June 24, 2012 at 9:56 pm #237Give My Daughter the Shot!Participant
I have a multitude of heart rate irregularities, varying test results, randomly break into excessive heat and sweat (that is newer for me), have always been so freezing cold on my hands and feet that it freaks people out (cold hands warm heart – and I blew right over that), blah blah blah.
I’m only going to ask about one and, bear with me please, because my body is shutting down on me.
I usually limit anything I do to being able to sit peacefully and not much more than an hour can I ‘make it’. Today I had company and spent about 4 or 5 hours talking, mostly sitting but not wanting to look like a couch potato either so I did move around here and there (like the normal people).
I could drop, oh my gosh! I’ve already fallen deeply asleep and am just staggering around in a fuzzy, grumpy, state of profoundly miserable exhaustion. Worst part is that I’ve noticed that this will last for 2-3 days (I hate to admit to the actual 3 because I am still wishful thinking that it’ll only be 2). Maybe it could just disappear right now. I hate this!!!
Genetic doctor mentioned CFS.
My question; Using my relatively newly aquired Mio heart rate watch, I’d noticed that my resting heart rate was in the mid to high 80s. Now that I am suffocating with exhaustion, I’m noticing that my resting rate now is low 60s. I have no idea of the accuracy of the watch but I’d checked it many times and resting was almost always in the 80s. Every time I’ve checked tonight is 60s. Just checked: 61.
I tried to check for POTS and my heart rate does rise up to the one-teens when I’m up BUT I don’t feel equally as badly that I think to check every time or on days when I don’t wear watch. I don’t think it’s happening to me 100% of the time. It’s as though some days I am forced to sit almost all day; try to do something menial – body forces me to sit repeat, repeat, repeat – and I can’t stay upright for more than a few minutes at a time. Also can’t lean to pick up a dropped barrett, tissue, paper – basically, just can’t lean and joints hurt too much to bend. You’ve gotta be kidding, right? To me, my heartrate just seems to be very unpredictable and irregular – also, it is now seeming to pattern differently depending on how I feel – If I’m burning with sweat and heat for no reason, it’s faster (I’m a little fuzzed but pretty sure). If I’m collapsing, It’s slower (today, tonight anyway).
WHAT DOES IT MEAN? What is causing me so much disabling exhaustion? How do I make it go away?
If a resting heart rate would drop by 25 bpm, what would that mean??? Combined with suffocating exhaustion. Some mild heat flashes too and pressure in jaw and head. Mainly the horrendous, staggering exhaustion even after full last night’s sleep and 2 hr crash after visit. BTW, I’ve never been one who is able to nap. Does exhaustion just drop a heart rate? Does CFS drop a heart rate? What does that mean???? What is it??
Hypothyroid, EDS, IBS, cardiomyopathy, I’m actually too tired fibromyalgia, neuropathy, I’m sure more. Just struggling with every thought sucking the life (strength, energy) right out of me.June 25, 2012 at 7:02 pm #2484BarbaraParticipant
I know our condition can cause bradycardia (slow heartrate) as well as Tachycardia (fast heartrate). What that rate is, is dependant on our (malfunctioning) autonomic nervous system remember, so it may be temporarily maladjusted. Various other things can affect it including the level of our exhaustion. Staying alert in conversation, as with any intense brainwork, uses a lot of energy.
I’m going to ask what position you were sat in, in relation to your visitors ? I always find it exhausting when I have a group of visitors, particularly more so if I have to move my head or neck a lot, or if I have been sat with my head mainly to one side. I always make a point of sitting at the head of the table, so that I can chat with my head more or less straight forwards, believe me, this lessens the hassle afterwards.
My heartrate drops to low 60’s when I’m very tired, like my body is preparing to sleep and it’s very important that we listen to it. I know you say you can’t nap but I think your body is telling you to get your head and neck comfy and put your feet up, leave the clearing up until tomorrow! It’s all about supply and demand – you’re not currently in a position to supply so, you’ve no option but to limit the demand (or pay the consequences!).
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!June 25, 2012 at 8:30 pm #2486Give My Daughter the Shot!Participant
Per other injuries, I’ve been warned repetitively, by multiple educated doctors (when I was in better health, able to work and earn my insurance to cover proper medical care) – DO NOT FAVOR ONE OR THE OTHER SIDE OF MY BODY – DON’T LIMP (NO MATTER WHAT) -I KEEP MY HEAD, NECK, JAW, SHOULDERS STRAIGHT (DON’T HOLD PHONE WITH SHOULDER IS ONE EXAMPLE of a warning I received many years ago). I hadn’t thought of being careful as you’d mentioned (or under circumstances with visitors) BUT am always cautious that way due to past acute injuries/dislocations.
I would say that I was sitting in a position whereas I was able to look straight ahead, almost exclusively. Like a kid sitting strictly in a school chair since there was no back where I was sitting. I kept my body symmetrically ‘straight’ but did have to hold my own head up (and was aware of this). It’s tough when one has an intense desire to be ‘normal’ as I always had been before. I’m beginning to forget but, painfully, I still remember how much I’ve lost at this point.
Your mention of the autonomic dysfunction in completely ‘on target’! My body has been doing tons and tons of outrageously illogical and terrible things to me for the past few years. I’d finally awakened, burning and sweating, in the night and when I entered all of the horrid symptoms dysautonomia popped up – describing the nightmare that I’ve been living to a ‘T’! So mentally challenging to be ‘saddled’ with something so illogical that the human brain seems incapable of even grasping it. My brain, at least, isn’t ready to accept this huge ‘load’ nor does anyone else seem to comprehend the all emcompassing level of dysfunction. I can’t even find a doctor who ‘gets it’. But, YES, my body is constantly ‘shutting down’ and subjecting me to horrible, random dysfunctional troubles.
Do you know of any way of ‘fixing’ ANYTHING that will actually give me MORE FUNCTION versus having to succumb to low level functioning??
Thank you so much for your response. I will read and re-read. I need to re-train my brain to understand what is going on with my body because I am constantly ‘at odds’ with myself – which I am certain is using energy!December 1, 2012 at 2:38 am #3174sheilmolsonParticipant
Well if your heart rate beating is irregular then I would like to tell that you do your check up from Dr. Laman who is a specialist in cardiology and is helping people with physical, emotional, and spiritual heart problems as well as helping them to cure their stress problems by focusing on heart and changing the breathing. Dr. Laman has also published many books on heart disease.
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