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I am also 64. I have not had the debilitating dizziness with my SFN, but I had been diagnosed over 30 years ago with Ménière's disease right after having my
daughter. I understand what you are going through. My SFN happened so rapidly, that I feel like it's not even my body. I don't know what will happen next. Gabapentin helps with the burning, but my back pain is awful at times. I am just wondering if medications could also be causing some dizziness? I cannot lower my dose because the burning feeling is awful in my hands without it. I also just found out I have osteoporosis in my spine and arthritis. I was very active up until July of this year (my symptoms started at the end of May). It has been very overwhelming and depressing because my neurologist did not believe me; he told me I did not even have neuropathy. The biopsy was ordered by the rheumatologist, so now I feel validated. Still, I have to find another neurologist.
I am very depressed at times. I think you replied to me on another thread. How do you stay positive?
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Hi Jan. One thing in my favor is that my SFN came on slowly, so the changes have occurred gradually. Maybe John can find my Tegretol story for you.
I am a positive person by nature. How could I survive otherwise? Facts: I divorced after 30 years, but my ex-husband still will help me, and I help him. My long-time girlfriends (from church!) are slowly drifting away as I become less able to do the things I they enjoy, such as shopping, gossiping, meeting for long brisk walks. But through careful choice, I am surrounding myself with other friends, the ones who understand, and are kind, and will spend the day driving me to UAB for medical appointments.
I do volunteer work. Having to quit my beloved profession was and still is painful. But I’ve always been a caregiver, so I do the things I can do. Fostering kittens is hard work but lots of endorphins! I’ve learned to limit the way I do that.
I am a gardener. I’ve modified my expectations. I work in small bursts of time, and have purchased tools that make it easier and less painful.
I am a nurse, so I’m exceptionally good at evaluating my progress and medications. Antidepressants help, not only with depression, but also nerve pain. Find a great medical team and work with them, even if it’s in another city. Be ready to try and discard lots of medications, therapies and theories until you hit the right combination. I had genetic screening done, because my sister has the same symptoms. It did not show anything yet, but new research is happening all the time.
Lastly, but most importantly, I am a lifelong Christian, and have always been a “church lady”. I am in my pew worshipping every Sunday, sometimes late, sometimes wearing sunglasses when I’m dizzy, and sometimes shedding a few tears. I’ve chosen to sit with people who genuinely care about me. Outside of church, I pray - some days more than others, when my suffering or sadness are particularly bad.