United Brachial Plexus Network, Inc.

No worries, Christy, it's a fact that just as in space noone can hear you scream, in cyberspace noone can see you smile :0)
I think neurontin is an anticonvulsant? Studies have shown that these drugs can be effective in some bpi pain but the side effects (commonly drowsiness but there are worse ones) stop some taking them. It's somewhat complicated by the fact that many of us may also suffer from PLP (Phantom Limb Pain) which is commonly associated with amputees, but can affect anyone who has no feeling/sensation in their hand. I've never found any prescription drug that deals with these 'phantom' pains, which are as strong as labour pain at times and an episode can go on for days! The PLP is thought to be caused by the brain sending signals to the hand to find out why no messages are coming in from that area, these messages have nowhere to go, nerves to the hand having given up the ghost, so there comes a massive build up of crushing, overwhelming pain as the brain sends more and stronger messages to get a reaction. tbpi whose severe pain is still present more than 3 years post accident usually have multiple avulsions and no feeling or movement in the hand or lower arm, in other cases the really crippling 'chip fat fryer' pain usually goes away by that time. All the other bpi pain in the joints and muscles of my arm, neck, back and shoulder I can deal with, this PLP pain that takes over my whole being is untreatable for me except with cannabis as described so eloquently by Hazel!

Haze, just wondering if it's got easier to get supplies now cannabis is pretty much decriminalised in the UK? I'd always recommend herbal over solid for the best pain relief if you can get it.......

Katie's therapist had to overhaul the therapy schedule and the pool was closed for a week so we have not had therapy (formal) in almost two weeks. I have noticed a great increase in grumpiness, temper meltdowns and increased complaints of pain since the second missed visit (she has four a week) along with weather temp swings so maybe that is what is going on. Do the hot tubs really help?

I wonder if the kids getting more "assistance" as in therapies, surgeries, ect earlier will help them over what you present adults experience, in the long run I mean. We too would prefer to find alternatives to drugs for her as she just doesn't do them well at all. Not that we've tried more than the tylenol/codeine but even that just doesn't seem to cut it. I do know that blankies on the face and arm at night helps somewhat.

I work in a medical setting and diabetes with neuropathy is prevalant in our area. Once these people start reaching deeper into the disease process the pain they have appears to be so severe that it becomes disabling. I recall my late step father (bi lateral amputee to PVD) just taking meds on top of meds, never sleeping, rubbing and rubbing his stumps when he would have the "phantom" pain. After his first amputation he actually let the gangrene go so long his body self amputated several toes on the other foot before he would agree to the other amputation, he said the pain of the missing leg was so severe. We've had reports of elderly people that would never think of abusing drugs becoming addicted to pain killers and of course they need more and more as time goes on. That is so hard on them, physically and emotionally. And to have what may help you have such side effects that one would choose not to go that route is saddening. We don't have many BPI in our area that I am aware of so I wasn't real certain what could and could not be used to help. I was reading an article recently that quoted an increase in magnesium intake (also in supplement form) helps many things but the pain receptors as well. Have any of you tried that? I recall a psych/pharmocology specialist I worked for used it for her female patients with severe menstrual cramping and pms as well as males with other pain syndromes. She said that is why some women ( and men, don't let me forget them! they get crabby too) complain of "chocolate" cravings--their mag is getting low. It did seem to help those patients, which I doubt cramping compares to the nerve pain. Not from what we witness around here anyway!

Any other ideas in the form of herbs / alternative treatment that the adults have tried? I cannot fathom a two year old taking accupuncture, she is a wild woman as it is and while I have gotten relief from chiro care I worry about her getting it--especially with the docs telling Kath not to have her neck pulled on. thanks everyone. BTW--did your friend ask his dr about getting company assistance for his pain meds? I asked some of our social service people and they suggested the same thing but also to research the hospital services as some of them have clinics that will actually provide meds free and the income qualifications were quite liberal, not like with a public agency.

