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Extreme pain in my feet. Neuropathy

Neuropathy | Last Active: Apr 29, 2023 | Replies (51)

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@californiazebra

Hi @annregister -- Sorry to hear about your pain issues. Did the Lyrica help at all?

I have a lot of disorders people can't see including neuropathy. I completely empathize with your frustration of appearing normal to others while battling so many issues. If you have a cast on, people can understand that. Invisible disorders are another story. A perfect example is my neuropathy (HNPP) has made eating a challenge. I have trouble controlling many foods in my mouth and aspirate as a result when the food slips down my throat before intended. That became constant 8 years ago. It's both a medical and social problem. Then 6 years ago, I lost my ability to taste and smell after taking very strong antibiotics for diverticulitis. So I can just tell someone about these two problems and their next sentence is, "Oh maybe, you can eat x, this is how I make it and then they start telling me the recipe and how great it tastes." Did I not just say I can't taste anything? Seeing is believing as they say.

Yes, invisible disorders can feel lonely. My son who inherited my HNPP once said to me, "I'm not glad you have HNPP, but because you have it, I'm so glad there is someone else who understands what it's like. No one ever believes all the crazy things that happen due to this. He had to have nerve transposition surgery in both arms. He has weird stuff from it too.

I hope you can find something to take the pain away.

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Replies to "Hi @annregister -- Sorry to hear about your pain issues. Did the Lyrica help at all?..."

Lyrica dulled the pain some, but the dark thoughts took over my life. It wasn’t worth it to me.

I’m so sorry your son inherited this disease.