Lymphedema - A personal tale
I had absolutely no idea what lymphedema was and just how debilitating it could be.
Now I do. I am shocked at how widespread the problem is and yet that no-one, apart
from those who suffer from the illness, seems to know about it. I wish I had because
a little knowledge could have saved me a great deal of pain and discomfort. Let this
article serve as a cautionary tale of just how unpleasant, dangerous and prevalent
this illness is.
Aged thirty, a bit of a fitness enthusiast, almost never ill, it
had never occurred to me that one day all that might change. It did.
One day on my way to work I was involved in a car accident. I had been stopped by
the Police because of an accident up ahead of me but the car behind didn't slow and
I was hit from behind at around 100kph.
A few months later my body began to change. It began with my legs starting to swell
up as if I had been the victim of some creature's venom. My doctors pooh-poohed it
and essentially ignored my protestations. If only I had been more insistent then all
might not have been lost. I have since learnt that there are four stages to lymphedema
and, at stage 1, it is possible, with the correct treatment, to reverse it.
Shortly afterwards my legs blew up to about twice their normal size, the skin split
open and the flesh went septic. A lymphedema wound is not like a normal one in the
sense that it just will not heal. No matter how much you bandage it up, mop up the
fluid which constantly seeps out of the abscess or apply creams and salves, the skin
just will not knit.
My feet became so bloated that I could not wear shoes - even in the middle of winter.
I live in a mountainous area so it gets pretty cold - I had to have a heater under
my desk so that I could cope.
The soles of my feet became unbearably sore - it was as if they had been beaten by
a truncheon, roasted with a welding torch and then had a screwdriver rammed into them.
It was so bad that every step made me scream and I would gingerly edge my way from
place to place with my face screwed up in agony. Such pain is akin to that experienced
by diabetics (and is often misdiagnosed as being diabetes). It is also very common
among lymphedema sufferers and I have since met many who will guard their affected
limbs with a ferocity that any special services commander would be proud of.
The extra weight of the lymphedema in my legs and the pain caused by the sore feet
caused me to become progressively more sedentary and, as a direct consequence, my
weight ballooned. When I say, 'ballooned', I am talking about an increase of over
100%. This sudden onrush of weight can give doctors the opportunity they are looking
for to avoid treating you. "Well, Mr X, if you are obese you only have yourself to
blame. We cannot help you - it's just a question of willpower. Nurse - next patient,
This ridiculous prejudice even extended to the Emergency Department of my local hospital
when the open sores in my legs were in the process of turning gangrenous. I was sent
packing without treatment (because of the 'obesity' issue) but I was fortunate enough
to receive the ministrations of a nurse passing our office and whom my wife had hailed.
Since then I have had several major infections - these are perfectly common for lymphedema
sufferers. One of my legs turned completely cerise and was red-hot to the touch. I
recorded a temperature of 42C (107.6F) when my fever was actually declining. Needless
to say these infections are life-threatening and, although lymphedema itself is not
a fatal illness, the fevers can be.
Video - Life with Lymphedema Part 1
Not by this article's author.
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Lymphedema is for life if it is not caught in the early stages. If my first doctor
had paid attention to the symptoms and acted appropriately I might have made a full
recovery. The problem is that no-one seems to know much about lymphedema yet it is
reckoned that nearly 7 million people in the US alone suffer from it in one form or
Unless medicine comes up with a cure then I will need to go for regular treatment
every year for the rest of my life as well as being on the constant look-out for the
onset of the extreme fevers that can appear overnight.
The treatment which I receive at a specialist clinic consists of regular and vigorous
massage, being wrapped in tight bandages (like an Egyptian Mummy) so that any movement
is nigh on impossible and nearly overdosing on diuretics. Even with the treatment,
I still suffer with acute soreness in the soles of my feet, severely swollen legs
and the ever-present spectre of infection.
My story may seem a bit extreme but I have met many other lymphedema patients whose
own experiences are at least on par with my own. It is a terrible and lifelong disease
which can happen to anyone at any time.
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