Breathing probs- anyone get the same?

[jo-jo]

Hiya everyone,

I have not posted on here for ages, i have been more of a 'watcher'. My pain is not that great and i have feeling quite tired. I am'plodding on' though, working 3mornings a week at a local special needs playgroup. On the other two mornings- one of them it does not run because of mother and todlers and one I go to hydrotherapy (YAY!). It is lovely and the physio rocks.

Sometimes at night a lot of things can click about and just 'not feel right'! and sometimes it feels like my breathing is not automatic and a real effort to breath. It is hard to explain. Does anyone else experience this because i am not very good at staying calm and relaxing- i find it really scarey. Do you think it is just one of these wierd HMS things and our bodies playing tricks on us so the more i think about my breathing the worst it gets because i am thinking about it and am scared by it- i then try not to think about it and think of other things to take my mind off it but it is hard not to think about it when i have started to. Sorry i am prob making no sense- but does anyone else get this breathing thing?! HMS is a real ******!

Sending you all loadza painfree hugz

Keep smilin'
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Xxx em xxX

[t4curtis]

hi there, i was recently reading a bit about heds hms and noticed an article which said they have elements of autonomic dysfunction, like the whole passing out when you stand up because the connective tissue in the veins ( or something) doesnt constrict well well enough to push the blood up to the brain properly, im not sure of exactly what it is all about but basically autonomic means things the body does unconsiously, i am pretty sure this would include breathing lol, and yes i do get this from time to time there would appear to be no rhyme or reason to it the same as with the blacking out thing, the other thing i have a problem with is sometimes when i am walking i forget how to, and i look down and it is like wow im still walking but it is like i cant feel it, or just cant think how i am doing it, weird i know and i am sure it isnt the norm but then none of us are different we all have things that are strange!! i hope this helped a little i hope you can use it to search for more info x good luck

[sopvik]

I too get a similar thing with my breathing. It is almost like I've forgotten to breath and then I take a very panick stricken deeo breath to push the air around me. Its almost like coming up from being under water for a long time and desperately needin gthat first breath. If that makes sense.
I was really interested in what you said t4curtis about feeling dizzy and not enough blood getting to the brain cos of the tissues....can you explain a bit more or point me to a thread about it. I suffer from low blood pressure too and often go very light headed and pass out for no apparent reason. Sometimes even when I'm sitting down. COuld this be linked to HMS?

[sillyoldbear]

hi

i dont know anything about the autonomic thing and prob what im about to say isnt even the same but for a while i was struggling to breathe and getting very out of breath at the slightest movement- even making a cup of tea and then after getting in the car one afternoon i really couldnt catch my bretah at all and ended up at the emergency dr's with an asthma attack- was treated and sent home but continued having the attacks and shortness of breath. so after a trip to a+e and xrays etc they decided that the fibromyalgia was affecting my lungs as it can affect any muscle- do you have fms too? could it be a similar thing to mine?

simone

[sopvik]

Thanks for that. I've not been diagnosed with FMS but that wsa interesting to read. I do get a lot of really sharp chest pain too which I have been in hospital for. THey did all the usual like ECG and bloods but no scan s was pregnant at the time. Thought it was PE (cots on lungs) at first but then said just a muscle pain. I never thought about it being connected to anything else until I came on this site and realised that muscle pain is seriuosly linked to HMS. Mightbring it up if and when I get to see Prof Bird

[Retro]

For posts related to Autonomic Dysfunction or POTS please use the search facility.

Hi Em,

Long time no see, welcome back. I can relate to what your saying, I can't breath if I lie on my back. And my breathing goes a bit wonky when I lie down on my side at night, but I do have palpitations too and it does eventually settle down. I am asthmatic too so I don't know if it's related to that or HMS.

