Re: [TMIC] pain
Could your neuro be meaning that the pain is ongoing from damage to the spinal cord, and not continuing TM? Certainly TM does cause Spinal Cord Injury (SCI) which causes the sort of nerve pain that you describe. Refer your neuro to http://www.myelitis.org/abouttm.htm This is the location of Dr. Kerr's chapter on TM. In it, he states that pain is an ongoing feature in up to 40% of those with TM, and describes methods of treatment. Personally, I think that the 40% figure might be a little low..but our sample may be skewed by the fact that those without pain may not need to find their way to this group. TM causes spinal cord injury, and spinal cord injury can result in pain. Also from the website, in discussing the rehab of patients with TM, Dr. Charles Levy says, "Nerve pain from the spinal cord is sometimes called "dysasthetic pain". Because of the SCI due to TM, nerve messages traveling through the spinal cord may become scrambled and misinterpreted by the brain as pain. Besides the treatments listed above, certain antidepressants such as amitriptyline (Elavil), or anticonvulsants, such as carbamazepine, phenytoin, or gabapentin (Tegretol, Dilantin, Neurontin) may be helpful. Stress and depression should also be addressed since these conditions make pain harder to tolerate. Have you had any of these medications tried? Currently I'm being treated with trileptal instead of carbamazepine. Trileptal is related to tegretol, but is much kinder to the liver. Trileptal relieves that itching on the inside, deep sunburn-ey ache of nerve pain. The pain caused by the fan-dysasthetic pain-is that caused by the scrambled signals. I experience it in my arms and hands, and the trileptal helps significantly for me. I've also found that wearing a light, gauzy shirt will block the breeze and keep me comfortable. Personally, I'd recommend something less invasive than spinal nerve block to start, particularly if you have had no treatment of the pain. There are lots of other options, discussed on the TM web site. Good luck! Please let us know how you do! Sam [EMAIL PROTECTED] wrote: My new neuro in the pain clinic is telling me that PAIN does not continue following the first episode of TM. I was diagnosed over a year ago and I have had pain from my waist down ever since. I have burning, aching, itching, and my skin hurts so bad that the breeze from the ceiling fan even hurts. She is trying to tell me that my pain is not TM. She wants to do a nerve block in my spine, I demyelinated at T9-T10. Please help me. Do any of you still have pain for this long, or maybe longer? Teresa Bain Ferrell
Re: [TMIC] pain
Katrina, Don't give up hope!! EVER!!! Time and a positive attitude will go a long way.. I've been a tmer for 8½ yrs and today I have more feeling than beforeas long as I was numb/paralyzed to t8 I didn't have pain...the tingling came along and then the heavier pain as I improved.. I do think that a Physical Therapist is important part of improvement.at least when I had home care after leaving the hospital, the Physical Therapist was major help in regaining my walking skills.and continued physical therapy is also important part of improvement...and you can do the phsyical therapy at home after a therapist has shown you what to do. I do want to say that I appreciate the situation you're in and to let you know that we understand that life for the caretakers in our lives are very stressful!!! Please know we're thinking of you...keep us updated. Hugs, janh
Re: [TMIC] pain
Thank you so much for your encouragment. Sometimes I feel Jayme doesn't understand how hard this is on me(i have a two year old and a six year old and now a 35 year old i am doing everything for). Physically and emotionally I am so tired and worn out. I never get a break and it is so hard. I keep telling myself things will get better. Jayme is still fighting with the rehab facility to get aquatherapy. They told him today that when he comes back home(renos should be done in a week or two) that there is no more therapy. The head doctor(nobody likes this guy) told Jayme to get used to living in a wheelchair there is nothing more they can do. (it has only been five months) Dr. Kerr told Jayme that there is no reason why he shouldn't walk again with lots of aqua and standing. This was very positive for us but the policy here in SK, Canada is until you wiggle that toe there is no need for aquatherepy. (So frustrating) I have hurt my back from trying to move Jayme's legs and helping him. I am just not strong enough. I cry so much right now because i am so burnt out. I shouldn't be complaining but sometimes I just need reassurance. I think if my hubby appreciated me more it would make the job easier. Even the nurses and social worker have seen that Jayme doesn't realize that it is not just about him. Sometimes I just feel very alone. Thank you for listening to my whining.Having a bad day, Katrina - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: [EMAIL PROTECTED] Sent: Wednesday, August 04, 2004 3:48 PM Subject: Re: [TMIC] pain Katrina,Don't give up hope!! EVER!!! Time and a positive attitude will go a long way..I've been a tmer for 8½ yrs and today I have more feeling than beforeas longas I was numb/paralyzed to t8 I didn't have pain...the tingling came along andthen the heavier pain as I improved..I do think that a Physical Therapist is important part of improvement.at leastwhen I had home care after leaving the hospital, the Physical Therapist was majorhelp in regaining my walking skills.and continued physical therapy is alsoimportant part of improvement...and you can do the phsyical therapy at homeafter a therapist has shown you what to do.I do want to say that I appreciate the situation you're in and to let you know thatwe understand that life for the caretakers in our lives are very stressful!!!Please know we're thinking of you...keep us updated.Hugs, janh
[TMIC] Vacation
I will be unsubscribing for a couple of weeks as we are going to visit Neil,Wendy,Brian,Bailey and our sweet Cole. YAH Cole's Proud Gramma Carole
