low cardiac output and m.e

Discussion in 'Fibromyalgia Main Forum' started by suzi123, Mar 12, 2013.

  1. suzi123

    suzi123 New Member

    I've read about m.e and how we have low cardiac output this is why we have the symptoms of dizziness etc etc I read that some say m.e is a mild form of heart failure, this worries me, and they said this is why we feel better lying down, the actual m.e CFS protects us from full heart failure and when we stand the heart doesn't pump enough blood the blood volume is 5 lying down then 3 standing up when it should go up standing.

    This worries me because I am bed bound I want to get up and about but when I stand feel dizzy and like I'll collapse sometimes my legs give way, how do I then get out of the vicious circle lying in bed if I feel better lying down but then never get up surely that will make my bp worse over time and increase dizziness?

    Do I push through it and stand more and more or just lie in bed?

    I did a test today and checked my bp lying down it was good I was surprised - 116/72 72bpm then 15 mins later checked it as I stood up I was surprised and pleased to see it was 127/87 88bpm I felt dizzy though?

    Mind you I hadn't eaten lunch or any meal which can affect it

    Then I walked to the next room and kept standing for about 10 mins I was really dizzy and I found it had dropped to 109/88 90bpm still good bp, but the top one did drop.

    So I wonder what this means? Do I have orthostatic hypotension or not cos it wasn't technically low?

    And obviously on walking my bp does drop, why? And this is why I cannot sustain walking around

    I wonder if It would go any lower if I continued to walk around

    My aim is to get out of being bed bound but I can't get through the dizziness, exhaustion and unsteady on feet

    I would appreciate any thoughts or advice thanks

    [This Message was Edited on 03/12/2013]
  2. mbofov

    mbofov Active Member

    It sounds like a form of orthostatic hypotension to me, but I don't know much about it. Hopefully someone who knows more will weigh in on this.

    I'm just wondering if perhaps your adrenals might also be weak, which would contribute to your weakness and dizziness upon standing. When my adrenals were wiped out, I was weak as a kitten. I think I have a mild form of orthostatic hypotension as well, but the adrenals were what really kept me basically bedridden.

    I do better walking, than standing. If I have to stand for 10 minutes in a grocery, I start to get nervous, it just doesn't feel right to me. But if I'm able to move, I generally do better.

    My chiropractor who does muscle testing is the one who first found my weak adrenals. He gave me an adrenal glandular supplement by Standard PRocess called Drenatrophin PMG. I had to take about 3 times the recommended dose for a couple of weeks I think, but within a couple of days my energy started to pick. It felt like a miracle to me. Then I learned all about adrenals and how stress, caffeine, sugar and alcohol are all so bad, but my chief problem was severe stress and I had to figure out how to deal wtih it. Meditation was one very useful tool. I've taken adrenal glandulars off and on ever since as my adrenals tend to be my achilles heel. Also pantothenic acid is very good for the adrenals. It's one of the B vitamins.

  3. harrysmom

    harrysmom Member

    I know what you are experiencing is really hard and scary. I have had CFS for almost 17 years now and for years in the beginnning when I was at my worst I couldn't walk from the bedroom to the bathroom or kitchen without feeling dizzy...that dizziness and light headedness after standing very long were some of my worst symptoms. I don't pretend to have all the answers, everyone is different, but I will tell you what helped me over the years.

    After years of laying prone in bed or on the couch in the living room I made a vow that I would make some progress so I bought a nice recliner. That way, I could sit up and when I had to lay back the recliner could do that, too. It was a milestone for me not to spend the whole day laying down. Then, I realized that in order to feel stable I had to eat something every 3 or 4 hours or the weakness and lightheadedness would come on. I made sure I drank lots of water, took some vitamins, and made sure I had enough salt in my diet.

