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Heart issues

Butydoc

Senior Member
Messages
790
I had to reschedule my November Neuro. appointment because my wife was having a heart cath. on that day. ( that's another crazy doctor story) Anyway the first available appointment is first of January. I'm writing all this info down to talk over with him. I have not tried a bata blocker to date.

Thanks for all the input.
Jerry Mc
Hi Jerrymcfadyen,

Can you describe your chest pain? Is your pain constant, intermittent, related to eating or exertion, burning, aching, sharp, hurts when you press on the chest? What relieves your pain? Do you get short of breath when you have the pain?

Best,
Gary
 

jerrymcfadyen

Senior Member
Messages
123
Location
East Bend, NC USA
@Butydoc
It feels like someone is squeezing my heart tightly or like it's bruised. It usually happens when I'm resting or laying on my back. It has happened when I was exercising in the pool once but only once.
 

Butydoc

Senior Member
Messages
790
@Butydoc
It feels like someone is squeezing my heart tightly or like it's bruised. It usually happens when I'm resting or laying on my back. It has happened when I was exercising in the pool once but only once.
Hi Jerrymcfadyen,

An unusual chest symptom. Doesn't sound like costochondritis. It also doesn't sound cardiac, especially since you have had a negative cardiac work-up. As Martial suggested, acid reflux should be ruled out all though your symptoms are not classic. I tend to agree with Sushi, another poorly understood symptom of ME that improves as the ME symptoms improve.

Best,
Gary
 

Gingergrrl

Senior Member
Messages
16,171
@Butydoc I know I am not Jerry and don't want to detract from his thread! I just wanted to ask your opinion if shortness of breath and chest pressure can be a symptom of ME/CFS and dysautonomia in and of itself without a separate cardiac problem?

I have constant shortness of breath and chest pressure with the slightest exertion including walking, eating food, or lifting anything. I also have constant low blood pressure and am told I have low blood volume. I had severe tachycardia but it is completely controlled with beta blocker. In my case, lying flat completely alleviates my symptoms which seems to be the opposite of Jerry who has chest pain when lying down and resting.

My cardiologist thought it was possible I have "microvascular angina" or spasms (but regular angina or blockage has been ruled out.) My echocardiogram (both lying flat and standing) showed no abnormalities and all tachycardia is sinus rhythm and no arrhythmias.

In your opinion, can shortness of breath & chest pressure be a symptom of ME/CFS in and of itself b/c we are just not producing enough energy or have mitochondrial problems? I know you cannot diagnose me and I am just asking as a general question from your own experience or with PWC's in general.

Thank you so much!
 

Gingergrrl

Senior Member
Messages
16,171
I'd never thought of describing it this way, but I've experienced the exact same feeling.

@halcyon That's interesting and for me it is totally different. I feel breathless as if I had run up a flight of stairs and when it is really bad, I feel like a tight belt is squeezing around my entire chest and back or something really heavy is on top of my chest. But it doesn't feel like squeezing or bruising for me.
 

Butydoc

Senior Member
Messages
790
@Butydoc I know I am not Jerry and don't want to detract from his thread! I just wanted to ask your opinion if shortness of breath and chest pressure can be a symptom of ME/CFS and dysautonomia in and of itself without a separate cardiac problem?

I have constant shortness of breath and chest pressure with the slightest exertion including walking, eating food, or lifting anything. I also have constant low blood pressure and am told I have low blood volume. I had severe tachycardia but it is completely controlled with beta blocker. In my case, lying flat completely alleviates my symptoms which seems to be the opposite of Jerry who has chest pain when lying down and resting.

My cardiologist thought it was possible I have "microvascular angina" or spasms (but regular angina or blockage has been ruled out.) My echocardiogram (both lying flat and standing) showed no abnormalities and all tachycardia is sinus rhythm and no arrhythmias.

In your opinion, can shortness of breath & chest pressure be a symptom of ME/CFS in and of itself b/c we are just not producing enough energy or have mitochondrial problems? I know you cannot diagnose me and I am just asking as a general question from your own experience or with PWC's in general.

