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.

Saturday, 31 October 2009

Today's pain menu

Laying awake this morning (hungry cats staring at me earnestly), for ages I couldn't move because my limbs felt as if they were made of lead, however, if you're looking for pain in any of the following areas, I haz dem:
  1. Head - that sort of feverish fluey headache.
  2. Sore throat.
  3. Neck - still, again, ad nauseum.
  4. Shoulder - joints stiff, achy and clunky.
  5. Upper arms - burning ache and heaviness.
  6. Lower arms and wrists - carpal tunnel.
  7. Hands - stabbing pain in palms like crucifixion.
  8. Upper back beneath shoulder blades - dull ache.
  9. Lower back - just excruciating pain.
  10. Both hip joints - gnawing pain like toothache. The right is the one I fell on 8 1/2 years ago. Pain in the left is a new development.
  11. Thigh muscles - cold, contracted, solid and yet burning.
  12. Knees - tear-inducingly painful and more so to put weight on.
  13. Shins - feel like they've been bruised and beaten with a baseball bat.
  14. Ankles - clunking, sore, achy joints.
  15. Feet - all manner of aches, pains, sores and burning.
Let me reiterate that this was the selection of symptoms I could already feel when I woke up and was still lying in my comfortable bed (thanks to a natural latex mattress.) I hadn't even had the chance to get up and hurt myself and, this general selection is nothing at all unusual.

When I do get up, I feel fluey, weak, lightheaded and my legs start to give way, so for most of the day, yet again (as in 6 days out of 7), I could do no more than an impression of the dog pictured!

Interesting aside: When my mother was waiting at her outpatients appointment the other day, she said she sat next to a man who was going "Oh and ah" in pain. The nurses, you know medically trained professionals, she said, had asked him if he was alright - they could obviously see for themselves that he was in pain - and asked him if he wanted any painkillers.

He declined the drugs, saying that, mostly, they didn't work.

Whenever I've been to any of the many hospital appointments recently, even when I don't notice it myself, doctors, nurses, radiologists, etc., alike all notice that I am breathless and showing visible signs of being in pain. They always ask me if I'm OK and if I need anything too. Mostly this takes me by surprise and I just tell them I have fibromyalgia and ME and that it's "normal" for me.

This man had fibromyalgia too. So mother asks him, "Where does it hurt?"

And (unsurprisingly) his reply was, "Tell me where it doesn't hurt!"

I keep stressing this to her: fibromyalgia hurts anywhere and everywhere.

And that it is possible to tell when someone is in pain.

And that drugs do not kill fibromyalgia pain.

It's like beating my head against a brick wall, because she seems to understand the words, but has no concept of their meaning and implications. Learning what fibromyalgia is and knowing that I have it, provokes no reaction. It's like, "the lights are on, but nobody's home."

(No, she isn't stupid, she totally lacks empathy and is far too engrossed in herself. And yes, my critics will be foaming at the mouth now. The difference is, she just says what she thinks about me. I can back my comments up with solid research, written evidence and witnesses.)

The doctors apparently want this man to lose weight. They do this to me too. First fact, the ONLY reason I have put on weight (it's been many years since I was able to do an impression of a stick insect, if I ever did and the fibromyalgia itself caused some increase, but not all) in the first place is because the first thing I was prescribed was 'effin Amitriptyline (for every one person this has helped, I've read 1000 reports of people who would rather die than take it.)

One of the known side-effects for this drug is excessive weight gain.

But it's cheap, so the NHS pops it out like Smarties.

Then they bitch at us about getting exercise and losing weight - when you can hardly move, let alone exercise and with ME/CFS too, shouldn't do so. I know there's no cure, but you'd think there was something they could offer us (other than pseudo-psychology) and this broken record!

