Feels like my heart isn't pumping blood. Anyone else had this problem?

Discussion in 'Fibromyalgia Main Forum' started by sunnyslumber, Aug 16, 2009.

  1. sunnyslumber

    sunnyslumber New Member

    Hi Everyone,


    First thanks to everyone who responded to my other thread. I was feeling so down and out but now even though I still am in some kind of relapse my spirits are a bit better =). One of the things that I notice immediately when I relapse is it *feels extremely* like my heart is not pumping blood, not only is there sometimes some physical pain in that location but also there are symptoms like tingling in extremities, dizzyness, weakness in extremeties.

    It helps a lot to lie down during these times (I think this is pretty common in "CFS" since the term "Horizontal Life" vs. "Vertical Life" is used a lot). Probably because the heart doesn't have to work against gravity. Anyways, during times like this, my whole body feels if it is suffocating or whithering or only existing as a painful remininder... without any abilities or strength to do anything. The problem must have something to do with my heart because this is where the pain starts, often it goes in my left arm--as expected with something wrong with the heart. The lightheadness is also what you would expect from the heart somehow underperforming. Unfortunately all my tests haven't found any problem.

    So I was wondering, have you had something like this symptom? How did you cope? Did you have a treatment that worked or helped alleviate it? Please share!


    john duncan
  2. AuntTammie

    AuntTammie New Member

    There are a few doctors who have found heart abnormalities in many ME/CFS patients....Dr Cheney and Dr Myhill are two who have published some interesting stuff about this (sorry I don't have the links quickly available to put here, but if you look on Dr Myhill's site, you should be able to find her's, and Dr Cheney's shouldn't be too hard to find either)

    Anyway, their research has shown something called diastolic cardiomyopathy. Unfortunately, there are not many doctors who are versed in finding this and it doesn't show up in the commonly used heart tests. I haven't really read much about anything that can be done for it, either. Your symptoms could be from that. Shortness of breath and chest pain are two other symptoms that usually go along with it, too, though.

    There are many other things that can cause similar symptoms, though, so if you haven't had this checked out, you probably should. Some of the other things it could be are serious and some aren't, but it's not a good idea to ignore the symptoms, if they are new and have not been checked.
  3. RunningAntelope

    RunningAntelope New Member

    Heart symptoms are nothing new to CFIDS patients. Cardiomyopathy is ultimately what became my major downfall, and, while I was diagnosed by famed EBV and now CDC doc James Jones with "neurally mediated hypotension," I had little success treating it with medicines designed to raise blood pressure (though my wife did). I consulted with two separate cardiologists in Colorado, one of them an electrophysiologist, and neither of them could make a diagnoses, much less bring relief. It's not until I consulted Dr. Cheney at the Cheney Clinic in NC that I began my path to recovery. I sought him out specifically because of his proclivity towards diastolic dysfunction and his use of an extremely high-end, sensitive echocardiographic technique to diagnose not only the illness itself but the degree of illness. In short (I'm simplifying it), CFIDS patients have a "filling" (diastole) problem related to either an energy deficit or an inefficiency in utilizing said energy. All parameters of my heart are vastly improved, not the least of which is isovolumetric relaxation time (IVRT) and cardiac output.

    Cheney gave a presentation back in April in Virginia I believe, and I think you can purchase a DVD. You can search by my my user name for more info that I've posted previously, but the modalities that seemed to help me the most were hawthorne, magnesium/taurine shots, hydroxy-B12 shots, and, perhaps most significantly, his bison-derived cell signaling factors (initially it was nexavir). I still have neurocognitive difficulties, and I refrain from posting here too often, because I want to not only be able to report a "functional" cure but that it "sticks," and some of his information is proprietary. Cheney has lifted my KPS score some 15 points+ based on my own subjective analysis, which is life-changing as you may well know. In my mind, he has the most elegant model out there that I've ever seen for CFIDS, and he covers "all of the bases," including potential pathogens, immunoregulation, gut dysbiosis, neuroprotection, and speaks very convincingly of how many of the treatment approaches bandied about in the CFIDS universe may quite possibly be undermining the body over the long haul (many of the downregulated systems are compensatory, "defense" strategies used by the body for a very good reason).

