Last week I mentioned my dry eyes. Then I told you about my sleep apnea. All very boring, I’m sure. But I feel like I should round things off with a discussion about my third ailment: peripheral neuropathy.
(I have officially reached the age where I talk about all my medical problems. Next will be retirement plans. Then burial plans. This is how it happens).
Several years ago we were replacing the flooring in our living room. While we were in the midst of the project, my aunt stopped by. She admired our new flooring and said, “Oh I would love to have this kind of flooring in my house, but we can’t ever have hard floors because your uncle has neuropathy, and it would be too hard on him.” I’d never heard of neuropathy before, but the word stuck in my brain - it was almost like I knew in that moment that I would have neuropathy someday even though I had no idea what it was. I ended up googling it - pain, tingling, or numbness due to nerve damage, typically in the hands and feet.
About two years ago (coinciding with my sleep apnea diagnosis and my dry eyes diagnosis - fun, right? It all went bad while I was 40) I started having some tingling in my legs and feet. I thought for sure it was diabetes. I had tested pre-diabetic a few years prior, and after some time, retested back in the “normal range,” but I didn’t make the lifestyle changes I should have to keep preventing diabetes, so I felt like I “deserved it.” I thought, “Okay, here we go. I did this to myself. I need to own up to it.” So I called my doctor and made an appointment to check things out. She ran my labs, and to my surprise, my A1C was in the normal, healthy range. I was relieved about the lack of diabetes but not sure what would come of my feet since we didn’t determine a cause for the problem.
In the beginning it was pretty mild, but over time it started getting more painful. Sometimes it was intense tingling. Other times it felt more like burning. Occasionally I would feel electrical “zaps” going down my legs and into my feet. It started keeping me awake at night. I would rotate between a weighted blanket and a heating pad on my legs and feet to get through.
I ended up going to a neurologist and having an EMG (they stick needles in your muscles! How fun is that?) The result was “Yup, you have neuropathy.” And that was pretty much it. They told me that if they can't determine what's causing it, there's not much that can be done about it. I don't have diabetes or an autoimmune disorder. I'm also not deficient in any of the vitamins that may contribute to neuropathy (though my doctor had me take B12 for a while just to see if it would help. It didn't). So far, between two GPs, a CNP, and a neurologist, no one has found a treatable cause, so I’m just left to hurt for now.
At this point, I am in pain all of the time. It’s not a sensation the comes and goes - it’s always there, but it changes in severity and sensation. Sometimes it’s only in my feet, and sometimes it goes up into my legs as high as my knees. Sometimes it’s only the bottoms of my feet. Other times it’s the tops or extended out into my toes. Occasionally I feel it in my hands, but that has been minimal so far.
The pain is always symmetrical, so it’s always in the same location and the same severity on both sides. If my left toes hurt, my right toes hurt. If it climbs my left leg, it climbs my right leg. It’s never more severe on one side.
A few months ago I couldn’t take it anymore, and I went to the doctor to get a nerve medication. It helps but it doesn’t take the pain away. It only lessens it. I did one dose increase, and I could go up quite a bit more if needed, but I’m worried about side effects, so I try to be on the smallest dose possible. It has made me gain weight and it is known to correlate with dementia (though it has not proven to be causal - it makes me worry, though). It also causes drowsiness, though I can’t figure out if it makes me drowsy or not (it’s summer after all, and I do tend to have very little energy in summer and nap everyday, so it’s hard to assess the medication right now).
Scotty rubs my feet every night, bless him. I also have a compression foot massager and a medical grade vibration foot massager. I have to be very selective with shoes, and I wear custom insoles.
I went to a reflexology bar a few weeks ago, and while they worked on my feet and legs, I cried because I’m in so much pain all the time, and I experienced a few minutes of relief. It doesn’t last past the massage, but during the massage, I get a break, and it’s very emotional to have that kind of rest.
Now I feel like a big whiner, but I’m not trying to complain or garner sympathy. I’m just telling my tale because I occasionally mention neuropathy here, but I’ve never really explained what it is or how I came to have a relationship with this meddlesome ailment.
What I often wonder is… did I will it to happen? Did I do this to myself back when my aunt mentioned it to me, and I got fixated on what in the world neuropathy was?
Are my mind powers that intense?
If so, why did I waste them on neuropathy? Can I exchange my self fulfilling prophecy for winning the lottery or finding a candy bar or something?
All is not dismal and dark, though. I accomplished some big things this week in regards to my sleep apnea:
Impressive, no?
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