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 order, etc.

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.

I understand completely. Before the government became my Dr I was on. muscle relaxers and Percocets. One immediate relief and another normal relief. I was taking 4 of the muscle relaxers a day and 2 immediate percs a day plus 4 regular percs. I could walk and even dance at least 1 - 2 dances ( pushing it) and could stand and cook ect. Now I spend most of my day in my bedroom because I can barely walk let alone stand for very long. I got a watch to track my sleep and BP. I saw that I wasn’t overreacting about only sleeping about 3 - 4 hours a night. 2 1/2 hour’s were light sleep and the rest were deep sleep. I wake at all hours with horrible pain several times a night. A long story short since I’m limited to a muscle relaxant that doesn’t help and my pain meds have been cut to 4 in 24 hour’s. The government should go back to what they are qualified to do and quit threatening Dr’s with loss of liscense or worse some of us could live again with quality of life. There is none now for me and many others. I’m tired of so- called Dr’s telling me to get a medical marijuana card - problem solved… NOT. Most people like me have insurance…that will NOT PAY FOR POT. I’m on a fixed income and I rely on my insurance to help with costs. End of rant. Thanks for listening.

I did not add my surgeries to this story. Dec 2013 putty fusion of L4/S1 and several crushed, blocked nerve foraminotomies. Pinched nerve in July 2014 led to CSF leak discovery and surgery in Aug 2014. Pinched nerve could not be found. Dec 2014 full cage fusion for possible rotation of fractured pars. Non invasive but no luck. Pain from pinched nerve remained. Then the SCS trial in Jan 2016 after exhausting all treatments, shots, blocks etc. Been a hard ride.

As for the spinal stimulator I personally know people who have tried them without success and have had to have them removed due to complications. I have been approached by 2 different doctors on this whom both recieve a kickback for every unit implanted and in my opinion, that is one of the big pushes behind it. I use a Tens Unit, a non-surgical non-invasive unit. Both only work when turned on. When I refused the first doctor he was so furious he sent me to a psychiatrist. That was fun and I was his star pupil in group class. He said he didn’t know why I had been sent. I said because Iupset my doctor by refusing to have a stimulator surgically implanted into my body unnecessary when my Tens Unit was working just fine. We had a good laugh. The second time, a surgical doctor wanted me to get one, so I went to the class on the stimulator to keep peace with the doctor. I told him I’d get back to him on my answer but never did and nothing else was ever said about it. From what I found out too many things can go wrong with these implanted devices and from what I’ve personally know from those who tried it. But ultimately it is a personal decision. Just do your homework and talk to people who have had them implanted .

I’ve been a Chronic Pain Warrior now for 18 years, been through Many PCP’S, SPECIALIST & on my 3rd Pain Clinic now. Have had back surgery but after years of fighting Insurance company, I am inoperable when it comes to my Cervical Spine. Now that I have a new insurance company I was told I can no longer receive my long-standing treatment for my cervical spine, according to my Pain Clinic. WELL, being a pain Warrior I’ve had to learn to become, I immediately picked up the phone, called the insurance company (3rd time), explained the Clinic again claiming no cervical treatment until March, ( last treatment was beginning of November), and I can not wait on treatment until then, seeing that my regular scheduled service in December was canceled because of an infection. I have these treatments to improve my Quality of Life and Function. (I had gotten the J-Codes for my treatment from Clinic and insurance confirmed that I Can get my treatment Without Restrictions. ) Insurance Agent agreed with me and gave me what I needed to explain to the Pain Clinic so they could understand they were Mistaken and needed to treat me ASAP. SO,I call the pain clinic’s Authorization Department and explained everything. By the time our conversation ended, I had an appointment made for my treatment In 10 days , 4 days before a normal Authorization goes through and I will Finally be receiving relief! It’s sad that Clinics, Doctors, Specialists, Hospitals, etc.., do not take the necessary steps to help the suffering out with the existing system that they are quite aware of and trained to deal with. We as fellow pain warriors are becoming more savvy, we have no other alternative. We are encased in failing bodies and have to find ways around to get the treatment we are in dire need of. The more we find out and share is one more way to get what we have to have to live a better life.

