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!

Fibro,

LOL! They are radical but boy do they work! :) I am like you...I can't tolerate a lot of meds at all. And believe me, the spinal bit started years ago and I have tried a LOT of meds. I have a post going on at BT about medication hypersensitivity. It is something I am ALWAYS hearing...just hypersensitive to most meds. Then...throw on top of that...Central Pain Syndrome. Sooo...that is why I was agreeing with Gramps. It just seems that there is nothing, no oral meds anyway, that really take care of this. And a LOT of people don't understand it...not even myself...not fully anyway. :) But, YES to the injections...it seems like...instant relief sometimes.

I don't think spinal injections themselves are so radical. However, some of what they're injecting now is. Botox & ketamine are 2 examples. They have been giving lidocaine injections as well as IV lidocaine for awhile. It's not easy finding doctors that do these however but it sure is easy to find ones that give epidurals. The pain pumps are based on injections & are just a continuous one really. I may be looking into injections if the cause of my CPS can't be treated at Mayo in January. I had my pain pump removed last year & don't want to go back there. I tried most meds through the pump so I would probably have to go w/ ketamine. I don't want botulism(botox) in my spine after a med made from venom caused me problems! I would prefer no one come near my spine w/ a needle again but if that's what it takes...........
Gramps

Gramps, I totally understand where you are coming from. My doc wants to do Botox for my trigger point injections but Medicare will not cover it. I get cortisone every two weeks like clockwork now just to keep the muscle pain in check. Botox would make the effects last longer but the idea of getting a substance like Botulism in my system gives me the hinkies!:eek:

Dear Wendy; Sometimes Medicare, or other insurance companies, keep us from having to make tough decisions. Botox has been used in cosmetic surgery for awhile but placing it in the spinal fluid is different. I would have to wait for some longer term results before I would consider it. Especially since I've been burned before by a promising new drug. I can't understand why so much effort is going into making drugs out of venoms & poisons. Aren't we exposed to enough toxins already?:confused:

Gramps, I saw that you have had CPS since 2001 in both legs, same as I, except it isn't in my feet. I am now totaly disabled, I live in my bed for second to second, the pain even on all the meds I am on, still hurts terribly. I was thinking about the mayo clinic, please let me know if they helped you? I am tired of what I call, give her, her bandaid or pain meds and go home, there is nothing else we can do for you. I just believe that there is something more, if I thought for one minute that I will be this way for the rest of my life.....oh well, let's not go there, but I believe someone knows of a great doctor and treatment to at least get my pain level to a 5. If anyone knows of any good clinics, doctors in WA State, please let me know?

jo55, thanks for the links and you others... WOW
 

I certainly was happy to read that one of the only constants for anyone with Central Pain Syndrome is that it is disabling. Kevin, I got denied for the same reason, but if you were disabled before your eligibility runs out, I have to assume that you are just getting turned down as part of their usual strategy to reduce the total number of people to those who will REALLY fight for themselves. That definition link that Jo posted might be useful in your appeal since it says straight out that if CPS is your problem, it is disabling.
Kathi49, good to see you - you must have seen the same recommendaton to this discussion board that I saw.
I read that the person who first identified Central Pain found that nerves in pain, send out a chemical signal that other nerves don't, and he is hoping that he will be able to tailer a pain killer that suppresses only nerves in pain - oh wouldn't that be cool, hmm?

oops, sorry to be confused - I have CS, not CPS
 

I guess what I have is Central Sensitization, where you have a source of severe somatic pain untreated long enough (usually several months to 2 years) and develop a sensitized pathway that forever pains you, even if the original physical source of the original pain is removed. Apparently your brain even recruits other nerves to strengthen the pain pathway so that you react with pain to normal (or I think even no) stimuli.
Hard to keep clear on these different terms.

