1. < Neuropathy

Too much life to live

Posted by Mrs. H @amberheilman, May 5, 2019

Hi guys. I am 39. I have been diagnosed with sfn just last week. I have had symptoms for about 4 years. It wasn't until my feet started burned more consistently that I new I had a problem. It started in my bladder, 3 months after I had to have a total hysterectomy. I went to dr after dr. All of them looking at me as if I was phycosimatic & or they just wanted to push pills. When my feet started burning to the point of not being able walk in certain shoes, I realized that I might have the same condition as my father. He was diagnosed with pn several years ago. Finally after becoming strung out on opioids, he got a spinal cord stimulator. It changed his life!!
My feet began burning about 5 months ago. Since then every week, almost every day, I have new symptoms and new parts of my body that are becoming effected. NO SHIT! Within 5 months it has gone from my feet being uncomfortable in certain shoes to burning, stabbing, vibrating and numb areas all the way up to my face. Something that has help me cope is my father. We have been able to compare feelings & frustrations. He would give me hope that I can still have a life & enjoy my family as they grow & as my husband & I share our time together.

My dad died Tuesday.
He was 63.

My mom doesn't understand what I am going through. She trys and hurts because I hurt. My husband is AMAZING! The first thing I thought when I was diagnosed was, poor Adam. He deserves a better life. He will ALWAYS be here for me. That is great for me, but it absolutely sucks for him. My kids are 18 & 20 so they can move on thankfully.
I guess...I am just having a hard time staying positive. Just put me down! Geez! I am not going to stay drugged up. I am not going to be a test dummy.
I know I am rambling & I know what everyone is going to say. I haven't given up. I am looking into alternatives. Believe it or not, I am always the one who is positive & pumps up people around me!
I am just tired already and I am only 39

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hotfooted | @hotfooted | May 11, 2019
In reply to @amberheilman "Thanks John. I have read your story and that is one reason why I have joined...." + (show)
@amberheilman

Thanks John. I have read your story and that is one reason why I have joined. Myofascial therapy is great! Before becoming a teacher, I was a certified massage therapist and worked at a pt facility for 7 years. I would definitely encourage myofascial release.
Please add me to any group you feel would I would benefit & help others at the same time.
As far as diagnosis & treatments, I was first diagnosed to have nerve damage from surgery. Then painful bladder syndrome. Finally, SFN last week. I have tried gabapentin, which I did not react well to. Lyrica helped the most so far, but i can not function mentally. It is super expensive for a teacher's wages and the long term side effects are scary. I have been trying medical marijuana at night which helps just as much as lyrica with less side effects however, not liking the idea of smoking. I would much rather have natural medicine. Call me a hippie, but i am sceptical of pharmaceutical drugs. My neurologist said he is not going to do any biopsies to make it officially SFN. He said there is no reason to make scars when it is obvious. My concern is the speed of my symptoms. In 5 months the numbness and burning is all over my body. Today...my tongue is numb. My fear is that I am misdiagnosed again or in another year I will be a lump🤣 in a chair.
Sorry, that was icky. They do have some really cool designs for adult diapers

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Like you, I'm afraid of pharmaceutical drugs, too.. I hope you get a diagnosis quickly, but also know that it's so very difficult to do so.. My own problems have snowballed lately and I'm trying hard to find answers and anything to ease my pain and improve my life.. Presently I'm keeping daily records of how a Homeopathic rubbing oil "Frankincense and Myrrh NEUROPATHY" has been helping my Erythromelalgia/Neuropathy feet.. Not a cure all, but has allowed me to be on my feet around home a bit more.. If you're not already keeping a record of what's happening to you, I recommend it.. I'll be taking a copy of mine when I see my doctor on Monday.. hope it makes the picture more clear to him and should save some time explaining what it's like for me on a daily basis.. We have to hang in there and hope for some relief.. Blessings on you and your family..

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Mrs. H | @amberheilman | May 11, 2019
In reply to @hotfooted "Like you, I'm afraid of pharmaceutical drugs, too.. I hope you get a diagnosis quickly, but..." + (show)
@hotfooted

Like you, I'm afraid of pharmaceutical drugs, too.. I hope you get a diagnosis quickly, but also know that it's so very difficult to do so.. My own problems have snowballed lately and I'm trying hard to find answers and anything to ease my pain and improve my life.. Presently I'm keeping daily records of how a Homeopathic rubbing oil "Frankincense and Myrrh NEUROPATHY" has been helping my Erythromelalgia/Neuropathy feet.. Not a cure all, but has allowed me to be on my feet around home a bit more.. If you're not already keeping a record of what's happening to you, I recommend it.. I'll be taking a copy of mine when I see my doctor on Monday.. hope it makes the picture more clear to him and should save some time explaining what it's like for me on a daily basis.. We have to hang in there and hope for some relief.. Blessings on you and your family..

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I agree on all fronts. Sorry to hear your health has snowballed. I am going to try the f&m. Thanks for documenting your experience. I started documenting April 21st, but by may 6th I stopped. I took photos of my body and then drew yellow for the areas of numbness & red for the areas that burn. By may 6th, it was ALL OVER MY BODY, so I stopped. My tough is even numb. I called my neuro. He told me to take the cymbalta. All that does is help with the pain. I would rather have more natural treatments than a pill.
Anyway, thanks again for your documentation & your ear, or would it be your eyes😁

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