pain

[cass]

i am so tired of this pain. tonight is really bad. i participated in a research project where i was told there are 3 kinds of neuropathic pain. somewhere in my notes i have it written down. but right now, i don't care. i don't care if what they said is right or wrong. they said i have all 3 kinds. all i know is, i am a single mom to 9 yr old. and he is suffering from this pain as much as i am.

and i am so sorry for him. cause his mom cannot function like all the other moms he knows. it isn't the paralysis. it's the pain.

no, i won't take 3000 mg of neurontin, on the off chance it will work. none of the rest of them did.

i told my son, maybe some day you will grow up and stop people from this pain. people think paralysis is the worst thing. all i can say is, try this pain. paralysis won't seem so bad.

well, thx for listening, if you got this far. i'm not looking for advice, certainly not recommendations on medication.

i just felt like writing to take my mind off the pain for a few minutes.

[Wise Young]

Cass, I am so sorry to hear about your pain. The three categories are nociceptive pain, neuropathic pain above, and neuropathic below the injury site. I can understand your reluctance to take neurotin (gabapentin) although it should not have that serious side-effects, except that you need to ramp up and taper off the drug.

I know that you do not want "advice" but let me offer one suggestion. You may want to consider taking acetaminophen (Tylenol) when the pain is bad. It does not need to be ramped up or tapered. This would be similar to the same way that a person would take the drug for a headache. Several people have told me that acetaminophen is effective for such situations.

[alan]

You're definitely right about pain being worse than paralysis. Pain is the reason I have no life, and can't concentrate on anything for more than a few minutes at a time. Paralysis doesn't keep me from going out or doing things a person of my level should be able to do, but pain does.

Dr. Young, isn't there a daily limit of how much acetaminophen can be taken, as it can cause liver damage at high levels?

[This message was edited by alan on August 24, 2001 at 08:11 PM.]

[cass]

alan, what do you do for the pain? for me, only alcohol has helped. which is also why i won't take tylenol. read the two should not be combined.

i take only aspirin, but in the face of this pain, it's merely a placebo.

dr. young, i will look up the info the researcher gave me on my pain. he wrote an article for new mobility a couple of years ago. right now, i can't think of his name and all my info is on my work computer. i believe he is a dr. himself, who suffered a surgical mishap, resulting in severe pain. he couldn't even stand clothes touching him. last i heard from him, i believe he was going blind as well.

found the article, here it is http://www.newmobility.com/review_article.cfm?id=85&action=browses:

[alan]

What do I do for the pain (other than wish I'd wake up dead?) What haven't I done? I had a laminectomy to search for a syrinx (there was none), I had a spinal cord stimulator implanted and its position revised three times before it was removed a year later, I've had epidural morphine and intrathecal baclofen test injections, I've been through numerous pain doctors and neurosurgeons, and tried dozens of different medications (either they caused intolerable side effects or the ones I could tolerate had no effect on the pains.)

I wish I could give you some good advice, as that would mean I'd found relief, but I unfortunately can't. All I can do is empathize, and hope something develops for all central pain sufferers.

[Wise Young]

Alan, it is true that acetaminophen can cause liver damage but this is only after prolonged daily ingestion of large amounts of the drug, exceeding 100 mg/kg. Acetaminophen toxicity results from a free radical metabolic byproduct of the drug which, because the liver breaks down the drug and its metabolic byproducts are highest there, tends to damage the liver.

The pain that you, Cass, and many others have is, in my opinion, must be one of the highest priorities of research. It is probably the major cause of suicide. Many studies have shown that pain is more disabling and a major drag on quality of life for the community. I believe that there has been much progress in research on pain and that some of this progress will soon be reflected in clinical trials of new therapies that will help. However, we can continue this thread perhaps in the Care or Cure section.

Cass, I am sorry that I introduced a medical suggestion despite your indication that you did not want suggestions of this type.

Wise.

[etexley]

I don't know if I can empathize, because only we know what we are feeling...not doctors, or therapists, or anybody. But I do know that what I HAVE to do for pain is get cardiovascular exercise ... I don't know why, but it seems to help.

