United Brachial Plexus Network, Inc.

Hello all,
I'm currently off of methadone, after six weeks of hell from withdrawals. Next is the Neurontin. I was almost off it before but life got in the way, so I'm at it again. Pain is at me full time and nasty and I'm not even off the Neurontin.

Any ideas on how long (if it even happens) the body takes to climatize to the pain. Or should just I pitch tent up here on top of Mt. Pain-Everest in this neurological blizzard, stop whining, and hunker down for life?

I read Hwee Yong's post "Advice Needed", on the same subject, but answers were posted to him privately.

Any insights to this would be greatly appreciated.
As I am not looking forward to a life of pain.
But am looking forward to seeing if I've been seeing straight or not for the past two plus years of my life.

Thanks all,
Christopher

Hi Chris,

It's good to hear from you! I'm so sorry you are dealing with pain - that, to me (obviously just an observer) certainly seems to be the worst part of this whole injury.

How much movement have you gained so far from surgery? I have been thinking that was the key to John's ability to get relief from his pain. I hate to think that this might not be true in your case.

Ellen

Hey Christopher! Long time no chat. I can't believe the balls you have by getting off the meds. You have all my respect. I think about it every day, but i get too scared of the pain. I almost whacked myself twice in the beginning because of the pain and I don't know where I would get the extra strength to go thru it all over again.

At least you've made some progress up mount BPI. Is this the top for you? The answer to, is it possible for you to survive with the BPI and the pain?

Look at your tally - you kicked oxy, you kicked methadone - you're free of the opiates. I remember someone, maybe Kath, talking about coming off of Neurotin in order to have kids. She said it was hell at first, but it faded over time and she got thru it. One word of caustion: don't quit neurontin cold turkey, because it can cause seizures. It is an anti-epiletic (sp.?) and can cause seizures if you stop cold.

Good luck and take care. With all my heart!
LOVE SUSAN

Christopher,
Glad to see you are still amoung us. And still providing inspiration I see. Bro..if you get off neurontin, your my hero. If there is anything I can do..just holler. I bought a book about pain.."The Pain Cure". I do recommend it. It breaks it all down, and its cheap. We need to do a tbpi picnic for southern Californians, don"t you think? I'm up for that, any takers? Keep fighting the good fight....Karl...

Hey Chris,
I was originally on 40mg of Oxycontin 3 times daily, 800mg of gabapentin(neurontin) 3 times daily, and 75mg of amiytripilyne once daily. Now i am only on 50mg of Oxycontin a day. Surprisingly i thought that the neurontin wasent as affective as the narcotics. I am currently in year two of my tapering of of my medications. I think going slowly is a key part of coming of the meds. For me the hardest was the Oxycontin as far as pain and withdrawals were concerned. My pain is probably about a 3 out of 10 at the best of times and at the worst it's probably about a 6 out of 10. This is really good considering at the worst of times the best was a 5 out of 10 and the worst a 10 out of 10. So don't worry there is a light at the end of that tunnel of pain. Anyways just thought i should post my story since its not all bad.

Andrew

Heres some background info on my Injury:
My injury is a complete RTBPI suffered about 3 1/2 years ago. I have two avulsed nerves and the rest were severed. Surgery was preformed about 3 months after my accident where they took nerves from my legs and transplanted them into the usable brachial plexus nerves.

Well this is a question that has as many varied answers and theories as the whole convoluted and complex injury itself.

All I can do, like everyone else, is to write about my own personal experiences and theories formed from years of studying TBPI, and the pain associated with it, which is without doubt the most incapacitating element of these injuries.

I won't go into a load of detail here because it would fill up several pages but things I have learned over the years are these;

At the beginning, the pain drugs do help if only with getting a reasonable amount of sleep, even if it is just short naps during the day. They also numb your mind and turn you into a zombie. This is probably very helpful for some people very short term as it does help numb the senses and this in turn helps to get over the initial trauma and shock.

Taking several different kinds of drugs are (according to my research anyway) probably not a very good idea unless the amount of dosage is strictly regulated and very carefully monitored. I read too many times about Drs. just dishing out the pills without any thought or regard for major side effects and other problems. The pain, again according to my research and what I have read, is hardly affected by taking several drugs, in fact in some cases the pain gets worse. This seems to be more often the case when opiates are involved.

In the long run, there probably isn't one or even a combination of drugs out there at the moment that will cure the pain completely. There will probably always be some element of pain, but my research again proves time and time again that the pain reduces significantly at or around the 2-3 year mark after the injury. Several theories about this including;- we get used to it; The body gives up sending certain kinds of pain signals to get a 'fix' of drugs.

