burning knees?

[dgleds]

hi!

Has anyone ever woken up with burning knees?...No pain...just like heat inside my knees...

[missymystique]

I had it once, no pain just burning sensation and it's a bit weird but it felt like my knees were wet all the time. Ihad it for a week or so and never again. I still don't know what it is

[dgleds in reply to missymystique]

its a strange feeling all right...I guess if it was arthritis it would have pain, but it doesn't...it just feels like hot inside the knees (both)...

[Hidden in reply to dgleds]

I had this in my wrists and arms for a year or two before my RA started with joint pain. I was baffled by it as you are but once RA started I assumed they went together. Then the joint pains subsided after a few years but nerve pain began in earnest. I'm still none the wiser and have had a few years of wet cold sensation in my legs, burning in feet and hands all through the days and excruciating pain in peripheries at night.

Now I'm on Azathioprine (less than two weeks) which isn't supposed to take effect for 6 weeks same as other DMARDs. But the nerve pain and weird wetness and hot flashes in various parts of my limbs, knees included, has all but gone. I'm still stiff and sore in mornings - especially hands, wrists and lower back -but relief from the wet sensation in legs and awful nerve pain is immense.

Check out Erythromelagia - formerly known as Mitchell's Disease which can go with RA for some - although little is known and there's no real treatment apart from Aspirin. It can come along often with Raynauds which I have. Just having a name sometimes helps though - especially if it's weird rather than painful.

[dgleds in reply to Hidden]

ok, thank you twitchytoes...I will read up on that.

[Pipido36]

I always feel this. At times feel like they are wet. It happens most of the time and there is no pain just the heat!

[dgleds in reply to Pipido36]

so it must go with lupus then...So far i have mild lupus (although rhumey took me off plaquinil), and I AM hypothyroid...My gran had rhumetoid arthritis though....

[Hidden in reply to dgleds]

I believe Erythromelagia can go with any rheumatic disease and with Hypothyroidism which I have too. I seem to land bits of all the connective tissue diseases. I didn't mind it so much when it was like a hot air blower but for 18 months it has been cold wetness and I find this as upsetting as being in pain - which I often am too. Always touching my trousers or leggings to see if they actually are wet - nuts really couldn't make it up?!

[dgleds]

That would be strange, cold wetness....I wonder if I will get that next? Well at least speaking with you folks for support, I will kind of know what it is...Rhumey appointment is in July...I got my collarbone and shoulder xrayed, but no call back so far...so guess not bone thing...At least they finally xrayed...

[EOLHPC]

I'm identifying with some who've replied above, dgleds.

My version of this burning can happen in almost all my joints, and is often there on waking up...but is a daily cycle regardless of season. When things are flaring in a particular way, this burning comes with an aching pain. And the burning often co-exists with freezing sensations. Sometimes the burning coincides with a visible redness, sometimes not (when there isn't any redness I usually figure it's Osteo arthritis mainly acting up)

The wetness sensation especially affects my knees, calves ankles & feet. Plus my right leg is best described as feeling as if it's a wet towel being twisted to ring it out...horrible. Also these parts feel very numb with pins 'n needles. I have chronic foot drop, which worsens when this symptoms complex flares

My Drs tell me this is all mainly due to debilitation caused by simultaneous raynauds & erythromelalgia + sjogrens + sle going without prescription systemic treatment most of my life. I understand my veins, nerves, tendons & joint capsules are especially affected. Peripheral neuropathy is a big part of this 'knees to toe tips' picture too, as well as vascular rashes (i attend a vasculitis & lupus rheumatology clinic). Another element is ehlers danlos type hypermobility, which causes paroxysmal haematomas mainly in my feet. And I do have some Osteo arthritis

So far, hydroxy helped a bit with all this, but pred tapers & daily myco have helped most to damp down this symptoms complex

I was diagnosed with simultaneous raynauds & erythromelalgia early in 2011. My fav source of info is:

The Erythromelalgia Association > What is EM?

erythromelalgia.org/WhatisE...

Erythromelalgia is a rare and frequently devastating disorder that typically affects the skin of the feet or hands, or both, and causes visible redness, intense heat ...

The association also has a great Facebook page

Hope you'll let us know what your rheumatologist says

[dgleds in reply to EOLHPC]

I have that tight feeling like a band around one knee at times...

I see the rhumey in July....

I didn't check for redness when hot knees happens, but I will next time...

Ive been off the plaquinil for 3 months now....I still have energy, but Id say half as much...I got them to finally xray my collarbone/shoulder area again...Its been hurting for like 2 years...and the area has gotten bigger from collarbone to shoulder as well...I tell allthe Gp and rhumey but they just say.."weird area to hurt", then do nothing...I guess its not bone, cause never got a call back...Stronger anti inflammatories take the pain away for a time, but pain comes back..I don't wanna live on diclofenac, bad for guts...

[chrisj]

Yes I do and not just in my knees but right down my legs and sometimes in my feet and palms...not nice..I have overlapping mild SLE and Sjogrens, also osteoarthritis and asthma

[dgleds]

its a very strange thing....hot knees!!!

I always wanted "hot legs" back in my 20's, but in my 50's I get hot knees..lol

You have asthma on top of the other stuff...that must be awful at times...My Dad didn't have asthma, but he had lung issues (maybe asbestos lungs)...so my heart goes out to you Chrisj...

Dad couldn't breath, they had his oxygen tanks turned up as high as they could go...

[foxglove]

Get this regularly, so used to it now that I tend to ignore esp. as doesn't seem to be causing any harm and not really unpleasant. I expect better than waking with COLD knees!

[dgleds in reply to foxglove]

yes ,cold knees might feel real strange...

[Hidden]

Cold knees are horrid believe me - enjoy your weird nerve issues while they are warm and relatively pleasant! I dream hot baths and warm sunshine nowadays.

[dgleds in reply to Hidden]

I read somewhere in last few days that Omega 3 6 9 with borage, flax and fish oils can make people get hot feet and hot knees etc...I might have this wrong, but because its a vasodialator...I know I spelt that wrong.. I just started taking that again last couple of months...

[Hidden in reply to dgleds]

Maybe a thought then? I hadn't heard this combination was a vasodilator and am avoiding fish oils and supplements other than AdCalD3 and B12 because my uric acid level was high a week ago. I think oily fish are also high in purines.

Mine has gone on far too long now to be traced to a food or a deficiency so I'm resigned to just blaming it on my RAplus!

[dgleds]

Well I'll experiment a bit and see what happens...

I went on a reading spree after I believe you (Twitchytoes), told me to read about Erythromelagia ...I would never find the article now, but was very interesting...

[Hidden]

yes

what it is?

[dgleds in reply to Hidden]

well the only thing they have ever said to me (The docs and specialists) is, i have mild lupus...and CPPD..which is Chondrocalcinosis (crystal deposits) its also called pseudogout (Fake gout..lol)...I also am hypothyroid, but slightly overmedicated, and post menopause...so I figure one of those, all of those, or a combo...I still doubt the mild lupus part, but i do have some odd things happen...and then the screwy ANA...