Anyone get deep heat in joints and limbs?

Mat48

Hi - my second posting. Does anyone else get a deep heat sensation in their limbs and so it sometimes spreads around the body (apart from head and neck?)

I have what I believe to be Palindromic Rheumatism but no diagnosis yet apart from suspect RA. I am also peri-menopausal (in and around my menopause) and have asked on a menopause forum if others ever experience these symptoms as a hot flush - but no one seemed to, apart from a couple of women with arthritic conditions but even theirs wasn't quite like this.

The main heat, which I've been experiencing for well over a year now is in my feet going up my calves to my knees, in my wrists and up my arms. It does not feel hot to the touch nor is there visible redening - but feels like I've smothered the afflicted area in deep heat muscle gel or been injected with boiling eucalyptus oil! It isn't really unpleasant except after strenuous activity, but it is disconcerting and I would like to know if others experience it also. There is some correspondence with the painful joints and the heat sensation so I've wondered if it was inflammation but my feet and wrists don't appear to be swollen even when they are at their hottest so I'm baffled.

Has anyone else had this I wonder? :?: :???:

dreamdaisy

My knees and ankles are on fire, yes. All the time, night and day. I guess that it is, in my case, the OA letting me know it's there as the PA pain is different. We all feel pain differently, but we know what it is like. DD

valval

you do not always get swelling with the heat so could be that ask doc or rhummy to be sure val

Mat48

Thanks DD. Is the heat in your ankles/ knees a heat you can touch or is it as I describe mine being, a deep heat inside the joint/ limb? Might all this be OA then if that is what you suffer from or is that different to the PR or OA can you tell me? I know that so many of these symptoms overlap but I'm just trying to fathom whether I have RA, PR or OA or all three? Help!!! But I guess it just happens that many people who suffer from one suffer from others too.

I wondered if I might have OA in my hands because I have recently arrived nodules on the top finger joints called Heberden nodules (sp?) and they both ache constantly and my GP and rheumy both said that these nodules are more linked to OA than RA.

Out of interest does OA pain also just disappear completely and then return somewhere else or is it confined to one joint at a time? Sorry for firing questions like this but I'm getting so desperate to know what it is that's causing me to hobble about getting stiffer by the day with pain springing up all over the place and deep heat soaring up from feet to my arms and chest!

kellerman

Hi,
Well I'm not going to be much help but here goes.I get really hot knees with no swelling. Pain hip,groin,thigh,knees and feet normally all together if I walk too far.Hands it comes and goes.
At the moment it's just both knees burning and painful.
GP told me I have OA. I just don't know but I have a rheumy appointment next month so may get some answers.
Sorry I can't help much
May

Mat48

Oh dear May you sound as confused as I feel? I do hope the rheumy makes sense of it all for you next month. Best of luck.

I haven't had anything in the hip yet and my GP thinks I'm too young for OA? He seems to think it's RA in the early stages for me. I'm not that confident that GPs know that much about rheumatology to be honest. I know people younger than me with OA and I certainly don't feel very young at the moment with my stiff gait and weird hands. Just been to a play and I was one of the youngest people in the audience at 48 I felt like borrowing one of the older people's sticks as some of them seemed far more spritely than I! It's so hard to sit in a confined space these days. Dread having to travel anywhere long haul in confined circs ie an aeroplane or bus :???: Mat x

dreamdaisy

The PA began in '97 with a swelling left knee. That was always hot to the touch and yes, there was pain but not too deep. Then the right knee joined in, swelling, hot to the touch and pain. Then the ankles followed a similar pattern. After numerous treatments (which never stopped the swelling or the heat) I began humira which almost instantaneously took the heat away (not the swelling or the pain though). My knees and ankles have been cold to the touch for 26 months and still take the rheumatology nurse by surprise.

The OA was discovered in April - I knew the pain had changed and eventually remembered to ask for an Xray as I wanted to see just how damaged my knees were from the PA. There it was, in black and various shades of grey, bone-on-bone and extra growths, long-established OA. Now the pain and heat are IN the joint, but not to the touch. The OA pain is far worse than the PA (now in my hands, elbows, wrists and toes) adn I suspect there is also OA in my ankles (I have had those Xrayed, will ask about the results next month at my appointment).

