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Waiting for diagnosis

Posted , 9 users are following.

Tastyron
Tastyron

Hello all. About seven months ago I started feeling weird "things"in my legs which evolved fairly quickly into severe hip pain. Had X rays which showed "normal wear and tear". Pain then started in my shoulders which have always hurt so didn't notice it straight away until the pain stopped me working about a month ago. I now have pain in my knees, hips, shoulders and wrists. I have always been fit and sporty but feel like a 90 year old, I am 59 by the way. Went to a rhuemy who said it isn't arthritis ( which I'd thought myself any way). Gave me a shot of steroids, one in each shoulder, one in the rump. I was pain free for a week then it was back just as bad.My sister in California asked if in been tested for PMR, I'd never heard of it so started googling furiously. Reading about the symptoms, it was like i'd written it down. Went back to Dr who said he tested back in August but tests were ok. He's taken more blood and I'll get the results in the next couple of days. Is it bad that I'm hoping that it is PMR because if I get on Pred and can live without this constant pain and stiffness would be a great Christmas pressie.

Sorry about the length of this post but nobody here realises how bad this pain is but I have an inkling that you people do.

Regards Ron.

 

0 likes, 16 replies

16 Replies

  • karen64766
    karen64766 Tastyron

    Posted

    I was diagnosed 6 weeks ago so I feel your pain been on prednisone 20 mg a day does help with the pain but going down slowly very bad day yesterday so been up most of the night

    I like you do not know what to expect from day to day but this web site is wonderful

    Hope you feel better soon

    Karen

    • Tastyron
      Tastyron karen64766

      Posted

      Thanks for taking the time to reply to me. Don't get me wrong. I'm not expecting a miracle but anything better than what I'm feeling at the moment will feel like pain free to me. 

      I think I've taken more painkillers this last fortnight than I have in the whole of my life so far. Not good. Hope you get through this soon.

      Ron

    • tavidu
      tavidu karen64766

      Posted

      Hi karen. If you have only had PMR for 6 weeks and you have already started to drop slowly I suggest you may have reduced to early. If you are still feeling pain go back up to 20mg (or even higher if pain is still present) and stay on that level for 4 to 6 weeks to allow the preds to work, then reduce by 10% every month. Slowly is the best method. Good Luck.
  • tavidu
    tavidu Tastyron

    Posted

    Hi Tastyron. Blood tests are not necessarily indicators for PMR, some on this forum advise that their blood is normal but they are still in pain.

    I have had PMR for 18 months and the preds certainly keep the pain to a minimum but drop to quickly or as I did a few weeks ago and forget to take them and 24 hrs later its back with a vengence, even though my blood tests show normal. Your symptons certainly sound like PMR so hopefully the doc will get some indication in your results. You will read on this forum how to cope and will find it very useful. Good luck.

    • Tastyron
      Tastyron tavidu

      Posted

      Thanks for taking the time to write. Yes I've read that the bloods are not a good indicator but my Doctor wanted to do them again, fair enough. I will definitely ask him to trial me on some Pred as I myself am convinced that it is PMR. I have read avidly and will try to stick to something like the Bristol plan. Before I'd stumbled across this illness and this site, I thought I was going mad as nobody could tell me what it is. Just having a name to put to it has eased my mind and taken some of the "depression" away if you know what I mean.

      Ron.

    • tavidu
      tavidu Tastyron

      Posted

      You are welcome Ron. Some of the side affects of preds are not very pleasant but we all seem to manage to deal with whichever ones we have. The way most of us deal with it is to accept that we need prednisolone as it is currently the only medication that takes the pain away but that is all it does, it is not a cure. There are quite a few fellow sufferers such as Eileen that know exactly what we all go thru and have studied PMR so there is a lot of help on this forum so stick with it and we will all get thru it together. Good luck.

