[evandtwins]

I have had peripheral neuropathy since 1/2/94 when I was 24 years old. I had recently graduated from college and had my whole life ahead of me. Then, on a plane ride home, my legs began to burn and this tortuous saga of 19 years and counting started.

I was diagnosed with mild postganglionic autonomic neuropathy in August 1994 at Mayo. Well, it was mild until about a year ago. Since then, my life has been a living hell. My wife was diagnosed with breast cancer last year, and my heath is falling apart. I have three beautiful boys under ten, so I cannot leave this realm, but every day hurts to stay too. Most days, I pray that God might come take me so that I didn't have to do it myself. I wonder every morning when I wake whether I will be able to get out of bed, get to work, and make it home again. When I do, I feel like I've been put through a sausage grinder. I fear for my innocent beautiful children and what might occur should I not be able to provide for them. The anxiety from a new job (taken a year ago, not coincidentally) is awful. I can't sleep through the night ever because I feel overwhelmed. I don't know what to hang my hat on to sustain me and provide hope.

And it is hard to find anyone to empathize, because you don't really know what neuropathy is like unless you actually have it. So mostly people tire of me talking about my pain even as my suffering gets worse.

I pray that someday they will find a medication that truly makes a difference, because everything thus far has been a small band aid on a gaping wound, so to speak. While remarkable advances are made in other fields, not nearly enough has been done in our field, and I pray that we will band together as one voice and demand action from our government officials. Far too many people are suffering from a disease that not only do too few even know about, but most that do think you must be exaggerating.

I grow weary from the fear of my future and the incessant anxiety. May God's strength sustain me until hopefully I return home tonight.

Be well.

[Sallysblooms]

I am glad you are here and I am sorry. There is a lot of support here.

[Stacy2012]

As I read your words tears started to flow down my face with each passing word. Tears for you, your family, me, and all those who live with pain. With the passing of tears comes new hope and prayer for all of us. Thank you for sharing your heartfelt words as it reminds me that I am not the center of my universe.

I am praying for you, me and all of us right now for brighter days filled with hope and peace.

[ChaucerFan]

I too am glad that you've joined this board, and not just for your sake. Please know that the power of your words has moved others to admire your strength and to offer whatever support we can. The only tangible thing I can think of is a contribution, in your family's honor, to support neuropathy research. Of course I don't know your names, but that's not important. I'll just describe your suffering and your spirit.

[Idiopathic PN]

Eva,

Yes, there is a part of your story in in all of us. Some many not be as bad or may not be as good, but the sufferings, fears and anxiety are common.

The other day, I was telling my hubby how frustrating can be that with all the modern science, there is no meaningful discovery that can help us alleviate our pain. This is a reality that is difficult to accept but we just have to live with it. Most people, especially those who are not really close to us, will get tired of asking us how we feel. NO ONE WILL EVER UNDERSTAND THE KIND OF PAIN WE GO THROUGH EXCEPT THOSE WHO ALSO SUFFERS THE SAME THING.

[St George 2013]

Dear evandtwins......it's taken me 5 months to finally get a diagnosis of advanced small fiber neuropathy and that took me asking for the biopsy myself. I'm so new to this (happened a month after chemo finished but also have diabetes). And you are right......I feel my family gets tired too of me talking about my pain so when they ask how I am now I just say "fine"

Can I ask what medications you are on now and what you've tried in the past to get some relief ? I'm just beginning this journey and the pain is unbearable throughout the day. It ebbs and flows all day long. My husband had doubts about whether this was real or not (we've been married almost 34 years) but the biopsy convinced him that all he sees is real for me.

When I'm at my worst I try to remember there is someone worse off than me. It's HARD, HARD to do but I try. Just look at your children's faces and know it will get better. You've come to the right place. I just signed up today but have been reading threads since Dec 2012.

Please let us know about your meds so someone can give you suggestions. And what type of dr's have you seen about this ?

From Georgia: overcast with a chance of meatballs !

[evandtwins]

Originally Posted by Stacy2012

As I read your words tears started to flow down my face with each passing word. Tears for you, your family, me, and all those who live with pain. With the passing of tears comes new hope and prayer for all of us. Thank you for sharing your heartfelt words as it reminds me that I am not the center of my universe.

I am praying for you, me and all of us right now for brighter days filled with hope and peace.

Stacy,

Thanks for your kind message. I think a lot about the support you and others have provided and it is so meaningful to me. There are so many people here like us that are suffering, and it makes me so angry that more progress has not been made in terms of diagnosis and treatment. In my case, I have had this neuropathy for 20 years, and yet I am "idiopathic" in terms of diagnosis. They did do an skin biopsy that came back abnormal as I knew it would. Yet still no answer for what is causing it. I think about what cell phones and computers looked like 20 years ago, and it is amazing how much technology has changed, yet in that time period precious little has changed in terms of diagnosis, medications and other treatments for neuropathy. I pray that one day neuropathy will emerge, as breast cancer has, in terms of public awareness and funding, that we will emerge as a united voice to tell our government officials that this epidemic needs to be properly funded. I will only speak for myself in saying that, despite my best efforts to remain positive, this disease has destroyed a part of me. I am not as effective in my career as I would otherwise be, I am not the husband that I fully want to be, and most importantly I am not the father that I aspire to be, all because I suffer from intractable pain every day of my life.

Peace be with you, and let's all continue to do all that we can to support our cause and bring awareness to it, not only for our sake, but for the many others that are out there today that don't know it, but one day will suffer from neuropathy.

Jason

[Stacy2012]

I agree Jason, I often think the same thing. We can clone animals but not treat this better??? More awareness is needed for funding I guess.

Do you have twins?? I have identical twin boys. One of the best blessings in my life.

[zorro1]

Originally Posted by Stacy2012

I agree Jason, I often think the same thing. We can clone animals but not treat this better??? More awareness is needed for funding I guess.

Do you have twins?? I have identical twin boys. One of the best blessings in my life.

This is a silent and invisible disease that will never get public support, just think how hard it is to convince your friends and family let alone a stranger. Without public support and a lot of feet stomping, okay well maybe no stomping support will be minimal

[ChaucerFan]

Agreed about the substance of your message, Zorro1, and thanks for the grin.