    He has a website, but I am not promoting him, only speaking from profound personal experience. I had originally sought out Dr. Lerner in Michigan who seems to think this illness is a viral-cardiomyopathy, but I felt that his approach would only work for someone in the early "infectious" part of the disease from personal intuition. It may be as simple as taking something for low blood pressure and wearing compression socks, and I've heard of people taking salt tablets with success, but it didn't work for me.
  4. sunnyslumber

    sunnyslumber New Member

    Thank-you guys for responding and posting what worked for you. I have two questions, ... can you give me something like a percent --i.e. it is only 75% as bad as it used to be -- or some other indicator (loss of some other symptom: no longer light headed). I have tried some medication in the past for orthostatic hypotension (even had a title table test- but compared to my symptoms the results were underwhelming) without a lot of success (started with an M, though I don't remember the name).

    However whenever I am at home I have it really bad, maybe the test was a fluke or something about being in a doctor's office changed my response (maybe since I was more aware? I don't know).

    I feel like maybe some kind of infection is contributing to this, because it waxes and wanes in cycles --though it is always pretty severe.


    Much Appreciation

    john
  5. RunningAntelope

    RunningAntelope New Member

    John, the following abstract was what led me to Dr. Lerner initially, long before his name was "in vogue" with anti-viral therapy. My symptoms were almost identical to those described in his fourth paragraph, but quite severe.

    http://www.ncf-net.org/library/cardiac.htm

    He didn't find anything unusual about my rhythm or anything else except the high antibody titers to EBV and HHV6 that the majority seem to demonstrate (curiously, Dr. Cheney found major abnormalities with my heart and the clasic diastolic dysfunction). That and the fact that I was some ten years into the illness and felt like the infection was no longer my problem and anti-viral drugs are HARSH, so I bailed on him.

    As I said, perhaps they help the chronically infected, if that is, IN FACT, the issue and in the early stage of the illness. I believe Dr. Cheney (who was one of the first "virus-hunters" and used anti-viral and immunomodulating therapy way back when in Tahoe) attempted to emulate the Montoya trial with little success (his patients were simply sick all the time. Don't quote me on that -- it's just what I think I remembered hearing or inferring).

    As I said, my wife was helped by blood pressure medication (midodrine), but not florinef. However, she had followed an IMMACULATE diet and liver cleanse and moderated her stress levels greatly before the drug. But the drug seemed to snap her out of it. Then she got pregnant, which seemed to "seal the deal." Correlation does not equal causation though, and she was in her first three years of illness when many patients "spontaneously" recover. Midodrine, florinef, and salt all failed me. Here's more info on the cardiac insufficiency hypothesis, though it's dated. Good luck:

    http://www.cfids-cab.org/MESA/Lerner.html
    [This Message was Edited on 08/17/2009]
  6. jasminetee

    jasminetee Member

    Sometimes a bit of sun makes me feel a bit better. Some sun can also make us feel much worse. That's the conundrum of CFS. There are so many things going wrong with our bodies that we all respond differently to treatments and we often have different responses each time we try something ourselves.

    I have something like this problem too and it definitely contributes to me being mostly bedridden.

    RunningAntelope wrote, "[Cheney] speaks very convincingly of how many of the treatment approaches bandied about in the CFIDS universe may quite possibly be undermining the body over the long haul (many of the downregulated systems are compensatory, "defense" strategies used by the body for a very good reason).”

    I think this is very true and have always felt this way about CFS intuitively for the 2 and a half decades I've had it. Some treatments really do help PWC so I think trial and error is good.
  7. jasminetee

    jasminetee Member

    did this after I woke up today and I immediately grabbed a fruit roll-up that I keep next to my bed and my salt shaker that I keep there too. lol What a combo! Anyway I ate some of the fruit roll-up and sprinkled some salt on my palm and licked it off and my heart went back to normal. I also drank water.


  8. munch1958

    munch1958 Member

    Your may have adrenal insufficiency. Do you know if you are making DHEA, aldosterone, and cortisol? Have your thyroid levels been checked? Not the bogus TSH test, but a real test of Free T3 & Free T4?

    http://www.stopthethyroidmadness.com
  9. PoodlesMom

    PoodlesMom New Member

    Mine turned out to be mitral valve prolapse. The left, I think, leaks
    some blood back where it came from. How's that for medical jargon!! I had severe pain that knocked me down to the floor all day. Couldn't do anything without that pain putting me flat into bed. Hard to breathe, got clamy, but the pain was the worst.

