United Brachial Plexus Network, Inc.

I was thinking about pain today and the question Dr.s always ask--"what is it like?" "describe it" Well I think the best way to describe a full blown pain episode is that it's like being on fire.Not just the physical sensation but the whole adrenal 'fight or flight' response kicking in and your instinct telling you to RUN from it and MAKE IT STOP but your reason - the part of us that controls our animal responses or instincts- saying "there ain't no where to go". Then the reactive depression says in a real small voice "there is one place you can go"--- I used to say that I could tell the difference between a Smith&Wesson and a Ruger by the way the barrels taste...I used to think that was funny......."If I was a dog, they'd shoot me".... I really don't want to die--but I am so DAMN sick of living.

I understand exactly what you mean, and I am so sorry you are suffering this way. On some of my worst episodes,(usually at night b/c it was very hard to distract myself from the pain and I was so tired my defenses were much lower), my husband would watch helplessly as I would rock back and forth in agony crying (and this from a woman who had 3 kids all over 8lbs completely w/o pain meds and once cracked my ribs, punctured my lung, and bruised my spleen in a horse fall, only to get right back on and finish my ride), and we would both think, if I were a horse, they would shoot me in a hearbeat. No one would let an animal suffer that way...yet here we all are.

The one thing I will say is that experimenting with several dif things and finding the combo that works best and then adjusting it often works the best, along w/ ANYTHING that distracts and takes the mind off the pain. Keep busy, and also try to do things that will raise your natural serotonin(body's natural pain reliever) levels. Stress, lack of exercise, and lack of sleep will lower the levels...so try to counter-act those and also certain foods and vitamins etc can raise the levels along w/ accupuncture etc.

We really do feel your pain here....b/c we have the same probs. Our heart goes out to you.

I am sorry to read this, and we all know what you are going through. I emailed you seperatly. Good luck!
Courtney

ronin,

You have GOT to keep fighting. Everything Gretchen said is true. I find that high stress levels and little sleep do make pain much much worse for me. I exercise a lot and that has always been a big help. Yes, yes it does hurt more than anything, more than anything I can say on this message-board, but you still have to keep the faith. We are ALL with you here. You still want to live, trust me.

John

Hi Ronin...I don't know what to say to you that will make things any better...I hope anything I do say won't come out wrong; I am scared of making things worse for you. You and I have had this m.f. injury for about the same time I think (ten years) and been thru a lot with the pain, the drugs, more pain and even more drugs.

I can't STAND it when the drs ask us to describe
it...how can you describe the undescribable? and I kind of agree with your 'fight or flight' response idea, but I just can't agree with you on the 'ain't nowhere to go' bit...this just isn't true mate.

The 'other place to go' is not an option either. Tell that reactive voice of depression to **** off and get
pro-active instead. Don't let the pain, or the drugs you are taking for it rule your life, ...I have spoken to dozens of people with this injury face to face and upwards of 100 via email er whatever and the people who have managed the pain best, even to the point of having totally pain free days are those that take very small amounts of drugs or nothing for the pain, and keep busy and distracted. So, giving up the so called painkillers slowly can help, a lot. It takes a lot of guts and determination to do this, but with the right support from professional counsellors, friends and most importantly, family, it can be done.

This isn't b.s. it's a fact...I hope this post doesn't come across as being unsympathetic; thats the last thing I want this to be, I just want you to know that I do really know how you feel, and there is a way out other than what you said. Pain CAN be kept under control, it doesn't have to control you, you have FAR more important things to do, places to see and maybe bikes to ride in the sun...remember, it's not the LIVING you are sick of, it's the pain, and although sometimes it feels like it takes up all your life, in reality, it doesn't...it's just another part of it.

Email me anytime you like mate; if you wanna chat sometime I'll give you my I.M. name...take care

Lizzy B x

Some inspirational replies here-null, I totally agree about childbirth-I got my injury years b4 I had a baby, and when labour was in full swing it suddenly dawned on me that this was the closest i'd ever had to the bpi pain-only not as bad!

Liz is so right, Ronin-I too weaned myself off painkillers as soon as I could and found that the pain decreased. It NEVER goes away, and sometimes flareups can be savage, but it's tolerable, especially with some herbal help. It does seem that those who reduce or stop the prescription drugs end up with less pain, it does sound insane but it's true of the people I have talked to. We are all different, what works for one doesn't necessarily work for another, but we can learn a lot from each other. Living is great, pain isn't. We are all here to help, you can mail me anytime by clicking on my name. Keep busy and occupied, take as much exercise as you can handle and stay in touch.
Take care Jen NZ

Been there, as have most of us. It's been 22 years and have had bad spells, worse spells, and the really bad spells. And in the deep hole that the constant pain, lack of sleep, and emotional weariness digs, the thought of ending it has flitted across my brain. Meds don't work and nothing will.

But, and you know there is a 'but,'I haven't carved out a life in the middle of all this BS to quit now. It's the beast I live with, and somedays I get the beast and somedays the beast gets me, but everyday I fight the bastard (sorry, but *&^% won't do). And you know what, it does get easier. This board helps a lot, and the pain management techniques learned over the years help me through the realy bad spells.

I can't make it better for you, but I can ask you not to let the burn win. Talk to us, offline or on, and hang on.

My dad says the exact same things that you say and I have no idea of the physical pain you are going through but I see my dad go through it and it's horrific. He was in an accident in March and it's ruined his life so far. He's in pain all the time and no medication seems to help. I feel for you I hope someone finds some kind of a solution to these types of injuries. I think it's because it isn't very common people need to be aware, these injuries are enough to drive someone mad and it's taking a toll on everyone in the family, we just feel so helpless, well we are! If I could trade places with my dad for just a day a week to relieve him from this pain even though I see what he goes through and I know it would be excruciating I still would, for a day a week, so my dad wouldn't feel pain.

Hi ronin my name is Todd and i have been going through this for a year and a half.The best way i found to help is going to the gym and to set in a hot tub,the hot water and the jets help me alot.the pain is very hard to deal with but you can do it.It's very hard for all of us just hang in there.
Take Care Todd
P.S. Your not alone

Ronin,
Check this page out too! It might be of some help!
http://tbpiukgroup.homestead.com/centralpainbpi.html
Courtney