James, may I ask what your diagnosis was prior to the SCS trial? I have to wonder if you are suffering from Arachnoiditis, which is only one of multiple, complex conditions I have. The injury you suffered from the SCS certainly could have caused Arachnoiditis if your weren’t already afflicted. Every person who is responsible for your suffering should be held accountable. Thank you for sharing your experience.

Everything that you have gone through is so sad. I think a pain pump sounds like a good idea. I was thinking about a SCS now I am scared and will back down on that idea. I pray that God allows someway to help alleviate the serious pain that you are living with.

As my husband served 20 yrs in the US Navy retiring as a Senior Chief, now that both of us are over 70 we find our Government run healthcare keeps decreasing, medicines we were stable on get removed from the formulary, test from damage of the new drugs are run 3 yrs apart. Some are for Precancerous issues. Each year sees more reduction in those prescriptions and test. Things Seniors need daily like dental, vision and hearing are only available to the spouse who Served if it is Service connected. And higher Co-pays which corresponds with higher Medicare cost that exceed our SS COLA raises and his Navy Pension raise. We are not allowed to add additional insurance to cover those areas and the cost of the plans don’t come near to cost of the benefits of the plans. Yes they do keep close monitoring of his damaged vision. I as a spouse get less care.

This started for my family in 2012, Obama signed his Opioid Bill. Our Dog was dying from cancer and had been on a Narcotic prior. The Doctor at the Animal Clinic, took her off the Narcotic, claiming the Government wouldn’t allow her to prescribe Narcotics and pushed Gabapentin, instead. For CANCER! Thanks Barack!!!

“My Story”, said it all. I feel the pain in the man’s tone and he is exactly correct. The greedy ppl at the top don’t care and they created this mess. Karma can be quite nasty and I hope the doctors & all involved will get their days of pain without the correct medication. Drs. take better care of their fancy cars than the patients.

Doctors tell us to take NSAIDS now, looked at an Ibuprofen lately, reads: reduces the affect of aspirin… for those taking aspirin a day to prevent heart attack and strokes as our BP rises with pain. Cardiologists tell us NSAIDS increase BP, damages liver, stomach and esphogas. Must take more then prescribed to get ANY relief. Nerve blocks ….have caused much damage to many and the list goes on….. GENOCIDE is what we MUST convey to the world if we want change. Insanity is repeating the same thing and expecting a different outcome and that is what the pain community has been doing for at least 4 years now….writing and calling the very people killing us.

The pain clinic has been on me for years to get a trial implant for the spinal cord stimulator. I say the same thing every time- I have bad feet now, but who knows what would happen if they stuck that box and those wires in me. Pain doctor says, “I know you’re a smart guy, and don’t want this, but I think it will help.” Yeah, and I’m smart enough to decipher that comment. The truth came out - because cases like this are more common than anyone knows. This story is absolutely revolting. My doc said “what’s it gonna take” to get that put in, and I said, “you’re not even a surgeon, you’ve stuck a couple of needles in me, one in my back, that hurt so bad it went beyond any of this pain I have, which is excruciating.” The whole thing is a death cult through the New World Order. We have death warrants, and they won’t stop until they kill us.

I cried for you because I so understand. Dealing with back and neck surgeries myself. With rebuilt ankle. In pain continuously. I will pray for you, like I pray for myself and others in our horrible situations. It is beyond me that people can hurt others like the FDA, CDC, and DEA are doing to us. They are supposed to help. But all they have done is make those that have legitimate health problems worse. Thank you very much American government. I have so much hardware and cadaver bones in my body that the pain never, ever stops. My meds were cut also, so it’s become a trial every day. I pray a lot. And my husband has advanced stages of heart failure, so they are getting things going to put him on a transplant list. I have to be able to take care of him. My life is very hard. And the financial part is getting worse. I can’t work anymore like I used to. If my meds were right, I could. But… Anyway, I digressed. What I wanted to say is I heard of a man that was done like you have, and sued the clinic that cut him, and won. He got his meds back, and is planning on taking on the government for pain and suffering, among other things. I hope he wins. Maybe if more people did that, the persecution of CPP’S would stop. I don’t know. But I think more people are planning it. I will continue to pray that it gets better for you, and all of us. God Bless.

I did a lot of reading on these spine stimulators, 50% failure rate was to much a risk, especially as Adhesion can form around the probe causing increased pain. Considering how many more surgeries to change the battery are needed.

