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Chronic Fatigue Syndrome & Fibromyalgia

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    Just thought I'd make a thread about these two illnesses as they're quite similar and I'm in the process of being diagnosed with one of them. I've been having all the symptoms for nearly a year and I've had endless tests carried out and my doctor has said my last few visits that she thinks I'm likely to have one of these two illnesses, but I can't be diagnosed yet until I've gone for one hospital last check up.

    I'm just wondering how many young people actually have one of these illnesses, as I know CFS is quite common.
    If you have one, what are your symptoms? Your coping strategies? Do you know other people your age with it? How much has it affected your life?

    I'm 20 and its affected my life massively and Ihaven't heard of many people my age having either one of them, so it'd be nice to talk to someone about it!!
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    They are considered as variants of the same spectrum of syndrome, but they present in slightly different ways.
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    (Original post by koistyjayne)
    I'm just wondering how many young people actually have one of these illnesses, as I know CFS is quite common.
    If you have one, what are your symptoms? Your coping strategies? Do you know other people your age with it? How much has it affected your life?

    I'm 20 and its affected my life massively and Ihaven't heard of many people my age having either one of them, so it'd be nice to talk to someone about it!!
    I have CFS and I'm 17 years old. I've had it since I was about 14, and was diagnosed when I was 15. When I was being diagnosed I had a blood test pretty much every fortnight for 6 months as I was passed around doctors and they all wanted to redo every test

    My symptoms currently are fatigue, muscle pain (mainly in my legs), brain fog and headaches, but at my lowest points I've had dizziness, nausea, migraines, IBS like symptoms, poor sleep and sensitivity to light and noise, as well as fatigue so bad I couldn't get out of bed and muscle pain that isn't eased by any painkillers.

    To cope, I usually take lots of pain killers I try to get as much sleep as I can, and I sleep when I'm tired during the day, as I find that after a nap I am able to concentrate a bit better and can get some things done. I deal with the brain fog by writing everything down, and explaining to people I can be a bit forgetful, especially when tired, so now my friends know I'm not ignoring them if I forget what they say, and I don't mean to stop mid sentence because my mind's gone blank. The main thing I'd say is don't try to fight the tiredness. The more you try to do when you feel unwell, the worse it'll be the next day. You just have to accept that you aren't well and rest when you need it.

    I don't know anyone my age that has CFS/fibro, but one of the teachers at my school has it, and I've found it useful to talk to him, as his isn't as bad as mine and he copes quite well, so he can give me tips for when I'm struggling. He also gave me the name of a specialist in the county next to mine, so I could go to my GP and ask to be referred to this doctor, as the NHS trust I'm in doesn't have any provision for people with CFS.

    The main ways it's affected my life is that it's meant my social life has been greatly reduced. I often amn't able to go out with friends as I get too tired, and they don't understand my CFS much so I've lost some friends as they think I'm just being lazy or making it up. I recently split from my boyfriend, who I had been with since before I was diagnosed, and when I asked him about it he said one reason we were breaking up was that he couldn't cope with my illness anymore, which was hard to hear. I hope that one day I'll find someone who'll be able to understand my illness and won't be affected by it, but I don't hold out much hope for that happening anytime soon. Another way it's affected me is at school. I used to be a straight A/A* student, but recently I can't keep up with the workload because of my health. I don't find the work hard, but I no longer have the energy to work as hard as I used to. This has meant I have had to drop a subject in school, and my grades have gone to B's and C's. My teachers understand, but I do feel disappointed in myself when I know I could do better. But I can't do anything about the fact that when I get home I'm in too much pain to concentrate, or I fall asleep instantly and will sleep for 14 or 16 hours straight. I just have to accept that this is how I have to live now and hopefully it'll get better with time.

    Also, I was told by the specialist I see that CFS and Fibromyalgia are pretty much the same illness, but most doctors diagnose CFS when fatigue is the main symptom, and fibro when pain is the main symptom. But that's just what I've been told, it might be different in different areas.

