Heartful Information on CFS

Discussion in 'Fibromyalgia Main Forum' started by ABCDfamily, Sep 2, 2006.

  1. ABCDfamily

    ABCDfamily New Member

    I suffer from CFS/Fibro/Dysautonomia/SVT's or MVPS. The DR's are not really sure which one came first, CFS or Dysautonomia. I believe it's Dysautonomia because I was born with Mitral Valve Prolaspe and rapid heart rate (so my cardiologist believes). It was picked up after the birth of my daughter, 2nd child. Many years I went through this fight or flight thing, caused by the SVT's that probably damaged my immune system which caused the CFS. So the theory is, let's fix the SVT's (hopefully), through an ablation which may improve the CFS but not cure it. My body has suffered some damage of living like this for years, since childhood.

    When someone suffers from SVT's the first thing DR's try and tell us is: It's panic attacks and we need to go see a therapist. I don't need to tell anyone here the long list of DR's I have been to through out my years. You all know the pain because you too if you are reading this have been there or are probably there now. I'd like us all to know and believe there is HOPE. It's been proven that I suffer from SVT's because of the event monitor I have had to wear on more than one occasion. My Cardiologist told me that for years many DR's ignored the racing heart and went right after the label "panic attacks" etc. Therefore, the problem was never fixed and hundreds of thousands of people come down with CFS/Fibro/Dysautonomia and the alike health problems. If our body is always going in and out of the "fight or flight stage" due to SVT's, physiological not psychological, you can imagine, what this can do to us over a period of time. It throws our system off balance which can cause many other symptoms.

    I share this with you because anyone who does have this symptom often should have this really checked by a good Cardiologist. I'm not suggesting that this is what it is, I am informing you of my years of experience of what I have had to live with. If I can help just one person, then that person will touch someone else and so on.

  2. ABCDfamily

    ABCDfamily New Member

    haylecole: All of tht I believe to be true, also, even non-life threatening cardiac problems can cause many of the symptoms too. In essence they feed off of one another. I'm not an expert by any means, I have been dealing with this for years. I keep coming back to the cardiologist. The heart affects the brain and the brain affects the heart. It's just been figured out (hopefully) that mine is caused by the heart (SVT's) and I hope it can be fixed.
  3. ABCDfamily

    ABCDfamily New Member

    I understand what you are saying. I'm glad the lightning "therapy" if you will, can help certain people. I'm not saying I wouldn't try it because I am open to anything that assist me in getting better. That being said, it sounds the this technique is more behavioral based like Pavlov's dogs to a piece of meat. I have been through many years of therapy, I was praying to have a mental illness or something I could take a pill for and get better. I know there is a lot more involved but you get my point, I hope?

    I was even in denial for years thinking maybe it all was in my head, heck, I've been through the cycles a few times. Yes, the definition of insanity is doing the same thing over and over again expecting different results. In my case I wanted to believe it was mental and had to accept the fact that it was physiological. I know it sounds crazy but the idea of having something that did not have a cure, a pill I could take or even something anybody understood let alone believed seemed horrific to me. I had no choice but to accept my fate, but do not think for one minute I am ever going to stop trying to find ways to get better or try new methods. I'm constantly working on the mind/body connection and always researching. One can never be too educated, too optimistic or too giving if our mind is healthy. I find, although, my body may not be the healthiest, I sure can work on my state of mind which does affect my well being. It does not make my illness go away but it does help me cope with my fate that I cannot run from.

    Take good care.

  4. ABCDfamily

    ABCDfamily New Member

  5. momshoaf

    momshoaf New Member

    Hi ABCDFamily,

    I too have the CFS and dysautonomia. I have read that IF your dysautonomia includes drops in bp when standing etc, then slowing down your heart can then cause HUGE problems with postural hypotenstion, the racing heart has its purpose in trying to raise your bp to normal. I would hate to have something terrible happen to you because ANOTHER doctor is trying to fix the symptoms and not the cause!!!!!!!

