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This helps me,,, but why

Discussion in 'General ME/CFS Discussion' started by Darran321, Sep 30, 2017.

  1. Darran321

    Darran321

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    Hi Everyone
    I dont often post,,, but i know there is alot of great advice on here,, i have had this illness only 36 months,,
    i suffer only with severe head pain and pain in my neck glands, no pain anywhere else, and no fatigue,,,
    its there 3/4 hrs a day,, alot will suggest i dont have cfs/me.
    i was told only by my doctor that it is..I believe i do have it because soon has i try any sort of exercise,,,, 48 hrs later my head pain will last for 3/4 days along with pain in my neck glands, also i get pain in parts of my face.

    I can get rid of all my pain by taking a 2/3 minute cold bath fully submerged, or cold cold shower 2/3 min,.this totally relives me of any pain and it can last all day.
    My question is its not a good experience and i am dreading winter,,lol,, what is happening to my body when i do this and is there any medication that would have the same affect,,,
    apologises for grammar and spelling
    Darran
     
    pattismith, Woolie, Wayne and 5 others like this.
  2. RuthT

    RuthT

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    Hi Darran. I’ve no idea why cold helps. I had whiplash following a car accident (on top of ME) and was in v bad pain. My Physio suggested cold showers, not amused as was v cold Jan), but gave it a go and really helped. She thought it helped calm the whole central nervous system down. Oddly enough my body really loved it, and still do it sometimes, even though back pain from accident gone.

    Some people with ME/CFS seem to report that anything that calms flight/fight response & shift to rest & recover mode does seem to help (management, not cure). Which particular thing helps differs from person to person: what helps one person or one day, could cause setback in/on another. Biological mechanism/ reason why is not clear to me.

    Big question is that fatigue is such a clear marker of this illness, is it worth getting a second experienced opinion from a Dr with an established ME practice? Could be missing something else v important.
     
  3. Wonko

    Wonko Senior Member

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    The other side.
    Not medical but one thing, amongst many, that occurs with cold water immersion is redistribution of blood from the skin to other organs, in an attempt to preserve body temp. I wouldn't have thought it was normal for this effect to last all day tho.
     
    Kenshin likes this.
  4. Hip

    Hip Senior Member

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    When you say "head pain", do you mean a headache, or is it a pain localized to an area of your head? Where is this pain in your head? The forehead? The back of the head? Side of the head near the ears?
     
  5. Darran321

    Darran321

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    Hi Ruth
    thanks for replying, yes may look at seeing another specilist doctor,,, ive had mri scan on head,, but all seemed ok
    just dread during cold bath,, yes meditation also helps
    darran
     
    RuthT likes this.
  6. Darran321

    Darran321

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    Hi Hip
    thanks for replying,, its not like a normal headache. Its located sides of head, top of head and back of head,, never get pain in the forehead or front of head,, the pain lasts 2/3 mins then goes,, then will reappear within a few minutes
    feels like someone is squeexing spelt wrong,, lol,, my arteries in my head and then releasing them its awful
    i have had everyday for the last 3 years,
     
    pattismith likes this.
  7. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
    Cold immersion (even dipping your face in ice cold water) is one technique for improving vagal tone - i.e; to switch the autonomous nervous system from the sympathetic fight and flight mode to the parasympathetic rest and digest.

    Perhaps that's helping?
     
  8. digital dog

    digital dog Senior Member

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    Cold water therapy is used for depression.
     
  9. Tammy

    Tammy Senior Member

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    My guess is the cold water is helping to decrease the inflammation to your nerve endings.
     
    helen1 and PinkPanda like this.
  10. RuthT

    RuthT

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    Hi Darran. Just watched the YouTube video of Prof Montoya talk at #CMRC17 hich is v interesting & helpful. Thought you might be interested in the diagnosis of other conditions misdiagnosed as MECFS, about 36 mins in.
     
    lafarfelue likes this.
  11. Kenshin

    Kenshin

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    A cold shower reduces most of my symptoms, but the effect only lasts around half an hour.
    I can only do it on hot days.
    I beleive it has something to do with vasoconstriction, improved blood flow, aswell as the things people have mentioned here.
     
    RuthT likes this.
  12. helen1

    helen1 Senior Member

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    A cold bath or cold water swim reduces most of my symptoms almost completely for an hour or two. I thought it was about increased endorphins and reduced inflammation but I see from the above comments it could be other things too.
     
    Kenshin likes this.
  13. lnester7

    lnester7 Seven

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    I put my money on OI ( and the vassocontriction of the water)
     
    helen1 likes this.
  14. Woolie

    Woolie Senior Member

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    Darran, cold baths have worked for me in the past too. For me, the effect lasts about 24 hours, like you said. Interestingly, I also have very bad headaches and pain in my throat glands.

