Has anyone with severe ME/CFS(for any level of me/cfs) undergone a cardiology dobutamine stress echo test?

[mission impossible]

Hi all,

Has anyone with severe ME/CFS(for any level of me/cfs) undergone a cardiology dobutamine stress echo test?

Yes I have a lot of cardiology symptoms and they want to do this test because I can't do the exercise test for obvious reasons with severe me/CFS.

So they suggested this dobutamine stress test instead.
However, it is going to stress the heart not the rest of the body for about 15 minutes intensely only post I can find on here one person that's done it said "it's like as if your heart is running up hill for 10 to 12 minutes"
I guess the question is if that is the case and you have severe mecfs is it advisable to risk during the test could it permanently worse than your mecfs (worst case scenario).
If there is a big risk of that I would probably cancel the test which is in 6 days time, I already got worse from having cervical operation in my head to place a stent about 6 months ago and I cannot really feasibly go downhill anymore than I already am that's the problem.

So . just trying to assess if it could feasibly make you worse or not really(obviously the other option the exercise stress test which is in fact cpet same as cpet 1 and 2 used in cardiopulmonary mecfs testing obviously that's going to make me worse because the whole idea is to induce PEM

But will the dobutamine just stress the heart and have a benign effect on mecfs or is it pretty much the same as doing the exercise as it relates to severe me/CFS.

Was high paying maybe someone had done this or you might have knowledge of the mechanics of meCFS better than I do and how a stress load on the heart might affect mecfs.

I've got six days to make my mind up whether to go ahead or cancel.

Any thoughts anyone?

Regards,

Tim

 

[Mary]

Hi @mission impossible - I had something which was called a chemical cardiac stress test maybe 13 or 14 years ago and had no long lasting effects. It did feel a little strange while it was ongoing but that was it. I never knew the technical name of the test but I'm assuming it's the same one you're contemplating.

However, I'm sure you know that just because I tolerated it okay doesn't mean you will unfortunately. We're all different! Actually I've been at about the same level of functioning for many years now. I had to have abdominal surgery a little over 2 years ago and was able to recover with no lasting downgrade in my baseline. Many people are not that fortunate.

Hopefully others can weigh in for you here -

btw, the I passed the test just fine - I had a doctor who was trying to cover all the obvious bases for my ME/CFS symptoms. I almost would have preferred that something show up --

ETA: I didn't have a lot of cardiac symptoms, just the usual PEM, lack of endurance etc. - I'm considered to have moderate ME/CFS, able to do 4 hours of light activity a day

 

[SWAlexander]

After collapsing just three minutes into a treadmill test, I underwent a chemical cardiac stress test in 2009 and 2012 due to worsening muscle weakness prior to back surgery. Although the results showed no heart issues, the skeletal and leg muscle weakness continued to progress for another two weeks.

This was reviewed again in 2016 as Postoperative pain management was discussed - back surgery in 2016.
Anesthetic Risks: General - risks including but not limited to: Sore throat, Lip or dental injury, Nausea and vomiting, Drug reactions, Emergence
delirium, Transfusion reactions, Periop respiratory complications, Aspiration, Pneumonia, Difficult intubation, Prolonged neuromuscular effect,.....

 

[Mary]

But will the dobutamine just stress the heart and have a benign effect on mecfs or is it pretty much the same as doing the exercise as it relates to severe me/CFS.

I just looked at your post more carefully - the chemical stress test did not induce PEM for me. It just stressed my heart. If I had done a regular treadmill test, that very likely would have caused PEM for me.

 

[SWAlexander]

But will the dobutamine just stress the heart

Maybe check with a cardiologist to be sure, but from what I understand, dobutamine increases blood pressure mainly by boosting cardiac output (heart rate) for about 2 minutes.
Dobutamine is not dopamine, this would raises blood pressure by constricting peripheral blood vessels.

 

[LaurelW]

I had one of those last year. The doctors were trying to figure out why I had premature atrial contractions. I did get PEM from the test, but it wasn't near as bad as if I had done a treadmill test. It was really good to know that my arteries were absolutely clear. I ended up having a cardiac ablation for the PAC's and now they are completely gone.

