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  • Fatigue?

    [Fatigue?]

    Author: greta (---.customer.alter)

    Date: 09-16-02 12:59

    hi all,

    i'm new to this board. i am 31 (almost 32) and have hcm and my septum has been thickening at a rate of 1 centimeter per year. i saw dr. sherrid last spring, and i'll be seeing him every year from here on out! oh, lucky me. (no offense to him...)

    the question i have for all of you hcm gurus is about fatigue. over the past couple of months, i have been experiencing a great deal of fatigue. i am working out, eating right, and i just can't seem to shake it. does anybody else have this problem?

    thanks,

    greta

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    [Re: Fatigue?]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 09-16-02 13:12

    Dear Greta,

    You are soo not alone here with fatigue! First of all, I'm guessing you are on a beta-blocker (yes?) and those can make you tired. You can talk to Dr. Sherrid about splitting your dose or trying a different "model" (there are lots of bbs and each one is a little different and you may do better on another one).

    Second, your heart is working harder than it wants to and this will tire you out faster. Imagine you are designed to run on four cylinders and you only have 2 working at full tilt. You are just going to move slower.

    I'm 33 and in Chicago --where are you?

    S

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    [Re: Fatigue?]

    Author: greta (---.customer.alter)

    Date: 09-16-02 13:30

    hi sarah,

    thank you so much for your response...

    i was on a bb for a short time, but it didn't seem to make a big difference in how i was feeling--so, i'm not taking them right now. dr. sherrid encouraged me to take them, but did not insist.

    it's just good to hear that i'm not crazy (or lazy)! i'm too young for mandatory afternoon naps.

    i live on long island, ny.

    thanks again for your input--much appreciated!

    greta

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    [Re: Fatigue?]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 09-16-02 14:29

    Dear Greta,

    If your heart rate is over 80 and/or irregular, that will really slow you down and should be medicated to keep it down ---so you should be paying attention to what your heart is doing in between doctor visits.

    take care and you are in good hands,

    Sarah

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    [Re: Fatigue?]

    Author: Matt (---.disney.com)

    Date: 09-16-02 15:07

    Hi Greta!!!

    I'm glad you found this board. Welcome. It is a GREAT source of information and inspiration.

    It seems like it's been too long since we've seen each other. Say "hi" to everyone up north. Hope you can figure out your meds "problem"

    Love, your cousin, Matt

    P.S. but being in our family, you're probably still "crazy" anyway.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Mary Catania (---.proxy.aol.com)

    Date: 09-16-02 22:13

    Dear Greta,

    Yes, the HCM does make us all feel tired. I'm on Toprol XL 50mg and I'm always feeling tired from that. I find that if I give in to it, I'll fall asleep sitting on the couch, but if I just get up and start doing something, then I'll start to feel better.

    I also live in LI...in Holbrook to be exact (exit 61 off LIE). What part of the Island are you from?

    I see Dr. Sherrid regularly. I had an ICD implanted 6 wks. ago and am doing well with it.

    Hang in there,

    Mary

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Mary (---.wi.rr.com)

    Date: 09-17-02 08:12

    Seems like all I ever want to do is sleep! Yesterday after getting the kids off to school I fell back to sleep and stayed like that til time to pick them up again. So much for housework.

    Mary

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    [Re: Fatigue?]

    Author: greta (---.customer.alter)

    Date: 09-17-02 08:20

    WOW, hi matt!!! didn't expect to find someone i know here...especially a member of our crazy family.

    and, don't i feel silly complaining about fatigue after all you've been through...i'm glad to hear that you are feeling better. you are thought of often. hi to everybody down there. big hug to your mom especially.

    and mary, i live in miller place and work in holtsville (for now). we are neighbors! i was on toprol, but stopped taking it. i will definitely fall asleep while sitting on the couch--even without the meds. i try to keep moving during the day to avoid just that. thank you for your response--even though i'm new to this board, it's clear that people are very supportive. take care of yourself.

    great day,

    greta

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Matt (---.disney.com)

    Date: 09-18-02 00:20

    Greta,

    Don't every feel silly about complaining on this board, and especially to me. We are all going through very similar, and yet sometimes quite different experiences. This disease affects no two of us in exactly the same way, but we do share many of the wonderful symptoms. Woo hoo! This is one reason it's always so hard for doctors to label us.

    Please call Dr. Sherrid and make an appointment ASAP. I'd say that you probably need an ICD and I would also guess that you have to do some work on your meds. Do you have Obstructive HCM? Dr. Sherrid is one of the best specialists, so please call him soon.

    Take care of yourself. I know you have a bright future ahead of you, and you can control this problem.

    Love, Matt

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: robin (---.tnt4.winston-salem.nc.da.uu.net)

    Date: 09-18-02 04:53

    Glad to see your response,

    I am also on Toprol right now. new to this HCM illness.

    I am on 25 mg.

    For the first day or so I experienced fatigue -- out like a light but I have found my fatugue level lessening over the last week.

