Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

I'm sorry. Y'all come here for support, not my garbage thoughts. Keep up the fight.

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Morning, what is sfn

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@wilcy

Morning, what is sfn

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Sfn stands for small fiber neuropathy

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Guess that’s what I have! Have had shots, back surgery, pills etc! About to have stimulator wires placed in back! Also tried Curcumin, cbd, medical marijuana! Very bad feet neuropathy!

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@swartzki

Well, skin biopsy is positive for sfn. Now what? My husband is not supportive. He told me yesterday he plans to look out for himself, and he's really good at that. He has stolen thousands of dollars from me in the last ten years. So I'm looking at disability, divorce, financial ruin, and let's not forget for extra fun–baldness. I don't have one person to advise me. I have a beautiful home on 3 acres with dogs and a horse. I don't know how to begin to get rid of my beloved horse, clean out my house, sell it, leave my job, pay my mooching husband off. Suicide seems much more logical. I have two grown daughters, but they don't acknowledge this and they have their own lives to live. I have two gorgeous grand children that I want more time with. I'm still working, so my inclination is to just keep getting up and going in until I have a heart attack or get fired.

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@swartzki, I'm really sorry to hear that your husband is not supportive. That's on him and not you. The fact that you are here looking for answers and learning as much as you can about your small fiber neuropathy condition is a good thing. The more you can learn, the better chance you have of finding a treatment or therapy that works for you. Although small fiber neuropathy (SFN) is serious, it is not (IMHO) the end of the world. Hoping you are able to take it one day at a time, one step at a time, learning as much as you can and find something that will help your symptoms.

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I also have cervical as well as lumbar spinal stenosis. My sfn is idiopathic which means the underlying cause is not known. I suspect that spinal stenosis may be the culprit

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I also have lumbar spinal stenosis! Have tried everything except stimulator wires in back! Just wasted $60 on cbd oil!

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@nukhan and @wilcy, have you thought about alternative types of therapy to help with your pain symptoms? There is another discussion which other members have found helpful here:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Liked by rwinney

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@wilcy

I also have lumbar spinal stenosis! Have tried everything except stimulator wires in back! Just wasted $60 on cbd oil!

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Have you tried cold laser therapy? i have been using it and it has made a world of difference, I can even sleep all night through without waking up with the burning pain. I bought mine at Amazon for $129. and I am so glad that i did. 2 of my friends bought one too and they are experiencing great results too. My brother in law uses it for his shoulder and getting relief too. The good thing is with Amazon is you can return it if you don't like it. Good luck with whatever you choose. Neurapathy is a miserable thing to have.

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@swartzki

I'm sorry. Y'all come here for support, not my garbage thoughts. Keep up the fight.

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Not true. It goes both ways. Here for you.

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@rwinney

Not true. It goes both ways. Here for you.

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I do not know why someone would try to bully you. You are in pain and you are seeking help, you seem like a sweet person. Do NOT listen to some idiot, report them to the moderator. How dare they do that. We are here to help each other not mock or bully. Good luck in your quest. I am finding relief and would be glad to tell you all about it, if you are interested.

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@maryv449

Have you tried cold laser therapy? i have been using it and it has made a world of difference, I can even sleep all night through without waking up with the burning pain. I bought mine at Amazon for $129. and I am so glad that i did. 2 of my friends bought one too and they are experiencing great results too. My brother in law uses it for his shoulder and getting relief too. The good thing is with Amazon is you can return it if you don't like it. Good luck with whatever you choose. Neurapathy is a miserable thing to have.

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Tks, am cking out

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@swartzki

Well, skin biopsy is positive for sfn. Now what? My husband is not supportive. He told me yesterday he plans to look out for himself, and he's really good at that. He has stolen thousands of dollars from me in the last ten years. So I'm looking at disability, divorce, financial ruin, and let's not forget for extra fun–baldness. I don't have one person to advise me. I have a beautiful home on 3 acres with dogs and a horse. I don't know how to begin to get rid of my beloved horse, clean out my house, sell it, leave my job, pay my mooching husband off. Suicide seems much more logical. I have two grown daughters, but they don't acknowledge this and they have their own lives to live. I have two gorgeous grand children that I want more time with. I'm still working, so my inclination is to just keep getting up and going in until I have a heart attack or get fired.

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@swartzki I am feeling your pain. It is an awful situation you are in. It is both physical and emotional. Please find a doctor who can help you. Pain from neuropathy is bad and often leaves us feeling vulnerable. It sounds like your husband (hopefully x very soon) feeds on that. While you seek a doctor also seek a GOOD LAWYER. Do not give up what you have and worked so hard for. Emotional pain triggers physical pain. Please do not give up.

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@swartzki

I'm sorry. Y'all come here for support, not my garbage thoughts. Keep up the fight.

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@swartzki

I'm sorry that you're putting up with your husband's narcissistic behavior. I find it offensive and I've never met him. Has he always been this way? What you describe is spouse abuse, and you shouldn't have to go on being his target. Have you talked with a counselor about this?

Have you done anything to protect your money? Any ideas how you can do that?

No apology is needed. Support goes both ways. Sometimes we can give it and sometimes we need to ask for and accept gift of compassionate care. You have many supporters here.

I would suggest that you give serious thought to an escape plan. I don't know what that would look like, but you are worth the effort to get out from under his bullying. I promise to pray for you.

Jim

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@johnbishop

Hello @margaretob, welcome to Mayo Clinic Connect. I know it must be hard not being able to sleep because of the leg cramps. Hoping you can find some answers or suggestions from other members. I have occasionally had leg cramps at night but it's always due to not drinking enough water for me. Here is another discussion that you may want to read through and learn what has helped other members:

> Groups > Sleep Health > Restless Leg Syndrome
https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/

Here's what Mayo Clinic has to say about leg cramps https://www.mayoclinic.org/diseases-conditions/muscle-cramp/symptoms-causes/syc-20350820

Can you let us know how your appointment with the neuropathic doctor goes? Hopefully you will get some answers.

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No appointment, Doctor does not take my insurance. Back to the CLINIC tomorrow if I can move my legs. I hate going to the emergency room for this pain. I am stretching and trying to walk, the GABAPENTIN 300 mg is not helping yet. How long does it take to kick in? M.

Liked by Leonard

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