United Brachial Plexus Network, Inc.

I have horrible, maddening pain.Berserko pain.Bullet-in-the-head-pain. I rotate meds monthly
because tolerance is a real problem and i'm only allowed 15 mgs methadone per day. I've found the effective dosage to be 30 per day but the Dr. says I don't hurt that bad and besides it's all in my head....
methadone is the best for my pain when I can get it and restoril is almost as good as klonipin after I've been awake 3-4 days what with the insomnia and all.(bear with me I'm a lil tired now.) I think my point was that I'm having a lot of pain & local Docs don't believe in what they can't see......where's the bpi clinic in FLA I heard about?I'm brand new to this 'hood. Prez Burke got an e-mail I cast into the void and has shown me a light at the end of this long, dark, tunnel.... bpi-motorcycle wreck 1993 total loss of func. or right shoulder, arm back chest---amputation of arm 3/95 after begging a lot of Dr.s to get this thing off me, a Dr. in Augusta GA finally agreed.HAVE TO DO SOMETHING ABOUT THIS PAIN!!!!!!! Anti-seizure meds make me sick as h**l---tricyclics keep me so depressed I can't DO anything--Viox makes my D**N feet swell 2 sizes....I took topomax for a week and thought I was gonna die.When I take zoloft, paxil, prozac ect the lil fat men come out and poke me with a stick.....(not really but you know what I mean)- I have limited success w/ a narrow range of narcotics and benzodiazepines but the Dr.s afraid I'll get addicted-I ask 'em if they've found a cure and they say no and I say well, I don't see how suicide is Better than a chance of addiction. By the way- are diabetics addicted to insulin? I think all diabetics should imediatly STOP taking thier insulin and check into rehab. D**n insulin addicts.I quit drinking 3 yrs ago haven't had a drop since-starting to wonder if that was a good idea.....Where's the clinic in Fla? I'm in South GA so tell me & I'll GO!!!

Thankyou to Prez Burke for giving me some hope.I was starting to think I was all alone with this...Good night---I'm outta here!!!

The medical resource directory on this site is arranged geographically and can be a resource for you to fine a bpi specialist.
ubpn.org/medicalresources/

It is not comprehensive but does have many of the well known specialists.

Please be very careful about your insulin if you are an insulin dependent diabetic. Not taking insulin can lead to coma and then to death. Check with your doctor before changing any insulin dosage.

Nancy Birk
UBPN President

Ronin,
One small thing to think about. There's a new anti-depressant out there called "Lexapro". Have you heard of it? It's a very effective med and has VERY few side-effects. I have personal experience with family members and others taking this med with good results. None of those people have bpi pain, however, so I certainly can't guarantee it would help you. BUT! It's certainly worth a try. Two people who I know who have chronic pain, both from different sources, have started taking lexapro with a major improvement in their pain. I'm sure this wouldn't be your "cure", but if it helps, it's worth a shot.
Good luck, you describe your agony well - I feel for you!
Take care
Jaime

dude
please check this web site out, they will hook you up with good advice
I am in S Florida, I know of no BPI clinics for adults(that doesnt mean they dont exist tho) but there are some surgeons around, probably Atlanta would have more to offer you,
CHECK THIS SITE OUT and ask there for help
http://tbpiukgroup.homestead.com/index_1.html

ps that last one was from me, Mary, sorry forgot to sign it
mom@bellsouth.net

Ronin

On UBPN website we provide a TBPI message board.
There are many folks posting and using doctors in the USA who will be able to direct you to a physician possibly in your area.
There are many bpi physicians treating adults. Many of those posting to UBPN/TBPI message board have had surgery some could possibly direct you to a doctor they have had experience with.

