Is Heart Disease in ME/CFS and FM Patients Future?

What risk factors do you have for heart disease?

  • Obesity

    Votes: 24 23.5%
  • Smoking

    Votes: 9 8.8%
  • Past menopause

    Votes: 65 63.7%
  • High LDL (bad cholesterol) or low HDL (good cholesterol) or high c-reactive protein levels

    Votes: 32 31.4%
  • Physical inactivity

    Votes: 92 90.2%
  • High alcohol intake

    Votes: 0 0.0%
  • Sleep apnea

    Votes: 29 28.4%
  • Family History of heart disease

    Votes: 47 46.1%
  • Stress

    Votes: 58 56.9%
  • Poor Diet (high saturated fats/processed foods)

    Votes: 5 4.9%

  • Total voters
    102

HMBCheryl

Member
Before CFS, my healthy diet and active lifestyle was intentional, in part because both of my parents had heart attacks at age 56. I wanted to do anything within my control to counterbalance my genetic risk factors. Twenty five years ago I wrote a term paper about the hazards of immobility, for Nursing school. I learned how the body breaks down system by system, destroying health and creating more illness when patients were prescribed prolonged bed rest. Now as I become progressively more sedentary, trying to keep my symptoms manageable, I have to laugh at the absurdity and irony. My Father' s triple bypass got him another 16 years of a good life, and he did not die of heart disease, but of colon cancer. My Mother's treatment for Congestive Heart Failure has her still alive and able to do everything she wants to do. If I had a choice, I might trade in my CFS for a heart attack, for a chance at a return to a productive, active life. Unfortunately, I don't get to choose and may just end up with both.
 
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dee

Active Member
I hope he's wrong - but I guess he's think a viral infection. I believe he had one and he has those holter monitor tests. For some people I'm sure that it is....Unfortunately in the US despite the fact that there are many cases of idiopathic cardiomyopathy they test for viruses hardly at all.

yep, he believes for me its Epstein Barr attacking the heart. I think since he suffered from it in the 80's, he should know, ya think? viruses are a HUGE problem but drs. just don't look into them and some believe a LOT of illnesses are caused by viruses and i'm sure you yourself know many virus causing illnesses. ebola, hiv, polio just to name a few. the ROOT of many illnesses!
 

Cecelia

Active Member
I have ME/CFS and expect heart trouble. This is because of severe hypotension problems. To be able to get around sometimes I am walking or standing what feels like heart failure, not only graying out of vision, brain not cogitating and other symptoms of being about to pass out. I also can't get much exercise, and none of it is aerobic. Aerobic exercise brings on too much exhaustion through the following day so I avoid it. Before all this started, I used to be fit and active. I am not obese beccause my body could not possibly handle the strain, both of processing the food and carrying it as weight. With severe hypotension, it is impossible to stand up with a full stomach.
 

Steve

Well-Known Member
I was exercising with a weight and cardio program video for decades with moderate fibro but when it started getting bad two years ago I had to slack off. By six months ago it had gotten to where I've stopped exercising due to arm/tendon pain, concrete legs or neuro pain feet, and worse pain following exercise. I don't know any way around this problem and miss my exercise every morning. I never thought cardiac problems were in my future but now I'm not so sure. Of course, choosing between a massive coronary and a nasty fight and death from cancer is a no brainer IMO. Pain makes you a realist.
 

dee

Active Member
cecelia, I used to suffer from POTS and ate salt to be able to sit/stand up. now I have HIGH BP so salt no more BUT it did make me feel better when I poured it in my hand and threw it in my mouth and watered it right down! I sneezed a while ago and still fighting to breath, huff-puff, huff-puff. boy do I feel TERRIBLE. cognitive problems BIG time! sorry, just not strong enough yet to talk. sorry. :>(
 

Vicki

Member
I was always active and a big walker years ago and while FM (and CFS) may limit other patients activity, since I quit full-time work and have the time to pace my life better, I'm getting back into some walking. My limited mental and physical reserves are not being wasted on going to work.

It took about 2 months of gradually increasing my walks (as I have the inherited form of Hypertrophic Cardiomyopathy) from about
15 minutes to hours. The secret really is to walk slowly. Walk in slow motion so to speak.

