I have read (lurked) at this site for quite a few years and decided to finally join, and post, and share.
I have gone through the postings that were helpful, that were supportive, that were above and beyond what those that do not share a chronic pain condition would understand. This site has provided me with tools, and more about how to speak to others about my condition, and how to speak to myself, develop my mantra, of how the reality of things are. I hope that it has done this for others.
I have recommended that many people (friends and family) seek out support but have not posted one single comment about myself anywhere. What made me change my mind? Today I read the "How did you get here" thread and really wanted to share. There were many things that I had in common and many things unique to my situation, but the element that is most important is that pain as I experience it, and how we all do, and how we get through each day, and look forward to the next, is greatly enhanced by reading and sharing our stories.
So how did I get here?
I was born with a kyphosis (inverted curve compared to normal neck). The effect of kyphosis is that it puts extra pressure on your cervical vertebrae, and I am not very lucky when it comes to accidental neck impacts. I also work in a field where I spend much of my time standing with my arms extended and head bent downward, which puts even more pressure on the discs. Lots of bulging discs and nerve impingements throughout my whole life, and one very bad MVA (I was driving a small Honda Del Sol, at 55 mph, at twilight on a two lane road, when a disoriented person made a U-turn 20 feet in front of me, as if I was not there, I left about a 10 foot skid path before t-boning the much larger vehicle at about 50 mph, literally bouncing off the larger car and ending up quite a bit away, with the dash in my lap. The force of the impact and the action of the air bag, lifted me upwards and my head took the roof off the car - granted it was a targa top, but still, it was a significant impact - my knees went into the dash, and my face and arms were bloody, yet I got out of the car, walked away, and went to check on the other driver, who was disoriented, and shaken up, luckily we both walked away, but that accident caused my existing neck issues to get much worse much quicker.) Years later, I ended up going to an orthopedic surgeon because my shoulders and arms hurt. I never thought it was related to my neck, I always believed it was a "pinched nerve" in my shoulder, and would often wake unable to move my head from left to right without pain shooting down my arm, which I thought was normal for shoulder problems. Shoulder doctor looked at my x-ray and said I needed to see a neck doctor right away. At this point, I had let it go so far that the degree of stenosis and spinal instability was dangerous.... to the point that one more slip and fall, or MVA and I would be paralyzed, or so I was told. Got two opinions, first was to stabilize one area by doing a c6-c7 fusion with instrumentation, the second opinion was more in depth. I recall the doctor looking at my MRI and x-ray and asking when I had my diving accident. He said he had seen a few other cases like it, and they were all from people taking shallow dives into lakes or pools and having direct impact to the top of the head. He suggested much more aggressive surgery with anterior and posterior approaches and rods, plates and screws for stabilization. I went with the more conservative approach... which unfortunately I was too late for it to be effective at removing pain, there was too much pressure put on my nerves for too long, and even after surgery, I was left with some stenosis and permanent nerve damage. After that it was an adventure as I tried to get treatment for my pain, and resume a normal life. Most places were shot clinics only, but eventually I found a real pain clinic that treated the whole thing - body, mind and soul. I was put on long acting and short acting meds, had fewer shots, and regular physical therapy. This doctor saved me and my relationships with others. I am not sure if names are allowed but I credit Doctor xxx for saving my marriage, my work, and in essence my life. He was the first to make me feel like my pain was real, the first not to even consider I could be a drug seeker, and the first to talk to me about how my pain affected not only me, but my relationships with others. Prior to that, I had doctors that would give me ibuprophen or other NSAIDS, or Tylenol 3, or at most one month of Lortab. Short acting meds are not the way to go, the body adjusts to them way to quickly and they make you chase the pain. Long acting when it works, keeps it down enough to get out of bed, get going, then you can fall back on your break through to get through work, and be comfortable enough for trying to sleep. Which besides chronic pain I also have idiopathic insomnia and moderate sleep apnea, so I am always fighting for a good night's rest.
My condition provides constant pain. I have
radiculopathy, paresthesia, numbness, limited mobility in my neck and arms, myelopathy, and some side effects from medications. These are my symptoms, they are chronic, and I am always working on ways to improve my situation. I work with my doctor to try any new medications that are compatible; including but not limited to, Cymbalta, Neurontin, Lyrica, Amitriptyline, Nortriptyline, trileptal, NSAIDS of every kind, anything to use in conjunction with my standard opioid therapy of Duragesic and Oxycodone IR.
None of these other medications had a significant effect worthy of the side effects. Although Lyrica worked very well for a month or so, before it stopped being effective. The rest just provided more side effects than relief.
I have had the good fortune of finding a great doctor who keeps up with my treatment, tries different therapies directed at nerve pain while maintaining what worked, makes sure my neurological symptoms do not deteriorate, and shows genuine interest in my well being.
