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Seasons Greetings

Posted , 16 users are following.

tina-uk_cwall
tina-uk_cwall

Hello everyone,

It's been a year now since officially being declared in remission from PMR. Emotionally and mentally it's been a great place to be. No more preds! Slowly throughout the year I've lost a stone in weight so I'm moving about more and a lot easier but it hasn't all been plain sailing. Whilst on the very low doses of preds I noticed pain appearing in my right hip that over last Christmas was unbearable. Following visits to the GP I was referred to a physiotherapist who declared that there was absolutely nothing wrong with my hip but my problem lay with my right side lower back muscles. I was given a strict daily regime of exercises to follow and the pain has improved no end. Obviously I have the odd day especially when I've over done things but on a subsequent visit to my GP he did ask if I'd suffered from a right hand side back issue in the past. I replied I had many many years ago and he immediately replied that whilst on reasonable levels of preds these drugs were able to mask any inflammatory issues with these damaged muscles but once I reached very low levels and then none there was nothing helping this existing injury. He added that the combination of the pre existing injury (that was basically long term damaged muscles) plus the weakness caused to the muscles from the PMR and the preds it would take a while for them to become strong again and that my daily gentle exercises would probably be necessary for a long while yet.

I'm telling you this story because it's important to understand that not every pain we get is a symptom of PMR. Because the condition and the medication weakens our muscles to a degree old existing injuries are more likely to be exposed, but that correct gentle daily exercise could help enormously.

Obviously I'm hoping to continue losing more weight and at the same time work to get myself healthier by more gentle exercise.

My PMR journey was peppered with diagnosis mistakes initially but once under a consultant who by the way embraced the dead slow and almost stop method of reduction was not too bad an ordeal. I was diagnosed at 52 and my journey in total including 2 flares took 5 years, so there's hope for everyone. But, as Elaine always says the condition dictates the level of medication and not the medication that dictates the condition. These forums helped me enormously and I still read members posts and I'm so pleased they're here with members who offer wise words and advise.

All that remains for me to do is send you all the warmest of Cornish Best Wishes for Christmas and the Coming New Year. With Kind Regards, Tina.

7 likes, 19 replies

19 Replies

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  • jean39702
    jean39702 tina-uk_cwall

    Posted

    It was wonderful reading your post. Congratulations on becoming a member of Club Zero!

    I've been on the journey for over 4 years and although it took some time, I came to recognize the pains from bursitis, myofascial pain, and the pain from simply overdoing it. However, I appreciate the warning about the effects of hidden and untreated muscle inflammation and will endeavor to keep at those routine, but too often ignored, exercises.

    Wishing you continued success in your recovery.

    Merry Christmas and Happy New Year!

  • Tinapoly1
    Tinapoly1 tina-uk_cwall

    Posted

    Hi Tina, My name is Tina too. So glad that you are off the prednisone but I was praying that at the end of your story would say it took 2 years instead of 5 years. I am just over a year on prednisone & almost all my hair is gone aside from the additional 35 lbs.I gained in just one year yet eat very little. No one can recognize me since I was thin my entire life so, although I warn them they are in total shock when they see me & it hurts to see the looks on their faces since we have been friends for 45 years. I don't hear anyone talk about the massive hair loss. Best wishes to you and wishing you a Merry Christmas & a Happy & Healthy New Year. Take care , Tina

    • jillian92038
      jillian92038 Tinapoly1

      Posted

      Hi Tina,

      I have lost hair too. Initially it wasn't too bad but since my recent flair in the summer and subsequent upping of pred I have been malting non- stop. My hair is so thin now at the top and sides that it is difficult to manage- not that it was any great shakes to start with!

      I know how disheartening it is especially with the added weight gain but just try and concentrate on the fact that you are hopefully not in so much pain now and it will, by all accounts improve as you lower the meds.

      Hope you have a happy Christmas and more positive New Year.

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