life hugely. I now know that I am not alone: Vasculitis patients share all these same probs with type 1 diabetics. Apparently vascular-type lupus patriots are more predisposed to this stuff. Otherwise, the arm & hand version of this stuff is more common in lupus patients

I hope something in there is helpful ...to you or to someone reading this thread ☺️

Am wishing you all the best as you figure out your version of this...I'm so glad you're catching your version of this (😉 whatever is causing it) early: diagnosis & prevention are key 🌟🌟🌟🌟

I hope you'll let us know how you get on

🍀🍀🍀🍀 coco

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Sounds very familiar. I get knee pain (either one or both), my ankles, hips, basically any joint. I even get joint pain where my ribs join my breast bone.

I also get a stiff/frozen left ankle (although that doesn't hurt, just doesn't bend properly).

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Do you pretty much put up with it or is there something that can be done when it ocurs?

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