We live with pain, dependently and independently. It makes us do some things, but it doesn't control us 100%... we can suppress it to a degree, we can learn coping mechanisms for the worst of it, and we can live like it doesn't exist, but it does, and when it is bad, there is nothing you can do but take control of the TENS device, med up, meditate, ice, heat, whatever, you can do, to manage the situation, and hopefully the time you spend in the control of pain is less than the time you have with controlled pain.
Through all the MRI's, and neurological exams, they have also found a tumor on my spine. An angioma a couple of levels below my fusion site that is pressing on nerves, but is otherwise benign. At some point, it will have to be dealt with as well.
I guess after all of this, what I wanted to do was say, Hi to all of those in the spinal and chronic pain areas that I have read for a number of years, share a little bit of my story and hopefully contribute at some point to the ongoing support and sharing that makes this forum so important.
I am cmonkee, I work, I play, I have family and friends. Pain is something that is part of my story, but it is not my only story. I have experienced a lot of things, researched lots of things, and through my work as a scientist have begun to understand the biology of pain. I also have been fortunate enough to have gone through psychological therapy as well as physical therapy for my pain, and the lessons learned there are just as important as the physical. Pain is physical with a large emotional component, and learning more about both is paramount to our continued success living in pain.
My parting contribution is about pain scales...
One thing I have learned is that not everyone understands or feels pain the same way, and there is no way to compare my pain to yours. When my doctor asks me to give him a 1 - 10, I tend to think about it as 10 is pain that is so severe you can not think, you can not move, nausea, passing out, are all imminent. 9 and 8 are severe and agonizing and still immobilizing, but just barely better than 10, still unable to think, or speak, it is disabling. A 6 or 7 is where it just starts to affect thinking and speaking, but you may still be able to move and interact to a small degree. 5 and 4 being the mid ground is still severe, but you can think, you can move, it may be stilted and difficult, but you can begin to get things done, agonizingly, but still. 3 and 2, are moderate, irritating and you are conscious of it, however, you can eventually put that amount of pain out of your mind. 1 is the lowest amount, it is a bump, a bruise, a simple pain response to a simple injury. I live with what I consider a 5 - 6, I can work at this level, although I am constantly aware of my pain, but sometimes can dip down to a 5 and put it in the back of my mind, it doesn't affect my ability to think, or to move to a large degree. When things get bad, the occasional flare ups, I creep up into 7 and 8. If I move wrong, or if for some unknown reasons, get the worst of it, I get a 8 almost nine, but only a handful of times would I say I have experienced a ten, and at those times, I could not think of anything but the pain, and how I wanted it to stop, and by that I don't mean consciously wanting, because It was so overwhelming all I knew was pain, it was every breath, every thought, everything that I was, it was all pain. That is a ten, and I wish it on no person. The reason I bring this up is that I have friends who are doctors of all kinds, oncologists to general practice, and we have talked about how relative the pain scale is, and how you get cancer patients coming in with what you know is horrific levels of pain, calling it a five, and other patients coming in to their family doctor with an ankle sprain calling it a ten. If you have ever seen the pain ruler, with the 1 - 10 and the sad faces on it, you get that there is no way to quantify pain, only its existence and reduction or elimination. We all have been asked the question and I am sure there are plenty that disagree with my own ruler, but it is what I use to monitor my progress and my treatment... when things get to the point I cant work or think, I either need more breakthrough, or time to take a break and rest. I try not to escalate my dosages, and have been on a steady state of two to three years between upping my LA meds and IR meds. Again it is relative, and my pain has made me more open to the pain of others. If someone says they are in pain, I do not discount it, I will not diminish it, I will not one up them, I will empathize and help if possible. I have a relative that has ongoing pain issues, and I have encouraged them more and more to seek out a more comprehensive pain management. Unfortunately they are dealing only with a GP and short acting meds alone, and this leads to a continual cycle of chasing pain and higher dosages. I can not make someone seek out different treatment, I can not tell them they are on a path that often leads to bad places, but I can share my journey, and how I have been helped by doctors that care, and by programs that treat not only with pills but with all types of support.
Anyway, I love to write long emails, and I hope that I have not bored anyone too terribly. I look forward to contributing, and taking part in the forum.
Thanks for reading, and thanks even more for being a part of this community. We all got here in different ways, and can all make unique contributions based on the diversity of our journeys.
Peace and calm,
and hoping for more good days than bad for all of us,
Spinal tumor, Kyphotic spine, cervical to thoracic disc degeneration exacerbated by MVA's and other misfortunes
“Knowledge, like air, is vital to life. Like air, no one should be denied it.”