The 3 S's of RA - diagnostic musts?

Hi all - can't yet bring myself to go away from all of you yet and still waiting for consultant's letter to GP with test results and plan - hence the questions. My GP and the rheumy both seemed to think it unlikely that I have RA if I have not had visible signs such as reddening of skin, touch heat and obvious swelling. Does anyone here have RA without these symptoms? I still have sore feet and after walking they feel as though they had been boiled in oil - but at least I can walk again after a period of crabbing it sideways on my bum! But my hands, also deep down hot but nothing visible - are pretty hellish by evenings. I feel like yelling with it right now so I'll stop typing and see what this question brings if anything. Does anyone have any suggestions of things this could be if it's not RA?

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  • I never had touch heat or redening, but I did have positive factor in blood! My feet and shoulder were aching for about a year prior to diagnosis. The swelling followed very soon after diagnosis. It sounds your feet are very like mine were and still are by times. How can they say it has to be visible?? Its a SYSTEMIC illness which means it can be anywhere, like inside a shoulder joint.. Is there no elevation in your inflammation in your blood. Have you no positive factor?

  • That's helpful thanks Gina. I am mostly pretty well just now and haven't had any real stiffness or swelling since back in May. As I've said before if I get lemons I'll try and make lemonade. I thought I couldn't make lemonade but now realise the uncertainty and pain are the lemons and lemonade is the huge taking stock and weight loss to date! I do have low positive rhuematoid factor and elevated ESR but neither hugely high. It's just that rheumy said I have to wait for flare with visible redness and swell to show up before he can diagnose RA. GP agreed unusual not to see red, swell and touch heat and then I read 3 S's on this site! Imagine how visible it would need to be to show up on a video link?! Tilda

  • Hi Tilda - Glad you're still here.

    None of my blood tests have come back overly high either. I sometimes wonder if I have RA? I have had joint problems on and off for years. I think pinning down these inflammatory (auto immune) conditions is like looking for the proverbial needle! After years of problems on and off finally having the RA diagnosis was a relief!

    I thought the "hot" feelings in my limbs (all over) was the end of my menopause too. I have had swellings which have come up really red and sore, but not always over the joints. Especially in my hands. Over the course of a couple of days I have literally seen it "creep" from my knuckle joint, over the back of my hand and end up over my thumb joint. When I told the GP this, he thought I was nuts I think!! I was at that time put on Diclofenac (NSAID) for OA. The red (very sporadic) swellings stopped but the pain and stiffness continued, but my joints still felt hot inside?

    All last summer when I had awful pain in hand and wrist joints, then weren't swollen and red but felt warm, and looked a bit puffy - some days worse than others. I was told that my RF factor was not raised - I had 4 tests in all then by October I was diagnosed by the consultant after I described my symptoms. Although I have since learnt the RF factor was slightly raised in the March of that year but my GP didn't even tell me!

    So I continue to pump the MTX into me, my bloods are normal, and I still get tired, painful and stiff joints, and although they don't look hot, they feel hot.

    I have lately swung from thinking is it something else, or am I a hypochondriac?

    Sorry bit of a long winded reply and probably not very helpful?

    Julie xxx

  • Actually everything is helpful Julie - especially the experiences of others like yourself. I am so muddled as you can tell! The other night I took our dog for a walk over the hill at night as I felt great and the sun was shining etc. My ankle was a bit sore but I thought "this is just bonsense". I ended up walking for miles along the road because I feel great when I keep moving and the huge blue sky and lovely views made me feel so optimistic. The boys phoned me when I'd been gone past 9.30 pm a little concerned about mum's absence of over an hour. By this time I was constantly correcting a hobble! Finally home and I felt great, despite heat in both feet.

    Fine all day yesterday but pain in hands was awful so that had my attention as I was out with friends at lunchtime and had to keep sticking them both inside my shirt for warmth of my chest to soothe them but didn't want to explain because no one I know seems to have a clue what RA is. Also sick of feeling like a hypochondriac as you say you do too! its really just because I know I look well just now as ive lost 2 stone since all kicked off in April. But mostly (apart from steroid time) much as I have just lost my appetite as I've lost my ability to sleep!

    So by last night I was stiff and sore and deep heat everywhere - took a couple of paracetamol and went to bed late- and now it's 5.30 am and I've hardly slept for pain and soaring heat in both feet and hands. Now the feet must be paying the price for that long walk on the road and the hands - well that must be all the embroidery work I've been catching up on as part my artist job - this week! So I can explain it all away but it's a relief to have others to share it with who know where I'm coming from i admit! This waiting game and the hidden pain will drive me nuts soon so thanks for keeping me sane to date! You are certainly not a hypochondriac and nor am I - it's just struggling with the preconceptions of others and ourselves that's tough I believe.

