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!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
Discuss the article on the Forums.

what causes hypoperfusion?

Discussion in 'General ME/CFS Discussion' started by Aerose91, Mar 1, 2014.

  1. Aerose91

    Aerose91 Senior Member

    Messages:
    569
    Likes:
    241
    Every time i have a PEM setback i get increased hypoperfusion in either my muscles or various organs, most times the effects have not reversed. What causes this?
    Allyson likes this.
  2. alex3619

    alex3619 Senior Member

    Messages:
    7,033
    Likes:
    10,823
    Logan, Queensland, Australia
    Short answer: nobody knows. Long answer: there are many hypotheses about this. Perfusion is controlled by a balance of vasoconstrictive and vasodilatory factors. We just don't know enough yet. Its possible that the body is reacting to the energy crash and trying to protect itself by shutting down blood flow to less important areas. This would probably be controlled by the brain, if its the case. As yet it only remains speculation. In any case there would be too much vasoconstriction, and not enough vasodilation, and this can be further affected by low flexibility in red blood cells, or excessive clotting, if these are present.

    One possible confounding factor is lactic acid. I have still to fully investigate what this might do given our highly abnormal physiology. I suspect, again, we still don't known enough.

    Do you have any OI, such as POTS? Do you have fibro? Both of these change the possible range of answers.

    PS Low blood volume is another issue that affects this.
    Last edited: Mar 2, 2014
    ahimsa and merylg like this.
  3. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,621
    Likes:
    1,253
    Florida
    My hypoperfusion is from oi and the effects are reversed everytime i lay down for an hour plus. I feel the muscles relax after I've been down that long. My hr normalizes too.

    I'm not familiar with pwcs getting steadily worse from pem or hypoperfusion. Not to worry you but have you been evaluated for other illnesses. Maybe ms?

    I became ill with cfs in 1990 after a virus caused chronic congestion. Fwiw, I may have been given flouroquinolones and those did me in. Not a mystery virus.

    Since changing my diet in 2005, I heal from injuries much faster. But I'm a celiac who was eating gluten all the time so my body didn't have the strength to heal. Imho, Elisabeth Hasselbeck's story demonstrates this easily.

    My health has improved dramatically in recent years just not the oi, pem or hypoglycemia or possible cfs bug?

    Tc ... x
    Last edited: Mar 2, 2014
    peggy-sue likes this.
  4. anciendaze

    anciendaze Senior Member

    Messages:
    859
    Likes:
    887
    Just want to add something to what Alex said above. Part of the problem with autonomic dysfunction is that we are dealing with more than one nervous system. There is such a large nervous system in and around the gut that it has been called a second brain. There have been cases in the past when doctors thought the brain was controlling things like excessive secretion of stomach acid, and severed the link between the CNS and this nervous system (vagotomy). The patient's guts continued to digest food just fine.

    One reason this second system might consider the brain a secondary system it can dispense with in a crisis is that the brain came later in evolution. Endocrine systems came first, followed by nerves in the gut, some myelinated, some not. Immune systems have been interacting with all of these from about day one. The brain itself was actually formed in three major stages, which have left anatomical distinctions between structures. Your conscious brain is about 5th or 6th in this stack of control systems. A lot goes on below its notice and outside its control.
    Sushi, SOC, NK17 and 1 other person like this.
  5. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    The lymphatic system has also been, fairly recently, likened to a mobile brain.:)
  6. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,621
    Likes:
    1,253
    Florida
    This is why it's so important to thoroughly massage your iphone everyday.
    Allyson and Tito like this.
  7. Aerose91

    Aerose91 Senior Member

    Messages:
    569
    Likes:
    241

    The effects of PEM go away for you if you lay down for an hour? Laying down does nothing for me, i have massive hypoperfusion in my brain and over the period of a year nothing has made it budge at all. What i can tell you with 100% certainty is that post over exertion my brain function has declined dramatically and once there it doesnt budge. The only thing i can do is rest which will prevent it from getting worse quickly.

    Yea ive been checled for MS and all the other things and their all negative. Dr Enlander says im "classic" M.E. However, ive been seeing another doctor as well, Dr Zabrecky in Connecticut and he theorizes that i have hypoperfusion in all of my organs. He bases this on tests ive had showing that i have cell membrane damage, not sure what the treatment would be though.
  8. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,621
    Likes:
    1,253
    Florida
    Sorry to hear that you're not recovering from hypoperfusion or pem. I didn't recover from hypoperfusion, NOT PEM, either until about 3 years post dietary intervention. Mostly gluten elimination for me tho.

    It took me awhile to realize that I was feeling healthy IF I laid supine for typically an hour straight. I wasn't the kind of person who sat or laid down long enough to figure this out.

    I disn't know my body was recovering from hypoperfusion until I did my own pmttt and saw my hr take a 15 pt drop AFTER I was down for 45 minutes. My lungs relax next. Then the pressure in my head stops.

    I'm actually started experimenting with avoiding pem recently. I'm still working on this tho.

    Have you seen an integrative, functional or natural physician? They run different tests than most doctors.

