Fibromyalgia — Scope | Disability forum
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Fibromyalgia

debbiedo49
debbiedo49 Community member Posts: 2,904 Disability Gamechanger
I would like to know can people recover from fibromyalgia please? Is it a lifelong condition? What's people's views and experiences please?
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Comments

  • markyboy
    markyboy Community member Posts: 367 Pioneering
    The simple answer is NO it is a lifelong condition but you can have good days and bad and is not helped by stress 
  • ColleenMarsh
    ColleenMarsh Community member Posts: 3 Listener
    Hi I have Fibroyalgia and have had more flares than I have ever had since last year. In my experience I have been told that this is a lifelong condition and to live with it. I am on medication which on really bad days don't work. Everyone is different and each of us this condition affects us in different ways. xxx
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Hi folks I've had chronic pain for years triggered by trauma and was diagnosed with fibromyalgia last year. I'm asking because I think it's a life long condition but I'm not sure so I'm asking the community.  If you go online there is always something or someone proclaiming to know the miracle cure. But on here it's real people with real experiences. Also if anyone here has advice on managing it better for them then I would like to know how please. I've come to terms with it, but at 50 years old I'm not giving up yet lol. It's amazing to read about how treatments vary widely.
  • marmalade
    marmalade Community member Posts: 69 Pioneering
    Hi sadly it is a lifelong condition but there things that help.  Losing weight if you need to.  (Still working on that one) do whatever exercise you can.  Conserve your energy and plan your day.  Meds have different effects for everyone so thats a journey you may have to take yourself.  Yin yoga and pilates are very good so is swimming but again need to manage this.  
    I use a power wheelchair if i am gonna be out and about for any length of time this helps conserve energy and minimise my pain.  I always make sure i stretch and move around when i come out of it.
    Every fay is different and then you have the flare ups on top of that.  It really is a juggli g act but understanding yourself and how it impacts you will definitley help.  Get a referall to an OT they can be super helpful as can physiotherapist.  Let us know how you get on  
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Thanks I've been to physio who said they are not trained for fibromyalgia but can help with symptoms that can be labelled like sciatica, stiff neck eyptc. In my case I felt it was a box ticking exercise. I had 4 sessions including assessment for sciatica. I felt like a fraud for saying fibromyalgia and them not recognising it. How can they treat you for symptoms without this knowledge? It did help my xciatica though. Next I  have podiatry for symptoms of plantar fascistic which I've had before years sago but not to this extreme. It may be something else. I go next week. As usual self referral and onths of waiting on NHS. I have really bad neck and shoulder stiffness which is probably arthritis and I probably should get physio for again a self referral.. That's all my g p does for me meds or self referral to physio etc. 
  • ncps
    ncps Community member Posts: 30 Courageous
    I have fun to and hold meetings for people affected by Chronic pain all over Northamptonshire, check out the website or th page www.ncpsuk.com

    Lou

    Northants chronic pain support

    www.ncpsuk.com


  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    I’ve just got my heel bursitis diagnosed by podiatry today. Looking it up it can be linked to arthritis which I think I have undiagnosed. They suggested ibuprofen gel for 2 weeks and give it 8 weeks to recover. I’ve had it for a year so I know it’s not going to recover just like that.  Blooming useless nhs podiatry. I said what else can bd done like ultrasound or injections. They said no injections can cause damage anc ultrasound doesn’t work. That’s funny cause it worked years ago when I had it and I got ultrasound. Looked it up and the web site recommends ultrasound and steroid injections as treatment. 
    I don’t know if others with fibro get these issues?

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  • marmalade
    marmalade Community member Posts: 69 Pioneering
    Hi @debbiedo49
    I don't have bursitis but i do get a lot of pain in my feet.  It got so bad I insisted on a x-ray cos i was convinced I was walking on broken bones.  When your feet hurt everything hurts.
    I would bypass podiatrist and soeak with your GO and get your ultrasound and injections that way.  Maybe the podiatrist is not up to date or their website isn't but definitely worth a second opinion.  Let us know how you get on.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Well tbh I went to my gp first who told me to self refer to physio and podiatry and when I asked about the injections he said no he doesn't do them as they hit n miss and that other doctors do them by choice or not. Physio did same same thing they don't use ultrasound for it anymore. I suspect it's cutbacks as I didn't see any of the specialist beds or equipment I saw before. I think they are told to say it doesn't work. Physio and podiatry were barely interested in my issues.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Just heard fibro has been classed as a lifelong disability today at parliament 
  • marmalade
    marmalade Community member Posts: 69 Pioneering
    Oh wow that's awesome so glad to hear that.  Hopefully this will prevent the fight to get recognised thanks for posting @debbiedo49
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Welcome to the community @gjb80, and thanks for sharing your experiences with us!
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    gjb80 said:
    I have fibro too, along with a bunch of other neurological disorders. It sucks. And even though it is a life long condition you can have periods of remission that can last for years. I have found that the right meds, alongside managing my diet better, sticking to a strict sleep routine and forcing myself to exercise regularly really helps. I still have regular flares, fatigue and plenty of joint pain but it's not as bad as it can be if I neglect my routine.
    What kind of things would you recommend? 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Hi how’s everyone doing?
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I'm very well thank you! It was nice to have some extra relaxing over the bank holiday. How are you doing @debbiedo49?
    Scope

  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    I’m okay thanks we didn’t have a bank holiday in Scotland x

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