Finding Relief from Neuropathic Pain: A Long and Difficult Journey
John Craven

The meaning of this paper is simple: if you have chronic pain and haven’t found a way to manage it yet, don’t despair.  Treating pain can be very difficult. There’s no way to measure it, or to measure progress in treating it. Some meds have a very slow response. Some meds may only work for you in combination. It may be very difficult to accept that your treatment may have many more failures than successes.

I’ll use my case as an example partly because it’s the only one I can speak about with authority and partly because I’ve tried so many treatments.  I started with a traumatic spinal cord injury. One vertebra was crushed (burst fracture), and its neighbor was broken.  My cord was crushed and I suffered a great deal of bruising.  Pain due to the cord damage gradually increased to that of a red-hot stabbing sensation, as though I was being pierced by a sword.

I went to several pain clinics and tried a number of oral medications which either did nothing for the pain or had nasty side effects. We tried direct injections into my spinal fluid. Finally, we implanted an infusion pump which metered morphine into my spinal fluid. The pain stopped completely! I could sit. I felt great and excited.  That lasted 3 days. The full pain returned, so we increased the pump flow. That worked for another 3 days. Eventually, I was using a very high dose of morphine which was affecting my mind and still had to increase the dosage every 3 days.

That’s when TM hit. I was paralyzed and numb below my chest. The pain was gone, but so was everything else! The doctors had no idea what happened until my new neurologist came in and knew immediately it was TM.  They removed the pump and catheter that led into my spine. They were afraid the hardware was causing a problem.  Since then I have concluded that my spinal cord reacts badly to morphine. The morphine had initiated TM as an attack of latent MS.

Over the next 6 months, I regained about 50% use of muscles and sensation. At the same time, the TM pain developed. My legs and feet have enough pain to keep me in a wheelchair.  For the next 6 years, we tried almost everything that is offered to treat neuropathic pain; acupuncture, vitamins, over-the-counter meds, prescription meds, meditation, spinal cord stimulator….  When something helped, I kept it, so I have accumulated a package that helps a great deal.  I’ve had so many disappointments that I’ve learned not to get my hopes up.  Too much hope can be very painful emotionally.

Over the years I’ve developed the following recipe that helps me: carbamazepine (Tegretol), mexiletine, nortriptyline, clonazepam (Klonopin), and clonodine in my (3rd) pump along with all the meds for bowels, spasms, depression, etc. This is my combination and may not work for anyone else.  It’s good enough for me to drive to the YMCA and swim for a half hour non-stop. Wow that feels good!

Relief, even partial, can change your life.  It will add more activities to your “can do” list.  I now get out in the world a little.  I’m not as isolated as I was.

The flip side: As I was writing this, I was called away by an alarm for a periodic maintenance interval for my body.  I found that I had missed my morning meds which include carbamazepine, mexiletine, and clonazepam.  Now I understand why the stinging pain level was so high.

Some notes on the search: I am my own greatest resource. I make things happen. I think about my history more than anyone. I am the only measure of my pain. I am the only one who knows the different flavors of pain and what they mean. When my 2nd pump was removed, both my doctor and her nurse (my wife) told me that a 3rd pump was impossible.  I had to get approval myself, uphill. This is the reality of the process. You have to be involved deeply in every decision and action.  You will also have confusion. For example, I tried a clonodine injection several years ago at the Mayo Clinic. It failed to reduce pain. We recently added the same drug to my pump, and it has made a great improvement!  Trying something again makes sense at times. 

It may take a long time. Just to try a particular drug may require that you taper up to the full dosage over a month or more, and then the tapering off slowly, if it didn’t work.  The time delays can be awful.

Summary: There are a large number of treatments and meds that can help with your pain. Finding the right combination requires determination and patience.  There is no guarantee of success if you try, but there is a guarantee of failure if you don’t.  Find a good doctor, and remember that you are not alone in your search.

Editor’s note: Chronic neuropathic pain is one of the most difficult symptoms of the neuroimmunologic disorders.  The relationship between chronic pain and depression is insidious; the interaction and the increased intensity of these symptoms can drain the positive spirit from the most gregarious and wonderful people.  When I talk to people who are suffering with neuropathic pain, who have become increasingly frustrated with repeated failed attempts to find effective treatments and who are communicating defeat and despair, I often times refer them to John.  After reading this article, you likely understand why I do so.  At his core, John is such a positive person.  He has been through hell and back, but he remains dedicated to finding a way to continue to love his life and to live it to the fullest.  And he has taken responsibility for finding the answers for himself using a rational and systematic approach which emphasizes a partnership with his physicians. 

Over the years, John has compiled a comprehensive list of medications and treatments for managing neuropathic pain.  His wife, Mary, is a nurse at a pain clinic in Idaho, and has worked diligently with John to create this valuable tool.  It might be helpful for you to review the medications on this list for the purpose of discussing options with the physicians who are treating your pain.  It is important that you review this list in the context of the information we have available on the web site about neuropathic pain and treatment options.  You will find numerous articles about pain treatment in the newsletter and journal archives, and excellent presentations about neuropathic pain management under the symposia and workshop link on our web site.  Please feel free to contact John via email to request an electronic copy of his pain treatment list:  jscraven@msn.com