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Fibromyalgia

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Comments

  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Ah okay! That makes sense @debbiedo49, sorry about that one! Hope you have a lovely day today. :)
    Scope

  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    How are my fibro friends?
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
  • marmalade
    marmalade Community member Posts: 69 Pioneering
    Fighting tooth and nail with DWP but it's getting weary now 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @debbiedo49, how are you doing today? It looks like you had a hard day yesterday.
    Scope

  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Bit better thanks how are you @Chloe_Scope?
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    marmalade said:
    Fighting tooth and nail with DWP but it's getting weary now 
    What stage are you at? 
  • marmalade
    marmalade Community member Posts: 69 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.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 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? 
  • marmalade
    marmalade Community member Posts: 69 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
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I'm good thank you @debbiedo49! How are you today? :smile:

    Scope

  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Better thanks and back at work. Tired legs ? 
  • g1gop
    g1gop Community member Posts: 17 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_Scope
    Adrian_Scope Posts: 10,821 Scope online 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?
    Community Manager
    Scope
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 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
  • mrbuttons
    mrbuttons Community member Posts: 221 Pioneering
    edited November 2019
    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: 231 Pioneering
    The user and all related content has been deleted.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @g1gop, how are you getting on at the moment?
    Scope

  • g1gop
    g1gop Community member Posts: 17 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

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