Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@margaretob

That light is now 37 with a wife and a child. DIABETIC on meds not INSULIN yet. He doesn't listen to stick to the proper diet.
I worry. Oldest also on meds, is 52…middle 43 no diabetes. It is INHERITED here so we had a warning before it got here. I got the worst of it but am sticking with the PROGRAM of diet, walking, and meds and insulin. SINCE MAY 1995…am 67…..M.

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@margaretob

Diabetes is part of my family history, so I've always lived with that knowledge and have been diligent about the food I eat. My downfall is church potlucks, the desert table. That's one time I backslide. I weigh the same and my waist is the same size as when I was in college. 1968-1972 was a long time ago. I'm afraid our son is heading toward diabetes because he's way overweight. He's 39, and his wife, who's also overweight, is a nurse practitioner. They ought to know better. Our daughter, who just had a baby girl knows she's overweight, though not seriously, and just finished a diet challenge and is closer to a healthy weight and intends to keep it that way.

Four of my five siblings were overweight for much of their adult lives, but the two sisters had gastric bypass surgery and look great, and many of their health issues have disappeared. My third sister was always slim, much like me. She died in her 50s of unknown causes. One brother was nearly destroyed by decades of drug and alcohol abuse, but 5-10 years ago he turned his life around and has been clean and sober, and because of the effect of the years of abuse, he is very disciplined with his eating and has gone from a waist size in the 50s to 34". It's an amazing transformation. My father, and as far as I know, all 4 of my remaining siblings have been treated for neuropathy, but I don't think that theirs progressed as far as mine has. They treated it with Gabapentin – I wish it worked for me. Mine has been intractable, with medications being barely having enough affect to manage the pain at a tolerable level

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@artscaping

Halleluja! Yes, I am very proud of you for many reasons. First, You are able to sift through my dialogue and modify it to your own need to know at the time.
2. Like most of us, you arrived at Connect looking for "the" cure. You have accepted the fact that there is no cure for SFPN at this time, just many choices for quality of life improvements by managing pain.
3. You have learned to live through the frustration of things not quite living up to your expectations. You accept that chasing and expecting totally pain-free outcomes is not possible right now.
4. You are able to get to the bottom of your challenges….e.g. the pain can become more troublesome to handle when the rest of the family jumps up and runs out to experience the day while you stay at home and try to get that sweet spot.
5. Even when your first post of the day conveys that you are struggling a bit, your greetings and digital chats with all of our Connect community members are positive and help reduce anxiety with gentle words of compassion and/or humor.

Keep it up……..I don't have flowers but I always have art. Chris

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@rwinney Rachel , what Chris said! Ditto 😍

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@artscaping

Halleluja! Yes, I am very proud of you for many reasons. First, You are able to sift through my dialogue and modify it to your own need to know at the time.
2. Like most of us, you arrived at Connect looking for "the" cure. You have accepted the fact that there is no cure for SFPN at this time, just many choices for quality of life improvements by managing pain.
3. You have learned to live through the frustration of things not quite living up to your expectations. You accept that chasing and expecting totally pain-free outcomes is not possible right now.
4. You are able to get to the bottom of your challenges….e.g. the pain can become more troublesome to handle when the rest of the family jumps up and runs out to experience the day while you stay at home and try to get that sweet spot.
5. Even when your first post of the day conveys that you are struggling a bit, your greetings and digital chats with all of our Connect community members are positive and help reduce anxiety with gentle words of compassion and/or humor.

Keep it up……..I don't have flowers but I always have art. Chris

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You have brought me to tears…

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@margaretob

I live in HOBOKEN and are on a SENIOR CITIZEN stats, with PERIPHERAL NEUROPATHY torment. Just got over a MASSIVE ATTACK of PAIN. Took two ADVILS prescription GABABENTIN 300 mgs. and hopped around for several hours in PAIN….took my INSULIN after a BOWL OF OATMEAT WITH A LOT OF CINNAMON IN IT AND IT FINALLY CALMED DOWN TO A LOW ROAR. I need to walk for about twenty minutes to spread the inflammation evenly, then it doesn't hurt so much..AM 76…..Margaret O

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It sounds like you work very hard to take care of yourself, @margaretob.

