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Work and polymyalgia

Posted , 8 users are following.

george82764
george82764

Morning,

i am am hoping that someone may be able to provide some feedback for me if possible.

i was diagnosed last October ( I am now aged 50) and initially I was off work until mid January. I then went back to work on a phased return until I was doing a five day week. 

Unfortunately that hat has not lasted very long and I away signed off again two weeks ago and due to return to work this Tuesday even although I do not feel any better.

my first question is, is this typical of others with this condition, I'm worried that it might be me not trying hard enough or am just lazy ( until I got this nobody could ever say I was lazy)

my second question is, does anyone else find that in the morning it can be sore to walk because of really bad pains in the feet and hips ?  In addition I find that until the afternoon my neck and back are also painful.

any feedback that anyone can provide would be appreciated. 

Thanks, George.

3 likes, 16 replies

16 Replies

  • tina-uk_cwall
    tina-uk_cwall george82764

    Posted

    Hello George, I'm sorry to hear that you are feeling a little out of sorts.

    firstly, if you are not feeling any better, visit your GP and speak with them. Hopefully they'll sign you off work for a while longer, or hopefully until there is some measured improvement to your health.

    secondly, as you know one of the symptoms of PMR is fatigue, and one of the side effects of prednisolone is fatigue, put the 2 together and you've got double fatigue because preds only help with the inflamation side of PMR. You are not alone, many sufferers on this forum prior to PMR symptoms were active vibrant individuals that like you have had to come to terms with fatigue and exhaustion. 

    Yountalk of pains in your feet, hips, neck and back? Is this pain the same sort of pain as pre diagnosis, I ask because if it is, it could be that you are on too low a dose of preds and therefore the inflamation that in turn causes the pain is not sufficiently under control.

    there is also the possibility that if the pain is completely different from the PMR pain that you are also suffering from another condition that does not respond well to either low doses of pred or pred full stop. It is possible to have multiple illnesses as well as PMR.

    what is your GP like, and what has your pred tapering regime been? I am not medically trained so am only speaking what I think, hopefully Eileen will be along soon with more grounded advise. All the best, christina 

    • george82764
      george82764 tina-uk_cwall

      Posted

      Hi Christina,

      thank you for your insight, the pain is the same, I started out on 15mg per day, all taken in the morning. I was advised to reduce it by 1mg each month by my doctor and got down to 10 but I have had to put it back up to 12 a few days ago but still no improvement. Thanks, George.

    • EileenH
      EileenH george82764

      Posted

      Do consider the "Dead slow and nearly stop" reduction scheme in the replies in the link I gave you - but also the "Bristol paper" and the reduction they suggest. But reductions should always be on the basis of symptoms and doctors do need to remember people who work need a bit more.

      I found it took me a good 6 months for the hip and foot pain to fade and I was on more than 10mgs the entire time. Later I had flares that meant being well above 10mg for months - but I did get a lot of relief from using Bowen therapy and having local cortisone injections for the hip/back problems that were making the general PMR worse.

    • george82764
      george82764 EileenH

      Posted

      Thank you Eileen, on the basis of the replies from everyone this morning I took another 3mg and am now going to maintain my dosage at that which was originally prescribed (15mg) for a month or two then I will start reducing 1mg every four weeks.

      i haven't got a clue what I'm doing but I am going to try this, thank you again. George.

    • tina-uk_cwall
      tina-uk_cwall george82764

      Posted

      Hi George, as Eileen says look up the Bristol PMR plan, then when you reach 10mgs follow Eileen's dead slow and nearly stop tapering regime. I use this method of reduction but reduce even less, only .5mg each time as opposed to 1mg drops. Also I always stayed on each dose for a minimum of 6 weeks not 4 weeks, that way I really left the preds to really do their work. Good luck, christina 
    • george82764
      george82764 tina-uk_cwall

      Posted

      Good evening Christina, thank you, I will need to ask the doctor for 0.5mg steroid pills as all I was given on my prescription is 5mg and 1mg pills.
    • tina-uk_cwall
      tina-uk_cwall george82764

      Posted

      Good evening George, no need. Prednisolone does not come in .5 tablets. It comes in the 5 and 1 mg pills that you already have on prescription.the 5mg tablet is manufactured with an indented line. I use a pill cutter, you can purchase one from any pharmacy store, or a very sharp knife, to slice the pill in half. That's how I achieve the .5 dose, eg, dose of 8.5mg I have 1x5mg, 1x1mg and 1/2 of the 5mg pill. A tip, if you use a pill cutter, ensure the cutter blade is absolutely inline with the pills indented line, otherwise the pill doesn't cut in half properly. Good luck.
    • george82764
      george82764 tina-uk_cwall

      Posted

      Hi again Christina, thank you for that, I feel a bit stupid now, but on the positive side I have learned something new.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey george82764

    Posted

    George, yes your description of your experience with PMR is very typical of others with this condition.  Those of us who haven't had to work with PMR and/or GCA, are always in awe of those who manage to hold down a job with this condition, especially in the early months.

