United Brachial Plexus Network

Liz & I are working on something at the moment and altho I have a lot of descriptions of the nerve pain (as against the muscle/joint pain) from the tbpiuk site, I couldn't find that many here. We will be using the descriptions as anonymous quotes. Thanks in advance :0) If you don't have pain that would be interesting too......

Hi guys

Here goes. My pain is mostly in my lower arm and hand. once in a while I'll get shooting pains from the hand up the arm. In my hand It feels like a crushing burning pain. Mostly in my pinkie and ring finger fading from the most intense on that side of the hand to virtually no pain in the thumb area. It is much sharper and attention getting than aching type pain in my shoulders from broken bones. The pain in my hand feels like i slammed it in a car door and left it in there. Luckily 3 years post injury most days are tolerable. I do not regularly take any drugs. It do take vitamins like B and DLPA. And I have a stockpile of percoset that I rarely use but sometimes I just need a break. Oh ya I've tried smoking those funny cigerettes but its a bitch trying to roll them. The pain relief is probably the most effective from it but kinda hard to live life stoned all the time. Hope this helps Jen. We appreciate all you and Jen do. I dont post often but i stop by here and the tpbi site to read regurlarly.

John/pushrod243

With my right arm, I have pain that starts in my neck and goes down to the fingertips. It feels like someone whacked your funny bone -an odd feeling- but it is the full length of my arm and never stops. Then I have hot,searing pain that's mostly in the upper quadrant of my shoulder and arm. Then I have throbbing, aching,like someone punched you and you have a big bruise, pain in my biceps - deltoids. How I posture my neck and shoulders makes a huge difference in the level of sharp pain so I am planning on seeing an Alexander technique therapist to work on my posture.

My left arm is different. It is more cold, numb and has buzzing like noise that is SO loud I sometimes can't hear myself think. The pain is more of a cold achiness. It is much more chronic whereas the right arm is much more acute.

Hi,

I guess I'm one of the very few in no pain at all. OK, when I do ROM exercizes to the shoulder I feel the nasty pain of nerves stretching a little. But as soon as I finish my exercizes the pain goes away.

My BPI specialist asked me the last time we met if I was in pain, when I replied I was not he justified it by saying that I had been injured lower down (posterior chord) away from the spine. Had I been injured closer to the spine, I would have been in pain.

Judging by how much people complain of pain, I can count myself very lucky. I was interested to know if there were others in no pain like me. If there are, I would be glad to hear from you.

Athos

Hi,

I have burning pain on the inside of my right arm starting at my armpit down to my wrist. At times it feels like it's in a deep frier. Also it is super sensitive to touch. The wind or someone brushing up against me drives me crazy. I also have random shooting pains from my collar bone area down through my hand. It's usually not that bad, but from time to time I swear my flesh is ripping open. Also the tip of my elbow is completely numb and my pinky feels like it has glass in it.

I guess people with no pain don't bother to talk about it.

that's true athos, i think it's the intractable pain that brings many peeps here rather than the non working arm-the arm itself is no big deal to me but the pain is, if i'd been pain free i would probably never have typed 'brachial plexus injury' into my browser and come here at all. It's the one aspect of tbpi that many doctors just don't seem to understand, visit any medical website and the pain gets just a passing mention when for most of us it's the major issue in dealing with a tbpi. I never heard Hazel complain about living life with just one working arm, yet look what the pain did to her. It was that which has fired us up to gather relevant info about it other than just the medical/surgical 'answers' many docs provide. Most of us anecdotally learn to live with it and have strategies when we get a bad pain attack and the long term surveys carried out bear out what we hear from one another, the pain DOES stop being constant after a couple of years in most cases and continuing spasms are found almost exclusively in peeps with total avulsions. When I read about potentially dangerous or unproven surgical solutions offered to relatively new injured people, or the pain not being taken seriously or addressed at all in other cases I have real concerns about how the pain is viewed by the medical community, and their general level of ignorance regarding tbpi pain.

RIGHT ON!!!!!

That totally describes it to the best of my knowledge. I have witnessed it first hand.

Mom of a TBPI

Nancy (Eric's Mom)

jenny, I agree with everything you say. I'm happy that for you the non-working arm aspect was no big deal. For me it was a big deal, and I have been working very hard in the last nearly 3 years to get as much movement out of my injured arm as possible. I'm still at it now, and I expect to be for a while to come yet. In fact for me I would say it was a very big deal in the beginning when my arm was completely flail. Now, in fact, I even get satisfaction from my arm as it works much better, and I look back at all the progress I've made. Never thought at the beginning that I'd get satisfaction from a flail arm. But now that's what's happening as the arm responds more and more. I guess I'm lucky because not only has my pain been moderate at worst in the beginning, but also because my injury clearly was not as severe as other people's.

But you are right, if you are in severe pain then that is definitely worse than "just" a flail arm, because from what I hear the pain can be absolutely awful, and in the most severe cases, we have seen, one may not even be able to cope with it, unfortunately.

yes, maybe if my pain at the beginning had been less severe and my avulsions not so many, i would have been more bothered by the flail arm and spent more time seeking repair options, as it is the pain is now manageable and infrequent and i'm totally adapted to one armed life-so I always think of myself as a bpi success story despite not having the use of righty. If my pain had been less I'd probably have worried more about my arm. I'm not saying I was ok about it at the beginning, I was in total despair for a few months, but life goes on and as it became clearer over time my injury was permanent, I found I just automatically got on with my life, I think most of us do in the long term, irrespective of recovery-PROVIDED the pain is bearable. Altho we all have the same injury it's really interesting how hugely different our experiences are. I get a real kick out of following the progress of those who get some recovery, whether surgically or otherwise, you've been great at sharing your progress with us as it goes along athos. Thanks for doing that :0)