    Sorry this is a bit long, but I hope it was useful to read. PM me if you want to chat
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    (Original post by 03hope03)
    I have CFS and I'm 17 years old. I've had it since I was about 14, and was diagnosed when I was 15. When I was being diagnosed I had a blood test pretty much every fortnight for 6 months as I was passed around doctors and they all wanted to redo every test

    My symptoms currently are fatigue, muscle pain (mainly in my legs), brain fog and headaches, but at my lowest points I've had dizziness, nausea, migraines, IBS like symptoms, poor sleep and sensitivity to light and noise, as well as fatigue so bad I couldn't get out of bed and muscle pain that isn't eased by any painkillers.

    To cope, I usually take lots of pain killers I try to get as much sleep as I can, and I sleep when I'm tired during the day, as I find that after a nap I am able to concentrate a bit better and can get some things done. I deal with the brain fog by writing everything down, and explaining to people I can be a bit forgetful, especially when tired, so now my friends know I'm not ignoring them if I forget what they say, and I don't mean to stop mid sentence because my mind's gone blank. The main thing I'd say is don't try to fight the tiredness. The more you try to do when you feel unwell, the worse it'll be the next day. You just have to accept that you aren't well and rest when you need it.

    I don't know anyone my age that has CFS/fibro, but one of the teachers at my school has it, and I've found it useful to talk to him, as his isn't as bad as mine and he copes quite well, so he can give me tips for when I'm struggling. He also gave me the name of a specialist in the county next to mine, so I could go to my GP and ask to be referred to this doctor, as the NHS trust I'm in doesn't have any provision for people with CFS.

    The main ways it's affected my life is that it's meant my social life has been greatly reduced. I often amn't able to go out with friends as I get too tired, and they don't understand my CFS much so I've lost some friends as they think I'm just being lazy or making it up. I recently split from my boyfriend, who I had been with since before I was diagnosed, and when I asked him about it he said one reason we were breaking up was that he couldn't cope with my illness anymore, which was hard to hear. I hope that one day I'll find someone who'll be able to understand my illness and won't be affected by it, but I don't hold out much hope for that happening anytime soon. Another way it's affected me is at school. I used to be a straight A/A* student, but recently I can't keep up with the workload because of my health. I don't find the work hard, but I no longer have the energy to work as hard as I used to. This has meant I have had to drop a subject in school, and my grades have gone to B's and C's. My teachers understand, but I do feel disappointed in myself when I know I could do better. But I can't do anything about the fact that when I get home I'm in too much pain to concentrate, or I fall asleep instantly and will sleep for 14 or 16 hours straight. I just have to accept that this is how I have to live now and hopefully it'll get better with time.

    Also, I was told by the specialist I see that CFS and Fibromyalgia are pretty much the same illness, but most doctors diagnose CFS when fatigue is the main symptom, and fibro when pain is the main symptom. But that's just what I've been told, it might be different in different areas.

    Sorry this is a bit long, but I hope it was useful to read. PM me if you want to chat
    First off, thanks for replying and for giving me all that info! Your case sounds really similar to mine. I've had all the problems of being passed around to different doctors too and the countless blood tests, I've been waiting to go to the hospital for my last check up but the NHS keep cancelling and rescheduling my appointment!!! So I'm looking into private healthcare right now so I can get a diagnosis and learn to carry on with my life!!

    I take lots of painkillers too but they don't really help me with my muscle and joint pain but it surprisingly helps with some IBS problems I get. I have all the same symptoms as you really, but each take their turn in being the main one! The fatigue and pain is probably the worst, especially in my legs and my back (which is why my doctor isn't quite sure which one to diagnose me with because I couldn't really tell you which is the dominant problem!). I also get brain fog and forget what I'm saying mid-sentence, really bad headaches and migraines, nausea, some IBS symptoms, a constant sore throat and I can't control my body temperature- usually I'm either freezing or boiling!! One thing that does help me with the pains in my legs and back is a deep tissue massage. I get a full body one done every 3 weeks by a friend of mine so I don't have to pay and can have it at home, but if you find somewhere where you can get it done for a decent price I'd recommend it!!

