Anyone else in physical discomfort 24/7?

[sb4]

I have constant 24/7 cardiovascular discomfort generally from bounding pulse but other similar symptoms, like inability to relax. It never goes away, not when I lay down, nor when I sleep. It just varies in intensity based on factors like heat, exertion, etc.

Do other people experience constant discomfort or do you get relief when laying down for example?

My symptoms have worsened recently and it's hammering my ability to enjoy anything.

 

[wabi-sabi]

I get relief from lying down except when I have crashed myself. That's one of my crash measures: how well the bounding pulse feeling goes away when I lie down. If it doesn't- I need to rest more. That being said, there's no amount of resting that can make up for not having the right MCAS medications.

 

[BrightCandle]

I have a bunch of physical pain since Covid. My lower back always hurts, I have sciatica on the front of my leg and the constant headaches alongside always feeling bloated. A bunch of pain and discomfort all the time, I never go below a 5/10.

 

[Vladimir]

As I understand CFS/ME, permanent discomfort/pain is something that is present in most of us.

It's not 24/7 because you are literally unconscious when you sleep so you don't feel anything, but as soon as I wake up I get back to this feeling of discomfort and mild pain in my joints, back etc.

Our brain adapts to that with time and tends to ignore some of those feelings for some time, but this discomfort/pain continues to constantly overload our nervous system in background which makes it kind of a vicious circle..

 

[bad1080]

i do to some extent and i wasn't even aware of it, it was just normal for me, like life is supposed to feel like that. when i had moments of serenity i noticed "oh this isn't normal at all? do other people feel like this every day?".

 

[sb4]

It seems like most things it depends. Still I haven't heard of anyone complaining of a 24/7 bounding pulse in this community. I set up a subreddit for it
https://www.reddit.com/r/ChronicBoundingPulse/
and invited some of the few people I found on reddit that report the same thing.

It's troubling me on 2 fronts though.
First I'm in constant discomfort from it and have once again reached the level where I can't enjoy anything anymore, I'm just constantly trying to get through the day, distracting myself with things.
Second, I'm certain that it is causing long term damage to my cardiovascular system. I have heard that POTS doesn't cause heart problem but the vast majority of POTS patients symptoms go away when they lie down. Mine do not.

I'm hoping this recent worsening is caused from the COVID I got a few months ago and it's a temporary thing as I cannot cope being like this again all the time.

@bad1080 Is the discomfort you experience the same as mine, like a bounding pulse thats present regardless of heart rate, or blood pressure?

@wabi-sabi About this bounding pulse you experience. When you have it and you lie down, does it temporarly get worse. Like it takes you nervous system ages to adjust to your new position?
I find things like climbing the stairs not so bad but stopping when I reach the top awful as my heart continues to pound as though I am still climbing the stairs for minutes or more after.

 

[bad1080]

@bad1080 Is the discomfort you experience the same as mine, like a bounding pulse thats present regardless of heart rate, or blood pressure?

after reading on your subreddit i don't think that's what i am experiencing. i'd say mine feels like anxiety without being anxious, like a constant tension under the surface, or the inability to let go (e.g. i have to very actively relax with breathing when i want to go to sleep). i get the throbbing pulse thing when i am angry and i get angry rather quickly under certain conditions (like blowing a fuse). but then it's related to pulse and blood pressure i guess, which you say yours is not.

edit: make sure it's not from a supplement or medicine, maybe you changed something recently?

edit2: seems like it could be related to covid: https://old.reddit.com/r/covidlonghaulers/search?q=pulse&restrict_sr=on&include_over_18=on
lots of search results, this one shows a video where you can see the pulse on the stomach: https://old.reddit (dot) com/r/covidlonghaulers/comments/1ezgs4k/anyone_elses_stomach_pulse_like_this_now/
one reply:

Pulses happen to many people with long covid, look it up on different social medias, patients may experience it in other areas.

I have friends who live like it's 2019 and they got pulses on their head, around their eyes, temporal arteries after the past winter covid surge, at least the ones who shared their covid infection in their Instagram stories.

from:

https://www.reddit.com/r/covidlonghaulers/comments/1ezgs4k/_/ljmgjig

edit3: i can't stop it from converting the link automatically and it looks wrong on my end, sorry but nothing i can do about it other than breaking the link

edit4: covid is known to cause blood clotting, maybe that's the cause?

 

[SlamDancin]

Yup. It’s muscle tension for me. My muscles can’t relax properly to the point they form painful knots. Benzos are extremely helpful so I take them for a few days and my muscles actually are able to heal.

 

[Cipher]

Still I haven't heard of anyone complaining of a 24/7 bounding pulse in this community.

I think the medical term is palpitations. Do you have tachycardia at the same time?

 

[sb4]

@bad1080 I didn't know reddit search worked that well. Thanks for the link. Yeah it's exactly like that except I've had it for 13 years now with no let up. I got ill in 2011 just before my 21 birthday with tonsilitis and it lead to this. I think its a combination of poor blood flow (for whatever reason) and a bizarre, harmful autonomic nervous system adaption to compensate that is somehow permanently switched on.