Don't be afraid to use a stick, or maybe two, they do help. If you opt for one then use it on the opposite side to the affected joint. I began this tedious journey at the age of 37, by 42 I was on crutches and remain so. It matters not, the crutches mean I can walk a little further and do a little more and THAT is what counts. I will be spending at least four hours tonight sitting with friends in a pub then a curry house and know that tomorrow I will pay for it but again, it matters not. It's more important for me to see my friends. I am getting better at bossing my arthritis around rather than it bossing me.

Does the pain go away? Not for me, it's been constant for fifteen years and I must admit I do look back to the good old days when it was only one affected joint. I felt outraged then - thank whoever I had no idea what was coming.

We are all different in how we are affected, in how we hurt and in how we cope. Talk to us, we know our stuff and will do our best to help. DD

Mat48

Well DD your story makes me feel very fortunate to date. And thanks for explaining how it was for you. I think, from what I've read, that mine is quite classic Palindromic Rhueumatism. Last weekend I had sharp pains in my knees, especially going up and down stairs. Then it mostly departed my knees so I woke up on Monday able to navigate our many stairs again, albeit stiffly.

I have a lot of catching up to do with my work as an embroidery artist as we have an exhibition in 3 weeks time so I went flat out and then my wrists went to pot. No swelling but my right wrist became so excruciating that I couldn't turn the car key in the ignition or chop my food. 2 days of that and now it's my right forefinger's turn - it's swollen and stiff and incredibly painful if I try and bend it. Last night it woke me 3 times despite wearing a wrist splint - if I so much as tweaked it a little. Also I get locking pains that move about so that for a few weeks I'll be woken by a terrible pain in my wrist when it's my shoulder that's bad in day time - then it'll be my right knee that makes me yelp when I shift in the night but this generally goes when I move about. It is SO weird to me but manageable when it's just a finger that feels as though it's broken - less so a knee or ankle of course. And between all that there are many aches and pains in different joints but they are more lurking and I think I'm noticing them less and less. It did all go away for 3 weeks last month and I really thought "that's it - it's all been menopausal and the RA part has burnt itself out" but then it returned like a malevolent force to remind me that it perhaps was not just down to hormonal changes after all.

I'm going to walk the dog and then go and hear my 16 year old son playing blues in his new band at the Legion for the Blues Festival weekend here so I too will probably pay a price - but wouldn't miss it for the world - worth every last bit of ensuing agony!! Smothered my right forefinger and surrounding area in Phorpain Gel and waiting for it to kick in!

Have a great time in the pub with your friends DD - as you rightly say what would life be worth if not for friends? A price worth paying I agree 100% but do hope you get off with it just for once. Fingers crosses (with a little help from the gel!) Mat x

Mat48

Ps a stick or crutches would be good for knees and ankles/ feet when they are bad -but a problem for my hands (wrists and fingers) which are the most constant area of pain I find.

Pps interesting about the OA heat inside the joint - that sounds much more familiar to me than the touch heat others speak of. Thank-you!

dreamdaisy

As you are troubled with your hands then I would recommend a crutch or crutches with a shaped, ergonomic handle. The idea is not to put all your weight through them, they are there to balance and support, that's it. I was taught how to use mine by a wonderful physio after my first synovectomey - my left knee reached 24 inches round before anyone thought an op might be a good idea and by the time it came it was 27! As the swelling was all above the kneecap I looked well weird. (still do! ) As for tonight payback is guaranteed given what I'll be doing, plus the fact I am off the PA meds due to pharyngitis. As I said, it matters not.

I have more thoughts but as my hands are hurting I shall keep 'em to meself for the time being! Have a good week-end and I hope your lad's gig goes well - sounds like fun! DD

tkachev

Mat I am 48 and I have OA in my left ankle. Nobody has said I am too young. I also have R.A so was surprisd to be told the foot pain was OA.I get the heat in my left ankle but others can feel it. My heat increases with the pain I find. It is usually caused by wear and tear so does not spread and does not get better. I am going to need surgery to make the pain go away (hopefully).
I used to do gymnastics so think that is probably where my damage originates from.Lots of heavy landings from high up!