Lindsey

[t4curtis]

sopvik the thing with the blacking out has been explained to me that the connective tissues that make up your veins is just as affected by heds/hms as every other connective tissue as in it has less (not more as most people think) elasticity and so when sitting for periods and then standing the veins in a "normal" person would constrict tightly and quite forcefully to "shoot" enough blood upwards to counteract teh lowering of blood pressure, but in us the veins are made up of the same bad connective tissue and thereby dont always have the strength ( i think) to "shoot" the blood up so we black out, i know personally i just lose my vision but i dont fully pass out, my dr calls it orthostatic (upon standing) hypotension (blood pressure) they dont tend to diagnose it in this country so they dont treat it either, but the more i look into it the more it would appear there may be links with heds, but then there seems to be lots of that out there!!!! what you describe with the breathing is also something i get, where you "forget" to breath and i do think all 3 things black outs, breathing, walking is part of the autonomic things. Hope this helps ! I am now off to search the posts for other things on autonomic and pots (postural orthostatic hypotension) this is when you get a racing heart aswell as the black outs etc, and has (from what i have read elsewhere) been linked with eds so much that they have been able to identify facial features of people who have both it may be worth your while looking it up aswell.

[Sez]

Hi, honey! I'm sorry that you're not feeling so good .

For a few years now, I have had occasional stabbing chest pains that make it difficult to breath, but I seem to convienently forget about it when I go to the doctors. I have actually just made an appointment to see the doctors on Friday so that I can mention it. It usually happens last thing at night and first thing in the morning.
I have also noticed, whilst reading this, that I breath out for ages - long after air has stopped being exhaled, and stay like that for a while until I realise I've stopped breathing and inhale again. Don't know if there's any connection to what you are querying, or if it's got anything to do with EDS at all, but, as with most things, I suppose there's grounds for it to be related to the connective tissue.

[antimatter]

I have also noticed the breathing out thing and what I can only describe as it being easier to lock the breathing in the out position afterwards rather than breathing in again. It's like I can easily set a valve in my throat to closed (maybe something to do with phlegm in the throat). Sometimes it feels like too much effort to make the muscles force breathing in again. Sometimes it is a defense against being around perfume, other times, it just seems like my body is trying an experiment because it is fun, but I have never actually passed out and I've always started again without always noticing.

I have noticed what seems like my chest muscles trying to breathe even when things are locked. I think that there are people out there who can control their breathing for things like diving and meditation, and I have often wondered how long I can keep the locked state. However, it seems like a silly thing to deprive this body of oxygen when it is having a tough enough time without any help.

I didn't know that anybody else did that too...thanks for letting me know.

...antimatter

[t4curtis]

i have the breathing out thing too, my hubby always talks about how he might breathe 4 breaths to each one of mine, it is just like you said you breathe out and tehn dont breathe in again untill you realise you arent breathing lol, again though i have always just put it down to the autonomic thing as i know i am affected by it.

[Boo]

I think the breathing thing is related to HMS - I was only diagnosed last week by a rheumy and one of the things he asked me was about breathing, sleeping and snoring and he said two things that are possibly pertinent to this discussion - that sleep apnoea [sp?] is common amongst HMS sufferers as is the associated snoring and he asked what type of snoring I tend to do and he said if it was an issue they could do a test where I wear a monitor and sleep for a while and they download the readings. I do normal rhythmic snoring, so the conversation got diverted and I never asked him about this again as I'd intended. He said HMS patients often hold their breath in their sleep until their body forces them to breath again.

He also said another interesting thing - that HMS sufferers tend to be very body aware. He said the body does thousands of calculations at a time about temperature, what to do to the skin surface, whether to sweat, adjusting the eyes for the light levels, how much water to excrete from the kidneys etc. etc. etc. and he said most people are totally oblivious to what their body is up to all the time - but HMS patients tend to be much more aware of their body doing things.

This came about as we were discussing palpitations and he got out the notes from the cardiologist and the various ECGs I've had recently (long before I even heard of HMS) - which apparently show a very healthy heart, despite me spending a life time telling doctors that it does weird things, which have been investigated several times without anything showing up. I told him how the cardiologist was rather surprised that when he couldn't find my pulse and I just sat there, tilted his watch to me, counted from my heart actually beating and told him it. He said he'd never seen anyone do that before. I said I can feel every beat all the time. He then found a pulse and checked it and got exactly the same rate.

