After 22 months of chronic pain, which has changed my entire life, I've reached the point where I've had enough. 22 minutes would have been sufficient to make me repent every past mistake, promise to change for the better, etc...
Although I have skimmed the message boards here over the past few weeks, and have found people describing experiences that are SO similar to my own, I was not sure that summarizing my situation and joining the discussions would be of much help - who really wants to hear about my problems? I never used to be someone who complained that much; I surely never cried in front of my children before these past two years. Nevertheless, here I am:
40 years old. Twenty years of experience in a decent-paying career simply lost because I can no longer drive, travel in a vehicle without suffering, nor can I sit in a chair that doesn't provide neck support without immediately beginning to experience acute pain that only increases, forget attending meetings, visiting clients, picking up my young children to put them on my lap or to swing them in the air, trying to help around the house by washing the dishes, etc...
About 11 years ago, a large metal gate weighing several hundred pounds fell on me, hitting squarely between my neck and left shoulder. I went through a "standard western medicine" path of orthopedist, neurologist, physio, neck brace, injection into the shoulder of anti-inflammatories and maybe steroids, and then after about 6 months the pain had decreased to something that became intermittent and then forgotten.
On a business trip to Torino (Turin, Italy) to present my software project design plan to a car company about 8 years ago, I woke up in the middle of the night in agony. To make a long story short, without visiting a doctor I somehow got the concierge to convince the nearby pharmacy to give me codeine without a prescription (it came in the form of huge tablets that had to be consumed like Alka Seltzer) and canceled the meeting, flew home, and after a round of ortho, physio, and a few other wastes of time, I learned to keep a kit of algolysin forte and percocet with me besides the usual tylenol for travel. Pain was something that could hit once in six months or 14 months, nothing I couldn't handle or that I thought about much.
About 3.5 years ago, the pain began to occur more frequently. It was still quite intermittent, but it caught my attention enough so that I tried some alternative therapies, including acupuncture and a chiropractor who also did other pulling and pinching things to my back and shoulders as he used to work on the East German soccer team as a physiotherapist and had a lot of training diplomas. Anyway, my life continued without any significant change, but I no longer moved heavy objects, telling people the common "hurt my back " without going into detail about shoulder or neck issues.
On April 22, 2007, I was stopped at a traffic light when a guy on his mobile phone watching the clouds drove his brand new Audi into the back of my car. He had a pad of forms to rip off and fill out, as apparently he gets into fender benders on a regular basis (this was thankfully my first accident, with 22 years of driving). As the rear of the car was smashed up, but the vehicle itself seemed to be drivable, and the other guy's car had no more damage than some moderate dents, after exchanging information he left, clearly caring not a whit. I (stupidly) figured that my neck was sore, but nothing serious seemed to have happened. I drove home after calling the police and being told that if nobody was (essentially) dead, there was no point in them coming by. About halfway home, while stuck in traffic, I called my wife, using a hands-free speaker, and asked her to get some of the strongest pain meds I knew of at the time, percocet and oxycontin, from our family doctor who knew my case history, as my neck was getting more sore by the minute. At no point did I consider going to the Hospital (again, ignorance or stupidity or simply being in shock, really a mistake).
From that day until this minute, I have woken up in pain, spent all of my conscious hours hurting to some extent, and have (eventually) gone to sleep in pain with real difficulty. I have tried most of what Western and Eastern medicine have to offer or to recommend for the pain, to no avail. Until about two months ago, when the newest medication, Fentanyl was upped from 25 to 37 ug/hour, I was never able to sleep without either taking a sleeping pill (I rotate between several) or staying up until very late (1-3 am) and taking lots of smaller pain pills.
I have gone through the whole list of orthopedists, CT scans (3), MRI's (2), X-Rays (countless), blood tests, etc... to the point where the "top" orthopedist for necks in the HMO said that only spinal fusion was the answer. The MRIs show some herniated and bulging discs, in addition to some other noise that turns out to be useless in explaining the neck pain. After private consultation with a neurologist and neurosurgeon, both of whom nixed surgery, I have mostly been dealing with the medical world for pain management.
