Alternatives to Pain Meds

[joan/rusty]

My fiance' has a severe tbpi dating back 16 years, he has been on pain meds off and on for years. The pain has increased recently. He was operated on during the 1st yr post accident by Dr. David Kline at LSU. If anyone has any suggestion on alternatives to pain meds please let us know. We can't seem to get anyone to look any further than to write a script. We have seen Kline twice in the past month to no avail.

[John K]

Hi Joan n Rusty

I an Tbpi since Aug99 I had nerve transfer surgery done by Dr Teil at LSU in Dec99. I still have pain it is a lot better now than it was at first. I dont take any drugs regurlarly. I do take a vitamin DL-Phenalalinine which helps the stimulate the nuerotransmitters in the brain. It seems to curb my pain. I have told drs about it but the dont seem to recognize it since its not a recognized drug. But they dont seem to have any alternatives.

I have also seen an osteopath she helped me alot when the pain was almost unbearable. A good D.O. can do wonders. I have slacked off going to her since my business makes it hard for routine visits.

Rusty should look at his lifestyle if this pain is recent and not normal. Has he taken on new job responsiblities. Increased stress? Is he doing strenous things that he didnt used to do? Also I have noticed Diet affects my pain. Chocolate and caffiene seem to aggravate me. But when im hurting something really sweet will help take the edge off my pain. I also take Advil. The gelcaps seem to work the best but they aggravate my stomach sometimes. I also have percoset as my despation relief. Luckily I dont take these often in fact I still have some left from dec99's surgery. But its nice to escape sometimes.

Did he regain any use of his arm after surgery? My arm is totally flail still. I am wondering about amputation since carrying it aggravates my back and hinders my activites. But its a scary thing to me.

I hope you guys find him some relief.

John K

[lizzyb]

Hi Joan and Rusty

This is to answer your post on the surgery thread too...I have had a TBPI for nearly 10 years now. I won't go into too much detail here or I'll write pages! but my 'story' is on the TBPI website Community section along with others. Here is the link http://tbpiukgroup.homestead.com/Community.html

There is also a page on the site about central pain which might be helpful http://tbpiukgroup.homestead.com/centralpainbpi.html

I have only ever taken ametriptylene regularly for the pain and took it for about 7 years, then because I couldn't take the side effects any more, I gradually weaned myself off it. The only real benefit the drug had was to help me sleep..it dulled the pain a bit for sure, but made me very sleepy throughout the day too, even when I was on the lowest dose. It was very hard coming off the drug as Rusty will probably know, if he has ever tried to do the same.

I haven't taken any drugs for the pain since then apart from the odd bottle of red wine! I do feel a lot more in control now and to be honest, since I gave up the pain meds, it has without a doubt diminished to such a level that most days, I just don't feel any. It is so very rare now for me to have a bad day that I can't remember the last one. I also realised pretty early on that it is highly likely that there will always be some level of pain with this injury and once I had accepted that fact, and I stopped looking for a complete 'cure,' it became far easier to control.

I am taking part in the cannabis trials over here in the U.K. and again, the drug does help me sleep, which is good, but it doesn't leave me dopey all day like the ametriptylene did. It does reduce the pain only slightly in my case, but others have reported that it does work for them and reduces the levels significantly.

Other than that, you are right; the drs just dish out 'new' meds and drugs and basically I think they just don't know what to do with us.

From all the research Jen and I have done on this subject, we have yet to find any reports, personal or otherwise that have led us to believe that invasive pain management procedures involving the spinal cord offer a real alternative either. Most anecdotal reports are pretty negative and even the surgeons report low success rate figures and percentages.

So, what do we do? John is right; if we as long-termers (sounds like a prison sentence!) get a sudden and significant rise in pain levels then we have to try and work out what else has changed in our lives that might have brought it on. (I found recently that very loud unexpected high pitched noises near me brought on sudden breathtaking pain spasms..)I too funnily enough have found out that diet can affect the pain...since I started eating really healthily the pain levels dropped off. Could be a coincidence but I do believe that if you treat your body well, then you can manage pain far better. Having said that, I do like me red wine sometimes!!
Excercise is good too and a recognised way of releasing the natural endorphins or 'feel good' chemicals in the brain.

