United Brachial Plexus Network, Inc.

my pleasure

i have a BPI i think the different kind of pains is because when someone has a BPI they are always in someway different i severed c5 c6 c7 and injured c8 and t1 and my pain in all in my hand nowere else.i get a really sharp thobing pain the all of a sudden gone then as quick as it went it will come back the most pain is in my index finger,middle finger and thumb sometimes the pain is quite mild and other times i am nearl criying and have to lie down which makes me think that circulation may play a part in it because my muscle dosnt work it cant pump the blood so the blood stays in my hand and dosent get pumped around well thats my theory anyway but im open to suggestions i would be glad to hear from someone with my kind of pain kevin

It can actually be difficult to describe my pain. I spend so much time trying to ignore it that writing about it is hard!

My injury is left brachial plexus injury... C5 through T1. Also left thoracic outlet syndrome (TOS).

Pain: base of head going down the back of my neck into the shoulder blade as well as down the front into my chest area. The pain has been sharp... burning, hot. I have what I consider a jolt of pain. Jolt is the only way I can describe it. It is quick and fleeting. Now these "jolts" may continue on and off for days.

In the shoulder area it is more of a dull ache. It is constent. With activity it turns into more of a sharp pain. Pulling the shoulder closer to my body seems to help but I can never seem to get it close enough to stop the ache/pain. I also have what is a tapping. It is like someone sitting there tapping their finger on my shoulder. While this does not sound painful just picture it going on for hours at a time. In the scheme of my pain this is more of an annoyance.

Arm and hand: Sharp, pins and needles, burning. All of those go into the fingers at one time or another.

I have spasms that will actually send a shudder through my left side. My head will lean toward the left shoulder...the left shoulder will rise up... and it feels like I have been hit full force on that side of my body. I have no control over those.

I also feel what I consider pressure on the chest and shoulder blade area. Just feels like I am being crushed.

I am not sure if I descriptive enough about my pain. If not let me know and I will try and explain further.

Joy

P.S. Migraines... I have migraines since my accident they are horrible.

I've read all the replies to these topics and can relate to some of them myself. I have injury at C5 & C6. I have constant pain in my neck and radiating up the back of my head, down my neck, side of my neck into my brachial plexus area, through shoulder and down my arm and ending in my fingers (numbness in ring finger and pinky finger). My pain is constantly on a scale of 1-10, about a 7 and that is with taking mexilatine, and vicadin during the day and 75-100 mg of amptitryptiline and 50 mg of Topamax at night just to get some sleep. When I have spasms or severe attacks of pain where waves of pain take over my entire right side of my body, I have Actiq (oral med that I suck on like a lolly pop.). This works well and within minutes and lasts for about 4-6 hours. I would certainly recommend this med but it is very expensive if you don't have insurance that will cover it. A box of 24 of them are about $220. But if you have severe pain, you'll pay anything for relief...

My pain has worsened since my initial injury in Feb. 02. I have had lidocaine IV treatments in October 02 to help ease the pain levels. It helped somewhat but they've worn off now. I am currently going through physical therapy program with a new doctor and nothing has helped so far. I do have new splits to wear during the day and at night on my right side so they've helped make working and sleeping a little more comfortable. Hope this info helps.

Hi,My name is Geoff.I'm from Sydney,Australia.My injury is the result of a motor bike accident.03 March 02. I consider my self lucky,the only pain is a sharp hot jolt in my right thumb which comes & goes every couple of days.My right shoulder aches but only becomes painful after trying to too much work.10 minutes of lying down fixes that.My hand & wrist is getting better,but my shoulder & elbow does not work.Although there is some movement when exercising in the swimming pool.

Hi Jennyb This is hdcrash I just recently found this website and feel better about the information Iam getting from everyones stories.Alot of the pain people are describing is close to mine.I have the shooting pain from my fingers to my elbow that is constant but gets more severe at times.It feels like pins and needles to me or a tingling pain.My doctor prescribed me to a drug called neurotin which is actually a ceaser medicine that is made for nereve pain.He also said that narcotics dont effect this type of pain.The only downfall is that I have to becareful coming off of it and do it slowly because one of the sideffects is that I could end up having ceasers if weind off to slow.I dont know how well it works still have pain but I dont want to stop taking it for fear of it being worse. Thanks hdcrash

My pain in a nutshelll:
-Constant crushing pain in my hand.
-Pain throughout the arm, comes in "waves" more pain.
-Pain shoulder shooting makes you crazy worst pain don't have it a lot though.
-Had some "good" firing pain when my biceps was recuperating, that pain is peanuts compared described above.
Avulsed roots C5-6-7-8, some T1 was left.

When I first had my TBPI the pain was unbearable. I could only describe it to someone as plunging my hand into a deep fat fryer. Over the years the pain has lessened to the extent that I do not take any pain relief except very occasionally a Paracetamol. I don't know about you Athos, but I feel almost guilty that I am pain free, while others are in pain nearly every day. But I didn't get to this happy state of affairs by accident. I consciously trained my body and my brain to live with the pain, and I gradually beat it. I took the absolute minimum of pain relief drugs in the early stages, and weaned myself off them as quickly as I possibly could. I also trained my mind not to accept phantom pain.

I don't agree that everyone is visiting these message boards to talk about pain. There is something fore everyone here: jokes, anecdotes, a shoulder to cry on, support, information, advice, and friendship.

Pain brings us together, but it is only one part of life as a BPI crip.

No I wouldnt say I feel guilty. More relieved. I mean it's a hassle enough as it is...or better, it was a hassle enough as it was. Now I'm used to it completely and my day-to-day life is almost totally, if not totally, unaffected.

So at the end of the day I WAS LUCKY!!! phew!!!

Sometimes I think of those guys who had their arm amputated, like u Jacko, or who hardly move it, and I say to myself: how would I feel if I were in their position? And how do THEY feel that I got away with it lightly compared to them? To the first question my answer is SHIT. I dont know the answer to the second. Perhaps some of you can tell me, if you want.

The pain in my left shoulder causes my whole left side to kind of curl in a ball I have been told i have a fibrotic band in my neck and the older I get the tighter it gets sometimes when it rains I wish i had a handgun It runs from my neck to my toes since i also have a slipped disc in my back due to my unorthodox lifting style.I ahve been born with this injury and have never seen a doctor for it till recently i have no meds and i am kind of lost in the dark so pain can also be mental which i have a lot of if your kids are bor with this please do something about it don't just hope for it to go away.