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I have recently been told I fibromyalgia

Posted , 3 users are following.

kirsty08752
kirsty08752

I am new to all this but would like advice please feel like am cracking up. I have been sick for nearly a yr now was recently diagnosed with interstitial-cystitis now they think I may also have fibromyalgia. I am in a lot pain with my knees neck also my elbows an most frequently my hips. The pain can be so intense sometimes I can't get out of bed I very rarely leave the house only for hospital appointments an I have also gained weight which is not like me as I have always been very active xx

0 likes, 6 replies

6 Replies

  • Bee70
    Bee70 kirsty08752

    Posted

    Hi Kirsty

    Welcome to this forum. You have come to the right place for support from other sufferers.  The people of this forum are so welcoming and comforting to have and we all share our Fibro experiences on here.

    Sorry to hear you are in so much pain.  Firstly you need to be stress free,  I know easier said than done.  Stress and Fibro don't go well together. Staying focus and positive also helps.

    i don't really take meds, personal choice, but at the moment trying herbal remedies. It's a slow process.  I have been suffering for over 20 yrs and only diagnosed with Fibro in Aug 2014.

    I have had CBT (Cognitive Behaviour Therapy) which I found helpful in the mindfulness of the thought process. It doesn't take the pain away, but helps with the daily thought process and how to be positive.  Taking one day at a time and pacing your day is the way forward.  It's a difficult task to follow if one is used to a busy lifestyle, but I'm learning to pace my day and getting their finally.

    Hope others on this forum will give you further advice and support.

    Take care and gentle hugs to you. wink xx

    • kirsty08752
      kirsty08752 Bee70

      Posted

      Thank you for kind words and help I am willing to try anything at the moment as nothing I use helps with the pain xx
  • kaz_40
    kaz_40 kirsty08752

    Posted

    morning Kirsty08752 welcome to the forum we are a friendly bunch, we do all we can to help support each other. My weight is up down like a yo yo since having fibro. I am unable to take anything for pain, as Im allergic to opoids.. so I just use wheat bags and hot water bottles. Your gp can prescribe you something for the pain this can be trial error to find out what works best for you. your gp can also refer you to a pain clinic for cbt and my area does free acupuncture for 12 weeks and also so many weeks hydrotherapy in my local hospital. Everything with fibro is trial error its finding things ways that work for you. as we are all different and fibro is different in the severity of which it affects us all. you could see if your area has a support group. get aids to help you in your daily life. your gp can refer you to be assesed at home by your local ocupational health team to see what aids you need.Paceing our selves is important stress worry makes fibro worse.Take care gentle hug
    • kirsty08752
      kirsty08752 kaz_40

      Posted

      Thank you so much for your kind words an help. It's been a emotional ride the last year. My doctors arnt very useful at the minute I have been advised to change my doctors which I am looking at doing. I actually mentioned to my husband husband about trying acupuncture so may look into that thank you once again kirsty x
    • kaz_40
      kaz_40 kirsty08752

      Posted

      your welcome If the drs your under arnt helpful, I would definitly change drs and fine 1 that is. as their help support is invaluable to us. take care gentle hugs x
  • bronwyn97278
    bronwyn97278 kirsty08752

    Posted

    Hi Kirsty;  I know that treatments and what is available are different for those living in different countries (and this I learned via this forum);   in the Great world of Auss, I have found that the best help that I have received is primarily from my Rhuematologist, as it is under their umbrella to diagnose and find the Appropriate treatment/s for any Musculoskeletal conditions, and Fibro is one of these conditions, as it affects our joints and muscles (any Fibrous tissue)......I do take medications as well as using Massage and Physio....and the two medications that help my pain are Gabapentin (Neurontin) and Amitriptylline (whiich comes under many Generic names).....others find Lyrica helps (but this did nothing for me, and Does cause weight gain), and the other med that some Rhuemys advocate is Cymbalta, but these made  me more Emotional........I really do feel that Regular Physio/massages do help, as they keep my muscles less tense, which is one of the causitive factors to our Stiffness etc......................and Yes, as to the Isolation, this becomes very much an issue, as for most of us, we were very outgoing, hardworking, full people, but over time, we find other things to keep us Sane (like this forum)............good luck and keep "blogging" when you feel the need...............wink​these I love, as they express how we are feeling..............Bron
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