CHAOSTOCOSMOS

Wednesday, 30 September 2009

The exercise conundrum

image For fibromyalgia, the advice is to get gentle exercise to keep moving and avoid ceasing up. This is essential and no-one advocates this more than I. In my previous life in Tenerife, the generally favourable weather and having a dog meant that most days I went for many, frequent short walks - always within the limits of my abilities - that kept me functioning but didn't cause undue strain.

This is not the same as "the more you do, the more you can do" that applies to most conditions and to healthy people. Fibromyalgia limits have to be respected. As Adrienne Dellwo points out:

For us, however, the last thing we should do is push ourselves to the point of pain. Same goes for exhaustion. The reason for that difference is central sensitization, which is generally thought to be an important part of FMS and ME/CFS.

Indeed, I have a leaflet here someplace - from a local source - which reiterates that, even for healthy people - you should stop exercise if it hurts, or you feel dizzy, etc.

Hell, if I were to stop when it hurts, or I feel dizzy and begin to shake from overexertion, most of the time I wouldn't even make it to the bathroom. As it is, I get breathless going to the kitchen and that's only about a dozen paces away, on the same level in a bungalow!

With Chronic Fatigue Syndrome (Myalgic Encephalomyelitis), we read much about treatment in the UK, which advocates Graded Exercise Therapy - mostly referencing around 4,000 studies which show why this is actually harmful and that it can cause permanent worsening of symptoms.

I'm diagnosed with and have symptoms of both FMS and ME/CFS, so which is appropriate?

My own experience is that if I pass my limits, I pay for it with hellish flares. If I attempt to ignore my instincts and follow advice from the unenlightened to keep doing more, I do not find myself gradually able to do more, but quickly less. I hit the brick wall earlier and become less able, until I have no alternative but to take as complete rest as I can achieve until the flare subsides.

That is more or less what has happened this summer. In June / July, I attended a weekly course that was a mile walk and an 8 mile bus ride (each way). Add to that a few hours on very unsuitable seating and this one afternoon was really more than I could cope with in any one week. I made sure that I picked up any shopping items I needed in this same trip, but I did also have other commitments to attend in that time; doctors, dentist, help groups, so I was walking an average of 3 - 5 miles in each of those weeks. Now I know that 3 - 5 miles is 3 - 5 miles more than most averagely healthy people in the UK, yet still my GP advised me to exercise more!

This totally ignores me as an individual, the fact that I already get far more exercise than most "average folk" and that he's "preaching to the choir" - actually I'm not some lazy lardarse - once upon a time, I used to regularly go swimming, dance classes, running and weight-training, whilst doing a full-time job, having a social life and working part-time as a security guard.

By the end of those six weeks this year, I was so exhausted and in so much pain that I can bearly describe it. It's been like having all over toothache, with constant headache and nausea. It does not respond to drugs. It has been far too intrusive to ignore or be distracted from. My sleep has been disturbed, intermittent and of poor quality. My concentration has been so affected that most days I couldn't even follow the plot of a soap-opera and with the headaches and disturbed vision, most of the time I could only lie flat, with my eyes closed, hoping the pain / nausea would pass.

And mostly it didn't pass. It has been tear-inducing unbearable.

Eventually, after following my instincts to rest until I felt a bit better, in the last week or so, I've finally managed 2 days where I have been able to sit up for more than 15 minutes at a time.

And now that I am stuck in the inclement English climate, even when it's warm enough to go out and even when it is not actually raining, it's unbearably humid. In winter, my muscles just freeze up and my joints lock painfully in the damp and cold, so I can not manage to walk at all.

In addition, being over a mile away from any amenities, not able to drive, scant (expensive) public transport (and no seats at bus stops *), means that to do the simplest of tasks - like visiting the doctor or getting fresh food items - requires that I go way, way beyond my limits to cause such terrible flares of symptoms that it becomes impossible to function, let alone stay active.

It isn't always possible to get buses, mostly because there are so few they don't appear at the times one wants them. Buses hurt me anyway with all the jolting and, I cannot stand at bus stops where there are no seats. Walking hurts like hell, but it hurts less than standing.

* I've thought about a shooting stick or a folding seat, but I cannot carry anything. I brought a quiche back from the local corner store (300 yards) once and my wrist hurt for two days.

My balance is dreadful - I keep tripping over "fresh air" - and I get so much pain in my hip that I feel it might be of considerable benefit to me to take some of the weight off it and steady myself with a stick, but I don't, because I know my wrists can't take the additional strain.

Because of the pain in my wrists, I bought supports for them to try to help alleviate the problem that way, but within hours of wearing them, my skin had reacted to them, dried up, become itchy and cracked to resemble the skin of a lizard and it hurt like a 1st degree burn.

During the last two weeks, since I went to the hospital to get my hip x-rayed, I had not been out. The first few days, because I could no more move after that 2-bus trip than I could have flapped my arms to fly to the moon and, the last few to rest up in anticipation of another outing.

Yesterday, I needed to go to the doctor's surgery to get the results of that x-ray, to the health shop for some supplements and to a supermarket for fresh salad, etc. On the way from one to another, I purchased one item in a pet shop and looked, briefly, in a couple of charity shops. I reckon I was out no more than 2 1/2 hours in total. Hardly an excessive exertion.

Just from this I was in so much pain and so exhausted that I had to get a taxi home. I staggered to the taxi rank. I was dripping in sweat so much that my clothes were damp and sticking to me. My face was red and flushed. I was breathless, I could hardly put one foot in front of the other and I was so hot, that had it not been for the sweat, I might have been worried that I could spontaneously combust. And I simply cannot describe to you how ill I felt with nausea and shaking.

In fact, I had begun slowing up, exhausted, dizzy, nauseous and physically shaking from the "over-exertion" on the way out - about 200 - 250 yards from the house. That is my limit, but I cannot restrict myself to this; I am required to go to doctors, hospitals, benefits agencies, etc.

Despite all this, my intuition tells me to continue with what I know worked for me before: frequent, short bursts of non-straining, gentle exercise, such as walking. And I would do if the climate would let me - that, I guess I could overcome by buying a treadmill - although that could be a waste when I'm already rendered totally non-functional by the M.E. and those essential trips.

It's very much a Catch 22 situation that I cannot see a way around. Ideas anyone?

Pamela is a former accountant, recovering journalist and international cat herder, disabled and chronically sick with Myalgic Encephalomyelitis, Fibromyalgia and Cervical spondylosis, fluent in three languages; English, Spanish and Rubbish. Mostly writes in the latter. She likes Genealogy, Model Railways and Cats.

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