Hi all, I was wondering does anybody have get pains in their legs??

[irishgirl13]

I seem to get pain in my leg, just the 1 usually right leg between my knee and ankle, usually happen after I have been standing to long, rhymy said I have elasticated knees (lol) was wondering is this lupus related?? I usually rest my leg keep it elivated and pain is gone in a day are 2. Anyone else have this problem? ?

[Natura]

I get pain in my left calf and hamstring...comes and goes...always worried it's a clot...not sure what causes pain....could be minerals off balanced and need potassium..

[Hidden]

Yes!! I have pain throughout my body. Different day different spot. Currently really struggling with hip pain on both sides which is really horrid and have had pain from toes to elbows!

[Barnclown]

This may well be lupus-related. In my case something that I believe could be vvvvvv similar definitely IS exacerbated by my version of SLE. There may be other causes for you, but at least you can ask your health team about this...because perhaps this is part of your prob:

I could go on & on, but will try to keep my reply as clear & concise as I can...but I doubt I'll be brief....this subject is dear to my heart. I've spent the past 21 years getting the roots of my version of this problem accurately diagnosed and treated. I'm now 60. My impression is that VERY FEW consultants have enough insight to analyse it correctly, let alone treat it effectively...BUT I am now walking & standing again with hardly any pain thanks to 2 GREAT consultants, and daily physiotherapy so simple it can be done at home

Basically, I am diagnosed globally hypermobile, with elasticated connective tissues causing loose joints & a bendy bod. but, since birth, my tendons have experienced global denaturing & tightening due to infant onset lupus going without systemic treatment (I.e. prednisolone etc) all my life. In my case. The tendons worst affected are in my spine, legs, feet & hands. So, I'm v bendy, but my tendons are tight! A big contradiction!

My chronic spine & hands tendon tightening symptoms were reasonably effectively treated & managed before my SLE was finally diagnosed 3+ years ago. But the tendon aspect of my chronic leg & feet problems (these probs involved more than just tendon tightening....they included very similar symptoms to those you describe + also pins n needles, numbness etc, and in one foot excruciating pain episodes on weight bearing, foot drop so bad I was tested for MS in the '90s, plus simultaneous raynauds & erythromelalgia) remained a Puzzle to all drs, physio's, podiatrists, many consultants in many disciplines.

Meanwhile, I did my best to do all the right lifestyle management stuff (diet, supplements, exercise, meditation etc etc), and I compliantly wore my bespoke orthotics in sensible footwear, use a cane and keep going. as the years/decades passed, I gradually became increasingly disabled...while piece by piece, these medical types identified the jigsaw puzzle of causes for my leg/feet stuff. After my lupus was finally diagnosed, treatment with daily Hydroxy & pred tapers + amitrip & myco has somewhat helped this particular aspect of the issues lupus has given me, but what REALLY cracked my leg/feet probs happened last autumn when my hero Pain Consultant, who had been giving me temporary relief via steroid injections, referred me to a leg/foot wizard prof ortho surgeon on the other side of the uk.

The wizard diagnosed the missing piece to the jigsaw puzzle: tendon tightening! & prescribed a very specific regime of specially timed daily gastrocnemius stretching. Within 8 weeks, I no longer walked with a cane, and the lower leg/foot cramps I'd suffered from literally stopped. What's more the excruciating forefoot pain episodes had gradually flippin stopped....ARGH.....This felt like a miracle. I'm now in my 35th week, realising that I'll need these daily stretches all my life because full diagnosis of the complex reasons for my probs had been so delayed.

IF your tendons are also involved in causing your symptoms, there is a VERY simple test any insightful dr/physio can do to discover this. But they seem not to bother testing bendy (elasticated) patients like us.....my gp & has apologised for having neglected to do this test & soon I'll see how my rheumatology clinic reacts....I don't mean to accuse anyone of neglect...the wizard's written report does that in typically polite dr-speak....and I'm so happy to be less disabled, that I have no urge to be hard on any of my drs....after all, I have SLE: a multisystem disease, which is amongst the most complex to treat effectively....and finally, now, I'm on treatment plans that help me feel younger & more alive than I have since the 1970s....

I'll stop now...but if you'd like details of the physio my wizard prescribed, do tell me....I can make them truly brief!

Take care & good luck getting to the bottom of your version of this

XO

[Barnclown in reply to Barnclown]

PS have you been to this site:

hypermobility.org

This organisation explains about the bendiness/elasticity really well

[Hidden in reply to Barnclown]

My son (13) after a long process is now being tested for hypermobility. At first it was thought to be arthritis in his knees but MRI has ruled that out but his pain has been excruiating. He has been tested for lupus as well due to the fact that I have it but negative. I also think I may be extra bendy but havent been tested. My joints slip out of place regularly. Would love to know your physio regime!

[Barnclown in reply to Hidden]

Hello! I think I should post the physio regime on forum separate to this thread: will do so ASAP, probably to day - but feel free to contact me direct too. Am wishing you & your son as well as poss!