Also, I used to suffer lots of lower back pain, but is was because of poor sitting posture. Dr. Kao corrected this with a small pillo when he evaluated me. In six months of therapy, nobody ever told me this.

Eric Texley

[cass]

don't apologize dr. young, for trying to help. i appreciate it.

[Sue Pendleton]

Cass, have you seen a pain specialist? They can work wonders for some people. Others find massage highly effect and I understand calling it "soft tissue manipulation"may even get insurance to shell out for it. As a single Mom, please do not give your child the idea that alchohol is the key to pain. I know how hard this can be and Wise is correct, a good deal of SCI suicides are due to pain (yep, researching numbers again). But please try alternatives first. If asprin helps even a little have you tried the "super asprins" like DayPro?

Sue

[cass]

Sue,
I assume your intentions are good; however, I take offense at your assumption regarding my parenting skills.
I have been injured over 15 years. Of course, I have seen pain specialists. Frankly, that is rather a ridiculous question to ask. I have heard every suggestion in the book and tried many of them. I was not asking for further advice, simply stating my frustration with having to live with this pain.

[craig]

I'm so sorry to hear you are in such pain cass. I had no idea you were in such pain as we have chatted late at night and you never complained. I'm up for the same reason at that time of night.

As I try to work with Dr Martinez and Dr. Green at the Univ. of Miami I am ready to just give up. We have been at it almost 2 years (I live 5 hours away) and today the pain is so intense. I just don't think I can handle another medical procedure. They (my doctors) think they are close to an answer but it has taken so long. A milogram (sp) is next.

Vodka workes for me but does nothing for my marriage. I now take 2000 mg of neuronton, Vioxx, and 20 mg of oxycontin when I can't stand it anymore. Can I spell my name at the end of the day after all that medication ? No way !

I just wanted to vent myself today. I feel like I am alone sometimes but I realize that I am not and many more ppl are in the same boat.

Thanks for a place to blow off steam cass , and Dr Young

craig

[melliska]

hi cass, i thought i'd post my reply to your other post in here since i also have something to add on the topic of pain.

i was wondering...when you were at that statue dedication did you happen to be in a powerchair and not wearing any shoes? and do you have dark brown hair? if you say yes i just might fall out of my chair because my mom saw you there. there aren't many people in chairs around this area, so when my mom went to the dedication she noticed the new face.

anyway, on to the pain http://sci.rutgers.edu/forum/images/smilies/frown.gif i don't know if you saw the new mobility pain article, but alan and i were the ones in it. i have a lot of pain when sitting in my chair so it keeps me from doing a lot also. before the pain started i hated being paralyzed but i could still go places and do some things. (i have a c6 injury.) now with the pain i still hate being paralyzed, but i also don't get to do things that i could still physically do. the pain keeps me in bed all but about 7 hours a day so i don't have much time to do things, plus when i'm up i'm in so much pain that i can't do much anyway. i haven't been able to start college yet which really bothers me and it really doesn't help to hear people saying that it's "such a waste." i realize that i should be at school, but we haven't been able to find anything to help the pain so it's out of the question for me right now. people just don't seem to understand how pain can ruin a person's life. that is why my aunt told me in an email to "get off my 'sore' butt and go to school." that hurt just as much as the physical pain. i am really glad i was able to be including in that article because all my relatives have had the chance to read it and are finally realizing what the pain is doing to my life. i guess i always assumed they knew how bad it was, but now i know that they had no clue.

i've had some tests run but nothing conclusive has shown up. they believe that some of the pain is neuropathic, but they also think there is physical pain as well. i'm on 3200 mg of neurontin a day and i also take the max dose of 750 mg hydrcodone/apap pills a day. i tried the oxycontin route but the benefits weren't great and certainly didn't outweigh the side effects.

i don't really know why i posted this all here but i guess i just felt like talking about it too. if you ever feel like talking send me an email. alan and i have emailed back and forth a couple times and it was nice to be able to talk to someone else about chronic pain. i don't usually like to talk to people about it because i feel like i'm whining, but i don't feel bad discussing it with someone else in a similar situation.

i hope you, alan, and craig are all having a low(er) pain day today. melissa

Life is a lesson you learn when you're through.

