comprehensive pain management programme...

[Wise Young]

This is an interesting study suggesting that a comprehensive pain management program including educational sessions, behavioural therapy, relaxation, stretching, light exercise and body awareness training improves sleep quality, mood, and other parameters.

Norrbrink Budh C, Kowalski J and Lundeberg T (2006). A comprehensive pain management programme comprising educational, cognitive and behavioural interventions for neuropathic pain following spinal cord injury. J Rehabil Med 38: 172-80. OBJECTIVE: To assess whether a comprehensive multidisciplinary pain management programme could contribute to improvement regarding sleep quality, mood, life satisfaction, health-related quality of life, sense of coherence and pain for patients with a spinal cord injury and neuropathic pain.Design: A prospective intervention study. PATIENTS: Twenty-seven patients with spinal cord injury and neuropathic pain participated in a pain management programme in parallel with 11 patients in a control group. METHODS: A comprehensive pain management programme comprising educational, cognitive, and behavioural interventions was created for patients with spinal cord injury and neuropathic pain. The pain management programme consisted of 20 sessions over a 10-week period and included educational sessions, behavioural therapy, relaxation, stretching, light exercise and body awareness training. All patients were followed-up 3, 6 and 12 months after completion of the programme. RESULTS: At the 12-month follow-up, levels of anxiety and depression in the treatment group decreased compared with baseline values, and a tendency towards better quality of sleep was seen. In comparison with the control group, patients in the treatment group improved regarding sense of coherence and depression. CONCLUSION: This study implies that a multidimensional pain management programme can be a valuable complement in the treatment of spinal cord injured patients with neuropathic pain. Spinalis SCI Unit, Karolinska University Hospital, Stockholm, Sweden. cecilianorrbrink-budh@karolinska.se http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16702084

[dejerine]

I could not agree more. Actually, I think the treatment of this sort should be ongoing. It isn't like you get the pain lined up and are taught just how to see it and how to deal with it and you are set for life. What really happens is that you get more and more suicidal but you keep going out of habit. If you resist ending your life long enough, it is a kind of knee jerk response to the pain. It would be nice to survive because someone is encouraging us, pointing out specific ways why our life makes sense when it does not appear to. The long dark nights of suffering when the burning is maddening, you are exhausted, have already pushed the medications past the safe level and cannot drop off and wonder how much tolerance is in the medication before it would be lethal, when the quiet seems interminable and your delirious mind cannot think of a way past the pain, and you just sit there, knowing you cannot bear the touch of sheets but need to catch just a little sleep. The feeling is really really hopeless and the only thing you can say to yourself is that you have been here endless times before and that eventually you will become so tired that you will fall asleep just enough and that you will feel better the next day. These are times so difficult that they never quite disappear but are additive in your overall psyche. Severe pain experiences leave a mark, and the wall of my mind could use a cleaning, to say the least. Realistic psychiatric care should give these feelings somewhere to go, not damn them up by telling us how weak we are, how much worse off others are ( I really doubt this), how OTHERS respond to medication, how more paralysis would be worse so we are lucky, in other words the stupid things people not in pain say to those who are in severe pain. I could really use some practical suggestions on how to get through a day, some reminding of some kindess I did that benefitted someone, even if I cannot be "productive" ie. earn any money.

I don't know of any group that needs psychiatric support any more than central pain sufferers. The problem is that we get lame generic responses by people who have no idea what the level of our pain is. The dysesthetic burning is just absolutely ghastly. I have it in my mouth, my sinuses, on my lips and of course down below on the body as well, especially the distal extremities where I simply cannot bear the touch of any clothing or shoes.

I am in severe pain. What more can I say. It seems obvious we aren't going to function. Instead we hang onto those five or six times when someone validated us and we say at least THAT doctor accepted what I said. I wouldn't know what to do with a group that said We are here to help you because you are in pain. I am very alone in my suffering. It seems there is no other way. People here in the same spot, at least I am not alone.

If I go to the food coalition I am smothered with love, from all the volunteers. But if I should mention my pain, they are not interested, except as a courtesy of course.

I hope the multidisciplinary approach grows to include actual mental care and help with the terrible confusion which severe pain brings. You cannot think straight and you are sick of trying to explain.

One of the more touching things about this site is the concern that seeps through these posts from Dr. Young. I appreciate him so much. He sacrifices a lot to maintain a huge site like this, and his responses do not mock us. Some doctors won't even let us have supportive spouses.

I just finiished reading the story of Semmelweiss who discovered contagious infection. All those dying women and the doctors insisted it was just some miasma that floated around. Semmelweiss had to sacrifice his reputation just to convince doctors to stop killing patients. I think some of my doctors have killed a little something inside me. I have looked at them through the eyes of pain and they have felt criticized. It is about them. When you are in pain, it should be about you.

I thank Dr. Young again, for making this site about us. He gives us the dignity of being patients, rather than pill receptacles, and in the sense of having some human dignity, that means a lot.

[rfbdorf]

Well said, Dejerine.
Another abstract placed on the forums by Dr. Young concludes that some 26% of SCI patients would benefit from psychological help. To me, that number seems to be low by about 74%. Particularly when pain is thrown into the mix.
If pain were visible, there's be much more success in dealing with it.
The multidisciplinary aproach makes a LOT of sense. In our experience what usually happens is "what is your pain level today;" "let's see how this medication works for you." The medication is damned important, but there's many other factors at work here. As it is, it seems that most patients bumble along largely on their own.
- Richard