[Ccm47]

I have relatively mild RSD in my foot for about one and a half years. I have four sympathic blocks that helped some but may be wearing off a little; last one was a few months ago. I went to a different pain doc who is also in a neurological clinic at the local medical center. He put me on neurontin (gabapentin) and voltaren, plus a little physical therapy. He wants me to back off on the voltaren because the swelling is not so bad now (most of the swelling went away with the blocks). So he put me on 300 mg neutrontin three times a day to see if I could tolerate it and if it would help. Some days it helps with the pain a lot, and these have been the best days I've had since this started. Those days I also feel a little lightheaded and sleepy, which isn't great at work. Other days, I am not light headed, but it also doesn't seem to touch the pain. The doc said it was probably due to day to day differences in metabolism of the drug, and to add one more dose at night on those days. He also said we can increase the dose quite a lot as needed, but we should go slow because of the little headedness, which will get better. And he said that the effect of neurontin will wear away eventually.

So I have a few questions about it for those of you who have used it and had success. I want the neurontin to work as long as possible, because I never know what the future holds. Would it make sense to live with the bad days in order not to up the dose too quickly? Will that make to long term approach to this better? Since my RSD is on the mild side, I am still able to work and do necessary things like grocery shopping. With the neurontin, these things are easier, but without I just push through. Can I prolong the positive effects of the neurontin by keeping the dose as low as possible?

Second, on the days I have good pain control, should I push myself and do a little more? Like go for walks? I would love to start to do some more leisure activities, but am afraid I shouldn't push my luck.

Third, is there anyway I can change things to have more of the good days? If it is due to metabolism, can I change other things like caffeine or alcohol? (I don't drink a lot, but pccationally a drink with dinner or one or two with friends some weekends).

Fourth, is lyrica better enough to pay an extra $50 a month? I don't have $50 a month to throw around (who does, really), and since the neurontin is working okay, I'd rather stick with the lower cose generic drug then the higher co-pay drug. But if the long term control etc is better, is it worth it?

Sorry this is so long, and thanks in advance for your help.

[birchlake]

Long time (5 year) neurontin user here. I have CRPS in my foot as well.

The doctor is right that you are on a relatively low dosage. I take 600 mg three times a day (twice what you are taking) and I understand that some people take 3600 mg daily.

I would absolutely agree with increasing your dosage a bit to see if that helps. You need to titrate the amount of drug you take until you find the lowest EFFECTIVE dosage. That involves some experimentation both up and then back down again. Everybody is different. Some people do better with dosing 3 times a day; some four. I found that three is enough as long as I take 600 mg each time, but if your doctor asked you to try an additional dose, I'd start with that. It took me about a year to find the right dosing strategy.

As for side effects of neurontin, the main ones for me are dry mouth (which got better over time) and a bit of brain fog or forgetfullness. And oh yes, some occasional nausea, but nothing real debilitating.

As for the effects of neurontin wearing away eventually, I haven't found any evidence of that, either in print or in my own use and others that I know. So don't worry too much about that. I'd try to maximize the effectiveness of it as best you can. As for trying Lyrica, Cymbalta, etc. you would never know unless you try. It helps some but does nothing for others. I tried both and had no success. Neurontin is my primary med. for my CRPS. I also take naproxen sodium (over the counter) which helps a bit with swelling and pain; I also take amitriptyline which helps a bit with my CRPS and trazodone to help me sleep. Sleep is very, very important. Without a good nights sleep, it's tough to handle chronic pain.

And for exercising, you need to find your own personal threshold. For me, it's about 20 minutes on my feet and then it's time for a break. "Use, but don't over-use" is my mantra. Everyone is different here as well. Don't push too much; pushing through is not an effective CRPS strategy. It can set you back and start a pain flare.

Too much caffeine and alcohol are not a good thing with CRPS, but small to moderate amounts don't have any affect on my symptoms.

Good luck and be sure to keep us updated!

[Ccm47]

Thanks birchlake. I'm really glad to hear you have been using it for a while and still benefiting. The sympathetic blocks seemed to have worn off so quickly I guess I got a little discouraged. I feel lucky the neurontin is working, even if not maximized yet.

In terms of sleep, that is one area where I need to pay more attention. I am tending to stay awake longer watching tv or playing games on my ipad because the distraction helps. But I am also getting up too early. My foot feels best in the morning, so maybe I am over eager to start the day. I think lately also the neurontin is helping me sleep but wears off and I wake up early.

[finz]

I take Neurontin 1200 mg twice a day, for quite a while now.

When I started on it and was titrating up on the dose, it did make me very drowsy, so most of my dose was scheduled at bedtime (600 mg every morning, 1800 mg every evening) I took it that way for a few years, then found that it woke me up and gave me a bit (it's all relative ) of energy, so I go with 1200 mg twice a day, breakfast and dinner. That's a convenient time for my doses because I have to take Metformin then too. Since I started Neurontin, I gained weight (I was already a big girl, but got bigger) and developed type 2 diabetes. As I just confessed, I am a big girl, definitely pretty sedentary for years with pain issues, and I do have a family history of type 2 diabetes, but the family members were all in their 70's when they developed diabetes.....I thought I had 30 years before it got" me. No such luck. Neurontin is known to cause increased blood sugars. Since being dx'd, I've done my own little science experiments too when I tried getting off Neurontin to try Lyrica. Bloodsugars were better without either drug, both Neurontin and Lyrica increased my bs's.

Okay, enough side effects ranting. For what it does to help with the pain, it's worth it.

