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ME/CFS: A disease at war with itself
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Dehydration?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by taniaaust1, Aug 10, 2011.

  1. taniaaust1

    taniaaust1

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    I noticed something new today and wondered if others have noticed they get dehydration which seems to be happening even when they've had a lot of fluid.

    I got picked up to visit CFS friend taking my 1Litre drink bottle with me which I drink in the couple of hrs I was there on top of that I had to refill it and drank half of that again. I also had a coffee while there. (so all up had close to 2L in 2 hrs thou i realise that coffee can dehydrate people).

    After a couple of hrs (in which I'd been sitting the whole time with my legs up on couch) of talking, I started to get unwell due to the excertion of holding convo with someone for that long.. so started feeling nausea and a general unwellness feel come in and a slight headache and sudden more sensitivity to things. So it was time for me to be taken home.. we went to leave only to have me collapse on the flloor as I went to stand.. my legs were shaking.

    My friend tried to help me up to get to the car but I just went down again, shaking still so ended up having to crawl out to the car. (I wasnt about to try again to stand and risk a complete blackout).

    On getting home.. I decided I'd best take my glucose level to see if it was low but couldnt get my fingers to bleed to do the test and noticed that my fingers were all wrinkly and indented like I was dehydrated. Something I shouldnt at all have been due to drinking about 5 cups of fluid per hr for the previous two hrs before.

    A couple of hrs after I recovered from the POTS attack and my fingers are all back to normal. Im assuming it couldnt have been "real" dehydration??? but maybe I had blood pooling in abdomen or somewhere and hence my fingers showed signs of dehydration??

    any one else got any ideas of how i could of been dehydrated when I drank that much??

    (im right now also trying to analyse my emotional reaction to the incident at the time.. I felt very very embarrassed and hence started to cry a little at the time about having to crawl to my new friends car.
    I would of thought I'd be okay to be seen to be crawling by another with ME/CFS so I cant work out why I was embarrassed to have to crawl in front of her? I cant make sense of why I was embarrassed to be seen having to do that?).
     
  2. Deatheye

    Deatheye Senior Member

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    If i understand you right you don't get it why it was emberessaing for you? I would say it would be more abnormal to not be emberessaed about something like that. Looks like pretty normal reaction.
    Not sure how you connection to that firend excatly is. But let's assume that you don't know ho to explain the problem to them, since you yourself are not sure what happened. You're propably used to it, like most of us, that people don't believe you and stuff like that... Looks perfectly normal to me to be less emeberrassed about wierd sympthoms around people that know and understand then people where you don't know how they react, you assume they won't understand anyway etc.

    bhaa sry my english is awfull at the moment.. brain shutdown pretty bad ^^'
     
  3. taniaaust1

    taniaaust1

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    Thanks. You've helped me to realise that I was being too hard on myself about it for being what I felt before was stupidly embarrassed.
    Im being more rational now with my thoughts about it. It was the very first time I'd been to that new friends house so that wouldnt have helped. (I cant even remember the last time I got to go to a friends house.. probably well over a year). And it was only the second time Id met that person in person... so I guess that would of added to the embarrassment too.

    Maybe I should get this post moved to the relationship section.... as Im now wondering how Im ever going to make new friends if things like that happen to me most times I try to visit. This has all added to my concerns of wanting to make new friends and the strugglings in doing so. The one I collapsed on.. it really worried her and she messaged me yet again this morning concerned (my collapse seems to have quite shocked her). So Im feeling uncomfortable knowing Ive given another with ME/CFS stress. Its like there is chaos every time I try to go out and have fun as my body lets me down causing then chaos and others to then stress out.

    (eg my partner will never take me to a parade again as when he took me to one a couple of years back.. I collapsed like I often do and nearly then got trampled in the crowd.. we were stuck and the police wouldnt help as due to my collapse, they thought I was a drug addict so ignored the situation when passersby tried to get help for me so went to the police for help.... anyway.. it often ends up as complete chaos when I try to go out).