    See this site:
    http://www.potsplace.com/what_to_avoid.htm

    (I pasted the following paragraph about Ablation for your convienance)


    Dysautonomia Information Network
    POTS Place: A Guide to Postural Orthostatic Tachycardia Syndrome

    What to avoid

    "Ablations may be detrimental to POTS patients. A Mayo Clinic study reported short-term success in five of seven ablated patients with inappropriate sinus tachycardia and postural orthostatic tachycardia features (Shen, Low, Jahangir, Munger, Friedman, Osborn, Stanton, Packer, Rea & Hammill, 2001). However, long-term outcomes were disappointing in these patients. None of the patients experienced complete eradication of symptoms. A follow-up evaluation showed no vast improvement in symptoms, despite better heart rate control. A later publication states "in our laboratory, sinus node modification, total sinus node ablation, or atrioventricular nodal ablation is not recommended for patients with inappropriate sinus tachycardia who have autonomic evidence of postural orthostatic tachycardia" (Shen, 2002).

    Ablations have reportedly been detrimental to some POTS patients who were misdiagnosed as having inappropriate sinus tachycardia. After the apparently successful elimination of their "sinus tachycardia", they were left with profound orthostatic hypotension (Grubb & Karas, 1999)."


    very concerned,
    Momshoaf
  6. ABCDfamily

    ABCDfamily New Member

    Momshoaf,

    Thank you for that information, it makes sense and sounds scary to be left with complete OI. I'm looking into all of this.
  7. momshoaf

    momshoaf New Member

    If there is one thing that I have learned in these past 9 years and that is to NOT BLINDLY TRUST ANYTHING ANY MEDICAL PROFESSIONAL SAYS ABOUT ANYTHING ever!!!!!. Research, research and then research some more. We are so blessed to have an incredible amount of information right at our fingertips. I had to buy a laptop in order to be able to do any reasonable amount of research since I couldn't sit up at my desktop long enough. Thank God they are so reasonably priced. I think mine was around $500.00 and that included 3 years extended warranty. I am on this thing hours every day, always semi-reclined.

    That is how I learned about Ablation. Isn't that the most frightening thought to be put into a profound and irreversible state of OI!!!!

    I have been reading Dr. Cheney's research as well as his remedies on the nutritional end due to so much info seeming to be connected to mitochondrial damage as far as the chronic fatigue part goes. Good luck with your search. I am sure that the Ablation is good for some folks BUT I think one should know WHY the heart is beating too fast before blindly slowing it down. OUR BODIES HAVE A STRONG PROPENSITY FOR SELF-PRESERVATION. Many of our symptoms are exactly that. While they may be miserable, they are often protecting us from a much worse fate (now that's a scary thought!) momshoaf
  8. ABCDfamily

    ABCDfamily New Member

    momshoaf:

    I'm right there with you when it comes to research. Here is my Cardio's perspective. I have Dysautonomia/POTS/CFS, what have you, because, I have SVT's. My body has lived in a constant state of "Fight or Flight" I was born with this she firmly believes because I have MVP (Mitral Valve Prolapse) with slight regurgitation (born with both, MVP/SVT's). When your body is always going in and out of this state, your body breaks down resulting in CFS/Dysautonomia/POTS etc. It's her opinion and I am currently checking into this. I have calls into some DR's I know who may be able to refer me to other Cardio's, although, I tend to believe in this Cardio. I have had issues with my health since I can remember, from grade school until now. My rheumy believes it's my body and my Cardio says, yes, it's your body and this is where the problem is. I'll keep you posted.

    Any other thoughts on this? I love this kind of insight and knowledge. This is a tremendous help for me.

  9. ABCDfamily

    ABCDfamily New Member

    What does my last response to momshoaf sound like to all of you? It's a belief my Cardio has and something I am trying to wrap my head around and do lot's more researech on.
  10. momshoaf

    momshoaf New Member

    ABCDFamily,

    Looking back over the 9 yrs since my symptoms began (I just turned 46), I firmly believe that it was the toxic effect from taking the diet drug combo fen-phen along with living in a constant and highly stressful home environment (not relationship issues-living conditions, too small home, inability to move up, back park management, etc) that caused my body to "shut down"---It is funny how I feel it appropriate to say that it shut down yet I too feel wound up like adrenaline is racing through me most of the time ESP after I try to fall asleep at night!!! I know I haven't slept a full night in over nine years now BECAUSE I CAN'T stay asleep for more than 1-2 hours at a time IF I even fall asleep. The fen-phen seems to cause brain damage (neurotoxicity) as well as valve damage (I had newly diagnosed valve regurgitation after taking fen-phen-previous echo showed none!) and the fatal lung disease (the one thing that didn't get me)

