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Anyone have Fibromyalgia and Polymyalgia ?

Posted , 3 users are following.

Flutterbie57
Flutterbie57

How are you coping with the Steroid treatment ?

1 like, 16 replies

16 Replies

  • kaz_40
    kaz_40 Flutterbie57

    Posted

    Hi flutterbie  fibromyalgia ms me and polymyalgia have basically the same or simillar conditions. I have all four but Im not on any steroids as my gp doesnt think I would benefit from them.  
    • Flutterbie57
      Flutterbie57 kaz_40

      Posted

      Wow - I thought I was being greedy, having 3 auto immune problems - I have Oral Lichen Planus as well, but you win with 4. Prednisone helped me within 24 hours with my Poly, but now I am having other new weird and not so wonderful problems Don't know what to do for the best. How do you cope ?
  • kaz_40
    kaz_40 Flutterbie57

    Posted

    Im not able to take meds as Ive had very bad reactions to everything Ive taken. So I use a hot waterbottle and Ibuprophen not that, that helps alot to be honest with you. Pin wise I just grit my teeth, and focus on other things I love designing. mixing colours fabrics diferent items different looks to a rooms. keeping your mind occupied with other distractions helps keep your mind off fibro it doesnt always work when your in pain. when Im in pain I just grit my teeth and cope the best I can. But whats helped me the most is being on this forum. the ladies are so supportive helpful with advice and you dont feel so alone and isolated like I did before. so being on here helps me no end take care gentle hugs. we are all in this togeather and here for each othersmile  
    • Flowerlady
      Flowerlady kaz_40

      Posted

      Good words Kaz, we are all one big bunch of Fibro Palsrazz
    • Flutterbie57
      Flutterbie57 kaz_40

      Posted

      Gentle hugs and a big smile for you too Kaz. I have had the Fibro for 18 years now. In the beginning I wondered how I would live with it, but next minute you realize you have managed and adapted. Like you, I think distraction is the best thing, doing things you love. And your best friend is the heat bag/hottie bottle. I also have an Elaine Petrone Miracle Ball which I got on the internet (recommended by a friend). It is slightly bigger than a tennis ball, and softer, and can help relieve many sore points. I have recently found this site thru the Poly forum and I have got so much info/advice/help/support etc from fellow sufferers. Its wonderful.confused
    • kaz_40
      kaz_40 Flutterbie57

      Posted

      Hi flutterbie finding this forum was an absolute god send. when I came across it by chance, I was at a really low ebb and felt that I couldnt take no more, and didnt want to go on with life. but finding this forum and talking to people who are going through the same as you. and understand how your feeling. as been a really big help, as the people that only fully understand us is the people that have fibro. take care gentle hugssmile
  • Flowerlady
    Flowerlady Flutterbie57

    Posted

    I were diagnosed 4 years ago now with our friend Fibro, I have recently been diagnosed with ME too. They are very similar. I just take Oramorph, it does take the edge off. I try not to sit around too much as I stiffen up, movement is good for us. Have a good day, if you can.cheesygrin
  • dee2418
    dee2418 Flutterbie57

    Posted

    Hi Flutterbie, yes I have them both and now also GCA so on a huge wack of steroids....60mg daily....and feeling absolutely drained. I've been on that dose for 3 weeks now  but hoping to reduce tomorrow once blood tests are back. I*'ve been on prednisolone coming up to a year and every time I get down to 10mg I flare up and my blood results go through the roof. 

    I'm on a bit of a downer right now, normally I play the cards I'm dealt but right now I feel like I've been landed with the joker in the pack! On the upside despite the steroids I've managed somehow to lose 9lbs last week.

    Take care

    • Flutterbie57
      Flutterbie57 dee2418

      Posted

      Recent onset of Poly and possible GCA has definitely complicated my old Fibro plan and I am not sure if I am overreacting, underreacting or just how good I should expect to feel on the Pred. First week was good - 3 excellent days in fact - then it has been all down hill again. I started on 20mg then was dropped to 15mg after 2 weeks - Poly people say too fast. Your experiences will no doubt be different on high doses. I guess we all just have to find our own happy medium. I am jealous of your recent upside tho - I am a classic case of Poly except for the weight loss - the only symptom I did not get and I was looking forward to that bit. confused
  • chickabee
    chickabee Flutterbie57

    Posted

    Hi, The GP thinks I have PMR and I think it's more like FM (guess it could be both).  Just about to start on steroids, so will keepo you posted.

    Blessings

    Chickabee

    • Flutterbie57
      Flutterbie57 chickabee

      Posted

       You will know soon enough. I had relief within 24 hours, but I have gone downhill - guess it is just a learning curve of how to balance the drugs. Good luck
  • pam_87693
    pam_87693 Flutterbie57

    Posted

    If any of you in this group are from the UK why don't you join British Sjogren's, Sjogrens presents with the sicca symptoms, the dry mouth, eyes and vagina, female 9/1 with fibromyalgia, ME or similar. It is a connective tissue disease a close cousin of Lupus, but not as devastating. It doesn't shorten your life but you feel tired and achy. It usually comes in the 30-50 age group, there is a though that it is due to waning hormones. There is no cure, but there is help. It is under rheumatology. BS is run by members of the BSSA the charity for Sjogren's. We a NOT doctors, we are expert patients, the group is for support and help. 
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