1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

There is light at the end of the tunnell!!!

Posted , 7 users are following.

nannypat
nannypat

Hi everyone..its been ages since I posted, but I have popped in from time to time to catch up.

Six years ago today my whole body completely siezed up. I had no idea what was wrong with me,but thankfully my doctor did..I found out later that he had just diagnosed another lady with PMR and knew the symptoms right away. Since then I've been a roller coaster healthwise..I've been diagnosed with osteoporosis and I've broken both wrists..the right about 5 years ago and the left last September..I've also been diagnosed with Coeliac disaese and a Hiatus hernia...but on the bright side..I've been told that I dont have IBS..I dont have Pernicious Anemia( both were all part of coeliac disease) and my iron levels have gone from very low to normal.

I hav'nt taken any Pred since christmas 2012 ..it hasnt been easy, and sometimes I feel quite achy but I wont go back on the Pred again unless I absolutly have to. Hopefully I never will.( fingers crossed) I just want to say thank you to all you ladies and gents out there for all your support and comments..I've read most of the comments made to others with questions and I've taken heart at all the advice thats been given when I was feeling down. Thank You.

5 likes, 9 replies

9 Replies

  • EileenH
    EileenH nannypat

    Posted

    Brilliant Nannypat! Just what everyone likes to hear!

    I'm not coeliac but have an allergy to something in modern wheat so eat a wheat-free diet - which for the purposes of eating out most places (and especially the UK) means looking for gluten-free. I think my diet has improved a lot as a result because I haven't yet met gluten and wheat-free bread that's worth it and bought cake is disgusting and I can't be bothered to bake my own!! OTOH, coeliac friends reckon they didn't have a weight problem until they started eating gluten-free food so I suppose it's swings and roundabouts.

    All the very best for the future.

    • nannypat
      nannypat EileenH

      Posted

      smilelol youre right EileenH..my weight has gone up since I started this diet...but I think its because most of the G/F foods are full of sugar ( to disguise the taste) Like you I think that the gluten/wheat /grain free breads and cakes in the shops are to be polite about it "not very nice". I was never a cook but I've learned that if I dont give it a go,I'll go hungry!!! 

      I thank God every day that I'm getting better and mostly painfree..a touch of arthritis in my now healed wrists..but I can put up with that..and so long as I dont fall over ( my balance has never been great) I hopefully wont break any more bones!! Pred has a lot to answer for ..loss of calcium and vitamin D. Dexa scans are so important to check for osteoporosis.

      I just want to thank you all (especially you and MrsO) for all your encouragement..you were the first ones to contact me when I found this forum..it means a lot to me.

      Pat.

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey nannypat

      Posted

      Nannypat, my balance was all over the place for a very long time, probably due to spending several months in bed undiagnosed. I found an excellent Tai Chi class which gradually really helped to restore it to almost normal, and then did a course of Nordic walking.  Such walking with poles is wonderful for balance and good weight-bearing for our bones.  The teacher told me that a member of one of her classes had been diagnosed with osteoporosis but after a period of Nordic walking a Dexa scan showed that her bones had returned to normal.  Perhaps you've got one or other of the above classes in your local area - if so, it may be worth giving them a try.
    • nannypat
      nannypat MrsO-UK_Surrey

      Posted

      Thanks for the advice..I must look up what classes are in my area..I was walking every day up until I broke my wrist last September..I got out of the habit then..it isnt easy to have a good workout when youre in plaster up to your armpit!!! I managed to break both bones and had two plates,screws,bells,whistles..the whole shebang!!  but if youre going to do it..do it properly!!! I've gotten lazy..another reason I've put on weight. 
    • MrsO-UK_Surrey
      MrsO-UK_Surrey nannypat

      Posted

      Probably not "lazy", Nannypat, but more a case of losing a bit of confidence after the falls.  Take care.
  • elaine_19679
    elaine_19679 nannypat

    Posted

    How nice to hear from someone who is now doing so well. 

    None of us get off Scott free and have our different problems but as someone who is still in the first year of this condition it's great to know as everyone tells me, it gets better.

    this has come at a time when I'm tearing my hair out with various problems so thank you nanny pat and may you continue to well for a long time to come.

    elaine

  • GM70
    GM70 nannypat

    Posted

    Thank you nanny pat for your posting. It gives people like me great encouragement. I am just at the beginning with my journey with PMR. Already had one setback because My GP lowered my Prednisolone too much too quickly but I had some good news on Friday last when I visited my GP. I took him a printout of the Bristol study for GPs ( thanks to everyone who posted the information, especially Eileen) He was very interested and he agrees that this is what I should follow so I am on my journey now on six weeks at 15mg. Fingers crossed. I think nannypat's post reminds us that we must all stay positive when battling this very strange disease.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey nannypat

    Posted

    How lovely to hear from you again, Nannypat, with the wonderful news that you are off Pred and in remission.  You were very young being diagnosed and you now have lots of lovely years ahead to enjoy your life to the full.  Keep well, and lots of good luck wishes for the future.razz

    MrsO

  • cat_lady_66
    cat_lady_66 nannypat

    Posted

    Congratulations on find out what has really bee the. After over the years and for

     not taking Preds 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.