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I have cerebral palsy and fibromyalgia

JadeBJadeB Posts: 62Member Talkative
edited November 2018 in Cerebral palsy
hi all,
i have mild ataxic cerebral palsy. I can walk but have reduced power in my limbs. Have balance issues and also walk with a gait. However I have always worked and have an amazing job working with other young disabled people. However over the past couple of years I found myself becoming very fatigued and aching all over. This was normal from time to time but eventually my bad days became every day and the chronic ache never went away. My bladder issues worsened and my legs got weaker. The fatigue knocks me clean out. I manage to work part time but not much else. After blood tests, more physio, hydro and a rhymotology appt. I have been diagnosed with fibromyalgia. (Chronic pain syndrome.) has anyone else with cp also developed fibromyalgia. Doctors and physio think it may be a secondary condition due to having cp. 

Replies

  • Richard_ScopeRichard_Scope Posts: 1,223Member, Administrator Scope community team
    edited November 2018
    Hi @JadeB ;
    It looks as though you are coping with a lot at the moment. As you probably know that as we age people with CP experience a certain amount of physiological burnout. This is thought to be because of the strain we place on our backs and limbs when moving.
    I do not have fibromyalgia and I am unaware of it being considered a secondary condition to CP in the same way that arthritis sometimes is. I know that a member of the community @littlemissinnocent has experienced something similar in terms of pain and fatigue. 

    Scope
    Specialist Information Officer - Cerebral Palsy
  • littlemissinnocentlittlemissinnocent Posts: 12Member Whisperer
    edited November 2018
    Hi @JadeB, I am in no way an expert, but I am happy to talk, or try and help where I can. Personally I was not aware of fibromyalgia being linked to CP. But, I have been more achy, and had more pain as I have got older, and do find I have periods of being really tired. I have arthritis as well, which is, I believe, a known secondary condition. If I can be of help, feel free to contact me.
  • JadeBJadeB Posts: 62Member Talkative
    @littlemissinnocent sorry for the late reply I hope you are well. I have recently told my boss about the diagnosis and had to be signed of work for a week just before Xmas due to exhaustion. I can definitely say the way people are about ‘insivible illness’ has surprised me. My boss has been fine but some of the people I work with are far less understanding. And seem to adopt the ‘suck it up attitude.’ I remind them that I have a physical Disability and a chronic pain and still work hard x
  • littlemissinnocentlittlemissinnocent Posts: 12Member Whisperer
    Hi @JadeB. It sounds like you are having a bit of a hard time at the moment. You can only do your best, and only you can fully understand what you are dealing with. I’m always happy to talk/ listen if it helps, but all I will say is try not to let the attitudes of others get to you, although I know that can be hard. Keep doing as you are, as it sounds like you are doing the best you can. No one can ask any more than that.
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