If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Chronic fatigue syndrome

lizo61lizo61 Posts: 1Member Listener
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 

Replies

  • markyboymarkyboy Posts: 363Member 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.
  • MatildaMatilda Posts: 2,614Member 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).
  • markyboymarkyboy Posts: 363Member Pioneering
    Chronic fatigue syndrome is a neurological condition and no amount of vitamins or supplements have any affect on your energy levels
  • littleruthie123littleruthie123 Posts: 460Member 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 
  • littleruthie123littleruthie123 Posts: 460Member 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 😁
  • minnie1960minnie1960 Posts: 3Member 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
  • debbiedo49debbiedo49 Posts: 2,842Member 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. 


    I am a fibrowarrior!
  • sarah50sarah50 Posts: 119Member 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.
  • debbiedo49debbiedo49 Posts: 2,842Member 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 .




    I am a fibrowarrior!
  • sarah50sarah50 Posts: 119Member 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
  • TinaCrossTinaCross Posts: 3Member 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. 
  • TinaCrossTinaCross Posts: 3Member Listener
    So sorry for my long version x
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Welcome to the community @TinaCross, and thank you for sharing this with us.
  • debbiedo49debbiedo49 Posts: 2,842Member 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. 


    I am a fibrowarrior!
  • sarah50sarah50 Posts: 119Member 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.
  • debbiedo49debbiedo49 Posts: 2,842Member Disability Gamechanger
    True dat


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,842Member Disability Gamechanger
    It’s a very sensitive topic and I apologise for being over sensitive 


    I am a fibrowarrior!
  • markyboymarkyboy Posts: 363Member 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
  • markyboymarkyboy Posts: 363Member Pioneering
    Sorry  Hypersensitivity
  • sarah50sarah50 Posts: 119Member 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.
  • debbiedo49debbiedo49 Posts: 2,842Member Disability Gamechanger
    @markyboy never heard of it, hypersensitivity syndrome? You learn something new every day. 


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,842Member Disability Gamechanger
    @sarah50 so what are you suggesting? Do I not say I have fibromyalgia? My doctor says I have fibromyalgia. Are you saying it's wrong to say that? Are you saying we should all be calling it chronic fatigue syndrome? To me chronic fatigue is a symptom. My doctor says chronic fatigue is a symptom. Why is there so much confusion? Anyone know? It's like going around in circles with no right answer isn't It?


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,842Member Disability Gamechanger
    edited October 2018

    Hypersensitivity and Chronic Regional Pain Syndromes: Sympathetic Reflex Dystrophy 

    http://www.acupunctureintegrated.com/articles/hypersensitivity

    @markyboy is this what you mean?



    I am a fibrowarrior!
  • markyboymarkyboy Posts: 363Member Pioneering
    When i went to see a specialist to get my chronic fatigue diagnosed this is what he said in his report that i was suffering from Chronic fatigue and other Hypersensitivity syndromes including Fibromyalgia and irritable bowel and stated that in majority of patients if you suffer from one of these conditions you are likely to suffer from others
  • debbiedo49debbiedo49 Posts: 2,842Member Disability Gamechanger
    Thanks