Despite the initial increased pain and inflammation when I quit work in Feb 2010, I have to say it really was worth persevering. You just have to find what works for you. Same with diet.

If you try to walk around the block after not exercising for months or years, of course you're going to feel tired (or even exhausted).

I remember distinctly being able to walk normal pace for only about 20 metres before getting chest pain in early 2010, but now, as long as I start very slowly and stroll along, I'm just fine. I still can't hike up slopes, but that's the cardiomyopathy, not the FM/CFS.

If I do anything much at normal pace, I can tire, but doing something slowly (without trying to hurry so I can get it over with and then rest) is really my own key to success. Heart meds AM and PM keep my heart rate slow so it doesn't have to struggle pumping blood out of the narrowed valve. In turn I do everything slowly and mindfully to add to the meds efficacy.

I slept 12-14 hours for the first 3 weeks after quitting work, but then I slowly started to improve. Many newly diagnosed FM/CFS patients don't realise how lack of deep restful sleep affects their mental and physical well being. Movement to help the lymph system throw off the body's toxins is another boost to improving symptoms.

I feel deep sympathy for those that are housebound or bedridden as I know how poorly they do with their overall health - mental & physical.

If you can't walk outdoors and are not bed bound like the very worst sufferers, try walking around the room twice a day and after a few weeks, try walking from one end of the house to the other, then very slowly increase movement from there. If you watch TV a lot in the evening, try getting up every ad break and walk around the room for example. Start small.

Dare I say, don't try so hard.

I just had another echocardiogram recently and while my valve leakage with my Cardiomyopathy is worse, I really don't think I feel worse while walking. I've just learned to pace myself and do what works (for me).

Normally when one walks up a slope or hill. one tends to breathe in and push forward. I've learned to do the opposite. I was talking to my Cardiologist about this deep breathing exercise I do and how I reverse my body's automatic reaction to exercise. I breathe out and tighten my calf muscles to make my legs do the work and not my lungs and heart. Every time my heart beat increases, I stop for a few seconds or a minute and then continue up the hill when my heart beat goes back to its usual slow pace.

Twice I've gone on a very high salmon and omega 3 diet (and reduced the omega 6 & 9 and deleted red meat from my diet) and each time, my triglyceride levels have improved dramatically. Unfortunately now I'm living on a Government disability pension, I can't afford that perfect diet, but I sincerely believe the right diet (for you) and increased activity does make a difference to weight, metabolism and cholesterol.

If you want change to happen, you've got to find out what works for you and how to make it happen. A pill or therapist can only do so much.
 

Vicki

Member
I was exercising with a weight and cardio program video for decades with moderate fibro but when it started getting bad two years ago I had to slack off. By six months ago it had gotten to where I've stopped exercising due to arm/tendon pain, concrete legs or neuro pain feet, and worse pain following exercise. I don't know any way around this problem and miss my exercise every morning. I never thought cardiac problems were in my future but now I'm not so sure. Of course, choosing between a massive coronary and a nasty fight and death from cancer is a no brainer IMO. Pain makes you a realist.

I can't do any repetitious floor or machine exercises, but can walk slowly. Well, slower than average. Forget weight and cardio programs as they usually involves specific muscle groups being moved repetitiously. The quickest way to get a FM flare is to do something repetitiously in a small time frame.
 

Tim Foley

Member
I'm a post Lyme's person with some valve damage, I believe due to infection. My condition now very much resembles CFS or is CFS and I can not discount the idea of an infectious cause to our conditions may cause heart damage.
 

Suella Postles

New Member
how does one exercise with M.E.??? does getting out of bed count? :>( I would LOVE to be able to exercise, like a walk, but would I remember to come home and remember where? HUFF-PUFF, HUFF-PUFF! i'm EXHAUSTED just washing my hair!

Dr. Lerner said its CARDIOMYOPATHY!
===============================
Dee,
I don't know you so this may be inappropriate. Delete if so.
Washing hair can be tough with arms above heart and head and maybe standing in a shower. It certainly pushes my heart rate up.Can you do it seated and with a spray that you could use bent over even? That might save a bit of energy.
Stretches are both good for us, take less energy than multiple repetitions of "exercise" and help open up our innards. I use what I call nano-movemnts over the course of the day to help me stretch and strengthen. I'll be you can think of at least a dozen things and places you can fit in movement and isometrics.

