Neurontin anyone?
 

I am new here and I know it is rude to start right in with questions but I was wondering is anyone has tried this for the constaint pain? The main site of my RSD (I do not know if that is the right terminology) is in my foot cause by having my old boss drop a 500 pound cabinet on my foot while we were moving offices. I also have muscle spasms all over my body as well as other issues.
I had a physical with my GP and while he does not know much about the RSD (I am the first time he had ever heard of it) he thinks the neurontin may help with the constaint pain. After 3 years, I really don't want to get my hopes up again but for the last 6 hours all I can do is daydream about returning to a life that I enjoy. I would rather dash the hopes now and be pleasently supprised later if it works than get all excited and then get knocked down again.
Thanks in advance.
D

Hi. Welcome to the board though I am sorry about your pain. This is my 2nd time on neurontin over the past 3 years. The first time I quit with the side effects but this time I pushed through them and after a short time the side effects passed. I am still working up to the right dose but am on 2700. I am still in a lot of pain but it has helped to a degree. My experiences with GP have not been very good around the RSD and why it is important to see a pain doctor who deals with RSD for proper treatment. Who DX with your RSD? I have been in constant pain for 3 years too it just varies of how extreme. What makes you not want to try it and at least see? Even if it brought the pain down a notch and then in combo with another med or treatment. That is my thoughts. I would also see someone who deals with RSD. Hope you feel better

Hi welcome :)
 

I am sorry to hear of your pain. Many people will be able to help you and offer support on these boards (I am new too). I was on Neurontin for a while but the side effects for me were too bad. I tried many meds and the only one that has helped me at all is Oxycontin, but different meds work in different ways for different people.
I hope it can offer you some relief, I believe it has helped many sufferers, it is just a case of finding what works best for you. I also find Clonazepam helps with my muscle tremors and interestingly my balance.

Take care and stay strong
Jo :grouphug:

Hello D, and welcome!!

I've had RSD since '83. And, I was a "test dummie" for lots of things and doctors.
For the past 20 years, I've settled on Methadone, (No real side effects, except constipation, it can slow your breathing if you're not healthy in that area, or take too much) and, it's very inexpensive. There is no "Buzz".
I also take Valium, and a muscle relaxer at bedtime.

(I have other injuries, that I take other things for, but won't get into that.)

I hope you can find a good neurologist, call a University Hospital, and find out if their neurology dept. is familiar with RSD. They should be.

I know quite a few folks who take, or have taken neurontin. They have all put on weight. Lots of weight, with the higher doses is the complaint I hear the most.

Hope that helps, and hope you get some relief.. Keep moving. RSD is a monster.

Btw, check out rsdsa.org

Pete
asb

Hi! I have been on neurotin for a little over a year. I take 2400mg per day. It helped to begin with some. I still have lots of pain. I don't really tell much difference any more. When I got my SCS they told me I could ween off it. In doing so I felt no more pain than before. I am back at it again and really don't feel a difference. I feel its always worth a try to see if it helps. If it don't you can drop it. My pain managment doctor provides my RSD care. My GP doc doesn't know much about it. Hope this helps.

Hello,

I have been on neurontin for 4 years. I see a difference if I push past the time that I need to take it - my pain increases. I take 2700mg per day, have a SCS and work full-time. I also take other medications to help with the spasms, etc.

The trick is to stick with it for atleast a month when you try it. The side effects usually subside. Remember that everyone is individual with what medications they can take and what helps.

Good luck.

I started taking gabapentin (neurontin) after I had RSD for a couple years and it worked remarkably well. The first several days I was extremely sleepy but this went away by about the fifth day. It simply eliminated my pain almost altogether. It didn't help the other symptom a great deal and didn't give me back use of my hand but it made it much easier to avoid the triggers and avoid most of the pain.

I weaned myself off of it over a year and my condition gradually improved for a while until I had another major setback. The second time the gabapentin was less effective and I've had to increase the dosage quite a bit.

Good luck.

Neurontin anyone?
 

I am sorry to learn you have been diagnosed with RSD. Neurontin is an excellent drug for RSD, often one of multiple drugs that patients will use to manage their pain. I have been taking 3000 MG of Neurontin daily for 7 years as one of five medications in what my specialist refers to as my "cocktail". You mentioned that you are being treated by a GP and that you are his first RSD patient. You are fortunate that he has diagnosed your RSD. Because RSD is a complex disease and the pain is difficult to manage, you may want to also consult with a pain management specialist or neurologist with expertise in RSD who is able to offer the broad spectrum of treatment you may require, such as complex medications, pain blocks, spinal cord stimulators, and physical therapy. It is acknowledged that the window of treatment in the first six months of onset of RSD is critical. You have an opportunity now to obtain aggressive treatment that will impact your long-term outcome. The RSD Association and their web site provide a tremendous resource for newly diagnosed patients, in addition to the helpful people you will meet here. I cannot encourage you enough to find the top specialist in your area as soon as possible. There is great help available. We are all here to support you!

Hi D.

I was on neurontin for over a year. 2400 mg per day. It did seem to help; however, for me it affected my short-term memory so bad that I weaned myself off. I would become violent in my sleep and could not remember the simplest of things. (I would rent a movie, watch it and rent it again two weeks later. No memory of it.) It worried me so that I would just not talk with my husband or children for fear of repeating myself. I think I am a rare case, and I do know that it works very well for most people. It's worth a try if it gives you some relief. I've also heard that Lyrica works well, but also with alot of side-effects. Good luck and welcome here. You will find many, many caring and compassionate people here. I have learned more here than from all of my doctors combined.

Kim

Hi D, I used neurontin for a short time. I had side effects that I could not tolerate. It caused me to pass out and be very dizzy. After I woke up in a snow drift, I decided enough was enough. I was not on it long enough to evaluate how well it worked for pain. It seems like many people on this forum use it very successfully and have good results. Good luck and welcome! Lisa

From patients and professionals I have had experience with, neurontin is often the FIRST drug tried for suspected RSD.

I have RSD in my foot (specifically my big toe) and I take 1800 mg of neurontin a day for my "mild" RSD. It has worked very well.

My side effects are limited to a bit of drymouth and a little drowsiness, both of these side effects have lessened over time. My podiatrist tried weaning me off the neurontin and the pain came back, slowly....but within a few weeks. Life WITH neurontin for me is much better than without it!

Getting another opinion is always a good idea because of the rarity of the disorder, the complexity of it, and difficulty to personalize a treatment plan.

My primary doctor for my RSD is my podiatrist who is pretty familiar with RSD/CRPS, but I also see a pain management doctor. These two consult with each other and on the same page as far as your treatment.

There are a lot of things that can help you but you need to adopt a methodical testing strategy of these things with the help of professionals that have a good fundamental understanding of the disorder.

Good luck!

Just wanted to add........

Please never think it's rude to jump in with questions.....That's what we are here for !

I get some relief with 2400mg of Neurontin. I still require narcotics too.

I am highly allergic to Neurontin. I hallucinate and slur my words and it makes my skin crawl...Lyrica is much worse for me and the reaction is VERY severe. I do better with antidepressants, xanax and hydrocodone....I hope everything works out for you :)