As we go into Election season Medicare For All will be brought up based on the Canadian model. Also buying our meds cheaper there. I object to both on the basis it’s a FAIRY TALE WE ARE BEING SOLD. Canada buys their medications from China, the same generics we buy already, just over charged for and those contracts were made under Obamacare pricing, the same that the BP meds, Zantac and Ranitidine (Claritin) were FDA recalled for causing Cancer. Then we have Medicare, Tricare Life, Medicaid, VA Care which are ALL PRENOGIATED GOVERNMENT CONTROLLED PRICES. Along with prices set by our ins. companies. Some one needs to look into Andrew Kolodny & PROP needing a $425 room + food when PAID TO TESTIFY or should I say LIE. Heard about the New Super Meth that is Narcan resistant?

You really need to do a similar story on Shannon MacLeod of Glace Bay, Nova Scotia, Canada to get his side of Canada Care, and spinal stimulator Illegally placed in his spine. 1 damaged disc, led to Adhesive Arachnoiditis, NO spinal stimulators are to be used on these patients. His Nightmare Journey through Canada Care. He is a rare man who has made it past stage 2 where most commit Suicide, he is on the verge of Stage 4. He will have no pain meds over the next 2 days or more. He is losing control of body functions. He has survived this long because of his 16 yr old daughter. His financial assistance keeps getting cut along with pain meds, he is 50 and may not live to see 51 and may die HOMELESS.

Glace Bay man with incurable condition can’t find a doctor https://www.capebretonpost.com/news/local/glace-bay-man-with-incurable-condition-cant-find-a-doctor-174052/

i’m with you i live in negaunee and had an appt with dr hoenke in marquette june 18 , he didn’t even examine me or look at my medical history , he cut off all meds cold turkey and just left the room , they are paid to hurt people and don’t care about you at all especially if you aren’t from here they only treat people who are born and raised here , uphs is the only hospital for miles and have a monopoly here they can do whatever they want

Dear James, you have such a chilling story and one that so many of us perfectly understand and empathize. I second what Lee and Michael Kastner posted. If possible, try Kratom and the Curable Health App. After may years of opioids and no longer working for me and actually feeling like they are making me sicker… I’m currently using both in desperate search of better self care since the medical community has failed me also. Kratom (I use the powder… Expert Botanical Co., Maeng Da Green during the day for pain relief and energy every few hours 2xday, and Red Bali at night for pain relief and sleep… 1 tsp. mixed with 1/2 cup of milk/chocolate milk to cut the taste) and what a difference in my pain level and activity!! It’s natural and remarkable. I’m also using the Curable App to learn more about our mind/body connection which makes soooo much sense once we’ve been living in pain for many many years. It’s a lot of work but I have nothing to lose in trying it. I wish you the best. Please keep reaching out to us for help and suggestions. We are in this together. Keep strong Warrior!!

I’m so sorry for what you’re going through. I’m reminded of the early years post first car crash. I self terminated but didn’t stay dead. Many times after that I wished I hadn’t screwed up and returned after 10-13min. These are like the bad OL days of decades ago for people in big pain. I too worked hard to regain what function possible both cognitive and physical. At times I question the efforts. I have people who care and a cat. I’d like to be more a part of this life and that’s not possible past certain conditions. I can still find my desire for life quite slim at times due to the current environment. I’m trying to cut my meds more as when my Dr’s gone, most likely so am I. These are difficult times. My respect for a person such as you is endless.

one of my gf has chronic pain with the pain meds she was able to work until age 65. 2 yrs after retirement fake opiate crisis-hit 2016 P.M cut her meds down. Next yr again. She tripped over her cell ph cord & hit sharp corner of seating bench & fractured her spine. P.M took away her anxiety meds & lower pain meds again. She had a stroke which caused P.M lower pain meds again. She was treated hostel by hospital staff & then lost P.M bc of 2 strokes. Neuro put her back on pain meds but at a very low mg. Now she no longer lives in her home & did live in a assistant Living for PT. they have even cut her pain meds out but gave 5mg Xanax. She has had 3 more Strokes putting her in the nursing home. She is now nonverbal, total invalid. I kn she wishes for death. She wants to thank the doctors that over-prescribed to other people, for the gov involvement in killing her slowly. No physician has feelings or emotional attachment 2 his patient , that’s how we’re taught he said it’s just a business. I was told this by a physician.