    Again, yes, many of us find that we are worse in the mornings until our daily dose of Pred kicks in, and the time this takes can vary from person to person.  Your experience of pain appearing in your neck and back during the afternoon may be because you have been doing too much.

    You haven't said what your steroid starting dose was or how you have tapered thus far.  It could simply be that you may not have remained on your starting dose long enough, or have reduced in too large amounts to get complete control over the inflammation and keep it there.

    Don't ever fear that you are being lazy - in fact you need to be lazy!  PMR doesn't like stress, whether physical or emotional, and your probably suffer both if having to work and battle through the pain.  

    You would be wise not to return to work on Tuesday if you don't feel any better but to have a further period of sick leave, and, if necessary, increase your steroids to whatever dose has kept you more comfortable in the past.  Then you must rest and not overdo things on a good day just because you feel you can - the steroids are not curing anything, they are just damping down the inflammation until PMR goes into remission, and that can take anything from two years upwards.  Hope that helps, but do come back and let us know how you get on.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey

      Posted

      I also meant to add that although it is recommended to take the steroids all in one go first thing in the morning, a few people have found that splitting their dose, two-thirds in the morning and one-third in the evening has helped to relieve their early morning pain.
    • george82764
      george82764 MrsO-UK_Surrey

      Posted

      Good morning Mrs O, and thank you for your response, my starting dose was 15 got it down to 10 but had to increase to 12 a few days ago but think I might have to put it up again.

      it is re-assuring to know the tiredness is not just me. George

  • EileenH
    EileenH george82764

    Posted

    Yes - I had bursitis in hips and sore feet as well - it felt like walking on sharp pebbles or broken glass but wasn't just in the morning it was every time I stood up after sitting for any length of time. 

    The general description you have given sounds very much to me as if you are not on high enough a dose of pred to manage the inflammation and you are probably not using what you have optimally. You don't mention your pred at all - you are still on pred aren't you? PMR is a chronic illness - PMR is the symptoms of an underlying and ongoing autoimmune illness, similar in a lot of ways to rheumatoid arthritis but not damaging to joints in the same way, and as long as it is active you need a maintenance dose to control the inflammation. This is management not cure.

    As has already been said - this isn't an illness you can "try harder at managing"! You need rest and to learn to manage your resources - and I do realise the constraints of working. If you have to work - you probably need a bit higher dose of pred than if you are not working. It also greatly depends on what your job is.

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    This link takes you to another thread on this site with links to places you will find lots of sensible and reliable info. It also describes a reduction plan of the sort that works.

    • george82764
      george82764 EileenH

      Posted

      Morning Eileen, thank you for responding, yes I am still on the steroid and I will now increase the dose to get back to work. Thanks again as well fir the link. George
  • andrea93419
    andrea93419 george82764

    Posted

    Hello George!!,, I have the same dilemma as you, I've been off work since January with PMR and I'm due to see my company doctor for the second time on the 18th May for a review. My rheumatologist serms to think by the end of May I could return to work, however he doesn't realise that I work on a moving train travelling at 125mph, on my feet for a 3 hour journey with 45 minutes rest then another 3 hour return journey!!!! I don't think I'm physically and mentally fit enough to endure that on a daily basis!!!! I'm feeling very stressed out about this which isn't helping my condition! I feel for you too!! Andrea xx
    • tina-uk_cwall
      tina-uk_cwall andrea93419

      Posted

      Hi Andrea, you need to explain in the strongest way possible the type of work you do. In the late 80's I worked as a stewardess on the cross channel ferries. I had an accident at work and the result was a collious (spelt wrong) fracture. My GP after a period refused to sign me off work as he said that although I might not be fit enough to do my job I was fit enough to do a job and therefore my employer should find me appropriate work in the meantime. I hardly made things easier when I replied that if he was found to no longer be able to do his job, would he settle on a job as a porter! Luckily for me my appointment to see the company Dr was due, and he said that there was no way I was fit enough to do my job. I told him what my GP had said and he just came right out and asked me if I wanted to return to work shoreside duties. I said no and he said that there was one way round this and that was to sign me off as permanently unfit for current duties. I was happy with that and was paid off by the company on grounds of ill health.

      it is a tough decision but if you are in a financial position to be able to go down that route, that is an alternative option.

      good luck with the company Dr, who as far as I'm aware are required by law to put the welfare of the patient first and are not bound by company or employer pressures. Regards, christina 

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