New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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How to approach recovery?

Discussion in 'General Treatment' started by lowkey, Dec 10, 2015.

  1. lowkey

    lowkey

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    Hello everyone,
    I hope you are well, given the circumstances.
    I have a few questions about recovery. Basically, I have now had CFS for over a year. I was diagnosed in June 2015 with a 'mild' case. My day to day life is still greatly impacted. I have pretty much no social life now, because socialising is too exhausting. I am not housebound, but i tend to stay at home pretty much all the time, because i am very cautious of triggering a worsening in the severity of my symptoms. However, I am becoming frustrated with such a sedentary and boring lifestyle. I am a previously fit and healthy 20 year old male. I want to start actively trying to get my life back, instead of waiting until something magical happens. I am quitting my job (hospitality) and tomorrow is my last shift. I have dropped out of university for the time being, hoping to be back studying next year (probably in June). My question is - what now?

    Basically, I now have no responsiblities. I have a few months with nothing to do. I am moving home with my parents in February. So i can now dedicate every ounce of my being into recovery, a prospect that I am very excited about. So, how should I go about it? The specialist I saw in June (who diagnosed me) said that I should begin to exercise daily. Starting with a small bit, and very slowly increasing what I can do. My GP seconded this notion. What do you guys think? I can deal with a few days of feeling worse than usual following exercise, if it is going to have positive effects long-term. I am getting a bit worried that I am spending too much time lying down, inside. I feel as though I need fresh air and a bit of movement. But of course, I am terrified of pushing too hard and triggering a severe relapse or something.

    So basically, what should I do with all this time to recover?
    Exercise lightly?
    Should I try and lie down less? At this stage, I feel as though I want to lie down, but I don't have to.
    Is it worth investigating naturopaths or homeopaths or anything??

    PS- this info may be useful when answering: My main symptoms are fatigue, and strange feelings of pressure/swimming/throbbing etc in my head. I also occasionally get headaches and gut problems. I have trouble with cognition, especially with numbers. I have no aches or anything like that. I have hardly any PEM. I can have a stressful shift at work, and then feel no worse the next few days, which i Know is odd for CFS.

    Thank you so so so so much for your help. I hope everybody can find something to smile about today. For me, the thought of getting better keeps me going, I cannot believe how much I took for granted before, and I can't wait to experience life after coming through this CFS journey.
     
    Theodore likes this.
  2. Hip

    Hip Senior Member

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    Little Bluestem and helen1 like this.
  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    What kind of symptoms do you develop if you exert too much?
     
  4. Hutan

    Hutan Senior Member

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    Keeping a daily record of your symptoms is a good thing to do - as well as keeping good records of any treatments you try and of the results of any tests. Get your spreadsheets and clearfile folders ready.

    Good luck!
     
    TiredSam and helen1 like this.
  5. Hip

    Hip Senior Member

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    Being mentally shattered and exhausted after socializing is also PEM. Post-exertional malaise applies to both physical exertion and mental exertion.

    I myself don't get much PEM from physical exertion, but gets lots from the mental exertion of socializing. And there are some other patients on this forum that feel shattered and exhausted after socializing.
     
    taniaaust1 and helen1 like this.
  6. lowkey

    lowkey

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    I tend to try and minimise physical exertion, so i'm not too sure. I guess I get the 'tired but wired' feeling and maybe can't sleep as well? After mental exertion I feel tired pretty much straight away, and just feel generally bleh. But these things tend to not carry over into the next day
     
  7. lowkey

    lowkey

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    I have kept a daily spreadsheet over the last few months. I cannot find much of a connection between any activities and bad periods. It seems to me as though the severity of my symptoms travels in a cycle, and nothing I do has much impact on the cycle. I could rest a lot, or exert more than usual, and it won't really change
     
    Hutan likes this.
  8. lowkey

    lowkey

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    Cheers for the suggestions. Should I just ask my GP about them?
     
  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Interesting, I've just been assuming PEM from physical exertion was common to all ME folks - and assumed only a subset also experience PEM from mental exertion.
     
  10. Hip

    Hip Senior Member

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    If you are in the UK, your GP will probably show no interest.

    All except LDN are supplements that can be obtained without prescription.
     
  11. lowkey

    lowkey

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    I'm from New Zealand, and my GP is a pretty cool guy. Although far from an expert on CFS which is unfortunate. Odd how so many people in the UK have problems with their GPs when it comes to CFS :(
     
  12. lowkey

    lowkey

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    The specialist I saw also thought it was odd how little PEM i seemed to epxerience after physical exertion. Perhaps I am in a constant state of PEM? Perhaps I have been lucky in that department? Who knows
     
  13. Hutan

    Hutan Senior Member

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    Have you investigated orthostatic intolerance/POTS? Are you monitoring your blood pressure and heart rate when lying down and then standing up? There are some treatments if you have this symptom.
     
    Valentijn and taniaaust1 like this.
  14. lowkey

    lowkey

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    I was tested for POTS by the specialist I saw. She said the swimming head/dizziness symptoms were most likely a result of deconditioning. I'm not sure I 100% agree with her, but I have a feeling that my body is so used to lying down etc, that being upright etc is a bit of a shock. If in the coming months the symptoms in my head don't improve I will probably look for a second opinion on orthostatic intolerance.
     
    Hutan likes this.
  15. *GG*

    *GG* Senior Member

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    I wouldn't exercise every day. Is that even recommended for healthy people? Maybe I am confusing it with body building, either way, the body needs rest!

    GG
     
  16. Mij

    Mij Senior Member

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    I get swimming/dizziness sensations too and it's always viral. When I first became ill I felt as though my head was under water. It was very annoying.

    It's odd that the doctor told you it was deconditioning.
     
  17. TigerLilea

    TigerLilea Senior Member

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    I have been at this for 25 years and I'm still asking 'what now?'. :(
     
    Hutan likes this.
  18. lowkey

    lowkey

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    I do not mean running or weightlifting or anything. I mean small walks/stretching etc. When i was healthy i would play sports 4 days a week, and still be very active on the other 3.

    Did you find anything helped with those symptoms? mine wax and wane, but i can't figure out what makes them better or worse.

    i'm sorry to hear that. perhaps 2016 will be a good year for you, where you make some unprecedented headway. Personally, due to my age and mild case of CFS, i am quietly confident that 2016 will be a whole load better than 2015.
     
  19. Esther12

    Esther12 Senior Member

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    We don't know what can/should be done to promote recovery. There's just not good evidence, and personally I would advise against devoting a lot of time/energy/money to pursuing recovery when we do not have good evidence on how that can effectively be done. Personally, I would advise you to live your life as best you can, and keep your fingers crossed. If you're in the UK, it's entirely possible that your specialist is not trustworthy, but was promoting positive claims about recovery in order to 'reassure'/manipulate you.

    I'd be interested in who you saw and what they said.

    I really regret the time I spent pursuing recovery on the advice on my 'specialist' - it did nothing for my health, and just left me further from the life I wanted to be living with the limited health I had. Sorry for the negative post, but this is a bit close to my own negative experience. Hopefully your health will just improve naturally - a year is not that long to be ill (although I realise that it will not seem like it to you) and quite a lot of people can have a short bout of these sorts of symptoms before recoverying, with no good reason as to why.
     
    Hutan and SOC like this.
  20. Esther12

    Esther12 Senior Member

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    Also, if you're interested on how 'recovery' claims related to graded exercise and CFS are manipulated, this video could be of interest:



    There a lot of information on these sorts of things available if you are interested into looking more at the evidence for yourself.
     
    SOC likes this.

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