http://ubpn.org/messageboard/forum.jsp?forum=18

Kath

Hi Ronin
Sorry to hear you're having such a hard time with the pain, I've been there and have every sympathy (I was motorcycle wreck in Jan 1980)
Marymom has posted a link to the tbpi wbsite above, there is an article about the pain in the medical section and also a message board where pain is a very big subject, some of our members over there have been very disabled by pain. A load of us met up last weekend in the UK and the stories of how we all deal with the pain are as varied as the injury, but just talking things through with people who have had the pain and know what it's like is very liberating. Try posting there and on the tbpi board on this site, Kath has put a link above.
The only tbpi specialist in the states that I know of is Dr Kline in Louisiana, he is very experienced with the particular difficulties of tbpi. Doctors who do not specialise in tbpi (bpi caused in an accident) do not seem so knowledable about the pain side of things, long term, meds are not the answer. You should not have to cope with this level of pain, talk to others who have found a way off the damaging pain meds and get some experienced help. I hope you got some sleep, the insomia is the pits.........all the best Jen NZ

Hey Ronin
Sounds like you have been wandering in the wilderness with out much help from the Drs. Read the old posts on this site and you will get lots of ideas and you will know that you are not alone!!!
There are a few drugs that are non narcotic that might help and you should be able to get from any of your Drs without waiting for a BPI specialist. Elavil is great for helping you to sleep. I take it even though it takes me an hour to wake up properly. Every thing is better with a good nights sleep. I also take the Lexapro with good results in dealing with the changes that I have had to cope with since my BPI on 6/02. Hearing part of your story makes me realize how lucky I was to find this site for the info as well as support from other BPIs.
Try the other message board on this site as it is directed more for adults that have been injured, lots from MCs, as opposed to the children injured by Drs afraid they might miss a tee time at the golf course. Also try the board in the UK as it is full of veterans, like yourself, of years dealing with BPI and the pain and frustration and the pain and the Drs and the pain and the depression and the pain.
I live in WV and can help you find a Dr here but there are some closer to you as I have been in touch with at least one BPI from south Ga. and will look up his address if you need me to. Send me an E mail as you can get my addy by clicking on my name. Try posting on the other message board and hang in there as there is help out there for you. Red Wilson

http://pub28.ezboard.com/badultswithbra ... usinjuries

Ronin

Here it the link to Dr.Belzberg in Maryland and some information on Johns Hopkins Hospital in Maryland.

He will be a speaker at Camp UBPN at the end of August and his topic is Adult Pain Management.

http://ubpn.org/medicalresources/be ... ntact.html


There will be a team of BPI Specialist all providing a Medical Panel on Friday night... Dr. Abbott - NY, Dr.Simon-NY, Dr.Maniker NJ, Dr.Belzberg Maryland.

While camp is closed I don't want you to give up hope that you can find a BPI specialist.

Here is a link to a page on Pain
http://www.painonline.org/solution.htm

Hang in there we are all here for you

Kath

Hi Ronin...I hear what you're saying about the Drs and your pain and the drugs etc. It makes me sick and bluddy furious when people tell me that the Drs tell them that their pain is all in the mind...!! how DARE they? These so called Drs have no idea what they are talking about and because of a few archaic laws regarding opiates etc some people suffer needlessly for years.

You should be offered whatever drug YOU feel is right for you. Most Drs apparently seem to think that if you are prescribed what THEY consider is too much of a certain drug(s) then you are going to abuse it in other ways...well they can easily check up on your usage with regular blood tests, so no excuse there.
Like you say, and I DO understand this PERFECTLY..better addicted than dead.

..but then again, we all know this: heavy use of ANY drug isn't really the answer (little men tormenting you and other such weirdness...ooooh yesss, I have been there too...! :0() You need to get your life back, to start really living again and do everything you can to stop the pain and the drugs taking over your whole life...there ARE ways to do this..it takes committment, strength and time, but it CAN be done. I think we all of us realise that there will always be some level of pain with a severe traumatic BPI, but in most cases, it can, with the right help and support, become just a shadow, something that isn't even noticed most of the time.

Check out the tbpi group website; http://www.tbpi-group.org Loads of people there getting on with doing some remarkable things, and everyday stuff. Read some of the profiles and stories there...I think they will help you.

All of us are here for you and we HEAR you loud and clear; you are NOT ALONE my friend...email me anytime you like liz@tbpi-group.org

Liz B