Help asking doctor if this is small fiber neuropathy or something else

@iceblue thank you for your reply on gabapentin. have you been able to figure out the sleep pattern? has the dr mentioned how he determines whether or not to step up the usage? is it based on your pain ?

I'v been on 200 mgs of gabapentin for three weeks. Before that I was afraid to take it but finally gave up trying to tough it out. Now I take it only take it at night. I still have break through burning at night so it hasn't relieved that, but , for the most part, it helps me to sleep. I don't know about lyrica as I haven't tried it, but probably will down the line.

Yes - the sleep issues have been resolved. I think it was a coffee issue, not a Gabapentin issue! I still take my pill at 6 PM, but now have my last cup of coffee after dinner (instead of well into the evening). By 11:30 I am ready for bed.

I am pretty sure that I will be the one who determines my dosage, especially at this low level - and yes - it's all about controlling the pain. He seemed surprised that 300 mg was working - so I suspect most people need more. We will revisit my dosage again in mid-December. Since he is leaving (rats!) and I may be without a doctor for a period of time, I will ask him to prescribe 400 or 500 mg daily, and allow me to determine what I need. I think the highest possible dosage is something like 3000 mg/day - so I am still at a very low level.

How are you finding 200 mg? Are you having side effects?

@iceblue im seeing the neuro tomorrow to speak with him as I haven’t started neurotin or lyrica as I’m nervous about side effects. I’m on imipramine currently and tried mirtazapane 7.5 for the last 30 days but go off it tonight.
Sleeping has become a big issue for me and was hoping that would help. It didn’t and my tinnitus was getting worse so needed to come off that and see how tinnitus is before I try anything else

@ruthofanne

Lyrica was the only medication that helped my sfpn pain. Unfortunately I had serious side effects that put me in the hospital for a few days. Bummed because it was relieving the pain. My pain specialist prescribed Imipramine two months ago and it has really helped. I hope it will work long term.

I've tried so many meds, I wish I had kept track.

I'm sure you've figured out that there is a very long list of medications that people take. I hope you don't have to do a lot of trial and error.

Jim

@jimhd do you or anyone here ever worry about trying a medication because of potential side effects or the issues with coming off a medicine. I used to take anything because of the pain but over the last year I have worried more about that and am having trouble overcoming that.

@albiet

I take 45mg of Mirtazapine as an add on for depression.

Yes, I read the paperwork that comes with a medication every time I start a new one, and often I read the side effects and interactions and warnings. I tend to be somewhat compulsive about being informed. I look for information online all the time. So, I pay attention to what is said about my meds, and all of that is in the back of my mind all the time. I watch for any side effect and warnings in my behavior, in my mind and in my body. I have a standing appointment with my pcp to do a medication check. He's pretty aware of my meds and the reasons for taking them.

Jim

@jimhd how long did it take to to ramp up to 45mg and how’s your sleep. Have u been on it a long time ?The only other antidepressant I’ve taken is cymbalta as that helps with pain also .

@albiet

I started at around 30mg and after a month went up to 45. I haven't taken it very long - maybe a year or so.

I have sleep apnea and use a Bipap machine. I sleep well, though the sleep doctor has advised me to keep it down to 9 hours. Drowsiness is a factor in several of my meds, and I pretty much take them at bedtime.

I tried Cymbalta a few years ago but it didn't help either the pain or mood.

Jim

@albiet, @jimhd, Good evening. Yes, I do worry and I do research. I have had some pretty terrible side effects. One of the reasons I joined Connect was to understand more about medications for anxiety and depression. What I found was that everyone is unique. Duloxetine has been a lifesaver for me......and others find it to be negative in some way.

I do know that the information on the paper you get from the pharmacist is just to avoid legal problems. Even if it only happened to one person, it is listed as a side effect. I am more trusting of the Mayo information and what is posted on Connect.

When it is time to review I meet with my clinician, go over the reason for changes and then together we make a decision. I am now exiting slowly from the Nortriptyline world. First.....I am not as depressed as I have been and second, I have slowly added duloxetine before tapering off the Nortriptyline which is an older drug and doesn't cover the anti-anxiety requirement. These are not easy decisions. I am fearful of bringing back the depression and suicidal thoughts.

I use medical cannabis for pain and when I need to calm down. I have changed dosages and products many times in the last five years. First, there are better products now, and secondly, legalization brings production regulation which is encouraging. For me, there are few side effects if any, from these products. I adjust when the pain increases....either the frequency or the dosage or the product. I hope this helps. It is not an easy road because of the risks of side effects and the long road off one medication and on the next one. Be safe and protected. Chris