United Brachial Plexus Network, Inc.

My question is, how much of this pain is "real" pain? And how much is perceived pain? In the hospital I was whacked on morphine, literally. After my hip was repaired with drywall screws and plumbers tape, they gave me this little machine so I could inject myself with morphine. Then they took it away, but they gave me vicadin and neurontin. I got off the vicadin, but my body and mind have not been without neurontin since two weeks post bpi.
It's been 15 months. When I get too busy and I forget to take it, I seem to be fine till I notice it. Then I suffer for a long while even after I take the neurontin. I think if I had some time away from work, maybe I could "dry out". Anybody else have similar experiences with pain meds?
I also want to wish Sue good luck. As a wise philosopher once said, "Go get'em tiger".

I can't remember the extent of your injury or nature of surgery... i.e., if you're at the point that repaired or replaced nerves are slowly regenerating or if that's an option for you.

John had all five avulsed & at the peak, was on daily doses of 3600 mg Neurontin, 200 Topomax & 100 Amitriptyline. He worked over the summer & was able to stop the Amitrip completely & reduce the Neurontin by half... so he's now at 1800 Neurontin (600 3x) and 200 Topomax (100 2x). Coupled with the pain meds are some indicators of nerve regrowth from Feb & Apr surgery (can move elbow pretty well across a table & slightly move fingers) - which should help the brain back off on sending those signals. John feels the degree of pain reduction he's found is also due to better coping skills in general as well as keeping busy.

Of course, every case is somewhat different - but maybe this helps. John uses a pain doctor & if you don't have one, you should look into it.

Bottom line, I expect "real" nerve pain is best addressed by:
- pain medicine
- nerve regrowth (if possible)
- staying busy
- better coping skills (reduced stress, sleep, etc.)

I'd think perceived pain would be primarily helped by the last two on above list. I'm interested in what others think...

Hang in there,

Ellen

Pain is always real, but it's subject to perception, too. To explain what I mean-a broken leg would hurt, I'm sure most people would agree. But, if you were attacked by a tiger when you had a broken leg, you might forget that pain and even be able to get up and run away-but that wouldn't mean that therefore the pain you felt when NOT being attacked by the tiger wasn't real. The pain of an injury you are aware is about to happen is more than the pain of the same injury happening with no warning. When vets do nasty painful things to horses, they often apply a 'twitch', which involves string being tied round the horses upper lip and twisted, which distracts the horse from noticing what the vet is doing that might actually hurt more, and it works really well. Various nerve signals and brain chemicals are associated with pain, and really, ALL pain is in the mind because that's where it is registered, irrespective of where on the body the site of injury is.
There are various theories as to what causes the continuing pain in tbpi when to all intents and purposes the original injury is healed. The worst and most long term pain seems to be in cases of avulsion, especially C7,C8 and T1 and especially in people with no sensation or feeling in their hand. It seems the pain wiring circuit gets affected and may affect the perception of pain or interpretation of signals from the damaged nerve/s. Whatever the cause is, if you're feeling pain, it's real and needs dealing with. The fact that pain can be dealt with simply by keeping busy doesn't mean it is not 'real' pain, most pain can be dealt with this way, it takes practice but it's possible. I know someone who refused treatment that may have helped her because she felt that by focussing on non medical means to get through the pain, the team that were treating her were implying her pain was not real. Some of the posters on the tbpi uk site have trained themselves to overcome their long term pain by various mental methods with great success, and I did it during childbirth, I had no pain relief with any of mine (ok I lie, gas and air with the last one coz I felt I'd missed out :0). If anyone suggested I was able to do this because I did not have a painful labour, I might need to become Punchy Jen.....:0) ALL PAIN IS REAL!

Hi Ellen,
To answer some of your questions regarding my injury, I posted a reply on the thread "Air Dates for Discovery Channel". I don't know about the nerve regrowth. But I think your right about the better coping skills and keeping busy.
Hi Jenny,
I guess I was just hoping that the pain was in my head to some extent. When I'm in the gym on the exercycle, I play the pain in my arm against the pain in my legs. When my legs start to hurt, I start ROM on my arm and hand. It cancels out alot of the leg pain. Then if my arm starts to ache, I crank on the legs harder to cancel the arm pain.
The execise really seems to help over all, it just took me so long to reach a point that I could start doing it. I highly recommend it. Anyone else?

I just want to agree with Jenny -- all pain is real...

I am OBPI when I complained as a child of pain the doctors believed that Erbs Palsy had no pain... duh... they decided that children who complained of pain were trying to get attention... needless to say you just learned not to say anything about pain anymore...

But
Pain denied still exists! I knew I had pain...

Don't forget to take care of the unaffected arms... be nice to them and don't overdue.... I have worn my out... because I thought it was so strong...
KathM

Ops! excuse me...
Unaffected arm... I meant to say --- I have worn mine ---- not my---out.

Kathm

Pain...perceived or real....someone once said that "perception is all, regardless of the truth..." and I have often pondered on this in regard to the neuropathic pain we all feel with a TBPI.

Jen and I have been studying this and other aspects of TBPI for years, and we are still learning about it, mainly from the experiences of others plus our observations about ourselves. Over these past few years of talking to people about their TBPI pain, and how to cope with it, a pattern has slowly begun to emerge. This pattern indicates a kind of natural path toward coping,managing and living a very full and drug free life regardless of pain and everything associated with it (lack of sleep etc).

When first injured, people will usually take any pain relief drug that is offered, or ask for others that they have heard about, and use these simply to get thru those first scary weeks and months. There is a real need for this for most people, and is perfectly normal and understandable. Others stop taking these drugs almost immediately finding that the side effects are intolerable or they simply don't go anywhere near stopping the pain. One thing that has become clear in our research and experience is that almost everyone who has given up the drugs said the pain levels went way down. Of course, there are exceptions to this, but very few that we know about. Jen and I have done several articles about this which people on here already know about. We are still on this particular learning curve. ;0)

One thing that seems to be left out of the equation is the FEAR of pain, and I personally believe that this fear can play a very big part in the way we all cope with the pain. Other factors are belief and trust; belief and trust that the pain relief drugs should cure the pain 100% . At first the fear is very real, and completely normal...it's one reason why we take the drugs in the first place; taking drugs at a regular time restores some of the order in your life, and this helps to combat the fear of the pain becoming worse.

We also believe and trust that they will work in curing the pain, until the day when we forget to take them at the regular time, and discover that the pain didn't in fact get worse.

When this happens, the fear that not taking the drugs will worsen the pain is suddenly questionable, along with the belief that the drugs will 'cure' the pain. It can be a life changing moment, in fact, some people have said that from then on, the pain levels finally started to reduce.

It's about control; controlling your fear of the pain, and switching from believing in the drugs to trusting and believing in your own strength of will, and not allowing the pain to take over your life. I suppose its what they called psycological dependency on the drugs; fear of not taking them, and if people could get over this, then I personally believe the battle would be half over, and our individual perception of our pain would change completely.

Just to totally agree with Jen; ALL pain is real. How we deal with it can change our PERCEPTION of it....

Liz B

PS Sorry, I seem to have gone off the topic there...sorry peeps!! :0)