    In regards to whether your condition is cardio or other---from my understanding after reading hundreds if not over a thousand articles by now, it is ALL THE ABOVE! Maybe you had an inborn condition but from what I have read, when one's body is in a diseased state, it can start a downward spiral that breaks down the functioning of system after system all the way down to the mitochondria in your cells. Mitochondria is responsible for making energy---if it can't, you suffer chronic fatigue. I guess it is a self preservation thing. I suggest reading Dr. Paul Cheney's theory's on it. Very interesting. Also do general searches on google, type in a combination of words like mitochondria, CFS, MVP etc . You will be amazed at how everything is interconnected. This is one reason why it is so hard for "A" doctor to know what to do and why we wind up getting passed around from one specialist to another. The fact is, each specialist may need to play a part in helping out. AS IS OBVIOUS, there is a big problem with the intercommunication that would need to go on between one particular set of doctors so that the "bigger picture" of our health issues could be addressed. I think the only thing that would be practical would be having one great PCP that could be home base for all test results to be centralized and that PCP could contact each specialist on patients behalf--HA HA HA, like they are going to take the time to do that????? What a blessing if one would!

    All I can say is READ READ READ, there is so much info on line, just type in symptoms or test results and go from there. It is like being a detective, one clue leads to the next.

    One day the medical would will understand dysautonomia/CFS and related, and will be humbled by what they learn. Patients will then be held in much higher regard with the realization of the incredible suffering that goes on unrelentingly year after year after year.

    Think about it, we all know that those around us "OCCASIONALLY" toss and turn all night and never fall asleep. The following day everybody hears about how wiped how this one-night-stand insomniac feels; most I know get all dramatic about how all encompassing the weariness is from missing one whole night of sleep. I also know when I point out the fact that THAT is my existance (as well as the muscle weakness/pain, chest pain etc), they just look at me dumbfounded. Nobody really believes one can continue day after day feeling so lousy ALL THE TIME. Maybe that is why the suicide rate is so high???? Nevertheless, we must not give up hope. I know for the first time I finally have a doctor who seems to take the seriousness of my state seriously! It has taken 9 very long years.

    Also ABCDFamily, about which came first---as far as my situation goes, I think it all happened at the same time. I'd have to guess if one had to start first, it'd have to be the dysautonomia since one can have that with no symptoms (as far as I know) but after a while, the body begins having to have trouble coping with a screwed up autonomic nervous system and then the downward spiral begins---most likely what they refer to as a "trigger" be it a viral infection, a toxic reaction to chemicals/drugs, stressful emotional situation, traumatic injury such as being in a car accident, falling down stairs etc. For some the fatigue is a gradual progression, for me it was instant. One minute I was fine, then I wasn't.

    Current research seems to be pointing to major nutritional support. Does anyone have any positive outcome with this route?

    momshoaf
  11. ABCDfamily

    ABCDfamily New Member

    Hi Wake Me Up,

    I finally had time to get to all of my emails and catch up on things like this board which is wonderful. I wanted to Thank you for sending me this information. I have this book and I've had dinner with the DR. Goldstein and the founder of this organization. There was some noise going on years ago about which was more reasonable, Dysautonomia or CFS. I've been to the conferences and the amazing thing is DR's really don't know. I'm glad that there is a name change going on because CFS sounds like a big cry babies syndrome.

    I have decided to NOT have the heart ablation surgery at this time. I have been weaned off of the beta blocker and so far so good, I'm keeping my fingers crossed.

    Lately I have been working on putting together business owners, executives, and entrepreneurs representing a melting pot of industries ranging from fashion design, the arts, sports,local theater, health and beauty, to HR Services, technology services and local publishers. The idea is to pair non-profits/charities with organizations and provide our community with more education. We can never do enough to help our own cause and while were at it I'd like to help as many charities as possible. I've just asked someone to partner up with me as this is a huge undertaking.