[Sutton210 in reply to Barnclown]

Hello there - I have been reading your post & I have very similar problems with my feet/legs & pain all over etc., being hypothyroid & having fibromyalgia for at least 10 yrs - I am also nearly 60 & can't seem to get any answers or relief from the pain - I wear orthodics & have to walk with crutches as I am due to have a hip op soon - my endo says all is ok & has referred me back to GP!

I am however not bendy - but very stiff & have tight calves feet pain & lower back pain which makes it very difficult for me to do much at all - even walk sometimes -- I would be very interested in knowing about your exercises as I am desperate to do anything that will ease the pain & help me try to live and enjoy life other than sitting or lying down !!!

Thank you - I am so glad that you have found a result after all these years & I sympathise as I know what's it's been like too!!

One last question how do the doc diagnose Lupus is something to do with antibodies in your blood?

Thanks again

[Barnclown in reply to Sutton210]

Hello! I'm going to post the physio regime on this forum ASAP so as not to complicate this thread of irishgirl's. So please watch out for it. I v much feel for you. My impression is that bendy & non bendy people can experience the sort of tendon tightening that can be at least partly responsible for these type of symptoms.

My understanding is that the diagnostic process for lupus is complex and highly refined. There is a list of diagnostic criteria used by consultants, and this includes various bloods results. But a highly experienced consultant can make a provisional diagnosis & begin treatment even if bloods are negative, so long as physical examination & medical history meet enough criteria. Then it is the way in which the patient responds to treatment & the passage of time that helps the consultant to refine a provisional diagnosis.

Wishing you all the best of possible health

[SarahHeney in reply to Barnclown]

Just saw this. I have the same. Currently getting Physio and hydrotherapy but found you answer really helpful. I was also becoming increasingly disabled with loose joints and major tendon shortening. Now working out a way forward x

[Barnclown in reply to SarahHeney]

HOORAY!

I know another great forum member who finds hydrotherapy vvv helpful for this

XO

[Gillyg]

Yes I believe it does, you can get pain in so many different place with no prior warning and will disappear just as quick. I had pain in my calf with a bad feeling of being unwell very painful my daughter took me to casualty just to be sure I have had 3previous mini strokes. I didn't want to go but in the end they were great and said never ignore psin that severe in case it is a DVT. We can't run to hospital all the time we would be living there. Mention it every time you go It has been suggested it's sciatica but I am not sure. Good luck in finding out but if not happy with answer keep going. We need more understanding. Hugs xx

[IrishLupie]

I get a very severe stinging pain in my right shin bone sometimes, usually from standing too long or sitting awkwardly, and sometimes just randomly for no reason. I've never actually asked but I have assumed it's my SLE because it's fairly transient and hasn't done anything more serious than pain me and cause my leg to buckle a few times. As a result of not asking I don't know what causes it but I've been told bone pain is no that uncommon in SLE so I've just put it down to that. Hope you find out what 's causing yours! x

[SarahHeney]

I think I can answer this as I get it in both legs and I know why. Rheumatologist diagnosed me with joint hyper mobility which many people with lupus have. What happens when you stand is that your knee joints will go into hyper extension, mine even lock, to keep you secure. Ie. bending slightly back on themselves. This totally over stretches the calf muscles which become overdeveloped and shortened and tight and very painful when you stand still for too long. Your knees and ankles can get quite weak. I am having Physio for it. You probably only get it in one leg because you favour that leg when you stand xx

[SarahHeney]

Sorry just saw Barnclowns wonderful post after I wrote this. Snap!!

[Wendy39]

I have pain in both of my legs too, lower leg. My rheumatologist told me I have slight hypermobility when she examined me at first appointment. I wasn't sure what the leg pain was. I have varicose veins too and these have been painful in the past, but it's a different pain now. I am also getting it in my wrists and hands. When the rheumatologist felt my wrists, she said I had a tendon problem both sides and asked if I waitressed or was a dog walker. No to both - highly allergic to dogs so can't think of anything worse for me. Anyway, could it be that the leg pain and hand and wrist pain are hypermobility or lupus? By the way, X-rays of my hands and feet revealed no sign of arthritis apparently. Realising already that lupus is such a confusing disease! Everyone is so different. I guess there are something's that you can never pin-point a cause. ?!?

[irishgirl13]

Thanks everyone for taking the time to reply i really appreciate hearing everyones own stories makes thinkin crazy lupus might not be so crazy, Sutton 2012 yes my blood :/ I have been diagnosed now about 3 years now :/

[louiseamos]

Hi.irishgirl13.. I too have bad bad leg.feet pain I could chop my legs off..seems to be bad in hot weather??? Iam on morpie for well damaged back.solisis. etc..dDDD.?? On pregapentin seemed to work at first?!now nothing..I am so in pain today..need help too??also have wrist.knee .joint pain.told could have fribo with chronic pain..I am not sure..??xx