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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 7 hours ago | Replies (6295)

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@scain

Hi Barb, I also meant to add that if you have been living with PN for 30 yrs., you might be the resident person to run things by before investing or wasting time with different stuff to help with this problem. I have just been officially diagnosed with PN. I say that with a grain of salt as I began having mobility problems, I googled the symptoms and diagnosed myself. That is also how I found this site. Anyway, I also take into account that just because we all have PN, it doesn't mean that we all have the same symptoms or that any one thing will be helpful. That said, I also take pregabalin for a different problem, but when I finally met with the neurologist after a 6 month wait, she said that that drug is the most helpful for nerve damage pain, etc. However, I have noticed in the past week or so that the pins and needles are starting to really act up at night and they prevent me from getting a good night sleep. Is that why you are taking tramadol too? As I said, being new to this game, I am just trying to figure out what is helpful and not so helpful for the majority of PN sufferers. I too, am concerned about living independently as long as possible. My older sister (18 mos.) said that when we finally have to go to assisted living, as a group of baby boomers, we are not going to want to listen to the "canned music" that they play. Of course, she was joking. But with that in mind, I just put together my playlist on Spotify so that I can at least listen to music that is my choice. Trying to control the things in our power that we can control I guess. Thanks everyone for sharing. I think that that one thing might make us different from our depression era parents who seemed as a group to go to the grave with their problems. Susan

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Replies to "Hi Barb, I also meant to add that if you have been living with PN for..."

Hi, Susan (@scain),
I appreciate your trust in the length of time I've had PN, but that really has nothing to do with what will or won't work for you. Bummer, I know. Yes, the Tramadol is for pain, along with Pregabalin ~ but I'm not sure I can compartmentalize which does exactly what.
Actually, I was not medically diagnosed until an EMG in 2021. And I wouldn't have known to have that test had it not been ordered by the orthopedic surgeon who operated on my back a month later. Knowing what I do now, I am sure that the surgery was responsible for worsening the neuropathy that I'd had all those years but which had gone undiagnosed (and therefore untreated except for an over-the-counter eucaliptus/menthol spray for the burning), and that my surgeon was smart enough to have a record of the diagnosis before performing the procedure.
From what I have been able to discern from the comments here on Connect, the EMG would tell you, among other things, whether yours is Short Fiber or Long Fiber. It seems to make a difference as to which treatments prove more effective.
I have noticed that over the years, the symptoms that present themselves seem to cycle, or come and go. Many years ago one thing that drove me crazy was an itching so deep inside my heels that nothing could relieve it. Then for many years that seemed to go away and be replaced by terrible pain that kept me up almost all night. Now, with pain almost completely under control, the itching has reappeared occasionally, and mobility and balance are daily challenges. Go figure!
I wish you all good things as you seek information and answers! It's not always easy or straight-forward.
Barb