After titrating up to this dose, being on it for awhile, going off it to try Lyrica, same effects/cheaper price, back to Neurontin, back to this dose..... It's been a good 5 years since then and I'm still at the same dose and it's still doing it's job. I haven't needed an increase in dose. My disclaimer is that I am also on Cymbalta and narcotics, Neurontin is only one piece of my pain med regime.....and I am not able to work.

For me, getting to the RIGHT dose of Neurontin was key at the start and I haven't had to worry about increases since then. Good luck !

[Brambledog]

I've been on both drugs, Lyrica first, then I swapped to Neurontin because my docs thought it a good idea (suspect cost was a big factor), now I'm back on Lyrica again.

I know it does work for some people, but the Neurontin did not touch my pain in my foot, in fact my pain levels got progressively worse while I was taking it (max was 600mg morning and afternoon, 900 mg at night). I also had two nasty bouts of GI pain, nausea and vomiting - the first time, my GP thought it was a stomach bug (nobody else got it!), the second time they were more concerned. I noticed no difference in my CRPS pain levels during the 3 days I couldn't keep the tablets down, so I gradually titrated off the Neurontin. I felt so much better after coming off it that to be honest I wouldn't go back. My pain doc said my GI problems with it 'weren't uncommon' and it was 'powerful stuff'.

Going back on the Lyrica I noticed the pain difference really quickly - It doesn't stop the pain, but has taken away the worst of the knife-like stabs, and my stomach is doing ok again. To be fair, I am a coeliac (no gluten, quite common with CRPS patients) and I cannot tolerate ibuprofen, so maybe my stomach isn't as tough as some other folk!

Bram.

[Ccm47]

Thanks everybody for this really helpful information.

Finz - I also have a strong family history of type II diabetes and progressive weight gain with aging. I have been using a calorie counting app since New Years (still sticking to my resolution mid way into the year!). I notice in the past month I seemed to stop making progress, and your post explains why... It is probably the neurontin. Your advice is really helpful because maybe it will help me be more careful with my healthy diet goals from now on.

Bram - my stomach isn't as tough as it used to be either, because of all the NSAIDs I took when this started and wasn't diagnosed right away. I have been taking Prilosec almost every morning because I thought the voltaren would cause problems. I was going to drop the Prilosec when I drop the voltaren, but maybe I will stay on the Prilosec. I love spicy foods, and I've found I can still have them occationally if I also take an extra Prilosec in the evening on the days I eat something really spicy, since my problems have mostly been with reflux when lying down.

[alt1268]

Hi. I have been on gabepentin since 09. I started low like you, but as soon as I could tolerate the side effects I double it. I am now on 600mg 3 times a day and 1200 at bed. The biggest side effect I have noted is brain fog and weight gain.

If you find it is working I would stick with it. Why change something that works? Also I got relief from blocks as well. My dr. did a serious of 3, one week apart and that really helped.

Good luck!

[KathyUK]

I've been on gabapentin, pregabalin/lyrica and duloxetine/cymbalta. First thing I will warn you of is that the latter two are hard to withdraw from.

Gabapentin worked a bit for me but at that time I wasn't happy with a bit. I had a few runs with it with breaks in between as for me the good effects lessened after a few months. I didn't gain weight on it but I didn't lose any either (I'm a fatty). I was a bit sleepy and foggy at first but it didn't last long on a lower stable dose. When I was at the highest dose it was there all the time but wasn't bad. ETA: to be honest if it's working I wouldn't knock it. Going up a bit might knock the flares back a little but the side effects may raise too so it might be a case of working out which is more important. It might be that the doc can offer you a breakthrough medication for bad days so you don't feel as muzzy overall from raising the dose.

I tried Lyrica earlier this year as I was told it was better and had far less side effects. It wasn't and it didn't. I gained a dress size in a month and as a result of both Lyrica and Cymbalta I also lost my sleep and my ability to enjoy sex. It also exacerbated my brain fog to the point that I was mentally stumbling over simple things, for example I forgot my address when asked at the chemist! It's hard to know what was Lyrica and what was Cymbalta as both have a reputation for the sex and sleep side of things but the weight and brain fog were most likely the Lyrica.

I wasn't warned about coming off them and the pain docs said I could reduce both by half over a couple of days then come off as I hadn't been on them long. The first week of withdrawal was ok but then I had five weeks of a bit harder to cope with withdrawal. Brain zaps and electric shocks and insomnia were the main issues with the insomnia getting worse and sleep paralysis coming into play which is still happening now. It could be that the insomnia and sleep paralysis would've happened anyway, I don't know. Also what works for one might be rubbish for another and vice versa. I just wish the docs warned people about withdrawal and didn't pretend Lyrica was somehow better for side effects.

[Ccm47]

Thanks again everyone for all your input. It is so hard to figure out what to do because it seems not only is every person different, but every day seems different. Today was a good day (yeah!), mostly because I sat at my desk at work all day with almost no walking. The few days before were more active and more painful. The best part about today was that the brain fog, as you call it, wasn't to bad so I was more productive. I had more caffeine this morning than usual, so could that be why? I know we are supposed to stay away from it, but I think maybe the problems it causes would be worth it. I've been sleeping so much better since going on the neurontin. Does anyone else had advice about reducing the brain fog other than waiting until my body gets used to the drug?

[Imahotep]

You want all the physical activity you can tolerate probably, but no more. It took me over ten years before I got any sort of warning I was doing too much when I was doing it. The warning is subtle but I heed it now.

It's probably best to keep all dosages as low as possible and to not use things that are no help. Even if a useless med isn't causing side effects it might interfere or change the operation of ones you need. Generally, start all new meds one at a time so you can gauge its effects.