Hi James, After being hit by an IED in Afghanistan in 2012 I was in more pain that I could endure. Wheelchair bound and dependent on opioids the Army had discharged me. I moved from TX to WA and met my now pain DR. Who suggested the pain pump. I have had it now for 6 years. It truly changed my life. I am no longer in a wheelchair and use the pump for extra boosts when I know I have extra activities like shopping etc… I use 15mg of oxy for breakthrough pain. In my pump is dilaudid and baclofen. I encourage you to explore this.

Reading this article and the comments it appears that many of us, myself included, have had horrible diagnosis’s added since the discontinuation or marked reduction in pain management/pain meds.

If this is about SAVING money, that the government and insurance companies are just trying to save money by dropping us and no longer paying for those who pass on, they failed. When I step back and think about it, that doesn’t add up. Of course there are some (2 many) who have died and many more who are no longer bothering to obtain any medical care, so that is saving a small amount. The overwhelming majority of us now spend thousands a year on additional copays for new specialists and higher priced medicines.

I know for myself, alone, the insurance/Medicare yearly cost of all appointments and pharmaceuticals was approximately $3500-$5000 a year, with me paying 10-20%. NOW, I have a GI specialist from damage from adding untold amounts of NSAIDs to attempt to make up the deficit after forced taper plus very expensive stomach meds, a cardiologist w/ 2 BP/HR meds that cost insurance a fortune, a neurologist to be told I have neuropathy plus trying a different new expensive med every few months, and it just keeps going.

My husband and I sat down and figured out what it cost us & insurance in the last 20 months since my force taper began, but we removed the costs associated with my Dec&Jan surgeries as this is something that MIGHT have happened either way. My insurance was billed $29,000 & paid around $20,000. We have put out just over $5000 on this part alone, without counting the endless OTC/internet meds that are new attempts to find ways to manage pain naturally or just survive on the lower doses of prescribed pain meds.

I am not alone, this is seemingly the most common outcome of force tapered and abandonments. Many who do have medicines still are now on new abuse deterrent formulations that can cost 10x what their cheap off patent meds did before!

Is extremely heart-wrenching. I’ve had to see my own nephew who is a total invalent who has cerebral palsy is in a wheelchair and his body has gotten so twisted but he has lost his voice and has to use a feeding tube now. A neurologist gave him Depakote as a child for the seizures, now as an adult he suffers with chronic UTIs and kidney stones, even in the hospital he is having kidney stones to big to pass & needed gallbladder removed immediately before he could have the stone surgery. After surgery the doctor left and did not leave any pain medication for him to go home with in the hospital refused call surgeon back in to write the pain script. To get pain medication she had to see a psychiatrist because she takes care of him to make sure that she was capable of giving him pain medication and decided since he could not speak for himself they were not sure how much pain he was actually in. What BS. But willing to cut ligaments to release his contracture throughout his body. That’s just a money maker for them an again probably wouldn’t give him any pain medication after surgery.

I also wish to express gratitude to you for speaking of the hell you are going through, progressively. Since pain patients and doctors became the targets of choice for increasing mortality and morbidity rates in the social group we cal ‘Americans’. At a bioethics conference at the Kennedy Institute for Ethics, discourse addressed the question, ‘who shall we target to depopulate the United States?’ We have SO many unwanted people. Who shall we sentence to death? Thousands of toddlers diagnosed with brain death after near-drowning suck up billions of dollars in resources. Why? Because their parents cannot bear to pull the plug on the life support technologies. But truly, no one has the stomach to pull the plug on the tortured existence of children with brain death. Here is a link for specific data: https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589942939 section=Incidence_and_Prevalence We do not have enough to take care of everyone’s needs. Reports from conference attendees from Canada, Germany, Australia, etc. with socialized medicine reported that the wait lists for services everyone is now entitled to, result in years long delays in getting the services needed. Fewer people, we must have fewer people. With the construction of the current pain treatment policies we see increased mortality and morbidity in two adult populations that far and away consume most of the resources for treatment services in the US: aging white females and people of low SES. Since the criminalization of pain, the leading behavioral causes of death shifted. It used to be: 1. Tobacco products 2. Inactivity (including obesity) and 3. Alcohol misuse. Since the targeting of pain patients, inactivity took the lead. And there is a bonus: by looking steadfastly at prescriptions, the DEA can find the doomed, hasten them along. BUT street drug addiction rates soar as the DEA ignores them. They overdose, get shot, these people die simply by averting our gaze. Isn’t it great!?

