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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@artscaping

@blocker, Good afternoon. I can feel and have great empathy for your journey. I am walking right beside you with idiopathic small fiber neuropathy (SFN). My situation is a bit complicated with chronic myofascial pain syndrome (CMPS). Over time, the zaps and electrical shocks continued to wake me up about 5:30 a.m. just so I could have a day of attempts to control pain and numbness in my extremities.

I can sense that you are distressed about the symptoms and also the impact from the very young onset at age 44. I can also just imagine how concerned you are about stopping the PN process before it continues to manifest itself with more aggravating and limiting symptoms.

First, may I suggest.....take your gabapentin in the evening before bedtime (with your medical provider's approval) to have a more restful and uninterrupted sleep.
Second....Discuss your expected outcomes and results with your medical provider and then give him/ her factual and inclusive results about your experience.
Third.....expand your approach to be more integrative with a focus on mind-body connections. For the body, the best solution I have found has been myofascial massage on a weekly basis. Here is the link to the discussion on Connect :
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
It might be helpful to hear from @jenniferhunter when she has a chance to review your story.

It seems like this is enough for right now. Just know that I understand, and in fact, we at Connect all understand pain, disappointment, and struggle. Today, many of the mentors as well as me, are living a pretty enjoyable life in spite of the existence of a condition for which there is no known cure and only partial containment. Please let us know how your days are going. Chris

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Replies to "@blocker, Good afternoon. I can feel and have great empathy for your journey. I am walking..."

Chris, thank you so much for your encouraging words, they mean more than you could know. I am the only person I know who has idiopathic neuropathy, I have 2 friends with diabetic neuropathy but not having someone to talk to who understands what I am dealing with can feel lonely. I have an amazing husband who is incredibly supportive and the most caring, thoughtful teen age boys who do everything they can to help me.
I actually take 600mg Gabapentin 2 times a day and 900mg at bed time. It does help but the night time pain sometimes seems unbearable. When I wake it's a rare occasion that I can get back to sleep; I've developed an intimate relationship with coffee. 😉
I'm open to any suggestions and am grateful to have support and understanding from those who truly understand.