1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Feel Very Bad After Resting, Getting Up from Sitting plus Eating

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Willhm, Aug 22, 2013.

  1. Willhm

    Willhm

    Messages:
    77
    Likes:
    14
    Hello,

    I realise now I can feel a LOT worse when I have been lying down and especially feel it after standing up, same for sitting then getting up and sometimes also with eating (stomach feels a lot worse afterwards too, for all these things), I feel much more tired, feel more sick and just heavy and not as focused, more so than normal, sometimes by a big amount.

    It is interesting because I realise in the recent past when I had to get out of bed at night to use the bathroom I got back to bed and stomach felt worse and I probably felt more worn out, how I have to use a container as I just feel so bad getting up at night.

    My blood pressure reading is normally around the 100 (low side of normal) mark for the top reading, in the 50s for second (so a bit low) and pulse is around 60s (low side of normal) but I think I remember reading on here on another thread (maybe even one I started) it could have something to do with with blood or heart or oxidative stress which I don't know what that is and can you get a finger thing to check some readings like you can with blood pressure.

    In the last couple of weeks plus a day or two we have rented a wheelchair and I have gone out in it a few times and when I get out because the road is too steep to push me onto (so I'm out only for a few seconds) or when I actually get out at the end when I'm at home and I feel so much more tired and worse after getting out the wheelchair and I actually had to stop after four days in the wheelchair as it caused such a big crash afterwards.

    Does anyone else experience this or knew what it is or what one can do? I have started to think me even standing up is causing problems or going up the stairs and it would be easier to be wheelchair bound for the most part and just getting up when nesercary, like going upstairs to bed, and maybe if I spent more time in a wheelchair just at home then I could be in a wheelchair out and about, the time I crashed I was out for 45 minutes but sitting the whole time bar a few seconds when I had to get out.

    Thanks.
  2. Willhm

    Willhm

    Messages:
    77
    Likes:
    14
    Also I should add when I wake up n morning I don't get straight out of bed, I probably stay for up to 45 minutes and the other day I did get up quickly after waking I did feel more hazy etc.
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,295
    Likes:
    6,282
    USA
    @Willhm~
    That sounds a lot like POTS and/or low blood volume. A cardiologist or electrophysiologist can probably help. If you're in a place that has an autonomic specialist, that might be even better.

    You can check the ME/CFS Primer for Clinical Practioners for more information. Here's an excerpt to get you started:
    Management of Related Conditions

    ahimsa and Valentijn like this.
  4. Willhm

    Willhm

    Messages:
    77
    Likes:
    14
    Thanks for all the information, it looks very useful and I will try and delve into it a bit deeper. Is it worth me getting one of the finger things or heart rate/oxygen in blood or does that not measure anything linked with this? Also you mentioned low blood volume, do you know how I would get tested for that? Would these things just require a blood test?
  5. SOC

    SOC Moderator and Senior Member

    Messages:
    5,295
    Likes:
    6,282
    USA
    The best thing to do would be to describe your symptoms as you did above to your primary care physician and ask for a referral to an autonomic specialist. Depending on what's available locally, you might get referred to a cardiologist instead. The most likely first test you will get is a tilt table test, however, some specialists will save you the trouble (it's not a fun test) if your symptoms are clear enough and go straight to trying meds and behavioral changes (fluid loading, electrolytes, exercises, etc).

    There is an informative article about orthostatic intolerance (OI) here at PR. About halfway down the page there's a link to "A Simple Test for OI" which you can try at home. DO NOT try this on your own as it's possible you will collapse or pass out and could hurt yourself. Get a friend or family member to stand by to catch you just in case.

    The simple test is not definitive, but it can give you an idea of what you're dealing with. It's also useful data to take to your doctor when you ask for a referral.

    Generally speaking, doctors don't test for low blood volume, although I understand it's possible. It's probably a cost thing. :rolleyes: They can diagnose based on symptoms and whether relatively simple treatments help.