@Cipher Yeah but I find doctors use palpitation to mean heart racing, heart fluttering, etc. Bounding pulse is more specific to what I am experiencing.

I have been desperately rummaging through old meds and supplements over the past month to try and help this and weirdly just this morning after writing this thread I decided to try some clonidine I got a year ago but only took a couple doses of. I noticed the mental racing and inability to relax lessened but the bounding pulse remained. I then took a propranolol a couple hours later and right now I feel the best I have felt in a couple of weeks. Still the bounding pulse is there but its a lot more manageable. The last couple of weeks have been hell.

Perhaps the combination of both is required? Either way this indicates the problem is probably with adrenaline and sympathetic overreaction. Interstingly this improvement has not coincided with a racing heart. Before when I have done this to reduce the pounding my body compensated by sending my heart rate up.

This is a very interesting development. I hope it is the combo of clonidine and propranolol and I hope it doesn't cause tolerance. Even if it does I can try other things that target adrenaline.

 

[bad1080]

since yours is not related to tachycardia i doubt it is useful but i put it here anyways: i found folate (400µg daily) very helpful with tachycardia.
i hope your solution stays helpful for a long time! glad you found something that helps!!!

 

[Wishful]

Any physical symptoms I have (pain, brainfog, lethargy) are 24/7 during some periods, but may go away during other periods. Lying down doesn't ease them. I don't notice them while I'm asleep, because sleeping. I don't think my ME has ever affected my heartrate.

 

[bradipa]

24/7 cardiovascular discomfort

Me too, 24/7, during crashs, I will have a break only when I am completely back to baseline, which with a bad one, takes months and lots of resting. @sb4 , could that be the case for you? What I'm experiencing permanently while in a crash are tachycardia, palpitations, frequent arrhythmia, the whole OI stuff, dyspnoe. Probably being forgetting something, I'm pretty foggy right now.

It's not 24/7 because you are literally unconscious when you sleep so you don't feel anything,

Well, @Vladimir , I'm not completely unconscious when I sleep. I can feel my body, the pain and the tense muscles all the time, and my brain doesn't stop - it's like it's performing two tasks at a time, one, keep working at almost daytime level, two, dream. Also, big part of my dreams are lucid.

Yup. It’s muscle tension for me. My muscles can’t relax properly to the point they form painful knots.

That counts for me, too, @SlamDancin . Yes, always, whether I'm in p.e.m. or not. Permanently doing bodyscans and telling my muscles to relax.

 

[wabi-sabi]

About this bounding pulse you experience. When you have it and you lie down, does it temporarly get worse. Like it takes you nervous system ages to adjust to your new position?

Hmmm.... I don't think it gets temporarily worse when I lie down. It's just that most of the time lying down makes it better and when the MCAS is really out of control even that doesn't make it better. But I do get much more sensitive to position when I am in that state. For example, if i lie on my back my pulse is better and if I lie on my side my pulse gets worse. When I'm not in an MCAS flare I can lie on my side just fine. When my mast cells are this out of whack, only medications fix it. I can't pace myself better, but I can crash myself worse.

Have you taken your blood pressure during these episodes? Some people have the paradoxical situation of blood pressure too low when vertical and then blood pressure too high when horizontal. That would be important to know if this is happening to you.

I'm hoping this recent worsening is caused from the COVID I got a few months ago

My MCAS certainly got a lot worse after COVID. I am just so much more reactive and touchy. The pounding heart (not increased heartrate) feeling has gotten much worse after COVID. I can't remember if I had it before COVID (since my memory is much worse too), but I certainly didn't have it to this extent.

My bounding pulse feeling is in my chest (heart). I don't mean I put my finger on my wrist pulse and it feels different. I have a good cardiologist and I will see if she has any thoughts when I see her next. None of the MCAS or ME/CFS issues seem to have hurt my heart so far, so hopefully they are not hurting yours either. Of course, long COVID seems to cause heart issues on top of the ME/CFS issues it causes.

 

[sb4]

What I mean by when sleeping is I have adrenaline filled dreams / nightmares constantly and wake up with my heart pounding harder / racing. So when I sleep my pulse is still bounding.

@bradipa I don't get PEM so I don't crash. For me this is my single worst symptom and I've had it consistently for 13 years. Perhaps I'm forever stuck in my own version of a "crash" where my body lets me keep doing things so I keep crashing? That said I have gone through periods of months being almost bed bound and that symptom didn't abate. What you're describing sounds like regular POTS, do you have bounding pulse too?

@wabi-sabi I don't seem to have MCAS problems (touches wood). I have noticed that lying on my back is better for heart pounding and I do what @Mary says and keep my hands on my sternum, seems to help relax a bit.

I have taken my blood pressure when my heart is bounding and it seems to be irrelevant. It can be high, low, or normal. Same with heart rate. The bounding pulse is a separate thing.