    Apart from that I've improved a little over the last few months just by organising my sleep pattern and the other things I've mentioned above. I had to defer this year at uni (I'm meant to be in my 2nd year now) because towards the end of my first year I started getting ill and over the summer got progressively worse. But since the new year I feel I've been a lot better just from small changes like getting out of bed in the mornings and doing light activities, having a routine and avoiding getting into bed during the day. I used to stay in bed all day and could hardly walk but now I can do things like housework and get out of the house most days, but only for a short while. But I can accept now that some days I'm too ill to go out or do anything so I just rest.

    Sorry to hear about your boyfriend and your friends, I've had a lot of problems with my social life too since getting ill. Luckily my family and most of my friends understand I can't go out and see them all the time, so I'm lucky there. Unfortunately though some friends just don't bother even talking to me anymore because they don't think I'm really as unwell as I say I am and like you, they think I'm being lazy and making it up. But it doesn't really bother me anymore, it just shows that they're a crappy friend and my close friends are understanding, which is what's most important to me.
    I do really miss going out though. I was quite sociable before all this started and I loved going out clubbing, to the cinema, on days out etc and I hated the idea of staying indoors all day and not seeing my friends, but now some days all I want to do is stay on the sofa and watch tv, and the idea of going out to a club is like a nightmare for me now! I don't see my friends too often because most of them are still at uni, but I still talk to them a lot and see them when I can.
    I'm glad you can still go to school though, if I was your age and in school I definitely couldn't cope!! I can't wake up before 11am usually and if I do quite a lot one day, I'm completely exhausted the next!

    I think that's enough for now, this is a really long post!
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    "Just thought I'd make a thread about these two illnesses as they're quite similar and I'm in the process of being diagnosed with one of them."

    You'll find many many threads on this topic.
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    (Original post by Jamie)
    "Just thought I'd make a thread about these two illnesses as they're quite similar and I'm in the process of being diagnosed with one of them."

    You'll find many many threads on this topic.
    and the full range of opinions expressed. Including the 'magic bullet truthers', those who accept it's existence but recognise the somatic component a through to those who think it's made up
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    (Original post by Jamie)
    "Just thought I'd make a thread about these two illnesses as they're quite similar and I'm in the process of being diagnosed with one of them."

    You'll find many many threads on this topic.
    So....are you trying to say its a problem that I've made my own thread about my own experiences? I searched these two for a long time, I couldn't find a thread that talked about these two illnesses together.

    (Original post by zippyRN)
    and the full range of opinions expressed. Including the 'magic bullet truthers', those who accept it's existence but recognise the somatic component a through to those who think it's made up
    Same goes for this really...are you trying to say its bad that I made my own thread about the two so I can share my experiences? :confused:
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    (Original post by Jamie)
    Nope, I will no longer touch this topic with a barge pole.
    But there are tonnes of threads about these 'illnesses' on TSR
    PRSOM.
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    Jamie and mushi master have hit the nail on the head with views of many of the health professionals and student Health professionals on TSR,

    there is clear evidence for certain things that are both positive and negative, but given the berating insults and death threats from the 'magic bullet' mob towards those who suggest that
    a) there is a somatic component
    b) the 'magic bullet' mob can do more harm than good with some of their 'support'
    c) that 'psychiatric' treatment (e.g. CBT, and associated works ) has no place in in the treatment of these diseases, that there must be a magic cure once the causative agent is discovered.

    the cynics would suggest that ME/CFS has become the post millenial version of conditions that used to present as 'hysterical paralysis' etc , especially given the commonality in the demographic it 'strikes' just the patients are lesslikely to be found out in the way that hysterical paralysis patients were found out by putting them on SIUs and the the 'real' Paralysed patients grassing them up ...
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    Wow...who knew that just by posting a thread asking other CFS & Fibromyalgia suffers to share their stories would cause so much controversy!!

    I think the fact that Jamie just put 'illnesses' says it all really about how most people view the two illnesses :eek:
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    (Original post by koistyjayne)
    Wow...who knew that just by posting a thread asking other CFS & Fibromyalgia suffers to share their stories would cause so much controversy!!

