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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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How Do You Handle the Summer?

Discussion in 'Phoenix Rising Articles' started by Mark, Jul 4, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
  2. HowToEscape?

    HowToEscape? Senior Member

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    Funny. I love being outdoors and would go for a run in any temp up to 100F prior to being sick. Afterwards, I get knocked out after being in even moderate heat. I've gone out many times either through neccessity or with a plan of "I'll just dive into an air conditioned space within 20 minutes, that'll be fine, right?", then being un or semi conscious the next day.
    I'd love to be outside more, but I have to consider the consequences.
     
  3. HowToEscape?

    HowToEscape? Senior Member

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    Er, that was poorly written. By 'afterwards' I meant after becoming sick and also after heat exposure. Two logically separated elements collapsed into one sentence.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    HowToEscape?

    Ever try a cooling vest? It saves me in the summer. ;)

    Sushi
     
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  5. SOC

    SOC Senior Member

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    My experience is similar, although I also get a rash from any sun exposure. I'd love to be out in the summer, but the consequences aren't worth it. I tend to dive from one air-conditioned space to another.

    Now that I'm feeling a lot better, I'm experimenting with the heat and sun to see if I'm less sensitive now. My short experiments with being out in the heat suggest that that symptom is less severe. I haven't tried exposing my skin to the sun yet. Now that I finally don't have red pinpoint specks all over my arms, I'm not eager to risk a rash right away. Maybe next month. ;)
     
  6. PNR2008

    PNR2008 Senior Member

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    I can go out on overcast days that aren't too humid but the last 5yrs, I'm always better after 7pm in the summer. Even though I love the outdoors and love living on porch and patio, the summer months zap me of any energy. I usually ride the bike with dog or walk right before dusk. I actually feel faint in heat and lie on wicker swing or loveseat with my feet up. It's the most normal acting thing I do. People go past and say "that's the life", I laugh and think if you only knew. Most of the time I'm sorry to say I'm in A/C and it getting worse every year.
     
  7. Jody

    Jody Senior Member

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    HowToEscape,

    I feel your pain. Used to be the same way. Perhaps in time this will change for you as well.
     
  8. Jody

    Jody Senior Member

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    SOC,

    Sounds like some of the symptoms I've read about for photosensitivity. My understanding is that this is a bit different from "mere" photophobia. Photosensitivity can cause the symptoms on your skin that you describe. It is known to happen to many people with ME/CFS.
     
    SOC likes this.
  9. Jody

    Jody Senior Member

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    PNR2008,

    I understand. It is a miserable thing to deal with. I can relate to people thinking I was "lucky" in my "laidback" lifestyle. To some casual observers I must have seemed like I was just on vacation all the time. If that were the case, I had the worst vacations of anyone I knew.
     
  10. HowToEscape?

    HowToEscape? Senior Member

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    Never thought of that! I thought that was exotic gear only used by swat teams and such. You can buy them? How much, and how long can they work at a stretch?
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Look here: http://activemsers.org/gear/testcoolingvests.html

    An MS site tests different ones and also offers a discount. Quite a few of us here have used them. I have the Arctic Heat though there are better ones now that can last about 4 hours.

    Sushi
     
    SOC likes this.
  12. rosie26

    rosie26 Senior Member

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    I love summer, where I live the temperature usually only goes as high as 30degrees C, it's mainly in the 20- 28 range.
    I find though that I have to wear shorts, as being overheated can be a problem. But found the shorts work well with that problem. I don't have a problem with the photosensitivity anymore, thank goodness!

    I can't handle the cold in winter, my ME always deteriorates . I think because I shiver and shake a lot, and takes a lot of energy. Also the cold stirs up my sinus symptoms and I feel weaker overall. I get feelings of dread as winter approaches.
     
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  13. Jody

    Jody Senior Member

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    Rosie26,

    That sounds alot like me. I don't handle our hot humid weather like I did before I was sick, but it is preferable to what cold does to me. I feel cold before anybody around me does, and am prone to muscle pain, tendinitis, swelling from inflammation -- just from being a bit cold. Our floors are never quite warm, except for a month or so in the middle of the summer. And if I go barefoot in the house most of the year, I will end up with pain in my feet, swelling and may be rendered unable to walk for weeks on end. So even when it's 90 degrees outside, I make sure to wear sandals to protect my feet from the "cold" floor.
     
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  14. rosie26

    rosie26 Senior Member

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    Jody

    It doesn't seem fair that you only get one month or so of being able to walk comfortably in bare feet in the house. The cold causes inflammation to start up alright, it feels like the nerves/neural pain starts intensifying.

    If I had a big house, and the money, I'd invite you here to spend the summer !! :) :)
     
  15. Jody

    Jody Senior Member

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    lol

    What a great offer. What part of the country do you live in? :D
     
    rosie26 likes this.
  16. Misfit Toy

    Misfit Toy Senior Member

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    For years, summer was a bad time for me. I dreaded it. It's like the same as winter; you can't go out without dying of humidity and heat...just as winter you can't go out without feeling ill from the cold. So, for a long time I preferred winter and liked the quiet that it brought. People are hibernating and that fits in with my CFS.

    Then, suddenly I started having SAD during the winter. Winter started bringing me to my knees, I would catch everything that came around, etc. Also, I have extremely low vitamin D. I feel so depressed now in the winter and I feel like my CFS just caves.

    Today, I went to a pool. I do this as much as this illness allows because I feel so much better after a day outside and with the sun hitting my face and body. Plus, the pool helps with my pain. But even without the pool, I love to be outside. Of course, if it's too hot, that's not going to happen but even just seeing the beautiful sunshine outside just brightens my mood so much.

    I now want to move where there is sun all year round and it's warmer. Where as before, I wanted to live where I could be close to mountains, freezing temps and snow.
     
  17. rosie26

    rosie26 Senior Member

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    Jody

    New Zealand x ( need to win a lotto) ! :)
     
  18. Jody

    Jody Senior Member

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    Misfit Toy,

    I'd crash like clockwork every fall ... weather was still summer weather, but once the days started getting a bit shorter ... I'd start to slide.

    The pool sounds lovely, soothing. I think all of us who can't take the extremes of temperature should live somewhere where it's 72 degrees all year, with low humidity. And plenty of pools.:)
     
    Misfit Toy likes this.
  19. Jody

    Jody Senior Member

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    New Zealand? I've always wanted to go there.:)
     
  20. SOC

    SOC Senior Member

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    I had SAD, too, for a while. High dose vitamin D helped me a lot -- liquid under the tongue, not pills. I still take it because I don't get sun on my skin these days.
     

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