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just diagnosed

Posted , 5 users are following.

HOTpicks99
HOTpicks99

Today finally got diagnosed after all this time fibromyglia prescribed pregabalin its going to be a trial then upping dosessad

0 likes, 9 replies

9 Replies

  • Maggers
    Maggers HOTpicks99

    Posted

    hi Hotpicks

    Welcome to the club nobody particularly wants to join!   I remember when I was diagnosed I did not feel any different in that I was still the same person the day before the diagnosis and the day after. The label was helpful for work though.  Do hope that the pregabalin works for you.

    Chin up - onwards and upwards.

    • HOTpicks99
      HOTpicks99 Maggers

      Posted

      Thanks for your reply im not good at mo with this adding on what i have alreadysad feel like crap
  • Maggers
    Maggers HOTpicks99

    Posted

    It's hard I know. I have other issues too. Just try not to expect too much of yourself. It's a learning curve and trial and error as to what you can do when.  You will have to learn to say "no" and be selfish which I think I have found the hardest particularly when there are so many demands.  I have to use the spoon theory with my family to remind them that I cannot do everything for everyone when they wish as I used to do.  It is easier said than done I know.  I have to have sofa surfing days with a hot water bottle and a duvet occasionally but I do try and move around as much as I can otherwise I just seize completely.  Have you tried hot baths with essential oils and some of the other suggestions mentioned in other posts.
    • HOTpicks99
      HOTpicks99 Maggers

      Posted

      I have very hot baths with radox the flakes i was told is only a temporary relief im soo tired and i cant say no its in my nature
    • bluesman
      bluesman HOTpicks99

      Posted

      Epsom Salts (Magnesium sulphate) is best for baths. Also look at magnesium supplements and google 'magnesium deficiency fibromyagia'
  • Bee70
    Bee70 HOTpicks99

    Posted

    Hi HOTpicks

    I have been in pains over 20 years and was only diagnosed with Fibro Aug 2014. To be quite truthful to me it was a relief to finally have a name put against my suffering after all these years. Fibromyalgia is a name to the pains we feel and doesn't change the fact the pains we have daily will disappear.

     I feel now that I know I can learn to understand and organise my life that suits me best.  Saying NO to the nearest and dearest is one of the hardest things as they all rely on ME.... but I have done it and I am really proud of myself to have taken the first step to think about ME for a change. With Fibro one needs to take time for oneself and respect what our body is telling us and learn to slow down and take rest periods in between our daily tasks.

     We are NOT robots but are real people and if we can accept this then I believe there is a light at the end of the tunnel.

    Meds work for some and not for others it's all trial and error and a learning curve for all.

    Positive minds and staying stress free is our road to recovery.  Cognitive Behaviour Therapy was the way forward to me.  I took this therapy after I found out about my Fibro and it has opened my eyes into my way of thinking.

    Ask your GP to refer you for CBT, these are six weekly sessions for an hour with a one to one therapist. 

    Gentle hugs and stay positive. wink x

    • HOTpicks99
      HOTpicks99 Bee70

      Posted

      Thank you for your lovely replay its the being in pain all the time is getting me down i want to be where theres no pain i will ask my doctor i have to go back to see him soon the problem is its only the gps that want to help off now cos the new tabs r making me tiredx
  • Maley_Bear
    Maley_Bear HOTpicks99

    Posted

    Hi

    Pregabalin was the first drug I tried. It did help with some of my pain but I had two BIG problems with it. First was if I was late taking it I would start to get very bad headaches the ones that you can't stand light or sound, even if it was Just an hour late. Second was I put about 4 stones on which even now that I'm on different medication I am still finding hard to get rid of. I'm not saying that you will be the same, side effects effect us all differently. I was on top dose for two years and I had just had enough of my tablets making me worse , making me feel like they were in control of me and not helping. Again I'm not saying it will happen to you but just watch out for signs of it. 

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