Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Saturday, 14 November 2009

Compared to the normal ranges for my age, I'm dead ...

After yet another "funny turn" the other week and because I'm still trying to decide if it would be wise (or not) to invest in a treadmill to get some regular walking exercise and, after reading Adrienne Dellwo's post on Oct 30th, Chronic Fatigue Syndrome, Exercise & the Heart, where the good doctor says, "Walk, live, but no exercise until you're at a 7, because if you exercise before that you're going to go backwards.", I thought I'd get myself a heart rate monitor. 

While I was at it, I thought it may as well be able to monitor blood pressure as well as heart rate and, if there was anything untoward, the readings could be handy when next I was talking to my doctor.

So, for the last few days I've been collecting data:

Date Systolic Diastolic Pulse
11/11/09 106 60 56
12/11/09 100 62 50
13/11/09 93 63 54
14/11/09 109 60 78

According to the chart here, the minimum blood pressure for my age range should be 116/81, but as you can see, I don't come anywhere near the minimum in any of the readings.

Still, at least today I had a pulse! That, I think, may be because I didn't wait quite so long after getting up and doing something (bathroom / breakfast) than I had on the previous days.

None of these were taken right after sleeping or sitting for a lengthy period.

My blood pressure was taken in the surgery when I registered with the doctor here in September 2008, at which time it gave a relatively high reading, 140/90. That surprised me, but, in retrospect, I think I would put it down to the pain and exhaustion of getting to the doctor's surgery, waiting, sitting uncomfortably, etc. I'm certainly not nervous in social situations, nor suffer white coat syndrome, so I doubt that contributed. That was the only time I've ever had a high reading, but I wanted to keep my eye on it, as my father had been treated for high blood pressure.

Back in the day when I was still a human being, my blood pressure was checked regularly when I was taking the contraceptive pill. (Birth control pills can increase the risk for high blood pressure, especially users who are older than 35, obese, and/or smoke - and I was any one or all of those at any one time.) Despite this, almost every time the reading would be on the relatively low side of ideal at 110/70. When home monitoring machines first became widely available about 15 years ago, I remember one of my neighbours getting one and we were playing with it. I just happened to say that, usually, mine comes out at 110/70. She checked it and we laughed, because it was 110/70.

Given the circumstances, I was more than happy with that level.

Of course, I'm older now and, although my weight has gone up, I no longer take the contraceptive pill (haven't had a need for them for more than 12 years) and I gave up smoking. And, having eliminated those, my *normal* blood pressure does seem to have dropped even further.

It's just not normal for my age.

And while I know this is good news and does not indicate anything immediately life-threatening, I do think it begins to explain many of my symptoms. As these have been shown to be linked with ME/CFS, the readings also go towards, once again, confirming that diagnosis: 

Comparison of heart rate variability in patients with chronic fatigue syndrome and controls: "Recent studies have reported a close association between chronic fatigue syndrome and neurally mediated hypotension. We hypothesized that this association may result from an abnormality in autonomic function among patients with chronic fatigue syndrome, which may be detectable using an analysis of heart rate variability." (My emphasis.)

Again, I can claim all of the Neurally Mediated Hypotension symptoms. NMH, it says here, typically occurs in susceptible individuals in the following situations:
  • after prolonged periods of quiet upright posture (such as standing in a queue, standing in a shower, or even sitting for long periods),
  • after being in a warm environment (such as in hot summer weather, a hot crowded room, a hot shower/ bath),
  • immediately after exercise
  • after emotionally stressful events
  • after eating, when blood flow has shifted to the gut during the process of digestion.
Again, tick "all of the above." (See also Orthostatic intolerance.)

Although I can stay on my feet for longer if I keep moving, as in walking, the longest I can stand still without starting to feel nauseated, lightheaded, weak in the limbs and an overwhelming need to lie down is now certainly less than 10 seconds. Of course, I often have to maintain it longer than that, which means I often feel very ill indeed. Hence, I avoid having to wait at bus stops where there is nowhere to sit, I no longer cook things that require me to stand and stir them and for the 3 minutes that my porridge takes in the microwave each morning, I have to go and sit down.

