Peripheral nerves carry information to and from the brain. They also carry signals to and from the spinal cord to the rest of the body.
Peripheral neuropathy means these nerves don’t work properly. Peripheral neuropathy may be damage to a single nerve. It may be damage to a nerve group. It may also affect nerves in the whole body.
A few months ago while taking a shower I noticed that when the loofa passed over the back side of my right calf, just below the knee crease, my skin felt funny. I’ve had trouble describing how it feels to people. It’s like describing what a color looks like. The best I can do is it felt numb and at the same time it felt super sensitive. I thought it might be a bruise or something and when I got out of the shower I looked behind my calf and there was nothing there. My leg looked completely normal. I thought maybe it was a weird bruise and decided to see if it would just go away.
The couple of days later, again in the shower, I noticed the “numbness” had taken over a bigger area. Now it was the upper half of the back side of my calf. I told my girlfriend about it, then I told my friends. Everybody agreed that was weird but my leg still functioned fine and I wasn’t in any pain so it didn’t seem like anything serious. Everyone thought the same as me, some kind of weird bruise or injury of some kind. The thing is I wracked my brain trying to remember an injury that would cause something like this. I don’t recall anything. No falls, no bumps, no time I was sitting weird and my leg hurt after, nothing.
There was no change for a the next few days. The Saturday of that week we went to Cherry Creek Park to release some balloons for a friend who had passed away. Everyone brought their dogs and we walked through the park for half an hour, probably more. After the walk I noticed my leg, the part that had felt numb, now felt like it was on FIRE! The area had grown again too, now it was the whole back side of my calf. Me and my girlfriend had some errands to run but I asked her if we could go eat lunch somewhere. Maybe if I rested my leg while I ate the pain would go away. It didn’t.
The burning didn’t stop and we ended up having to go home. I tried to relieve the pain on my own but nothing worked. I tried ibuprofen, I tried an ice pack, I tried various creams we had around the house. Nothing made it better, and every touch hurt more. II finally decided I needed to see a doctor. I don’t have medical insurance so I opted to head to on of those low cost clinics. They tested my blood sugar to see if I was diabetic, I am not. They told me I had peripheral neuropathy, nerve damage, and prescribed me gabapentin. They never dug into what the cause of the damage was. They told me it might go away and it might not. They told me to come back if it got worse. That was in February.
Since February my leg got slightly worse but now seems stable. The nerve damage is still present and some days are worse then others. My leg itches a lot, when I scratch it I can barely feel my nails. I have a literal itch I cannot scratch! Sometimes I get pins and needles, sometimes I get stabbing pains, and sometimes i feels like drops of cold water running down my leg. The burning hasn’t come back though and I credit the medication for that. I started out at 300mg, 3 times a day. I built a tolerance quickly and now when my leg is bad I take 600mg at a time instead.
At this point I don’t think it will go away, which is really depressing. I’m not even 30 yet and I have to take these pills 3 times a day. Gabapentin makes my nerve damage manageable but it has some crappy side effects. I get confused some times. I forget what I was doing or what I was going to say. I don’t feel present. Like, my body is in the present but my mind is two steps behind. I get drowsy. If I take two at night I sleep really well but I wake up in a horrible fog. It’s worse then just being “slow”, I feel like my mind is empty. I have no thoughts. I stutter here and there. My tongue stops working properly and I get clumsy.
The worst side effects are the mood swings though. They come and go but I can tell it is the meds. I think it’s because I was struggling with depression before the meds. Sometimes I am sad for no reason. There is nothing that can make it better. My self esteem plummets. My girlfriend noticed it too. It is especially bad if I forget my meds or mess up the timing a few days in a row. I ended up having to put 3 alarms in my phone to remind me to take my pills. I got in the habit of turning the alarm off then forgetting to take the meds so my girlfriend made me promise not to turn off the alarm until after I had taken the pils. I can snooze it but I cannot turn it off.
I try to stay positive about it. More often then not my leg is just very uncomfortable. There are worse things to have and many people with peripheral neuropathy are in much more pain than me. I just have bad days here and there though. I worry it will keep getting worse. I will have to take more and more meds and the side effects will be worse. I cannot live in that fog everyday. I guess I will deal with that when it happens. I can’t waste energy worrying about something that might not happen, and even if it does I can’t do much about it. So for now, I am alive, I am breathing, and there is still happiness to be found. It will be okay.