Suella
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Before CFS, my healthy diet and active lifestyle was intentional, in part because both of my parents had heart attacks at age 56. I wanted to do anything within my control to counterbalance my genetic risk factors. Twenty five years ago I wrote a term paper about the hazards of immobility, for Nursing school. I learned how the body breaks down system be system, destroying health and creating more illness when patients were prescribed prolonged bed rest. Now as I become progressively more sedentary, trying to keep my symptoms manageable, I have to laugh at the absurdity and irony. My Father' s triple bypass got him another 16 years of a good life, and he did not die of heart disease, but of colon cancer. My Mother's treatment for Congestive Heart Failure has her still alive and able to do everything she wants to do. If I had a choice, I might trade in my CFS for a heart attack, for a chance at a return to a productive, active life. Unfortunately, I don't get to choose and may just end up with both.
Isn't that something....It's harder for you because you so well know the risks. A painful irony indeed!:meh:
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have ME/CFS and expect heart trouble. This is because of severe hypotension problems. To be able to get around sometimes I am walking or standing what feels like heart failure, not only graying out of vision, brain not cogitating and other symptoms of being about to pass out. I also can't get much exercise, and none of it is aerobic. Aerobic exercise brings on too much exhaustion through the following day so I avoid it. Before all this started, I used to be fit and active. I am not obese beccause my body could not possibly handle the strain, both of processing the food and carrying it as weight. With severe hypotension, it is impossible to stand up with a full stomach.
It would be interesting to ask how many people have hypotension. I imagine a significant subset do...It's funny that salt intake doesn't appear to affect my blood pressure negatively at all.

I didn't realize about that the flip side of hypertension causes problems with the heart as well.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
cecelia, I used to suffer from POTS and ate salt to be able to sit/stand up. now I have HIGH BP so salt no more BUT it did make me feel better when I poured it in my hand and threw it in my mouth and watered it right down! I sneezed a while ago and still fighting to breath, huff-puff, huff-puff. boy do I feel TERRIBLE. cognitive problems BIG time! sorry, just not strong enough yet to talk. sorry. :>(
Dee have you tried taking salt and then checked the effect it has on your blood pressure? I don't know ANYTHING about the relationship of the two - how it might cause increased blood pressure - but high salt intake doesn't seem to have effected my blood pressure.

I just found this:

http://www.todayifoundout.com/index.php/2013/02/why-does-salt-raise-blood-pressure/

Well, Matt, it turns out a high sodium diet might not raise blood pressure, nor have any sort of adverse effect on cardiovascular health at all. But I’ll cover the theory on why salt raises blood pressure below- just realize it is just a theory and one not backed up by much of any hard scientific evidence (and there is more evidence that says it doesn’t than does).

The debate over eating too much salt has been around since the 1960s. Almost every major governmental health organization embraces the idea that eating too much salt is damaging to your health. Most major news outlets report on these recommendations and people tend to try and follow them. This is most likely why most of us, especially the elderly with heart problems, know to reduce the amount of salt we eat. Those of us who like the idea that any recommendation be backed up by solid evidence, have to step back on this one. As stated, currently there is no solid evidence that salt will chronically raise your blood pressure. Yes, none.

So why have most health organizations pushed the idea of low sodium diets? The theory behind their supposition is sound, and there are some studies that show a minor risk of elevated blood pressure with extremely high salt intake. Unfortunately, there are many other studies that show no increase, and still some that show reducing salt intake might actually raise your blood pressure! Let’s look at the controversy in more detail.

The idea salt will increase your blood pressure has to do with osmotic pressure. Osmosis is the movement of a solvent (in this case water) across semi-permeable membranes (like cell walls), from areas of lower solute concentration (in this case salt) to areas of higher solute concentration. This naturally equalizes the solute concentration on both sides of the membrane. (This osmotic pressure is also why salt can be used to preserves meat.)