Hi..Just thought I'd chuck my bit into the pot here(xcuse the pun ladies!)This pain thing is without doubt the hardest thing about this injury. Like most if not all the people with long term tbpi here, and likely all the people who have an obpi too, I think the pain associated with this injury is by far the worst aspect of it all.

I took any drug they told me to at the beginning, everything and more to try and get some relief. It took me years to realise that the side effcts were actually not worth the minimal relief that I did get sometimes, so I decided I would give them all up. (not easy, as I will admit here that I was addicted to a couple of them.)I have not smoked cannabis for the pain, but I have taken small amounts in other ways, and I have to say, that personally, that never worked for me either.

The ONLY thing thats really works for me is sheer bluddy mindedness; I refuse to let this pain get the better of me...I get on and do things that I find totally absorbing, and my brain doesn't have time to spend experiencing or creating the pain...does this make sense? :0) If and when I have bad days, (not very often now) and the pain is bad, I know that it will go...eventually...even if I have to put myself to bed and kinda sleep it away.

I make a conscious effort to keep my life pretty stress free as I know that stress can make it worse; I eat a really healthy diet and take extra vitamins too; I get loads of fresh air and do a bit (not as much as I should!) of excercise. All these things together I think help to keep the pain at bay. I have never tried anything alternative like acupuncture simply because it would concentrate my mind too much on the pain and the effect that the treatment may be having on the pain. My mind would be tuned into it so much to try and detect the slightest change, and that would make the pain more intense for me.

It must be so much harder for the kids, particularly the younger ones; they don't have that certainty that the pain will go away sometime; there is no way they have the experience to know that, and it must be so indescribably hard for the parents to see their child go thru all that....all I can say is maybe what works for the adults would work for the kids; distraction, excercise, stress free environment (not easy I know..!) that includes a regular routine like swimming etc; Cristy, maybe this is why Katie is a bit grumpy as you say; her routine has been broken...together with weather changes, all these things add up. I know she is very young, but have you tried visulisation with her? or role playing? My 3 year old grandaughter has fairly severe asthma, and could get quite frightened at night feeling she couldn't breathe, so we told her a big long story about how the medicine fairies that lived in her trumpet inhaler would float down on fairy dust and open up the doors inside her to let the air in..but she had to help them by taking breaths...well, you get the picture! ;0)result was one kid who was more than happy to have the inhaler held over her face, and a peacful night for all...my 'visuals' are wrapping my arm in cling film and shoving it in the fridge..maybe try a 'magic bandage' or something like that with Katie; I do believe that within us all, somewhere, is the strength to handle and beat chronic pain; we just need to teach our brains to ignore it and not let it rule our lives...easier said than done I know, but, with help, not impossible I think. It does work for me. In truth, so far, it's the only thing that does.

Anyway; sorry about this rambling post...I probably haven't been any help at all! Each one of us finds our own pain relief one way or another, and I certainly wouldn't presume to say one method was better than another, just what works for me. (mostly!) Peace, love and a big hug to everyone in pain, young and not so young.

Lizzy B xx

lizzyb

You are right about the drugs... they just don't work for me ... When I was young they gave me Vit..B shots and pills.... but any drug seemed to cause problems with my chemistry... so I just would not take any... I hated the feeling of being numb and also it did not change the level of pain... ( except as I said the Vioxx I took two years ago - to bad I had a bad reaction to it...) I have to keep busy or I will pay attention to the pain... of course my injury is real old.... LOL... but I still have those problems... I also walk 4 hours a week... and keep my self very involved and busy...

as far as the kids go...
Up until 10 years ago they believed that babies did not feel pain... and some were operated on with out drugs.... Now a harvard study says... they just react differently.... (newborn's i mean)

Growing spurts will really start the arms sparking... and pulling and tugging etc... can start the sparks again...