Central pain sensitization
 

can occur With or as result of other conditions including CPS. some feel it occurs w/ FMS. the pain is in your head [brain]--not in connective fibers, as the name Fibro-myagia implies.

the Links shared by Kevin for CPS are great. Central Pain Syndrome Alliance, a group that educates & offers support, can provide more details & info.
can Link to them and additional Links & info on CPS @

http://centralpain.org

CPS & central pain sensitization came up as recent topic @ NT forum for Peripheral Neuropathy. If interested, go on over there to see what others have said, but for more detailed info. Support or questions, hightly recommend CPSA group.

wishing you ALL the Best

Hi I just popped in from the MS forum and saw this thread, i have been dealing with central pain sensitization since the the mid eighties. I had an accident that led to a series of operations to fuse and then re align joints in my foot. No matter what they tried, the pain just go worse until eventually i had had all the joints in my right foot fused- it left me with a really useless and extremely painful foot. By this time i could not work, i lost my house ( could not keep up the morgage) and i was close to suicide as the only solution to the pain. I did not know about Central pain sensitization back then and believe or not, a lot of the medical profession do not know about or fully understand it. I eventually had my right leg amputated as a means to deal with the pain and its around that time that i finally found out about centralized pain. needless to say the amputation did not really help, in fact i added phantom pain to my problems- thankfully tegretol helped that ( i now take lyrica which works better). I was sent to a pain clinic and thats when i found out about centralized pain. unfortunately mine had been so long standing that they said it would be very difficult to deal with. I was taking over 900mg of kapanol per day at that point and still had severe pain plus i could not function due to the high level of narcotics. Once i had been fully assessed they selected me as a candidate for an epidural portacath through which i could self inject morphine and marcaine. I had that done in 1999 and it worked reasonabley well, i was far from pain free. but i used to have 3 injections a day and thanks mainly to the marcaine i had an hour or 2 of pretty good relief after eaach shot. the down side was that the marcaine used to make me lose strenth in my remaining leg for that hour or so after each shot so transfering safely from chair to chair was a problem. After about 18 months i developed scar tissue in the epidural space so that it would no longer work and i was back to intense pain. Thankfully i was able to have a synchromed pump implanted- this delivers morpine directly to the spinal fluid and is far more effective than even epidural. when i had the pump implanted i was started on 5mg of morphine per day ( remember that i had been taking 900mg orally!) and i got really good pain rellief. That was nearly 7 yrs ago - the pump has really contolled my pain, i have odd bad days now but usually manage well,i was able to get back o work for 7 days per fortnight and basically got my life back. I am not working at the moment but that is because i have now been dx with MS. Cetralized pain is tough to deal with but given access to the right treatment it can be done, i just think it is sad that the general medical community have so little understanding about it that they under treat pain so that it can lead to sensitization in the first place- this is one time that the saying "prevention is better than cure"is so true

Wow, some questions
 

Kebsa,
I appreciate so much your taking the time to post this information. I've been dealing with nerve pain for so long. Most of you know my story. (multiple stress fractures at this time in addition to the nerve pain) The pain medication application is complicated by having Sjogren's Syndrome which causes dry mouth and dry eyes. Adding more of the medication for pain makes the eyes totally miserable. I watched American Idol thru one eye at a time last night and parts of it with both eyes closed. I was only able to take one pain pill yesterday. Recently, I had to start taking blood pressure medication which made the mouth and eyes situation just unbearable. So I cut the dosage in half.

I am incredibly sensitive to medications that dry me .

Does the medication received thru the pain pump dry you out? And what about constipation. I already have bowel issues due to neuropathy.

My pain has been unrelieved so long (almost 4 years) that I fear it may have become centralized. My life is so limited because of the pain.

Billye

Until Kebsa can get to you, the little I know...
 

is that the pain pump acts locally - that's why she could go to 5 milligrams from 900 orally. So, it shouldn't affect your dry-eye condition.
However, I have no idea if you are a candidate for a pump.

How did your eyes & mouth get so dry? Are you taking antihistamines and other anti-cholenergic medications? What have you tried to fix the dry-eye so you can take the reccommended dosage for high blood pressure?

Thanks Gizmogirl!
 

I appreciate your answering this gizmogirl!

I have Sjogren's Syndrome and Rheumatoid Arthritis. And severe osteoporosis along with neuropathy.

The Sjogren's Syndrome is an autoimmune disease that causes dry eyes and dry mouth. It affects the glands that produce the mucus in the body. It also affects the GI tract and other organs. In some cases it affects the nervous system.

I don't know if I would be a candidate for the pump either. I'm just exploring my options because the pain is so very miserable and consuming.

