This is a topic that is near to my heart. A little background is in order. I'm a UK citizen, married to a wonderful Latina wife, with two fantastic
sons, both under the age of fourteen. My wife has been my carer for the past eleven years, but things got really difficult around four years ago. I
have chronic pain syndrome, a severe case since four years ago, when my condition degenerated sharply, suddenly, leading to nine weeks of
hospitalisation. I had to relearn how to walk after being bedbound for that length of time. It took three years for me to achieve a reasonable
capacity for walking short distances using a crutch or walking stick. I still cannot walk more than around a fifty-hundred metres in one go, and if I
walk that distance, my pain flares up considerably, leaving me in a rather horrible condition for several hours/ even days thereafter. Chronic pain,
in my case, is treated with a combination of opioid & anti-epileptic medications, plus a tricyclic antidepressant - all of which have been proven to
have beneficial effects useful for pain management, even as part of a long-term regimen. I also benefit from use of a TENS machine, and use
relaxation/ self-hypnosis to assist also. For the sake of clarity, here's what the doctors have conceded, grudgingly, I am permitted to take every
day, for the rest of my life:
As a brief outlay of my symptoms, I experience regular (and most severe) hyperalgesia, which thoroughly incapacitates me; permanent sciatica,
permanent extensive localised neuropathic pain in my lower back, hips & legs. I have arthralgia, fybromyalgia affecting my legs only, and both
myoclonic & ordinary neuropathic spasms which affect my whole body at random, but more or less continually depending on the types of movement I make.
These endanger myself & my family, because I suddenly lose support from my legs, or lose control of my hands & fingers when I'm carrying a cup of hot
tea, for example
*** *** *** *** *** *** ***
Here's the thing. That prescription's not perfect, though it's certainly better than nothing. I had to really, really fight to keep these
medications at the levels you see. The doctors - almost everyone except my neurologist, and we're talking up to around twenty different senior
professionals, with different specialisms, in different medical establishments - wanted to remove or reduce every single medication, despite evidence
to prove that each medication, used carefully according to a very structured daily routine, acts in tandem with all the others, in a subtle dynamic of
harmony with my rest & activity actions each day - creating a state of moderate control of the worst of my symptoms, if I'm careful & don't overdo
things. The pain management consultant proved himself a liar by pretending that he never agreed to the levels of medication being used, when God
knows that he absolutely did. I recorded several consultations because I didn't trust him from the outset - and I was proved right to have done so.
A single General Practitioner at the local doctors' surgery stood up for me, and ensured I wasn't subjected to a politically motivated culling - which
would have destroyed me, and my family, considering that we had spent three years rebuilding our lives (and specifically my capacity to engage with
the world in a limited way) after the hospitalisation I referred to earlier.
Now the sad thing is, that in order to be of any use to my family, in any meaningful way, I often have to increase my doses above what is prescribed,
in order to send a big "# YOU" to my misbehaving brain & nervous system. It's literally like bashing my central nervous system over the head with a
frying pan, in such a way as to dull my neuropathic senses, in order to be of an apparently slightly more physically capable condition. Examples
would include if I have to sit through a Nativity play, or attend a sports day. Even these 'assisted' activities are always of a short duration,
despite the short-term boost of the extra pain control, which really saddens me - I haven't always been there in a properly meaningful way to support
my childrens' development. I thankfully don't have to go to drug dealers on the street in order to receive this occasional assistance with increased
medication requirements. I have a friend who helps me, who has access to these things, from people who don't really need them, and so he has no
qqualms about giving them to me for free. I see it as a Godsend - without the temporary 'crutch' these things provide, I would be forced to miss key
family events, almost all the time.
So anyway, that's enough about me. I include the above just so you get a feel for what sort of life I lead. To fully clarify (I apologise, I already
said "enough about me") it's almost entirely on my bed, or occasionally laid on a sofa, because sitting in a chair worsens my symptoms exponentially,
even after only a few minutes. For the record, I was diagnosed simply with 'Chronic Pain Syndrome, with incapacitating spasms', by a very competent &
thoughtful neurologist - one of only two medical professionals that I trust, considering the unfortunate stigma & associated prejudices/ injustices
which accompany serious chronic pain diagnoses, even within the wider medical professions. I cannot count the number of times I have been demeaned,
endangered (literally) or subjected to some measure of public degradation in some way by senior medical professionals after they learnt what my
Get to the #ing point already..!!!
So, the whole point of this thread, is to ask why, when I know that this condition affects millions to some degree or other, why are neurologists not
talking about the management & treatment of, or perhaps investigative research into potentially overcoming, this serious disorder?
I was checking out the science section of a popular podcast hub (Player FM
) & found myself at the neurology section.
There are several noteworthy podcasts listed, and I decided to take a look, to see if any interesting developments had arisen in the field of chronic
neuropathic pain management. I looked at the ones which report on & discuss articles & papers associated with the journal Nature; I looked at one
podcast which dealt with careful peer review discussions of all manner of journal articles/ papers; I looked further at the more general, slightly
more public-friendly podcasts, which, while still being thoroughly scientific, are geared more at communicating in a way that would be considered easy
listening for a serious professional neurologist, but also in a way that would be fascinating, if a little heady, for interested laymen. I read
through all of the historical podcasts, checking the subject material, obviously on the lookout for anything related to chronic pain management - I
went back YEARS, and would you believe that I found not one podcast on the subject of chronic neuropathic pain management/treatment.
I DID find, were one or two podcasts (across the entire range of available channels) which dealt with how to proceed with treatment of opioid
addiction. Which kind of spins off from the whole chronic pain thing, in an obvious sort of way. But there was NOTHING on the core subject.
edit on OctoberSaturday16110CDT09America/Chicago-050000 by FlyInTheOintment because: fixed title