I belong to a loosely knit group of men who share with each other online at a website. Our common basis is that we are usually Christians and all suffer with a chronic illness. Today, I received notification of a new post about a person who had recently been diagnosed with CRPS. He wanted to know what it is and how it would be treated. His head was still spinning from what his doctor told him and wanted an answer. I tried to answer him while attempting to avoid my all too often self-pity party and to explain what it is and has been for me. I have found out through experience that this is one of those “silent” diseases that not many know about or have heard about. I hope my answer to the question enlightens not only him, but I would like for you to get a peek into what CRPS is. Oh by the way, CRPS is the new moniker for RSD – Reflex Sympathetic Dystrophy and by name is Complex Regional Pain Syndrome.
I hate to hear of another with that diagnosis because for me it has been a 25 year battle. After a nerve in my upper arm being severed, it just went bonkers. The side the nerve provided “nerve action” for would burn and feel like I was the recipient of a wire brush treatment even though I am not too rusty. They diagnosed mine as RSD – Reflex Sympathetic Dystrophy. Although most sensations and motor functions are gone from the region served by the severed nerve, RSD/CRPS affects that part of the nervous system that operates without active control or sensation so it automatically does the little, routine stuff like open pores, control the size of blood vessels and such. As you may understand, nerves operate with an electrical charge racing back and forth through them to handle whatever that nerve is supposed to handle. My doctor said it was like a phone line. Now imagine a nerve gone wild with something like 60 cycle interference or your car radio just buzzing from a loose sparkplug wire and you have close to what RRSD/CRPS is. In my words, it is a nerve gone wild. And it involves the Sympathetic Nerve System which is the automatic control one I just described.
Funny thing about mine is that the real problem is not in the arm although it is where the intense pain resides. The problem is a bundle of nerves called a ganglion which is located inside the chest wall up about shoulder high but close to the spine. So removal of the ganglion would not only be extremely dangerous, it would not work because another would take its place. So, surgical treatment is usually out of the option and studies on those tried are not convincing that is the way to go. I personally opted out of this treat later in my therapy although one pain specialist offered it to me.
Next, I was started with stellate ganglion blocks which injected a local anesthetic to the problem ganglion. The injection is made in the lower front side of your neck with the pain doctor having to move your carotid artery and jugular vein out of the path of the needle by placing a finger on them and gently pulling then out of the way. He then inserts a special needle through the skin to a depth where it touches one of those little wings that stick out from the side of a vertebra, rolling the needle so it will be injecting out of its tip toward the chest. The procedure, though having a certain amount of high risk, is actually easy for the patient. I have had many done and the relief was great. The idea behind it is like resetting an electronic device – shut it down and it should come back on working correctly. This treatment often cures the problem when done in a series. However, it came to the point for me that they only began to work for the duration of the local anesthetic.
My next treatment was use of a TENS. Electrodes similar to what are used to monitor the heart are placed in the appropriate areas close to the affected nerve and a Transcutaneous Electrical Nerve Stimulator is attached. They have various settings that are tried within a parameter of what is known to work. For me, this worked great until I developed an intolerance to the electrodes (we tried so many) and could not longer use it. Luckily, my anesthesiologist at that time sent me to a pain treatment program out of Texas Tech University that was very cutting edge at the time. (It is amazing at what can come out of Lubbock!) They implanted an electrode along the nerve in my arm and hooked it to a unit similar to the ones used for pacemakers. That worked for me extremely well for several years, but for me it was not the cure. The pain slowly slipped out of control and drove me crazy!
For those who continue to have problems, on a rare occasion an electrode will be inserted into the spinal column (yes, next to the spinal cord) to try to help soothe the affected region with a gentle electrical stimulation that would compare vaguely to giving it a massage. It is a permanent implant, also. I have not had this treatment because I am a V.A. patient and they operate within limited funding. Also, various doctors use various means of treatment and that is not popular in another geographic area.
There are several other treatments from acupuncture and hypnotism to holistic medical approaches that are available if you seek those out. I have been told that hypnotism or acupuncture both should work for me. My doctors have not opted to try these for their reasons and I trust them. They would, I believe, pursue any course I asked them to try.
Currently, I am disabled due to the intense pain and the accompanying mental problems that included being suicidal and hospitalized about four times. Thank the Lord that each time I recognized something was wrong and hustled myself to an emergency room. I was treated as fast as if I was having a heart attack! The last time around, God and I worked it out so that suicide is not a problem. Although sometimes I feel I would be better off dead, I do not want to be dead anymore. I am not afraid of death and as any devout Christian, I welcome the day when I join God in his presence. That is in God’s hands, however, and not mine. I draw Social Security disability (I wonder why it is called Security…but that is another day’s blog) and am unable to hold a job due to the intensity and unpredictability of the pain. Some days I will hardly notice it. However, barometric changes drive it wild so I know if a front is coming through. The pain is controlled with some meds prescribed by a psychologist and my personal doctor – some are for treatment of nerve associated problems, and one is a narcotic that I only use when forced to do so, and I also require antidepressants of a couple verities. My regimen includes 800 mg of ibuprofen twice daily and that medication really helps. These groups of pills keep the pain and me under control – and I cling fiercely to the hand of God. In spite of all of this, some days the pain becomes so great – even medicated – that I become very irritable. My wife compares me to a one-eyed water moccasin in skin shedding season. If it moves, I strike at it. (And she is the sweetest, loyalest lil’ ol’ country gal you could ever meet!)
I hope this does not scare you, but go into your treatment with a positive attitude. Trust God and believe it will work. After all, every single bit of healing on earth, whether it is something miraculous or a scratch healing, comes through the work of Jesus Christ. Without him, this world and our own persons could not exist. One of my college professors referred to Jesus Christ as the cosmic glue that holds it all together. Yes, I truly believe this – especially after working in surgery for over 30 years. Too many times I have seen prayer answered right there during a surgery. Trust the Lord and take him at his Word. My mother, a nurse, often shared in the Sunday school classes she taught, a scripture quote from the mouth of Jesus: “With God, all things are possible.”
Let me add an additional word about narcotics. I have used many from the vicodin variety to a patch on my skin with very strong artificial morphine to a final stages (yes, of dying due to a horrid disease) type of a narcotic drug called methadone. I hate narcotics. Not only am I scared of them because of their addictiveness, we all develop a tolerance to them which will come to a point of the narcotic being useless. Not only that, I hate the hangover affect! What I have done is to take the narcotics only on extremely rough days and not to take them regularly. And trust me; doctors can spot those who go from doctor trying to get more pain medications. At this point the patient has become addicted and is not willing to go through what it takes to break the addiction. Do not become one of those. I once worked with a doctor who would just send you back to your main doctor without a prescription and his office visit bill to pay! Just don’t go that route.
My goal for this has been to help others understand some about one of the “silent diseases.” If you know, you can probably do something about it. If you have a friend with it, be a real neighbor to that person. Some cannot get out and about very much. Others you will never know they have a problem. Really, how long does our society tolerate “I hurt” before it is ignored? I know I have been guilty of that. Sometimes my pain is so great I cannot see your pain. So give these who suffer this often disabling disease a lot of patience and back up your love with work. Just don’t be like the fellow who went out into the cold skipping a jacket while asking God to keep him warm…
May the Lord bless you and I pray that you have a wonderful day!