Do we think CFS affects the heart or not ?

[Sing]

I try to insist on getting tested while standing up, especially standing up for awhile, so my blood pressure can do its usual "tank". I say that my blood pressure is usually fine sitting but the problem is standing, so I want to be checked standing. I don't like having to assert myself or always having to try to educate doctors and nurses about ME/CFS, but the alternative is their not finding the problem because they are testing wrong, and my being alienated again with treatment that doesn't recognize or help.

 

[Gijs]

Yes, for a subgroup of CFS and POTS patiënts it affects the heart.

Neth Heart J. 2016 Aug 25. [Epub ahead of print]
Chronic fatigue syndrome in women assessed with combined cardiac magnetic resonance imaging.
Olimulder MA1, Galjee MA1, Wagenaar LJ1, van Es J1, van der Palen J2,3, Visser FC4, Vermeulen RC4, von Birgelen C5,6.
Author information

• 1Department of Cardiology, Thoraxcentrum Twente, Medisch Spectrum Twente, Enschede, The Netherlands.
• 2Department of Epidemiology, Medisch Spectrum Twente, Enschede, The Netherlands.
• 3Department of Research Methodology, Measurement & Data Analysis, University of Twente, Enschede, The Netherlands.
• 4Centre for Chronic Fatigue Syndrome, Amsterdam, The Netherlands.
• 5Department of Cardiology, Thoraxcentrum Twente, Medisch Spectrum Twente, Enschede, The Netherlands. c.vonbirgelen@mst.nl.
• 6Department of Health Technology and Services Research, MIRA-Institute for Biomedical Technology & Technical Medicine, University of Twente, Enschede, The Netherlands. c.vonbirgelen@mst.nl.

Abstract
OBJECTIVE:
In chronic fatigue syndrome (CFS), only a few imaging and histopathological studies have previously assessed either cardiac dimensions/function or myocardial tissue, suggesting smaller left ventricular (LV) dimensions, LV wall motion abnormalities and occasionally viral persistence that may lead to cardiomyopathy. The present study with cardiac magnetic resonance (CMR) imaging is the first to use a contrast-enhanced approach to assess cardiac involvement, including tissue characterisation of the LV wall.
METHODS:
CMR measurements of 12 female CFS patients were compared with data of 36 age-matched, healthy female controls. With cine imaging, LV volumes, ejection fraction (EF), mass, and wall motion abnormalities were assessed. T2-weighted images were analysed for increased signal intensity, reflecting oedema (i. e. inflammation). In addition, the presence of contrast enhancement, reflecting fibrosis (i. e. myocardial damage), was analysed.
RESULTS:
When comparing CFS patients and healthy controls, LVEF (57.9 ± 4.3 % vs. 63.7 ± 3.7 %; p < 0.01), end-diastolic diameter (44 ± 3.7 mm vs. 49 ± 3.7 mm; p < 0.01), as well as body surface area corrected LV end-diastolic volume (77.5 ± 6.2 ml/m2 vs. 86.0 ± 9.3 ml/m2; p < 0.01), stroke volume (44.9 ± 4.5 ml/m2 vs. 54.9 ± 6.3 ml/m2; p < 0.001), and mass (39.8 ± 6.5 g/m2 vs. 49.6 ± 7.1 g/m2; p = 0.02) were significantly lower in patients. Wall motion abnormalities were observed in four patients and contrast enhancement (fibrosis) in three; none of the controls showed wall motion abnormalities or contrast enhancement. None of the patients or controls showed increased signal intensity on the T2-weighted images.
CONCLUSION:
In patients with CFS, CMR demonstrated lower LV dimensions and a mildly reduced LV function. The presence of myocardial fibrosis in some CFS patients suggests that CMR assessment of cardiac involvement is warranted as part of the scientific exploration, which may imply serial non-invasive examinations

 

[mission impossible]

Here is a link that summarises heart problems in ME/CFS in one page

http://findacureclub.weebly.com/heart-problems-in-me.html

 

[Alexi]

Is there any info I should go armed with when I next see my cardio after I've had 24 hour monitor and echocardiogram? I want to ensure I'm not being dismissed with the ME label !

 

[valentinelynx]

N of 1, but after an episode of extreme overexertion (running in airport to not miss last plane home) in July, I developed extremely frequent PVCs (over 20% of my heart beats are now premature ventricular contractions, "extra beats"). In fact, any activation now causes me to go into bigeminy, in which every other beat is PVC. This feels like someone kicking my chest from the inside repeatedly for hours on end.

I've never had any kind of heart problem before. Testing has ruled out major structural heart problems, or serious heart attacks, etc.

 

[Sushi]

In fact, any activation now causes me to go into bigeminy, in which every other beat is PVC. This feels like someone kicking my chest from the inside repeatedly for hours on end.

There is a good attachment to a smartphone or Ipad that runs a 30 second ECG, gives a computer analysis and creates a PDF that you can send to a doctor. It is called Kardia and is on sale at the moment: https://store.alivecor.com/ I am thinking of getting one.

 

[Humanrights]

Human Rights the way they treat us all needs to be instegated.

No wants to help.

 

[Humanrights]

I have a handful of small heart "defects" on echo and electro, but sitting on the doctor's chair my heart rate is strong and "perfect" (like that of an athlete) and my blood pressure is "better than my doctor's I'm slightly jealous" so go figure...

Every. Damn. Time. *checks vitals* you are young and healthy, more than most, go out and enjoy life.

Grrrr.

You need a halter neck monitor.
Even then it does not pick stuff up.
I am electrically sensitive (ES.UK ) when the factory near my house air con system sets it off. Nothing shows up.
Let alone my Lyme.
Like Everything else the government does not tell you. It does not even igknowledge itself. All so called new tech
does not comply to EMC Law and human exposure to electromagnetic fields.

