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Legs feel heavy

Posted , 13 users are following.

andrea93419
andrea93419

Hi All!! I've been on 17.5mg pred for 10 days having dropped from 20mg and my legs feel 'heavy' when I'm walking and they seem hard to lift them! I've not stiffened up at all like the original symptoms of PMR but should I be concerned that this heaviness will turn to stiffness again???

3 likes, 23 replies

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  • pat38625
    pat38625 andrea93419

    Posted

    Hi Andrea, just reading your post about the heavey legs.  You brought it all back to me.  I remember even as a very young girl compaining to my mum about my thighs were sore and I remember her taking me to drs. and it was put down to growning pains.  But then later in life, well January 2001 I was diagnosed with ME/CFS and that  was one of the things I remember (when I could walk) that my legs were so heavy and I used to say that I had Divers Boots on.  My legs were so so heavy and there were times I would and still would happen that I would fall up the stairs.  I am surprised I haven't broken a wrist yet.  So I wonder was the heavy leg syndrome, or ME a precursor to PMR just diagnosed November.  It's interesting.  Food for thought.  
  • paul45653
    paul45653 andrea93419

    Posted

    Just had a lower extremities circulation/BP test with excersises comparison to try and eliminate circulation/claudication causing my problem with walking. My comment concerns the tech asking me to describe the pain. She asked if it was an ache a pain etc. this discussion finally answers it. It is Heavy Legs. Thanks. 
  • debbie27473
    debbie27473 andrea93419

    Posted

    The insight this site gives is amazing. I also have had these 'heavy legs' for a few years. Looking back, it would seem that this was my first pmr symptom. I am on a reduction programme and reduced to 7.5mgs two weeks ago. My legs are not only like lead but also very stiff, especially after sitting/lying down for any length of time. When I get up, I have to stand still to stretch out before I can walk forward. Then I sort of shuffle for a bit. My left leg is the worst. Some days, I get to the bottom of the stairs and look up and they look like 'Everest'! It's only the fact that our loo is upstairs that forces me to make the effort! Yesterday I also started getting the pelvic girdle pain again that was one of my original symptoms. Don't think I will be reducing any more for quite a while. Thank you everyone. Once again you have all helped me to put things into place. Take care, Debbie. 
    • EileenH
      EileenH debbie27473

      Posted

      You have probably gone too far in your reduction. What size steps were you using? Below 10mg you should be using 1mg steps at the most or you will miss your endpoint: the lowest dose that manages the symptoms adequately. The pred hasn't cured anything, it is managing the inflammation to relieve the pain and stiffness it leads to. You cannot use a "reduction programme" unless it takes that into consideration.  What you are describing is typical PMR stiffness and myogelosis - you are now on too low a dose, you need to go back to the last dose that you were comfortable at and then reassess the reduction. Leave it alone and you risk being back where you were.
    • debbie27473
      debbie27473 EileenH

      Posted

      Thank you Eileen. I will follow your advice and go back to 8.5mg from tomorrow. I seemed ok on that. How long do you think I should leave it before I try again? The rheumy won't be very happy. His last statement to me was 'When I see you in June, you will be off the steroids altogether!" 

       

    • EileenH
      EileenH debbie27473

      Posted

      Did he offer your PMR the same instruction? It will go when it goes, then and not before! Until the autoimmune disorder burns out and goes into remission you need some pred to manage the effects and allow a decent quality of life. You cannot force yourself to a lower dose - it simply won't manage the inflammation, you either need enough or you needn't bother, not taking enough is pointless as you get side-effects without any benefit. There has to be a balance of up- and downsides.

      If you were down to 7.5mg this week and were to be off in June - whatever sort of reduction were you following? Apart from far too fast!

      Once the symptoms have all calmed down again try the slow reduction here:

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

      1mg at a time if you must, 1/2mg at a time is better. You may manage to get lower doing that - or you may not. What you should be able to be confident of using the slow reduction is that it isn't due to steroid withdrawal. 7 or 8mg is also the point at which your body has to start making its own corticosteroid, small amounts at first but it can also be enough to cause stress on your body and stress and PMR don't mix. Even travelling or visitors can be enough to mess up a reduction - even if they are enjoyable.

    • christine_fay
      christine_fay EileenH

      Posted

      I have had five autoimmune disorders over the past 15 years... two at once lasted eight years before remission but that was because no diagnosis was made or treatment begun. Once treated it went quickly, however the physical damage and the toll it took on my life was appalling. They have so far not not returned. After that I had Graves Disease which took two years and them remitted. Psoriasis again took two years. Colitis is a recurring problem if I don't balance my diet. But nowhere near what it was to start with.

      I am hopeful that this horrible condition will also remt, however I worry what the hell might come next to replace it... It's like the Ten Plagues of Egypt!

    • EileenH
      EileenH christine_fay

      Posted

      You are a living example of having one autoimmune disorder making you more likely to develop another. But I think you really have drawn several short straws!
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