The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Why do I feel sick after water exposure?

Discussion in 'Lyme Disease and Co-Infections' started by wondrous, Nov 30, 2016.

  1. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    If anyone can shed light on this unusual and extremely enigmatic symptom I experience, I will be forever grateful!

    After I take a shower (hot, cold, low pressure, high pressure, location - doesn't matter), bath, wet my head to do my hair, or stand out in the rain, I exponentially feel sick as the hours pass. Symptoms include irritability, systemic tingling, pale face, and glazed eyes, and can last a whole day or 2 depending on the exposure.

    It's an extreme physical and mental discomfort and debilitation. I've gone so far as to describe it as if it were ever a method of torture, it would be illegal.

    As you can imagine, every doctor I've been to can't make sense of it. I've even sat down to try and reason through it logically, but I'm left with no conclusion, thus no solution. I feel like this is a really uncommon symptom and just need the right person to see this post.

    Any help, any hints, or any ideas, I am all ears! If you need more information from me for a reasonable suggestion, just ask! Thanks. :(
     
  2. Hip

    Hip Senior Member

    Messages:
    9,342
    Likes:
    14,624
    Does any other form of tactile stimulation produce the same results of feeling sick (eg, brushing your hair, or caressing your skin)? The only thing I can think of is that tactile stimulation of the skin induces the release of endorphins, and endorphins are immunomodulatory.
     
    Last edited: Dec 1, 2016
    ECAsson, taniaaust1 and wondrous like this.
  3. Neunistiva

    Neunistiva Senior Member

    Messages:
    234
    Likes:
    1,316
    Air is a good heat insulator, while water is not. Being exposed to water makes our bodies work extra hard to keep body temperature and like any other exertion, it crashes us.

    That was the only reasonable explanation I could think up for this strange intolerance to water we people with ME/CFS have.
     
    ECAsson likes this.
  4. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
    I don't doubt your symptoms. I wonder whether there could be a way to test whether it's the water itself, or the amount of activity necessary to have a shower.

    Maybe lie down for 10 minutes with one hand soaking in a bowl of warm water to see if that has an effect.

    I have to rest for several hours after showering, but I put the increased symptoms down to the activity of undressing, showering, towelling dry and dressing.

    I now employ a carer once a week to help me with combined shower and hair washing and drying, so I only have to lie down for a couple of hours afterwards, instead of a whole day.

    Maybe another test would be to go through all the physical motions of having a shower without actually turning the water on and seeing how you feel.

    As I say, I don't doubt you, but a couple of experiments like these might help to convince sceptical doctors.
     
  5. Neunistiva

    Neunistiva Senior Member

    Messages:
    234
    Likes:
    1,316
    I have severe ME and my mother washes my hair in a little inflatable pool in my bed (we've picked this up from a video of Whitney Dafoe). I lie still with my eyes closed, there is no noise or other stressors and I crash heavily every time.

    I'm not sure a hand would be enough since human hands and feet react to cold by vasoconstriction (thus why our hands and feet get cold even when our bodies manage to maintain temperature), so it's not the same getting your head or torso wet, or hand and feet.
     
    trishrhymes likes this.
  6. ryan31337

    ryan31337 Senior Member

    Messages:
    445
    Likes:
    990
    South East, England
    Do you consider the 'tingling' to be itchy? Perhaps consider https://en.wikipedia.org/wiki/Aquagenic_pruritus ?

    I suffer from this quite regularly, waxes and wanes but its worse in a general flare up and/or when my liver is taking a dive. Can leave me very tired after showers too.
     
    taniaaust1 and trishrhymes like this.
  7. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
    Good point. Maybe lie with a warm wet flannel on your stomach for 10 minutes, then another day do the same with a cold wet flannel.

    Or ignore me. I'm only making these suggestions in case you need for any reason to convince a doctor or someone else who is skeptical. Otherwise doing such experiments is pretty pointless.
     
  8. roller

    roller wiggle jiggle

    Messages:
    451
    Likes:
    215
    you could eat a chunk of chopped ginger (or ginger capsules...) right before the water.
     