Thank you for your story, I to live with Chronic Pain. But I am thankful for a 3-7 in pain. You have strength and I wish you the best. Ernie.

James I am a t10 paraplegic. My I jury came from a arterial Venus malformation in my spinal cord. Basically a stroke that left me as a complete paraplegic. With awfull pain,spasticity,PTSD. Honestly the works. I can’t say that I have all your issues but I can say a intrathecal pump has changed my life. You are no longer having to take some of the oral meds that your on, and the pump is adjustable with combining medications. I understand your pain and am sorry for your deep suffering. Look into the pump

A story so very sad. Most intractable, high impact pain patients share horror stories and none of us can believe its actually happening to any in the US. My heart was breaking reading the cascading effects cutting opioid pain medications has had on so many.

To Stephen, its not the doctors so much as it is the DEA. They have physicians who prescribe opioids running scared, that’s the major problem. I don’t blame them. They have their livelihood, their career on the line, their whole life. I have to believe most of them are truly compassionate, they have been forced into turning a blind eye and deaf ear to our cries. And America’s insanity is spreading to other countries. That’s the craziest part of this insanity.

James, I read your story and want to share something. Rather than go into my medical history which is bad, i rather tell you what to suggest for pain. Please try Mitragyna speciosa aka kratom capsules. They’re legal in Michigan. They are very very good with pain. Red Bali works best. 6 caps equivalent to 2 oxy. Please don’t end your life. Please try it. Several websites have them. I use krazykratom. 1000kg bag. They Look like vitamins with about 850 in a bag for about $175 after coupon code and using check account digital online discount. I’m not being endorsed by them but do recommend them but there are others. Since i started using Mitragyna speciosa capsules my pain has been cut down dramatically. Before I was about to end my life so I know where you are coming from. Know this James, our world has become a world of us going back to natural medicines and remedies due to the govt harming itself and others. I pity the future but can deal with it using what i use. James you’re in my prayer and others who read this. If you live in a state that Mitragyna speciosa is illegal get a PO box in a state that it is. If you live in the states that it is legal there is no reason for you not to try it. It’s a coffee plant ground up. That’s it. All natural but very very very effective for pain!!!

Hi, James, thank you for sharing your story. As others have said, it puts my “unbearable” pain into perspective. Our pain is made that much more unbearable by this fictitious “opioid crisis.” I am filled with anxiety each time I see my neurologist. There are regrets in my story, also. I have Trigeminal Neuralgia. After trying meds that made me so groggy, I would sit at my desk & continue typing. Spellcheck had fun with that. So I had a microvascular decompression surgery. No change in pain level, but vertigo and falling ruled my life. I had to take a disability retirement at age 52. God bless you, James. Your tenacity is inspiring. I think most who suffer severe pain have examined suicide.

Every pain doc who cuts off an obvious cpp should be arrested for assault. They knowingly inflicted pain on another human. Their weapons; a pen, and a lack of conscience and empathy. They have violated the Hippocratic oath, Do No Harm.

Wait wait wait. WE have almost all agreed pharmaceutical manufacturing DID NOTHING but meet demand and that the stinking DEA knew where every drop of base and where every pill went. The PROPER INCREASE in prescribing caused by a mindless UNDER-TREATMENT of severe pain merely PARALLELED the FLOOD of many different kinds of ILLICITLY manufactured ‘drugs’.

The rationales used by some with pain or ‘got hooked’ or ‘addicted’ that pharmaceutical manufacturing bears some burden for “opioid crisis” have no weight. My claim is of course that the money for the rape of pharmaceutical manufacturing collectable by the DOJ/AG has caused this renewed tragedy of under-prescribing.

If there can be some profit to blaming pharmaceutical manufacturing, well I guess I am all for it, even something slanderous as I too have a constant battle with pain. I must stay so still now untreated with pain medicine for 2+ years that I have acquired heart failure and Diabetes.