    Good to hear you're negative for ms. I actually had lesions on my brain and ataxia so I may have to look further at ms myself.

    Tc ... x
    Last edited: Mar 2, 2014
  9. Aerose91

    Aerose91 Senior Member

    Messages:
    569
    Likes:
    241
    Ive been seeing Dr Enlander for almost a year now as well as another intevrative practitioner just for another opinion. No help though, i continue to decline.
    My doet is.phenominao and has beem for years before.i even got ME. Im getting very worried now because of the rate im declining- theres very noticabke changes daily. Since this massive hypoglycaemic problem has arisen i have terrible weakness and OI that blindsided me out of no where. last week i could walk just fine, now i cant even sit up, i have to crawl to even go to the bathroom and i and still declining- nithing is stopping this. I have no idea what to do.
  10. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,621
    Likes:
    1,253
    Florida
    Have you considered going to an ER or an urgent care center ? Your symptoms sound like they warrant it to me.

    They can look for things that are only thete when you're feeling puny.
    Last edited: Mar 3, 2014
  11. Aerose91

    Aerose91 Senior Member

    Messages:
    569
    Likes:
    241
    I actually did that last week for that exact reason. They did the basic blood panel and also looked for diabetes and basic liver/pancreas function. Everything came back ok except for hypoglycaemia. Thats good but sucks also because i know the M.E. is causing some malfunction somewhere i just dont know how to find it. Hopefully dr E can do some blood work or something

    Thank you for the help
  12. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    669
    Australia, Melbourne

    Have you had your blood volume tested Aerose?
    I had it done and mine was very low - it is discussed in detain in another thread somewhere on this forum


    ALly
  13. Aerose91

    Aerose91 Senior Member

    Messages:
    569
    Likes:
    241
    To the best of my knowledge i havent. How do i go about doing this?
    Allyson likes this.
  14. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    669
    Australia, Melbourne
    @xchocoholic
    Umm...... I posted a long thread on it here some time ago but do not know where it is now

    LOW blood volume testing is explained in the 3rd post in this link though...

    as mine is related to or caused by Ehlers-Danlos Syndrome (EDS) it seems


    http://forum.notcrazy.net/index.php?topic=9571.0

    Ally
    Last edited: Mar 6, 2014
    xchocoholic likes this.
  15. Graeme

    Graeme almost there...

    Messages:
    354
    Likes:
    219
    Montreal
    KDM has suggested LDN causes dilation of small blood vessels and constriction of larger ones. I'm not sure if this is true but it may be worth a try.

    I've found a couple things to better cerebral perfusion: ginkgo, garlic, and baking soda. The first two are vasodilators. Ginkgo apparently works specifically on the brain. I don't know how this can be but it does seem to do the job. To anyone trying this, titrate up slowly or you might find yourself with a killer headache. The baking soda works by alkalizing things. I believe there's actual swelling in vessels that sodium bicarbonate can limit. I think Shoemaker's work suggests there is a sort of inflammation that chokes off oxygen delivery and that this explains much of the disease, from fibromyalgia to cognitive deficits to GI problems, etc.
    xchocoholic likes this.
  16. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,621
    Likes:
    1,253
    Florida
    Hi @Allyson,

    I took a peek at your notcrazy thread. I don't appear to have eds. I'm not hypermobile.

    Since 2008 or 2010, can't remember now, I recover completely within 60-75 minutes of laying down flat. Getting up sooner doesn't give my body time to recover. This is why pacing never worked for me.

    The downside is that my oi symptoms start up again as soon as I'm upright. I can stand up to cook or do dishes but it makes me feel horrible. Moving helps but moving constantly in public is embarrassing.

    Compression garments helped a little but made me too uncomfortable.

    I'm looking at exercise to make my body pump blood more effectively. I recently pushed myself for a month straight by using caffeine pills and notice I'm not nearly as weak as I was. :)

    While in PT recently I noticed that I can exercise much easier when laying down.
    So I'll be trying that. Walking seemed to help to tho. After 24 years of being disabled with cfs, 16 1/2 years of that with ataxia, I'm not expecting to run any marathons. :)

    Tc .. x
    Allyson likes this.
  17. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    669
    Australia, Melbourne
    Good luck with the exercise xchoc;
    you do NOT meed to be hypermobile now they think to have EDS though

    Many EDSers are stiff in joints and muscles rather than HM

    I find even light compression helps - in fact light is better - I just wear footless leggings
    but firm pressure - elasticy - around the abdo is good when you are up to prevent the abdominal pooling

    you might find aqua is good too - supports and squeezes ad you exercise - I always sleep well after an aqua class in the evening
    Good luck

    best

    Ally
    xchocoholic likes this.
  18. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,621
    Likes:
    1,253
    Florida
    Thanks. I guess I need to look closer at EDS.

    I couldn't tolerate the compression around my abdomen. Any pressure on my belly is painful if I'm upright. Esp sitting. If I'm ever in a car accident where I get thrown from the car, my pants will be found in my seat. :)

    Tc .. x
    Allyson likes this.

See more popular forum discussions.

Share This Page