Post rheumatologist appointment

[MickeyJoints]

Well perhaps not quite as useful as I would have liked. He's suggesting I might have another condition going on concurrently. I have stiffness in the hands and feet in the morning which eases as I move around. But there is constant pain throughout the day made worse by stressing the joints.

I've had another steroid injection and I hope that works. Plan is to wait for 6 weeks to see how it all reacts and then plan something else. He's suggesting there may be something else going on as well, as the pain gets worse through the day. Perhaps I over-played that aspect, but when I have to stop when dog walking as it's getting to sore in the feet, may be not.

One thing is clear, it's devil to diagnose! Here's the list I presented to him (I assumed he liked it as he put it in the notes!) - look familiar to anyone?

•Both hands and feet have constant pain with twitching, stabbing, spiking pains and throbbing

•Left foot, middle toe also joined in with acute pain on lateral pressure in the foot, where foot is compressed. Very sharp arresting pain

•Toes across both feet are now matching my hands in terms of pain.

•Have been woken at night this week with my feet on fire and cooled them off at an open window

•I have bought light-weight airy shoes to cope with the heated sensation in my feet

•Fatigue is constant and I’m measuring activity for myself as I now know I’m going to be tired in the afternoon

•Now having to walk our dogs in the morning only, as doing it in the late afternoon causes too much discomfort for the rest of the evening.

•There has been some ankle soreness but perhaps not RA associated, but hinting that it’s coming

•Knees are also troublesome with outside of knee cap on left leg especially having a tearing sensation when kneeling or knee at 90 degress.

Thanks,

[Hidden]

Well RA is a much more complex disease than just a disease of the joints. I have had burning in both my hands and feet which has been ongoing symptoms since my RA started.

There is a rare and little understood condition/ disease which can overlap with Lupus and RA called Erythromelalgia, which I think more people have as part of connective tissue diseases than is realised presently. I know it's pretty common for many of us to have overlap connective tissue diseases with our RA.

So yes much of your list describes my symptoms - although for me the pain is much worse when I'm lying down still - especially at night when it's almost unbearable often and I start trying to cool down my extremities from about 2am onwards. Filling a fine spray bottle with water is one thing I've found that helps and saves me getting up and running a cool bath as I used to do.

There are no hard and fast rules of course but morning stiffness is a much more common feature of RA than afternoon stiffness. However I don't suffer badly from either nowadays because I get up and down so much during the night that my body doesn't get much opportunity to become stiff!

[sheltielife]

Sounds very much like Erythromelalgia to me, which as Twitchytoes says goes along with RA and a few other things. You say your feet are on fire at night are they red? I have it and mine are really red and my hands and the only relief from the pain is to cool them down. For years I have had a ceiling fan going all night with the bottom bed clothes shifted, now it's got so bad that even that doesn't help. I sit all day with my feet on ice packs wrapped in a towel and can no longer walk at all I am in a wheelchair. So, before it gets this bad get help. Nobody believed me as it's so rare few doctors know of it. Take a look at erythromelalgia.org/WhatisE... They have a forum which I am now a moderator on.

[mirren]

It's worrying when we are afraid to say what we feel as if we don't fit neatly into their boxes we get thrown out! I wouldn't say I really do have or even had much morning stiffness as such, my pain when bad is constant, my stiffness is fluctuant and my worst times when at its worst before steroid jab was during the night. I was absolutely terrified I was going to be told fibromyalgia - because I knew it wasn't. Fortunately I had synovitis and lots of increased vascularity on my hand Doppler's so I got inflammatory Arthritis DX probably Psoriatic. Not fortunate to have, you know what I mean, fortunate to get DX and therefore treatment.

Mickey as long as you have a solid diagnosis of RhA they will treat that regardless, so you are free to be completely honest about your symptoms, its worrying when they float 'possibly something else going on' at you, but if its something they can do something about, the more you tell them about it, the sooner they can work out what it is. Sticking your feet our window though.... What do neighbours make of that!!

