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Chronic fatigue syndrome diagnosis

Posted , 9 users are following.

nichola99319
nichola99319

i have been ill on and off now since I was 25 am now 37. I was always very active, but every few weeks I would get ill and felt run down. My GP fobbed me off, and I just put up with it. In the last 2 years it has got worse. I literally get ill every 2/3 weeks I feel fatigued, sore throat, headache, can get myalgia pains, spaced out, freezing, weak and shaky, sometimes feel sickly. Sleep does not help. I also have episode of crashing . This Saturday I woke up after doing yoga the day before and could not do anything, I was floored.

i have had every test under the sun, and I am currently under rheumatology as my bloods for immune system were low. I have chronic neck and hip pain. My recent blood for ebv were positive indicating some virus in the past.

i manage to work full time and I have 2 children, although I have been sent home on numerous occasions as I am not well. The doctors wonder if I have CFS.

i do struggle to concentrate and think clearly when am like this, I also have poor memory.

feeling fatigued can last anything from a days to weeks, especially if I have over exerted myself . If I go out for days out with kids, I am floored on way home and have to go bed. I can't drink alcohol nowadays too, and nights out resort in me having to leave early or go bed even when am feeling well them days.

the only thing is, when I am well I can do normal things, I have been great for 4 weeks recently and done yoga 2x week, walked dog for half an hour, gone horse riding once in the week. But then boom I wake up and am floored. This can happen every few weeks where am great for weeks, then fatigued for weeks

does anyone else have similar experiences

thanks for any advice.

2 likes, 50 replies

50 Replies

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  • artistmike
    artistmike nichola99319

    Posted

    Nichola you do seem to have the same typical symptoms that most of us who have being diagnosed with ME/CFS have. Firstly I would ask your doctor if you can be referred to an ME/CFS clinic if you have one in a hospital near you. You'll have more chance of a proper diagnosis and be given good advice on how to cope with it.

    You also, as others have said, are making the classic mistake of following the "Boom and Bust" cycle, which you really do need to address if you want to minimise the amount of time that you feel ill and ghastly. Going through that cycle will also hinder your recovery, so it's very important not to keep repeating it.

    Pacing has been mentioned and it's a bit of a knack to get used to . The best way for you to find out what level of exercise you can achieve constantly without being ill, is to immediately cut the amount of things that you are doing drastically for few weeks until you are sure that you are stable and only when you can maintain that level of activity without crashing, can you try adding in other activities, one at a time and in small amounts.  Never just go back to full activity when you're feeling better or you'll just be straight back to square one.

    If you crash you know that you are attempting to do more than you can cope with, so just reduce it and try to find that base level that you know won't make you ill and allows you your maximum quality of life... ME/CFS is a way of life and finding your optimum activity level is vital.

    With ME/CFS, don't think you can fight it or ignore it and get better that way, you can't, it will always win... Improvement or recovery is possible but the above is the way to achieve that and in the meantime, get as many tests done as possible to eliminate other possible causes.

    None of us thought we'd be the one ending up with a chrionic illness but unfortunately it happens. How well you cope with it is the main thing as far as future quality of life is concerned and taking control of it is the first step...

    Onward and upwards... :-)

    • nichola99319
      nichola99319 artistmike

      Posted

      thank You , I will make some big changes to my life, and do what you advise, is it normal to feel low when you have a flare up too, I have gone from last week feeling positive and full of life to feeling really down and fed up, I usually feel like this when I get a flare up but wondered if others feel the same, I know it will pass, it's just a shame it happens to us, feeling bit bitter, and frustrated today, as I thought I had cracked it with being great for 4 weeks, but I need to be positive and try and take on board what I need to do to improve my life

      thanks so much

    • artistmike
      artistmike nichola99319

      Posted

      Feeling low is perfectly normal and is a fairly normal accompaniment to low ebbs with ME/CFS. It's frustrating to go backwards with symptoms of this illness and especially in not having a feeling of control over your life, which is why I say that it's so important to find your plateau and know how to get there and stay there or those up and down cycles will get you down even more.

      Coming to terms with having ME/CFS is important. You need to do that as part of your recovery. Many do recover, if not fully to the extent of fitness they had before being ill and some never do. I've had it for fifteen years and am at a level of fitness that I'd gauge as being 20% of that prior to the illness. I still have relapses when I'm even worse but rarely and usually caused by things outside of my control.