    I so much want to make friends in my real life... make and build up some friends in real life.... right now due to others day situation which was the first chance Ive had to get to know someone more in Real life in a year, Im wondering how on earth to do it without causing chaos and the other person concern.
     
  4. Nielk

    Nielk

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    One of the most important part of our illness i knowing our limitations and staying within our envelop.
    It' very hard to do because it's a learning curve. You don't know if something i too much until you've tried it and crashed.
    It's a hard lesson learned. To complicate thing further, we are not static. We go through better and worse times. Our envelop changes accordingly. My doctor says, a a rule, do 50% of what you are capable of doing. How does one judge that.
    I personally prefer to err on the side of doing less. I've been burned o many times that it jut doesn't pay. For example for me to go to a rally is totally impossible. I wouldn't be able to stand or walk for more than 5 minutes. The crowd and the noise would give me a crushing headache. It's just an impossible situation for me. To go out to socialize is not in my envelop and I have accepted it.
    Maybe, next time it would be a better idea if your friend came to your house? Maybe next time you can just try to talk on the phone. Are you sure your collapsing was due to dehydration? If you have problems with glucose, you need to eat often - smaller meals. Maybe the problem was that you didn't eat for a while.
    I understand your need to make friends but it shouldn't be at the cost of your health.
     
  5. Gavman

    Gavman Senior Member

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    Other than the being fatigued factor, dehydration can occur from drinking too much water without enough electrolytes as the body doesn't absorb the water and this effects blood pressure too. I've heard a few specialist tell people to eat some healthy fat, eg. avocado/fish when drinking water. And salt can be helpful too. I'd say if someone has alot of weight due to fluid retention though that salt isn't a problem.

    Parades/concerts etc suck with cfs. I like myself a cafe, a house or somewhere low-key like a park to converse with people. Don't blame yourself for what your body is doing, thats another cycle that we can get stuck in. Practice letting the thoughts/feelings be there and letting them go. I'm so glad i got out of that cycle. I still get in the -IM WAY TIRED now time to look for more cures, what is wrong with me- phase though.
     
  6. taniaaust1

    taniaaust1

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    Phones are out for me as it is too much on my ME brain to be able to maintain my focus while on a phone, (I actually need to be looking at someone or my mind keeps shutting down and just cant hold my focus on a voice so kept on missing what they say.. its hard enough to maintain my focus even when I have them right in front of me).

    She visited at my place last time, the idea had been to take me over to her place for short while just to give me a change of scenery as as I said.. I never get to go out (expect to doctors or necessary shopping).

    I hate being held back by the ME, (I cant tollerate the noise of crowds either but IF I had a way to go, I'd still go to parades etc but just wear ear plugs and I need to be right at front so I have wind blowing on me (other I collapse in crowds due to the others body heat about me.. that is where my partner went wrong last time he tried to take me to one.. he wasnt listening to my needs and left to late and hence we then got stuck in thick of crowd..somewhere I just cant be). It takes a ton of planning for outings for me to be able to be anywhere (so much to take too.. I do take those ear plugs places with me, drink bottles, pain killers, a blanket so im not laying on concrete etc etc)

    I know Im probably half crazy going places I know my body isnt capable of and ending up hence in trouble much when I go out.. my other option is just not to go (an option I really dislike). I like to go out even if it means ambulance sometimes need to be rung... its better then always being stuck at home.

    my head and fingers were dehydrated.. but as I said I did drink 10 cups in 2 hrs before (I know how much I drank as I had to refill my drink bottle.. so it wasnt like any normal person would get dehydrated on.. I drank before the collapse what most people drink in a whole 24hrs). It would of been dehydration to my brain which caused the collapse.. my body wont hold its fluids so what I drink goes almost immediately out. I cant find a doctor to allow me to do daily saline IVs or to treat my POTS which causing that issue. Frustrating that the symptom which causes me the most issues isnt being treated and it could be. The POTS is as bad as my ME.