  • my hands feel hot inside and often outside!!.. some times the nuckles are red

    .. im on steroids/ gold injection..I hand an ultrasound of them yest.. inflammation signs had gone!! Dr doing this told me this!! possible privelege of going in" white" not sure if he would tell other patients??..

    I was a bit peeved. or should I feel relieved?.. they are hurting this morning!!. he muttered something like the steroids are doing their job at keeping the inflammation at bay..(plus maybe the dreaded gold is working?? my other theory!). the only problem is questionable side effects such as blood in urine are creepiing in most weeks!! gold can cause kidney damage!

  • Hi Tilda sorry you have been unable to sleep because of pain and hot feet and hands - when this happens to me I wrap the 'offending foot (feet) and hand(s) in cold wet-ish towels with a large dry towel on the bed so it keeps the bed dry. Usually doesn't take me long to drop off to sleep after this - may all be in my mind of course.

    Running (or soaking) hands and/or feet under cold water also helps me. We are all different but I find cold works for me - others find warmth helps.

  • Ha ha you can tell I wrote that on my little phone at 5am because I've written "Bonsense" for nonsense! I think bonsense is more descriptive now.

    Thanks for the suggestion Judi. I'm okay once I'm up and about at the moment but when Im lying down or sitting still for any long period everything seems to get worse. I don't think the towels would work because I'd kick them off soon. Even hubby and dog depart to the spare room after a few hours with me kicking about and propping pillows everywhere. Also I think warmth/ heat is the comfort but then with all the deep heat I expire and long for ice cold so not really sure on that one. I often find myself clutching hands round cold glass or hot mugs these days so maybe both have comfort factor for me. But then I've surfaced to find once again that there is absolutely no trace of swelling or redness (always a bit stiff first thing of course). Just the crunchy feet that Williby describes but everything looks regular and fine. So that's when I start to wonder if it's all in my head again?! So I can understand how you feel both peeved and relieved Allison - I spend my whole life swithering between both just now. Relieved and feel lucky so far not to be on MTX or other drugs - peeved to put it mildly that I have nothing visible to show for all this pain.

  • Hi Tilda. I had nothing but pain for about 8 - 12 months or so before the "official" diagnosis. For me it all started when I had to stop digging potatoes and other similar activities after about 10 minutes as pain across ball of foot was too much. Then it progressed so that got pain if I walked too far, ie more than 10 miles. Then pain if I walked a little, ie down to shops. Then pain all the time. Then pain that woke me in the night. Then it started in the hands. And so on as it took hold across my body. But it wasn't until months later that I could actually see any redness or swelling. But everybody is different with this disease, so it must be really frustrating not knowing. Tho' I wouldn't want to wish it on anyone, so the fact that there's a good chance that you don't have it is really something to hang on to. And loosing 2 stone which is fantastic. I wish I could! Polly

  • Thanks Polly - it's a balancing act of not being over hopeful just in case - but not allowing self to wallow in pain and self pity just in case?! As I've said: uncertainty and pain= present set of lemons and weight loss and improvement in general health = lemonade. A friend also came out with a theory that weight loss is my way of getting some visible manifestation of all this pain so people know my life has been changed by something at least?! I've struggled with weight since my late teens but this time I mean business although it was really hard when the Kenalog was in my system. Maybe if I do have to take mtx the nausea that most speak about about will help me to shed a further few stone as needed?!

  • I lost a lot of weight before being diagnosed ,,when the disease is active and un medicated this can happen..

  • Ah the pain that wakes you in the night, I think that sends alarm bells ringing with most med proffessionals, hypochondriacs don't experience pain while asleep!

  • Hi Tilda

    Have you had an Anti-CCP Antibody test yet? If you research this you will see that this is the most accurate predictor of the potential onset of RA. Rheumatoid Factor can be of no use as it can be False Positive and vice versa.

    I've only learned all this since my first attack of 9 back last July. My symptoms were much like yours, like someone injecting burning oil into my hands. It was so bad I had to call out of hours doctors several times and one came out and gave me a Tramadol injection which didn't work either. I tried cold water and ice packs none of which worked for me.

    Also one time it attacked my ankle and foot and like you I was shuffling on my bottom!

    The only thing that worked was Prednisolone (but not for some 4 hours or so) i.e. steroids but this is the short term solution.

    I am now on Plaquenil and have not had an attack since April although I am getting other things like weak knee, tingly right hand, and clicking tendons - and feel tired?? Just hoping it will work.

