United Brachial Plexus Network, Inc.

I was wondering does anyone else take a nerve pain medicine for the pain associated with BPI? Kayla started taking Cymbalta, the pain in her leg and arm was just to much. She has been taking it for a month now and she can tell a difference, it seems to be working. I hate that she is only 11 and is on pain medicine daily but if it helps her function then I quess she needs it.

Angie

There is also Neurontin (gabapentin) and Lyrica (pregabalin) , the most common 2 for neurogenic pain. As well, many tricyclic antidepressants Imipramine (Tofranil)
Nortriptyline (Pamelor)
Desipramine (Norpramin) are used at low doses for nerve pain.

What your daughter is on is a newer antidepressant and is in a different category, serotonin and norepinephrine reuptake inhibitors (SNRI), Cymbalta is one of these and selective serotonin reuptake inhibitors (SSRI).

I take Neurontin (gabapentin) throughout the day and nortriptyline at night for nerve pain due to my spinal cord injury. It works, not completely as I have much pain, but it sure helps!

Marieke (31, LOBPI)

She tried Neurontin and it didn't help. I know Cymbalta is also used as antidepressent but it also is used for nerve pain. So you are taking two different kinds? Is it because the Neurontin just doesn't help enough so you can sleep without pain?

Angie

Yeah, I take both at night b/c the neurontin just doesn't always cut it. I also have Lyrica on hand for in the middle of the night pain that sometimes wakes me up... Lyrica is often more successful than Neurontin, works better at lower doses, so fewer if any side effects.
Marieke

angie.

my name is tess gavagan. i am 13 and have a bpi. i get a pain in my right arm from the injury. my doctors can't figure it out. We drove all the way from the Baltimore maryland area to philli to see a doctor. they gave me one of those medications above, that helped some. even though it was a very high dose it didnt fully get rid of the pain. They also gave me a peice of material that is the same as a wet suit. they cut it and put something on so i can keep it on tight so it keeps pressure on the spot that had the pain. It really seemed to help me alot. also if you put around a one centemeter gell pad of some sort like i did it gives more pressure.Hope that helps if you try it!(i kept this on all 24 hours of the day. added as much pressure as i could along with my medication that seemed to be helping most of the pain out)

-Tess Gavagan

Tess,

Thank you for the idea, I will have to try it with her the next time she is complaining. Right now the medicine seems to be working but I know as soon as it gets cold she will start having some pain again.

Angie

Hi, my name is Scott from Texas.
I take 1300mg of Gabapetin 3 times a day. In addition I take 50mg of Methadone 2 times a day, 5mg Hydrocodone 4 times a day 30mg Soma(Carisoprodal) 2 times a day, Omeprazole each morning and 100mg Amitryptylne with 45mg Temazepam each nite for sleep. It certainly sounds like a lot and of course it is. I still can't stop the burning/crushing hand. Honestly it brings me to tears daily when I'm alone. So that's quite often unfortunately.
Scott

Hi Angie,

I used to feel bad that I was taking pain medication daily, and tried to quit a couple of times. Both times I was in excruciating pain, and regretted even trying.

Luckily, after 9-10 years the pain finally died down. Now I still have plenty of meds on hand for when it acts up, but most days I don't need anything.

The important thing is that the stress of pain can do a lot more damage than the meds (when they're properly balanced).

Your child is very lucky to have found something that helps, as the drugs don't work on everyone. Good job finding something that helps her!

Heddi

i take gabapentin 3 times a day and percocet like every 6 hours or if the pain is ba every 4 hours i also take tramadol every 6 hours.this regimen don't take all of the pain away but it makes it tolerable.i ran out of gabapentin one weekend and thought i was gonna die it was terrible pain.but i live with it and hopefully one day they will come up with a regimen for me that takes it all away.good luck.
daniel

So far we have been lucky and have not had to give Matthew anything for pain. I do treat him with some herbs, not sure if that helps or not but I do keep a product called Brain & Nerve tonic on hand just in case some pain hits, I've read about too many kids on in so much pain I wanted to have something on hand just in case. It's an herbal alternative - all natural.

Angie - is the pain in her leg from a surgery scar? Matthew complained of his leg hurting a few years ago, the scars faded a bit and he hasn't complained much since.
Some times he complains his leg hurts when we walk for a while - but I'm not sure if it's just him being lazy or it actually hurts.
Cindy