Poll: Which symptoms do you have on a regular basis?

[Stretched]

How would you characterize your chest pain? Some doctors suggest that it is tightness in the chest wall muscles, patients sometimes report a sort of "emptiness" in the chest when close to the beginning of a crash, others are concerned that they might have actual heart issues. To me it is not clear what is going on?

I wonder if others feel what I feel re chest pain. Take walking or mental effort; mine starts like an inflammation along the lower spinal cord area and grows more intense
upwards and moves around into the wall of my chest cavity, not deep inside. If I keep pushing it will become almost incapacitating. This is a key indicator to back off. Persisting rather than resting usually results in PEM. It’s been like this since early on... .

 

[fingers2022]

I wonder if others feel what I feel re chest pain. Take walking or mental effort; mine starts like an inflammation along the lower spinal cord area and grows more intense
upwards and moves around into the wall of my chest cavity, not deep inside. If I keep pushing it will become almost incapacitating. This is a key indicator to back off. Persisting rather than resting usually results in PEM. It’s been like this since early on... .

No nothing like that at all.
It is a good reminder that we all need to respect each other and different symptoms.

Is there any way we can get down to core symptoms so that we can define this illness?
PEM?

 

[Stretched]

No nothing like that at all.
It is a good reminder that we all need to respect each other and different symptoms.

Is there any way we can get down to core symptoms so that we can define this illness?
PEM?

Maybe we have different illnesses - mine for 30+ years. Let’s see how others define their
chest pain. See @Jessee223, @Sushi’s and @Alexi’s Posts, above, and other chest pain
answers in poll... .

 

[Jesse2233]

My chest pain is transient, mild, but also sharp and sudden. It hits on the right or center and is usually linked to physical exertion, positional change, or emotional stress. I also feel it more for a short period after mHBOT

 

[Dabam]

Vertigo anxiety,head pressure, dizziness plus the majority of the list

 

[Rossy191276]

Great poll Jesse... a couple of notes from me based on my experience and communications with patients on some Facebook groups...

My experience is that when in PEM which can be very severe and last for weeks and months I would answer yes to about 75% of your choices + extremes in HR at rest (tachycardia and bradycardia), chest pain, inability to talk, digestive difficulty, breathing difficulty.

Regarding chest pain the theory I have read which makes most sense to me is muscular weakness of the chest wall/diaphragm which results in lactic acid and more weakness which also leads to breathing and talking issues.

But because I have such severe muscle weakness in legs, core, and chest I have been forced into 24/7 bed rest and not talking. And what has happened is I have found that about 75% of symptoms have gone and I can feel almost normal when lying in bed most of the time but left with severe inability to exert energy physically and emotionally and if I try I can trigger PEM which then triggers the other symptoms. My point and I have found this is similar for others is that I would say for me I have a few severe core symptoms but all the others are only triggered my PEM.

The other interesting thing for me is that because I was always triggering PEM until I became bedbound what I didn't realize is that only physical/emotional energy uses trigger PEM in me which then can cause all the brain fog symptoms. But mental exertion is not a trigger for me- I can now work 8hr on my computer with no PEM. When I found this out i thought I was unique but have found plenty of others who are the same... and also other who are the opposite where mental exertion causes PEM but physical/ emotional exertion less so. I have no idea how to explain this given they all use 'energy'.

For what it is worth testing the differences between those who still experiences a lot of their symptoms even when not in PEM vs those who have a lot of symptoms 'fade away' when not in PEM seems an important study group differentiation. This also speaks to the difficulty of doing research because people can meet ICC/CCC very severely when in PEM but then not meet them after aggressive rest.

Also, another important grouping seems to be what sort of energy use most triggers pem or even groupings where only physical or only mental exertion triggers it...

Thanks again for the post and the time you spend being proactive on behalf of all patients

 

[Rossy191276]

Oh and one other symptom I have is that when i wake in the morning and go to move my muscles for the first time they shake for 5-10 seconds before they will activate. Also if I haven't moved for a period while lying and move legs I can get visible shaking for a few seconds.. also general muscle tremor ( internal earthquake) that can last up to 30 mins...

 

[WiseMonkey]

Chest pain (muscular pain in the chest wall ) and fatigue

That's called costochondritis

 

[unicorn7]

But because I have such severe muscle weakness in legs, core, and chest I have been forced into 24/7 bed rest and not talking. And what has happened is I have found that about 75% of symptoms have gone and I can feel almost normal when lying in bed most of the time but left with severe inability to exert energy physically and emotionally and if I try I can trigger PEM which then triggers the other symptoms.

I am absolutely not severe like you, but I have the same thing. I find it very interesting that even when you are in bed 24/7, you have that same feeling that you can feel almost "normal" as long as you do absolutely nothing.
Because I'm now trying to rest more aggressively, I sometimes almost doubt myself. And then trigger myself just a little bit, to convince myself I'm still ill

When I was still overdoing it constantly, I even thought I was more in the fibromyalgia group, because the pain in all my muscles was so bad. When I don't overdo it, I have absolutely no pain. I would have never figured that out, because I was just always overdoing it...

I mostly have PEM from physical exertion, mental and emotional just a little bit. I absolutely agree with you that this is very interesting and it should be considered in research. I find it very hard to give symptoms too, on a bad day I have at least half of the symptoms on the list, on a good day I can have none. As long as I do nothing.

 

[sb4]

Heart pounding is by far my worst symptom but unfortunately its not in the poll, I was interested in how many other people experience this as I'm sure it's not good long term. I do think it is different from chest pain.

 

[BadBadBear]

I was also going to say palpitations and loud heart beating. Maybe we need a poll that drills down on cardiac issues! I can't lay on my left side at night or the heart beats are so intrusive that I can't sleep.

 

[sb4]

I can't lay on my left side at night or the heart beats are so intrusive that I can't sleep.

Glad to hear I'm not the only one who gets this.

 

[Gingergrrl]

I was also going to say palpitations and loud heart beating. Maybe we need a poll that drills down on cardiac issues! I can't lay on my left side at night or the heart beats are so intrusive that I can't sleep.

I think that would be an interesting poll b/c "POTS" is very specific and people may have cardiac symptoms without having POTS. I don't have time to start a poll at present but one that included things like: POTS & orthostatic tachycardia, other tachycardia/palpitations, irregular heart beats, chest pain (all the different types), shortness of breath, etc, would be very interesting.

 

[place]

@heapsreal

The day before a sinus infection i.m tossing all night long. Oddly enough the day before I get sick, I have limitless energy. It’s bitter sweet.

 

[heapsreal]

@heapsreal

The day before a sinus infection i.m tossing all night long. Oddly enough the day before I get sick, I have limitless energy. It’s bitter sweet.

Yes same. If its not shingles is usually sinus infection. I think its more common then we think. I keep abx on hand all the time. A crappy nights sleep and post nasal drip with frontal headaches, abx down the hatch.

 

[Sundancer]

good poll, i ticked all of them even tough some 5 of the ticks are gone now.

I miss high muscle-tension ( think that goes hand in hand with the feeling twired), is that something that many people have?

hart palpitations and arrhythmia ( I too cannot sleep on my left side anymore)

insomnia ( that's different from unrefreshing sleep, the worst spell I had was 5 days without sleep, I do not recommend that to anybody, several supplemental tries later I've found a combi that lets me sleep, some hours each night, it's much better now)

and I've had severe tinnitus, an awful unrelenting noise in both my ears, thank god that is gone now.