 

[Zebra]

I've got six days to make my mind up whether to go ahead or cancel.

I underwent this test at the very, very beginning of what became ME/CFS, when I was crazy symptomatic, but the overwhelming fatigue had not set in yet.

So, in my case, I could tolerate it, but this was months before I experienced CFS-level fatigue and PEM.

I highlighted a portion of your post because, I'm wondering if there could be a third option?

Could you postpone the test until a next year?

And/or whenever you feel like you've recovered from your surgery and returned to your baseline?

I currently have a stack of orders tests and referrals, and I've gone from being the "perfect" patient to flat out telling my physicians, I'm sorry, I understand this is important, but I'm physically not able to leave my home and/or tolerate that test right now. (It's taken me 9 years to get to that point!)

 

[SWAlexander]

I currently have a stack of orders tests and referrals, and I've gone from being the "perfect" patient to flat out telling my physicians, I'm sorry, I understand this is important, but I'm physically not able to leave my home and/or tolerate that test right now. (It's taken me 9 years to get to that point!)

Very straightforward: since there's no cure after the tests, what's the rush?

As I’ve come to realize, postponing the appointment doesn’t guarantee you’ll have more energy when the day finally comes.

 

[I am sick]

Hi all,

Has anyone with severe ME/CFS(for any level of me/cfs) undergone a cardiology dobutamine stress echo test?

Yes I have a lot of cardiology symptoms and they want to do this test because I can't do the exercise test for obvious reasons with severe me/CFS.

So they suggested this dobutamine stress test instead.
However, it is going to stress the heart not the rest of the body for about 15 minutes intensely only post I can find on here one person that's done it said "it's like as if your heart is running up hill for 10 to 12 minutes"
I guess the question is if that is the case and you have severe mecfs is it advisable to risk during the test could it permanently worse than your mecfs (worst case scenario).
If there is a big risk of that I would probably cancel the test which is in 6 days time, I already got worse from having cervical operation in my head to place a stent about 6 months ago and I cannot really feasibly go downhill anymore than I already am that's the problem.

So . just trying to assess if it could feasibly make you worse or not really(obviously the other option the exercise stress test which is in fact cpet same as cpet 1 and 2 used in cardiopulmonary mecfs testing obviously that's going to make me worse because the whole idea is to induce PEM

But will the dobutamine just stress the heart and have a benign effect on mecfs or is it pretty much the same as doing the exercise as it relates to severe me/CFS.

Was high paying maybe someone had done this or you might have knowledge of the mechanics of meCFS better than I do and how a stress load on the heart might affect mecfs.

I've got six days to make my mind up whether to go ahead or cancel.

Any thoughts anyone?

Regards,

Tim

Hi
I have had chemically induced stress done several times and I have possible Me/ Cfs or long covid and it went well ! Without any lasting issues or new symptons afterwards.

On the four I have had done they did not induce my heart rate that much, I could feel my heart rate increase , but nothing like I get when I walk a short distance.
The tech gives low doses slowly until it is enough to get the needed recordings then they are done.

Just wear a shirt you dont care much about because you cant get all the gell off with a rag and it has damage a few shirts! They have never offered me a gown to put on.

 

[mission impossible]

Hi
I have had chemically induced stress done several times and I have possible Me/ Cfs or long covid and it went well ! Without any lasting issues or new symptons afterwards.

On the four I have had done they did not induce my heart rate that much, I could feel my heart rate increase , but nothing like I get when I walk a short distance.
The tech gives low doses slowly until it is enough to get the needed recordings then they are done.

Just wear a shirt you dont care much about because you cant get all the gell off with a rag and it has damage a few shirts! They have never offered me a gown to put on.

Good info and advice thank you very much that's really helpful

 

[mission impossible]

Hi everyone,

Thank you so much for your applies I know it's quite hard to read and send messages with our condition so I really appreciate it

So based on all the messages here on the whole it seems that it's not as bad doing the chemical stress test as the exercise stress test certainly.