    I think the fact that Jamie just put 'illnesses' says it all really about how most people view the two illnesses :eek:
    I know! This is why I tend to avoid posting too much about them If you wanna PM me then do, I'm happy to chat about our experiences and give any advice if you need it, or just be someone to talk to who understands
    #1

    I had similar symptoms (probably less severe than Hope) and was passed around GPs for about 6 months before eventually being diagnosed with post viral fatigue about 5 years ago (i'm 18 now). I then changed GP for a different reason and all of a sudden it was being called CFS. I'm not sure if this was due a lack of communication or because he felt that the fact the the symptoms lasted so longer meant it was worse than initially expected (i read somewhere that CFS is prolonged PVF or something).
    Luckily, i seemed to have got through the worst of it. I still have days every month or so when even getting out of bed is difficult and where everything hurts but on most other days I function normally.
    Obviously i don't feel great if i go out for 2 nights in a row or whatever but I seem to be able to push through it and I've kept my grades (got an offer from Cambridge, woop!). I also managed a 3 week expedition to Africa which washed me out completely but didn't kill me, which i'm quite proud of!
    I think, now that the worst of it is over, I manage my symptoms by prioritising and realising it's okay to miss out on some things. I don't really talk to my friends about it, I think they just think i'm complaining when i say i'm 'ill' but they've got used to me not coming to everything so they don't really ask questions. You both seem to push through much better than i did when my symptoms were bad and mine may not even be CFS seeing as how mine wasn't severe for a huge amount of time but i'm so confused about it all anyway.
    The most frustrating thing for me in terms of diagnosis was doctors who said it was just 'stress' (one tried to give me betablockers and acted as if i was just attention seeking) or depression (which is ridiculous because i believe i'm extremely upbeat and not many things get me down).
    My first GP said I was just overdoing it despite me hardly leaving bed at all for about a month. It just feels as if they think i'm trying to make excuses but it stopped me from getting the support i needed.
    Anyway, i realise mine isn't half as bad as yours but good luck and I hope things get better! Sorry for the essay
    (posted anon because it'd suck for my friends to find out after keeping it to myself for so long)
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    (Original post by koistyjayne)
    Wow...who knew that just by posting a thread asking other CFS & Fibromyalgia suffers to share their stories would cause so much controversy!!

    I think the fact that Jamie just put 'illnesses' says it all really about how most people view the two illnesses :eek:
    These conditions are very controversial..on TSR and in real life
    I've recently (last month) been diagnosed with CFS/M.E., but Ive been suffering since the age of of 14. I'm now 22.
    My main sympotms are fatigue, joint and muscle pain (all over, but most common in my legs for which I take medication) and brain fog. I've also recently been struggling with nausea and occasionally light sensitivity.

    Feel free to PM me if you want to know any more.
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    (Original post by 03hope03)
    I know! This is why I tend to avoid posting too much about them If you wanna PM me then do, I'm happy to chat about our experiences and give any advice if you need it, or just be someone to talk to who understands
    I'll surely message you sometime soon, seen as I'm not a little worried to share everything in case it gets thrown back in my face!!

    (Original post by Anonymous)
    I had similar symptoms (probably less severe than Hope) and was passed around GPs for about 6 months before eventually being diagnosed with post viral fatigue about 5 years ago (i'm 18 now). I then changed GP for a different reason and all of a sudden it was being called CFS. I'm not sure if this was due a lack of communication or because he felt that the fact the the symptoms lasted so longer meant it was worse than initially expected (i read somewhere that CFS is prolonged PVF or something).
    Luckily, i seemed to have got through the worst of it. I still have days every month or so when even getting out of bed is difficult and where everything hurts but on most other days I function normally.
    Obviously i don't feel great if i go out for 2 nights in a row or whatever but I seem to be able to push through it and I've kept my grades (got an offer from Cambridge, woop!). I also managed a 3 week expedition to Africa which washed me out completely but didn't kill me, which i'm quite proud of!
    I think, now that the worst of it is over, I manage my symptoms by prioritising and realising it's okay to miss out on some things. I don't really talk to my friends about it, I think they just think i'm complaining when i say i'm 'ill' but they've got used to me not coming to everything so they don't really ask questions. You both seem to push through much better than i did when my symptoms were bad and mine may not even be CFS seeing as how mine wasn't severe for a huge amount of time but i'm so confused about it all anyway.
    The most frustrating thing for me in terms of diagnosis was doctors who said it was just 'stress' (one tried to give me betablockers and acted as if i was just attention seeking) or depression (which is ridiculous because i believe i'm extremely upbeat and not many things get me down).
    My first GP said I was just overdoing it despite me hardly leaving bed at all for about a month. It just feels as if they think i'm trying to make excuses but it stopped me from getting the support i needed.
    Anyway, i realise mine isn't half as bad as yours but good luck and I hope things get better! Sorry for the essay
    (posted anon because it'd suck for my friends to find out after keeping it to myself for so long)
    First of all, I'm glad that you're doing much better now and can go to uni, I also couldn't imagine going on a 3 week expedition to Africa in my current state so well done!!