      First thing though, get a diagnosis from a clinic and then you can start on the road to recovery.. :-)

       

  • jackie00198
    jackie00198 nichola99319

    Posted

    I'm unclear about your post. You seem to have classic symptoms of ME/CFS, yet if I understand you, you haven't been diagnosed? The doctors wonder if you have CFS? I'd see an ME/CFS specialist as soon as possible. Also, if you do have this illness, it's important that you pace yourself. Given the activities you describe, it's very lucky that you haven't had a major crash. And I don't mean just feeling fatigued for a few weeks. A crash can result in worsening symptoms for a very long period of time, even years. I don't mean to scare you, but you should pursue a diagnosis so you can lead your life accordingly.
    • nichola99319
      nichola99319 jackie00198

      Posted

      Thanks Jackie, that's what's worrying me because I have no idea how to pace myself. Should I be stopping all activities I do? 
    • jackie00198
      jackie00198 nichola99319

      Posted

      Do a Google search on "Pacing CFS." For instance, using this search, I found "Pacing Booklet - Action for ME," in PDF format. This is a good place to start. Basically, you don't want to push yourself, and you should space out your activities. But read the booklet and other info on pacing, on the Internet.
    • GeorgiaS
      GeorgiaS nichola99319

      Posted

      I've had ME for 10 years and I've never been able to get my head around pacing. It's pressure basically to even think about it. I was given pacing rules by an occupational therapist but I couldn't stick to them and they stressed me out because I couldn't so the whole thing made me feel worse.

      I just do what I can when I can and if I need to sleep or rest I do. Simple is best. Just listen to what your body wants and needs.

    • artistmike
      artistmike GeorgiaS

      Posted

      I think when we have had ME for a good period of time we know how much we can do without putting ourselves through the boom and bust cycle that is so destructive to us. and can listen to what our bodies are telling us,

      People who newly contract the condition though can easily think to themselves that "I feel fine better today so I'll do more" and then find that the next day they crash as a result.

      I've never followed any formal pacing regime but have learned the level of activity that I can function at, that doesn't incur feeling dreadful as a result and that's probably the most difficult bit to grasp as a new sufferer and a discipline we must learn to maximise our quality of life..

    • GeorgiaS
      GeorgiaS artistmike

      Posted

      Yes well said Mike, you explained it far better than I did. There are occassions though when through life's circumstances that we're forced to do more. It's happened to me lately and I recognised when I'd done too much and stopped and rested and slept for a few days.

      Basically a team of carers were coming to help me clean up my home because my care was stopped for a long time through cutbacks so it got into a terribe state. I've asked them to let me have a week off because of the stress of it and too much of physically doing things! 

      Never thought I'd end up asking carers for time off! lol cheesygrin

    • nichola99319
      nichola99319 jackie00198

      Posted

      Thank you I will have a look, I will strip everything back, and read pacing booklet, as I don't want keep crashing and having time off work
    • nichola99319
      nichola99319 GeorgiaS

      Posted

      I guess I have been I thinking the stuff I was doing was going to help, but actually the yoga was physical, I was planning my weeks around activities as I felt ok, I had a blip in the week and felt tired but day after I went yoga and ignored what my body was saying , I will now start listening more and rest up.

      we have bought a puppy and I think the stress has probably not helped I was trying to do all training, and was basically doing too much. I have gave up the physical yoga classes, and will try to stop planning. I am one of them people that struggle to relax I get bored easily and have anxiety too, so the combination not great as the exercise and keeping active distracted me and made me feel good, till I crash. So I now know that living that way is not actually good for me at all.

      i was living my life and comparing my activity levels to people without ME, saying am not over doing it. But in reality I now know my body can't handle it

       

    • nichola99319
      nichola99319 artistmike

      Posted

      I suppose it's a bit like trial and error? And learning to recognise the signs to stop and rest. I have always try to plough on, until I physically can't as my body won't let me. It's a wake up call really to be honest. sometimes it takes other people to point things out too, my work colleagues have told me to slow down and stop doing so much, and it's easy to ignore when you feel well and I guess I was not really aware of pacing myself. you kind of get away with it, but then boom, and I hate feeling the way a crash feels, 

      am still be confused of what I can do, I suppose it will take some getting used to.

      i was really upset when everyone was telling me I had over done it, I felt frustrated and angry that I have to stop doing things , I am trying to learn more about the condition and this forum is fantastic, it has helped me to realise the mistakes I was making.and am hoping I can learn to pace myself more and control my life

    • GeorgiaS
      GeorgiaS nichola99319

      Posted

      I relate to everything you said! I was taught to do gentle yoga on the bed by an occupational therapist, and although I really tried to keep it up and my body felt more supple etc the sheer stress of forcing myself to do it every morning when I woke up ended up defeating the object! eek

      Another occupational therapist told to eliminate everything that I don't need to do and that's really great advice. To just choose a few things to do means we can enjoy them more and handle doing them.