Thank you so much!
Hi Gingergrrl,

It appears many people with CSF/ME complain of shortness of breath (SOB) when feeling poorly. I personal have also experienced this symptom. I'm afraid I can't figure this one out. Even though I feel SOB, I don't really believe that I'm oxygenating poorly. I think this is probably an abnormal central nervous system response to feeling bad in my case.

Best,
Gary
 

halcyon

Senior Member
Messages
2,482
@halcyon That's interesting and for me it is totally different. I feel breathless as if I had run up a flight of stairs and when it is really bad, I feel like a tight belt is squeezing around my entire chest and back or something really heavy is on top of my chest. But it doesn't feel like squeezing or bruising for me.
I get that as well, but I was referring more to chest pain. I've had the same soreness in my chest after having severe tachycardia. The tenderness lasted about a day and then went away.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
My GP told me I probably had costochondritis when I reported chest pain. It usually feels like a belt tightened too much around my rib cage, and sometimes as though someone is pushing on my sternum. It used to wake me up in the middle of the night, and I could usually relieve it somewhat by sitting up... It was really scary, but ok once I knew that my heart wasn't actually giving out!
Luckily, that symptom has been better recently. I think LDN has helped, and also since I had to give up work I can actually pace myself better and not get so physically exhausted.
 

jerrymcfadyen

Senior Member
Messages
123
Location
East Bend, NC USA
In your opinion, can shortness of breath & chest pressure be a symptom of ME/CFS in and of itself b/c we are just not producing enough energy or have mitochondrial problems? I know you cannot diagnose me and I am just asking as a general question from your own experience or with PWC's in general.

Thank you so much!

That's what I was asking here in the first place. I just couldn't get it worded right.

I too have extreme shortness of breath and especially with any exercise.
Jerry Mc
 

jerrymcfadyen

Senior Member
Messages
123
Location
East Bend, NC USA
Hi Gingergrrl,

It appears many people with CSF/ME complain of shortness of breath (SOB) when feeling poorly. I personal have also experienced this symptom. I'm afraid I can't figure this one out. Even though I feel SOB, I don't really believe that I'm oxygenating poorly. I think this is probably an abnormal central nervous system response to feeling bad in my case.

Best,
Gary
I have a pulse/ox meter that fits on the tip of your finger. My O2 level is usually 97 or 98 so it's not the blood being poorly oxygenated. I'v often wondered if somehow the oxygen just isn't getting delivered properly.
 

Gingergrrl

Senior Member
Messages
16,171
That's what I was asking here in the first place. I just couldn't get it worded right. I too have extreme shortness of breath and especially with any exercise. Jerry Mc

Jerry, You actually worded it really well and it helped me formulate my question b/c I had been wondering the same thing as you!

I have a pulse/ox meter that fits on the tip of your finger. My O2 level is usually 97 or 98 so it's not the blood being poorly oxygenated. I'v often wondered if somehow the oxygen just isn't getting delivered properly.

I have a pulse ox meter too and mine is always between 97-100 so I know the oxygen is in the blood, it is just maybe not getting delivered properly to the cells? Or the mitochondria is damaged and can't use it normally? When I had the horrible experience with the IV saline my pulse ox went down to 84 but that was the only time I have ever had an abnormal reading (and I had shortness of breath for at least 5-6 months prior to that incident.)
 

Gingergrrl

Senior Member
Messages
16,171
Hi Gingergrrl, It appears many people with CSF/ME complain of shortness of breath (SOB) when feeling poorly. I personal have also experienced this symptom. I'm afraid I can't figure this one out. Even though I feel SOB, I don't really believe that I'm oxygenating poorly. I think this is probably an abnormal central nervous system response to feeling bad in my case. Best, Gary

@Butydoc Can you explain more what you mean by an abnormal central nervous system response re: SOB? Do you mean it is an autonomic problem where the brain is not communicating properly with the heart and blood pressure re: oxygen or something different? I have pretty limited medical background with this stuff but very much want to understand it all!
 