    My cardio prescribed Metoprolol and it immediately took care of the pain. I take one in the AM and that's it. Only med I've ever taken that actually works so quick and that was about 2yrs ago.

    Good luck with you. Kathie

  10. simonedb

    simonedb Member

    hey do you have high b/p? I googled metoprolol and it sounds like normally used for h/p and I have very low b/p as do a lot of cfs-ers, wondering if its worth a try for the pain of diastolic dysfunction even w/low b/p and if then it'd be easy to get a sample from a doc.
    Saw Cheney as well year and half ago and like running antelope think his explanation made the most sense, but the bison stuff can't tolerate although I have found a little bit of hawthorne paste daily 2x helpful and magnesium drinks and just making sure to pace self, but been doing that for years out of necessity. and for some reason darvon has helped my heart over the years, helps me w/o2 somehow, not sure what the mechanism is, think it slows things down which in my case has bought me time over the years throughout the days.
  11. PoodlesMom

    PoodlesMom New Member

    I very rarely have high blood pressure. I think it is one of those meds that can be used for more than one thing.

    My bp runs around 120/78

    Hope this helps

    Kathie
  12. simonedb

    simonedb Member

    thx, I am going to look into that med of yours. what was your pain like that you associated with heart? If I dont lie down intermittently throughout day in the right amount I get a horrible feeling of internal pressure, like I ran a marathon and can't catch my breath although its not like i breathe weird, just feel it internally, makes me want to go into fetal position until it passes sometimes. If I time my time up and down in the right amount in a day I can avoid that gross feeling.
  13. simpsons

    simpsons Member

    julia newton spoke at the invest in me conference last year its not to expensive fifteen dollars or so.

    julia advised increasing the amount of fluid intake to increase blood flow as part of the problem in low circulating blood volume as in dr myhill and cheney etc

    and adding salt to your diet. julia warned that many people don.t use salt a s it is bad for you but that we need to add salt to increase our blood pressure if it is low as in our case

    i tried this and it works very well indeed .

    i have a great medical herbalist who recommended hawthorn that strengthens the heart muscle. i must say i find hawthorn fantastic and many others have also posted here that have also had great success with hawthorn. you can make your own tinctures up or get it from a good medical herbalist

    i also take tincture of mellissa which you can grow and add to a teapot. it s anti viral i take echinacea to support the immune system. echinacea is a great herb for me i find it stops me coming down with flu and cold virus

    this is my advise to you to get a good medical herbalist to tackle the viral problems and the salt and fluids thing is great

    i can say 90 per cent improvement with this stratagy

    goodluck
  14. PoodlesMom

    PoodlesMom New Member

    my pain was very similar and so was hard to explain to my GP. She sent me to the cardio dr. and he did like 4hrs of testing. I had a hard time walking out of there.

    He has a room with TV and recliners so I guess he's used to us CFS'ers.

    I had to lay flat on my back when those attacks hit.

    I still have to lay down several times a day (homebound). But that excrutiating pain was gone. And at the time I was on pain meds and muscle relaxers, so I had to go off everything for 3 days before tests. That was not fun at all.

    Does that answer for you?

    Kathie
  15. simonedb

    simonedb Member

    yea kathie thats helpful
    if you have time I would also be curious as to why you had to go off pain meds for a heart test, didnt know the heart doctor would see an association there
  16. PoodlesMom

    PoodlesMom New Member

    Sorry it's taken me so long to get back to you. Here we go, I'll try and make it short....

    This DR is a board certified cardiologist with an interest in CFIDS and thinks his therapy is best. First thing on the list before appt. was to not take any meds for 3 days before tests.

    I checked with my gp and she said OK. At the time I was on vicodin ES, flexeril, thyroid, enzymes, vitamins and probably more that I can't remember. My gp is a holistic, integrative MD so we were trying just about everything at the time. And I wasn't on anything that was going to threaten my life if I didn't take it. It just made me miserable.

