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Fibromyalgia

debbiedo49debbiedo49 Posts: 2,891Member 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?


I am a fibrowarrior!

Replies

  • markyboymarkyboy Posts: 374Member 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 
  • ColleenMarshColleenMarsh Posts: 3Member 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
  • debbiedo49debbiedo49 Posts: 2,891Member 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.


    I am a fibrowarrior!
  • marmalademarmalade Posts: 66Member 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  
  • debbiedo49debbiedo49 Posts: 2,891Member 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. 


    I am a fibrowarrior!
  • MKMaleMKMale Posts: 24Member Courageous
    Hello @debbiedo49
    I have had Our Fun Filled Friend Fibromyalgia since 1999/2000 and I hope it is curable and not a life long condition ... However I been on C.B.T Course, a Chronic Pain Management Course as well as Chronic Fatigue Management Course and kucky enough to have an exceptional G.P and Senior Consultant who headed up a team of excellence regarding Fibromyalgia and C.F.S/M.E so far I have yet to meet someone, and I don't remember anyone else who has. Everyone/Everything I have believe it is lifelong. It had completely destroyed my life and left me with nothing except ever present pain....
    Magic Beans and Giant Beanstalk spring to mind when I hear/read about a cure..... But who knows there is always hope and dreams .. Maybe, just maybe one day...
    Hope today finds you a little better than yesterday.
    Blessings Be
    X
  • ncpsncps Posts: 30Member 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


  • debbiedo49debbiedo49 Posts: 2,891Member 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?

    About



    I am a fibrowarrior!
  • marmalademarmalade Posts: 66Member 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.
  • debbiedo49debbiedo49 Posts: 2,891Member 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.


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    Just heard fibro has been classed as a lifelong disability today at parliament 


    I am a fibrowarrior!
  • marmalademarmalade Posts: 66Member Pioneering
    Oh wow that's awesome so glad to hear that.  Hopefully this will prevent the fight to get recognised thanks for posting @debbiedo49
  • gjb80gjb80 Posts: 1Member Listener
    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.
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Welcome to the community @gjb80, and thanks for sharing your experiences with us!
  • debbiedo49debbiedo49 Posts: 2,891Member 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? 


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    Hi how’s everyone doing?


    I am a fibrowarrior!
  • Chloe_ScopeChloe_Scope Posts: 5,360Administrator Scope community team
    I'm very well thank you! It was nice to have some extra relaxing over the bank holiday. How are you doing @debbiedo49?
    Chloe
    Online Community Officer
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    I’m okay thanks we didn’t have a bank holiday in Scotland x


    I am a fibrowarrior!
  • Chloe_ScopeChloe_Scope Posts: 5,360Administrator Scope community team
    Ah okay! That makes sense @debbiedo49, sorry about that one! Hope you have a lovely day today. :)
    Chloe
    Online Community Officer
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    How are my fibro friends?


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    😩


    I am a fibrowarrior!
  • marmalademarmalade Posts: 66Member Pioneering
    Fighting tooth and nail with DWP but it's getting weary now 
  • Chloe_ScopeChloe_Scope Posts: 5,360Administrator Scope community team
    Hi @debbiedo49, how are you doing today? It looks like you had a hard day yesterday.
    Chloe
    Online Community Officer
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    Bit better thanks how are you @Chloe_Scope?


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    marmalade said:
    Fighting tooth and nail with DWP but it's getting weary now 
    What stage are you at? 


    I am a fibrowarrior!
  • marmalademarmalade Posts: 66Member Pioneering
    I went to tribunal but they adjourned my hearing because they said I did not have enough evidence.  But the judge stopped short of calling me a liar and said that I had credibility issues and that fibromyalgia was based on credibility.  So I have made a formal complaint.  And now gathering up all the information I need for round two.  But given the way I was treated I do not feel like putting myself through it again.
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    @marmalade something like that happened to me with sea at tribunal. I felt that the"doctor" on the panel was a dinosaur and at that time I was focusing more on my mental health issues with my chronic pain ( undiagnosed fibro). My cab advisor did not contribute. I felt unfairly dismissed and devastated at the refusal. At the time I had been on the sea merry-go-round too long and gave up. Had I the support I deserved and needed at the time I would have put in a complaint but my cab advisor person wrongly advised me I could go no further. With pip and coming on this site I feel much better informed and have some idea how things can go so I try to switch off from it and expect nothing. I'm getting help from wro but they have stopped attending with folks as well now. So I'm trying to focus on what I know rather than my fear of the process. What I think is you have to believe in yourself and you have to prove to them you are entitled to the benefit. It's like they sense your doubt and go in when you are vulnerable. That's my feeling anyway. I'm sorry you are going through this but if you feel you are being treated unfairly then you should keep going. Have you tried getting your mp involved? 


    I am a fibrowarrior!
  • marmalademarmalade Posts: 66Member Pioneering
    I have now engaged a representative so that should help. The biggest thing for me was getting access to my power hair, which I purchased myself because that's my life line that's what keeps this condition from consuming my life.  I have now purchased a hoist for my car and changed my car to an automatic.  But it's a disgrace I have had to do all.of this for myself.  The attitudes and views on this condition is archaic and arrogant.  It's like banging your head off a brick wall.  But at least I can hold my head up
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    Good for you ! 
    @marmalade


    I am a fibrowarrior!
  • Chloe_ScopeChloe_Scope Posts: 5,360Administrator Scope community team
    I'm good thank you @debbiedo49! How are you today? :smile:

    Chloe
    Online Community Officer
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    Better thanks and back at work. Tired legs 😝 


    I am a fibrowarrior!
  • g1gopg1gop Posts: 16Member Connected
    Hi amongst other things , I have fibro. My Dr's are great and very understanding but I would like some advice please.
    Day to day I have learnt ways to adapt to the pain and other problems. I cannot do much or work but I bumble along at a low level and have a life.
    what I need advice with are days/times when I have a flair up.