So the theory goes that when we eat too much salt, our bloodstream has more sodium in it than the surrounding areas of our body. This causes the water in those areas to be pulled into our bloodstream. The increase in water within the arteries and veins causes an increase in the pressure within those arteries and veins. The salt itself also acts like an irritant within the arteries causing them to constrict. This too is thought to increase your blood pressure.

The theory seems, on the surface, very sound. After all, we can make the process of salt pulling water through membranes happen time and time again in the lab. The question is, does this actually happen within our bodies, and does this actually cause long term hypertension (high blood pressure)?

In 1969, Lewis Dahl testified before Sen. George McGovern’s “select committee on nutrition and human needs”. He was concerned about the high concentrations of sodium in baby foods and thought this might cause increase in people’s blood pressure long term. His reasoning was that studies done on rats showed increases in the blood pressure of the rats.

The conversation about salt and hypertension began to circulate among health organizations. The National Institutes of Health, in 1972, began introducing “High Blood Pressure Education Programs”. As their evidence, they pointed out observationally, populations who ate very little sodium had low incidents of high blood pressure. They also pointed to the rat modeling. Scientists at the time questioned this, as the rat studies had them eating 60 times what the average person does. They also pointed out the populations who ate low sodium diets, also ate low amounts of other things, like sugar (which also affects osmosis).

Despite their objections, publicly, the idea of high sodium diets causing high blood pressure was here to stay, and remains today. The Centers For Disease Control, The National Institutes of Health, The American Heart Association, and many other organizations currently promote low sodium diets.

Despite the seemingly unified front presented by these distinguished organizations, the controversy among scientists is extremely heated. In 1998, award winning author Taubes, published “The Political Science of Salt” in the Journal of Science. He stated, “The controversy over the benefits, if any, of salt reduction now constitutes one of the longest running most vitriolic and surreal disputes in all of medicine.”

One surgeon general in a report wrote, the speed with which US federal agencies embraced sodium reduction, “stood in stark contrast to how long it had taken for recommendations to emerge on the importance of reducing blood cholesterol levels”. He also noted that the difference was even more remarkable considering the absence of published research that actually tested the theory. On the flip-side, Sir Micheal Rawlings, the chair of the National Institute for Health and Clinical Excellence, who promotes salt reduction diets argued that, “Guidance (in policy making) is based on the best available evidence. The evidence may not, however, be very good and is rarely complete.” Not a very strong argument for reducing salt intake.

Let’s look at a few relatively recent studies. In 2008, Italian researchers began publishing the results from a series of clinical trials, all of which reported that, among patients with heart failure, reducing salt consumption increased the risk of death. These studies were followed by others which showed among Type 1 and 2 diabetics, healthy Europeans and patients with chronic heart failure, those that ate salt at the lower limit of the normal range weremore likely to have heart disease than those who ate salt in the middle range of normal.

In 2011, two Cochrane reviews found no evidence that low salt diets either improved or worsened peoples’ health. They stated, “After more than 150 random clinical trials and 13 population studies without and obvious signal in favor of sodium reduction, another position could be to accept that such a signal may not exist.”
 
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dee

Active Member
your asking TOO much to do with this illness. housebound here but was bedridden for a few yrs. when first hit. I could not awaken! now that I am sitting here, I manage to walk around the house because I have to use the ladies room and eat but my dear friend brings me food then when my sister comes she brings food. even eating is too much at times and a lot of food ends up in the trash! chewing can be mighty hard! I just exist since this illness hit overnight. feel like i'm in a bubble, the pressure in my head sort of like my own little world where I can't reach out to others. now I notice my friend wants to talk over the phone with me but when i'm not doing well, I have to cut it short and he wants to talk just like my sister but i'm not strong enough just to listen. boy this illness makes NO sense! the exhaustion, the weakness, the forgetfulness, the HEADACHES, the dizziness etc. huff-puff, wow, what a mess! I say I suffer from ATM- ALLERGIC TO MOVEMENT! :hungover:
 

Mwasi

Member
Hello to all of you. Strange timing too for me as I have arythmic problem that seems to increase since few. I ask to meet a cardiologist after an holter test already done. Yesterday, I was discussing with a friend who told me that this problem is often related to ME/SFC. Let's see in November what will happen with this!

