Introduction and appreciation

Posted , 7 users are following.

Hi Everyone, 

Sorry if this isn't how things are done on the forum but just wanted to introduce myself, say hi and say how helpful this forum is. 

My name is Josh, i'm 25 and I became ill in February.  I lost 2 stone after a bad break-up and was pushing myself way too far.  I was drinking, not eating well and exercising far too much.  

I suffered an exercise induced anaphylaxis after a 5 mile run and was diagnosed with cholinergic/chronic hives in early february.  Around 3/4 weeks after that I started having to go to bed at 6 o clock in the evening which was very strange for me.  Then one day I felt so tired when I woke up that I could barely breathe.  For 3 months I was bed ridden, at times I couldn't even roll over in bed to get a glass of water.  I was 100% convinced i would die and was admitted to the emergency room many times during this period.  I have since had many many tests (MRI scan which did actually show scarring in my brain, lumbar puncture and countless blood tests.)  The only result that showed any difference to the norm was that my prolactin was high, if anyone could let me know why this might be i'd be very grateful.  

Having been in Canada on a Football (Soccer) scholarship for 2 years prior to this it has obviously been a major shift in the way I live my life and I sympathise with every single person on this forum.  

I am very worried about relapses, as there have been times when that deep, heavy, tiredness have crept back in.  That is why I joined this forum, so I can hopefully get some tips about not relapsing and trying to live with this horrendous condition. 

Thanks in advance, 


1 like, 19 replies

19 Replies

  • Posted

    Hi Josh, pleased to meet you!

    I'd say to not overdo anything. It'll be hard for you being an athletic type but you must learn to listen to your body and slow down.

    Good nutrition is very important also. How is your diet now?

    • Posted

      Nice to meet you too. 

      I am learning the whole 'overdoing' thing the hard way unfortunately.  In bed right now hoping that this isn't the start of a full blown relapse. 

      My diet is good, been a vegetarian since I was 18.  Lots of fruits and vegetables etc.  Is there a diet you'd recommend? 

    • Posted

      I've started on the Low carb, high fat diet, or keto diet. It's highly scientifc and there's been a lot of research done on it. I'm doing an Open University module on sports, exercise and nutrition and I'm learning about it from that.

      Lots of athletes are adopting that way of eating. It's found that after 2 weeks of less than 50g of carbs per day and high fat the body adapts to using fat stores rather than carb stores. We have a lot more fat stores in our bodies than carbs so this makes sense.

      On the diet people actually lose fat and gain muscle mass and it's supposed to be very good for health, which is why I'm trying it.

      The hard part for me is that I eat loads of fruit but it's quite high in sugary carbs so I've been changing to low carb fruit, a bit less of it and more low carb veg. I'm loving all the cheese, meat, fish, clotted cream etc though!

    • Posted

      By the way you can still do that diet if you're a vegetarian.

  • Posted

    Hi, Josh. So sorry you got this horrible illness. Have you actually gotten a diagnosis of ME/CFS? That would be the first step. You should find a specialist who'a knowledgeable, probably an infectious disease doctor or a rheumatologist. Because you're young and recently ill, you have a good chance of getting better. There is currently no treatment for ME/CFS, but you can learn to manage it. The key is to get adequate rest, pace yourself, and not go outside your energy envelope. Don't try to push through the fatigue. The idea is to prevent relapses by staying within your energy envelope, rather than having to recover after doing too much. According to Dr. Lucinda Bateman, a foremost specialist in the U.S.--overdoing may lessen chances for a recovery. I know this is very hard when you're an active person, but you'll put your long-term health in jeopardy if you do too much. Dr. Bateman actually suggests getting a fitbit-type monitor to check your activity level, so you'll have a good idea of how much you can handle without crashing.

    • Posted

      Hi Jackie, 

      I am actually confused as to whether I have been diagnosed or not.  I have seen a CFS/Pain Management specialist and have now been referred to another CFS specalist closer to me.  No one has explicitly said I have it but I am being treated for it if that makes sense.  

      What exactly is a rheumatologist? 

