|From Our Neuropathy Friends Facebook page|
For example, if someone asks how you are, and you say, "My feet are killing me!" you're probably not going to get a good response if their feet are fine. If you say that your plantar fasciitis is acting up, and they've had the same infuriating ailment, you could probably talk for a long time. Similarly, if you say your neuropathy is driving you crazy and you're talking to a fellow sufferer, you'll be good to go. If not it is just not going to sound that interesting, or that believable for that matter, to try to explain to someone that your feet can be numb and painful at the same time, that you feel like you're walking on rough sand, or on little nails, or that your feet have an electric current in them. Or that, tantalizingly, it will get better but then it will sneak up on you again.
The 4,325 members of the Facebook group Our Neuropathy Friends know what it's all about. I don't post much, but I did the other day, and I got some helpful advice, and support, which is also important. Of course the remedies are all over the place because each person's experience is individual. Some have found relief from CBD. I've also checked in to a group called CBD Oil Users, with 161,860 members.
I take1,500 milligrams of gabapentin (Neurontin) daily. It takes the edge off, but the results are not great, because there always is, at minimum, a buzz. I get acupuncture and have been using some CBD. (Short for Cannabidiol, CBD is the non-psychoactive component of the cannabis plant, not the part that gets you high, tetrahydrocannabinol (THC).
Sometimes I think it's helping, other times, I think not. I'm encouraged, though, because studies have shown that cannabinoids can alleviate neuropathic pain. I recently met some people who are happy with its benefits for themselves and for their dogs. In case you haven't noticed, you can get CBD all over the place, even in the mall. Where I'm getting it, and how I'm using it, is material for another post.
With the latest flareups, I decided it was time to check in Dr. Ugonma Chukwueke, (pronounced Chew-kwe-kee) the Dana-Farber neurologist I saw a couple of years ago. I left a message and was supposed to get a call back but didn't. Melissa nudged. I got a call back from a scheduler who said Dr. Chukwueke is not the person for me. Neuropathy like mine, resulting from chemotherapy, is not her expertise. She specializes in neuro-oncology, or neurologic complications of cancer, for people who have cancer, not people who have chronic conditions resulting from treatment. I wondered then, why I got sent to her in the first place. (Picture eye roll.)
In any case, I now have an appointment for next Friday. It's at 9:30 a.m., which is not so great. But the doctor, David Pilgrim, sounds great. He has excellent patient reviews and the impressive title of chief, clinical neurology, Brigham and Women's Faulkner Hospital, and instructor, Harvard Medical School.
In addition to discussing alternative treatments, I'll bring up the possibility of switching to Lyrica (pregabalin.) As I wrote in this story, both gapabentin and pregabalin have side effects. I don't think I'm taking the highest dose of gabapentin, but I've been afraid to take too much more, for the reasons the patients discuss in the story.