Fast heart beat me : I was diagnosed with me in... - EDMESH

EDMESH

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Fast heart beat me

sumdum profile image
16 Replies

I was diagnosed with me in November and have noticed my rate is very high even At rest Does anyone else find this who suffers with me/cfs any advice thanks :)

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sumdum profile image
sumdum
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16 Replies
gadickson profile image
gadickson

Look in to POTS. It is often associated with ME. See potsuk.org/

sumdum profile image
sumdum in reply to gadickson

Thank you so much for saying pots uk. I have been diagnosed a year now with pots and had the best year in seven really crap ones with treatment all thanks to you, I had never heard of it till you said on here really appreciate Thanks agin 🤗

Sarahvit profile image
Sarahvit

Yes I found out shortly after I was diagnosed with fibromyalgia and CFS/ME that my heart rate was high. Walking around in the house it would go up to the 130’s resting was 80’s -90’s but as time went on it slowly came down to 90’s -100’s when walking and resting 70’s-80’s. Now laying down is in the 60’s. I was diagnosed back in 94. My heart rate returned to normal over last 23yrs.

sumdum profile image
sumdum in reply to Sarahvit

That sounds better thank you I have been worrying about cause it is really high when I am doing nothing but hopefully will settle down :)

Sarahvit profile image
Sarahvit in reply to sumdum

Sumdum I would still mention it to your doctor on your next visit but if you are on amitriptyline and your doctor tells you to stop taking it until your heart rate goes down. Be prepared to get very little sleep if that. I am speaking from experience I only got 45minutes of sleep that night. I was still working then so was able to do a lot of charting and care plans that night. Amitriptyline is one of those medications that you have to wean off of not stop cold turkey. So needless to say the following night I took one and slept that night so I just delt with the tachycardia. How fast is your heart rate running at during rest and activity?

sumdum profile image
sumdum in reply to Sarahvit

Reast it’s about 80 to 90 and activity it’s at 120 to 130 x

Sarahvit profile image
Sarahvit in reply to sumdum

Are you on amitriptyline? That was about what mine use to be. I just check my heart rate while resting here it was 66. When I first got sick just walking from the couch in the living room though the master bedroom to the bathroom 🚽and back in a single wide model home the distance wasn’t that far to make my heart rate to jump up into the 130’s.🤷🏼‍♀️ Well it is late so I need to go to bed. Goodnight 😴💤I’m sleepy so going to bed. 💤 hugs 🤗💕🦋

sumdum profile image
sumdum in reply to Sarahvit

Thank you and yer I have been on a very lose dose for my pain a hope you had a nice sleep :)

Sarahvit profile image
Sarahvit in reply to sumdum

You are welcome sumdum. Sorry I haven’t been around the last few days. Yes I slept 🛏 well for the most part. I hope you have a good weekend. 🤗💕🦋

sumdum profile image
sumdum in reply to Sarahvit

Thank you and you too x ☺️🌻

jinksycat profile image
jinksycat in reply to Sarahvit

Hello, just been reading these posts and I've been looking into pots for a few months, been struggling to be upright for any length of time for few years but not known why. My heart rate does go up quite a bit if I'm up 10 mins +. Got an each and 24hr tape appointment next week. Just wondering how you got diagnosed, don't want to get fobbed off at the appointment, any experience first hand would be welcome advice. Thanks x

Sarahvit profile image
Sarahvit in reply to jinksycat

I don’t have an official “diagnosis” for POTS but as far back in childhood I have always had episodes of standing up and things going black. I would just wait until everything comes back. This isn’t an every day thing it comes and goes so it is lick that funny noise your call makes but when the mechanic takes your car out for a drive the car doesn’t make the noise and he doesn’t see anything wrong with the car. So when I’ve been tested specifically for POTS nothing showed up. So it is definitely orthostatic hypotension. I only fainted once in 98 but did not hurt myself. It comes and goes in cycles. Since this has been a part of “normalcy” growing up I just learned to live with it. If things go black I just wait standing holding the wall and wait for the blood to get to my head then go on with what ever I was going to do. I’m sorry I couldn’t have been of better help. Have you had the tilt table test? My identical twin sister and I had the tilt table test as part of a fibromyalgia research study and she failed the test. I did fine with the test. I hope you are able to get the answers you need and right medical care. I guess the only advice would be persistent and get a 2nd, 3rd, or 4th or even 5th opinion if need be.

Mr_Igor profile image
Mr_Igor

Hi Sumdum,

Do you also feel hungry a lot? To me it really sounds like Hypoglycemia (low blood sugar). Try measuring your blood glucose level.

Chronicle Hypoglycemia won't go away after eating a candy. It usually take a diet and a couple of months for your body to regenerate.

I hope you beat this condition at some point!

never give up.

sumdum profile image
sumdum in reply to Mr_Igor

Thank you it’s hard but all keep going ;)

LillyLyle profile image
LillyLyle

I have this too. They're doing an echocardiogram on me next week. Though I am fairly sure it's just a side effect of ME-CFS, I want them to keep an eye on my heart because apparently it's common with "half-filling" and there's a hormone which regulates heart muscle contractions that people with ME-CFS are not producing enough of. There are many studies online, here is one: meresearch.org.uk/our-resea...

sumdum profile image
sumdum in reply to LillyLyle

Thank you x

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