    My fibro is classed as 'extreme'. My pain is in many levels. First is arthritis like pain in joints and muscles (cross between arthritis and starting real flue). Then I have the random very intense pains that happen throughout the day at any place on my body and at any time. That one can catch me out. Usually they last only up to about an hour (things like feeling my ankle is broken/some one has stabbed me/ I am on fire (literally)/having a heart attack/etc These after five years of I have come to 'deal (as much as you ever can) with..
    The pain that floors me is when my whole body just 'explodes'  There is no way to describe the intense pain or 'shock' I feel.
    Often the only way I can get through these periods is to somehow get to sleep and hope that it resets when I wake. Obviously getting to sleep when you feel like your whole body is on fire and your skin is dripping off you or that some one is  ripping your body to bits is the problem. I have various painkillers up to Tapentadol. Yet when a flair happens I have maxed out (and often gone well past safe levels) to try to cope. Fortunately this state does not happen often(hey the rest is bad enough! lol).
    So Any ideas/suggestions on being able to get it under control?
    Yes an impossible question but open to suggestions.
    Please dont do the 'try going for a walk' etc. Physical activity is a non starter (for reasons I wont bother you with).
    Listening to music/etc does not work (remember this is off the scale  very intense pain).
    Tried all the usual meds for fibro and non worked.
    As I say For everyday stuff I have an 'uneasy truce' with the pain and fog etc.
    No its the 'all out war' times I am sinking and need help.
    alan
  • Adrian_ScopeAdrian_Scope Posts: 3,888Administrator Scope community team
    Hi @g1gop. I'm really sorry to read this. It sounds horrendous. As we're not medical professionals here, we won't be able to advise you, but perhaps @ClaireSaul might be able to make a suggestion?
    Senior Online Community Officer
    Scope
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    Hi @g1gop you could be talking about me with your comments. I have fibro too and it’s hard. 
    Yesterday I had f2f pip assessment which involves me travelling into town by taxi and should have got taxi home. However, feeling brave with my son I decided to take train home at 5 pm from a busy station and didn’t get a seat. So the journey takes 15-20 minutes and by that time my lower body has seized up in an awkward position and I can barely move my joints. As it’s been years since I’ve been on a train it was really stupid of me and I was taken aback by how much fibro has affected me in this way. 
    The other factor was it’s a lot of money for taxis and I would have to wait for the money back and we decided it would be nicer to treat ourselves to some takeout food. Again, the station is the nearest place to us to get out takeout food from a specific place and I wanted to treat us after the horrendous ordeal of the assessment.  
    You have to take your fun where you find it lol. 
    So im not sure if talking to others helps you or not but that’s why there are threads like this on here. 
    I’m happy to accept messages as well if you wish to talk privately. 
    Take care
    Debbie


    I am a fibrowarrior!
  • mrbuttonsmrbuttons Posts: 100Member Pioneering
    edited November 2
    I was diagnosed almost 20 yrs ago and have had symptoms every day since then. some days are less bad but all days are painful in some way. Painkillers don't really help, they just take the edge of the worst off it.
    the best thing I have found is to not try to battle through the frequent flare-ups but to rest, rest, rest. trying to ignore the symptoms will only prolong the flare-up as will having too much stress in your life. stress in life is inevitable but its how we respond to it that makes the difference. I tend to withdraw from the world and stay in bed. I know everyone doesn't have that luxury but its the only thing that works for me.
    I have come to accept it as a part of my life. sometimes I can predict when I will have a flare-up: after periods of insomnia, days of exertion, stress, poor diet, being overweight, anxiety, other health conditions, depression. I have found that acidic foods such as tomatoes/citrus/ alcohol and lots of dairy products worsen my symptoms. apparently cranberries and cherries are effective anti-inflammatory foods and are said to help. warm baths and electric blankets are great for relaxing the muscles also any medication that promotes sleep by relaxing muscles. there is one thing I used when younger which I can't use now, it has been legalised for some MS  patients, but unfairly, not fibromyalgia. I won't name it because it's still illegal, but I'm sure you can guess.

    this is just my experience I hope this info is helpful to others :)
  • [Deleted User][Deleted User] Posts: 0 Pioneering
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  • Chloe_ScopeChloe_Scope Posts: 5,360Administrator Scope community team
    Hi @g1gop, how are you getting on at the moment?
    Chloe
    Online Community Officer
  • g1gopg1gop Posts: 16Member Connected
    Rough this week. Thanks for asking. The change in weather affects me a lot. Picking up today though. Had a lot of sleep apart from one day when I woke at 2AM and couldn't get back to sleep.
    Alan
  • Chloe_ScopeChloe_Scope Posts: 5,360Administrator Scope community team
    Sorry to hear this @g1gop, I can relate to the weather affecting pain! I'm glad you are picking up today and are able to get in some more rest. :)
    Chloe
    Online Community Officer
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