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Shortness of breath 24/7 : what would help ?

Dechi

Senior Member
Messages
1,454
Hello,

I usually have intermittent shortness of breath, when I move, but now it's 24/7. 10 days ago I had a lying stress echo at the Ottawa heart institute. It lasted a little less than 9 minutes and had me lying down and pedaling while they were increasing resistance and asking me to go faster. After 1 minute my legs were already really weak and the acid lactic build-up was high. I made sure to fulfill their requirements for the test but after 9 minutes we aborted, my legs couldn't take it anymore. This test was pretty much like torture.

Since then, every breath I take is shallow and I have the feeling that I am not completely filling my lungs with the oxygen I need. It is annoying and worrysome.

Does anyone else have that and is there any supplements that could help with that ?

Thanks
 

Dechi

Senior Member
Messages
1,454
What were the results of the test?

A few minor anomalies, nothing major :

ECHO CARDIOGRAM: The left ventricle & left atria are mildly dilated. As is the right atrium. There is a mild 1+ tricuspid regurgitation. The rest of the findings are normal, including normal aortic, pulmonary & mitral valve. The interatrial septum is normal as is the aortic root. There is no pulmonary hypertension.

hsCRP: Civic Heart Centre, Ottawa(Low risk: Below 1.0) 11/2016


Stress ECHO: The baseline ECG displays sinus rhythm with non-specific ST abnormalities with occasional PVCs. There is a 1 mm ST segment depression in the inferior leads and in leads V4 & V6 with a recovery after 1 minute. The exercise was stopped due to leg fatigue. A target workload of 25000 RPP was obtained. There was also decreased left ventricular volume and increased left ventricular systolic function during exercise. NO wall motion abnormalities occurred. The may be a false positive ECG change of ischemia since there was not ischemia noted during stress.Civic Heart Centre, Ottawa: 11/2016


time. bpm BP

0 m. 74 118/82

3 m. 101 122/82

5 m. 114. 150/82

9 m. 148. 188/80
 

Dechi

Senior Member
Messages
1,454
Are they aware of research by Systrom's group at Brigham and Women's in Boston on patients with unexplained exercise intolerance with dyspnea and low-fill pressure?

Note that this is neither congestive heart failure nor pulmonary hypertension, which are more easily recognized.

I doubt it. I told my doc how hard this test was. I mean, it's a lot harder than the previous one I did on a threadmill, jogging, a little more than 1 year ago. Or maybe I thought I was getting better but I am actually worse ?
 

actup

Senior Member
Messages
162
Location
Pacific NW
@Dechi, please check for orthostatic intolerance. I had severe shortness of breath after mild exertion. My bp dropped and hr increased when standing which took a while to figure out as bps are almost always done in a sitting position.

Midodrine (alpha agonist) has been very effective for me and atenelol works for many others with standing tachycardia. I can now tolerate moderate paced exertion with midodrine on board. Shortness of breath returns when drug wears off unfortunately. I feel a bit like a windup doll ;-/
 

Dechi

Senior Member
Messages
1,454
@actup I have atypical orthostatic intolerance, but no POTS. I don't know why it is atypical, didn't get the chance to talk about it much with my doc. I will know more in the future.
 

anciendaze

Senior Member
Messages
1,841
I also have orthostatic intolerance without POTS. It doesn't fit in any convenient category, but has caused me to collapse in public. I do not have significant dyspnea, and my legs seem to function pretty well.

I'm somewhat concerned that the test report makes no mention of dyspnea, yet your post makes it clear this is a real problem for you. The concentration on muscle fatigue causes me to wonder if they have done an EMG to check function of neuromuscular junctions. Impairment in these would cause both leg muscles and chest muscles to be weak, as happens in myasthenia gravis. There can also be non-specific weakness of heart muscles. Several autoantibodies can affect these junctions, but tests are not run unless patients show a pretty clear clinical presentation. So far, your clinical picture is atypical.

You might ask a doctor to run that report past Systrom's group to see if it matches any profile they've found in their systematic iCPET work on many patients with unexplained exertional intolerance and dyspnea. A telephone call and fax would be enough to get an opinion about a mysterious case, assuming a doctor is interested in more than filling out paperwork.