I think it's all in the eye of the beholder.
They don't see it if they don't want too.
My Lyme doc see's it my NHS doc does not. They only recognise when the damage is done then they say too late.

 

[valentinelynx]

There is a good attachment to a smartphone or Ipad that runs a 30 second ECG, gives a computer analysis and creates a PDF that you can send to a doctor. It is called Kardia and is on sale at the moment: https://store.alivecor.com/ I am thinking of getting one.

Yes, it is good. I have one & use it a lot to track my PVCs—trying to find an pattern or factors that affect their frequency. Being a doctor myself,

I don't bother sending the PDF to a doctor. By the way, you can record up to 5 minutes of EKG (choice of lengths in settings. To get it past the FDA they had to make it so you have to send the first EKG you record to a cardiologist for analysis. Once they approve it (I guess decide you aren't going to die immediately, then you are free to record EKGs at will...)

 

[valentinelynx]

As a child I would get bitten by flea my skin would blister and my heart would be effected by the poison.

If you got sick after flea bites, it seems more like that you have a Bartonella infection, which has many similar symptoms as Borrelia (Lyme disease). Of course, you can have both, if you have had both flea and tick bites. Bartonella is particularly commonly carried by domestic cats, so if you were bitten by fleas from cats, the risk of Bartonella is significant.

 

[PNR2008]

As some of you know I went to the ER seven months ago because of vertigo and vomiting. I have POTS and my bp was low so I thought a saline infusion was all I needed. When I was waiting I noticed an unusual pain in my jaw and informed the nurse immediately.

What was presented was a heart attack. I was sent to another Cleveland Clinic Hospital, given an angiogram (where dye was inserted at the wrist). It showed no blockage as in a regular heart attack but the left ventricle was enlarged three times normal and was beating slower than the rest of my heart.

It's called Takotsubo Syndrome ( Broken Heart Syndrome, Takotsubo Cardiomyopathy). It's not rare but poorly understood and the idea is it heals itself in 3 weeks to 3 months. Both "small heart" and Takotsubo came out of Japan, I don't know if they are related but both involve the LV and abnormal beats.

I was grossly fatigued, my bp was mostly 84/41 and I slept every moment they weren't doing something to me. Since then I have never had such fatigue, brain impairment and depression. I'm just getting over a sinus congestion and was bedridden for 10 days.

For most of the 27 years I have had ME/FM/POTS my heart was considered normal except at the very beginning when I had heart palputations and wore a monitor but about three years ago while doing a stress test it was discovered during a treadmill test for POTS that my heart rate never got up to the normal BPM and even more distressing that it didn't recover in the normal period of time.

Most of the people with TTS have immune problems, in my opinion and I believe that my own high titers of EBV, and HHV6 have caused damage to my heart. The troubling thing is some people have had TTS, have gotten it a second and even a third time. It is very dangerous at the beginning of symptoms until properly diagnosed.

An echo showed the heart was working properly at 3 weeks even though my heart is still enlarged.

 

[daisybell]

I get palpitations if I've overdone things. So this morning my heart suddenly jumped to 160 beats per minute and stayed like that for about 10 minutes. I sat quietly and waited and it then reverted to normal again. I don't seem to get any other symptoms and my bp stays normal. I presume this isn't pots?

 

[Valentijn]

I don't seem to get any other symptoms and my bp stays normal. I presume this isn't pots?

Usually if I get tachycardia from doing too much, it's in reaction to low oxygen saturation. Do you have a pulse oximeter? Also blood pressure values can look fairly normal in isolation, but still show a low pulse pressure (the difference between the systolic and diastolic measurements).

 

[Humanrights]

If you got sick after flea bites, it seems more like that you have a Bartonella infection, which has many similar symptoms as Borrelia (Lyme disease). Of course, you can have both, if you have had both flea and tick bites. Bartonella is particularly commonly carried by domestic cats, so if you were bitten by fleas from cats, the risk of Bartonella is significant.

I have unfortunately got both

 

[daisybell]

Usually if I get tachycardia from doing too much, it's in reaction to low oxygen saturation. Do you have a pulse oximeter? Also blood pressure values can look fairly normal in isolation, but still show a low pulse pressure (the difference between the systolic and diastolic measurements).

No I don't have a pulse oximeter.... I'll need to check my pulse pressure on the readings. What's considered low?
Its just a horrible feeling when your heart is pounding so fast!

 

[Valentijn]

I'll need to check my pulse pressure on the readings. What's considered low?

Normal when resting is 30-40. 25 and under can feel pretty crappy, though most blood pressure monitors start giving errors when it's that low, due to the pulse being too weak to detect consistently.

 

[Humanrights]

Usually if I get tachycardia from doing too much, it's in reaction to low oxygen saturation. Do you have a pulse oximeter? Also blood pressure values can look fairly normal in isolation, but still show a low pulse pressure (the difference between the systolic and diastolic measurements).

You know you can buy oxygen condensers to help with that.

 

[Valentijn]

You know you can buy oxygen condensers to help with that.

If I pace properly, it doesn't happen in the first place And if it does happen, then laying down for a while deals with it.

 

[daisybell]

Normal when resting is 30-40. 25 and under can feel pretty crappy, though most blood pressure monitors start giving errors when it's that low, due to the pulse being too weak to detect consistently.

122/94 and 136/94 were my readings yesterday - with a HR of 153 and 161 respectively.. so the first pulse pressure seems a bit low but the second one is ok, if I'm interpreting it right.

 

[Little Bluestem]

Why doesn't having a high heart rate cause PEM if using the leg and arm muscles does ?

I do get PEM from having a high heart rate. I use a pulse oximeter to monitor it.