Fatigue and exercise

[Darren1]

Hi all. I've been away from the forums for quite some time. I run 3-5 days a week and have HCM. I'm curious if others with HCM experience fatigue as the result of exercise. I'm also curious if this is normal fatigue or is exacerbated by HCM? 99% of the time I feel great after a run, 1% of the time I feel like I'm suffering from a sleep disorder because I am so tired and just want to nap.

As with many things with HCM, It's hard to tell what "normal" is. I know many of my non-HCM runner friends experience similar symptoms and I wonder if I am just blaming HCM for normal fatigue...

-Darren

[mbcube]

Re: Fatigue and exercise

Darren - I did respond to your other post, then found this one. Its important to understand that HCM is not normal. its not static and stays the same. it varies greatly based on what and when you eat, exercise, fluid levels, salt and other mineral levels. You've been around this site a while to grasp that concept. While we tend to always blame HCM for things - its not always the case. I quit running long before I DX, and know the joy (and soreness) it can bring.
We all have our good HCM days and our bad HCM days - I can't tell that this is HCM related, but given your excellent conditioning, septal size, It may be time to evaluate medication with a HCM expert at a COE (yeah, I can be a nag). I know for me, I feel 80% better now with surgery and medication. Some days its 95%, some days less than 50%. On those bad days Its usually because I've over-extended myself. I tend to add a little more of my Beta Blocker on those days and are usually back in the game the next day. Yeah - you are spot on when you said its hard to tell whats normal.

[mbcube]

Re: Fatigue and exercise

Darren - I did respond to your other post, then found this one. Its important to understand that HCM is not normal. its not static and stays the same. it varies greatly based on what and when you eat, exercise, fluid levels, salt and other mineral levels. You've been around this site a while to grasp that concept. While we tend to always blame HCM for things - its not always the case. I quit running long before I DX, and know the joy (and soreness) it can bring.
We all have our good HCM days and our bad HCM days - I can't tell that this is HCM related, but given your excellent conditioning, septal size, It may be time to evaluate medication with a HCM expert at a COE (yeah, I can be a nag). I know for me, I feel 80% better now with surgery and medication. Some days its 95%, some days less than 50%. On those bad days Its usually because I've over-extended myself. I tend to add a little more of my Beta Blocker on those days and are usually back in the game the next day. Yeah - you are spot on when you said its hard to tell whats normal.

[Redteamer]

Re: Fatigue and exercise

I agree with mbcube, it might be a good idea to get looked at. During the 18 years I've been symptomatic, maintaining a consistent exercise regimen has been a challenge and I've only recently connected that to my HCM as opposed to my own sloth. The real warning sign came when I went into Afib in 2011. 20/20 hindsight tells me that at that point I'd had a ventricular obstruction for a while at that point which caused back pressure into my Atrium causing it to enlarge and disrupt the electrical pathways. I've been in and out of Afib since until last week when I had it corrected during my myectomy.


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[angusjcampbell]

Re: Fatigue and exercise

Darren
The whole thing about exercise really messed me up, even long before my proper diagnosis of HOCM.

Why was it that I could skate (on rollerblades) 20 km in Central Park in New York, and then an hour later ride the subway for 20 minutes then just about pass out, with massive pain, halfway up the stairs leaving the station?

Why was it that I could be on vacation in Europe and walk all morning in a city, then climb hundreds of steps in the tower of a gothic cathedral, then have a light lunch of schnitzel and a beer, then get up and almost pass out in front of an oncoming trolley while just crossing the street?

Dr Mark Sherrid at St Luke's in NY put it all together for me when he diagnosed me with HOCM. It was all about the warm up. And about the carbs.

When I left home on West End to go to Central Park, I was navigating side streets and sidewalks carefully to get to the park. I was then warmed up. Then I could pin my ears back and take off at a brisk pace. Later, I was resting in a seat on the subway and suddenly got up to climb stairs and that triggered my obstruction.

On vacation in Europe I was walking neighborhoods gradually in the morning as we were sightseeing, so I was warmed up to climb the tower. Then when I sat for a while and consumed food - largely carbs- then got up suddenly to walk walk across the street on a mild incline, I was doomed.

When I went for an echo at Dr Sherrid's office, he directed me to go to the Greek diner across the street from the hospital and pig out on a big breakfast before the appointment. They caught the obstruction quite clearly.

My point in this long story is that exercise, diet, and timing can have a big effect on the daily lives of HCM patients. Then when you add medication regimens, the timing can get trickier - at least it did for me. Meds helped me a lot but I had to learn to time activities around their regimen.

Good luck with your diagnosis and treatment. Keep us posted.

[angusjcampbell]

Re: Fatigue and exercise

Darren
The whole thing about exercise really messed me up, even long before my proper diagnosis of HOCM.

Why was it that I could skate (on rollerblades) 20 km in Central Park in New York, and then an hour later ride the subway for 20 minutes then just about pass out, with massive pain, halfway up the stairs leaving the station?

Why was it that I could be on vacation in Europe and walk all morning in a city, then climb hundreds of steps in the tower of a gothic cathedral, then have a light lunch of schnitzel and a beer, then get up and almost pass out in front of an oncoming trolley while just crossing the street?

Dr Mark Sherrid at St Luke's in NY put it all together for me when he diagnosed me with HOCM. It was all about the warm up. And about the carbs.