So sorry for your situation, your story has me crying mine is not quite to your degree but with my pain I can relate and fear the future. I pray there will be a turn around in policy before it is to late for so many patients.

James you’re have my prayers.

These heartless people causing this torture will sooner than later receive judgment. People in horrible pain should not have to go to those places for pain management I am so tired of how we are being treated. Lord Jesus come soon.

I read that the CDC has backtracked and changed their recommendations on pain management as to NOT abruptly stop or severely taper current pain patients, has anyone else read this?

Also, has the government forgotten about the alcohol prohibition and what happened back in the early century? Hello! Black Markets went NUTs! Then the law got changed back. Prohibition just BRINGS on more crime and desperation!

This is just SO wrong! Long-term medication-compliant pain patients have been thrown to the wolves. We have been misclassified as “addicts” although we do NOT take medication recreationally or to get high. With very rare exception, recreational drug users are a different population entirely.

In today’s Brave New World, pain patients are almost all closely monitored. They are restricted as to the quantity and strength of Rx they are allowed. Stolen, misplaced or accidentally destroyed medication will not be replaced. (I have stopped using my HMO’s mail order service and now pick up in person after a couple of late arrivals in the past.) They are urine tested, compelled to sign punitive “pain contracts”, questioned and constantly “warned”. Even so, they may be suspected of diversion, although that makes no sense since they need the limited medication they are permitted to have. They often are treated with condescension, at best, and as criminals at worst. Recreational drug users obtaining drugs illegally are not subject to these barriers (unless/until they get caught).

Like Mr. Lucas, whose situation seems more dire than mine, many pain patients have seen their ability to function and quality of life seriously compromised, if not completely destroyed. Older adults like me (soon to be 83) may be robbed of their ability to live independently and forced into dependency. Many will end up existing at government expense in Medicaid-financed facilities of dubious quality-simply because an arrogant bunch of robust 30- and 40-somethings have decided that pain medication is no longer “safe”!

Perhaps-just perhaps-someone should ask us!

I Wish all of us could go to Washington DC to unite and speak together. After I would love to tell the CDC let’s keep going and cut All alcohol to everyone in the US after all it is very addicting and distractive for millions of people even those such as you CDC that may say you only have a drink or glass of wine occasionally.

Are u in Texas I wonder? I know it’s bad here. My 21 yr old died in extreme pain & my husband also. My family got in lyme disease infected ticks & TX docs are illiterate of Lyme so we were misdiagnosed too many yrs causing our organs to fail. The pain is horrific from just the lyme pain but now the other battles wth our organs has us on death row so to speak. My 43 yr old daughter has already had 2 heart attacks etc. God bless u as we can relate. I too became wheelchair bound etc. I and my husband worked for govt but oh how my life is changed n this pain invites me to be Heaven bound. bbpittsbennett@gmail.com

Mr. Lucas I can’t properly express the ANGER I feel for what this ridiculous “opioid crisis” has done to your life. It is complete [edit]. I wish so much that someone who could help you would have the balls to do so. You should be getting absolutely all of the meds and proper medical guidance that you need. The pain meds you need were made for patients in your situation. I really hope and pray that you get a doctor with a soul and a heart that can SEE through the BS that’s been forced upon you and your family!!!

Have you tried CBD oil, not crap from Mom and Pop stores. See projectcbd.org for the best information I have found. It will help many other problems too. And a Pain Psychologist? Try the App CURABLE. I never would have thought those things would help so much. You have too many chemicals in your system. I am sorry you are going through a much but I have to believe that we all do so for a greater reason than EVIL or plain SUFFERING Are you in any FB Groups to ge suggestions from others that also suffer ? Are you pleased with your Primary Physician?, A lot to think about Be well

James, my heart goes out to you and all of us dealing with chronic pain, and the management of it. I don’t know where I would be without opioids because when I wasn’t on pain meds my mind went to a bad place. I would and I’m sure all of you out there would give a lot to not need them.I have trigeminal neuralgia and facial pain -all right sided, and have had it for 20 years. Besides dealing with the pain we have to have the problems dealing with pharmacies,judging docs etc. I could write a book about the crap I’ve had to endure with from bad people in the medical community. Good thing I have found an excellent Dr., but because he is good he is constantly being harassed by the state and feds . But he has never done anything to warrant their abuse. . I have seen this over and over. I also understand the other side as I lost my 28 year old smart , kind and beautiful son last year from an accidental Overdose of heroin that had fentanyl in it. We are devastated and our lives will not be the same. But there needs to be a separation between the two issues . Quick punishing pain patients we already deal with enough.