This has got worse over the years and, most markedly with the increase in all of my symptoms over the last year or so, but I can definitely trace the symptoms of orthostatic intolerance back to when I had Glandular Fever (mono) when I was 16. This was in 1973 and when I left school that summer, I went to work as a window dresser in a shop. The only problem was that they also wanted me to serve in the shop in the afternoons and I simply could NOT stand because of these symptoms, so I left after 3 weeks and took jobs sitting in offices.

Until we had a power shower fitted that allows me to shower in a sufficiently short time, I couldn't risk showering unless it was unavoidable, because it took so long with the low water pressure that I was having trouble balancing and staying upright long enough. I had to take a shower before I could go out, but once I'd had a shower, I was in no fit state to leave the house. I wont go into the insults, crap and arguments it took to get this - it took a year - but be assured that it was not installed just to "make her happy," (her meaning me) as my mother told one of her believers. It was a medical necessity - so much so, I was on the brink of calling in Social Services and a lawyer.

This year has proven, once again, that the combination of humidity and warm temperatures is something my body cannot tolerate. In the UK, I'm not warm until 21C, but I become intolerably overheated and begin to get these symptoms when the temperature reaches 23C. Whereas, in the drier heat in the Canaries, I could tolerate up to 35C before my brain melted.

Pulse rate: say Saga, "The average resting heart rate for an adult is between 60 and 100 beats per minute, while well-conditioned athletes can achieve between 40 and 60 beats per minute.", they add, "Generally the lower it is, the fitter you are - unless you have a pacemaker or heart disease." Which means either I'm super-fit (NOT) or, "Houston, we have a problem!"
Bradycardia (Greek βραδυκαρδία, bradykardía, "heart slowness"), as applied to adult medicine, is defined as a resting heart rate of under 60 beats per minute, though it is seldom symptomatic until the rate drops below 50 beat/min.
Trained athletes or young healthy individuals may also have a slow resting heart rate (e.g. professional cyclist Miguel Indurain had a resting heart rate of 28 beats per minute). Resting bradycardia is often considered normal if the individual has no other symptoms such as fatigue, weakness, dizziness, lightheadedness, fainting, chest discomfort, palpitations or shortness of breath associated with it.
Well, I'm certainly not a trained athlete nor a young healthy individual and yes, I do get almost all of the symptoms listed there. I don't usually outright faint, but everything but. I wish I did faint actually, because staying conscious to suffer all the other symptoms and feeling as unwell as it makes me feel is no damn party. Actually, it's unbearable and very frightening.

I've checked my readings again today and confirmed that just a walk to the kitchen and back, approximately half a dozen yards, each way, on the flat (and not exerting myself there), raises my heart rate by at least 20 bpm. What I need to check next is what effect a greater level of exertion - that *impossible yet unavoidable* one mile walk, for instance - has on my heart rate.

It would not be beyond the bounds of the imagination to expect this to raise it by at least another 10 points. Then we may be looking at Postural orthostatic tachycardia syndrome (often referred to as just postural tachycardia syndrome or POTS), which often co-habits with ME/CFS, the hallmark symptom of which "is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 10 minutes of head-up tilt." And this often comes with a wide variety of symptoms associated with hypotension (low blood pressure), all of which (bar the actual fainting), I suffer all of the time.

This article on Pacing by Numbers: using your heart rate to stay inside the energy envelope, suggests that monitoring has several benefits. Has to be worth doing.

And, whilst I don't fancy any of the drug treatments that might be prescribed to treat this, I can increase my fluid (not by much, I already manage my 8 glasses per day) and salt intake.