When I left home on West End to go to Central Park, I was navigating side streets and sidewalks carefully to get to the park. I was then warmed up. Then I could pin my ears back and take off at a brisk pace. Later, I was resting in a seat on the subway and suddenly got up to climb stairs and that triggered my obstruction.

On vacation in Europe I was walking neighborhoods gradually in the morning as we were sightseeing, so I was warmed up to climb the tower. Then when I sat for a while and consumed food - largely carbs- then got up suddenly to walk walk across the street on a mild incline, I was doomed.

When I went for an echo at Dr Sherrid's office, he directed me to go to the Greek diner across the street from the hospital and pig out on a big breakfast before the appointment. They caught the obstruction quite clearly.

My point in this long story is that exercise, diet, and timing can have a big effect on the daily lives of HCM patients. Then when you add medication regimens, the timing can get trickier - at least it did for me. Meds helped me a lot but I had to learn to time activities around their regimen.

Good luck with your diagnosis and treatment. Keep us posted.

[rowland2010]

Re: Fatigue and exercise

Hi All
I would like to echo what everyone is saying this really is a condition that changes day to day,i to get good days where i can play short course golf perhaps 9 holes without any fatigue but the next day i am struggling after 2 holes,then their is the lethergy and tiredness,i have lost count of the times i have fallen asleep in the middle of the afternoon.
Recently i have been experimenting with my dose of Beta Blocker cutting a 10mg tablet into a quarter so 2.5 mg dose as i have heard that the side effects of Beta Blockers are lethargy and tiredness,i also wonder if anyone else struggles when they do not get a good nights sleep,sleep seems to be very important also food intake larger portions of food bring on symptoms for some time after consumption,all in all HCM seems a very difficult condition to manage.all the best Dave.

[rowland2010]

Re: Fatigue and exercise

Hi All
I would like to echo what everyone is saying this really is a condition that changes day to day,i to get good days where i can play short course golf perhaps 9 holes without any fatigue but the next day i am struggling after 2 holes,then their is the lethergy and tiredness,i have lost count of the times i have fallen asleep in the middle of the afternoon.
Recently i have been experimenting with my dose of Beta Blocker cutting a 10mg tablet into a quarter so 2.5 mg dose as i have heard that the side effects of Beta Blockers are lethargy and tiredness,i also wonder if anyone else struggles when they do not get a good nights sleep,sleep seems to be very important also food intake larger portions of food bring on symptoms for some time after consumption,all in all HCM seems a very difficult condition to manage.all the best Dave.

[gfox42]

Re: Fatigue and exercise

Rowland2010, I hope you're doing this in consultation with your doctor. If experimentation with dosage is needed, doesn't it seem wise to have your doc weighing in on how much of a dose will still be effective, and on how long you should wait before trying a different dose? The other reason to consult may or may not apply here - some pills aren't meant to be cut up, and half a pill won't be the same as the same pill made with half the dose.

Gordon

[gfox42]

Re: Fatigue and exercise

Rowland2010, I hope you're doing this in consultation with your doctor. If experimentation with dosage is needed, doesn't it seem wise to have your doc weighing in on how much of a dose will still be effective, and on how long you should wait before trying a different dose? The other reason to consult may or may not apply here - some pills aren't meant to be cut up, and half a pill won't be the same as the same pill made with half the dose.

Gordon

[JillC]

Re: Fatigue and exercise

Dave,
I personally have a lot of trouble with fatigue and beta blockers and at this time I only take a calcium channel blocker. HOWEVER,
experimenting on your own changing drug dosages without MD supervision is not a good idea.
There is a protocol for weaning off beta blockers that prevents rebound arrhythmias...Please talk to your cardiologist.
He may have another medication in mind for you.
Also, though after meal symptoms are common in HCM , they will be worse if you are not properly medicated to to decrease the stiffness in your left ventricle. So even if your experiment seems to be helping one symptom it could be increasing other symptoms. Please check in with your cardiologist for your own safety.

[rowland2010]

Re: Fatigue and exercise

Gordon,Jill
Your quite right i am taking a risk i do get it about cutting up meds perhaps not such a great idea but seeing a doctor over here involves the National health service and i am not booked in to see my Cardiologist until a week before Xmas ,also their is the cost i have to pay for every prescribed med i use, i am on minimum wage and it is over £8 a item thats nearly $14 US dollars ,cutting them up saves money and if anything goes wrong at least Accident & emergency at my local hospital is free. Dave

[mbcube]

Re: Fatigue and exercise

Ah yes, NHS - "Accident & emergency at my local hospital is free" That is, if you survive.
Check with local associations and charities for assistance. Also - Most hospitals (in the US) have Social Workers who are trained to find those resources, check in with them.
Wondering if the Beta Blocker manufacturer has an assistance program. What I'm getting at is, wishing you didn't have to stubble and hoping for a solution soon!

[mbcube]

Re: Fatigue and exercise

Ah yes, NHS - "Accident & emergency at my local hospital is free" That is, if you survive.
Check with local associations and charities for assistance. Also - Most hospitals (in the US) have Social Workers who are trained to find those resources, check in with them.
Wondering if the Beta Blocker manufacturer has an assistance program. What I'm getting at is, wishing you didn't have to struggle and hoping for a solution soon!

[Darren1]

Re: Fatigue and exercise

Managed govt. health care *sigh*. Sorry to hear about your difficulties and fearful we may end up with similar issues here in the States.