    My doctor has told me that while the cause of CFS isn't exactly known, it can sometimes start after a stressful event or after a virus, so that's maybe why the newer doctor decided to change your diagnosis?
    I understand your frustration with them saying its down to stress and depression because a few doctors told me the same thing after all my blood tests kept coming back normal. I was put on anti-depressants for 3 months just as a trial to see if they would make any difference to my physical health and to maybe find the root of the problem. They didn't work, so my doctor was happy for me to come off of them. I was willing to try them because I just wanted to feel better but I find that you know your own body and you know whether its just your mind playing tricks on you, and but when its that severe you know that its not all in your head!!

    I understand too why you wanted to post this anonymously. I almost did too because to be honest it can be embarrassing to admit all your problems over the internet (especially IBS related problems and when you feel sad!) but I wanted people to know my username so they could message me if they wanted to. So if you ever want to so you can share more, feel free
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    (Original post by fredscarecrow)
    These conditions are very controversial..on TSR and in real life
    I've recently (last month) been diagnosed with CFS/M.E., but Ive been suffering since the age of of 14. I'm now 22.
    My main sympotms are fatigue, joint and muscle pain (all over, but most common in my legs for which I take medication) and brain fog. I've also recently been struggling with nausea and occasionally light sensitivity.

    Feel free to PM me if you want to know any more.
    Yeah, its pretty frustrating right?!

    Its a shame you've only just been diagnosed, I'm getting frustrated and its been 11 months so I couldn't imagine only just finding out after all those years!
    You have the same symptoms as me too. I'm not sure if you read one of my posts above but I mentioned that I get a deep tissue massage every few weeks and that has really helped with my joint and muscle pain, particularly in my legs. I don't know if you've ever had one but I'd definitely recommend it!
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    I have recently been told I have CFS/ME, and I don't know which direction to look. I am exhausted all the time, headaches and insomnia along side it. I have been off work for weeks, and also had an operation unrelated which was a repair of some fault recovery done in July to remove my gallbladder. The possible trigger to my condition could of been the general anthestetic, but who knows. Doctors and the specialist have put me on the waiting game to get help with the team but that could take a while. Feel so tired all the time. I don't have a vast support network, that understands. Feel so fed up and angry that its happening to me, and that work don't get it either.
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    Just thought I'd bump this thread up because now I actually have my diagnosis, and I do have CFS/ME.

    I'm still struggling, but doing a lot better than I was. Right now I'm doing a really crappy exclusion diet to see if it makes any improvement to my health and it has a bit, but it's really difficult!!
    I still can't go out/do things for too long, usually no more than about 2 or 3 hours a day otherwise I'll be bedbound for a few days afterwards. Its a slow process but my doctor thinks I'm starting to make a small break through it, so I'm feeling a little hopeful right now
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    (Original post by CHAZAA123)
    I was diagnosed with M.E (not CFS like most people) just an idea but have you had a look on AYME? Full of lots of information about M.E and pacing, diet, medication, uni etc etc and yeah! just PM me if you want to talk?
    Generally the diagnosis given these days is M.E./C.F.S. in recognition that it's the same illness but that niether title is particularly accurate.