    I am a fibrowarrior!
  • [Deleted User][Deleted User] Posts: 0 Listener
    I hear you debbiedo49 ......Fibromyalgia is a relentless nightmare ...i hear your frustration as we experience so much misunderstanding which adds to our struggles...sometimes i feel nobody "gets it" and i have experienced profound comments that hurt me to the core of my being....some comments 1) GP said you dont look ill so why you asking for a sick note! daughter said there is nothing wrong with you stop saying there is...its a made up illness and doesnt exist...you need to lose weight and get yourself out of your rut! ( we havnt spoke for 3 years) ive been told by others to have a early night lol..to exercise when i struggle to look after myself due to severe fatigue. i could go on ...its very isolating
  • markyboymarkyboy Posts: 363Member Pioneering
    Chronic fatigue and Fibromyalgia are now recognised conditions i have recently took out travel insurance and these conditions are on the medical declare conditions list and in most cases increase your premium
  • sarah50sarah50 Posts: 119Member Pioneering
    @debbido49 what I'm saying is that the word Fibromyalgia is meaningless the condition is far more devastating and calling it muscle pain is insulting the argument can be equally applied to CFS and ME. Perhaps part of the reason sufferers are often not taken seriously when we try to convince so called medical experts just how much this condition affects every part of our daily lives is because they take one quick look in our notes at our history and it says Fibromyalgia (muscle pain) to a GP with no experience or a nurse at a face to face consultation for PIP it probably suggests to them that it's not really as disabling as it is and doesn't fit their descriptors. This means we have to battle for the help we need.
  • sarah50sarah50 Posts: 119Member Pioneering
    @markboy travel insurance is another thing you have to declare everything to insurance companies even corns and bunions as they can use any undeclared health issue as a reason to refuse a claim even if your claim was totally unrelated to something which you previously went to the doctors for. Afriend of mine took out what she thought was a really comprehensive policy and diligently included what she thought was all her complaints. Her claim was refused because she had been to doctors years before suffering lots of headaches she had forgotten about it as the headaches were caused by an eyesight problem and had been solved with different glasses
  • sarah50sarah50 Posts: 119Member Pioneering
    @vickyanne hi 🙋 Really sorry to hear your story just so you understand. This is not a debate about whether it is real or not. It is definitely real and it's a hell all of its own. The debate here is why it is even now not seen as a big problem. I believe it is not taken seriously because the medical name used for the condition does not reflect the devastation it causes. I hope your having a low pain day. X
  • [Deleted User][Deleted User] Posts: 0 Listener
     Hi Sarah its okay i know its not a debate as to whether or not it exists i was empathising with a fellow fibro sufferer. Thankyou for your best wishes of low pain ..i am coping with the pain today as this is my 6th day of high dose diazepam as given to me at A&E Saturday as my neck and back are in spasms. Also Naproxen as well as codiene and paracetamol ..off to bed now as i cant keep my eyes open. 
  • debbiedo49debbiedo49 Posts: 2,842Member Disability Gamechanger
    I have breakthrough pain daily despite the meds. I find it very hard to get my g p to understand that there is more pain and it's disabling. They know so little about it and the meds are trial and error. I did get my hopes up when I got to go to pain clinic at the practise, but the person is a pharmacist and suggested decreasing my pain meds over one month due to side effects to see if it made any difference. At the time I agreed. When I got to 3 weeks I gave up as I wasn't coping especially not sleeping. By then I was thinking what am I doing listening to a pharmacist? Is this a cost cutting exercise? Anyway I couldn't make my appointment and so far haven't rescheduled. I feel let down that I haven't had specialist support as my g p says fibromyalgia can now be diagnosed and treated at g p practise. Apparently I don't need to go to a specialist. I think this is a cost cutting exercise. What do other people do about getting the right treatments and what do folks do about breakthrough pain? I'm only on gabapentin for fibro.


