Editor’s Note. Mr. Lucas is a Michigan man who left the following in our commentary section. It
deserves publication for a wider audience.
I have read so many stories about people in chronic pain, I thought to share mine. I am a MI chronic
pain patient from a spine injury years ago from a spinal cord stimulator trial to treat a pinched nerve.
The temporary wire lead placement went thru the CFS liner near the T8, blood filled the spine, and
pooled around the L3 area, probably where I had a putty fusion 3 yrs. prior. Underwent emergency
decompressive surgery and partially paralyzed ever since. Transferred to Rehab Institute of MI, learning how to live life in a wheelchair, I started getting some movement in my right foot (toes only). 6 months of grueling work later to learn how to walk again, I came home in a wheelchair and had the whole house equipped with handicap amenities. The neuropathic pain was unbearable, but I was given strong pain meds to get me thru the days and much harder nights. Nighttime can be pure torture for sufferers of badly damaged nerves. In another life, I was an engineer with a good company; good pay, many hobbies, classic cars, motorcycles, outgoing & sociable. I scarcely remember that life.
The hard-physical therapy work didn’t pay off as hoped and I stopped progressing after a year or so and
became stuck in a half paraplegic like ailment. All body functions are similar to a paraplegic, total loss of penile & most bowel feelings (I mercifully spared you the disgusting details), one used to be good leg, one 20% functional with a mostly paralyzed left ankle and foot, but I became able to walk again. Albeit very slowly with a cane, but I could walk! You would think this is a good thing. It is not. Nerves in my lower body constantly set off fireworks that my brain thinks certain areas are in acute chronic pain. Walking, standing, sitting, almost anything I do creates chronic pain. Nights can get so bad you would have to experience this to fully understand. It’s tough day and night even with the help of a loving wife and wonderful son. Combined with a 60% pay cut from a partial pension & disability pay, burning thru a 401k, life is rarely enjoyable anymore but became so much worse recently.
With true pain management and a cane, I could function enough for things like dining out, local
festivals, movies, doing small tasks, etc. Not much, but I could do things even all the neuropathic pain in my lower body. I also went to a therapy gym 3 times a week. Nevertheless, I was still in bad shape and only one weekend away from home since the injury 4 years ago. I also must miss our annual trips to visit other countries. I’m fortunate to have a caring wife and helpful teenage son, but this has been very traumatic for them as well.
Then the opioid crisis came. The government had to clean their own opioid mess created by the big
pharma companies and most states follow the lowest CDC guidelines (no opiates). Many chronic pain
patients became caught in the middle and lost all quality of life, some changed to illegal drugs and some decide life was not worth living. Just google some articles and you can see for yourself how bad things are. The summer of the pain med cuts, I would truly ride a bike around my neighborhood. Getting on & off was challenging but it was such a wonderful feeling. Unfortunately, this only happened about a
dozen times that summer. But what happened prior to Thanksgiving 2019 is much worse. Most nights I
wish I never regained any feeling and stepped out of that wheelchair.
In 2016-2017 I was wearing a fentanyl patch (75 mcg), oxycodone for breakthrough pain, benzos for
tremors/anxiety and sleep. My life is a constant battle with pain that is noticeably killing me since
symptoms are so much worse now from a bout of edema from a BP medication reaction. My neurologist
was so fearful of the government, his practice, meds he courteously prescribed; quickly cut me down to
25 mcg, then 2 months later a 30-day supply, and a certified letter explaining I was no longer a patient. He did ask for 3 months to change to a pain clinic, but my replies never got conveyed correctly to him. NO Pain clinic would take me because I was wearing a fentanyl patch, and all explained I had to get weaned off by the prescriber (certainly not an option). Aware of the peril I would face, I learned how to purchase my own fentanyl patches & benzos on the dark web, $200 a month and things were the same for a while. During the first seizure in July 2018, I tested positive for fentanyl and a benzo, labeled a “substance abuse user” with “drug seeking behavior”. Translation: Many in the medical field don’t care about you, and it’s easy to know whom since their apathy is so evident. Using the current permissible prescribed “pain management” meds, I am mayhem of pain, disturbing tremors, spasms, lack of sleep etc. After my 2nd seizure and no drugs but cannabis was in my system, they decided to run tests. The seizures were caused by chronic high blood pressure and had a negative effect on my brain.