Friday, 30 October 2009

A right royal pain in the neck

One of the many, many reasons I had to stop driving a few years ago was the pain and loss of movement in my neck (this was also noted and confirmed by my Rheumatologist.) For one thing, I could no longer look over my shoulder for merging into traffic. Secondly, if I tried to do so, the pain and spasms were too much to bear and could easily have caused me to lose control of the vehicle and cause an accident. 

This is something that's been affecting me, to some degree, for years, since I suffered a whiplash injury in a head-on collision in the 80s (I was only a passenger), but like all my other symptoms has grown with the fibromyalgia and, has worsened several-fold since I've been forced to put up with conditions in the UK. For a while this year, I had it under some control, but coinciding roughly with the onset of autumn this month, the pain came back again with a vengeance.

Apart from the restricted movement and the pain the worst of it is a horrible bone-on-bone grinding noise in my cervical vertebra whenever I move my head. 

What started it off again was something so seemingly innocuous too: I went to the monthly self-help meeting of our local pain group (ironically). Previously, we've sat around a circular table, so one can see and interact with most of the people quite easily. This time, a long rectangular arrangement had been set out using two tables and so, to talk to people to my left and right, required a good degree of movement. I was only there for an hour or so and, I was careful to move my whole torso and not just my neck as often as I could, but the damage was done.

There was about a week or so before my next outing (to the gynaecologist), so I set to work to try to relieve it as best I could. I have special neck pillows, a TENS machine (which I've since had to ditch), specific exercises, relaxation techniques and a Wheat Bag Heat Pack. (Which is great, but only affords temporary relief.)

The pain had just subsided enough to get below the category of *excruciating* the day before I was due to go out again and, taking the bus rather than walk the mile + to the station, the second the bus moved, I heard the "crack" in my neck and was in agony again. A week later I had to go back to the same hospital (same floor too and no, they couldn't do it on the same day) and the day before, I'd merely leaned on the kitchen work surface (because I was having trouble standing unaided) and looked up everso slightly. Bang, crack, agony in my neck once more, not helped by outing. Now the pain seems to have taken up (probably winter) residence.

Return of the chest pains

Whether exacerbated by the other day's increase in brain fog and this is part of the crash I was suspecting might occur, I don't know, but on Wednesday night, after not having used it for some time, I used my TENS machine as I'd been having a lot of extra pain and stiffness in my neck and shoulders over the last couple of weeks (another long story for later).

On a few occasions before, I've had chest pains after using the TENS machine, but when one gets chest pains regularly and they're part of the ME anyway and are only one of far too many other aches and pains to count, one never quite knows what is causing them, or whether to worry. Instinctively, I probably should.

Immediately after using the machine I felt a tightness in my chest. Shortly after that I went to sleep, but yesterday morning I woke up with notable tightness around my chest, pain and numbness down my left arm and a feeling like I'd been kicked and winded in the centre of my back between my shoulder blades. My throat and chest tightened more if I tried to take a deep breath.

Nevertheless, I dragged my sorry fat arse out of bed to feed the hungry cats then get my own breakfast. I'd got as far as getting myself water for taking medication, had warmed up my wheat bag in the microwave to hopefully help with the neck and shoulder pain and made my coffee, so I took the drinks to the bedroom while my porridge was cooking in the microwave.

On the way back to the kitchen, I was waylaid by the furball formerly known as "the baby who refuses to be put down", weaving in front of me and shaking his ample butt and tail in my direction, whilst looking up at me with sad eyes and crying plaintively. So I picked him up and snuggled him, turning on the baby talk - this quickly embarrasses him into shutting up - put him down, made my way back to the kitchen (this is all of a few paces): in all, hardly major exertions.

On my way towards the microwave, I grabbed a spoon from the draw with which to eat my boring breakfast gruel, but I only got half way there when I suddenly felt as if I'd been kicked by a mule in the solar plexus - so severely that my legs involuntarily buckled and twisted beneath me. It completely winded me and the pain around my chest increased 1000-fold. I grabbed hold of the work surface and slid myself down onto the floor to sit with my back against the wall.