    Different types of OI need different treatments, so people here at PR can't tell you what is likely to work for you. Once you know more about your OI status, you might get some feedback about what has worked for other people with that form of OI.
    ahimsa likes this.
  6. Willhm

    Willhm

    Messages:
    77
    Likes:
    14
    Thanks for all this information, we are going to rent for a week a self propelling wheelchair just so I can find it easier around the house because at the moment I have to get up a lot to get food because I eat very little and often and just even going to the bathroom or room to room etc, it might be too much of a hassle and could be too tiring due to the fact I have to use my arms but I read an article from I suppose what was a study saying how there is a link between upper gastrointestinal problems and OI and I have big problems with my gastrointestinal goings on and a lot of food problems, nausea etc so I thought might as well give it a go. Also having more salt now, will try and have more water and see what else there is along side avoiding the harder things (I have a lot of problems with heat, hot food, showers, weather etc which links in with what I read, also exhaustion after eating). It just all seems to fit in largely with what I experience. But it does mention not sitting all day, do you have any idea how you are supposed to sit and how you are supposed to spend your time not sitting? Lying down for me is little good due to stomach problems and standing makes me feel ill. Anyway I hope I will see some difference and post if there is much change, not sure when renting the wheelchair but probably soon and just for a week so should have information soon,

    Thanks for all your help.
  7. Willhm

    Willhm

    Messages:
    77
    Likes:
    14
    Just re read your post and I can see that different cases of OI are different so sitting position, how long to stand etc differ case by case. Either way I will try this being a wheelchair around the house to little getting up and walking around and I hope to post if there has been any improvement.
  8. SOC

    SOC Moderator and Senior Member

    Messages:
    5,295
    Likes:
    6,282
    USA
    You'll probably need to get your blood volume up before you can stand much. That may take more than a bit more salt and water. There are some exercises you can do lying down that can minimize blood pooling, but pooling may not be a problem for you. You really should see an autonomic specialist or a cardiologist. They could have you feeling a lot better within a couple of weeks. It's worth trying, surely?
    ahimsa likes this.
  9. triffid113

    triffid113 Day of the Square Peg

    Messages:
    702
    Likes:
    223
    Michigan
    Yes, I was going to say POTS and low blood volume too. I experience the low blood volume quite a bit and while it initially lowers your blood pressure, it can also raise it. I was approaching it from a high blood pressure for no known reason and no urinary output problem. It took 3 pints of water little by little in the evening and 3 pints of water little by little the next day to get my bp back to normal. You cannot digest food when you are dehydrated which is why your stomach feels weird after eating. For me it also caused water retention and inability to urinate, which is why I had to rehydrate slowly as my poorly functioning kidneys would pass the water - so as not to blow them out). (I also take cal-mag when I rehydrate and C...from long experience of dehydrating from caffeine consumption as I used to drink 20 cups of coffee a day to keep ging with constant anemia...I always figured coffee caused mineral loss so I replaced 400-600mg of calcium citrate and magnesium citrate). Here is what I find on a nurse (RN) website:

    http://www.lisanelsonrd.com/blog/high-blood-pressure-and-dehydration

    High Blood Pressure and Dehydration

    When you think about water and blood pressure the link between dehydration and low blood pressure probably comes to mind. Dehydration is a potential cause of low blood pressure due to resulting decreased blood volume leading to reduced pressure against artery walls.

    However, did you know not drinking enough water can lead to high blood pressure?

    When you do not drink adequate water the body will compensate by retaining sodium. That should be a red flag. Sodium is directly related to high blood pressure.

    While this sodium retention takes place, the persistent dehydration will lead the body to gradually ‘close’ some of the capillary beds. This leads to increased pressure places on arteries and a rise in blood pressure.

    More explanation here:

    http://www.buzzle.com/articles/dehydration-and-blood-pressure.html


    During dehydration the water levels drop drastically, but the body still needs water for various functions. In this case the essential organs in the body will be given priority for water, whereas the capillaries that supply nutrients to your skin and muscles, are closed. Moreover during dehydration, the water is drawn from the blood to meet the required needs of the essential functions. This lowers the blood volume, in the arteries and veins, which ideally need to be full. Now once this blood is transported to the organs, the blood vessels contract, to keep up with the available volume of blood. A hormone like substance called histamine is produced, which causes the narrowing of the blood vessels. This contraction can cause tension in the blood vessels, which will increase the blood pressure.
    Another interesting fact is that, once the blood vessels get filled with little blood, they will lead to low blood volume to the arteries, which will eventually reduce the pressure of blood, and result in low blood pressure. Low blood pressure due to dehydration can also be caused due to prolonged high blood pressure. When the body suffers from loss of water the capillaries and blood vessels get contracted, this causes fatigue and weakness in the blood vessels. They will not be filled with blood adequately and eventually cause low blood pressure. Medication for high blood pressure can also lead to low blood pressure, while some are safe considering dehydration like water pills for high blood pressure, but most of the other medicines are diuretics, beta blockers, calcium channel blockers, that will deplete water levels and cause a drop in blood pressure again. So we can draw a conclusion that dehydration can cause, low as well as high blood pressure.


