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?

@johnbishop

Thank you for the kind words!

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John, you really are…
THE MAN!

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@rwinney

John, you really are…
THE MAN!

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Now I’m really blushing 🙂 @rwinney

Liked by rwinney

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@mlross4508

Hi.
I’m also looking for PN relief. I’m not sure how to get a group or talk time started, but I can suggest you research Mayofascial Release Therapy, or MFR. I’ve had bad neuropathy in my feet from a couple of failed back surgeries and developed CRPS which started this pain.
I’ve had 4 MFR treatments and it has given me a new lease on my life with 75-85 percent reduction in my pain. My pain started to go away after the first treatment!
Then you do self treatments on your own to help heal what ails. You have to put time in to get positive results.
It might not work for everyone but when I read about this on this discussion group, I soon tried the therapy and I go once a week and feel better after each session.
Good luck with this and your other suggestions on this post.

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@mlross4508, Wow…you are an MFR hero. Thanks for trusting our guidance and for reporting back to us that the MFR treatments have improved your neuropathic feet. Keep it up. Chris

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Generic Lyrica (Pregabalin) Capsules and solution have recently been approved.
25 mg, 50 mg, 75 mg, 100 mg, 150 mg, 200 mg, 225 mg, 300 mg

Oral Solution
20 mg/mL

Jake

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@jakedduck1

Generic Lyrica (Pregabalin) Capsules and solution have recently been approved.
25 mg, 50 mg, 75 mg, 100 mg, 150 mg, 200 mg, 225 mg, 300 mg

Oral Solution
20 mg/mL

Jake

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What pharmacy has it?

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@etipton9756

Cynthia; I'm looking for a MD or specialist who can advise my doctor about the validity of Gabapetin for PN. Could you provide his/her name and contact info?

Eddie Tipton

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Hello Etipton:
What is a MD specialist?
Best regards,
Vradi

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I have 3 questions:
Which is the test I need for determinate my Magnesium levels?
Do you know a trustworthy seller of Fibro Malic and Epsom salts? Amazon sells bouth but I am not sure.
I have vitamin supplement: Multi Women. Energy + antioxidants. Manufactured by: Alfa Vitamins Laboratories. Do you know it?
Good day and thank you.
Vradi

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@confused1955

I think I'm in here somewhere but my diagnosis has changed and I don't know if I'm in the right group. I finally received a second opinion and unfortunately it's worse. I have Complex Regional Pain Syndrome CRPS. Nicknamed the suicide disease as the on the long scale it's 42 out of 50. I have read reports that attempts and success range at almost 70%. So far no favorable prognosis. Same deal Gabapentin and pain killers. I've been promised I would be kept comfortable but no one knows how to do that. I live 24 7 in my dark room because the light affects my head. Is there anyone in this group that has had this disease for over 2 years as I believe we would have more in common. After 2 years your not eligible for testing anymore because after 2 years there is no chance of a cure. You are too alive to be helped by dying with Dignity because I suffer with my hands 24 7 it feels like they are in boiling oil. Because I'm not eligible I have to suffer forever. When your reading and they say rarely children get this but they do and it's vicious on our little warriors. HELP

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I am a 43 yrs old female. Diagnosed 9 years ago when they called it Reflex Sympathetic Dystrophy Syndrome. They new VERY little about it. So I put it by the way side. Suddenly 2 yrs ago it hit me like a freight train. This pic is what my hands do during just a typical flare up. You are not alone. Feel free to talk to me anytime!!! I need support as well. Mayo clinic in Jacksonville, FL has a CRPS specialist on staff. They can do all the diagnostic testing and any treatment there. But they require a $5000.00 retainer, not including lodging. I live in Atlanta, GA and I'm gonna go out on a limb here and say….my name is Dana. Feel free to private message me. I am truly just trying to figure out where to even start with all this. And I have a 6 yr old son and 12 yr old daughter. But Im someone who understands what you are going through. Day or night. God bless!! Dana

1206180616~2

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Hello and nice to meet you Dana, I'm Rachel.
I'm so sorry for the pain you endure. It sounds like the inspiration in your life must be your children! They have the ability to make us stronger and keep us focused even through the misery. I hope this message finds you with a smile on your face, if only for a moment. Know that you are not alone.

