If you have severe CP, and you read articles about coping, dealing, medicating, or whatever, you might wonder if you are in the right group. To you, Central Pain is by its nature unbearable. What are these people talking about when they discuss what medications work? Have they not read that NOTHING helps Central Pain, and your own experience certainly bears this out. What place could you possibly have here?
First of all, it is true that there is no satisfactory treatment for Central Pain. The more severe the pain, the less satisfactory the treatment. Is ANY treatment worth taking then, or should you just let the whole thing drop rather than get your hopes up where they will be dashed ONCE AGAIN. You are already crushed by the weight of the pain, and even reading the tales of others feels like a heavy weight. If you have lost your identity, you may feel there is no point in wandering around since you are not going to find yourself.
If your pain is very severe and your disabilities marked, you are in a tough spot, no matter how many people praise Neurontin, Lamictal, or whatever. Most of those reporting benefit are taking either a sedative or an antiepileptic and the response can be viewed simply as QUIETING of the central nervous system. The panic has been diminished, the PAIN is still there. This is what is meant by coping. Most patients find something that is somewhat beneficial, and at this level, a little benefit goes a long way.
Why should you bother to read, fill out the survey, or talk to people who do not seem nearly as sick as yourself. The answer is that every CP patient has a responsibility to be a witness. The public is completely ignorant of this condition. This subjects those who have it to terrible stigmatization, disbelief, and even scorn. Being a witness may not sound like much, but it is everything. If we don
August 30th, 2004 at 1:13 pm #P B
I have not had a Doctor tell me that I have CP, but from the symptoms noted, that is my problem. It started in 1992 and I haven’t found a Doctor who can offer much hope. I hurt all over and my clothes and my sheets make me feel as though ants are biting or bees are stinging. I have taken Zoloft and it did help some, but nothing has stopped the pain completely. I am now on 150 mg Effexor per day, to no avail. I want to do what ever it takes to help to solve this problem. My sister and both of my children also suffer. Thank you for your site. Blessings, Patricia
August 19th, 2005 at 5:18 am #Ira
This site is very interesting. I do not have central pain, and am very glad I do not from what I read. My own pain concerns me but I think maybe you people are somewhere else entirely. I put my face in the water. You people have dived into the pool.