The other sickness to consider is the restless legs syndrom: unvolontary legs movements during sleeping do not help hearth to get rested. This is another problem to consider in the overall picture and in my case, this is a huge one because not treated. All medication I tried to reduce movements had really bad effects on me. So I have antipain for fibro/ME and medication for cardiac problem.

Better than nothing :)

Have a great day
 

RLS

New Member
All of this does not surprise me - a sufferer of CFIDS/FM - for the past 23 years (may be due to poisoned by Dupont Benlate DF fungicide used in foliage nursery across the road &-outlawed in 90-91 & the State of FL. dumping improperly stored Malathion from planes onto us for 6 straight months (1998?)0) - they killed the fruit fly and the orange groves to boot)! .

My weight has ballooned 50-80 lbs due to medications and inactivity. My physical activity maybe gets to my "normal" past performances once or twice a month. I am woken up by medications, I am put to sleep by medications - as there was very little if any recommend regime 23 years ago. Heart disease runs in my family although I am the only child (6 of us) out of 2 fathers and 2 mothers that does not have diabetes. Also, being a young lady of just turning 60, I do not have high BP. LDL has been a problem for decades - heredity I assume, along with a high pulse - last reading 118, hereditary from same family side - mother. Once was found to have Left Ventricular Hypertrophy (athletic type) and nurse practitioner stated that the only reason the cardiologist could account for that - was the stress of FM. Furthermore, I was once used (after my reg. appt.) as a "teaching" subject for resident doctors at the USF Medical Center Tampa, FL. Dr. Frank Vasey illustrated the red running through my arms and stated in medical terms what it was and then pointed to my eyes and stated that "inflammation" medical terms - of which is one of many notebooks. Mayo Clinic also took a biopsy after they noticed in 2002 . It is a not-fatal variety of vascular-something. My concern of recent is that my eyes are showing what may be an advancement of what Dr. Vasey had stated over 10 years ago. Now the veins in my eyes are squiggly instead of wavy -which apparently indicates normally High BP - which I do not have - the pulse is my issue. Eye doctor is concerned and stated if I appear to develop what looks like pink eye - to return immediately as it may be something other than pink eye (never have had that). For approx. 3 years (200-2005) I saw one of the top 2,000 scientist in the world, Dr. Robert H. Keller, M.D. - whose main expertise was autoimmune such as AIDS and what he considered CFIDS. At that time I was not on narcotics and did well, considering. He has since passed from the very disease he was combating - autoimmune. Yes, I do jump around as one of the effects of FM - cognitive difficulties of which I did receive a neuro-psychological 2 days test validation (have results (2005)) performed by Dr. Alexander Kusuch, PhD Neuro-Psychologist .

As for question of fatigue - that is my greatest stress and reason for any health problems I do have (majority unique) - as Dr. Vasey used to say, "I look great on paper."

I am so tired and it has cost me a wonderful career as a computer programmer for the State Judicial system. (SS Awarded back to 2004).

I didn't want SS, I didn't want to be here 23 years later, typing the same stuff - over and over. Since Dr. Jarred Young at UAB (given his name) has given himself & staff 5 years, I pray he is right and overrides the long wait with the FDA (they know nothing) and I can for once, sigh with relief, that maybe before my life is over completely - his work will be my reward.
 
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Katie

Active Member
I have an atrial valve stenosis (heart valve does not close properly), POTS, hrt palpitations-makes my chest feel like I'm having a (mild) heart attack. I need to either drink gatorade or add Na+ (sodium) to my diet as I've been dizzy and my BP is low again at 88/50
I'm hoping my former very active self will help prevent future heart problems.
Three years ago I was so anorexic (not on purpose) I was very nauseated and vomiting every day, I went down to 82 lbs. Not good for my over-all health including the stress on my heart.
I would love to exercise, I miss it a lot but I cannot get to an aerobic heart rate ever, I crash and burn.
 

fdotx

Well-Known Member
Good luck with that.....I do know of someone with heart issues whose energy was quite improved when they got taken care of.
I knew someone with serious heart issues who had a sudden death but tons of energy, worked full time in her 70's, travelled extensively etc right to the end.
 

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