    I am a fibrowarrior!
  • sarah50sarah50 Posts: 119Member Pioneering
    Hi @debbiedo49 so sorry you are finding pain control so difficult. I'm not sure what pain meds you are on but I'm guessing they are opioid based. The problem with this type of painkiller is that they only really help short term. Taking opiates longterm can cause side effects like hyperalgisia and osteoporosis both of which add significantly to the pain we feel, this might be why the pain clinic recommended a reduction in dose, as for not seeing a specialist im not sure what speciality could help, I've never found a GP to refer me to one and it does feel like we are getting care on the cheap
  • [Deleted User][Deleted User] Posts: 0 Listener
    well ive had my sleep and just woke up my "nap was from 12.30 to 8.30 ovbiously something very wrong here ...I guess i should be glad that at least i have been knocked out from the pain for a while as the diazepam has me like a zombie!! the spasms are back ive only had breakfast and now i need to take all my meds again! I am also very worried that i am being turned into a pharmaceutical junkie.....surely there has got to be a better answer 
  • sarah50sarah50 Posts: 119Member Pioneering
    @vickyanne so sorry you're having such a tough time. Diazepam are brilliant for spasms but they are really strong so I'm not surprised they make you feel like a zombie, I'm glad you managed a few hours sleep at least that helps us feel that we can cope a bit better. I like you really worry about becoming a junkie on top of everything else and at the moment I'm drug free as I can't tolerate the Amitryptaline and gabapentin that the doctor offers and he won't prescribe opiates or sleeping tablets etc but I'm really struggling to cope with the pain. I use heat pads hot water bottles. Epsom salt baths. Meditation, mindfulness etc. A friend of mine swears by cbd oil but it is expensive as she buys a quality organic one from Holland and Barret, its about 80pounds a bottle which lasts about a month. I think its a question of getting on the internet and doing some research then trial and error for what helps you as we are all so different. I hope things improve for you soon. Xx
  • [Deleted User][Deleted User] Posts: 0 Listener
    Sarah thankyou for your kind words and understanding. i have used cbd oil and it helped at the time but then didnt seem to have the same effect ...i am hoping to be prescribed the medicinal cannabis in Novembber as i have done my research and feel it has a lot of promise as i also have Complex ptsd. 
  • sarah50sarah50 Posts: 119Member Pioneering
    @vickyanne not promoting or advising but I have turned to the real thing in the past and it really helps both pain and quality of sleep x
  • [Deleted User][Deleted User] Posts: 0 Listener
    To be honest Sarah this what i will do if not prescribed it as my Gp has told me that zopiclone and diazepam lead to dementia which i can totally see as alcohol can so why not. However the only support that we get is these types of meds...its due to the fact that the big pharma are running the nhs......xx
  • sarah50sarah50 Posts: 119Member Pioneering
    @vickyanne I agree so many people believe that big pharma are the only ones with answers. It even proved it in my decision letter for PIP. In the justification for zero points on every descriptor it said not taking meds so its reasonable to assume you can manage unaided. Then compounded by the statement that The GP keeps offering me sleeping and pain meds and I keep refusing. I went to the GP to check if they had told DWP this. The GP printed the form they sent them to prove to me they didn't say it. I have never been offered sleeping pills or opiate painkillers. I have tried amitryptaline and gabapentin and several different antidepressants but I don't tolerate them. This is why I'm drug free and it made me so angry that the healthcare pro at the face to face did not write down any of the pain control methods that I use as an alternative. The system is so biased it's cruel!
  • [Deleted User][Deleted User] Posts: 0 Listener
    soooo agree with you and even though i take zopiclone and diazepam and codeine with paracetamol i too was told i dont take enough painkillers even though like you say gabapentin on full dose did not stop my pain and the side effects had me like a zombie and the amatriptaline put me in A&E With night terrors and anxiety levels so high my gp couldnt get a reliable BP reading as it was so erratic! the psychiatrist was not happy that i was put on that antideppresant with Complex ptsd!  trouble is the doctors are struggling too as DWP and the big pharma have been pulling their strings too. If the specialists have not worked out what my two conditions are  how can pen pushing DWP insist on treatment protocol anyway......? Gabapentin by the way damages vital neurons in the brain and are used off label for pain disorders as they are for seizures!!! I also have liver disease which makes me very wary of meds. if it wasnt for the money made by Big Pharma i would swear they want rid of us! 
  • sarah50sarah50 Posts: 119Member 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: 0 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.
  • debbiedo49debbiedo49 Posts: 2,842Member Disability Gamechanger
    I agree


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,842Member Disability Gamechanger
    Gabapentin can be used for fibro


    I am a fibrowarrior!
  • [Deleted User][Deleted User] Posts: 0 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
  • sarah50sarah50 Posts: 119Member 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: 0 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 
  • sarah50sarah50 Posts: 119Member Pioneering
    Feel like saying either try it my way or give me a damn good reason why not!
  • littleruthie123littleruthie123 Posts: 460Member 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
Sign in or join us to comment.