Bills pain

Hi Peggy – my neighbor,

The most common medication is Neurontin. There is a generic form available that most take. The oxycontin type of pain meds are not designed to help the kind of nerve pain he is having. I’m sure others will reinforce this and add some other drugs that might help. Good luck!

Nice rain we had this weekend, huh?

Hi: I have had chronic pain in my legs for two years now. I take 2700mg of neurontin daily, 1/2-1 mg of valium to ease spasms and relax the muscles, and I take a pretty strong dose of percocet when I need a break from the pain. Contrary to what others say it works very well for my pain and is the only thing that gives me a break when it gets bad. I have written in other threads about addiction but it is worth repeating-addiction occurs if you must constantly increase the dosage of medication, say from 1-2 pills a day, to 3-4 a day and so on. Then you have a problem. My prescription has remained the same since I started-I can go 2-3 days without using it and then take one or two. So if your brother can stay on a routine with meds there is no problem of addiction. I agree that neurontin is the first drug of choice for nerve pain, but if he needs more there is nothing wrong with oxycodon. Talk to his doctor about her concerns and his needs, but finding a doctor that understands and will support a full pain relief program is essential. The only thing worse than chronic pain is not having support for dealing with it. Good luck, Jeff

peggy,

ditto chrissy. dump the oxycontin. it only constipates anyway. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

gene gbs 8-99
in numbers there is strength

Peggy, I agree that the narcotic pain meds are probably not a good idea; yes you can become addicted. I was first prescribed Vicodin, but when I finally found a neurologist who knew a lot about GBS, he immediately took me off the Vicodin saying it was “the wrong treatment for this syndrome, and (in his opinion) can often times make it worse”… who knew? He switched me to Lyrica which was working OK, but I had to take quite a lot of it to get results. Same was true with Neurontin. Now I take 75mg/day of Amitriptyline for the nerve pain in my feet. That seems to work pretty well for me, plus it is also an antidepressant which many of us can use anyway. Don’t get discouraged, your brother may need to try different things before he finds what works best for him.
Good luck!
Debbie in Miami

Hi Peggy,

Yes narcotics are addicting, but usually not when someone is in severe pain. An example is me, I do not have GBS/CIDP but do have another neurological condition and spinal stenosis, I was on oxycontin for 1 year and one day I went off them and never experienced any withdrawals. They say people in deep need of narcotics do not get addicted.

My husband had GBS/CIDP and was on Neurontin and Darvocet for 6 years,
if he didn’t take that combo he never could have functioned on some level.

Many, many have severe, chronic pain always for years and years, it’s just a nasty thing caused by GBS/CIDP.

HI Peggy,

I’m another GBSer who has good success with narcotic pain relief without addiction. It is true that some people don’t get pain relief with these drugs, but for some of us, they work well.

Neurontin and most other anti-seizure drugs must be taken every day. The level of my pain fluxuates, so I don’t need the same level of pain relief every day, and prefer to take as little medication as I can.

Most of the time, a combination of Effexor and Klonopin works for me. However, when I have break through pain, I add a low dosage of Dilaudid (usually for only 1 or 2 days at a time), and this gets the pain under control again for me. Fortunately, my doctor understands this, and prescribes the drugs accordingly.

Each of us is different and sometimes it requires trial and error to find the right combination. Also, the quality, level, and frequency of pain often changes over the course of time, so the medications may need adjusting.

I hope your brother is able to find something that works for him soon.

Best wishes,

Suzanne

This is a very interesting thread to me. Obviously a lot of us have strong opinions about pain meds. I agree with Suzanne that everyone is different and trial and error is the best way to go. I am not afraid of addiction, but of living a life in constant pain, so I am glad that percocet works so well for me-it is actually a great blessing to find something that break through the deep pain that sometimes assails me. Residual pain is different for all of us and I know a lot of people who don’t have it-I also know a lot for whom pain is a real issue, including one person who took percocet for 12 years and is still on it for all I know. To say it is the wrong medication for the disease is to overlook our individual differences with nerve pain. I hope we all find what works best for us whatever it is. Jeff

Peggy, you have gotten great replies here. Please know that you and your brother are in my prayer thoughts. Hugs to you all 🙂

[QUOTE=gene]peggy,

ditto chrissy. dump the oxycontin. it only constipates anyway. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

gene gbs 8-99
in numbers there is strength[/QUOTE]

If you are in enough pain, and I mean severe pain, I assure you , you will not worry about the addiction and look for anything for pain relief. Oxycontin was a life saver for me for the past 10 years and I will never knock the use of it. I am on nuerontin, 2400 a day and muscle relaxers and about a hundred other meds and the oxycontin is still a life saver for me. I can take as much pain as most, and my DR has said so, so I am not a whimp. Some of you need to walk, if you can, in mine and alot of others shoes for a few days to see what pain really is. Have a good day, because I will with the help of oxy. Well, not a good day, but a servivable day with pain I can endure.