Member Neuropathy Journey Stories: What's Yours?

@jimhd @jestfactsmon @fiesty76 @rrwinney @sunnyflower And all my fellow Neuropathy Warriors! I am loving that you are sharing this deep emotional stuff. Jim, you write with such eloquence!!! You are opening like a flower, and such a writer!!! I am so honored that you have shared more of the depression you have went through, as I know you much more now. I get crazy from superficial interactions with people, and realize, that I need the depth of Connect. And Fiesty, you are right! The support that Hank gives is over the top! Hands down, no comparison. Hank, to share how you have also struggled with depression and suicidal tendencies was brave of you! Of course, I just want to hug you forever. I know your life is so hard with your spouse being so sick, and I know that must take a tremendous toll on you. My husband is a distant man, and always has been. It is probably part of why I fantasize about seeing warm, open, people in person. My husband cares, but is not one to express emotions much, at all. So at times, I suffer from it. I really do not feel you change people. It is hard enough to even change yourself. I also believe that unconditional love is the only thing that lets me function in all my deeper relationships. There actually is a freedom in that. Just letting people BE, as they each have their burdens and stories. JIm, I get a lot like you, wondering if constant foot complaints are making people crazy here. I get guilty, as I am pretty pain free else where, except for odd sensations from electricity running through my legs, that borders on pain. Does it matter, how many places in your body feel pain, when only one place can ruin your life when so extreme? Rachel and Sunny, I know you have so many things going on everywhere, and often I think, what the Hell have I got to complain about? But the pain in my feet is so damn severe, that I find a cry very often, especially on days when Kratom is not an option. I know one thing. Shit happens. For sure. I am beginning to ramble, so I will go now. Love to you all, Lori Renee

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@jimhd I know what you mean about emotional pain Jim. I had most of the worst of mine from about 9 years old until I was about 35 (just did not feel like I fit into the world). My suicidal thoughts happened mostly during high school and college, with the crescendo being when I was about 23, had graduated and was working for the Chicago Transit Authority living alone in an apt. in Chicago. I was steeped in depression, tried to sleep as long as possible, often like almost 14 hours a day. Yup, my pain came early. I had a God epiphany one day and it melted me into submission and sheer joy (I didn't believe in him before that). That was the start of my healing.

My dad was a very loving person in his own way but did have the bbdc syndrome and passed it on too me and my brothers. A lot of guys our age were raised that way as it is how men were told to be back then. Thank god that has changed. I feel for you Big Jim, I definitely understand THAT type of pain. I am so glad you came through your darkness and are in a better place. Best, Hank

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@jesfactsmon , I now know 2 very brave men, Hank and Jim. Two men who have weathered the storm of despair and told their stories. My hat is off to Hank (and Jim) Thank You for sharing your story. Hank ,you truly serve as an inspiration to all of us. You are fulfilling your God given mission in bringing light to those in need. We bring into our lives the people who will help us to change, to grow to prosper. Sometimes those people are our fathers who did their best but caused us grief. They were there to test us, to eventually move beyond that and understand what it truly means to be a loving and caring father. Hank you have become a truly loving and caring man. A man who can express himself so eloquently. Hank, you have evolved. I'd say you are self-actualizing. You are expressing your true self. Thank You, David

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@lorirenee1 Lori, I think that is a great way to go through life, giving the people you care about support and not judgement. And you are right, change has to come from within a person for it to become a part of them. I'm glad you are here and are being who you are, which is the beauty of this forum, that we can all do that.

And finally, I think it's good to not compare who is suffering more, less or whatever. Because if that were the criterion, I would have to be feeling pretty darn sheepish even participating on this blog with all of you guys (my pain level today is a, er, uh, a "0.2").

Hope you are having an OK day, or better than OK ("C'mon you ol' DRG unit!") 🙄

Best, Hank

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So 2 years ago I had tingling burning down the right side of my body. 2 weeks prior I had gotten a tetanus shot, arm got unusually red and painful. Kind of weird. Went to ER, they did tests and found nothing. Symptoms subsided. In April of this year my eye started twitching for 3 days. I started getting tingling burning sensations in right arm. I feel differently everyday now. Sometimes my face tingles and then goes away. Both arms and feet now feel tingly, numb-like. I try to keep busy during the day to keep
my mind off things, it is hard sleeping at times. Had brain, spinal cord MRI and came out normal. EMG tests showed mild tunnel carpal bilaterally and I am absent in reflexes in both feet. I had a punch skin biopsy last week and waiting to get results. Neurologist thinks it might be SFN. I’m scared and doing as much research as I can. My husband supports me fairly well. My 2 teenagers not at all. They don’t like hearing about my issues. It’s like you need to talk about this invisible thing happening to you. I’m starting a new job in 2 weeks. Will I be able to keep this job? Will things get worse? I have an appointment with my neurologist on the 16th of sept to discuss everything. I thank you for sharing your stories and will be praying for all of you.