The rheumy laughed and said that was absolutely typical of HMS patients, they are very sensitive to their own body functions. I too have issues with breathing - if I become aware of it and think about it too much, I can't do it - which makes me panic and makes it even worse. Especially in bed at night as I try to get to sleep, I've often sat upright gasping for breath as I've been unable to breath in as I seem to have forgotten how to. I sometimes wake choking too. Another doctor some years ago told me that was just because I was fat, the weight of all my flesh closed the tubes - my own fat was suffocating me.

[hannah]

WOW Boo. That is really fascinating! and it makes a lot of sense - I told the Dr when at hospital that I could feel my heartbeat sometimes, they said when it does it again we will do a ECG - so it did it again, I told the nurse, and she took my pulse and said it was fine. I then realised they thought I meant my heart was going really fast - It was really just beating normally - just I could feel it. Isn't it odd that we can have poor proprioception and not know where our limbs are, but actually have accurate knowledge of useless things like what our heart is doing?

[Sue New]

Hi Boo,

The relationship between HMS and Sleep Apnea is interesting. I have been telling various Drs for ages that I often wake up in the night gasping for breath or choking and it has crossed my mind on occasion whether this is anything to do with Sleep Apnea. At the moment my problem is thought to be due to my Goitre pressing on my windpipe and oesophagus and/or my Hiatus Hernia - I finally have an appointment about this for April. I think now I have heard it mentioned there may be a connection, I will raise this with the consultant then.

Take care,

Sue.

[antimatter]

Thank you Boo,

I hope that my rheumatologist will take such things as seriously. I remember mentioning to the technician doing my echocardiogram that I could lock my breathing, and I wondered if it was possible to not bother starting again (because they asked me to hold my breath when taking some readings). I basically got laughed at and told that the body always starts again. I didn't test the theory though. The echocardiogram turned out fine as you may expect.

I have woken up a couple of times gasping for breath and unable to swallow, but that could be attributable to allergies.

I am very aware of my eyes trying to adjust for light levels, and I often cannot do it successfully (especially in grocery stores). I wonder if it is hms people who are more likely to detect the flicker in led bulbs plugged into a wall outlet for this sort of reason (I am not sure if the cycle rate is different over here). We were going to buy an led tree, but there seemed to be something too creepy about it...

It seems that even though I may be too aware of how the body is functioning, if I am distracted it seems to go haywire (especially the sweating, temperature regulation, breathing and speaking)...and people wonder why I get grumpy when they insist that I have to concentrate to talk to them (okay, i am guilty of that with my husband too...gotta work on that )

hmm...this may be why sensory issues are so prevalent here...

...antimatter

[Shadowlady]

Fascinating post Boo! Thank you

I can usually take my pulse like that too! (Unless it's noisy and there's stuff going on).

I've been thinking about my ribs more lately, instead of resolutely tring to ignore them, and I've kinda come up with a theory about my breathing. Every once in a while, I'll suddenly notice that I'm not breathing at all, my lungs are near totally deflated when this happens, and my rib cage is at it's smallest - like I've breathed out a bit too much, and my ribs just haven't risen again, as though my ability to breathe automatically has gone off-line. I think that perhaps, inadvertantly, I've been using my ribcage in a 'too exhaled' small position, but actually, my ribs are much more comfy when I take a deeper breath, and breathe in and out from a 'more inhaled' large position ... have I explained that clearly? My thinking is that my muscles have slowly got used to working in an 'incorrect overly exhaled position', much the same as happens with my other joints. I'm working on doing some deep breathing, and trying to keep my rib cage bigger, to see if this helps, and maybe, perhaps, hopefully, my ribs won't be quite as grumpy as they have been of late. My back also feels better when I hold a deeper breath. I wonder if proprioception issues with the muscles mean that the autonomic nervous system isn't getting the feedback it needs to function efficiently?

This is just the kind of theorising that gets Doctors looking at me like I'm a nutter, so ... what do you guys think? Is it possible? Does anyone get similar?

Best wishes,
S

P.s. Antimatter - check out the are you hypersensitive thread in related conditions, sorry, no time to link.