United Brachial Plexus Network, Inc.

Hi, my name is Angela and I usually post on the General Message Board. I am the mother of 3 in college, with the youngest born severe LOBPI.

I just read some of the PAIN posts and am overcome with extreme sadness. My oldest brother at age 53, on August 14, 1995 committed suicide, because of his extreme pain. His note said "I Love You All".

He did not have traumatic BPI. He did suffer all his life with tremendous back pain, but never had back surgery. However, it wasn't until an emergency surgery on his chest in 1990 that the already severe pain surfaced in another area. My brother owned a business along with his wife, his children grew up with it, as did mine with my business.

I so hope all of you find the support and help here that he never did. The pain clinics used acid to try to kill off nerves in his torso, near his surgery site and it didn't work. They said they could try it again and my brother said the pain from the acid treatment was intolerable, and he wouldn't do it again.

I will never forget on a very early morning in March 1995, he called me. He wanted me to know about an auction of Construction Equipment, that he thought I would want to go to. We spoke for some time before I got brave enough to ask "Albert, your speech is so slurred, what is wrong?" His reply was, "Oh, you never talk to me this early in the morning. When you call me at the Bicycle Shop it is always later, and my pain medicine has had some time to wear off by then". Five months later he was dead.

My daughters spoke of him and said, "Mom, whenever we got together he was always sleeping any time he sat down. We didn't get to know him very well." SAD

My parents were both frequently sick with numerous real medical issues, by dad had back fusion surgery himself, and my mother had each eye operated on twice. Amoungst many other things, Both of my parents died of Cancer. My oldest brother was the caretaker, he being 11 years older, when he left I became the caretaker. I have/had 4 brothers, and Albert was the only one that would come back and help me, when I was so young and needed help. I miss him. PLEASE DON'T DO WHAT MY BROTHER DID.

Angela, I am so sorry to hear about your loss. I can't begin to imagine the pain that your brother must have been in to take such a desparate act. I am also sorry that reading the pain posts and articles might have brought back such bad memories for you. One of the main reasons why I am always very hesitant to post about pain, or point anyone to any articles or information about it, is the fear of causing this kind of grief.

Nevertheless, it NEEDS to be talked about and recognised for the deep and profound effect it has on countless numbers of peoples lives. By coming to places like this and sharing our experiences of how each of us deal with pain, we educate ourselves and make better informed judgements about what might work for each of us, and at the very least, we can all gain some comfort from the fact that we are not alone..someone else can relate and know how we feel.

Over the years, I have found that unfortunately, there is a lot of basic misunderstanding amongst the medical professions in general about chronic pain and how to treat it, particularly neurological pain as caused by a TBPI. If anyone feels that their GP or primary doctor isn't treating their pain seriously, or helping them to manage it to a tolerable level, then they should INSIST that they are referred to a pain specialist for proper assessment and treatment plan. This may or may not involve the help of a clinical psycologist.
Multidisciplinary pain centers that offer specialists, counseling and support are becoming more common, but they are very few and far between.

There are now fortunately many support and information websites out there; here are a few that are useful and where more help is available:

-- Worldwide Congress on Pain, sponsored by the Dannemiller Memorial Educational Foundation, offers a comprehensive list of Web sites, phone numbers and addresses at www.pain.com. The Web site also includes online physician Q&As and lists of specialists by location.

-- American Society for Action on Pain, or ASAP, http://www.druglibrary.org/schaffer/asap/ offers support, advocacy and referrals. Skip Baker, president, This site has a 'panic button'(757) 229-1840.

-- American Chronic Pain Association in Rocklin (Placer County), Calif., at (916) 632-0922, or www.theacpa.org, has local chapters nationwide.

-- National Chronic Pain Outreach Association offers information and outreach, (540) 862-9437.

Hope these are useful...once again, apologies if anything I posted has caused anyone any grief.

Lizzy B

Hi Lizzy

I have read the pain topics before, but for some reason today. I think it was when someone really found a fairly successful solution. I was happy for that person, but sad that it wasn't found for my brother. It certainly wasn't anything you said.

The funny thing is a friend was coming today to take me out to lunch. Immediately after I wrote about my brother, she was knocking at my door. She was bearing a belated birthday gift, and of all things it was a candle made in the same city my brother had just moved his business to, having previously owned it for 20 years in a neighboring bigger city. I coulnd't believe, all in the same few minutes. The candle was from the same city, the address only being a couple of blocks over, from his last business address. There was even a map of the area, post card size that came along in the box with the candle, and the City where my brother lived (his widow still does) was also listed. I think it was just too coincindental. I think my brother wanted to send me a message. Candle....light...hope.

