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has PMR returned?

Posted , 8 users are following.

Gone_Girl
Gone_Girl

arrow Over the weekend I think I was feeling the symptoms of the fibromyalgia. THe fatigue kicked in and today I shamefully woke, from a deep sleep of disturbingly detailed odd dreams, at 3pm.

And boom.... the polymyalgic saddle-soreness is creeping back and a very befuddled head and hungry body.

I have a blood test tomorrow morning and GP on Thursday.

Does anybody else have fibromyalgia and poly?

Is it possible?  eek  idea

1 like, 10 replies

10 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey Gone_Girl

    Posted

    Yes, although it doesn't seem fair, it is possible to suffer from both PMR and Fibromyalgia.

    PMR pain can "creep back" if you reduce the steroid dose too soon or by too large an amount.  It can also come back if you have been overdoing things rather than having lots of rest to allow the steroids to do their job of getting the inflammation under control and keeping it there.

    Have you had a blood test to see the state of your hormones - any deficiency can result in pain.  You should also request a Vit D blood test - again deficiency can lead to pain in similar parts of the body to PMR, and can be corrected with a course of pure Vitamin D3.

    • chrissie80897
      chrissie80897 MrsO-UK_Surrey

      Posted

      thanks for that, I received scripts for the VitD3 and calcium tabs to take with the steroids but i didn't take them , i wonder if that is what it is as i only had a very little vit D in my body anyway x

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey chrissie80897

      Posted

      Chrissie, what do you mean by "very little vit D" - do you know the actual figure?  The normal range is considered to be between 75 and 150/200, depending on your local Health authority guidelines.

      You should definitely be taking the calcium + Vit D pills when on steroids, always leaving a few hours between Pred and calcium so that the latter doesn't interfere with the absorption of the former.

      However, depending on how low your Vitamin D levels are, the Vit D in the calcium pill won't be sufficient to restore levels to normal if you are very deficient - you will need a 3-month course of high dose pure Vit D3 (Colecalciferol) in the first instance. 

  • grandmaDylan
    grandmaDylan Gone_Girl

    Posted

    I was diagnosed with fibro in 2002 and pmr in march this year. My pain had increased so my my gp increased my pred from 15mg to 20mg 11 days ago. Four days after the increase the pain round my ribs and back was horrendous, I couldn't bend and it was difficult to take a deep breath or cough it took several days for this severe pain to go. I don't know if it was the fibro or the pmr...I don't suppose it matters I just wish it would all go away. Deb
  • chrissie80897
    chrissie80897 Gone_Girl

    Posted

    omg ! I am suffering like mad just now with that saddle problem and can't get up and steady my feet and lega on the ground , walking with wide gate just now to relieve pain, have Poly and fibro and osteoarthritis, not sure whats happening with what , 56 years old and feel like an 80 year old walking, I am going to demand an MRI tomorrow as Ifeel my spine isn't right, the pain is all down the side of my tigh , hips , back , saddle and calves pulling tight, had this bad spout for 4 months now every day, it's driving me mad ! x
    • chrissie80897
      chrissie80897

      Posted

      Forgot to say, the Prednisolone steroid is what I am reducing on just now over months, I was only on 10mg and the pain and stiffness went in 2 days , then it gradually was no good and the more i am wearing off it the worse i am getting but it was only short lived and I think it is no good in th elong run x

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey chrissie80897

      Posted

      Chrissie, as you experienced such a good response to your 10mg starting dose of Pred, then that more or less confirms PMR.  

      The main reason for returning pain and stiffness is that you either didn't remain on the starting dose for long enough to maintain control over the inflammation, or you reduced by too large an amount in the first instance.

      The steroids are not curing the disease - sadly nothing does at the moment - they are just damping down the inflammation that causes the pain until PMR goes into remission, and that can take anything from 2 years upwards.

      If you remember at which dose the pain and stiffness started resurfacing, then you need to return to a dose just above that and remain there for a good month at least.

  • Flutterbie57
    Flutterbie57 Gone_Girl

    Posted

    I am a bit late answering, but sadly yes you can have both Fibro and PMR. I have had Fibro for 18 years, and PMR for only a few months. I am on holiday in Hawaii at the moment for a rest - bad move - PMR seems to be under control - I have a few Pred side effects, but the Fibro has flared up in the heat/humidity. At the moment I havn't got the energy to find a palm tree to sleep under. 
    • Gone_Girl
      Gone_Girl Flutterbie57

      Posted

      I wish I was in Hawaii.....it must be warm and sunny?!

      I am in very tepid and rainy Edinburgh Scotland. It does not feel like summer at all.

      Sorry to hear you are having a flare up of fibro in the heatrolleyes.....but your PMR has subsided!!!!  I am the other way round.....fibro ok but  PMR is creeping back in arms legs and bum.

      Am a bit cheesed off as was wanting to come off the pred....I hate the thought of being on steroids..."prefer" fibro to poly any day!

      Are you American? Do you live in there? I am English but have been living in Scotland for 16 years... maybe I should live somewhere warmer  eek

       

    • Flutterbie57
      Flutterbie57 Gone_Girl

      Posted

      Hawaii is very hot and humid at the mo. I am from NZ and  we are having a very cold wet winter so decided to go somewhere warm. I should have thought it through a little more and gone somewhere pleasantly warm and dry tho. Don't be tempted to go from Edinburgh to somewhere too hot - maybe the Pred makes it worse as well.

      I do like your desciption 'disturbingly detailed odd dreams'. I always have a physically bad day if I awake with bizarre dreams

      Like you I hate being on steroids, but my Dr kept stressing that blindness could result, so I take them. It is like being stuck between the devil and the deepblue sea - I don't feel good on them, and I feel intense pain (to remind me) when I lower them. 

      It was a bit of a mixed blessing when I first started Pred - I had 3 marvellous, magnificent, incredible days with no Fibro pain(1st time in 18 years). I couldn't believe how much pain you can get used too. And my head was clear (unbelievable feeling). When it didn't last, I went into a slump and then found this forum to hep me. Eileen had said that I might have gone into Euphoria and my Dr eventually said the same. I didn't feel euphoric, just no pain.confused

      I am slowly accepting that I have to live a much slower (lazier) lifestyle, and I do know a dry, medium climate suits my Fibro best. Where could we all immigrate to ?

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