Via my HMO, I am officially guided in pain issues by the head of the pain clinic at a good hospital, and he's tried 2 sets of epidural injections with a fluoroscope (fun! no anesthesia!!), and many various medications to arrive at the current mixture. For the first 10 months, we discovered that I cannot tolerate any anti-inflammatories, I also took, at one point, a very high dose of elatrol, had tons of algolysin forte, codeine, Percocet, Tramadex, Clonex, and other wastes of time galore – until we found Lyrica, the first effective pill at making one less focused or aware of the pain. It made a real difference until it stopped being very effective after about 9 months.
Since then, I learned that I can’t take Oxycontin 2x per day, as it makes my head explode with insane headaches, one thing that was tried. I went off of Elatrol myself (learn from my mistake, never stop taking regular medications without consulting someone in the medical world) without telling any doctors, as I hated some of the side effects, and had major stomach problems for 12 straight days as a result.
The current mixture of horrible, side-effect inducing, head-spinning, horror-inducing medications that basically make it possible for me to sort of semi-function – with the special chair, without walking for more than 10 minutes, with a light backpack, with times when I just can’t focus my eyes or mind enough to write for my new job, are:
Fentanyl patches, a 25 ug/hr and a 12/hr, every 3 days
1 Cymbalta 30 mg, in the morning
600 mg Lyrica, 300 mg 2x per day, max dosage possible, not as effective as when I was taking 225 twice a day, but for some reason I became used to it faster than the studies show is typical…
For breakthrough pain, 1-3 Percocet per day as needed
Privately, I have gotten advice from an excellent anesthesiologist who performed trigger point injections which helped the shoulder and upper back for about the past year, but did nothing for the insane neck pain. I went privately to a highly recommended neurosurgeon, who (thankfully) said that the “axial” pain that I have contra-indicated surgery of any sort, and that my spine had some small pressure on it, and probably a small bone broke when the guy drove into me, but that it probably healed within 4-5 months, and that there was nothing he could do. Through a friend I found a doctor from Shanghai who worked in a hospital there performing acupuncture on stroke patients to complement other treatments, and she performed several 2+ hour sessions with like 40-60 needles, sometimes with current, which accomplished nothing. I’ve tried reflexology for relaxation (it really does chill you out, but has zero impact on the neck pain), massage therapy (hurt so bad the next few days never went back), and the excellent Yoga called Ayangar. I go for private, pain-reduction focused Yoga regularly. It helps the symptoms some of the time, but doesn’t fix anything. My favorite pose is hanging upside-down, it really does something good for the neck. The session ends with a light massage using a special oil filled with herbs and spices.
Sadly, all of these treatments are helpful, but like placebo pills, I’m sure they make a real difference for some people 30% of the time, or whatever, but none has ever changed my reality so that the next morning I woke up without hurting badly in my neck. Lately, I have also been waking with a few numb fingers in the left hand, and renewed soreness in the left shoulder.
I have responsibility for my wife who has a Master’s degree in computer graphics but who really enjoys and is fulfilled by being the one who raises the children, who range from 13 down to 2. She is trying to help out more, starting a small catering business from home while the only one home is the baby - she is a tremendous gourmet cook.
When I come home, hours earlier than in my previous life, I do try to spend time with the little ones, both 1 on 1 and doing things with more of them on weekends, but most days I just want to collapse and be alone to read or watch something on the PC with headphones after finding a semi-comfortable position.
Sometimes the pain is really depressing. Other times it is worse. There are many topics here that I could probably contribute my two cents on, and many questions that I have and silly or ridiculous experiences in the world of medical care or home life with a chronic pain situation to share… if anyone is interested. I’m not sure whether everything will come out as ranting/complaining, or whether lots will post and chime in with “Me, Too!”
Anyway, “Hi,” to one and all. I hope that we can all find cures and ways to feel healthy once again. I seriously don’t remember what that was like - kind of seems more like a myth. I used to take two Tylenol for a headache. I remember that there was a time when I walked fast until I got sweaty and then took a cooling shower and felt just great. I remember driving the family to a cool place to hike, and then hiking for hours. Perhaps one day again soon.