July 08 & May 09 =>PAiN =>PAiN & =>PAiN (new info 01/01/10)
I have it, lots of it, all my waking hours my body is in pain in varying degrees, according to the Pain medication I use, the sleep that I get or don't get, and whether or not the other part of my life is being occupied with strong enough distractions that occupy my mind enough so that my thoughts temporally ignore the pain signals; all of this is not enough.
The Pain dictates my actions, my plans, my everyday activities, my social life (that at this time is almost empty). The Pain makes my daily plans for me, controls how I think, & what I am capable of physically accomplishing.
But enough for now, as the Pain is jabbing me hard on my left Sciatica, both of my buttocks & the underside of my left leg are burning as I imagine hell would burn. This is the first of the writing that I intend to do regarding Pain & Spinal Cord Injury. This pain began while I was still in the hospital after the fall that caused my SCI; it increased over the years, and the past 15 - 18 years have been pretty bad and the past 6 have been even worse. And, I am 25 years older...
Four years ago I began seeing my 2nd pain doctor, he was good, he helped me with several pain related issues, got the Carpel Tunnel Syndrome that was almost at the in-operate-able stage on both hands fixed via surgery by an excellent hand doctor. He actually told me that in the area of pain management, if a pain doctor could get rid of 60% of a patients pain it was considered a success!
Do you have SCI and do you experience pain?
If so please communicate with me, maybe we can gather up enough information between us folks with SCI to find methods that work for us as individuals that can be shared. We need relief.
Before the below list appeared in my life, I tried Acupuncture, massage, chiropractic work with several good chiropractors, dream therapy, color therapy, Cranial Sacral Work, and, of course, contemplated voluntary removing myself from the living.
Here is a list of what I have been using for the past 4 plus years for pain relief.
Fentanyl Transdermal Patches (Narcotic) - 50 mcg/hr - 24/7 - these save me...
Double strength Percodan 10/325 - 4 ea. a day (I'm down to 2 ea a day as they do not work on neurological pain)
Neurotin - Varying doses (300 to 900 mgs daily) to establish an adequate strength. NOTE: I have discontinued the use of Neurotin; it works for some and not others; see UPDATE below.
Ibuprofen - One dose of 4 ea. daily - NOTE: January 2010, I have stopped using Ibuprofen.
Tylenol 2 ea. a day - NOTE: January 2010 Now that I'm using the Lyrica I have stopped using Tylenol.
I also use Diazapam 5 or 10 mg several times a week as a muscle relaxer and it does help.
This is NOT enough! The pain remains, but at a lesser degree; the listed drugs take away (mask?) about 70% of the total pain but, I feel the effects of all this medication...
UPDATE: January 2010 - I have been taking Lyrica 75mg twice a day and I can report that maybe 50% of the burning stinging is gone; I'll be upping the dose soon. I am looking into the DREZ procedure at the moment; there is a 50/50 chance that I'll have it preformed this summer. Look up DREZ on the Internet and come to your own conclusions.
Contact me, Gary L-1 Para - email@example.com
I'm not much on adding a lot of links to pain resource sites but occasionally I find one that has valuable information such as this first link listed. Using the descriptive words below I can describe my own pain as: Burning dysesthesia, Burning, Shooting or Lancination, Allodynia...Central Pain: What It Feels Like:
If you think you have central pain, it may be helpful to know that seven types have been identified. Here are some descriptions gathered from people with each type. Any or all of these pain types can overlap. From --KM at http://www.msouza.net/pain.htm
Burning dysesthesia: A mixture of pain sensations in which persistent light touch is perceived as a thermal sensation. It can be approximated by injecting capsaicin under the skin. There are four overlapping subtypes.
Burning: "A chemical, not a purely physical burn"; "A mentholated burning"; "Like the skin of my legs has been destroyed and the charred flesh turned up at the edges"; "Like all kinds of tissue damage all at once, with burning worst"; "As if my body belongs to something else which is burning it up with fire and acid"; "I exist to burn."
Cold: "Like touching dry ice"; "My hand tells me the skin of my legs is cold, but it feels like burning"; "Sometimes I know the burning is the draft of the car air conditioner, but other times I forget that my skin must be cold when it burns."Metallic: "Like tinfoil under my skin"; "Like I am touching an incredibly cold pipe in a freezing night, so that it drains the flesh and burns me"; "Like a dentist is touching the nerve in my tooth, only very cold"; "Like chewing tinfoil."Wet: "When I am sweaty, my skin is really sensitized and I feel wet and uncomfortable underneath the burning."Motor or Kinesthetic Dysesthesia: A feeling of cramping and contraction associated with burning. "A terrible fatigue in my muscles, even though I can't move them"; "A feeling of drawing, pulling, crushing."Hyperpathia: Heightened response to a noxious stimulus. "If I get exposed to a sudden cold draft, or cold rain hits my skin, it just knocks me over and I recoil at the cold pain"; "I usually feel very little in my feet, but if someone sticks me with a pin, it feels terribly, terribly sharp."Allodynia: Pain from a very mild stimulus. Can also describe referred pain. Can relate to touch, location, temperature or muscle loading.Touch: "Light touch from clothing becomes unbearable after a few minutes, like an awful sunburn"; "Paper laid on my legs begins to burn unbearably after a minute or so."Location: "If the room is hot and I rub my palm against the whiskers on my face, I feel burning on the outside of my forearm"; "If I sit long enough for the skin of my bottom to burn, I also feel burning out to the side on my legs and behind."Thermal: "If I pick up a warm drink, it feels hot in my hand"; "Warm ambient temperature sensitizes my skin so that all the other pain features appear more easily."Muscle loading: "Movement makes me unbearably sore, so I avoid it"; "The day after I try to exercise, I have awful feelings of lactic acid buildup"; "It feels like I have been sleeping on rocks."Shooting or Lancinating: Sharp stabbing pains with an electrical quality. "Like electricity shooting along a nerve"; "Like being stabbed."Circulatory: A very common type in which circulation feels compromised. "I have the feeling of pins and needles in my limbs if I place them on something."Peristaltic: Feeling of fullness, cramping, nausea or distention. "My bladder burns suddenly"; "My gut feels like it is going to explode."