Elizabeth

Mat48

Thanks Elizabeth. I think my GP has just got it into his head that I have early RA and is very reluctant to explore other ideas now where I'm concerned. I guess that happens. I haven't seen him for a while but am seeing him on Thursday and hope to get an answer re my anti-ccp result and also get him to take some other tests such as inflammatory markers and a Vit D test because I want to know that he's covered other possibilities while I wait to see rheumy again in November.

I think the heat thing sounds similar but still mine is different because it's not confined to one area and is often spread about like a deep flush all around my limbs and joints. A year ago it was mainly in my wrists and because this was before the pain started i assumed it was just faulty wiring for my menopause but now I think it might link to both hormonal fluctuations and the PR/ RA because it does seem to move about a lot and so does my joint pain so far.

Am I right in thinking that OA pain is more confined to one area/ joint or several - but stays put there rather than departing, leaving no trace and before turning up somewhere else the next day? I had my hands and wrists X-rayed 3 months ago and they were normal and the GPs have both said that if it is RA it would be 2 years before any damage was done to joints so I shouldn't worry about that. But it's hard to imagine how anything this painful could not also be doing some harm?! And it makes life, holidays, day trips etc so hard to plan because you never know from one day to the next which bit of you will be out of action!

Sorry to go on but I'm feeling so isolated with it because no one seems to know much about RA (except that it's awful) but Palindromic is even more obscure and I look well having lost a lot of weight so it's hard to explain why I can't use my right hand - lift a glass as normal etc. And the heat today is epic - arms feel constantly on fire! Mat

Mat48

Ps if gymnastics have caused your present problems Elizabeth - then its quite likely that constantly working with my hands has caused mine in wrists and fingers I guess. Embroidery sounds as though it would be quite benign but mine is extremely detailed and requires a lot of pulling and tightening as well as the fiddliness of the stitching. I am going to have to find a new much loser approach to my work I think.

dreamdaisy

When it comes to pain there are no rules about where, when and for how long. For some the pain migrates, for others it stays still, it can fluctuate in level - everyone is different and your pain pattern is unique to you. This is a very difficult and frustrating time for you Mat, no doubt about that.

One of my other thoughts was this: is there anyone else in your immediate and distant family who has a history of auto-immune based conditions? I know that someone relatively new has mentioned a history of such matters and if it was you I apologise - it's not easy keeping track of everyone! DD

Mat48

Yes it was me I think DD. My dad and granddad both had type 2 diabetes and one of my first cousins has RA. My mum may have had OA and my Gran too(RA) but unfortunately both my parents and grandparents are all gone now - not connected to the autoimmune conditions but suddenly in car crashes in their sixties (grandparents) or of sudden heart failure/ strokes in their early 70s so I can't be sure if any had RA or other autoimmune conditions - but I'm more or less sure my gran had some form of rheumatic disorder. That is one reason why my GP is so sure this is some form of autoimmune inflammatory arthritis rather than OA.

I admit the uncertainty has unhinged me at points this year but now i'm so sure it's PR that I'm a bit more relaxed and to be honest I think my pain threshold has gone up too as I've lost a lot of weight and that's all helping. I do have a really weird pain in my chest just now - on the centre right rather than the heart and have been wondering if this PR can land on rib cage or other joints but it's not bad enough to mention to the dr yet. On the whole I think I've got off light when I read about people's experiences here and on the NRAS site as I am not flu-like or unduly fatigued.

I did get severely and uncharacteristically depressed at the start of the summer when my GP told me it was RA and I read about it and just felt my world had caved in. But now I'm just living each day as it comes and trying to pace myself better.

Thanks for your advice and support - I realise everyone is different but just wanted to know if anyone else had had this deep heat in limbs/ joints so I can eliminate menopausal hot flushes etc or not. Mat xxx

SteveBurns

When an area of the body is damaged there is a natural mechanism that sends fresh blood to the area in an effort to repair. I believe it is this reaction to damage that causes heat to build up in the area.

I have RA in both knees and occasionally get a nice warm feeling in the knees.

Mat48

Thanks Steve - that does sound like mine only not confined to knees in my case. When it all kicked off a friend suggested that the heat was my body sending healing waves to the pained joints and although I sniffed at the time I think that's rather a nice thought and ties in with what you are saying somehow?