      I am really trying not to do too much, it's so hard getting that balance right especially as I used to play football 7 times a week, study and hold down 2 jobs.  

      I was recently on fluoxetine for 3/4 months but it's hard to tell if that helped.  

      I keep a pedometer app on my phone and try to do 6,000-10,000 steps a day but have definitely over-done it recently rolleyes

  • Posted

    Hi Josh,

    Welcome and nice to meet you! I'm 28 and from the UK, I noticed you said you were in Canada at one point, is that where you are now? Where I am there are no specialist centres but I've been referred to CBT. I found CBT really useful for helping me learn to listen to my body and learn to pace myself according to my symptoms. This has by no means been a cure or a quick fix I found that it has really helped me find my baseline of activity which has really stabilised my symptoms and life is a lot more manageable than it was (It's a slow process though and it took upwards of 4 months before I noticed any improvement so it).

    • Posted

      Hi Toni, 

      I am back in England now.  I came back for Christmas and unfortunately got ill during that period so had to stay. 

      I am doing self hel CBT now here in England but I don't find it very useful to be honest.  

      I'm glad it has helped you though smile

    • Posted

      Just curious Toni; why do you need CBT to listen to your body? Isn't it instinctive and obvious when you need to rest etc.

    • Posted

      Hi Georgia, actually no, I had a lot of trouble accepting when I needed to rest. I felt really guilty and would literally only rest when my body couldn't go any longer. I found the CBT was really helpful for me in learning to accept that it was okay to rest. I also found it helpful to talk to someone about my experience - I was feeling really stupid and guilty and had trouble accepting that I couldn't do everything anymore. Yes I realise that to some people with CFS I might sound a bit stupid not knowing when to rest but I've only had it for 2 years and for me I had a lot of trouble learning how to live in such a different way that really, really felt wrong to me. I also struggled a lot with the psychological impact of being unwell and CBT was really good at addressing this for me.

    • Posted

      Hey Josh.

      Ohh yeah I haven't ever done self-help - I did it with a therapist  over a 3 or 4 month period. I think its usefulness really depends what sort of thing you need help with really. For me, I think I enjoyed having the one-to-one sessions to talk about my experience and make sense of the way I was handling it in my day-to-day routine and psychologically and make changes based on that. I was in a really unhealthy boom and bust cycle and the lady I saw helped me rethink my routines and learn to say no to things which I had a really hard time with. If you're already managing your condition well then CBT definitely won't have much to add


    • Posted

      I wasn't insinuating that you're stupid Toni; just trying to understand how the CBT helps in that way.

      I know how hard it is to pace; my mind races sometimes and I'll do too much on the computer or studying, reading or something, or I'll stay up too late because I don't feel like going to sleep even though I know I should.

      It's not too much of a problem with housework etc because I'm just too weak to do things like that most of the time so I don't push that.

      I'm glad CBT has helped you! It's not for me but we're all different aren't we. Homeopathy and certain supplements are helping me at the moment and herbs have helped for a long time.

    • Posted

      Hi Georgia, I think I was having a bad day so I do apologise for coming across grumpy. I know that feeling of staying up late when you know you should be sleeping! I have found that a really difficult thing to address. We're definitely all different and I think that's the big problem with the health service where CFS is concerned - it'd be good if healthcare providers would take a more holistic approach to helping people manage their condition. 

    • Posted

      No worries, I though I must've come across wrong.

      It's hard to make myself go to sleep when I find myself feeling quite good late at night and I'm enjoying playing games or something because I don't feel good much of the time so I want to make the most of it. But I'll be worse tomorrow so it's not a good idea.

    • Posted

      Yeah! I know what you mean about feeling better later in the day - I feel my best later in the day - I'm glad I'm not the only one who experiences that - it's a real weird one.

    • Posted

      I remember when ME/CFS was referred to by some as the vampire illness. I, too, feel better later in the day, especially later in the night. I sometimes take advantage of this by going out with my husband to an all-night coffee shop--at 2 am.
    • Posted

      I feel better first thing in the morning and in the evenings. It's the afternoons that I'm the most fatigued, especially after waking up after my sleep.

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