Central Pain Syndrome
 

seeking more information about Central Pain Syndrome.
anyone else been diagnosed with this after traumatic injury.

I've read the general info at several medical sites, and more details at websites for CPS.
would like to know more, esp. from others who experience this type of pain & manifestations. what treatments have helped?

You probably have seen these already, but I thought I'd post them since I hadn't read about CPS before and maybe others might want to read.

NINDS Central Pain Syndrome Information Page
http://www.ninds.nih.gov/disorders/c...ntral_pain.htm

Central Pain Syndrome clinical trials link-
http://clinicaltrials.gov/search/ter...ain%20Syndrome

Dear Jo;
I am very sorry for your recent dx. I too have recently been dx'd w/ this condition but the exact cause hasn't been determined yet. I pray your case isn't as severe as mine, as I suffer almost all the symptoms system wide. I suspect mine was caused by several surgeries, procedures & meds involved w/ my spine or neurotoxicity. Of course several other causes could be the reason & I have an appt at the Mayo Clinic in January. I have suffered from RSD in both legs since 2001 but this pain has engulfed that pain that has disabled me since that time. My narcotic pain meds do nothing to relieve the dysthetic burning or other pains. Good luck to you.
Gramps

Hi Gramps,

I have the burning of CP too. Evoked burning dysesthesia from a cord injury. In addition to being roasted in acid every few days I get the great sensations of laser beams / lightning bolts / crushing of vertebrae / knife stabs / muscle tearing / electric shocks...not to mention the incredible cramping, etc.

Been dealing with it since Jan 1978. Living day to day. Have taken the meds for ever, not much relief.

Just received another denial for disability, this time due to lack of medical evidence of all things. Not giving up the fight.

Don't give up man. Some websites below:
http://www.painonline.com
http://www.centralpain.org
http://www.painmed.org
http://www.theacpa.org
http://www.paincare.org
http://www.painfoundation.org
http://www.aapainmanage.org
http://www.neuropathy.org
http://www.ampainsoc.org
http://www.yinyanghouse.com
http://www.painreliefnetwork.org

Peace & Health,
Kevin

I also get those as well as the paresthesia, numbness, spasms, etc. Thanks for the sites but I was familiar w/ most of them already. I got relief from the dysesthesia from several antibitoics, at least for the first 5 days or so. Docs told me I was crazy. I said I would have to be crazy to be begging you for antibiotics when you're offering me opiates if they didn't work. I finally found proof by two Yale professors that found antibiotics, especially minocycline relieved central pain in rats. I'm sorry you were denied disability because it's impossible to work under these conditions. I wish I could get back to the level 6-7 pain of my RSD. I don't know how severe your symptoms are but I can barely do more than sit or lay down & I'm usually not comfortable in either position. My heart goes out to you for surviving this disease for so long. I suffered w/ RSD in both legs since 2001 but when this hit, it was a whole new game. It humbled me very quickly. Take care & good luck w/ your fight. Gramps

I was just diagnosed with this too. Actually, about 3 months ago. But I suspect mine is also from spinal disorders (fusions). My Neurologist originally diagnosed me about 3 years ago with small fiber PN which she said almost didn't show up. Sooo...because of the ongoing burning, etc., etc., etc. and a hypersensitive CNS she said she was changing it to Central Pain Syndrome. And Gramps I think you are right. I take Vicodin for other kinds of pain; I call it mechanical pain. But for the neuropathic pain I do wonder sometimes if some of this isn't hyperalgesia. And forget meds like Neurontin and Lyrica...I can't tolerate the SE's and Neurontin actually increased the burning. :eek: So, I take Klonopin which helps a great deal.

Dear Kathi:
It's more allydonia than hyperalgesia but you can throw them all in the mix. Your nerves are automatically firing signals to your brain & overloading it w/ info. The pathways aren't restricted to the peripheral nerves so we also have the muscle pains, cramps, spasms, etc. I think this is what you described as mechanical pain. Stress worsens some of the symptoms so that's why klonopin helps. I don't take neurontin or lyrica as neither helped w/ my RSD pain. It's a complex condition which there really isn't a treatment for since it's not fully understood yet. Take care & good luck.
Gramps

Tried the Neurontin way as well. All it did was make me gain weight 50 pounds to be exact. To control my PN in my left leg I go radical and every 6 months or so get Radio Frequency Ablations done. Basically the burn the nerve so that the signal doesn't get to the brain and I can actually feel my foot and my leg doesn't feel so heavy and painful.
Every other med I have tried has not worked.
Good luck to you.

Thanks Gramps,

When I was referring to the mechanical type of pain I meant more arthritis. The neuropathic pain is what is causing the spasms and such. :eek: You are right though...it is VERY complex. I am reading the book "Central Pain Syndrome" and it gets very involved. I think painonline.org describes it the best. Hardly any med touches this and that is what I have found. As a last resort my Neurologist actually tried Xanax first and then Klonopin. BOTH helped a great deal by quieting down the CNS.

Fibro,

I get spinal injections when it gets bad...and those help as well. I am due for an RF on the C2/C3 next month. And have had one in the lumbar which worked very well.

Finally I found someone who gets them too.....they are radical, but it seems the only thing that works!