First of all my heart goes out to James. We all have our stories and the depth of despair is the common thread. Government mucking up our healthcare system is a cautionary tale to give it any more control. It’s terrifying what it’s doing to us CPP but is just a taste of what my friends across the pond say socialized medicine is like. Everyone will be treated as badly as we are treated now. We need to fight back before hat is a reality for us and the ones we love who may have any chronic condition.

This sroty tings true throughout the US of A. So many legitimate chronic pain patients, lives ruined because of governmental and agency tactics, from people who have no idea what chronic pain is, but feel they can mandate changes. Federal egncies using scare tactics on Pharmacists and doctors alike, many true chronic pain patients gone now, due to severe lack of hope… Epidemic due to Pharma’s greed. Not due to people with broken bodies. I wont go into my broken parts other than to say, that i gave up on the medical society long ago… 98% dont care and the 2% that do are as stated, “scared to help” their patients because they have all heard the stories and feel it best to not accept a patient with problems that require a narcotic to treat. I am happy to say, i have been able to get surgery and press my situation to be off the Methadone i was forced to get through a Maintenance program, having to label myself an addict to obtain. It is perplexing to me, all of it! Typically the pain will never be gone, but trying to live a productive life and pushing throiugh similar issues I am almost free of opiates and hope through the grace of God that i am able to move forward free of medication, legally or not. I decided it is better for my situation to deal with the pain and anxiety, then to deal with all of the repercussions. I am sad to read the prior Gentlemans story, I have faith and I know that suicide (many have taken that route) is not an option. It makes me a bit angry as well as sad to see the greatest country in the world, label someone as drug seeking or other behaviour without looking at the situation, but they do. I worked very hard to get surgery and seek the best Dr. to perform it and with better results than prior. But as stated never will be free of pain. The years of Tylenol and Ibuprofen leaving my stomach and renal system in a battered state, i can only hope this will be behind me for 2020. I will pray for us all, to be free from it, w/productive life…

Medtronic Corporation, based in Minnesota near the funding center of pain-denial hate groups like PROP, is the principal manufacturer of both the Spinal Cord Stimulator Implant and the Intrathecal Pain Pump Implant.

They launched both highly-expensive implant devices on the premise that some patients can not safely take opiates nor opioids by mouth nor by injection, and these costly and extreme surgical measures are nexessary to save lives.

Were someone to sue Medtronic for what they did to Mr Lucas and many other victims, it would be interesting to discover what percentage of the spinal cord stimulator implants were predicted to fail, forcing a second operation to implant the intrathecal morphine pump. If I were licensed to practice law and were suing Medtronic on behalf of Mr Lucas, I would subpoena Medtronic executives during pretrial discovery and attempt to learn that. When did they know that the Stimulator implants would catastrophically fail and force a second operation to implant the Intrathecal Pump? How much profit did they get from causing two surgeries instead of one? And how much money did they spend to promote those CDC Opioid Guidelines that force many patients who have insurance, to undergo these surgeries to get relief?

I’m so sorry to hear your story - it breaks my heart. Have you ever looked into regenerative medicine using stem cells? It is something I’ve just started looking into for my mom who has no use of one leg due to debilitating neuropathic pain.

Best wishes to you - I hope you find a compassionate professional soon.

Its astounding what is happening to people in pain in this country. Its shameful, horrendous and a horrible assault on basic human rights. There are so few doctors that care anymore, that is why I started a group on Facebook to help people find decent doctors, bad doctor good doctor however there are not alot to chose from. We ALL need to join the ‘Dont punish pain” rally if we are physically able (which many of us are no longer due to being cut off proper pain control medications) The sad reality is, pain medications ARE NOT the cause of overdose’s in this country, it’s heroin and fentanyl laced street drugs. Why should legitimate chronic pain patients be the ones to pay the price for drug abuser’s choices?? When will this complete injustice/abusive behavior towards pain patients stop???