Sleep is a disrupted 60-90-minute interludes of waking up to pain/burning legs, blood pressure is always over 190/120, and highest was 215/145 days prior to Xmas eave when I fell asleep during the late
afternoon. This cycle of hypertension crisis-urgent used to ease up around 9AM, and then so exhausted
from what I went thru the last 8-10 hours I slept on/off until 1PM with less pain. Now it’s 24 hrs. a day and I try not to sleep. I keep a nighttime logbook with wake-up times/pains and even with the strong pain meds I used back then, I read back and it’s like now, but I did not monitor BP back then. I doubt if any pain med is strong enough to block this sleeping pain, it’s dominant, and taking extra clonidine prior to sleep has no changes. I use some strong BP meds, .3 mg clonidine patch, and .2 clonidine tabs as needed, a few each day/night. I even asked to have my left leg amputated below the knee and they quickly said no because I would still have phantom pain (surprisingly this is not an uncommon request).
On a side note: I truly felt the beginning of a seizure several weeks ago (I’ve had 2, but no memory of
them), my brain exploded in a lightning bolt feeling that lasted nano seconds. Afterwards I could create a humming like sound/feeling in my head if I held the pressure right it would increase to the point, I thought another shock feeling was coming and I would change the pressure and shut it off. I sometimes get this humming back at peak spikes but can’t make it stronger (maybe posterior fluid from very high BP?). Heartrending maybe, but an amazing consciousness.
Mid November after an initial ketamine infusion, an edema outbreak from a BP med reaction quickly
swelled the feet and lower legs over a weekend (open sores, bleeding skin breaks, mass confusion, etc.). Stopped the BP med after talking with my PCP and the swelling went away. The added pain did not
change and spread to my other leg (never thought this pain could get worse, but CRPS2 does that). The
constant pain makes it hard to get around and I am afraid to fall asleep and have another seizure and
end up with epilepticus – continuous state of seizure. Lately walking has become quite problematic and
usually I stay in the house. This pain can get unbearable and could kill me from high BP since symptoms
are so much worse now since that bout of edema. I use some strong BP meds, .3 mg patch, and .2 mg as
needed, which is almost every time I wake up from pain. I completed all end of life documents, DNR
I have exhausted all general neurology options from 2 local hospitals and pain clinics. Sad, since they
were couple minutes’ drive from home and respected facilities. Months since I went out with my family
to visit friends & relatives Stayed home for Thanksgiving and Xmas, but it doesn’t bother me because I would probably have to leave early and spoil their fun. People don’t understand when you are slouched in a chair, can’t block the pain to join in the fun and they think you just turned into an unlikable person, because the pain is not visible except for facial expressions. I’m always exhausted and in pain, podcasts and movies help block it out, but spasms always start because of tolerance to the muscle relaxants I have been taking for many years. I am currently seeking neurologists (getting referrals and reaching out) who use more aggressive techniques and in the forefront of severely damaged spinal nerves. I hope I find something; I don’t think I will make it to the summer if nothing changes. However, one referral explains she can help with an intrathecal pump with catheter placed above the injury level. I’ve tried everything else, so I don’t get my hopes up. I’m so wasted away the last couple years I do wonder if I could survive being put under again (it will be my 4th time).
Diagnosis added in 2019 – Aneurysm, Seizure disorder, Acute Encephalopathy, PRES/hypertensive
encephalopathy (changed to acute brain disorder), Metabolic disease, acute anxiety, High blood
pressure disorder, Tremors, Neurogenic bladder disorder, Hypertensive emergency, Disorder of central
nervous system, Complex Regional Pain syndrome-Type 2 of left lower extremity.
This is what our country’s is doing to chronic pain sufferers. Some selections that sufferers choose now:
Getting your own pain meds (unmanaged self-pain control eventually grows out of control), live in a
nursing home for pain control (been there, hate it), suicide (to dreadful, but a natural death is welcomed by many).
I wish I never got out of that wheelchair.