Hope steroids kick in and you get to enjoy walking dogs

[Hidden]

I'm with Sheltielife. I don't have the reddening but at its worst the burning is far more excruciating and distressing to me than my RA. I think that as time wears on since my diagnosis, I realise that this "self service" group of rheumatic diseases can morph regularly - certainly for me anyhow. So the main thing for me is to be under a rheumatologist who is open minded and not to have my symptoms dismissed wrongly as Fibro or OA or both. So far enough has shown up in my blood and spinal fluid that I am not made to feel it's all in my head but the only treatment that works for me so far is steroids - and this is only to an extent as I can't tolerate it at high doses.

As Mirren says a diagnosis of Fibro would have felt disastrous for me - although I haven't tolerated four dmards to date over a five year period so not sure that I'm much better off with my present diagnosis of shapeshiftjng RA.

But it means a lot to me to have my symptoms taken seriously by the medical profession because these are scary symptoms and seem to be progressing slowly but surely. I'm under a neurologist too but EM has been discounted for me because of the lack of reddening.

[MickeyJoints]

Hi sheltielife, mirren & Twitchytoes,

Sorry about the tardiness in response - just busy!

Thanks for the links for Erythromelalgia and I scrutinised the details carefully. The major sign, being the redness, is missing but I tick the box on the other signs. It's a bit like being stung with nettles and I'd not have thought it would wake me up in the night. I don't have it like you, sheltielife and my sympathies go to you.

And, mirren, the steroids have kicked in this morning! They do seem to take a day or two to get into action. It's like getting a few years chopped off your symptoms. The relief! I still do have pains and twinges to remind me, but they are about 80% gone. I think I may have been a bit confusing for the rheumy as one appointment it was like this, the next like that, so I need to be a better historian I think. Not to suggest I make up details to have then fit into the criteria, but be honest about what I'm feeling rather than modify then to fit anywhere, if you see what I mean.

While I do have hands and feet stiffness in the morning, I'm starting to think it's not too bad as I can make a grip within a few minutes, rather than the 30 for RhA. It's the rest of the day that is a bother, as the symptoms accumulate and I think that's the reason why he said something else might be going on. So perhaps not only, but also...

It's in the evening when sitting down to some tv or such like, after a few minutes I start to notice my feet are hurting then itching and hot, then I have to get up to apply some coolness and some ibuprophen gel, which helps. Very odd.

Shapeshifting RhA - I like it, Twitchytoes! As you say, these are scary symptoms - and I'm new to them - and my thoughts are along the lines of when are they going to stop? What can I do to arrest the progression? I need a diagnosis to allow effective intervention. I know some one who has palindromic arthritis and the biologicals have made a big difference for her, but that was after some time with the usual interventions

Thankfully I get to see the rheumy in 6 weeks and he's talked about amitriptyline next. Ok, I'll try that. Who knows, it might elevate the mood a bit too!

Cheers,

[Hidden]

I like your thinking Mickeyjoints. You really do not want to wait until it's as bad as Sheltielife's or even as bad as mine - which is pretty bad I have to say as it affects my hands and wrists and mouth/ gums/ nose and makes me feel as if I'm sitting in acid burning cold water throughout the day and wakes me as if I've been severely grazed - in all four peripheries - in the early hours most nights.

I see the neurologist again later today but nothing has flagged up for me yet, beyond paired O bands in my spinal fluid and blood indicating that a systemic process is occurring. Interestingly RA is not included on the list but vasculitis, Scleroderma and Lupus all are.

I am about to move to a new part of Scotland where I start with a new rheumy who was listed as one who is interested and aware of Erythromelalgia as well as taking a keen interested in rare systemic rheumatic diseases such as Vasculitus and Scleroderna. Needless to say my hopes are rather high although I'm trying to keep them in check!

[flow4]

I have some kind of tendinopathy and enthesitis, and have sort of similar symptoms, Mickey. I have a burning sensation and some redness and swelling in my hands and feet, and the pain is excruciating if I've walked too much or used my hands a lot. Mine has been untreated, and even undiagnosed until recently, and I've now also got lumps of fibre/bone growing at the tendon attachment points; the ones on the tops of my feet hurt particularly when walking because my shoes rub them. There are some differences in my symptoms and yours - my hands and feet can also go suddenly freezing cold, so presumably there's something circulatory going on, and I can sometimes walk the dog in the eve, but def couldn't manage it in the morning because I'm generally much stiffer and more sore then... But it might be worth checking out enthesitis to see if you think that fits...?