[Sue Pendleton]

I'm sorry, Cass. I did not mean to question your parenting skills. It's obvious that you are still managing in the world and you did say you wished to be able to do more with your child. It's just children have some sort of inner sensor sometimes and we sometimes forget how impressionable they are. Pill bottles are probably not a great model for kids to see either but most of us do have pain of some kind and have to deal with it or it deals with us.

I remember vividly months spent feeling like I was sitting on a razor balde right under my left butt cheek. I couldn't believe there was no red spot, no open skin, NOTHING not visible because it hurt so bad. I wasted months because I just was incapable of doing anything else when that pain was there. I never made it to morphine but methadone was tried at one point for the buring in my thighs. I told my doc finally to try that again. He suggested accupuncture and that worked..for me. But I know so many who get no or very little relief from pain meds or alternative medicine. You didn't say how long you were injured in your original post so I suggested the pain clinic approach. At 15 years, yea, I bet you have tried everything.

I am sorry for the tone of my reply, Cass. It was uncalled for without further information. I also talk to Alan occassionally and wish there were something that worked for everyone. Hell, I wish I could find something that worked for me each time and especially when new places show up and without the side effects. I have the feeling that the cure for pain is the cure for SCI.

[alan]

I can certainly state that the pains would be more likely to drive me to suicide than the dependence of quadriplegia. Without the pains, even at my level of C-5 there are a lot of activities of daily living I could be taught to do (though I'd need to go to a rehab to learn how to do them.) With the pains, no way. Sure, I'd rather neither pain or quadhood (I'm no fool), but if I had a choice between the two, I'd keep the quadhood.

[cass]

Sue,
Thank you for understanding. I hope my first response did not sound rude. But I try so hard to be a good mom. And, of course, I should have realized you had no idea how long I have been injured. So please, accept my apology now.

Melissa,
Yes, indeed, I'm sure that bare-footed stranger was me http://sci.rutgers.edu/forum/images/smilies/biggrin.gif Except for the hair, your mom had it right. I have blonde hair, but that day I was wearing a hat to keep the sun off. My son's paternal grandparents live there.

Which NM article on pain? The one I referenced below also quoted me.

Alan,
I placed this post in this forum for precisely the reasons you state. It is a life issue. It is something we have to deal with daily. I have seen most and tried many offered medical solutions (including, btw, acupuncture and massage)and none work. So, I simply wanted to vent my frustration.
I have driven from Seattle to Iowa with just my son (I am C7, btw). And to L.A. and to Colorado. I do it mostly for him. My days and nights are ruled by the pain and it is incredibly frustrating not to be able to enjoy these trips.

I work fulltime the rest of the time and drive my son to soccer, piano lessons, etc. I snap at him too much because of the pain. We have many discussions about it. Since he was born 6 yrs after my injury, he knows no other life.

I used to fly airplanes, camp under the wing...well, I could go on, we all could. Those types of things I can't share with my son (without help) really get to me. But...the pain interferes with going to the zoo, the science center, the ocean....etc. etc. And dammit, that isn't fair http://sci.rutgers.edu/forum/images/smilies/frown.gif
But...it's the life of those of us with pain.
Just talking about it helps. Because, I think, we are conditioned not to. People who don't experience it don't understand and really don't want to hear it. And I don't blame them one bit. LOL Craig, yep. You never heard me mention it in chat. Well, I seldom do. But....maybe that's changing...

[melliska]

wow, i guess it really is a small world. the next time you make it back you'll have to let me know.

the pain article was in the august 2001 magazine. it was written by sam maddox. it has some info on treatments including some new ones that are being worked on now. you have probably tried a lot of what's mentioned, but there might be something you haven't. i hope something new is found that can help both you and alan. i've been in pain for 2 years and i can't even imagaine how hard it is after many more. melissa

Life is a lesson you learn when you're through.

[TD]

I am a T4 incomplete and have only been dealing with this pain for 6 years. I have run the gamut of pain reduction medications. I currently take 1200 mg of Neurontin and 400 mg of Ultram a day to deal with it but it is always there.