I am so sorry for the quality of life you are forced to live. You story inspired me not to be so whiny. I do have an incurable illness as well but do get some relief from time to time. Your situation is much more extreme than mine. I’m sorry no one will really hear you and HELP YOU. We must all keep speaking out and staying strong together and hopefully get some relief and new laws passed soon. God bless, keep fighting and stay strong! I will pray for you daily. Best wishes and thanks for sharing

I also have gone to this confusion with the pharmacie/and pharmacist! With all the changes to the new laws that have happened, the pharmacist take to policing the medication. It is Not their job to do this! That is why I am seeing a pain specialist. And the newest change is from a 28-day fill policy, to a 30-day minimum fill policy? Everybody is so afraid of the new government regulations. Doctors do not want to lose their license to practice, pharmacies do not want to have a bad mark on their records. and anybody who is not in pain does not understand the world we have to live in. It scares me that this new year is going to bring many more difficult changes to the chronic pain sufferers lives! And this really frightens me!

Yes, It makes you long for the days of 2014 when we got real hydrocodone in the mail every 3 months and saw a doctor once a year. That neurologist went out of the opiod business and warded everyone a year in advance. Now I can just barely hang on but I dont think anyone believes it or cares. My son was helpful he said mj 24 7 is possuble he did it for 2 years. Well, since I cannot make it at 126 mme I guess that is all that is left.

My heart breaks for you! Sadly your story and mine share very similar traits. I have my DNR orders in place, I want to just die and get this life over. I have had Epilepsy all of my life as well as Psoriasis with Psoriatic arthritis aka the double whammy. I am on three blood pressure medications take twenty three different meds and one injection monthlyand one emergency injection medication for Addisons disease. I have to take prescription medications daily so I don’t start throwing up that causes an Addison’s crash and seizures. The left side of my brain (temporal lobe) has been damaged from the seizures caused by out of control pain and addisons crashes which always causes seizures. I fell three stories twenty four years ago at work only problem with this was I owned a small business and I couldn’t sue myself and insurance didn’t cover owners back then which made zero since and still doesn’t but that was the laws back then. Anyway I could go on and on but it won’t change anything lastly I now have Idiopathic pulmonary fibrosis and now fight for every breath I take but at least now I see an end to the pain and suffering I just don’t know when that will be it could be a year from now five years from now or tomorrow but I refuse to let this pain and disease take my love for God and I hope every here doesn’t either. None of us understand why we suffer so greatly but in the end God will reward us for all we have been through with love Jeff. P.S. I had back surgery because an orthopedic surgeon told me I wouldn’t ever need pain meda again, I couldn’t sign the papers fast enough and go into surgery what a lie he destroyed my life absolutely destroyed it the surgery caused fifty employees to lose their jobs and me to go broke and in misery never let anyone touch your back unless it’s truly life or death and you choose life there is hell in survival wish I didn’t everyday of my life.

Mr. Lucas, what a horrendous way to have to live, and how incredibly brave you are. I truly have no words. My heart breaks for you and your family. I live in Atlanta, and we have a great hospital called the Shepherd Spinal Center. You may have already been there but in case you haven’t, their reputation is very good. Offering thoughts and prayers feels woefully inadequate, but it is all I have to give. May someone who reads your story step in and provide real help.

Horrible . I am so sorry! My daughter has incredible pain that prevents her from being able to live alone. No quality. No chance to have a spouse or child. Oh yes the neurogenic bladder alone is a mess when in extreme pain.. my DT has that. Did you check into the PE1 or Bionic880. I am reading about light therapy to interrupt pain signals. IVIG Privigen can help heal nerves to a small degree I have read. Infrared heat via a portable sauna . If you dont have a therasage infrared heating pad long before now your docs surely haven’t been helpful or knowledgeable… it may help the spasms some no guarantees obviously just a suggestion . Did you also check if you have dysautonomia and or mast cell. Both can cause additional pain. God bless you may you find relief and sending prayers your way.

James - just when I begin to feel sorry for myself I read a story such as your’s, though your’s seems so unusually difficult. Thank you for writing your story. If chronic pain patients don’t speak out then the normals will not understand. They never will truly understand, unless they ultimately find themselves at some point in our situation. Hang tough, Brother.