Chronic fatigue syndrome — Scope | Disability forum
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Chronic fatigue syndrome

lizo61
lizo61 Member Posts: 1 Listener
edited June 2018 in Cerebral palsy
I have lived with this for 14 year's i was just wondering if any body else suffers with a lot of chronic pain all over their body as well as the sleeping and lack of any energy. And how they get through it 
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Comments

  • markyboy
    markyboy Member Posts: 367 Pioneering
    Hi i know exactly how you feel i had a viral infection 7 years ago which left me with chronic fatigue to the point of cleaning my teeth was like doing a marathon and had to rest after 
    over the years i have learned not to expel to much energy at one time otherwise its pay back time the next day so its all about pacing yourself
    you can get loads of info on the ME Association website if you are under 65 you can claim personal independence pay and with chronic fatigue you have a high chance of being successful as i claim standard daily living and enhanced mobility as walking up to 20 metres is as far as i can go before i have to go in a
    wheelchair 
    There is a section on the website called chronic fatigue and PIP but the site has loads of help and support when you are at your worst days
    Good luck and my heart goes out to you as it is a awful condition which a lot of people do not understand especially when it is all you can do is get out of bed have a shower and that's your energy gone for the day gone.
  • Matilda
    Matilda Member Posts: 2,590 Disability Gamechanger
    I have rheumatoid arthritis which causes fatigue.  I sleep by not going to bed until midnight - 1 am.  To give me more energy I take multivitamins with iron, B 12 tabs, and testogel ( when it's available).
  • markyboy
    markyboy Member Posts: 367 Pioneering
    Chronic fatigue syndrome is a neurological condition and no amount of vitamins or supplements have any affect on your energy levels
  • littleruthie123
    littleruthie123 Member Posts: 495 Pioneering
    Hi I have chronic fatigue as a result of breast cancer treatment. It's very hard too cope with .it have alot of pain ;which too a degree you can push through .chronic fatigue knocks me off my feet it's like hitting a wall can't function think anything !.pacing dosent help no matter how hard I've tried  it's very frustrating too say the least  and effects you life massively 
  • littleruthie123
    littleruthie123 Member Posts: 495 Pioneering
    @Liz69.?sorry haven't got a huge amount apart from learning too say no too things .that I do believe people don't really understand it very well.as we no it's nothing like tiredness!.trying too pace is an ongoing challenge .listening too your body as much as we can .and making adjustments from before we had this awful illness..still learning as I go along .any useful ideas welcome ?
  • minnie1960
    minnie1960 Member Posts: 3 Listener
    I have fibromyalgia and find when I do have energy I rush round and try to do everything which puts me back in bed,paceing yourself is best no amount of nutrition and vitamins helps except magnesium that helps a little
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    I have fibromyalgia. I do some activity then crash and I have chronic pain every day. I don’t know what chronic fatigue syndrome is. On here you get to learn all the names for conditions and what the effects are which is an education. I also have m h conditions which exhaust me. It’s so hard to get diagnosed with anything as my g p doesn’t like to refer on and this has gone on for years. Is chronic fatigue similar to the fatigue u get with fibro? I must look it up. 
  • sarah50
    sarah50 Member Posts: 119 Pioneering
    As far as I understand it the word fibromyalgia just means pain all over and since the medical profession has no clue as to cause and no treatments it's treated a bit like an umbrella diagnosis, something they assign to you when they can't find anything else. There is argument regarding chronic fatigue syndrome/ ME about whether these are the Same or different conditions but again the medical profession does not really know the cause and the treatment offered is symptom based. I've been diagnosed with CFS and Fibromyalgia. I think the fibro as a symptom of the CFS, but it doesn't really matter how you define it.
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger

    I am a bit offended by the way you suggest that Fibro is something they assign to you when they can’t find anything else but clearly you must know what Fibro is if you have it. It’s like no other type of pain I’ve ever experienced and it’s the way the brain perceived the pain we experience. So here’s what is on NHS uk for anyone in doubt. Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

    As well as widespread pain, people with fibromyalgia may also have:

    • increased sensitivity to pain 
    • fatigue (extreme tiredness) 
    • muscle stiffness 
    • difficulty sleeping 
    • problems with mental processes (known as "fibro-fog") – such as problems with memory and concentration 
    • headaches
    • irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating 

    If you think you have fibromyalgia, visit your GP. Treatment is available to ease some of its symptoms, although they're unlikely to disappear completely.

