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Chronic fatigue syndrome

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  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    Sounds horrendous for you, oh didn't know that about gabapentin, knew they were for seizures, I have cfs as well as fibro and studies have shown it's. a neuro condition, are they trying to kill me off? It's starting to feel like it. I wish my condition fitted neatly into one of dwps little boxes. On another thread someone asked the question what advice would you give your younger self! My answer was don't get ill under a Tory Government! I really do feel that they would be much happier if I curled up and died, as long as I could afford to pay for my own funeral. Sad isn't it when the measure of a civilised society is how we treat our vulnerable citizens. So called first world country!
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    Sarah i couldnt agree with you more....i have heard a few people say this and i have felt it strongly too. Theresa May dancing is proffessional standard when compaired to her empathy or and understanding of how to treat the vunerable in society ...i dont want to make my feelings about her too personal but its so disgusting and icant wait until she is    gone hopefully to be replaced by any other party but conservative! I have studied the nervous system at degree level. When sent early in my diagnosis to see a neurologist i said to him i knew my nervous system was the problem due to my symptoms but he said no which i still believe is totally wrong. i was diagnosed by a rhumatologist which i find questionable as we may have issues with muscles but i feel that the root of that is nureological. I feel this is why we have all the other symptoms affecting sleep ( the overactivation of the nervous system) and the problem with temperature regulation etc etc.all i feel connected to a flight or fight response in the brain that probably occured in childhood.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Gabapentin can be used for fibro
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    yes it is off label ......dont you think its strange that nobody knows what fibro is but gabapentin is deemed to help? didnt help my pain and made me like a zombie with dementia symptoms
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    @vickyanne what was your degree, I did mine in sociology and history in the end but originally I was going to do nursing but due to kids and ex it wasn't possible. Biology was my best subject in school and I did study the major systems of the body in my access to nursing course. I don't think doctors like it when you tell them that you have a good working knowledge of the subject, they tend to get a bit defensive like you're intruding on their exclusive area of expertise. Lol
  • [Deleted User]
    [Deleted User] Posts: 118 Listener
    I did Acupuncture degree and yes they are taken by supprise when you can fit the pieces together. Must say though i found the NHS pain clinic a joke and refused their "help" after 2 consultations in 5 months 
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    Feel like saying either try it my way or give me a damn good reason why not!
  • littleruthie123
    littleruthie123 Community member Posts: 511 Pioneering
    Treatment for fybro is poor .I take a cocktail of drugs and still suffer .I've also had pain injections ketamine etc.dident work .I would try anything!!.they say pacing  but when your barely functioning anyway it's tough.i crash every week mid week regardless .weekends are spent feeling awful and being able too do anything .I also have fatigue .I pray something happens treatment wise for us all .as it's a horrible condition. It's life-changing x

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