I think when my arm feels good is when I don't know its there... or I use to call it asleep with out pins and needles... or back brain

After years of overuse... it is the healthy arm that experience all of this now... and weather and all sort of things can stir up the pot... LOL....

I have so many hobbies to distract myself... and have always been considered hyper-active... I seem to be constantly on the move just as I was as a child....

So for the parents who's kids seem like constant motion it is the childs way of compensation or distraction...
My Mom famous works " Kathleen's fanny and a chair only have a passing aquaintence" they use to accuse me of having "ant's in my pants" because I never sat still....
Hey christy.... Katie does not sit still... hmmm must be in the name... my parents called me Kate till my dad died... then no one ever called me Kate again....
my granddaughter Katie never ever sits... she is a year old... and is constant motion...
Kath

For my sharp, shooting pain, which comes on every few months, usually associated with getting a cold or being stressed, I'm on Neurontin. Its the type of drug they give to amputees for phantom pain and its pretty good, but not perfect. The only thing that used to work was good ol' Vicodin, but at first its zonked me out, and then I built up a tolerance so that it was no better than an aspirin.

Hi! I'm Jenny. We live just east of San Diego and my daughter Elizabeth has a rBPI.She is 10 weeks old. Her entire arm is flacid and we just scheduled her first surgery at TCH in November. Now we just have to figure out how to pay for it;) the docs we have seen so far just don't see any reason to go in there and "mess around" as they say. So they aren't forthcoming with the referrals. Anybody else run into this? How did you deal with this? Anyway, this is the intro so I'll post on another topic. Glad to have found you all.thanks,
Jenny

Hi all. I think most of you kinda know who i am but i jst thought since i have nothin 2 do ill write about myself. So...im 16 and i have erbs palsy on my right arm. It dusnt bother me much apart from when i see myself in videos or in pictures...especially with my friends cos they have too good arms and compared to my right "bent" 1, it makes it more noticable.
I found these boards a few months ago when i was searchin the net to find out wot the heck Erbs Palsy was. Yes i am uneducated on the subject but now i know and iv told my parents wot it is and im goin to see Dr Birch...I live in Scotland btw so i have to travel to london and i think im gonna be a little bit hyper all the way down there. Sumone told me to b prepared to b nervous for my visit but im actually really excited the 1st then i do when i get up most mornings is check the post for my letter to tell me my appointment date! EEEH maybe 2moro.
Anywayz. I think these boards are interesting but sumtimes make me angry. Well cos all you parents out there talk about wot the doctor says about wots goin to happen to your child and it makes me ded like "WHIT! Thats not wot its like" cos doctors have to go on medical terms but i know it(as well as some others here) as it happens through life (listen to the 16yr old speaking hear about life and iv not even left school yet) lol.
Iv been encouraged to do EVERYTHING! not nessessarily stick to it but iv done lots of things like gymnastics and dancin and karate(too rough) but one thing i have stuck to is...Music. I play the trumpet and the piano and i sing as well. And i want to be an Music Therapist. Rite now im helping an Autistic girl called Leslie by giving her music therapy with the supervision of a music therapist called Brian. Music therapy isnt really that big in Scotland YET! Wait til i become one.
Well anyway im goin to go 4 my dinner now i jst thought id say hi again.

If anyone has ne questions id like to answer them. Cos then i feel helpfull! Email me!

Michelle -x-

I guess we should weigh in...Hello my son Mike is a ten year old with a ltobbpi.... I missed the 20/20 show... oh well I wish there were more.

I might as well get on the TBPI wagon too. I am a 42 year old woman. 2 1/2 years ago, on 11/27/99, I hit a tree on a 4 wheeler. I injured my Right C5, C6, C7, C8 and T1. Glad to finally find others with the same injury. I will tell my story at a later date. I want to get back to reading all the messages boards.

Welcome to the Boards...

Glad you found us... so much information and so many nice people to help...

KathM