      I struggle to relax, suffer from anxiety and get bored too. My body might be going at a snail's pace but my mind is always racing. I've heard it said so often that people who get ME are extreme, energetic, reach high people, and that was certainly true of me. 

      It still is but I just have to do things differently now. The best lesson I've learnt from having ME is to be gentle with myself. I'm far from good at it but I'm a bit more careful with myself than I used to be and that's a great lesson for anyone to learn! razz

    • wknight
      wknight nichola99319

      Posted

      Been there, done that far too many times, and collected far too many tee-shirts......

      Once I took the step back and said this is as much as I can do and no more. Yes I gave up lots of things and one hobby that I really enjoyed. Then I noticed that I wasn't spending so much time in bed of doing nothing.  Result!!

      Once I had that base line I slowly started to increase my activity and learnt the signs. Last night went to bed early as I could see the early warning signs

      I don;t keep an energy diary or anything like that, simply control my life. I do book things but now I cancel if I am tired rather than plough on like I use

    • nichola99319
      nichola99319 GeorgiaS

      Posted

      Aw thanks you Georgia, I have such an over active mind, that struggles to switch off. I have been having life coaching and doing meditation to help but I struggle to concentrate. I am stubborn too, but once my head realises what I need to do I will act on it. I also can get bit down when not doing things I enjoy, but your advice is so good. If I also focus on one or two things and relax the rest of the time, I will hopefully look forward to enjoying those things more.i am trying to learn to not plan and take each day as it comes, this is something I am working on, 
    • nichola99319
      nichola99319 wknight

      Posted

      Good advice, the main thing is like you say spending less time in bed, and if that means giving things I enjoy then that's what I will do. It's took me a few days to realise and accept that. It's all new to me, before joining this forum I had no idea about the patterns of ME, and pacing. I thought that resting when I crashed was enough, no wonder I am in a vicious circle, fingers crossed I can improve this now
    • artistmike
      artistmike nichola99319

      Posted

      Nichola, we've all been through it and eventually we all learn that you can't beat ME/CFS, you just have to learn to live with it and that usually means making a lot of changes to our activity levels. I know that I've had to give up a lot of my prior interests but tried to find other, less energetic interests to replace them.

      The big rule in life that I've found with ME/CFS  is ... Never, never, never, ever say " I'm tired but I'll just do this job before I have a rest ".

      You just shouldn't be getting to the state that you're tired in the first place and if you have, you defininitely don't keep pushing, that's the guaranteed recipe for a crash. We always pay the price, there's just no way out of it .....

      The other benefit of course is that if you do learn to pace yourself properly within your limits, you can find yourself improving, or at least not feeling quite as bad and let's face it, to us, that's a great feeling... :-)

    • nichola99319
      nichola99319 artistmike

      Posted

      Thanks you. That's the mistake I have been making, I was really tired last Tuesday and freezing, does this condition affect you tart way, I do find I am always cold, but when I flare up I can't get warm at all. I literally went bed with fleece pj and fleece dressing gown I was so cold.

      anyway, I made the mistake of feeling tired so I did sleep 12 hours on/off with the weirdest dreams ever. But instead of resting the day after, I went yoga, hence the crash on Saturday. I am so stubborn that I have ignored the tiredness and got on with things, but then obviously I crash and can't do a thing.

      i now know from this forum that I have been doing things so wrong, I have been my own worst enemy. Even people around me can see it and I was ignoring them too. 

      How are you on holidays because they also make me Ill I rest all day, but am so drained at night that I need go bed very early and I do nothing.

      i also find I can't swim as this makes me ill too .

      and if I drink alcohol that makes me very tired, as if I am intolerant to it 

    • wknight
      wknight nichola99319

      Posted

      Feeling cold is one of my warning signs.

      holidays I try to build up a bank of energy but often go to bed early and my friends know why 

    • artistmike
      artistmike nichola99319

      Posted

      Well we all make mistakes and that's the real benefit of being able to share experiences with other sufferers.. :-)

      I always feel cold too, I've still got the central heating on now and I've a log fire too when I need it... I cacn't remember when I last felt warm and when I do it's the reverse, sweat pours off me and I feel ghastly, can't win really... :-)

      As far as holidays are oncerned, I haven't had one for fifteen years. I know full well that all the stress and change in routine just makes me feel horrible and put me back, so I don't see the point. I just spend the money I would have spent on the holiday on treating myself to things that make life more plreasant while I'm at home, that way I get the benefit all year.