Actually, because salt is generally touted as bad, I have tended to avoid it like the plague. Because of this, I don't eat processed foods, I don't use salt in cooking, I even avoid stock cubes because they can contain a lot of salt. The only time I add salt to food on the plate is on a salad.

All that said, there is still a massive problem. I think I should discuss this with my GP, so we can eliminate any other problems, but assuming I'm right in my self-diagnosis (I don't claim any ability, but I have been proven right enough times already about it), this is precisely the sort of problem that leads you to get sectioned or to die from ME in the UK. It may be better to keep quiet!

Hobson's Prescription Choice

When is a choice not a choice?

A: When it's offered on the repeat prescription order form at my doctor's website.
My doctor's surgery is over a mile away, as are all of the pharmacies. There are very few buses that pass any of them, so generally, I have to walk. As one outing per week is the absolute maximum I can manage - that will cost me 5 days recovering and one resting before I am able to tackle the next - I plan carefully to maximise what I do on any one outing.

As I couldn't go out twice in one week - oh, I have tried and the resultant crash and pain was unbelievably severe and unbearable - I'll order my prescription a week (they only want 48 hours notice) in advance of whenever my next outing is, so I can pick it up while passing. (And I'm sufficiently organized that I get my Google calendar to send me emails to remind me when to order another repeat prescription and when and where to pick it up.)

Last time I had an appointment at a hospital that I needed to get to by train, so I chose the chemist that I would pass on the way to the station and had the prescription sent there. All I had to do was walk in, tell them my name and collect it, no waiting around. Brilliant! So far, so wonderful, eh? Not so fast!

This time, however, because the weather is too bad for me to venture out at all and I haven't been feeling well enough anyway, I ordered my prescription with my customary week's grace, only this time I elected to have it sent to the chemist further down the main street, a couple of doors down from the charity shop where my mother works, so she could pop in and collect it for me.

If I had been able to go out myself, that was the day of the meeting of my pain group and this second chemist was also the nearest to there for me to have been able to pick it up myself on my way to the meeting. If I'd had to collect the prescription from the surgery or the previous chemist, I'd have had to walk right across town, as well as, potentially, the mile and a bit to get there. If I'd had some other appointment or my mother had been going shopping elsewhere, another of the chemists may have been more suitable and I don't think it wholly unreasonable to be able choose the one that is most convenient each time.

The surgery website offers a drop-down list of chemists, so it looks like patients have a choice, drop-down lists on internet forms are meant to offer choices, so I attempted to avail myself of it, for reasons that I feel make perfect sense.

On Thursday, mother tried to collect the prescription, but the relevant chemist had nothing. I phoned to double check, quoting the date I'd ordered it and they confirmed that had nothing on their computer. So I phoned the surgery to ask them to track it. After a bit of going round in circles, checking to see if maybe it had gone to the first chemist and not the second and without actually admitting what had happened, she finally said that they had the prescription in the surgery and I would have to pick it up from there. In other words, they'd "decided" not to send the prescription to the chemist I'd chosen, but didn't let me know.

Collecting it from the surgery isn't ideal and is something I try to avoid, unless I'm actually going to see the doctor there, because that means waiting around twice. There's usually a long queue in the surgery to collect the prescription, then another in the chemist for 20 - 30 minutes for the drugs to be dispensed. If there is a chair free in there it's a miracle, but even if there is, it causes me great pain to sit for the length of time required. There is no way I can stand in line.

Of course I told the receptionist why I had chosen the chemist I had, but the upshot is that - despite the appearance of a choice being offered - you can't swap and change chemist, because that would be "too confusing", she says. I fail to see why. For whom exactly? Not to me, it isn't. And that's it - she's going to leave it set for me to collect from the surgery in future, which means double journeys.

Not having these choices is going to cause me lots of inconvenience, plus additional pain and exhaustion every time I have to wait around or go to a location I wasn't already passing. Yes, I should have realized it would be a total misconception to assume that the National Health Service was in any way supposed to provide a service to the patient! / Rant over.