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!

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?

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?

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?

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.

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

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