      As to alcohol, like you it makes me feel ghastly so I gave it up totally, and believe me for someone that likes his malt whisky, that wasn't easy at all but I feel miles better for not ever having any...

      My philosophy is, if things make me worse, don't do them. I've a completely changed lifestyle nowadays from what I had but at least the ME is under control, if not cured ..... Life is too short to envisage the rest of it feeling ghastly , it's allabout making yourself feel as good as you can... Onwards and upwards... :-)

    • GeorgiaS
      GeorgiaS nichola99319

      Posted

      You've just reminded me that at first I used to be so freezing cold that I'd sleep in my clothes with a dressing gown over them, tucked up in an arctic sleeping bag, with duvets on top and a hallogen heater next to me and I slept by the radiator, and I was still cold! eek

      But, and I know everyone grumbles about the menopause, since I've had that I'm either warm or too hot and I wear few clothing and have a cool fan blowing on me all the time! 

      On the practical side what we eat helps or hinders our internal homeostasis (temperature control), Healthy food is incredibly medicinal. razz

      And if you can tolerate some spicy herbs in foods eat them if you're too cold. Most people can handle garlic. 

    • GeorgiaS
      GeorgiaS nichola99319

      Posted

      Before I got ME I used to meditate a lot but I can't really do it now because it takes focus and concentration, and also sometimes it just makes me fall asleep, which is good but not my intention of meditating! rolleyes

      Mindfulness meditation is a good way because all it entails is being in the moment. Sometimes just staring at a picture or at the garden outside my window without thinking is so calming and in the long run energising.

      Sometimes my brain just stops and it feels nice. Kind of dreamy. At first I used to fight it and try to focus, especially when I was trying to do a task and my mind went blank, but it was so frustrating and not helpful so now I simply go with it and enjoy it, it's just my brain having a rest and healing! cheesygrin

    • GeorgiaS
      GeorgiaS artistmike

      Posted

      Steady on Mike, lots of people beat it! Have you read the book of 50 people who recovered and how they did it? I get emails from the woman who wrote it with new recovery stories all the time.

      Talk to George in here because he got better with diet after suffering from it for 10 years. Yes! And he's no spring chicken either.

    • nichola99319
      nichola99319 wknight

      Posted

      Gosh see all these things I am learning, I was even really cold at night on holiday abroad. I suppose the build up and planning can be draining too, good idea about building up a bank of energy before hand
    • nichola99319
      nichola99319 artistmike

      Posted

      Wow it all makes sense now, I recall going away for a weekend in log cabin and having few drinks, but then falling asleep so early it ruined my night, plus day after I just want to sleep, sometimes it gives me vertigo too weirdly enough .

      i too have the central heating on, and people do laugh at me at work as I always pop my heater on and always wear knitwear all year round, rare I wear summer stuff due to cold.

      your so right though, why do things that make you feel worse. It's not much fun for the family when I want to go bed early on holiday, a weekend break is ok, I can cope with them  better

      thanks 

    • nichola99319
      nichola99319 GeorgiaS

      Posted

      I love spicy foods, n garlic. I was eating healthier stuff but it was stressing me out making it and we wasn't enjoying eating the foods, I have gone back to my Philadelphia recipes now as they are so quick and easy and very tasty. 
    • nichola99319
      nichola99319 GeorgiaS

      Posted

      Yeah my mind goes off on one, I don't mind the guided meditation which is more relaxing, but then I was getting up earlier to it in mornings, but in hindsight this may be a mistake as I am putting pressure on myself to get up and do it, rather than see how I feel and if I have time. 
    • artistmike
      artistmike GeorgiaS

      Posted

      Yes of course quite a few do recover, though there's no one way of guaranteeing a recovery using any one particular method, so it would seem more likely that some bodies just manage to repair themselves and recover from it, while some don't.

      Tales of succesful recoveries using this or that method are often apocryphal and non-replicable unfortunately, otherwise everyone would be cured and there would be no problem... :-) As I say, some just get better thankfully.

      While we all strive for recovery, it's sensible though in the meantime to give ourselves the best chance of recovery or at least the best quality of life while we work towards it.

      I live for the day I can get back to my trout fishing, that's what keeps me going.. :-)

      I'm a lot better than I was in the early days and most of the time have it under control at least.

    • GeorgiaS
      GeorgiaS artistmike

      Posted

      It sounds like you're doing really well! razz

      I agree with you on methods because we're all different and can spend a lot of money because it worked for someone else. I'm a firm believer in diet and herbs, not someone else's methods.

      I'm better than I was too and when you catch some trout I want one, I love trout!

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