    Thank you anyway for your post Nielk.
     
  7. Carrigon

    Carrigon Senior Member

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    Put a quarter teaspoon of salt in the water and you'll notice a real difference. POTS is a disease of not enough salt. We NEED the salt, we are the opposite of people who have high blood pressure, even though we can read high. The thing is, we feel better when it's high. Just drinking fluid without salt makes you a thousand times worse because you are flushing out what little salt you already have in your body. You need to keep your pressure up. Just adding a pinch of salt to each glass of water can make all the difference in the world. But it should be real salt and not the junk table salt. Table salt just blows you up because it's not the real thing. Real salt is a balancer and will even it out in your blood and you won't feel so sick.
     
  8. taniaaust1

    taniaaust1

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    :) I love parks too. l just love to do all kinds of things if I could do them. Havent got to go to a parade in 2 years or so due to the disasterous last one.

    ummm I dont know if my salt was an issue or not. Sometimes my salt is okay but other times it is out of the normal range and low. I do tend to cover my meals with salt so try to keep it up. (its due to my salt issue probably why my bodies fluid volume can drastically change in just 24hr time periods, my body can vary in weight of 7kg in just a 24hr time period.. both my specialists said its cause at times my body suddenly decides to hold onto its fluid .. while much of the time it dont).

    :) @ Gavman. Right now im not in the "time to look for new cures mode". This week I decided to book myself a holiday from doctors for a month (they are tiring me out too much) so are on doctor holiday :) Yippeee doctor holiday time . (ive been working on my health hard and doing 2 appointments a week for months while attempting to sort out some of my health issues).
    My dietitan has set me a new 2 week diet plan so I'll just work on playing about with that while continuing to monitor what my blood sugar is doing.

    **thou the day I made that decision that I wouldnt have any appointments for month so I can rest from that, I ended up with a toothache, so now I think Im going to have to book another dentist appointment grrrrr what timing**
     
  9. taniaaust1

    taniaaust1

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    Thank you. I think I'll try that one next time I try to visit her and I'll take some salt with me.
    (I think we are going to take it in turns... she's probably crashed even more then I did but in her case after my visit as she ended up in bed for 2 days, she may be still there due to it as I know she was in bed yesterday too. (I only ended up in bed for one day after the visit.. thou it was my symptoms which had to cut the visit shorter then we wanted). Maybe I do need to take from spoon.

    Its interesting to see the different ways the illness manifests in people.

    can anyone tell me what "real salt" is??? It would still have chloride in it wouldnt it? (I have had abnormally high chloride reading but with abnormally low sodium..both those things happening at the same time .. If I purposely start taking salt from spoon rather then putting it just on my meals.. would this mean my chloride levels will go up higher?? if so.. can that cause issues???

    Would i have had low sodium due to peeing it out.. but does chloride not leave the body in the same way as sodium does if one is drinking a lot?

    That is why I havent tried taking salt from spoon as I dont know if that could cause issues for me.. so can someone more advise?). I guess I can try it anyway and just go by symptoms if it is doing me any harm or helping me. (Ive never noticed that salting my food and eatting high salt food helps.. never noticed any difference in the POTS). I do notice a difference thou, improvement IF i manage to drink enough to keep my fluid up (thou sometimes that is so high amount that its impossible).
     
  10. taniaaust1

    taniaaust1

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    I just been trying to find info on high chlorine levels. Apparently it can be caused by too high salt but it can also be caused by dehydration.

    I guess I probably dont have to worry about my salt going too high as I should pee that out (thou from what Ive just read the body is supposed to naturally pee excess chlorine too and one would think would be doing at the same time).

    So maybe my body was dehydrated due to low fluid volume.. causing high chlorine but cause i was drinking lots.. my salt was low at the same time? (I dont know if that could be correct or not).