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@rwinney

You have brought me to tears…

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Dear Chris (and fellow Connect supporters) ~

I'd like to elaborate on the importance and timing of your post (Chris). Also, I'd like to share this info so it may help someone else.

The evening you messaged me back was a very difficult and painful one for me which is why you moved me to tears. Not only was your reply kind, sincere and supportive, but it also showed how much you pay attention to each persons needs and conditions in this forum.

I had made poor choices that day. One, I consumed too much sugar and two, I took my THC dose 5 hours apart instead of my usual 6 hours, out of desperation.

I had not been treating myself well by consuming muffins each day leading up, a candy bar the day prior, then on that particular day…a chocolate shake. Call me bone headed but, the last time I got spiteful about my condition and ate a half bag of marshmallows, I paid the price the next morning with nerves firing up beyond the normal misery. So yes, I should have known better.

THC side effects hit me 1 1/2 – 2 hours after consumption. Boy did they hit me with fury that night. I could not move, lift my head or function from severe dizziness, nausea,, dry eyes, dry mouth, disorientation, brain fogg. It was very scary.

During this time, I also was in the mother of all pain flares. More extreme than usual. My guess… sugar. Debilitating pain, spasm, burning fire, cramping, numbness. I felt contorted and was in such a poor state from the THC side effects that I lay there suffering…mentally talking myself through it and focusing on slow, deep breathing. I contemplated going to urgent care (despite my embarrassment) but, decided to persevere and make myself ride it out.

After a total of 4 hours, between pain attacks settling with my next dose of hydrocodone and the THC wearing away,…I came to.
That's when I eventually looked at my phone and saw your reply Chris.

Man oh man did it move me to tears. They say timing is everything and your timing was impeccable! You presented a reflection of my strength that I felt I had just voided from my mistakes. It overwhelmed me in the moment.

My point here is… this physical and mental journey of pain continues to make me (us) learn, grow and test the boundaries of our inner strength. Even though I made wrong choices that day that did not benefit me…I learned from them and I hope others will too. We are all human and all we want is to live comfortably to the best of our abilities with love, support, encouragement and kindness.

Thank you Chris, Jim, Lori Renee, John and many, many others in Connect, from the bottom of my heart, for riding shotgun with me down the incredibly bumpy road. May you all be well this evening and not drinking shakes! (wink, wink)

~Rachel

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@rwinney

Dear Chris (and fellow Connect supporters) ~

I'd like to elaborate on the importance and timing of your post (Chris). Also, I'd like to share this info so it may help someone else.

The evening you messaged me back was a very difficult and painful one for me which is why you moved me to tears. Not only was your reply kind, sincere and supportive, but it also showed how much you pay attention to each persons needs and conditions in this forum.

I had made poor choices that day. One, I consumed too much sugar and two, I took my THC dose 5 hours apart instead of my usual 6 hours, out of desperation.

I had not been treating myself well by consuming muffins each day leading up, a candy bar the day prior, then on that particular day…a chocolate shake. Call me bone headed but, the last time I got spiteful about my condition and ate a half bag of marshmallows, I paid the price the next morning with nerves firing up beyond the normal misery. So yes, I should have known better.

THC side effects hit me 1 1/2 – 2 hours after consumption. Boy did they hit me with fury that night. I could not move, lift my head or function from severe dizziness, nausea,, dry eyes, dry mouth, disorientation, brain fogg. It was very scary.

During this time, I also was in the mother of all pain flares. More extreme than usual. My guess… sugar. Debilitating pain, spasm, burning fire, cramping, numbness. I felt contorted and was in such a poor state from the THC side effects that I lay there suffering…mentally talking myself through it and focusing on slow, deep breathing. I contemplated going to urgent care (despite my embarrassment) but, decided to persevere and make myself ride it out.

After a total of 4 hours, between pain attacks settling with my next dose of hydrocodone and the THC wearing away,…I came to.
That's when I eventually looked at my phone and saw your reply Chris.