    I guess he thought I was going to do a stress test on the treadmill, but of course coul'dnt do that so they used an IV med that can simulate it. That was excruciating. I was sitting on the exam table. He had to stop the test 2 times so I could lay down for a bit. After the testing was done I couldn't even carry my purse and hardly walk.

    Then he said, "Oh, that's right you also have Fibro. Let me carry your purse for you." Wasn't that just the nicest thing for him to do (sarcasm). I did let him tho and also my book and blanket as well. (went right to the lounger and waited for my ride.) And, yes I took all the pain meds right then and there.

    So I think it just gave him a more true fix on how bad my CFIDS was but the pain in my chest was because of the mitral valve prolapse.

    I have tried to cut down and eliminate the drug 2 times and by the 3rd day the big elephant was standing on my chest again.
    I'm not going to try that again any time soon.

    I'm not saying that's what you have. We have so many aches, pain, pressure, ripping muscle off the bones etc, it's hard to tell. I wouldn't want to be one of the drs with a patient like us.

    We can only hope these drs will get educated about this sooner than later. It's already later, I guess.

    I guess this wasn't exactly the short version. Sorry.

    Hang in there. Kathie
  17. RunningAntelope

    RunningAntelope New Member

    simonedb wrote:

    "hey do you have high b/p? I googled metoprolol and it sounds like normally used for h/p and I have very low b/p as do a lot of cfs-ers, wondering if its worth a try for the pain of diastolic dysfunction even w/low b/p and if then it'd be easy to get a sample from a doc.
    Saw Cheney as well year and half ago and like running antelope think his explanation made the most sense, but the bison stuff can't tolerate although I have found a little bit of hawthorne paste daily 2x helpful and magnesium drinks and just making sure to pace self, but been doing that for years out of necessity. and for some reason darvon has helped my heart over the years, helps me w/o2 somehow, not sure what the mechanism is, think it slows things down which in my case has bought me time over the years throughout the days."

    If you have true diastolic dysfunction (which any classical case of CFIDS does), hawthorne (leaves, not berries) helps (Dr. Cheney uses Standard Process brand) and magnesium injections (I take them with taurine per Cheney) help equilibrate an asynchronous heart. As for blood pressure, most of us have extremely low B/P. Mine was 90/60, at best, but has since improved to 120/80+. Nexavir (porcine liver extract) also seemed to help initially, though Cheney has since switched to his own cell signaling factors, and bison heart is one of them. But, at a minimum, if you are going to start salt supplementation, use SEA salt, because it more closely resembles the body's own chemical balance. Pure coconut water is helpful as well. They used it during some of the wars in place of plasma, because it so closely emulates our own blood plasma.

    Coffee raises BP too, but unless you can find an ORGANIC, UNDERROASTED brand at a natural health foods store, you will probably be getting none of the anti-oxidants and bioflavanoids, but all of the pesticide residue and other chemicals. Even decaf has chemicals used in the extraction process.

  18. RunningAntelope

    RunningAntelope New Member

    I posted this many times before, but this is a good place to start.

    http://www.cfids-cab.org/MESA/Lerner.html
  19. simonedb

    simonedb Member

    hey RA-
    thanks for the link on heart research etc
    as far as cell signalling factors I don't tolerate bison well so gave up on it, maybe should try the nexavir or kutapressin (not sure of the difference)
    I also didnt tolerate injections of mag (nor b12) so drink "natural calm" magnesium that get at vitamin shoppe. The only hawthorne I tolerated so far is an herb in a chocolate paste got at a local holistic pharmacy, dont remember brand off top of head. I couldnt tolerate magnesium sulphate paste either, seems sulphates dont agree with me or sulfites.

    as far as caffeine goes it may raise b/p but coffee hurt my gut and black tea I still drink but if not careful it seems to cause a bad backlash of messed up oxygen after an initial energy surge and my theory is that it messes up my heart beat, maybe speeds it up which messes with b/p oxygen etc

    it sucks being p450 sensitive, limits treatments
  20. ChungieDolor

    ChungieDolor New Member

    and or pumping too fast. Or breathing in and out excessively. I have experienced probably too much in my young age! So they say! Of the hundrend diagnosises, I have been diagnosed with metabolic syndrome. This is based on blood work, and the fact that my mother has heart problems. I need updated lab work since it has been a couple of years. So, we will see!

    Sincerely,
    Chungiedolor