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Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise. Find out more about Darren1
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  • Fatigue?

    Ok, It's been a while since my last post. I've been swamped at work (spent almost 3 months in Greece for business) and swamped at home as well. I have however been reading the posts periodically and enjoying them.

    I wanted to ask how many HCMrs experience fatigue? I often find myself fatigued, but the strange thing is that it isn't usually during or after exercise.. I also find that I hit a "limit" where my body basically says "ok.. I'm going to crash" and I become extremely tired. Alot of these symptoms may be stress related, and not HCM at all.. I'm just curious what everyone else experiences and how to differentiate "normal" fatigue from abnormal fatigue. Being a "type A" personality, I do tend to run myself down and don't know that I can blame HCM for that. Thanks, Darren

  • #2
    Hi Darren

    Welcome back to our supportive community.

    I usually get fatique around 2:30-3:00 p.m. I get to the point that if I put my head back against my chair, I will fall asleep.

    Like many others, there are nights that I just can't sleep and don't go to bed until 11:30 p.m. - 12:30 a.m.

    I do work 8 hrs a day, 5 days a week and sometimes when the weekend comes, I can't find the energy to do much housework. I take afternoon naps on the weekends, too.

    I blame most of my restlessness on stress. Who knows?

    If you continue to feel fatiqued, maybe you should contact your doctor. It may be stress and he/she could prescribe something to help you.

    Take care
    Esther

    Comment


    • #3
      Hi Folks,

      I can relate to everything you just said. If I have something to keep me busy I can go all day. If I stop in the middle of the day to sit down and watch a little tv it's boom-boom out go the lights and i'll sleep for an hour or two. If I stay busy i'm fine. I always said it was because I work early hours and get up at 4:00 am every day. After I wake from a nap I usually feel tired the rest of the day. I guess fatigue could have something to do with it...


      Tigger1
      " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

      Comment


      • #4
        Nice to see you!

        It is a common situation that those with HCM face. Are you taking any medication? This will help me address your question better.

        Take care,
        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

        Comment


        • #5
          All sounds very familiar to me . There are nights that I do not sleep a wink and feel it is stress related and when my heart is stressed several days prior , then wham it seems to effect me as if I have had caffeine.

          Through most afternoons I seem to hit a wall and about 4 times a week if I do not lie down , I feel that I will just lose consciousness. So I am forced to nap on those times. My Bp and pulse stay strong but , it just seems to hit me this way. I have tried to stay busy and get through it , it doesn't seem to work for me , only gets worse and then my color gets pale.

          It has been this way for me for years even before myectomy and also before high doses of beta blocker. I have noticed that during those times I am a little more winded and feel my abdomen is more puffed up and hard. Lying down seems to reverse this. When I worked , I would come home at lunch time and fall right to sleep and feel like crap the rest of the day.

          With Hcm , I have found that as soon as my heart is awake and pumping well and the beta is effective , I have to get in the bulk of an activity . Like groceries , light shopping and even meal prep for dinner. If I do not plan well , I do not reach any of my now adjusted "little life" goals.

          I would suggest planning as a way to get done what has to be accomplished. I think we share many common difficulties with living life with HCM . I have tried to look at it as what is a minor activity for someone with a normal heart can often be a major event for someone with an HCM heart. Life adjustments help and living real . As a born control freek I am still able to control by planning ahead and therefor live life , just differently.

          Be well .

          Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            Darren,

            Yep same thing here. I start to crash around 4 and by the time I get home, which is around 6 I'm ready to take a nap. (Which I do some times).
            But then around 8 I'm waking up again and am good to go till 11 or 12, by which time I need to go to bed as I have to get up at 6:30 in the AM.

            I have tried a couple of things but have not found the magic solution yet.
            One thing I know is that if I get 8 hours of sleep a night and if I eat a very light lunch that that seems to do the trick (but not always). The 8 hours of sleep is the kicker for me though, having a wife that is a night owl it's hard to go to bed yourself you know.

            I remember before surgery it was really really bad and I had to map almost every day, then 3 months after I was a lot better with no napping at all, but now it seems to be going down hill again.

            Gotta love this HCM thing...
            Fred

            Comment


            • #7
              Darren,

              I'm dealing with exactly the same thing right now, and have also wondered if anyone else feels the same.

              I work in school kitchens, and for the last 5 months, I've been the manager of a high school kitchen, just moved there last Aug. I have realized, just in the last two weeks, that it is just too much for me.

