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

@amberheilman I wanted to reach out and tell you that I'm sorry about your dad, and that you will find support here. John Bishop is a great resource on Neuropathy. Right now, you are being affected by the stress from grief, so the best thing is to take care of yourself as best you can. You might want to get a physical therapy evaluation when you're ready to see if they can help with your pain. Sometimes neuropathy is a physical problem that physical therapy can help. Here is a discussion all about myofasial release therapy, and it has helped me a lot. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/ You can find a provider on the MFR website.

I took care of my elderly dad with end stage heart disease, and I too worried about inheriting that. The worst thing I could do would be to stress myself into believing that I would follow the same path. I've made the best choices I can, and worked at learning to control and reduce stress, because that can cause high blood pressure and heart problems, and stress is huge factor in a lot of diseases. You don't have to stay positive right now for everyone else. Take the time you need to process and accept these changes. Your mom is grieving too, but in a different way and also trying to be strong. You are lucky to have a supportive husband. He might look at this all differently, and it might not be the same way that you view your health. I know my husband has always felt like he wished he could do more for me when I was recovering from surgery or an illness. It sounds like you are the one who is always there as a caregiver for everyone else, and maybe that it what is hard now, because you are having trouble being in that role. It's your turn now. It is hard sometimes to accept help and not see it as a negative thing for someone else, but the help is given sincerely. You will always have those conversations with your dad, and you can remember them when you need his comfort.

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Hello @amberheilman, I would like to welcome you to Connect along with @jenniferhunter and other members. I'm sorry for your loss of your father. I know not having someone to talk to about your neuropathy can make you feel all alone. It is pretty awesome to have a husband who is supportive. I think one of the best things that we patients with neuropathy can do is learn as much as we can about our health conditions. I lived with neuropathy for 20+ years before seeking a diagnosis and something to help with the numbness. I have idiopathic small fiber peripheral neuropathy but only have numbness and no pain associated with it so I had to look for alternative treatments as there are no drugs that help with numbness. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@jenniferhunter has given some really good information on Myofascial Release Therapy and it is great discussion to read through. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following where you can meet other members with similar symptoms and learn what they have found helpful for treatments.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

@amberheilman, are you able to share a little more about your neuropathy diagnosis and any treatments you have tried?

John

Liked by Mrs. H

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@jenniferhunter

@amberheilman I wanted to reach out and tell you that I'm sorry about your dad, and that you will find support here. John Bishop is a great resource on Neuropathy. Right now, you are being affected by the stress from grief, so the best thing is to take care of yourself as best you can. You might want to get a physical therapy evaluation when you're ready to see if they can help with your pain. Sometimes neuropathy is a physical problem that physical therapy can help. Here is a discussion all about myofasial release therapy, and it has helped me a lot. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/ You can find a provider on the MFR website.

I took care of my elderly dad with end stage heart disease, and I too worried about inheriting that. The worst thing I could do would be to stress myself into believing that I would follow the same path. I've made the best choices I can, and worked at learning to control and reduce stress, because that can cause high blood pressure and heart problems, and stress is huge factor in a lot of diseases. You don't have to stay positive right now for everyone else. Take the time you need to process and accept these changes. Your mom is grieving too, but in a different way and also trying to be strong. You are lucky to have a supportive husband. He might look at this all differently, and it might not be the same way that you view your health. I know my husband has always felt like he wished he could do more for me when I was recovering from surgery or an illness. It sounds like you are the one who is always there as a caregiver for everyone else, and maybe that it what is hard now, because you are having trouble being in that role. It's your turn now. It is hard sometimes to accept help and not see it as a negative thing for someone else, but the help is given sincerely. You will always have those conversations with your dad, and you can remember them when you need his comfort.

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Oh my goodness! You have hit the nail on the head. My brother overdosed his graduation night. I found him. I was 12. I was the rock for my parents as they dealt with their own guilt & troubles. I won't get into everything, but high school was awful and that is why I am a high school art teacher of 13years. My goal is to show my students that no matter what they are going through they will survive. through art and a positive attitude, they will grow stronger. I am constantly putting on a brave face. My body is betraying me. I am not sure how to not put so much stress on myself.
I'm sorry. TMI
Thank you for your kind words. I know you are correct. I am grateful for everything &everyone, including this group.

