My name is Charles “Chuck” Malinowski, and this is my story, at least part of it.
I have Reflex Sympathetic Dystrophy, also known as Chronic Regional Pain Syndrome. I developed this condition in November 2007. I have been existing with it for more than 10 1/2 nightmare years.
RSD/CRPS is an extremely painful, incurable, nearly untreatable, degenerative, and progressive neurological nightmare.
It is sometimes referred to as the most painful condition known to man.
It is also referred to as ‘the suicide disease’ because it is so extraordinarily and nearly untreatablely painful. RSD/CRPS, is, like most chronic pain conditions, for life, it will never end, it will never go away.
There is no cure. There is only mitigation and management.
I have been on over a dozen different medications all of them ineffective.
I have tried and been subjected to a laundry list of various alternative and interventional therapies: epidural steroid injections, trigger point injections, Botox injections, sub-acromial bursa injections, nerve blocks, an implanted pain pump for the intrathecal delivery of medication – two different medications were tried without significant benefit – acupuncture, massage therapy, physical therapy, chiropractic treatment, meditation, self hypnosis, ice massage, infrared heat, and the list goes on and on.
Only thing that has ever provided me any meaningful, if only temporary relief, has been oral opiate medication.
For 10 years I was on moderate to somewhat high level opiate medication which caused me very little in the way of any ill effects.
Oral opiate medication allowed me to live my life with at least a modicum of functionality and self-reliance. Even though I was still unable to work I was at least able to more or less take care of myself, and attend to my daily needs on something more than a just barely scraping by survival level.
After losing access to oral opiate medication, and even intrathecal opiate medication, thanks to an unnecessarily and overly harsh interpretation of the CDC guidelines I ended up in acute opiate withdrawal. I ended up in acute opiate withdrawal from the lack of a pain management provider to keep my pain pump filled with morphine sulfate.
I ended up in a hospital where I was supposed to be detoxed from the intrathecal morphine sulfate, and was instead pushed on to Suboxone and it’s active component buprenorphine, which I can state unequivocally has done me nothing but harm.
In less than four months buprenorphine – Suboxone – has done me far more harm than 10 years of oral opiates ever did.
Suboxone and it’s primary component buprenorphine which are being pushed at people who are now being denied oral opiates is an absolute nightmare. I can, from first-hand experience, state that buprenorphine causes a much, much more severe and rapid physical dependency than any oral opiate I was ever prescribed. It is much, much more difficult to stop taking because the withdrawal effects from even trying to minimally reduce your dosage are horrific. Furthermore, buprenorphine provides very little in the way of pain relief when compared to conventional opiates such as hydrocodone or oxycodone.
With Suboxone or buprenorphine the negatives far outweigh the positives.
I can stop taking 15 mg of hydrocodone – the opioid in medications like Vicodin – a day, after six months of daily use, cold turkey, I would feel like I had a mild case of the flu for three or four days and then I would be done. End of story.
After only five weeks of 16 mg of buprenorphine a day it will take me six or seven months to slowly wean off of it, and I will suffer horribly every step of the way. If I try and cut my dosage just a little bit too quickly the withdrawal pains are absolutely, unbelievably horrific. I am talking doused with gasoline and lit a flame, skin on fire horrific, and that’s only one of the indescribably horrible withdrawal pains. Another one of the horrible side effects is feeling like somebody has spiked my Kool-Aid with some horrible mind altering drug. Cramps, muscle spasms, night sweats, nightmares, diarrhea, etc. etc.
Losing access to oral opiates, which I safely and effectively took for 10 years before losing access to them, has totally and completely ruined my already extremely limited life.
My severely compromised life was turned in to a nightmare existence from hell after losing access to oral opiates which were the only thing that ever provided me any meaningful relief from absolutely unspeakable and excruciating pain experienced nearly 24 hours a day, seven days a week, 365 days a year.
9 out of 10 deaths from opiate overdoses occur to people who are recreationally and illegally abusing opiates, and yet it is the chronically, incurably ill, and and incurable pain patients as well as the doctors who to try to care for them who are being punished for the sins of junkies and drug addicts.
The war on opiates is not a war on drugs, it is a war on the chronically ill and those in chronic incurable pain.
The war on the chronically ill and chronic pain patients is an unspeakably cruel and barbaric practice and it needs to stop.