    Then after a few years I started a schedule where I would get out of bed, rest in the recliner and sometimes the couch, but get up for short periods, even if I was dizzy, and accomplish one thing a day, even if I had to rest in between parts of the activity. One day it could be doing one or two loads of laundry. Another day it could be taking a shower and doing my hair. Maybe one day cooking something different, or changing my sheets. I have found after years of doing this that I can do more now and feel better and stronger, but you have to get out of bed and move....don't push yourself to the point where you feel real strange and feel like collapsing. Stop way before that. But, move, at all costs. Your strength will waste away and you will get so weak if you don't try to move around the house and this disease goes on year after year and without some movement and circulation you will just deteriorate. Start small...and try to get up to do something at the time of day you feel the best. Mornings are terrible for me....I feel stronger later in the day.

    Just wanted to share my experience and hope it gets you thinking.

  4. ellikers

    ellikers New Member

    it's possible some folks with CFS/ME have low cardiac output, but that's certainly not the case for the majority of folks, and it isn't part of the diagnosis. it is NOT a mild form of heart failure. Where did you get that information?

    What you are describing sounds a lot like orthostatic hypotension (low blood pressure upon standing). It can be related to CFS, adrenal fatigue, etc.

    Lightheadedness can have a number of different causes that influence blood pressure and conditions, and being less active (as many folks with CFS are because of pain and issues with exercise) can have a lot to do with that.

    If you want to get more active, start very very gradually ... sit up out of bed, wait for a while breathing calmly, then get up. Whatever your activity limit is, start there and try to increase gradually, by about 10-15% or so (if you can walk a lap around a room, do that; next time, increase the lap slightly, etc.).

    Folks with CFS, chronic pain and other related conditions do a lot better if they are able to be as active as possible and that doesn't mean running a marathon, it means being as active within the limits as possible. Slow changes can increase people's abilities a lot.

  5. mbofov

    mbofov Active Member

    First, like Suzi, I have read several places that people with CFS tend to have low blood volume. This can be a direct contributor to orthostatic hypotension. The link I provide below from the Cleveland Clinic states that low blood volume is a very common cause of OH and gives very practical and easy suggestions for increasing blood volume. One suggestion is to just drink two 8 oz. glasses of cold water before something like going shopping.

    Also, my doctor believes that CFS involves an atypical form of heart failure, demonstrated by abnormal impedance cardiography results which measure vascular resistance (the test is performed using a BioZ machine in a cardiologist's office - my results were very abnormal). Arnold Peckerman has produced a paper correlating the severity of CFS symptoms with impedance cardiography abnormalities. So I think Suzi is correct on both of these points about low blood volume and heart failure.

    And yes, OH can be linked to adrenal problems which are ubiquitous with CFS, so the adrenals should be addressed too.

    Anyways, here's the link to the article. I learned a lot and it also explains why the above posters who recommend adding electrolytes are absolutely correct. Salt and potassium are both necessary:


  6. ellikers

    ellikers New Member

    I think CFS and Fibro are very large categories, there could in fact be several different types of dysfunction at the root of many people's diagnoses. We're talking about really complicated interactions between many systems in the body ... blood pressure, central nervous system control, adrenals, electrolyte balance ... they all interact and are interconnected for sure.

    I just want to point out that lumping everyone with CFS as having an atypical form of heart failure seems overly simplistic, and ignores everyone who doesn't have cardiovascular abnormalities with these DDs. Again, many people could have atypical blood volumes, orthostatic hypotension, etc.- I'm not discounting evidence of folks with these DDs AND cardiovascular abnormalities, just that not everyone does.

    I'm not trying to argue, just discuss and understand.

    From my understanding orthostatic hypotension has a lot to do with neurological control of the vessels than blood volume (you can have acceptable blood volume, but when you get up, controls in your body shift to let blood drop and pool towards lower extremities). For example, people with needle/blood phobia can have fine blood volumes and pressure, but if their nervous system "freaks out," blood pressure drops as blood pools towards feet and voila, fainting can ensue.