    I have found that I feel blah when I sit around but if I am moving around I am much better.

    I just found out about my heart condition 2 weeks ago and will go back to my cardiologist on the 25th. He indicated that a ICD may be in my future.

    I am of course, curious about the procedure, life expectancy,e tc.

    Any light you can shed would be appreciated.

    thanks,

    robin

    winston-salem, NC

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 09-18-02 11:23

    WOW ..wait a minute here... Matt and Grete are cousins... I did not know that!

    How cool now we have had mother and daughter and cousins meet up on the board!

    Anyway - -Grete Fatigue is part of the "fun" of having HCM. It is one of the most common complaints I hear (and I hear a great deal... nearly 1800 families now!).

    Talk to your doctor and see if he can adjust your medication.

    Best to all!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 09-18-02 12:24

    Dear Robin,

    Please read the old threads here on ICDs to get more info on it and you can also call Lisa as she has one. Most HCMers live full life spans and when an ICD is placed by a specialist (particularly an HCM recommended one) it is pretty low risk and recovery time is a couple weeks with some limits on activity for a few more weeks after that.

    take care,

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Dora J (---.proxy.aol.com)

    Date: 09-20-02 16:40

    Hi all,

    Just a quick question on the matter of being fatique. I mentioned to my husband that I have been very tired and having a hard time keeping my eyes open the last couple days. And I told him I felt it was due to over doing it. He seems to think if I would take vitamins I wouldn't have the problem. I on the other hand don't care to take vitamins because they make me hungury and I really don't need to gain weight as I am over a 100 lbs over weight already and am trying to lose some of it although it is very hard due too not being able to do much. I also take Toprol XL 100mg in the morning and 50mg in the evening. I have been feeling a lot better until this week but then last Thursday, my sister and her son, my neice and her boyfriend, my self and my two boys went to Kentucky to see my sister because she again has cancer after having a 8lb. tumor remove last August on her leg. She now has a tumor around her hip bone and one large one on her lungs plus a dozen small one on her lungs. Friday my neice's boyfriend was riding one of my sisters horses and fell off and broke his back. To make a long story short we brought him back to Delaware with us without a brace or anything. Then Monday night I spend all night in the emergancy room with them. We did not get good services in Kentucky. First hospital said no broken bones and was going to send him home. I told them "no way" he couldn't even get up or sit so they took him to a hospital 2 hours away. There they said he had one broken bone. When we got him and they did x-rays again there were three broken bones and possible a crushed one. What a weekend but at least I got to see my sister.

    Sorry about the long message.

    Dora

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 09-20-02 17:54

    Dora,

    (By the way, that's my mom's name too.)

    I am so sorry for your last week. I don't know what I can do or say to make anything better for you, but know that I will say a prayer for your entire family.

    Reenie Smith

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Dolly W (---.proxy.aol.com)

    Date: 09-20-02 23:42

    Hi Dora,

    Sorry about your experience this week. I must tell you, I take vitamins and they don't make me feel any better. However, I have tried something new this week and found that it DOES make me feel better! That is following a hypoglycemic diet. I am overweight too (more pounds than I care to mention here) and have high insulin levels (hyperinsulinemia/insulin resistance) which causes my blood sugar to go down. I feel like poop all day. But, I started this diet this week and have lost 3# and have felt much better, not to mention not craving sweets! That's a miracle all by itself! It's NOT a crash diet, it includes all of the food groups, and you basically eat small meals six times a day. If you're interested, email me and I will send you a copy of the diet. It does take some discipline, but it's easier than anything I've tried so far.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 09-21-02 01:41

    Dear Dora,

    I would remind your husband that vitamins can't make your heart become normal. I would also hand him a copy of the HCMAs Patient's & Family's Guide to HCM so he can have a better understanding of what you are going through.

    I'm sorry you had such a horrible weekend. hang in there,

    big hug,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Dora J (---.proxy.aol.com)

    Date: 09-21-02 21:36

    Hi,

    Reenie... It is strange to hear of somebody else being named Dora. You don't hear it very often.

    Thank you all for responding. I am hanging in there. I did feel better today, but I know from going through this disease for almost ten years that when I get too tired it takes almost a week or more to get back to feeling better. I also learned that if I do something like ride my bike or bounce on the trampoline, even though it takes all my energy, I feel a lot better.

    I talked to my sister's son last night and he said my sisters is feel a lot better since she came back home. On Sunday when we were on our way home we got a call that they had to take her back in the hospital as she started running a fever, her white blood count was 1700 and a few other things were going on. Anyway they got her blood count back up and she is doing a lot better.

    Thanks again,

    Dora

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fatigue?]

    Author: Annette (---.neave01.pa.comcast.net)

    Date: 09-23-02 22:02

    Dear Dolly,

    I read your message about the diet. Could you please send me a copy also?

    I'd appreciate it very much. Thanks,

    Annette
    NOTE: This is a post from the previous forum message board.

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