  • Silver49
    Silver49 Tastyron

    Posted

    As others have said it doesn't always show up in a blood test. I thought it was old age when I experienced the symptoms you have described and put it down to that and what I was doing at the time. I had PMR for a long time before diagnosis.The prednisolone had the desired effect very quickly. Be aware, I was euphoric with it at first and rushed round doing masses of housework etc. I paid the price and now pace myself. I complete tasks but take rests in between. It's like the car which overtakes mine and then several miles down the road it's the car in front of me at the traffic lights. It rushes off again and is still the one in front having used up more fuel and frustration than I did! I hope you get sorted out with a diagnosis.
  • Anhaga
    Anhaga Tastyron

    Posted

    I am so sorry to hear you are having trouble getting a definitve diagnosis.  If it is PMR your pain is really treatable with prednisone and you will feel better quickly.  It is unfortunate that the treatment comes with its own set of charming side effects but with care most of those can be managed quite well.  One of the lovely things will be the ability to do everything again - and that is where you'll have to be careful because you won't really be cured, it's just that the inflammation which causes the pain will be in check.  You are entitled, indeed required, to play the invalid a little bit.  Don't give up your physical activity, indeed that is very important, but don't get carried away and do a lot of things just because you now can.  Give your body time to recover and pace yourself.  Hope you feel better soon.
  • LayneTX
    LayneTX Tastyron

    Posted

    Hi Ron,

    I'm so sorry you must join our group, but yes, nice to get more real info from those experiencing this... It was so scary when we first got the incredible pains and not knowing...well, I still feel I don't know why this happened to me, but pretty sure it was the extreme stress I was under. 

    I just want to chime in and say that the pain doesn't go away for all of us. Some are lucky.  I've still been in 70-80% pain in mornings, then after the Prednisone kicks in my pain drops to 40-50%.  Nothing compares to the 100% pain.  My SED rate then was 80! Later dropped to 6, but been hovering around 16.  I Just passed my 1 year mark. I'm at Pred 6 mg and holding, 

    My worst symptoms from Pred is silent acid reflux.  Didn't know I had that, now I have dry mouth, raw tongue and my esopagus is irritated even when drinking water.  So I recommend probiotics (pill form) and take Pred during meal in morning.  Some here do dairy, but my doctor said no to dairy products.  And of course now take calcium 1200 and vit D 2000 (as I was low when I got PMR).

    I also lost my taste, now back about 80%.  So take care of your gut. wink 

  • EileenH
    EileenH Tastyron

    Posted

    If your "blood tests are OK" I assume you mean ESR and CRP? They are normal in about a fifth of patients with PMR (some top experts disagree, claiming more like 10% and that most people have a raised CRP, I know a lot who don't). The blood tests are only one factor - it should be a clinical diagnosis on the basis of symptoms (multiple ticks) and response to pred (tick).

    Your response to steroid injections is not uncommon - quite a few people get a diagnosis when they are given a shot for a bad hip or shoulder and realise that a load of other problems improved too! If your GP won't accept that - find another who will! you wouldn't be the first to have to do that either.

    • Tastyron
      Tastyron EileenH

      Posted

      Thanks Eileen. I find myself in a fortunate position that I discovered this site before I start my journey.

      I've already accepted that Pred will be a freind, as long as you keep an eye on it. 

      Some site this isn't it?

      Ron.

       

    • Anhaga
      Anhaga Tastyron

      Posted

      We are really fortunate to have people like Eileen and a few otheres who share so much excellent information.  <3>
    • EileenH
      EileenH Tastyron

      Posted

      It was this site that sowed the seeds for the support groups in England - there was already a set-up in Scotland. Five women "met" here and got together getting on for 10 years ago. The result was a couple more charity groups - and more on the way. I came along later - but am also now part of the patient side of research as well as being active on all 3 forums - this is only one!
    • Tastyron
      Tastyron EileenH

      Posted

      Thank you Eileen, I've read a fair bit about you whilst browsing this sie so feel l know where to go for info.

      My ideal would be go onto 15mg and follow the Bristol plan but realise that it will be an up and down relationship. I am still reading through the site so I'm not going to expect the best but any improvement will be a good starting point. It's a comfort to know that I am at least well informed. 

       Many thanks 

      Ron

    • Tastyron
      Tastyron

      Posted

      My doctor phoned with the results of blood tests. They were taken in August and were single figures. Today, ESR is 50 and CRT is 68.

      I have an appointment with the Rhuemy on Jan 4th but my Dr will phone tomorrow to see if they can get me in sooner, if not he'll have to give me "something". Will phone him and pester him to get me on something sooner than later. My wrists are starting to hurt as well so as soon as I get started the better. Funnily enough, I feel a lot better just knowing.

       

      Ron

    • EileenH
      EileenH Tastyron

      Posted

      That's quite common - knowing there really IS something going on is an affirmation that it isn't "all in the mind" - which is a very popular note on a woman's file when the doctor doesn't know!

      Pred would be a good start for your GP - what other tests did the GP do? Muscle enzymes? If they were high it would suggest something else - but the management is still pred, though usually a higher dose.

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