  9. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    @Hip, what an interesting suggestion! I've always felt like something was being "released" from within due to an external stimuli. I've even described the feeling as being "poisoned", or what I imagine being poisoned would feel like. It's like my whole body feels physically disgusting, or something bad is running through my veins.

    Yes, now that you mention it, water doesn't necessarily have to be involved, as rubbing a dry (powdered) shampoo into my hair can induce the feeling, but in a less intense version

    @Hip, do you have any more information on the phenomenon? Is there an official condition name?
     
  10. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    Hey @Neunistiva, thanks for the response! I know the "crashed" feeling you're referring to -- as I have been diagnosed with POTS -- but this feeling is a completely different animal.

    I can say that this unusual response I have to water -- or as @Hip is deducing, to external stimuli -- can occur or be thrown on top of a "crashed" feeling if I put myself in such a situation. For example, I can run my head under water, get this unusual response, but have no crash. Alternatively, I can take a hot bath, get this unusual response, and feel "crashed" as well.
     
  11. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    Hey @trishrhymes, I appreciate the suggestion!

    I like the experiment you've proposed, and it makes sense, but I think I've already performed it inadvertently. I used to work in a restaurant, in which I would clean dishes with really warm (sometimes hot) water for minutes at a time with no gloves. I've never induced this unusual response from this activity.

    You mentioned that you need to rest after showing - I don't. This unusual response I have doesn't fatigue me in any way.
     
    taniaaust1 and trishrhymes like this.
  12. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    Hey @ryan31337, thanks for the input!

    Yes, with the systemic tingling that occurs, it can also be blended with a slight itchiness. However, this extreme of a response only occurs after taking a shower or bath, or when the external stimuli is great. Rubbing my head with a dry (powdered) shampoo doesn't cause the tingling/itchiness, but it does bring out a milder, but still debilitating, response.

    Also, I read a little bit on the condition you suggested, and it was noted that Aquagenic pruritus can occur from 10 minutes to 120 minutes. For me, my unusually debilitating response after a shower, bath, or even just rubbing my head with a dry (powdered) shampoo, usually lasts for a couple of days.
     
  13. ryan31337

    ryan31337 Senior Member

    Messages:
    445
    Likes:
    990
    South East, England
    Doesn't sound like a perfect match to be honest, pruritius in my experience is usually a very acute, 'stabby' itch that's unsatisfying to scratch. It sends me running to cover up as that seems to damp it down.

    Have you seen a dermatologist with an interest in systemic allergy perhaps? I've learnt from bitter experience that unless you see someone with a subspecialty interest in whatever complex/rare disorder you have you are generally wasting your time :(
     
  14. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    To further encourage ideas, or support what has been mentioned already, here is a list of specific instances which induce this unusual, debilitating feeling:
    • Taking a normal, whole body, really warm shower (location is irrelevant)
    • Taking a warm bath without putting my head under the water
    • Placing just my head under running, ice cold water for less than a minute
    • Taking a warm shower in which the water only touches my legs on down
    • Standing out in the rain for a couple of minutes, head exposed
    • Massaging just my scalp with a dry (powdered) shampoo
    • Getting a haircut or doing my hair

    Instances that don't induce this unusual, debilitating feeling:
    • Wearing a hat
    • Exposing my hands or feet to warm or hot water for extended periods of time
    • Swimming in a lake

    I really appreciate so much all of the suggestions thus far! All of you are so willing to be helpful, and that means a lot to me. :(
     
    trishrhymes likes this.
  15. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    Hey @roller, what would the purpose of ingesting ginger be?
     
  16. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    Yeah, I do appreciate the suggestion though! I've actually never heard of Aquagenic pruritus, but if some waterless instances didn't induce this feeling I get, or the duration of its existence was more acute, I'd definitely consider Aquagenic pruritus.