Stopping the painkillers (and I mean slowly here...!) will not necessarily make the pain worse. People who were on opiates seem to find it harder to come off the drugs, for obvious reasons, but once they are completely gone from the system, and they are more mentally positive about the situation, then things do improve massively in many cases.

Many times, the fear of more pain understandably prevents people from attempting to slowly ween off the so called painkillers, but until the person feels it is the right time to do this, they should maybe wait a few more weeks or whatever then very slowly cut them down. I can't stress enough how important it is to reduce the drugs very slowly. Support from family and friends, and even the doctor can be a huge help.

As I said I could go on and on here...all I will say is this...it needn't be a life of pain and thinking that it will be is definitely not the way to look at things, or live your life.

Sorry if I'm being a bit harsh here, but a bit of positive thinking can go a hell of a long way to beating the pain down. You have good days, you have bad and my attitude is so what when I have a bad one. I KNOW it won't always be like that and I truly believe this is why I can go weeks without any pain at all until something sets me off, like cold or stress (or someone talking about it!)

I will advise anyone who is still taking the 'painkiller' drugs after 2-3 years to seriously try getting off them. They don't work anyway, if they did you'd be pain free, right? The side effects are pretty bad sometimes and believe me, as someone who was on heavy duty stuff for nearly 6 years, I can honestly say I wish I'd given them up far sooner that that and got my life back well before then. I was well sick of being zombified and didn't real;ise what I'd been missing until I was free of 'em. It took about 3-6 months before I could finally see a difference after taking my last tiny dose of ametriptylene.

Hang in there my friends...life drug free is bluddy great

A couple of things worth reading..try Yeti's (unfinished so far unfortunately) diary of experiences at one of the top pain clinics in the UK. http://p072.ezboard.com/fadultswithbrac ... uriesfrm10 and http://www.tbpiukgroup.homestead.com/ce ... inbpi.html

Lizzy B

Hi Christopher,

In my dad's case, he has to stop taking pain killer because we worry about the side effect of it affecting the kidney. He has no choice but to stop it. The first month is just too horrible coz of excruciating pain all day. Then after the first month, his body slowly get use to it and the pain just goes off and only little pain left. However, just when he believe that the pain is gone, it come back again but I believe that it will be gone again since Lizzy and Courtney managed to get off the drugs.

Do be positive and the worst will be over soon. Hang in there.

Hope what I write here help a little.

Cheers,
Hwee Yong

Lizzy,
You just spelled it out perfectly with what you just said there. I hope to be finished with my drugs by the end of the summer. One thing i would like to ask you is what do you do when the pain gets bad? I am afraid that if i do get into a situation where the pain does become bad i will have nothing to help ease it. I have had pain where all i could do is lye on the couch and sleep. Now that is the worst situation for me because the busier i am the less pain i get. Anyways i was wondering if you use any medications/excercises/any other alternative measures when you get bad pain. Thanks for that post Lizzy

Andrew

Thanks All!!!

To each and everyone that gave some info here or there. All together and each on it's own was/is very helpful indeed. I'd give you all a hug, kiss, shake, slap, or whatever made you feel better for spending the time to help a man in need. I only come to these boards like one to religion, at times of need, the greatest difference is that when I ask God a question the only response I get is 'you don't know the answer to that dumby!' What a relief to be helped and not insulted at the same time. You're all in my will!

Cheers,
Chris

Thanks a big old bunch, LizzyB. Certain parts of what you said were great for some things and others for others. Having information and specifics to look at and compare notes to really helps.

Eg. - "It took about 3-6 months before I could finally see a difference after taking my last tiny dose of ametriptylene." A statement like that might be ignored if I read it somewhere else. But I take it as the Gosple now, after two years of rock hard brick shaped constipation from oxycontin and methadone, now I'm dealing with the aftermath of that and the withdrawals. My stool, if you want to be that generous and call it that, a stool ha, is personally referred to as 'mud season', three months off the opiotes and my intenstines are barely able to sit up staight in thier chair, more like slopping onto the floor like overworked school kids during final exams. Schools out and summer is here, no more mud season for me. I wont take no for answer. Tells you how bad that stuff beats on your insides, I couldn't eat anything for a month with out feeling sick every damn time, after I dropped that Methadone.

Any way thanks all!

Susan good to see youre still around and kicking. I must write you some day soon, when my crap is together enough to sit for ten good minutes. Hope youre well.

I wish all a painfree day....I can wish cant I?