    And I find the tie to POTS here:




    http://www.healthcentral.com/ency/408/000982sym.html?ic=2601

    Dehydration Symptoms

    • Dry or sticky mouth
    • Low or no urine output; concentrated urine appears dark yellow
    • Not producing tears
    • Sunken eyes
    • Markedly sunken fontanelles (the soft spot on the top of the head) in an infant
    • Lethargic or comatose (with severe dehydration)
    In addition to the symptoms of actual dehydration, you may also have vomiting, diarrhea, or the feeling that you "can't keep anything down," all of which could be causing the dehydration.


    Signs and tests

    A physical examination may also show signs of:

    • Low blood pressure
    • Blood pressure that drops when you go from lying down to standing (this is POTS)
    • Rapid heart rate
    • Poor skin turgor -- the skin may lack its normal elasticity and sag back into position slowly when pinched up into a fold by the doctor; normally, skin springs right back into position
    • Delayed capillary refill
    • Shock
    rosie26 likes this.
  10. triffid113

    triffid113 Day of the Square Peg

    Messages:
    702
    Likes:
    223
    Michigan
    What I don't get is why I don't get thirsty enough to avoid dehydration. This only happens to me during allergy season so I guess my body is so messed up it doesn't know what it's doing anymore. I hear as you get older your thirst mechanism doesn't work so well anymore. Not sure if I'm at that point or if it's allergies confusing the picture.
    rosie26 likes this.
  11. SOC

    SOC Moderator and Senior Member

    Messages:
    5,295
    Likes:
    6,282
    USA
    In my case, I think I've been constantly thirsty for so long that I tune out the thirst signal. Now that I've been deliberately drinking the right amount for my body (a lot), I notice the thirst signal more, but I still have to think about it, "Am I thirsty? Oh, I am!"
  12. triffid113

    triffid113 Day of the Square Peg

    Messages:
    702
    Likes:
    223
    Michigan
    Yes...I tend to respond to thirst with a cup of coffee also. I know a guy who used to get a lot of backaches. His doctor told him to drink 8 (or was it 10?) cups of water a day and if he drank coffee (caffeinated beverage) it counted as -1. When he followed that he never had a backache again. He told me that at his retirement party. So, yes, I have to retrain the thirst thing. I am sure it is dehydration which causes my kidneys to slow. But the next day, even dehydrated (I did not drink as much water as I should) my bp was down and I think - voila! - allergy season is over so that was the MAJOR reason my bp was up. I find studies which show that HISTAMINE is a cause of high blood pressure.

    So I am going to try to desensitize by eating allergens in small quantities. (It never worked by injection but I understand it has been proven to work by ingestion). So they proved that chicken soup would train the body to not have an immune reaction to little bits of collagen from the joints, even in those w/o arthritis, who get bits of collagen in their blood stream by exercise. So now they have developed a product called UC-II which delivers undenatured collagen by pill. It takes 3 months to retrain your immune system. I ordered it against joint pain caused histamine and high bp. I remember reading that the American Indians were not allergic to poison ivy and in fact ate it (aha! prolly the Reason they were not allergic). I am allergic to cats and yet I have 6 cats and "got used to them". Now I wonder if perhaps because they sleep with me I end up ingesting bits of their hair (yuck!). And then I remember conventional "wisdom" warning those of us with hayfever to avoid certain teas related to ragweed "just in case" when in fact it might be better to drink them! Well I have to try something regarding my allergies and it has proven to work, at least in others, so worth a try. Otherwise my allergies really will kill me via blood pressure.

    I am not saying dehydration did not play a significant role. But so did histamine. And that's MUCH harder to fix.
  13. triffid113

    triffid113 Day of the Square Peg

    Messages:
    702
    Likes:
    223
    Michigan
    Oh, sorry - I thought I was in another thread - the one on blood pressure. Dehydration causes me to not be able to digest food, and my kidneys to slow down (so I have to get up at night to pee), and at least once in hot weather not during allergy season I saw that it caused raised blood pressure in me. I cannot be sure THIS time how much of my raised bp was due to dehydration and how much due to histamine because I started drinking extra water pretty much the same time allergy season ended (it was a short season in Michigan this year due to weird weather). I hope my blood pressure sleuthing does not detract from this discussion on dehydration and POTS (sorry!)

See more popular forum discussions.

Share This Page