Man oh man did it move me to tears. They say timing is everything and your timing was impeccable! You presented a reflection of my strength that I felt I had just voided from my mistakes. It overwhelmed me in the moment.

My point here is… this physical and mental journey of pain continues to make me (us) learn, grow and test the boundaries of our inner strength. Even though I made wrong choices that day that did not benefit me…I learned from them and I hope others will too. We are all human and all we want is to live comfortably to the best of our abilities with love, support, encouragement and kindness.

Thank you Chris, Jim, Lori Renee, John and many, many others in Connect, from the bottom of my heart, for riding shotgun with me down the incredibly bumpy road. May you all be well this evening and not drinking shakes! (wink, wink)

~Rachel

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You, Rachel, and others in the group here, are SO INSPIRING. Without getting too metaphysical I just want to say that those of you living your lives in such a state of ongoing crisis (my wife is dealing with PN not me) I truly believe it is for a reason. God or the universe or however you want to think of who/what is in charge here has some plan. I truly believe this is not for no reason. I am so sorry for the suffering which I see my wife go through as well as what I read in the various forums about living with pain, but all I can say is it is good to see you not lose hope. Although your world may become very very focused on the pain to the exclusion of much that others enjoy and take for granted, I have seen firsthand the strength that comes out of it. So the fact that through all of this you are not giving up Rachel is very inspiring. Best, Hank

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@rwinney

Dear Chris (and fellow Connect supporters) ~

I'd like to elaborate on the importance and timing of your post (Chris). Also, I'd like to share this info so it may help someone else.

The evening you messaged me back was a very difficult and painful one for me which is why you moved me to tears. Not only was your reply kind, sincere and supportive, but it also showed how much you pay attention to each persons needs and conditions in this forum.

I had made poor choices that day. One, I consumed too much sugar and two, I took my THC dose 5 hours apart instead of my usual 6 hours, out of desperation.

I had not been treating myself well by consuming muffins each day leading up, a candy bar the day prior, then on that particular day…a chocolate shake. Call me bone headed but, the last time I got spiteful about my condition and ate a half bag of marshmallows, I paid the price the next morning with nerves firing up beyond the normal misery. So yes, I should have known better.

THC side effects hit me 1 1/2 – 2 hours after consumption. Boy did they hit me with fury that night. I could not move, lift my head or function from severe dizziness, nausea,, dry eyes, dry mouth, disorientation, brain fogg. It was very scary.

During this time, I also was in the mother of all pain flares. More extreme than usual. My guess… sugar. Debilitating pain, spasm, burning fire, cramping, numbness. I felt contorted and was in such a poor state from the THC side effects that I lay there suffering…mentally talking myself through it and focusing on slow, deep breathing. I contemplated going to urgent care (despite my embarrassment) but, decided to persevere and make myself ride it out.

After a total of 4 hours, between pain attacks settling with my next dose of hydrocodone and the THC wearing away,…I came to.
That's when I eventually looked at my phone and saw your reply Chris.

Man oh man did it move me to tears. They say timing is everything and your timing was impeccable! You presented a reflection of my strength that I felt I had just voided from my mistakes. It overwhelmed me in the moment.

My point here is… this physical and mental journey of pain continues to make me (us) learn, grow and test the boundaries of our inner strength. Even though I made wrong choices that day that did not benefit me…I learned from them and I hope others will too. We are all human and all we want is to live comfortably to the best of our abilities with love, support, encouragement and kindness.

Thank you Chris, Jim, Lori Renee, John and many, many others in Connect, from the bottom of my heart, for riding shotgun with me down the incredibly bumpy road. May you all be well this evening and not drinking shakes! (wink, wink)

~Rachel

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I am going to read your post to her when she wakes up this morning (she hates computers -hence why I am on this blog and not she; I do all online research on her behalf).