Butydoc

Senior Member
Messages
790
@Butydoc Can you explain more what you mean by an abnormal central nervous system response re: SOB? Do you mean it is an autonomic problem where the brain is not communicating properly with the heart and blood pressure re: oxygen or something different? I have pretty limited medical background with this stuff but very much want to understand it all!
Hi Gingergrl,

What drives respiration is really very complicated. The autonomic nervous system is responsible for controlling involuntary respiration. Most of these neural centers reside in the Pons and the Medulla. CO2 is the main gas that help to determine respiratory rate. Hypoxia (low O2) can also drive the breathing rate. Some of the posters in this thread have worn pulse oximeters which showed normal oxygen saturation levels with shortness of breath. It seems to me that autonomic dysfunction is very common among people with CSF/ME. Since the autonomic nervous system is involved in respiration, it is not hard to imagine an abnormal respiratory response in these individual.

Best,
Gary
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
My autonomic doctor once explained to me the mechanism that made us short of breath from climbing stairs. Part of it had to do with muscle groups (different from simple walking) and those muscles part in pumping blood upwards. Too bad I can't remember what he said! :(

But I do remember that he said if you could climb stairs without a total poop-out (not his term!) it was unlikely that you had dysautonomia.

Sushi
 

Gingergrrl

Senior Member
Messages
16,171
@Gondwanaland My Mag & Potassium are always low but within the normal range and I don't believe I have ever had B1 tested. What does the level of B1 tell you?
 

Gondwanaland

Senior Member
Messages
5,092
@Gondwanaland My Mag & Potassium are always low but within the normal range and I don't believe I have ever had B1 tested. What does the level of B1 tell you?
Vitamin B1 plays an important role in heart health being synergistic with potassium and magnesium. Supplementing folates uses up potassium, magnesium and B1 (sorry I don't have a specific reference for this at hand right now).
General references for B1 and heart health are:
http://umm.edu/health/medical/altmed/supplement/vitamin-b1-thiamine
http://www.easy-immune-health.com/congestive-heart-failure-death.html
http://charles_w.tripod.com/kandthiamin.html

When I supplemented methylfolate I already was magnesium defficient, experienced extreme potassium deficiency and a few days later scary symptoms very similar to vit B1 deficiency occurred (discoloration of hands and feet, breathlessness, chest and heart pain, severe weakness, rapid weight loss, etc). I had extreme salicylate intolerance and can describe my heart and lung pain as the organs were being stripped from magnesium for other essential reactions. When I went to ER (3x) they thought it was all in my head since my serum levels of magnesium, potassium and sodium were in the high end of normal. One week later I convinced my dr. to test for urine magnesium as well and it showed very low below range. I improved a little after starting a B complex, and finally felt really better when I finally found a form of magnesium I could tolerate.

BTW supplementing potassium with low Mg and low vit B1 levels wasn't helpful at all.
 

Gingergrrl

Senior Member
Messages
16,171
My autonomic doctor once explained to me the mechanism that made us short of breath from climbing stairs. Part of it had to do with muscle groups (different from simple walking) and those muscles part in pumping blood upwards. Too bad I can't remember what he said! :(

But I do remember that he said if you could climb stairs without a total poop-out (not his term!) it was unlikely that you had dysautonomia. Sushi

I haven't been able to climb any stairs in about six months and when the elevator breaks in my bldg, I am completely trapped which is scary!
 
Messages
15,786
My oxygen saturation can drop quite a bit when I'm worn out or standing too long, or lying in the wrong position. Low 90's is pretty common when that's happening.

Though sometimes my body seems to freak out if I go under 98%. I'll hit 97% at times, and my heart rate will rise quite a bit to "compensate". Then my oxygen goes back up to 99% after a bit. And then my heart rate goes back down. Then my oxygen goes down to 97% again, and my heart rate rises again. This can cycle continuously for hours.

My only episode of turning blue happened while sleeping, and on my good side. Usually it just goes down to the low 90's if I'm on my back, stomach, or right side, but that time it did it on my left side as well.