    Anyway, ask your medics for the Anti-CCP test. My GP couldn't do it but the Rheumy does. Whether this is regional I don't know. They do have to send it away I know.

    Good luck and keep me posted.

  • Hi Tilda,

    Sorry, I never had visible swelling to start with, redness or heat but my Rhuematoid factor was 1210, crp 96, PV 1.96 and could only 'shuffle' when I went to first consultant appointment, I noticed my consultant watch me from when I got up in the waiting room until I sat down in his office, as I sat down he confirmed that I had RA! this was followed by an ultrsound (I don't understand why you never got this) and you couldn't miss all the swelling then, an anti-ccp test was taken and he checked several joints.

    I was given a DAS score (Disease activty) then he discussed how he intended to treat me. I have seen him monthly and now almost 6 months to the day I have started Enbrel without delay(after failing 3 dmard's)

    I feel that because of the efficiency of my consultant and his team my prognosis is much better.....

    It must be hard not knowing, it's great you are being so pro-active :)

  • Same as me Zena, remember her watching me shuffle in totally scared, totally clueless! Your experience exactly like mine, my RA factor was v high, & CRP 98 - ugh poor us! Its totally wrong the way Tilda being treated, I firmly believe in early aggressive treatment, what is all this dithering? she has elevated inflammation in her blood and a positive factor for RA, what do they want to wait for joint damage, I am so annoyed for her! Tilda get a second opinion & get a new GP, or at least ask what is causing you to feel like this if not RA? (in my opinion!)

    My success with my RA is due to the efficiency of my Consultant too.

    It is a very fast damaging condition and current thinking is staring first Dmard within 12 weeks of diagnosis improves chances of controlling disease,

    Tilda fight hard for yourself.

    xxx Gina.

  • Hi Gina, Funnily enough I've just been talking to my visiting aunt about this and she agrees with you that things are moving far too slowly for me Wish I'd spoken to her yesterday about it all but because her daughter also has it but is in denial I imagined that she would think me too hypochondriac for words! Far from it - my aunt is bipolar and has been all my life and says she would be long since dead and gone without this label and being able to access appropriate medication and support. And she has now got to know me a lot better and says that I'm so "honest and sorted"(?!) that any doctor would be nuts or bad to not realise that I would want the facts asap to get on and deal with whatever i'm diagnosed with.

    Can't blame my GP though - who said he thought I had RA right from the start and treated it with Sulfasalazine immediately. It's not his fault that the system here is lazy and ineffective - he claims to be very frustrated for me. At least, unlike Babs, I had a GP who referred me straight away and wrote a letter also?

    I'm so fed up. All the pain is there now and the feeling of swelling is constant in my feet and yet zilch still - over 2 weeks since my rheumy appointment and anti-ccp test was done. Ah well come Monday morning I'll go and hassle my GP once again. But as I've already said, and unlike you and Zena and Gina, my RF was only a low positive (24) and inflammation only raised to between 58 and 44 and those figures don't suggest RA overwhelmingly I suppose? Also on the day itself I was fine so walked in normally and even hands weren't playing up too much that day. It usually kicks off later on for me in the evening like now. I feel this is because I sleep SO badly that I move around all the time and never get a chance to stiffen up. Whereas by evening I'm done for.

    Do you think it's strange that the anti CCP test results are taking so long or if he has them the consultant hasn't decided what to do about me? My aunt says in France all these tests take 24-48 hours and you collect them yourself and take them to you GP so none of this prolonged waiting and worrying.

    Thanks for being indignant and sympathetic and generally there for me though - I really don't know what I'd have done without you - all for these past weeks honestly!

    Tilda x

  • Thanks Zena - I'm waiting on the results of an anti-CCP test that was taken after my consultation a week ago yesterday. My GP said he would phone me when he gets the rheumatologist's letter. I think it's just a bit frustrating now because I'm trying to prepare myself to be told that from anti-CCP I have RA or that I am still just inconclusive person with negative anti CCP who may or may not be developing it.

    Ideally I'd be told that I had a post viral thing that will eventually go away but failing that I'd prefer to be told I had mild RA than still left hanging like this. Best of all for me to wait for another proper visible flare before MTX because my understanding of it is that it's the inflammation that causes the damage - not the pain? And if it's that and i've nothing visible then perhaps it's just a very slow acting non aggressive form of RA that requires no immediate treatment. That's how I think I could manage but after 3 weeks on sulfasalazine I really dread any more drugs I confess. And yes Williby I know that all this heat might be the inflammation at work in more subtle form - that's what I feel but rheumy and GP did not look convinced. Last ESR reading was 44 two weeks ago on Monday. Not very high compared to yours really!?