It seems to me like it might well cause some PEM but it won't be severe (I hope).

However that said I did have an operation where I had a stent put in my head last November and I never fully recovered from that back to baseline still haven't so not sure really yet.

Is it worth the risk? generally if there's a risk it goes against me I found an if possible don't take the risk so it could well backfire on me but based on your comments here it doesn't sound too bad.

have a few more days to think aboit it, undecided yet

The heart symptoms I have btw are palpitations or irregular heartbeats, dizziness and out of breath when I try and do any activity and pain in the heart area.

It's either when I try and do some physical task like walking around the room or it is bad late at night when lying down trying to sleep where my BP goes really low and I get all of the symptoms above (except for the out of breath bit) + dizzy weird feeling in head+ bad headache that stops you being able to go to sleep this usually goes on for several hours.

As mentioned previously I did have an operation in November and all of these symptoms started one month after that.
But MeCFS got worse from the operation still is, so I think possibly what has happened is one of two things

Either the two blood thinners I was put on now I'm on one caused the heart problems (prasugrel and aspirin)
Or because I have severe mecfs and it's gotten worse I don't have a lot left to play with here so it's possible that my system just isn't working enough to even have a properly functioning heart anymore. I mean if it affects all your muscles and you haven't got the energy to power all your muscles and the heart never gets a break I do wonder.
I remember Dr myhill saying that you can get cardiomyopathy if your mecfs gets really bad.

So if it is the latter and it's caused by mecfs just getting too severe affecting the muscle function including the heart then there's probably not much they can do about it anyway but trouble is I don't know which it is.

I mean at this stage they don't seem to know what is causing it the reason they want to do the test is basically because I have a lot of risk factors i.e high cholesterol diabetes but I've had that for a decade so I don't think it's that whatever it is it started a month after I had the operation suddenly so it's either the blood thinners or mecfs got on worse in my humble opinion

 

[mission impossible]

Just to add to the last post

Maybe I should ask if anybody else has got similar heart symptoms problems on here

We might have a better understanding as a community of patient experts of what's really going on here then the cardiology team I'm about to see

 

[SWAlexander]

Would you consider a 24-hour EKG?
I had one. Results:

 

[I am sick]

Hi
I have had chemically induced stress done several times and I have possible Me/ Cfs or long covid and it went well ! Without any lasting issues or new symptons afterwards.

On the four I have had done they did not induce my heart rate that much, I could feel my heart rate increase , but nothing like I get when I walk a short distance.
The tech gives low doses slowly until it is enough to get the needed recordings then they are done.

Just wear a shirt you dont care much about because you cant get all the gell off with a rag and it has damage a few shirts! They have never offered me a gown to put on.

Good info and advice thank you very much that's really helpful

Hi
I am sure some places may do it differently.
But with my discussion with the tech they only inject enough to get the required results.
They dont give a full dose where you think and feel like you just ran a Marathon
Recently while I was in recovery after a small stroke they done another heart ultrasound and They did a test I have never had done.
They mixed a chemical and injected some in my Iv to see if my left side had good communication with my right side on my heart.

 

[I am sick]

Hi everyone,

Thank you so much for your applies I know it's quite hard to read and send messages with our condition so I really appreciate it

So based on all the messages here on the whole it seems that it's not as bad doing the chemical stress test as the exercise stress test certainly.

It seems to me like it might well cause some PEM but it won't be severe (I hope).

However that said I did have an operation where I had a stent put in my head last November and I never fully recovered from that back to baseline still haven't so not sure really yet.

Is it worth the risk? generally if there's a risk it goes against me I found an if possible don't take the risk so it could well backfire on me but based on your comments here it doesn't sound too bad.

have a few more days to think aboit it, undecided yet

The heart symptoms I have btw are palpitations or irregular heartbeats, dizziness and out of breath when I try and do any activity and pain in the heart area.

