United Brachial Plexus Network, Inc.

Hi, just wanted to warn anyone taking regular meds never to take em on an empty stomach ~ i tried not to but even so after being on high dose codeine several months the stomach pain was as bad as the nerve pain. It has left damage that still restricts my diet over a year since i stopped taking it so remember to always take meds with food even if its just a biscuit or something.
By the way the codeine was effective at first in killing the burning but gradually became ineffective cos of the tolerance build up.

Sara,

My husband is started acupuncture 4 1/2 months after his accident. The practitioner felt he should have started acupunture a lot sooner, the later he left it the longer it will take. Acupunture has really helped with his backache which he is grateful for. We are now 9 months post accident and find a TENS machine helps a lot as well as using a electronic muscle trainer. He needs to stay relatively drug free as being back at work driving heavy machinary needs to be alert. Good luck with it Sara.

my husband mike has lost the use of his right arm in a snowmobile accident in march 2002.he has severe nerve damage and the burning pain accompaning it.he takes 600mll of neurontin 4 times a day.by itself it does no good.the only time he had no pain was when he went yo a pain clinic for a new treatment calledPHOTONICTHERAPY!Basicly it increases blood circulation in the damaged area.there are only a couple of doctors using this, one in pittsburg and one in cape breton canada where i live.our doctor is DR.HARRY POLLETT northside general hospital 520 purves st, northsydney. n.s. b2a 1e3. he says nobody should live in pain in todays world if something can be done.we are continuing treatment hoping it will result. in permanent pain loss

Hi Debi, I was in severe pain due to diabetic neuropathy, my feet burned like "hell". In 1994 the doctor put me on Neurontin, it did not seem to do me any good so he kept increasing the dosage. It was at this time that I started having severe joint and muscle pain. I stayed on it until a few months ago and after going to numerous rheumatologist, orthopaedics, internal medicine, neurologists, I finally went to a neurologist that put me on amtripiline for my burning pain. Since Neurontin had not really done much to aleviate my pain I decided to not take it any more. To my surprise and wonderment, my muscle and joint pain went away and has not come back. I am positive that the joint and muscle pain which was diagnosed as fibromyalgia was a side effect of the Neurontin. I suffered severe msucle and joint pain for 8 years because of Neurontin, I have literally spent thousands of dollars on doctors. Get your husband to a neurologist and ask about amtripiline, I take 50mg at night and I am pain free. No more burning pain and no more muscle and joint pain.

I took ametriptylene for 7 years and it did relieve the burning BPI pain, and helped me sleep. It definitely helped me through the early years.

I decided after that length of time that I couldn't tolerate the side effects anymore.

Be careful if you decide to try this stuff; don't let the doctors tell you it is non-addictive...it took nearly two years to slowly wean myself off this drug; going cold turkey was not an option....I tried.

Take care peeps

Liz B

hi debbie, i was on numerous meds for my BPI, neurontin, amitryptilene, oxycontin, zanaflex, they did nothing for me except drug me up. I have been off everything for about 6 months the pain is the same as when i took them, i take ibuprofen daily and am exploring chiropractic care as an alternative for pain relief. it's been two years and i would like to start a family and try to get on with my life. There is a web site i found today explaining how chiropractic care can help. www.sfchiro.com/shoulder.html. I will give it a shot nothing to lose at this point! good luck.

Hi Deniszea,

I'm on Neurontin,Tegretol and Endep.I still have chronic pain which effects my life.One thing that I'm following up on is research on cannabis based medicines,there are trialls going on in the U.K specifically targeting BPI's.Final results should be in another month.

Hi Debi. I tried Neurontin but it made me incredibly drowsy and dizzy. I wanted to sleep all day. I guess it has different affects on different people though. As for the burning pain, my doctor just recommended capsacian cream. I've only been using it a few days and haven't noticed any improvement yet, though. It's used to treat arthritis but she says it can "de-sensitize" the burning area. It can be bought over-the-counter and you just rub it on the affected area about 3-4 times a day. However, I suggest you ask your doctor about it first before you take my word for it. I hope your husband can find something that helps.

I am so EXCITED to find this board this morning!!!!

The end of October 2002 I had a car accident, of which I remember nothing...except waking up in the hospital and them telling me I was in the hospital. My left arm was numb (among other major injuries). They started me on Neurontin in the hospital for the nerve pain as my hand began to wake up before I came home.

I truly appreciate this pain as it hurts so BAD for days on end, then ceases, and my finger is back to normal but moves on to the next digit. The pain has gone thru all four fingers and is now at my thumb and that part of my hand now going into my arm.

I am now on 3600 mg of Neurontin daily and I don't think it is really working all that much.....but I don't want to quit taking the Neurontin and find out. I also don't want to take a secondary med added to the Neurontin.....what's a girl to do with this horrible pain?

I have OT for movement of this arm (as my fingers now move). My therapist is also working with desensitizing the skin of my hand. I never imagined something so painful before. I would rather birth my sons over and over again compared to this.....ON NEURONTIN!!! I also take Vicodin which doesn't take the pain away but helps me tolerate it better.

Just wanted to add my happiness, pain and Neurontin story here.....thanks for being here!!! Kim

Hi From hdcrash I am also taking neurotin for the pain I am up to 600mg 4 times a day.Also taking amitriptylin 100mg one time a day before bed and ambien 10mg before bed. Sometimes this combination works and sometimes it dosent.Becareful coming off of this medication if he decides to try something else because it is actually a ceaser medicine and it big sideffect is causing ceasers if you come off of it to rapidly.Good luck with finding something that works I know from experince what you he is going thru sometimes it can be unbearable.For some strange reason I find that when the shooting pain starts if I set my elbow on my knee and hold my arm straight up and prop it against my head it seams to ease the pain havent quite figured that one out yet but maybe it can help sometimes.I havent had my surgery yet but hope it works and eases the pain.Also one more thing I dont know if he has had surgery yet or not but my doctor told me that the pain can be a good sign because unfortantley for us the pain sensory nerves are usually the first to regenarate.sorry so long just trying to give good input from my end.