Wilder possibilities include channelopathies like periodic paralysis. A subset of those patients don't experience actual paralysis, but do have profound weakness. Because it is hard to live without walking many have damage to leg muscles that puts them in wheelchairs. It is important to find what is causing the problem before it reaches that stage.

All the above is predicated on the idea you may have a recognized medical problem that is not the amorphous "Chronic Fatigue Syndrome" which gets us cast into limbo.
 

Dechi

Senior Member
Messages
1,454
@anciendaze My doctor thinks I have ME following an enterovirus 68 infection, which has yet to be confirmed. This 24/7 shortness of breath, even when sitting or lying down, happened as PEM and a new sumptom, after the test. Which explains why it didn't show in the test.

I had three EMG done and all were normal. There is nothing wrong with my muscles. The leg weakness, in fact it's an "all muscle in the bosy weakness " comes from what seems to be an accumulation of lactic acid.

I do have asthma triggered by allergies but medication doesn't help. Maybe I will take more, just to see.

I have never heard of the Systrom group, I will have to check into that, thank you !
 

Dechi

Senior Member
Messages
1,454
@anciendaze the test was on november 29th and I guess I noticed I was more out of breath than usual maybe 2-3 days ago, on december 5th maybe ? The post exertional malaise appeared 24 hours after the test. I had more dyspnea on effort but I don't remember it being as bad as now.
 

anciendaze

Senior Member
Messages
1,841
Could you have a case of "walking pneumonia"? I know that has been running through populations up north this year.
 

Dechi

Senior Member
Messages
1,454
@anciendaze hum, never heard of that, I'll check it out ! I never had pneumonia in my life, and haven't had any flu or infection since being ill with ME, but who knows ? Thanks again !

I checked it and it might be a possibility. No cough, though. If I have it and I need antibiotics, is it safe to take some ehen you have ME ?
 
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anciendaze

Senior Member
Messages
1,841
If the alternative is not breathing, taking the antibiotics is safer. There is no such thing as absolute safety, only differences in risk.

We tend to get missed in diagnosing respiratory infections because we seldom run a detectable fever, after the initial acute phase. This is one reason I believe ME patients have immune impairment.
 

Dechi

Senior Member
Messages
1,454
If the alternative is not breathing, taking the antibiotics is safer. There is no such thing as absolute safety, only differences in risk.

We tend to get missed in diagnosing respiratory infections because we seldom run a detectable fever, after the initial acute phase. This is one reason I believe ME patients have immune impairment.

I also think we have a pretty messed up immune system... Since that test, I went from being warmer than I had been all my life, to being cold like I was before. And now I alternate between just ok, warm, hot, and cold. It never gets boring... ;-)
 

Dechi

Senior Member
Messages
1,454
Yep. Not breathing means dying.

Yes, of course. My breathing is more shallow, but I don't think it would stop completely. It's just another one od those " not really disabling but really annoying " symptoms.
 

Dechi

Senior Member
Messages
1,454
I went to my weekly therapy session for anxiety today and my psychologist thinks it might be anxiety induced, and it makes a lot of sense. I was getting ready to go back to work in the next few months, or at least trying, and I just had a setback because of this test. This is putting pressure on me because I am the sole bread winner and the money is running low. So my anxiety is high.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I went to my weekly therapy session for anxiety today and my psychologist thinks it might be anxiety induced, and it makes a lot of sense. I was getting ready to go back to work in the next few months, or at least trying, and I just had a setback because of this test. This is putting pressure on me because I am the sole bread winner and the money is running low. So my anxiety is high.

Sorry to hear this, I am a single male, working was killing me, almost fell asleep at the wheel a couple times. So that could have been my end right there. Would have to take a nap in grocery store parking lot, go in shopping a little zombified still. Not a big household to run, but still some things needed to be done.

I am still working on my disability, luckily my parents are still alive, but dad is coming down with dementia, and is not a very nice person. Very old school, and only sees things his way, been that way always. Its not the dementia.

GG
 

Dechi

Senior Member
Messages
1,454
@*GG* I always thought you were a female, lol ! Gigi is a female name in french. I am a single female.

Sorry about your disability. It is hard to manage life with this illness. I hope I can get back to work, and I wish the same for you !