International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Now very severe HELP

Discussion in 'General Treatment' started by MartinDH, Feb 27, 2018.

  1. MartinDH

    MartinDH Senior Member

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    Definetily overdid it. this crash came bc I crashed during a crash... I am just lying here having my eyes closed the whole day to not crash. Might that help?
     
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  2. MartinDH

    MartinDH Senior Member

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    Think it is like astronauts food
     
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  3. jesse's mom

    jesse's mom Senior Member

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    I am so sorry you feel so bad! Ensure is good for me.
    Also i listen to podcasts on SoundCloud. The ones that carry me through meditations are helpful and the guides/ teachers usually have soft soothing voices.
    I also listen to Dharma talks on there.
     
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  4. andyguitar

    andyguitar Senior Member

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    Fresubin is used for those who have problems swallowing. It's good stuff and will keep you going. A relative of mine lived on it for about 2 months after having a stroke.
     
  5. MartinDH

    MartinDH Senior Member

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    Cant listen to podcasts cant tolerate Any sound
     
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  6. MartinDH

    MartinDH Senior Member

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    This crash came because I went to the toilet on monday without wheelchair while having a crash... is there any chance it wont last long ... i want to be able to talk again... days are loooong
     
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  7. andyguitar

    andyguitar Senior Member

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    Very hard to say how long it will last Martin. Your chances of it being over in a week or so will be much better if you have total rest. No stimulation at all. Bit like hibernation. And if you are taking any stimulating herbs give them a rest. Stimulation does not just come from outside. Also from within. Everyone here is with you, and we all know you will be back.
     
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  8. MartinDH

    MartinDH Senior Member

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    Thank you all
     
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  9. Silencio

    Silencio Senior Member

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    Yes. I think a lot of that is in order for you for the next long while. I was never so bad that I couldn’t get to the bathroom. But I did spend most of 4 months in a dark room and only whispering to my family to control symptoms. It’s awful and it can last a while, but the best thing to do for yourself is just that.. rest, don’t speak, protect from sound. Text people for support. Just wait it out and eventually you will improve. I would advise to not let them take you to hospital, in case your roommates are considering that, if they are frightened for you. the noise there would be overwhelming and they prob cannot help.

    Hang in there.. be patient. Take meds if you need to. I have always found codeine and ativan help my wiredness, headaches and sleep, but small doses.
     
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  10. TenuousGrip

    TenuousGrip Senior Member

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    I'm so sorry, Martin. What a horrible and frightening thing for you to be going through.

    Es tut mir leid.
     
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  11. lior

    lior Senior Member

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    Sorry you're feeling so bad :(
    It will pass!

    I have found this to be very true... I've found crashes go away faster and more pleasantly if I don't get upset and frustrated, and just relax into it as far as possible. It's taken me time to learn to do this, because I was so demanding of myself. I understand that you have high standards for yourself too, right? You're ill, so you're allowed to let yourself not be demanding of yourself right now, in order to relax, in order to get better quicker.

    It can be scary to know what it's like to be this ill. :( hope it passes very soon for you. x
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    How are you doing with the Fresubin? I have never heard of it before your post. It is interesting re: your psoriasis being better (or gone?) when you are in a crash. There must be some autoimmune mediated connection although I am not smart enough to figure it out.

    Andy, is Fresubin a European product? I know Martin in Germany and I think you are in the UK? I don't want to sidetrack the thread but my mom is unable to eat food any more (from cancer) and I am wondering if she could tolerate this product. I will Google it shortly but was curious if you know more and it sounds like it really helped your friend who had a stroke (and hopefully is helping Martin, too).
     
  13. Mel9

    Mel9 Senior Member

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    I looked it up and it seems that Ensure is milk based. If you, like me, cannot tolerate milk, you could try pea protein instead.
     
  14. Mel9

    Mel9 Senior Member

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    There is an old thread here 'Aggressive rest therapy' that might be useful
     
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  15. MartinDH

    MartinDH Senior Member

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    Wow ... I cant take for month
     
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  16. andyguitar

    andyguitar Senior Member

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    If I remember correctly @Gingergrrl Fresubin is made in Germany. It's use over here in UK is pretty standard for people who, for medical reasons are unable to eat normally. It's quite costly but we get it on the NHS. There must be something that is basically the same in the US. I could well be very helpful to your mum as it contains all the nutrition ie vits/mins/fatty acids and calories that we need. Company is called Fresenius Kabi. They have a branch in US.
     
    Last edited: Mar 1, 2018
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  17. MartinDH

    MartinDH Senior Member

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    If there wont be any improvement in the next days it will Drive me crazy... im feeling ok as long as I keep my eyes shut and think of positive things... but when I open them or move I get weird and weak... it’s the horror... I really cant do Nothing
     
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  18. andyguitar

    andyguitar Senior Member

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    Yes it's crap and even opening your eyes will make things worse as it is stimulation. Your body wants to shut down for a while. Dont fight it.
     
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  19. Silencio

    Silencio Senior Member

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    I remember that feeling.. it’s like suffering every second, and every ten minutes feels like an hour. But just hold on, you have to and you will come out the other side eventually. Maybe it will not take too long. You will discover that you’re stronger than you even think.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much, Andy, and I just bookmarked your post. I am wondering if Fresubin is comparable to Ensure or Boost (in the US) which are not great products IMO and my mom cannot drink them. We were getting her to drink a product called "Orgain" instead but it has too many ingredients that do not agree with her. She may just be unable to eat any more and the one food she tolerates best now is just drinking milk. I will look into this product (Fresubin) and learn more about it. Thank you again (Martin and Andy) and I really appreciate this info.
     
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