    In that case I suppose that adding salt thou salt causes chlorine level to raise, wouldnt at all be bad as one is fixing the dehydration and its the dehydration which has made the chlorine high in first place. ***completely confused what it could do*** If one has high chloride at times, should one take salt?
    One of my blood tests shows my sodium being at 135 (the labs normal range is 136-146) and my chloride at 110 (labs normal range is 98-109)
    .................................

    "Hyperchloremia (High Chloride)
    What is hyperchloremia?

    Hyperchloremia is a high level of chloride in the blood. Chloride is an important electrolyte, and works to ensure that your body's metabolism is working correctly. Your kidneys control the levels of chloride in your blood. Therefore, when there is a disturbance in your blood chloride levels, it is often related to your kidneys. Chloride helps keep the acid and base balance in the body.

    What are some causes of hyperchloremia?

    Causes of hyperchloremia may include:

    Loss of body fluids from prolonged vomiting, diarrhea, sweating or high fever (dehydration).
    High levels of blood sodium.
    Kidney failure, or kidney disorders
    Diabetes insipidus or diabetic coma
    Drugs such as: androgens, corticosteroids, estrogens, and certain diuretics.


    What are some symptoms of hyperchloremia to look for?

    Many people do not notice any symptoms of hyperchloremia, unless they are experiencing very high or very low levels of chloride in their blood.
    Dehydration, fluid loss, or high levels of blood sodium may be noted.
    You may be experiencing other forms of fluid loss, such as diarrhea, or vomiting when suffering from hyperchloremia.
    You may be a diabetic, and have poor control over your blood sugar levels (they may be very high)."

    ....

    I wasnt taking any drugs at the time so it wasnt caused by that. My blood sugar dont go very high, Ive only ever had two high sugar readings and they werent hugely high (I get high insulin with low sugar) so it wasnt caused by that. I didnt have diarrhea or vomiting at the time. I wonder actually if I could have diabetes insipidus at times, I've wondered that for a long time.

    Confused at what im reading.. so high chloride can be caused by dehydration but it may also give one dehydration?? (as dehydration is listed in the symptoms to watch for. Maybe I was dehydrated in the first place due to chloride going too high?).
     
  11. ahimsa

    ahimsa Senior Member

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    suggestions for adding sodium and potassium

    My guess is that Carrigon meant something like sea salt without iodide but I hope she'll post with more details.

    I'm posting a short message to agree that getting some additional sodium (and also potassium?) is probably a good idea. Drinking a lot of water without any electrolytes can cause problems such as low sodium in the blood stream. This happened once with my father-in-law (he didn't have ME/CFS or POTS/NMH, he just had this particular problem of low sodium after drinking a lot of water).

    There are several ways to get extra sodium and potassium. I use salt tablets (check out Thermotabs or Bio-Salt brands) at every meal because I just don't like the taste of all that salt on my food. I doubt I'd like salty water much, either, so I have never tried adding plain salt to my water. But sometimes I use tablets like Nuun (can't think of any other brands right now) that are added to water to make a very mild flavored drink.

    As far as prescription drugs go, I'm on midodrine (ProAmatine) which is a vasoconstrictor and also fludrocortisone (Florinef), a prescription drug that helps the body hold on to sodium. I'm also on a prescription version of potassium that is time released (some generic version of Klor-Con). Sorry but I don't remember your specific issues with orthostatic intolerance so I don't know whether any of these drugs would be helpful for you. Still, I thought I'd post them just in case (and maybe someone else reading this thread will find it helpful).

    Anyway, I hope one of these suggestions is helpful!

    Edited - another suggestion is to try one of those sports drinks, such as Gatorade. I don't like the taste, and they have a lot of sugar, but some people get a lot of help from these.
     
  12. ahimsa

    ahimsa Senior Member

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    high chloride?

