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General malaise - is this usual?

Posted , 5 users are following.

Janetta
Janetta

I was diagnosed with PMR by the GP - i guess I was lucky. The symptoms were typical - muscular pain in shoulders and upper arms, inner thighs, unable to get out of bed, out of a chair, night sweats, etc so it was a no brainer. He gave me 20 mg Prednisone before I left the surgery and by the evening I was practically pain free and continue to be so - even masks my poor old osteo arthritis aches and pain.

I would feel great if I wasn't so tired. Some days are better than others, on bad days I rarely leave the couch, on a good day I have periods of high activity followed by a desperate need to have a sit down. Any one else have this problem? Does it go away gradually? I've only neen taking the Prednisone for 3 weeks - 20 mg per day and haven't yet had a follow up ESR. What have you all experienced?

It's wonderful to have a website like this. With symptoms so varied it's hard to get a straight answer from your doc, but at least you can check in so see what other people are experiencing. I'm absolutely shocked to read the number of people who were not diagnosed immediately, even with classic symptoms.

0 likes, 6 replies

6 Replies

  • Guest
    Guest

    Posted

    Hi Janetta,I put post on the site a few days ago and have been in touch with the pmrfighters group,very helpful indeed I recommend you get in touch too. I think the tiredness is all part of this condition, I've been on steroids for around six weeks now,starting on 20mg and reduced to 15mg after 3wks.Felt much better till dose was reduced then had some pain again though not as severe and felt the fatigue creeping back.Seeing consultant again next week to review dose.After 3wks my ESR had gone from 135 down to near normal,so will see what blood tests reveal this time on the lower dose.
  • Guest
    Guest

    Posted

    Hi, I thought you might like to know that both my friend and I had similar problems when we first were put on steroids - she has Sarcoidosis and I have PMR but we both found in the early stages when we were on doses of 20 mgs + that we had days when we so tired we couldn't move followed by 'hyper' days when we felt full of energy and could rush around getting all sorts of stuff done. She came off the steroids after four months but was still on a high dose so always had this. I have been reducing steroids very slowly (am down to 2 1/2) over a year and am finding this has calmed down alot. For example I have only had three days when I really just needed to rest/sleep during the day over the last 10 - 12 weeks. Also the 'hyper' days are much more subdued and far fewer between. I do think that although the PMR does bring with it fatigue and it is necessary to pace myself, the swings between extreme tired ness and hyperactive energy is a side effect of the steroids. Certainly this is not nearly the problem it was for me 12 months ago. I would be interested to see how you get on as well. Good luck.
  • Morwe
    Morwe

    Posted

    Hello Janetta

    Yes I am sorry to say this is quite normal.

    I have had pmr for 18 months now and have been gradually reducing my steriods over this period. I have just recently had several weeks feeling tired and lethargic. My dose of steroids has not been sufficient to suppress this symptom of PMR. My dosage has now increased and the tiredness has gone.

    It is also very true that often while keeping to the same dose you have good days and bad days. You learn to recognise your limitations and understand that if you do too much you will feel this way afterwards. You have to judge if the activity is worth the later discomfort - sometimes it is!

    I am one of the prmfighters and like you live in Somerset. If you would like to get in touch with us

    Best wishes and good luck

  • gillb
    gillb

    Posted

    Hi - your topic of fatigue and PMR came at a very appropriate time for me. After being struck down with PMR in May and starting steroids in June I am gradually improving - ( not fast enough for me) - and am now able to move - but still feel wooden in some movements ie getting down to the floor and trying to move quickly! - but it is the fatigue that is really debilitating and that is preventing me from returning to work at present. I was beginning to feel it was me!! so to hear that many of you have the same variability in fatigue levels has really helped.

    My consultant has increased my steroids back to 12.5 mg although I had reduced to 10mgs - but he says he wants me to consolidate at 12.5 mg until January to ensure no reoccurrance of inflammation. Although I was concerned that it was possibly the steroids that were making me feel so fatigued, he assures me that I would have had to have had a much higher dose to make that happen and says the fatigue is just part of PMR. I look forward to hearing from you that eventually the fatigue gets better - Please let me know!

    Gill

  • mrs_k
    mrs_k

    Posted

    Gillb

    Yes it is - but to go without a check until January is a bit unusual. Monthly checks seem to be the normal. My GP checked each month and steroids where reduced. Read the side effects on the leaflet that comes with the steroids and also do you carry a blue card with you.

    I have also been advised to increase my intake of anti-oxidants, these are found mainly in berries.

    My consultant is a Rheumatologist and has booked me in for a bone density scan.

    If you go to the index - under Moved - Self help/pressure group

    You can have direct contact with pmrfighters, as well as this site.

  • Janetta
    Janetta

    Posted

    Well, still struggling with tiredness. I am gradually learning to pace myself but as someone suggested, if you really want to do something you must pay the price. I've managed to visit my daughter for a weekend and just returned from London to visit the Terracotta Warriors. After each occasion I was absolutely done in, spent some time (2 days) 'relaxing' on the sofa, but both trips worth it. My GP was surprised I was still getting symptoms (besides tiredness the muscles in my arms and thighs are tender) and upped my cortisone to 25 mg - he didn't seem to think the tiredness was due to the meds. I'm not so sure. He says he will refer me to a rheumatologist if symptoms don't improve.

    I'm still not sure my friends understand this sudden need to retreat into my shell. How do you explain?

    Has anyone told their doctor about this website? Next time I visit I think I will tell him about it and 'fess up to being Janetta.

    In the meantime, I'm heading off to join the PMR warriors as suggested by another kind correspondent. Thankyou all you lovely people. And yes, I would like to meet other local sufferers - I know you will understand!

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