There was also the incident with the nicotine patches when I gave up smoking 2 years ago and yesterday morning's episode was startlingly similar. So once more, based on my qualification as a first-aider, "... I put myself in the recommended half-sitting position with knees bent, tried not to panic and eventually the pain and constriction subsided and breathing became easier."

And yes, once again, it was bloody scary for a while there.

But that's not the end of the story ...

So, there I am, writhing on the kitchen floor - not something I do frequently, just for "fun" - trying to regain control of my basic functions, clearly having trouble breathing. I'm certain any reasonably compus-mentis person would have assumed from my appearance that I was in severe pain and in need of help. I couldn't even speak. Once I could speak, it was in breathless panting.

Meanwhile, mother was waiting for her lift to take her to a hospital outpatients checkup. She was hovering around the kitchen door, so there's a chance she even saw the whole incident, but she could certainly see me in trouble on the floor. All I could hear, while I'm down there thinking there's a chance I could die here, was "I hope this woman [the lift] hasn't forgotten me."

Ignoring me, mother went outside to look, came back in, then she thought / worried other things out loud, then she called the woman up to see if she was coming, then she announces she doesn't know what she was going to do. Still completely failing to acknowledge my predicament - I couldn't see her, but I knew she was approaching the kitchen - she asks, "What am I going to do?"

By this time, I could, just, wheeze out a few words. I told her she'd have to call a taxi. Well, actually, I told her not to worry, because I might need an ambulance first, then told her to get a 'kin taxi and get out of my sight, because I really couldn't believe that she was wittering on about her own non-urgent needs while I was laying on the floor in possibly life-threatening trouble.

Know what she said? In whining tone, "Well, I can't lift you. I can't do anything."

So the first is true. The second NEVER is and, even if it were, deciding to ignore the problem and pretend it isn't there, definitely is not the answer. Not if you're sane human anyway. And this is, by no means, an isolated incident.

By that time I could feel my heart pounding in my chest like it was hammering on my sternum to be let out. Involuntarily, I pushed my hand against my chest to *hold* it in. Even without my hand there, I could feel my pulse thudding up through my oesophagus, throat, neck and left arm, but I wasn't really sure what was causing it most; the original problem, or utter rage that my own mother could so totally, seemingly knowingly and wilfully, absolutely fail to react in any way to a what really could have been a genuine emergency involving her child. If I hadn't been there myself, I really would not have believed this had happened.

(And, no doubt there will be people who still don't believe me and will probably try to bully me into silence again because they think I shouldn't tell the truth publicly. They will be the same ones who do believe my mother portraying herself as the "victim". They really don't know the half.)

Mother got her taxi, I stayed down until I got my breath back, then crawled to bed and stayed there most of the day, did my best to switch my brain off and relax and even managed to sleep on and off, but the pounding pulse didn't subside until evening. Mother got me some water when I asked, but otherwise left me (without food) all day. I still had to cook dinner later, even though I could barely stand up. The severity of the chest pains has subsided now, but they return to some degree every time I get up today. I feel like I've done 10 rounds with Ali, been kicked and punched all over and feel absolutely washed out with zero energy.

It used to concern me a bit about having such an emergency when I lived on my own out in the wilds of Tenerife, but clearly, those circumstances did not increase the danger at all. This time, by the time I was capable of getting to a phone to get help myself, the emergency didn't seem so pressing. Next time I could die first.

Factors: viral heart damage could be linked to me/cfs. Warnings: "Before you use any brand of nicotine patch, make sure your doctor knows if you have, or have ever had, any of the following: chest pain from a heart condition (angina); heart attack; high blood pressure (severe); irregular heartbeat (arrhythmia); kidney disease; liver disease; overactive thyroid; skin disease; ulcers; or any other serious illness." In addition, although TENS machines are supposedly virtually side-effect free, they should not be used by people with "... certain types of heart disease." (Of course it was suggested by pain management. Of course I got rid of it!)