Thanks again,
Billye

OMG I sure hope you have the type of Sjogren's syndrome that plateaus instead of progressing. Have you tried the prescription that makes you make more tears - I think I saw it on TV recently - is it any good? I thought I had to struggle with dry eye and self pity because I can't wear contacts and it can set off headaches...I will never whine again. Our eyes are so important to keeping our spirits up. It must be so hard to have them not just not working right, but paining you as well. I think I would actually wear goggles with a damp rag if it reduced the nagging pain - what about you? I sure hope you get somewhere with a pain pump or other pain killer.
Good luck, silverlady

Progressive Sjogren's Syndrome
 

I've got the progressive form of Sjogren's. Yes, I'm taking Salagen (produces a small amount of saliva and a small amt of moisture in the eyes). I also use Restasis which is the medication that helps you produce tears. In my case I'm not sure it works but it sure has kept my infections down in my eyes. I wear goggle prescription glasses when I am out of the house where I can't control the air in my face. At home, I can control it a little better. I sleep in moisture goggles at night. Life got really complicated when I got this stuff.

I'll keep the information you posted for me in a folder. I do appreciate it!

Billye

I dug up this older thread while looking for info about Central Pain Syndrome. Currently I have secondary progressive MS (use a powerchair), fibromyalgia and after doing some research for this constant burning, stabbing, hot, cold, sharp, dull, throbbing pain, especially at the end of my tailbone and in my feet, it sure sounds like central pain syndrome.

Anyway, after all that, have any of you original posters found anything new that actually helps ease the pain? A pain clinic I went to once around this area had nothing else to offer besides the usual pills which my neuro, rhumy and pcp already tried. Twelve or so years and counting of this horrible pain........HELP PLEASE!!!!! :)

Maybe none of you original posters are around, but I have some new info. Yes, I do have Central Pain Syndrome from 32 years of MS damage to my brain, brain stem and spinal cord. My neuro prescribed the generic for Tegretol, Carbamacezine which worked great for the pain. However; in six days the side effects took over, horrible weakness, fatigue, sore throat, more achey than usual and headache. I am sensitive to meds so wasn't too surprised.

Now I need bloodwork done as it can cause aplastic anemia (all ready anemic), and have to visit my pcp for a general health check. Wonder if I could take 1/2 pill once or twice a week without se's?

Why couldn't something work right for a change???

Any news from anyone else? Take care...:)

In pain- what's new??????????
 

I'm new today and am not sure how all of this works. My history is- stroke in 2001-recovery gift...Thalamic Pain Syndrome. This all happened when I was 50, so I'm hanging in there. Finally getting to be a Grandma in June so I need to keet going. I'm lucky though, I pushed hard and finally got an internal pain pump at the Cleveland Clinic in '06 . No miracle but the hydromorphone helps some. I was able to get a Disability Retirement from my teaching job from the state union last year. Now I'm fighting Social Security for benefits.
Anyone out there have any luck with them and this diagnosis?
ML

diagnosed with this traumatic injury
 

hi iam becky, and have been diagose with CentralPain too and the only place it has not hit on myself is my abs and butt. is this nerve pain or like? and i would also like more information about this too if you do not mind. ammtriplene works with me but iam on 6 other meds too. my hand and feet are always numb. thankyou for your time. packey

I had sponal botox injection OMG it work instantly but did not last. I could nt afford them as you said no ins. would cover it , but I did have amazing relief. Good Luck.... Linda

glad to be back
 

thankyou for the warm welcome back, life just got busy nothing to do with this:) we did alot to are home and summer is over no more garden, but my pain is still bad it has been in my back alot that is the worse place to have pain for me. this sight has changed more stuff i like it, i hope my freinds have been ok;) glad to be back:wink:

Welcome prepackey. :Wave-Hello:

cenrralpainsyndrome
 

[QUOTE=pono;110548]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?[/QUOT l

Hello prepackpay,
You've been away a long time. Welcome back. :)

I think you've accidentally posted without finishing your message.

If you need help with posting please just let us know.

There's always the FAQ to help as well...
http://neurotalk.psychcentral.com/faq.php
Reading and Posting Messages

take care there.