              I go to work at 6:30 am, and by 12:00, I'm done. I feel fatigued, exhausted, and, the only way I can describe it, is "weak". Like I have no blood in my arms and legs, or something. I just can't "give everything" like I used to. I cannot give the job what I should give it. My shift is 7 1/2 hours, but I feel like I just don't have it in me.

              And so, I have stepped down, to a 5 hour job... "just" a workeer bee. (So my boss says). I feel that I have disappointed many people, professionally. But I know that I have to focus on my health.

              I have been very forthright with my employers about the situation, and I hope this won't come back and bite me in the butt.

              Anyway, I'm very sad about the whole thing. I had lots of great ideas I wanted to bring to this new job, but I just don't have the energy to give it.

              Sorry for the long post, but I guess I needed to vent to people who would understand.

              Good luck to you, Darren.

              Debbie

              Comment


              • #8
                Guys i know the feeling i get so tired so easily anymore, just like today i went to the doctor and then stopped off at the grocery store and while walking in from a handicap parking spot my legs felt like they were going to ache to death and as far as the nap thing goes i do take naps if i don't get my sleep at night but for the most part i try to stay awake during the day even if i have to lay down during the day and watch tv i try to stay awake

                Shirley

                PS you know i have complained for years about my arms and legs aching when i walk and the docs would tell me i was out of shape go figure, it really would get me very angry because i considered myself a fit person and i also swelled for years and the doc said well shirley you are getting older, anyway i do know what you guys mean
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Fatigue..

                  Lisa, I'm not on any meds so I doubt that is a factor...

                  All, Thanks for the feedback. I wish there was more information for us in general.

                  -Darren

                  Comment


                  • #10
                    I did not think you were - but my memory can play tricks on me!

                    I would suggest you see your cardiologist and get a complete work up. I am not sure that it is your HCM or if there may be something else going on (a simple as getting a little older as complicated as a change in your HCM).

                    I know you have a little one at home and want to stay in top shape for yourself and your family. Please do not ignore the change.

                    Take care and let us know,
                    Lisa
                    Knowledge is power ... Stay informed!
                    YOU can make a difference - all you have to do is try!

                    Dx age 12 current age 46 and counting!
                    lost: 5 family members to HCM (SCD, Stroke, CHF)
                    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                    Therapy - ICD (implanted 97, 01, 04 and 11, medication
                    Currently not obstructed
                    Complications - unnecessary pacemaker and stroke (unrelated to each other)

                    Comment


                    • #11
                      Hi Darren and everyone

                      Darren, I am not on any meds either.
                      (I know that I am supposed to be, I have a prescription bottle of Verapamil filled and it is sitting in my medicine cabinet in my kitchen, but I have not taken them yet. I will eventually.)

                      Anyway, I get tired everyday. Some days I get completely exhaused. And yes I will crash too. So for me it is the HOCM.

                      I have seen 3 different cardiologists in the past 4 months and they have all said that this is normal for my condition.
                      49 yrs. old
                      Diagnosed at 31.
                      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                      My brother passed away suddenly at 34 yrs old from HCM.
                      2 teenage children, ages 17 and 15.

                      Comment


                      • #12
                        eileen why are you not taking your verapamil.That seems like a big mistake to me.especially with the symptoms you have. dont fool around with this the verapamil will help.please dont take offense. mike ob
                        One day at a time.

                        Comment


                        • #13
                          Mike , I believe in a more recent post ; can't recall which one though, Eileen reported she has been taking it for 10 days now. She is not feeling full effect from it and has had some persistant rhythm problems.

                          Important to note , most medications take several weeks to build up a level in the blood stream that can effect a positive outcome.

                          Be well.

                          Pam
                          Dx @ 47 with HOCM & HF:11/00
                          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                          Lead failure,replaced 12/06.
                          SF lead recall:07,extracted leads and new device 2012
                          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                          Genetic mutation 4/09, mother(d), brother, son, gene+
                          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                          Comment


                          • #14
                            Re: Fatigue?

                            I was diagnosed with HCM over over 6 years ago and had a septal myectomy at Mayo's in April 2003. I concur with everyone here about the fatigue.

                            I work over 8 hours four days a week and a half day one day. I would love to exercise more but by the time I get home from work, I'm ready to crash. And then there are days (it sneaks up on me) where I just can't function and the only thing I can do is rest. And, yes, maybe it is attributable to stress from work but before I was diagnosed, I could do lots of activities.

                            My frustration is at work when people who don't have HCM don't understand what I may be going through. I don't think anyone understands except those who have HCM and I really appreciate this discussion board. I certainly don't feel alone when I read some of the posts.

                            Comment

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