I went through everything from percoset to morphine to anti-depressants and nothing helped. I even tried marijuana but it did nothing to kill the pain, only made it tolerable. http://sci.rutgers.edu/forum/images/smilies/redface.gif Because of all the medication I cannot drink or I would try alcohol.

I will note that baclofen has helped with the pain some esp. since I have it administered directly to my spine through an intrathecal baclofen pump. I also suffer from severe spasticity which is the reason I have the pump. I cannot try TNS because it would fry the electronics in the pump.

I saw a pain specialist who wanted to add lidocaine to my pump. That would anesthetize the area completely. It is a drastic and expensive way of dealing with our pain which I have resisted because it would block all sensation.

The best thing I have found is what I call "diversion therapy". When the pain is really getting to me I find something I really have to concentrate on and dive in. It takes my mind off the pain for a little while at least.

"And so it begins."

[David Berg]

Cass,

If the pain you're experiencing is neuropathic pain, then perhaps you'd have an interest in my site, PainOnline (http://www.painonline.org). I don't claim an solutions, just information.

I have the site more or less divided into seperate sections for patients (mostly thoughts about the challenges of dealing with central pain), and for doctors (medical information about central pain and current pain research).

While I'm not a victim of SCI or central pain, I have heard from enough people to understand why you say that the pain is worse than any of the other problems caused by an SCI. Too many people have risked paralysis or worse by having a cordotomy to relieve their pain. Unfortunately, cordotomies and other ablative surgery can often result in worse pain. They might feel great at first, but 6 or 12 months later the pain comes back worse than ever because of nerve damage from the surgery. I've heard about this happening too many times. Most docs, such as Ron Tasker in Toronto, totally quit procedures such as cordotomies years ago. Heck, I've heard from non-paralyzed patients who said they would gladly become a quad if it would only stop their unrelenting pain. Of course, that wouldn't stop their pain, just cause more problems. And I'm not going to judge the statements of those who would choose voluntary paralysis over pain, but I can understand why they would be that desperate to escape their pain.

I hope that you might find something of value at PainOnline.

David Berg
PainOnline webmaster
http://www.painonline.org

[Wise Young]

David, thanks for letting us know about your site. It is a great resource. Thanks for putting it on the Links forum, as well.

I was wondering whether people think that it would be useful organize pain postings into a separate forum. It is a huge subject that doesn't quite fit in the Care or Cure sections.

Wise.

[cass]

David,

Painonline used to be Kenneth McHenry's site, with whom I exchanged several emails in 1997. I provided a link to his article in New Mobility in my post below. Do you know him then?

[David Berg]

Cass,

Dr. McHenry orignally started the site when he had two pre-med students to help with things like dictation and the web site itself. After the pre-med students graduated from college, his health prohibited him from maintaining the site or doing any more writing to speak of, except when he was able to find someone else to assist. At that point the site went off-line for a few years.

At his request I took over everything regarding the site and took over the copyright for all of the articles. I worked with the material on the site for a couple of years, studying and working with the existing writing. PainOnline.org made its official debut this past May. I've at least done a thorough edit of all pages from the previous site, and some were totally rewritten or compiled together. I've continued to add new pages to the site and to conduct additional study on central pain. Unfortunately, Dr. McHenry's health prevents him from taking an active part in the site, or anything else for that matter. It's a shame, since he has a talent and a unique perspective that would be so valuable if he were able to write and research on the subject.

David

[T Hansen]

I know tou don't want to here it. But please try the Neurontin.I take 3600mg Daily it really helped me. I know what your going trough.Pure agony. I hope I haven't upset you. I send this note with LOVE.

[Joe B]

When Dr McHenry put Painonline on the internet it was the first time I had seen anyone describe the pain I was having. It was such a strange relief to see that I wasn't alone with it and to have a name to put to the strange pain that had distorted my life. Too many medical people were unaware of this type of pain and here was a Dr who recognized it, described it, and was trying to do something about it.

I know Dr McHenry suffers from this pain and I wish him as much relief as possible. I want him to know he made a big difference in my life. I exchanged only a few emails with him giving a description of the symptoms of my pain. But his replies were always kind and empathetic

Joe B