I must admit, this is all too strange. My friend couldn't understand why I didn't say more about the candle and instead could only talk about my brother and the candle, from the same town....she said "you must be thinking about him". I didn't have time to put it all together, and we left my house for lunch out. We talked of me helping her start a business, since I had done it before. Now that she has left and I read your post, it is all fitting together. CRAZY

This is an issue that's come up over and over since I found UBPN-whether to be 'up front' about the levels of pain we experience and honest about the effect it can have. It is very easy to scare and depress people who are in the early stages of the injury and might end up thinking they too will still have intolerable pain decades later-most of us do still have pain but it's not intolerable for most and if surgery or natural recovery means nerve repair takes place the pain is usually much less. Long term visitors to this message board will remember that one of the tbpi here did take her own life due to the pain and it has been documented as happening among patients being followed up long term by tbpi specialists. I think it's important that people do realise it can get that bad and that they should seek out the right kind of specialised help as soon as they can.

I agree with Jenny..we lost a good friend and I have to stress here that this lady did have other problems which turned out to be far more severe than anyone thought, and magnified the intensity of her pain by a huge amount. She did suffer from more that what we would call 'normal' BPI pain.

Part of our ways of dealing with pain is to not mention it...either to our carers, close family or the doctors. It's the way anyone and everyone who is in pain copes; everyone knows that as soon as you mention the 'p' word, all hell can break loose, BUT when the pain is so severe or flares up suddenly, then we SHOULD talk about it, even if it's just to each other.

Specialised support and help should always be sought if things get really bad, other than that, the pain without a doubt in most cases DOES get better and easily tolerable as time passes, usually (in our experience)around 2 years after injury. Some people reach that level much earlier. We need to remember that we are in charge of our lives, the pain ISN'T and the aim is to get the pain down to as tolerable a level as possible. This is what the experienced staff and doctors in a specialised pain clinic will do, either by tried and tested drugs or possible surgery. At the very least they should listen to your concerns and work WITH you to improve your life.

Anyone who is close to someone with a TBPI should always try to remember that too much of the wrong kind of sympathy can have a very bad effect, and every carer or close family member has to take this fact on board...it's a hard call, but sometimes you have to appear to be cruel by gently encouraging someone who is in pain to try and do something that will take the focus off it...not run around and wait on them hand and foot, but encourage them to take more exercise, go for a walk, shopping (my personal favourite! ;0))take up a new hobby, go back to school, work or anything that will fill the mind with anything other than pain. How those who are the nearest and dearest to us react to us and our pain is very important, and can make a lot of difference in the way each of us copes.

I hope I haven't upset anyone by this post...I know everyone does their best for their loved ones.

Lizzy B

Hi Lizzie (an all)
Thank you for your post. Yes, it is difficult to keep it all to yourself when you are in pain, but we also don't want to appear as "whiners".... But it does bother me when some people think (or imply) that it is all in your mind and all you need to do is stay busy....it makes you feel ridiculous......so you just keep it quiet and suffer in silence......
I just hope it goes away - it has been two years and I'm going to have a spinal cord stimulator implanted next month......
I f I knew it would go away eventually I could hang in there, but I'm sooooooo tired to this continuous pain and I am beginning to see that I am spending more and more time alone.....it's not good....
Thanks

Sometimes I worry about how I might come across to some-one who's new to this injury when I'm throwing a fit in a post....and I wonder if there might be something going on with my particular injury that's "adding to" the problem. Without going into too much detail, I should be dead by now. I lived alone for most of the first 4-5 years after this and I swear if some one had seen me back then I would have been commited to a psyc ward. I wanted OUT.I wanted the pain gone so badly that I would do anything. It became a game. A race to either drink myself unconcious or...whichever came first. It hurt a lot.
It still does, but I've found that there is help out there. Limited--but there. And I found out that I can hold on long enough to see "the Man" (knock wood)--who ever he may be-- Dr. Belzberg I hope.
And if it takes morphine, or oxycontin, or in my case methadone, to knock this pain back and keep me functional, then I have to get it, and take it--use it to get me where I have to go to get surgical intervention to make this in any way better. ANY way. I will gladly go thru the depths of HELL to knock it back 10%. That's how bad my case is. And then there's the final solution.The ultimate contingency plan. When there is no hope left what so ever.....And THAT is what I mean when I say that methadone saved my life. Because no matter what, as long as there's methadone I can survive this, and even be somewhat functional. OK--Enough already--------------Ronin