Speaking of pain…

The biggest reason for neurontin not to work is that the dose may not have been high enough. Many people need as much as 2400 to even 3200 mg a day. You have to start at a much lower dose because of the sleepiness and build up slowly. The second biggest reason is that people can get side effects from it, but you did not say this, so it might be a possibility to try again.

Lyrica is a new medicine that works like neurontin, but some people tolerate it better. It is kind of expensive, but it is definitely worth a try if one cannot tolerate neurontin or does not get enough benefit from neurontin.

A number of people take Cymbalta for neuropathic pain and this can be beneficial.

Many narcotic pain medicines do not work as well after they are taken for a long time and it sometimes can be of benefit to try an alternative pain medication at least for a while. This is called narcotic rotation. For example, instead of percoset, sustained morphine (MS Contin) or a fentanyl patch might be taken/used. Methadone is also a good very long acting pain medication that is good because it does not have a lot of ups and downs in pain. The disadvantage of methadone is that some people think of it negatively because it has been associated with heroin addiction, but it is a good pain medication. It seems really important to not be always playing catch-up with pain as it is hard to get it under control and so it is better to keep pain under control. The long acting pain medications seem to do this better for chronic persistent pain.

Many people on this site have gone to see pain specialists for optimalization of pain medications. Some experiences are good and some are not so good. The main negative reason is that pain specialists may have a lot of rules about pain medications and what else you need to do. This rubs some people the wrong way, so if you were to see a pain specialist the advice is to keep bringing finding a way to make life more livable and the pain more manageable so that life is more livable (emphasis on function). The other good thing about pain management places is that they can help with non-medication ways to deal with pain.

There are other medications that can help with pain including Elavil and other older “antidepressants” as well as many anti-seizure medications since these act on nerves. The website for the Neuropathy Association has a good listing of other pain medicines used for neuropathy. For some reason this is listed under the topic of types of neuropathies as the last topic “neuropathic pain”.

The neurologist at the Neuropathy support group I attend has said that often people have to take more than one medication for neuropathic pain because the different medications affect different parts of the pain pathway–the perception of pain, the feedback component, and the attenuation of the response.

Personally, I think one of the biggest ways to help my own pain when it is really bad is to lie down for an hour. Fortunately, I have my own office so that I can close the door and rest in the late afternoon or evening. I do not care if I work later if I can do it without so much pain. Keeping my mind busy is also terribly important for me.

I hope that you find a way to not be in agony. That is a terrible thing to feel. WithHope

There have been several posts in the last 6 months on pain control in Main/GBS/CIDP Forums.Use Search in top right corner to enter Pain Control/Medication. Posts will come up to view or manually search older posts.
I’ve been on many different pain meds but only narcotics worked. Currently doing extremely well on Fentanyl patch 100 mg in conjunction with 6 IVIG infusions a month. Your family care doc may not the person to handle your pain. He may be concerned about prescribing anyone strong((er) pain meds because of strict pain prescribing laws now in effect.
I go to a physiatrist/pain management specialist (this isn’t a psychiatrist/different spelling). I’m his first and only CIDP person. Had been to a huge pain clinic but it felt like too big/too impersonal. My current pain doc listens/the small staff knows me too.
Please check older posts for very valuable info/how to handle visits/help insure correct meds given/having doctor understand your problem. If he/she not right for you then try another.
Please fell free to PM me for additional info.

I am surprised your GP is still Rx’ing your 10/325’s. I have been dealing with pain management issues for some time and all other doc’s stopped writing rx’s and referred me to Pain management clinics.

You will develop a tolerance to percoset, and long term constant use can lead to less effectiveness and possibly to addiction. I do use them, but only as a breakthrough coverage, not the main medication.

Analyze your pain, is is neuropathic(nerve related) or muscles/tendons? Does it hurt when you move or sharp stabs just whenever? Nueuorpathic pains are treated with different meds than other pains. The better you can describe your pains, the better the Doc’s can treat them.

Pain is real and it absolutely stinks. There is relief out there. Getting the relief means going through the steps and jumping through the hoops. You give up some privacy (drug tests), but you get relief.

Dick S

Hi Kittispitz,

Okay-I am dieing from the consequences of CIDP, and my doctors are trying to keep me as comfortable as possible.
But I have experience with this, as the years have gone by.

PAIN PROBLEMS
-I used to get severe muscle spasms and contractions. VERY painful.
But, instead of looking at a pain pill, you look at pills to make the spasms
stop. I was first put on Flexeril 10 mg TID, to try to stop the spasms.
I needed a little bit more, so they added valium 2mg TID to go with it.
That worked for a long while, then suddenly they came back worse than
before. So, now I am on Baclofen 10mg TID, (a VERY strong anti-spasm
drug), with valium 6mg TID to go with it. Those combination of drugs
stopped the spasms and contractures, thus no more pain from that.
-I used to get what felt like electric shocks in my spine. I would be lying
in bed, and the “shock” would come on suddenly, and make me jump off
the bed and back. THAT’S when I went on Neurontin, and kept upping the
dose until the shocks would stop.
-I used to get migraine headaches, and have photophobia, (cannot take
light into my eyes, especially from the sun). Well my office of neuros
has a team of about 10 different neuros, each specializing in different
neuro problems. And it is a progressive office, as the often experiment
with different drugs. Well, there is one that specializes in migraines.
And he was experimenting with NSAID’s, (anti-arthritic meds), to fight
the migraines. He told my neuro, and I was put on Indocin 50mg TID,
and that was about 4 or 5 years ago. I have not had ONE migraine since
that time. I still take Indocin to this day, as I would rather take pills,
than deal with those nasty migraines.
-I also had Vicodin, of which they gave me 120 pills per month. Though,
I was getting a little worse with the pain, so they upped it to
Hydrocodone-APAP 7.5-325 tabs, again, 120 pills per month.
-And, because I am on chemotherapy for almost 3 years, the side effects
are getting worse now. It used to be I would only get nausea/no appetite
for a few days, then it became 1 week, then 2 weeks, then 3 weeks,
and now it is the full month in-between chemo doses. In the last 4 months,
I have lost over 40 lbs. I take anti-nausea pills. But, my doctor is now
forcing me to take at least one tab of Marinol daily, (the pill form of
Marijuana), that decreases nausea and increases appetite. It also gets you
high, and you also forget about pain with the feeling of euphoria.
-For arthritic pain, I get cortisone shots in my knees, ankles, and hips,
which help tremendously. And for muscle pains in those areas, I have
Lidoderm patches I put on the muscle areas that hurt.
=======
I hope something I’ve listed might help you out. I am as comfortable as I can be for now.
Ken
(KEDASO)

I use elavil at night. It is an anti-depressant, but it helps me sleep and along side the pain meds and neurotin it seems to help.