    I came back to edit my message and saw this message about high chloride. I have no idea whether adding sodium or potassium is advised.

    Best to check with a doctor if it is at all possible (can't remember whether you're one of the folks who can't find a good doctor).

    :hug: HUGS! :hug:
     
  13. taniaaust1

    taniaaust1

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    thank you

    ahimsa.. yeah im one of the folks who hasnt got a good doctor so goes a lot of this stuff alone. My doctor dont believe in the existance of POTS.

    I cant drink sports drinks due to my severe insulin issues which then can give me severe hypoglycemia. Im not allowed/able to take anything with sugar added into it.

    I get high BP at times (due to POTS) ..so there is no way my doctor who dont believe in POTS wouldnt allow me to have a drug like that. My ME/CFS specialists dont know about POTS either and hence wont look into that.

    Bad doctors leave me stuck with what i can try to help.
     
  14. ahimsa

    ahimsa Senior Member

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    home made sugar free sports drink

    Hi Tania,

    I understand about the sugar in sports drinks. I don't like them because I hate the taste. But, yeah, they are also bad for anyone with a sensitivity to sugar, whether that problem is diabetes or hypoglycemia.

    I do think that if you're having trouble with plain water then it is worth trying either salt tablets or a drink that has some sodium and potassium. I found this recipe online - maybe it will help?

    As long you don't have any problems with lemon juice this sounds pretty cheap and easy to do. It probably would be fine even without any of those artificial "flavorings" added.

    Another suggestion is to keep drinking mostly plain water but also drink something that has a lot of sodium and potassium. For example you could drink a small bottle of tomato juice or one of those veggie drinks (e.g., V-8). Both of these options have calories, of course, but no added sugar (only sugars from the veggies). Plus the fiber should slow down the absorption enough to prevent an insulin spike. But, again, this all depends on the individual.

    I wish you all the best... hope you find something that helps you a tiny bit.
     
  15. Valentijn

    Valentijn Activity Level: 3

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    Do they have V8 (tomato based "juice" with other veggies too) in Australia? I used to drink that. There's a ton of sodium, and a good bit of potassium too, and I think no added sugars. I remember it being 6 or 7 net carbs (carbs minus the fiber) per serving, so it was nice when I was doing low carb dieting.
     
  16. taniaaust1

    taniaaust1

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    I cant drink juices due to sugar (fructose) in them, I wasnt allowed to have tomatoes too for that reason (they are a fruit so I was on severe restrictions of that). My new dietitian thou my specialist has sent me too.. has me trying to reintroduce small amounts of tomato as she says I may be fine with that. have to see how I go (trying to reintroduce small amounts of potato, punkin and carrots was a big flop as my system reacted to their carbs).

    Fruit juices are still out (due to concentrated sugars when one juices).

    My whole daily quota is something like only 30g carbs for the whole days including all my meals. (Im on a far stricter diet with my issues then a diabetic diet.. I cant eat diabetic things as they trigger my insulin too much and hence low sugar). My meals I try to keep below 10g per meal. (55g can give me almost symptoms of insaniety due to the severity of the mood swing I'll get and I actually can start smashing things.. severely mentally affected by carbs even if they end up in my food accidently (that happened to me with a chickpea salad.. i didnt realise chickpeas were high in carbs) on top of some physical symptoms.
    I think my MCS makes me extremely sensitive to the high insulin issue I get. (this carb issue caused me to end up in jail).

    I do have a lemon powder stuff which is no carb.. so can make and do make drinks from that (I dont know if it has the same potassium amount in it as lemon juice). Recently managed to get an extremely low carb orange powder (less then 1g) but for some weird reason its making me even thirsty. (Im almost completely out of it and its hard to get so it could be weeks till i can get some more.. took me 9mths to get the first lot but they are starting to sell it in Australia now more). They dont seen to have the same benefit thou on my POTS as the sports drinks used to have.
     

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