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@dstewart318

I am a 43 yrs old female. Diagnosed 9 years ago when they called it Reflex Sympathetic Dystrophy Syndrome. They new VERY little about it. So I put it by the way side. Suddenly 2 yrs ago it hit me like a freight train. This pic is what my hands do during just a typical flare up. You are not alone. Feel free to talk to me anytime!!! I need support as well. Mayo clinic in Jacksonville, FL has a CRPS specialist on staff. They can do all the diagnostic testing and any treatment there. But they require a $5000.00 retainer, not including lodging. I live in Atlanta, GA and I'm gonna go out on a limb here and say….my name is Dana. Feel free to private message me. I am truly just trying to figure out where to even start with all this. And I have a 6 yr old son and 12 yr old daughter. But Im someone who understands what you are going through. Day or night. God bless!! Dana

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Hi @dstewart318, I would like to add my welcome to Connect along with @rwinney and other members. I don't know much about Reflex Sympathetic Dystrophy Syndrome other than it is a subdivision of Complex Regional Pain Syndrome – CRPS type I (reflex sympathetic dystrophy). I did find some information about it on the National Organization for Rare Disorders database here:
https://rarediseases.org/rare-diseases/reflex-sympathetic-dystrophy-syndrome/
I also found some other information that may be helpful if you haven't already seen it.

NIH – Complex Regional Pain Syndrome Fact Sheet
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet#How%20is%20CRPS%20treated?

Have you found any treatments that help you when it flares up?

Liked by mlross4508

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@johnbishop

Hi @dstewart318, I would like to add my welcome to Connect along with @rwinney and other members. I don't know much about Reflex Sympathetic Dystrophy Syndrome other than it is a subdivision of Complex Regional Pain Syndrome – CRPS type I (reflex sympathetic dystrophy). I did find some information about it on the National Organization for Rare Disorders database here:
https://rarediseases.org/rare-diseases/reflex-sympathetic-dystrophy-syndrome/
I also found some other information that may be helpful if you haven't already seen it.

NIH – Complex Regional Pain Syndrome Fact Sheet
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet#How%20is%20CRPS%20treated?

Have you found any treatments that help you when it flares up?

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Hi John,
Thanks for the links to the rare disorder/ disease of CRPS. I’ve been dealing with it since a spinal fusion at the L5-S1 from a fall that occurred in 2011. I wasn’t diagnosed until 2015 as my Neurologist would not have an answer or offer suggestions on how to deal with the pain associated with this disease. Failed back surgery. But you will never hear of that spoken FROM someone in the medical field. I can’t have anything touch my big R toe, as pain level goes to a 7-8 just being still. Blowing on it hurts as an example.
Since joining the group, everyone, even those who are in a more difficult position than I’m in, have all been very positive and I do appreciate the different options that people have brought forth to try to make our lives a little more livable !!
My life has taken a turn for the better since I was introduced to MFR , and have been seeing a therapist weekly and have noticed the changes- in a good way.
So again, thanks John for your hard work, great researching, and a supporter of all of us who are having difficulty in their lives. You make it a little more bearable.
Mitch

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Hello everyone! Sometimes my SFN (small fiber neuropathy) effects my left foot more than my right. Does anyone else have that experience?

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@sherryw I have a question rather than answer, I.m sorry. How do you know what kind of neuropathy you have. I was told peripheral neuropathy, that's it. Will the neurologist know? I am not sure mine would, but I will ask. I do know I hurt. Both legs and feet with alot of cramping right now. Is that normal. At this point I don't know what is from what or is this something new.

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@sherryw I don’t know what kind of neuropathy I have although I know mine was chemo induced. One foot always bothers me more than the other and one hand is always worse than the other although neither hand is bad.

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@summertime4 @sherryw and others wanting to know how the different neuropathies are diagnosed.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.
https://www.youtube.com/watch?v=3FrQ7Glvgok

Liked by rwinney, sherryw

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