    Read more about the symptoms of fibromyalgia

    I may be a touch over sensitive about this, pardon the pun .


  • sarah50
    sarah50 Member Posts: 119 Pioneering
    Sorry debbido49 I did not mean to be offensive in anyway and I'm not for 1 minute saying it's not real and is not hell what I was saying is there is a total lack of understanding and knowledge within the medical profession. My experience in trying to find out what is wrong with me has been very bad. At times I have been treated like a malingering hypochondriac. It took 3 years for me to find a GP that would refer me to a specialist that diagnosed me. As there is not a single test they can do and say yes that's what you have, I feel that the word fibromyalgia is a doctory nothing word that does not in anyway cover our condition. Sorry again if I offended you. X
  • TinaCross
    TinaCross Member Posts: 3 Listener
    I have Fibro myalgia, Ankylospondylosis, severe nerve damage and a rare skin and muscle disease.  I am severe pain 24/7, I have aching leg syndrome or what it's called, I am tired all day long, if I don't have to get out of bed, I won't, I can sleep all day and night, buy yet I sleep all day then be awake on and off all night, I can not win no matter what I do. I can walk holding on to railings around my home, but in pain, from the bedroom to the toilet, this should take around 2-3 seconds, me it takes about 10 seconds because my legs, back and feet are all giving me different pains but all at the same time.   This I find very difficult to cope with.    I have to wake my husband in the night to come round the bed and help turn me over, as I cannot move because of the pains, this upsets me deeply and makes alsorts of things start my Depression and Bipolar off, Asthma and COPD, starts as my breathing gets rapid.  I also have Arthritis in my hands and wrists which I wear supports, same with my knees, and ankle support but I have had to improve. 
  • TinaCross
    TinaCross Member Posts: 3 Listener
    So sorry for my long version x
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Welcome to the community @TinaCross, and thank you for sharing this with us.
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Fibromyalgia is not a nothing or doctors made up word it’s a condition that can be diagnosed by symptoms. When it takes years to get a diagnosis I get offended when people say it’s not a medical condition which is really just ignorance. I’m not saying you are ignorant by saying it I’m saying people can be ignorant about it. Same as they can be about other conditions which may be incidental illnesses. In the past conditions like ME were described as fake or unreal and now we know different. All health professionals need to catch up with fibromyalgia it’s a disservice not to. The pain from fibro is uniquely different and anyone who has it can tell you that. It’s also being found out to impact or cause other conditions around the body. So it’s not just one type of pain or one symptom but can be more than one or many. 
  • sarah50
    sarah50 Member Posts: 119 Pioneering
    @debbiedo49 I think we are really saying the same thing in different ways, I know its a real thing, heaven knows i know its real, so please stop getting offended and read what I actually wrote. i was saying the problem in the UK is that you have to visit a GP they are the gatekeepers to the rest of the health service. Unfortunately there are still many many GPs especially older ones who still doubt its reality. There are many who fob us of with inappropriate advice and drugs instead of referring to someone with any actual knowledge or experience.
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    It’s a very sensitive topic and I apologise for being over sensitive 
  • markyboy
    markyboy Member Posts: 367 Pioneering
    Chronic Fatigue , Fibromyalgia, and irritable bowel syndrome are all classed as  Hyposensitivity syndrome conditions and usually go hand in hand 
    This is what they are classed as in the medical profession
  • markyboy
    markyboy Member Posts: 367 Pioneering
    Sorry  Hypersensitivity
  • sarah50
    sarah50 Member Posts: 119 Pioneering
    Just for clarification when I said fibromyalgia was just a doctory word I was not saying that our condition is not real. The word fibromyalgia is a combination of three words. 1. Fibro - a Latin word meaning fibrous tissues 2. My from myo a Greek word meaning muscles. 3. Algia from Greek word meaning pain. What I'm getting at here is that Fibromyalgia is not the name of a condition as much as a word for just two of the symptoms of a much more complicated condition. It does not cover the massive fatigue, the cognitive impairment the pain we feel in bones the vascular pain the nerve pain the joint pain, the inability of the body to cope with temperature variations. Heat, light, or noise sensitivities. For example if I sprained my wrist I would have a localised fibromyalgia eg pain in the fibrous tissue and muscle.

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