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So 2 years ago I had tingling burning down the right side of my body. 2 weeks prior I had gotten a tetanus shot, arm got unusually red and painful. Kind of weird. Went to ER, they did tests and found nothing. Symptoms subsided. In April of this year my eye started twitching for 3 days. I started getting tingling burning sensations in right arm. I feel differently everyday now. Sometimes my face tingles and then goes away. Both arms and feet now feel tingly, numb-like. I try to keep busy during the day to keep
my mind off things, it is hard sleeping at times. Had brain, spinal cord MRI and came out normal. EMG tests showed mild tunnel carpal bilaterally and I am absent in reflexes in both feet. I had a punch skin biopsy last week and waiting to get results. Neurologist thinks it might be SFN. I’m scared and doing as much research as I can. My husband supports me fairly well. My 2 teenagers not at all. They don’t like hearing about my issues. It’s like you need to talk about this invisible thing happening to you. I’m starting a new job in 2 weeks. Will I be able to keep this job? Will things get worse? I have an appointment with my neurologist on the 16th of sept to discuss everything. I thank you for sharing your stories and will be praying for all of you.

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So 2 years ago I had tingling burning down the right side of my body. 2 weeks prior I had gotten a tetanus shot, arm got unusually red and painful. Kind of weird. Went to ER, they did tests and found nothing. Symptoms subsided. In April of this year my eye started twitching for 3 days. I started getting tingling burning sensations in right arm. I feel differently everyday now. Sometimes my face tingles and then goes away. Both arms and feet now feel tingly, numb-like. I try to keep busy during the day to keep
my mind off things, it is hard sleeping at times. Had brain, spinal cord MRI and came out normal. EMG tests showed mild tunnel carpal bilaterally and I am absent in reflexes in both feet. I had a punch skin biopsy last week and waiting to get results. Neurologist thinks it might be SFN. I’m scared and doing as much research as I can. My husband supports me fairly well. My 2 teenagers not at all. They don’t like hearing about my issues. It’s like you need to talk about this invisible thing happening to you. I’m starting a new job in 2 weeks. Will I be able to keep this job? Will things get worse? I have an appointment with my neurologist on the 16th of sept to discuss everything. I thank you for sharing your stories and will be praying for all of you.

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Good evening @kyc117, thank you for posting about your medical conditions and upcoming tests. I am glad that you already got the punch biopsy. That can be a decisive indicator of if and how much your nerves have been disappearing or dying in every cell. Then you can trace their path. Stay with the folks here on Connect. There isn't much that these members haven't experienced. And better yet, they are willing to share and help others.

The major hurdle is that there is no cure for neuropathy and any of its types and causes. We must fight hard to accept the reality and support each other. We are not medically trained, just experienced and ready to help. Everyone is unique.....as you will find out. Good luck with your test.....if you feel comfortable, please share your results.

May you be safe, protected and free.
Chris

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So 2 years ago I had tingling burning down the right side of my body. 2 weeks prior I had gotten a tetanus shot, arm got unusually red and painful. Kind of weird. Went to ER, they did tests and found nothing. Symptoms subsided. In April of this year my eye started twitching for 3 days. I started getting tingling burning sensations in right arm. I feel differently everyday now. Sometimes my face tingles and then goes away. Both arms and feet now feel tingly, numb-like. I try to keep busy during the day to keep
my mind off things, it is hard sleeping at times. Had brain, spinal cord MRI and came out normal. EMG tests showed mild tunnel carpal bilaterally and I am absent in reflexes in both feet. I had a punch skin biopsy last week and waiting to get results. Neurologist thinks it might be SFN. I’m scared and doing as much research as I can. My husband supports me fairly well. My 2 teenagers not at all. They don’t like hearing about my issues. It’s like you need to talk about this invisible thing happening to you. I’m starting a new job in 2 weeks. Will I be able to keep this job? Will things get worse? I have an appointment with my neurologist on the 16th of sept to discuss everything. I thank you for sharing your stories and will be praying for all of you.

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