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@johnbishop

Hello @amberheilman, I would like to welcome you to Connect along with @jenniferhunter and other members. I'm sorry for your loss of your father. I know not having someone to talk to about your neuropathy can make you feel all alone. It is pretty awesome to have a husband who is supportive. I think one of the best things that we patients with neuropathy can do is learn as much as we can about our health conditions. I lived with neuropathy for 20+ years before seeking a diagnosis and something to help with the numbness. I have idiopathic small fiber peripheral neuropathy but only have numbness and no pain associated with it so I had to look for alternative treatments as there are no drugs that help with numbness. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@jenniferhunter has given some really good information on Myofascial Release Therapy and it is great discussion to read through. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following where you can meet other members with similar symptoms and learn what they have found helpful for treatments.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

@amberheilman, are you able to share a little more about your neuropathy diagnosis and any treatments you have tried?

John

Jump to this post

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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@amberheilman

Oh my goodness! You have hit the nail on the head. My brother overdosed his graduation night. I found him. I was 12. I was the rock for my parents as they dealt with their own guilt & troubles. I won't get into everything, but high school was awful and that is why I am a high school art teacher of 13years. My goal is to show my students that no matter what they are going through they will survive. through art and a positive attitude, they will grow stronger. I am constantly putting on a brave face. My body is betraying me. I am not sure how to not put so much stress on myself.
I'm sorry. TMI
Thank you for your kind words. I know you are correct. I am grateful for everything &everyone, including this group.

Jump to this post

@amberheilman Welcome to Connect, Mrs. H! I thought you might enjoy the Art for Healing discussion. It sounds to me like you might know something about the magic powers of art work in healing and overcoming adversity. I am like you too in that I am the caregiver and the responsible one for my parents and my dad passed a couple years ago. My parents never saw the reality of their situation and both were disabled and could not manage on their own. Those were the hardest years of my life to be advocating for them and taking care of them when I was in need of spine surgery myself, and as hard as that was, there were also the gifts of time well spent that I will always have with my dad. I still take care of my mom, and she is able to live on her own now. Art is one of my passions too and you can find more on that in this discussion. (I have some pictures on the first page) https://connect.mayoclinic.org/discussion/art-for-healing/

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@jenniferhunter

@amberheilman Welcome to Connect, Mrs. H! I thought you might enjoy the Art for Healing discussion. It sounds to me like you might know something about the magic powers of art work in healing and overcoming adversity. I am like you too in that I am the caregiver and the responsible one for my parents and my dad passed a couple years ago. My parents never saw the reality of their situation and both were disabled and could not manage on their own. Those were the hardest years of my life to be advocating for them and taking care of them when I was in need of spine surgery myself, and as hard as that was, there were also the gifts of time well spent that I will always have with my dad. I still take care of my mom, and she is able to live on her own now. Art is one of my passions too and you can find more on that in this discussion. (I have some pictures on the first page) https://connect.mayoclinic.org/discussion/art-for-healing/

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We might be sisters! I will check it out. Thank you

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Hi, @amberheilman. I also wanted to add my welcome to Mayo Clinic Connect and express my condolences on the death of your father.

I'd like to also bring @grandmar @2011panc and @johnhans @lorirenee1 and @albeit into this conversation to discuss being diagnosed with neuropathy and dealing with its challenges, while feeling that you have too much life to live and struggling to stay positive.

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@lisalucier

Hi, @amberheilman. I also wanted to add my welcome to Mayo Clinic Connect and express my condolences on the death of your father.

I'd like to also bring @grandmar @2011panc and @johnhans @lorirenee1 and @albeit into this conversation to discuss being diagnosed with neuropathy and dealing with its challenges, while feeling that you have too much life to live and struggling to stay positive.

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thank you

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@amberheilman
Welcome to our little part of the world!
I was just diagnosed with neuropathy a short time ago.
I noticed the symptoms in June when I could not move my foot from side to side and I could not lift my toes.
I had cervical surgery about 3 months prior and lumbar surgery about 3 months after.
I mention this because it has been my neurosurgeon who has taken the lead to try to find out the cause.
I've had numerous tests and I've seen way too many docs!!!
Up until a couple of weeks ago, I only had numbness, now I am starting to get pain in my big right toe, who doesn't move on its own any more.
Feeling pain, is suppose to be a good thing, a healing thing!
I walk with a cane to avoid repeated falls.
Tomorrow I will get a brace for my right leg.

This has been just one more thing I've had to deal with regarding my health.
However, now it has impacted my independence.
I can not longer drive, at least until now.
My reflexes in my foot and leg are too slow.
If I have to react quickly, I can't.
For me, this has been one of the most upsetting thing!
I cannot do anything to retrofit my car because it is a leased car.
Right now, patience is the name of the game.

So now I wait and see what the next step.
God only knows will will come next!

Best wishes,
Ronnie (GRANDMAr)

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I feel for you I am turning to alternative methods . I watched interesting documentary called “Heal” maybe you will be inspired like I was . It is on Netflix

Liked by Mrs. H

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@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

Jump to this post

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..

Liked by Mrs. H

REPLY
@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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