    I haven't seen a dermatologist to consider an allergy. I would love to see a specialist who can assist with this debilitating feeling I get after water exposure and external stimuli, but I wouldn't even know the type of specialist to see.
     
  17. Hip

    Hip Senior Member

    Messages:
    9,342
    Likes:
    14,624
    There is no actual name for this situation, as far as I am aware, it's just my stab at a possible mechanism, and may be wrong. Normally endorphins make you feel good, and boost your mood, so it would be very unusual for the reverse to occur, where endorphins make you feel sick and irritable.

    However, if you look at the side effects of morphine (and remember that the name "endorphin" derives from "endogenous morphine," because both endorphin and morphine activate a similar range of opioid receptors), you see that morphine stimulates the vomiting centre of the brain, and can cause nausea, vomiting, abdominal cramps, constipation. So possibly under the strange neurological condition that we know as ME/CFS, the beta endorphin released through skin stimulation may be having these ill effects.

    Beta endorphin primarily agonizes the mu-opioid and delta-opioid receptors. So if beta endorphin were the cause of your sickness symptoms, then you might expect that other substances (eg, kratom, codeine) that activate these same receptors to have the same effects.

    Likewise, you might expect that drugs (such as naltrexone) which block the mu-opioid, delta-opioid and kappa-opioid receptors might prevent your sickness symptoms when taking a shower. Low dose naltrexone (around 4 mg daily before bed) is a treatment for ME/CFS, and you could consider trying some low doses of naltrexone say 1 or 2 hours before taking a shower, and seeing if it mitigates your sickness symptoms. Note that LDN may not work unless you also take vitamin D3.

    However, be aware that some ME/CFS patients respond very strongly to even the tiniest doses (0.1 mg) of naltrexone, so be cautious if you try this, and perhaps start with a very tiny dose. Especially in your case, where your opioid receptors may be acting in an unusual way.



    The skin tingling (paresthesias I presume) could be a different phenomenon: paresthesias are a neurological phenomenon often triggered by a change in temperature, such as exposure to heat.
     
    Last edited: Jul 20, 2017
    PatJ and wondrous like this.
  18. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    @Hip, a stab it may be, but it's the only suggestion I've heard in the past couple of years, in dealing with this debilitating symptom, that actually makes sense and has some type of merit.

    I know you're just reasoning through this as I am, but are you suggesting that an endorphin may be causing the opposite effect in my body because it's in greater quantity than normal? That it's not binding properly? How do you think it could potentially cause the opposite effect?

    I have taken kratom many times before, though not for a while, but have never had such a reaction.

    However, I did have a horrible reaction to both ashwagandha and hawthorn, with a cause that still eludes me to this day. I know ashwagandha can help modulate the immune system, but with your immune modulation theory, some type of immune response this may be.
     
  19. Hip

    Hip Senior Member

    Messages:
    9,342
    Likes:
    14,624
    Not really sure, but it could be that your system is over-sensitized to beta endorphin, so that when your body produces it, you in effect overdose on it, and that then leads to the negative effects. People with lower levels of leptin tend to have an increased response endorphins, so that's one way you might be over-sensitized to beta endorphin. This is just wild guessing though.



    Kratom is more of a delta-opioid receptor agonist (unless you take high doses, where I've read that it may then start agonizing mu-opioid receptors). Codeine (which in the UK you can buy OTC as Nurofen PlusĀ®) agonizes the mu-opioid receptors.
     
  20. wondrous

    wondrous

    Messages:
    59
    Likes:
    20
    Thanks for that brainstorming! I know you're just guessing, but I really appreciate your helping me develop a reasonable hypothesis that I can test (not sure how yet, though).

    Putting it all together so I can present this to my doctor, when I'm external stimulated (i.e., touched in a specific manner), the body releases a specific endorphin known as beta endorphin. The beta endorphin -- in my case -- is suspected of modulating the immune system in such a way that I feel sick.

    Interesting on the leptin levels. I was diagnosed with biotoxin illness, but the one test I didn't have run yet was leptin levels.
     

See more popular forum discussions.

Share This Page