The amputation question is one that I ask meself fairly regularly, but it is most definitely not a cure for the central or neuropathic pain. It can help with other muscular and spinal pain though....one of our group recently had an amputation and has stated it was the best thing he ever did...BUT he did conquer the pain first...

If you would like to read more about how other people have learned to control the pain, have a look on this board and the TBPI Group UK messageboards; be warned tho, it is far more 'relaxed' than this board!! Please feel free to email if you want to know more or if you just want to talk; also, I could send you links to the relevant postings on the board to save you trawling thru the whole thing...liz@tbpi-group.org

Take care...Liz B :0)

[joan/rusty]

Hi John,
Thanks for your response. To answer some of your questions, Rusty does have some movement above the elbow, his shoulder seems to work pretty well and Klein says his bicep is fairly strong. He is able to hold things against his body with his arm. He does not have any movement below the elbow only the pain and it seems to radiate in his thumb. They recently put him on Neurontin and he is having blurred vision, slurred speech, and some other side effects, he has decided to stop taking it today. They had also had him on Oxycontin and that is not an option for us. His lifestyle has changed within the past 9 months, he decided to quit drinking and I think that had some impact on the pain(I'm sure that helped to dull). Thanks for your sharing the impacts by your diet, that is something that we had never thought of and he LOVES sweets, that may have something to do with it. Where did you find out about the DL-Phenalalinine? I haven't heard of that before. The only reason Rusty has considered the amputation is to relieve the pain....everything that I have heard from the folks who have opted for that is that it doesn't stop the pain. We are trying to find information on a procedure they are now using for chronic headaches where they insert an electrode under the skin atop the nerve that is sending messages to other nerves and the electrode interrupts the signal so that you don't feel the pain associated with that nerve. The challenge is finding someone who knows about it, are they willing to do it and then determining which nerve is sending the signal.
Thanks so much for your thoughts.

Joan

[joan/rusty]

Liz,
Thanks for the links. I found alot of reading material there. I appreciate your honesty and the suggestions.. I read your 'story'....I am impressed...you seem to have a terrific attitude and it comes through loud and clear. It is very 'cool' to see that, I can't say that I know what it is like. Even being with Rusty and seeing what he goes through, I still can't relate to all of it. I do know that we are not giving up and that I am not willing to take the 'usual' answers there has to be a soultion and I will not give up until I find the one for us. Thanks, I really enjoyed talking with you and it is great to have a place to go and find out about this injury. We thought that we were one of a very few.

Thanks again,
Joan

[John K]

Hey Joan

I learned about the phenalinine from a friend who owns a health food store and he also sent me a book on nutrition and vitamins that explains what the DLPA does. I looked at its description in comparison to some of the narcotics my drs were prescribing and a lot of things were similiar. I like the fact that it is natural and my friend said that it cant hurt me in excess. I take 1000mg in the morning and at nite. I have found one from countyline that has vitamin B in it. I like it best and others here have tipped me off on vitamin B's benefits. This one seems to be the most effective. My friend suggests to take it without food it works better. It seems to work best if fresh i refrigerate mine. I have been taking it for almost 3 years and i know when i forget to take it.