Yeah it seems a small but significant amount of people got the bounding pulse after covid.

Yeah hopefully it's not hurting my heart, I think those who have periods where their heart isn't playing up (when lying down or sleeping) will probably be fine. It's just mine never gets any rest.

So far today has gone actually surprisingly quite well. This morning was miserable as it has been for over a month now but for the last 7hrs or so I have felt surprisingly somewhat relaxed which is super rare for me. I think its the clonidine. I'm going to keep the dose as low as possible because it's a drug that will cause downregulation of symptoms with long term use.

 

[bradipa]

@sb4 , glad you are a bit better. Hope you have found something that works for you, there.

I don't know if I have pounding pulse, because I don't get exactly what it means , - sorry really struggling with my reading and my English today, so you don't need to bother explaining it, I probably still won't understand .

When I am in such a big crash I have these symptoms in whatever positions I am*, it's only when, after weeks, I start being better it turns into what I think is "normal" OI, with troubles when lying flat and when upright but not when lying with a pillow in a 45* angle. When I'm at my baseline and pacing really well, my OI symptoms are pretty mild as long as I don't stay upright for more than a few minutes. Still have autonomous symptoms the moment I should fall asleep.

*Come to think of it, that's pretty new and might be triggered by a covid infection last year (I've had me/cfs for fifteen years)

 

[xploit316]

I used to get a pounding heart especially after dinner. Changing my everyday table salt to Himalayan Pink salt and this solved the pounding heart issue.

 

[hapl808]

It's troubling me on 2 fronts though.
First I'm in constant discomfort from it and have once again reached the level where I can't enjoy anything anymore, I'm just constantly trying to get through the day, distracting myself with things.

Yeah, not sure what you mean by 'bounding' pulse but without tachycardia.

I've mentioned before - my pulse is 90-110 when I'm just sitting at my computer. It will drop to 80-90 when lying in bed. It's exhausting, and never stops. I've tried beta blockers, guanfacine, various supplements, breathing exercises, meditation, H1 and H2 blockers, mast cell stabilizers, etc.

It 'almost' never goes away. Every few months I'll get a few hours in the evening when it'll drop into the low 70's, and it's a huge relief. But I can never figure out why I get a few hours of relief.

Basically, I always feel like I'm recovering from the flu, but it never goes away - just sometimes gets even worse when I crash and become fully bedbound.

 

[Dysfunkion]

I have a bunch of physical pain since Covid. My lower back always hurts, I have sciatica on the front of my leg and the constant headaches alongside always feeling bloated. A bunch of pain and discomfort all the time, I never go below a 5/10.

Same thing, that's crazy! The bloating is worse when the lower back/tailbone thing is worse and I suspect that is because of the pressure inflammation in the guts is putting on it? It will also increase the headaches if bad enough and contributes to the heavy head things. Sometimes it's better or worse, eating one wrong thing though could have it flaring for weeks. It also has environmental immune based triggers too so it's not just what is being eaten.

edit - it's not, can flare independently as evidenced by this horrible heavy headed morning.

Like someone else said that constant feeling of tension under the skin too like feeling anxious but I'm not actually anxious. Like everything else I largely feel that one in my face/head and it flares from immune based triggers like everything else. Sometimes I have windows but I can't pin them down to anything specific.

after reading on your subreddit i don't think that's what i am experiencing. i'd say mine feels like anxiety without being anxious, like a constant tension under the surface, or the inability to let go (e.g. i have to very actively relax with breathing when i want to go to sleep). i get the throbbing pulse thing when i am angry and i get angry rather quickly under certain conditions (like blowing a fuse). but then it's related to pulse and blood pressure i guess, which you say yours is not.

edit: make sure it's not from a supplement or medicine, maybe you changed something recently?

edit2: seems like it could be related to covid: https://old.reddit.com/r/covidlonghaulers/search?q=pulse&restrict_sr=on&include_over_18=on
lots of search results, this one shows a video where you can see the pulse on the stomach: https://old.reddit (dot) com/r/covidlonghaulers/comments/1ezgs4k/anyone_elses_stomach_pulse_like_this_now/
one reply:

from:

https://www.reddit.com/r/covidlonghaulers/comments/1ezgs4k/_/ljmgjig

edit3: i can't stop it from converting the link automatically and it looks wrong on my end, sorry but nothing i can do about it other than breaking the link

edit4: covid is known to cause blood clotting, maybe that's the cause?

Yes the pulsing thing! I get that one too in that area. Sometimes it is also on the bridge of my nose or one of my arms/legs. More rarely it will happen in my eye lid, it's the most bizarre thing. No triggers for it either I can find, it just randomly will happen.

 

[southwestforests]

There are enough different health things going on that range from ME/CFS to internal organ to neurological to musculoskeletal issues that yes, there is constant discomfort of some kind or another.

Do other people experience constant discomfort or do you get relief when laying down for example?

Lying down relieves some kinds of discomfort.
And causes other kinds of discomfort.