    But its always a question of whether that 3 minutes of absolute torture is worth it, isn't it?

    I don't know if you have MECFS. But either way, the defining characteristics of MECFS are kind of arbitrary. Your throat gland pain sort of hints at some sort of inflammation/immune activity, and the fact that it gets worse a day or so after exertion also seems consistent with that idea.

    I'm figuring you're getting good medical care, so they have ruled out other nasties? Just the same, the kind of pulsing, throbbing feeling you get in your head you describe made me think of high blood pressure. Would be good to rule that out, if you haven't already.

    Whether or not your problem is related to inflammation, it could be worth seeing if NSAIDS give you some measure of relief. Things like ibuprofen and naproxen are available over the counter in many countries (not sure what the brand names would be in your country). If you haven't already tried them, might be worth giving them a go.
     
  15. Fogbuster

    Fogbuster Senior Member

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    Cold exposure has a pretty tremendous effect at reducing my symptoms and general stress hormones. I highly recommend trying to gradually embrace more cold exposure in your day to day life. It makes me feel great, this thread has reminded me how much benefit and better functionality I get from being outside in the cold, with of course the right amount of clothing.
     
  16. Darran321

    Darran321

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    Hi Wookiee
    Thanks for replying yes the cold baths are awful
    But I get relief for almost a full day I submerge my full body I dread it
    I do suffer with high blood pressure but I don't feel this is the cause can high blood pressure cause severe head pain,,, thanks for some great advice what helps with your head pain
    Darran
     
  17. perchance dreamer

    perchance dreamer Senior Member

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    I have a lot of inflammation in my back and neck, and cold packs I keep in the freezer help a lot.

    Several years ago I did cryotherapy at a clinic here in town. I did about 6 sessions and got a lot of pain relief. However, even though I did them early in the morning, the sessions had a terrible effect on my sleep. I think they overstimulated my sympathetic nervous system.
     
  18. J.G

    J.G

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    I'm glad I found this thread.

    I've had ME/CFS for years. About a month ago, I started thinking about lactate accumulation / clearance in ME/CFS. If Newton's studies are to be trusted (Cort's overview here), we produce a lot of lactate. (Probably because, as we know from Fluge & Mella's study, pyruvate dehydrogenase is inhibited, crippling the Krebs cycle, forcing us to instead get much of our energy from the messier process of glycolysis.) Too much for the body to clear fast. It may be a prime cause of brain fog and sore muscles.

    Lactate clearance is of course a problem in healthy people, too. Athletes in particular go to great lengths to boost their recovery. I remember reading years ago that ice baths - for reasons we don't fully understand - speed up exercise recovery. So I decided to give it a shot.

    It helps. It really does. I don't know why, but for an hour or so after I take an absolutely frigid shower, I feel much better than usual. The effect gradually fades as the minutes go by.

    So I've been thinking about it some more. Improved lactate clearance may be a factor. I have PoTS as well, and presumably exposure to icy cold consticts veins, which could be beneficial. So it looks like cold showers could be a double whammy: speed up post-exertion recovery and provide helpful vasoconstriction. Or maybe the effect simply comes from vagal tone stimulation.

    Frigid showers are not pleasant. Even easing into it by gradually lowering the water temperate, I loathe taking them. But so far, they help. The effect isn't overwhelming, but noticeable nonetheless. It hasn't expanded my "energy envelope", but my QoL is a little higher during those post-shower hours.

    Will the effects of icy showers last? I don't know. I'll report back in a few weeks / months and let you know if they're still helpful.

    P.S. Please be careful. Don't give yourself a heart attack.

    EDIT: wrote protein catabolism where I meant to say glycolysis. Fixed.
     
    Last edited: Feb 8, 2018
    RuthT likes this.
  19. RuthT

    RuthT

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    Thank you J.G. Really thoughtful post, so googled general advice re dealing with lactic acid build up and found advice which echoes what I already have found to be helpful in easing symptoms:

    Hydrate
    Be consistent in activity (ie don’t push envelope)
    Increase activity very gently
    Back off & slow up immediately symptoms show
    Stretch
    Foam roller to disperse lactic acids & release muscles.

    Will pursue.

    https://www.completenutrition.com/blog/how-to-reduce-the-buildup-of-lactic-acid
     
  20. Wayne

    Wayne Senior Member

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    Hi @J.G,

    Have you ever tried just laying on an ice pack to see if that might help? I almost always feel better after laying on an icepack, And even with that, I treat myself very gently. I put a thick towel over it, so that it kind of gradually gets cooler and cooler--never unpleasant. I'm glad I discovered this as cold showers are too extreme for me.​
     

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