John

[joan/rusty]

Hi John,
I AM RUSTY AND I DO APP. YOUR HELP AND TIME. I HAVE BEEN LIKE THIS FOR A LONG TIME AND FOR MY ARM TO WAKE AFTER SO LONG HAS GOT PEOPLE KIND OF PUZZLED. WE DID GET SOME INTERESTING NEWS THE OTHER DAY. MOST ALL OF MY PAIN IS IN MY HAND. KEEP IN MIND I CAN FEEL MY HAND BUT I CAN NOT MOVE IT. IT'S ONE BIG BONE. ANYWAY, THIS DOC. SAID THE PAIN MAY BE COMING OUT OF MY HAND, NOT OUT OF THE NECK. WITH THIS IN MIND, I AM GOING TO A DOC. IN HOUSTON. I THINK THIS DOC. NAME IS NATH,NOT SURE. JOAN IS GOING TO CHECK UP ON THAT.
ON A LIGHTER SIDE, WHAT DO YOU DO? HOW DO YOU DO IT? AND DID YOU DO THIS BEFORE YOUR ACC. ? ON ME, I TOOK FLYING AND PLANNED TO FOLLOW IN MY MOTHERS STEPS NOT MY FATHERS. AS IT TURNED OUT,I HAD TO FOLLOW IN MY FATHER BECAUSE I CAN NOT FLY COMM. SO I DO REFRACTORY
WORK. THIS KIND OF WORK KEEPS ME TRAVELING A GOOD BIT. BUT PEOPLE THAT WORK AROUND ME DON'T REALLY NOTICE THAT I ONLY HAVE ONE ARM. STAY IN TOUCH SEE YA RUSTY !!

[John K]

Hey Rusty

I have met Dr Nath. He is a lot more willing to try different options than LSU was. But most of the options he offered me were more than i wanted to put myself through. I was paralyzed on my whole left side immediatly after my accident but luckily only my arm is flail now. I spent nearly 1 month in a coma with a respiratory tube etc. Luckily i dont remember any of that. All I remember is waking up in the hospital and somehow i knew i was in an accident. I do not recall the accident or getting to the hospital. I only remember closing my store the nite of the accident and meeting a friend for dinner. Anyhow I feel lucky that only my arm is messed up. I only wish the pain would go away. My hand is always crushing and burning. Most days its bearable but occasionally i just have to stay home till it lets up.

I was injured on a motorcycle. I own a motorcycle shop. I used to wrench but its almost impossible anymore. Ocassionally i try thing but usaully i end up grabbing someone and borrowing thier hands to do what i tell them. Its very frustrating especially when you are used to doing everything. I am still amazed some people cant do with two hands what I can do with one. Anyhow I mostly run the parts department and manage the service dept. My brother is a great wrench so I'm lucky I can still keep my business running. It took a big step backwards after my accident but im still in business mostly thanks to my family. After 3 years i finally feel like I'm climbing back to where i was financially before my accident. It takes so much time though. I know that if it wasnt for my shop i'd probably have really let the bpi get me down. My store keeps my mind on other things. My only regret is the business takes so much time I really dont have time to take care of my arm and physical therapy etc. I did it at first but I guess I have given up on any recovery. I'd be happy if it would just quit hurting.

Well i ll talk to you soon John

[jennyb]

Hi Rusty, Liz has already said everything about the pain I would say. I would add that most of us do feel this pain in our lower arm and especially the hand, mine's mainly in my thumb but it moves around the palm and fingers too. Which fingers hurt is thought by some specialists to be an indication of which nerves are injured . I'm wondering why this doc feels the 'problem' is in your hand rather than being a result of the nerve damage in your neck, bearing in mind that the hand is where tbpi pain is usually felt??
If you do work out what 'woke up' the pain after so long, it would be interesting to hear. I have only one spot on my arm with any skin sensation, it's on the back of my upper arm and is hyper sensetive. My husband flicked a fly off that spot with a tea towel the other day, result, 2 days of agonising pain. It only takes something as small as that! Hang in there and as Liz says, be wary of invasive pain control methods which often do not work and can have risks. Ask the doc what proof there is that any suggested treatment will work for you-maybe make a list of questions like Princess has, I think it's the 'Need Help' thread. When it comes to tbpi pain, there's a distinct lack of knowledge out there, you have to do the research yourself.
Just interested, did the feeling in your hand come back after the surgery Dr Kline did years ago?