    Ive been having 1 on 1 meetings with an occupational therapist every two weeks with the Bath M.E./C.F.S. clinic. weve gone through relaxation and coping tevhniqies, some basic cbt lessons and worked out my baseline. im finding it very hard to put it into practice though. i still nap when im tired etc but i am slowly trying to be producrive with my rest time and try to rest rather than sleep.
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    I have had a lot of the symptoms of these conditions and other things for years (I'm 18) but doctors never do anything. Even if I didn't have CFS or the other potential issues I still find life as difficult as you all describe it. I've been diagnosed with depression but my symptoms don't really match the diagnosis 100%. They did a basic thyroid test as well as diabetes, anaemia and an FBC but to them that's the limit, even though thyroid tests have to be more thorough to be definite and it runs in my family (Mum, nan and great-nan have it, as well as others). For years I have been constantly tired, slow, drowsy with a foggy head, sore throat and often lose my train of thought and get mixed up with basic commands. I'm breathless walking up the stairs and don't feel like I'm taking in enough air even when doing nothing. I constantly feel nauseous and if I'm out (at the pub or out shopping) I don't last long before I lose my energy and feel sick and achy and my speech slurs. I rarely socialise as I find it emotionally draining and I completely messed up my education in college due to awful concentration and the fatigue, so have to start it from the beginning. I'm not saying I have CFS but my symptoms sound just as difficult as the ones for this condition so you would think doctors would either run more tests or do something else about it!

    Fair enough teenagers get hormonal and have bad days but consistent fatigue, drowsiness, slurred speech, excessive sweating and inability to hold out as long as other people in your age group is surely SOMETHING to look into. When I'm out everyone is so energetic and most of the time I'm sat down feeling not so good, to make an understatement...

    Sorry it's not strictly about CFS but nobody ever listens to me. And if people in this topic listen to each other regarding the same problems that I'm having I thought I'd get a kinder response than the other "you're just a hypochondriac" idiots here.
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    (Original post by Freak Out)
    I have had a lot of the symptoms of these conditions and other things for years (I'm 18) but doctors never do anything. Even if I didn't have CFS or the other potential issues I still find life as difficult as you all describe it. I've been diagnosed with depression but my symptoms don't really match the diagnosis 100%. They did a basic thyroid test as well as diabetes, anaemia and an FBC but to them that's the limit, even though thyroid tests have to be more thorough to be definite and it runs in my family (Mum, nan and great-nan have it, as well as others). For years I have been constantly tired, slow, drowsy with a foggy head, sore throat and often lose my train of thought and get mixed up with basic commands. I'm breathless walking up the stairs and don't feel like I'm taking in enough air even when doing nothing. I constantly feel nauseous and if I'm out (at the pub or out shopping) I don't last long before I lose my energy and feel sick and achy and my speech slurs. I rarely socialise as I find it emotionally draining and I completely messed up my education in college due to awful concentration and the fatigue, so have to start it from the beginning. I'm not saying I have CFS but my symptoms sound just as difficult as the ones for this condition so you would think doctors would either run more tests or do something else about it!

    Fair enough teenagers get hormonal and have bad days but consistent fatigue, drowsiness, slurred speech, excessive sweating and inability to hold out as long as other people in your age group is surely SOMETHING to look into. When I'm out everyone is so energetic and most of the time I'm sat down feeling not so good, to make an understatement...

    Sorry it's not strictly about CFS but nobody ever listens to me. And if people in this topic listen to each other regarding the same problems that I'm having I thought I'd get a kinder response than the other "you're just a hypochondriac" idiots here.
    That does sound like ME/CFS but I really wouldn't take my word for it as this is just my opinion!

    There are all sorts of reasons why your body could be going through all these problems though, but nothing can be said without further testing. It took a year for me to be diagnosed with CFS and I can't tell you how many tests I had to have! I must've been tested for over 20 things via blood tests, then I had an ultrasound, a endoscopy and an mri scan on top of that. So you can't really be diagnosed with chronic fatigue until absolutely everything else has been ruled out.

    I understand your frustration with depression because I was told for a while that that was the cause of all my problems, but I knew it wasn't and the doctors found that out eventually. But do remember that if you're having all of these symptoms and it's having an impact on your life then you could develop depression which could make your symptoms worse.
    If you really think you might have ME/CFS then you can ask your doctor if that might be it on your next visit. Even if they say no, you still have the right to ask to be tested for more things.

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