  • HI again,

    Just remembered something, a positive RA factor result can also indicate a viral infection (sure I read that somewhere), when I had blood test for the RA factor both husband and baby were recovering from swine flu, I wonder if that was mine was so high, point is still hopeful for you that it may be just that. A friend of a friend had viral RA for around 8 months, she had the same symptoms as myself.

    webmd.com/rheumatoid-arthritis/guide/?rheumatoid-factor-test

    this site highlights other causes of a positive RA factor test but don't think it mentions the viral....I'll scarch head for a while see if I can remember where I read that.....

    CPR and ESR readings are different, but I guess your ESR is higher than it should be, Lyn has a great blog regarding blood tests.

    Like your pict! i'm way too shy to put a pict on :)

  • ha ha i don't know what came over me putting my photo on here but I kept seeing Julie's pic and feel I relate to her so i felt that it would be nice to do the same back. I may lose my nerve again and replace self with our gorgeous dog though. He gets far more admiring glanes than I ever do!

    Thanks so much Wiliby you are a star really for helping me with a bit of research into other possibilities. I don't know what my ESR readings mean and can't find much help now because they all appear to be measured differently and unfortunately I've lost the copy of my bloods when I gave the print out to the rheumy - should have photocopied first - so I just have these general numbers starting at 58 and then finally 2 months later at 44. Vaguely know that normal is 0-10 but also realise it can go up to 300 or something!

    I would like to be able to go for the post viral option and also met a chap who had had PV arthritis that lasted 2 years - but he was walking about all spritely and had come out the other side in the all clear and rude health - so it was inspiring for me at the time. But that was back in May when I could hardly walk and hadn't had the RF positive so was convinced it was PV arthritis and I was going to get better soon.

    The thing that gave me a reality check was actually clocking this deep heat which I have had for over a year now in wrists and other joints - usually symmetrically. I know Julie has had this too as a post menopausal thing. My GP said it could still be a mid menopause hot flushy thing but it would not explain the sore joints or positive RF and the raised ESR levels apparently, so no point in running hormone level checks again he felt. I was trying to push him in other directions but he was adamant that it is a rheumatology/arthritic thing. And if it's hormonal then why is it only around the joints that are sore or downright painful?

    If this was post viral then what about this weird deep heat which came long before? I too had what I think was swine flu last October and 2 other nasty bugs in succession and I had to travel and teach in between all these so was very up for this PV explanation, having got myself excessively run down by end of 2010. But not so sure any more.

    Well fingers crossed - except i can't really - not today! Had a walk with dog on beach though and the sand was all sinky and quite pleasant on my boiling feet but now raging and sore again. I thought to myself that if I ever move I would research good GPs, friendly and skilled rheumatologists and hope to move away from this idea that I have to have a giant swollen joint in order to go on a video link in order to get a diagnosis - Raigmore sounds good down your way Wiliby so not ruling Inverness out!

  • Thanks to you all for relaying your own experiences and thoughts on this matter of invisibility and beyond!

    Really grateful as it's helping to keep me grounded and realistic about my prospects while not allowing me to get too pessimistic because there's always hope that it isn't RA and if it is I know I've got myself a new set of very nice and interesting friends. I genuinely feel I'm lucky really because so many get all this worse or earlier in life -after giving birth or earlier in childhood - whereas at least I've had 48 years of my life without all this bizarre pain to bear. And learning to pace things better it is an art that I'm sure will suit me in other ways too.

  • I brought up the virus and alternate reasons for my RA with Consultant in early days, she was having none of it, and I could'nt afford to take the chance, I felt so rotten and so much pain. I know there is a denial phase and Tilda I understand totally when you say you had 48 years without bizarre pains, I really know what you mean coz I had 47 years of it, life can be good with RA don't be frightened, whatever the outcome, RA is'nt the same life sentence it used to be there is great treatments out there & as my Consultant told me if one does'nt work another will, and this proved correct, it just took a while but allsgood now. :)

  • I'm in no Man's Land Gina but certainly not in denial. I'm neither one of you but nor am I not one of you so probably arrived here on HU too early but it's pretty lonely here so having you all here has got me through so far. I told my GP about this forum and this question to try and impress on him that others with diagnosed RA have had pain but no visible redness. He didn't seem to mind and admitted he thinks I probably do have it - he's a bit impatient to hear back from the rheumy too but it's only been 9 days and guess things are slow because it's summer holls re blood test lab results, rheumy himself, chest x ray etc. This sounds weird but I'm really hoping the anti CCP is positive because anything else would just prolong the treatment and uncertainty and I'm in too much pain a lot of the time now to cope with not being believed? I just want to be allowed to face up to the b****r properly as is my way!

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