It's either when I try and do some physical task like walking around the room or it is bad late at night when lying down trying to sleep where my BP goes really low and I get all of the symptoms above (except for the out of breath bit) + dizzy weird feeling in head+ bad headache that stops you being able to go to sleep this usually goes on for several hours.

As mentioned previously I did have an operation in November and all of these symptoms started one month after that.
But MeCFS got worse from the operation still is, so I think possibly what has happened is one of two things

Either the two blood thinners I was put on now I'm on one caused the heart problems (prasugrel and aspirin)
Or because I have severe mecfs and it's gotten worse I don't have a lot left to play with here so it's possible that my system just isn't working enough to even have a properly functioning heart anymore. I mean if it affects all your muscles and you haven't got the energy to power all your muscles and the heart never gets a break I do wonder.
I remember Dr myhill saying that you can get cardiomyopathy if your mecfs gets really bad.

So if it is the latter and it's caused by mecfs just getting too severe affecting the muscle function including the heart then there's probably not much they can do about it anyway but trouble is I don't know which it is.

I mean at this stage they don't seem to know what is causing it the reason they want to do the test is basically because I have a lot of risk factors i.e high cholesterol diabetes but I've had that for a decade so I don't think it's that whatever it is it started a month after I had the operation suddenly so it's either the blood thinners or mecfs got on worse in my humble opinion

Quick question?
Are you taking any immune biologics?

 

[mission impossible]

Would you consider a 24-hour EKG?
I had one. Results:
View attachment 56122

Had a 24 hour ecg already, didn't show anything but then I didn't have any symptoms during that 24 hours unfortunately.
They want to do a 7 day one now in addition to the chemical stress test

 

[mission impossible]

Hi
I am sure some places may do it differently.
But with my discussion with the tech they only inject enough to get the required results.
They dont give a full dose where you think and feel like you just ran a Marathon
Recently while I was in recovery after a small stroke they done another heart ultrasound and They did a test I have never had done.
They mixed a chemical and injected some in my Iv to see if my left side had good communication with my right side on my heart.

Ok well if I go this week I will discuss with them to see whether they can not have to give the full dose if they don't have to

The only other thread on here regarding this chemical stress test the person that replied on there it was as if they'd run a marathon well they said it was like their heart had run 10 to 12 minutes uphill

 

[mission impossible]

Quick question?
Are you taking any immune biologics?

What are immune biologics exactly?
I have immune issues due to mecfs and Addison's disease so I am taking for my immune system:
Valciclovir, lactoferrin, vit d3, transfer factor daily
Twice a week: a combo of echinacea astralagus black elderberry vitamin a and maitake mushroom etc

 

[I am sick]

What are immune biologics exactly?
I have immune issues due to mecfs and Addison's disease so I am taking for my immune system:
Valciclovir, lactoferrin, vit d3, transfer factor daily
Twice a week: a combo of echinacea astralagus black elderberry vitamin a and maitake mushroom etc

Hi
Most immune supressors
Give me painful heart palpations, nose bleeds , itchy scalp for some reason? A lot of cold sores, really more than I have had all my life.

I have also had several ekg test during these.

And I have shown up to do ekg test and thier were No symptons when I got thier!
I know that feeling also!
Here a few biologics

Cimzia -This is a shot As a TNF blocker, Cimzia acts as an immunosuppressant by interrupting the pro-inflammatory signaling pathways that cause tissue damage.

Skyrizzi- This is a shot basicaly the same is above, I think

Taltz- This is a shot shot basicaly the same is above, I think

Otezla- This is a pill Otezla is used to treat active psoriatic arthritis in adults and children aged 6 and older

 

[I am sick]

Ok well if I go this week I will discuss with them to see whether they can not have to give the full dose if they don't have to

The only other thread on here regarding this chemical stress test the person that replied on there it was as if they'd run a marathon well they said it was like their heart had run 10 to 12 minutes uphill

Like I said every place is different!
And some people and test are different as you know.
Some people may need a Lot to get things going.
Please ask them if they are only going to inject what is needed ! For sure!

Mine were all pleasant though.
I left as tired as I went in.