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@jesfactsmon

You, Rachel, and others in the group here, are SO INSPIRING. Without getting too metaphysical I just want to say that those of you living your lives in such a state of ongoing crisis (my wife is dealing with PN not me) I truly believe it is for a reason. God or the universe or however you want to think of who/what is in charge here has some plan. I truly believe this is not for no reason. I am so sorry for the suffering which I see my wife go through as well as what I read in the various forums about living with pain, but all I can say is it is good to see you not lose hope. Although your world may become very very focused on the pain to the exclusion of much that others enjoy and take for granted, I have seen firsthand the strength that comes out of it. So the fact that through all of this you are not giving up Rachel is very inspiring. Best, Hank

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Hank
Thank you for your comment. It's very heart warming to know you will read my post to your wife. She's a lucky lady! Inspiration goes both ways. Enjoy your day.
Rachel

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@jesfactsmon

I am going to read your post to her when she wakes up this morning (she hates computers -hence why I am on this blog and not she; I do all online research on her behalf).

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Tell your wife about this woman who has severe neuropathic pain since my spinal cord injury in 2012. I was newly married and was still shy about normal bodily functions so it was very embarrassing to have him help me with this. I am in some pain 24/7 but I never give up. I have a spinal cord stimulator that helps a little, but I rely on 600 mg of gabapentin every six hours around the clock. I sometimes have to use ice packs on my legs and hips for the pain. I have learned a lot from other contributions to this site. I have learned to play golf again while strapped into a special gold cart designed for paraplegics (that’s me!). I have learned to live with the severe pain and often just block it out. I know that I will have to be like this until I die, but I always try to look on the bright side. There’s always someone much worse off than me. I saw this when I was in the hospital. There was a man with no arms below his elbow and no legs below his knees. He could not feed himself and could not transfer out of his wheelchair. So, I feel lucky!

9D3488F8-695C-4764-9C52-F617557E136C

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@darlingtondoll

Tell your wife about this woman who has severe neuropathic pain since my spinal cord injury in 2012. I was newly married and was still shy about normal bodily functions so it was very embarrassing to have him help me with this. I am in some pain 24/7 but I never give up. I have a spinal cord stimulator that helps a little, but I rely on 600 mg of gabapentin every six hours around the clock. I sometimes have to use ice packs on my legs and hips for the pain. I have learned a lot from other contributions to this site. I have learned to play golf again while strapped into a special gold cart designed for paraplegics (that’s me!). I have learned to live with the severe pain and often just block it out. I know that I will have to be like this until I die, but I always try to look on the bright side. There’s always someone much worse off than me. I saw this when I was in the hospital. There was a man with no arms below his elbow and no legs below his knees. He could not feed himself and could not transfer out of his wheelchair. So, I feel lucky!

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AMEN!

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@darlingtondoll

Tell your wife about this woman who has severe neuropathic pain since my spinal cord injury in 2012. I was newly married and was still shy about normal bodily functions so it was very embarrassing to have him help me with this. I am in some pain 24/7 but I never give up. I have a spinal cord stimulator that helps a little, but I rely on 600 mg of gabapentin every six hours around the clock. I sometimes have to use ice packs on my legs and hips for the pain. I have learned a lot from other contributions to this site. I have learned to play golf again while strapped into a special gold cart designed for paraplegics (that’s me!). I have learned to live with the severe pain and often just block it out. I know that I will have to be like this until I die, but I always try to look on the bright side. There’s always someone much worse off than me. I saw this when I was in the hospital. There was a man with no arms below his elbow and no legs below his knees. He could not feed himself and could not transfer out of his wheelchair. So, I feel lucky!

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I already did tell her about you, after you posted about being paralyzed and in pain 24/7. She (and I) were mind boggled. How amazing though that you can still golf! Makes us happy to know this.

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@jesfactsmon

I already did tell her about you, after you posted about being paralyzed and in pain 24/7. She (and I) were mind boggled. How amazing though that you can still golf! Makes us happy to know this.

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And my last name is Smiley. No kidding! Everyone says that I smile all the time and laugh a lot too. You have to look on the bright side. I don’t like to watch sad movies and I turn off the tv a lot if the programs are not uplifting.

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Hello, I just joined a hour ago and already came across your post. I was dignosed a week ago. My biggest problem is, I left my doctors office with nothing but the dignoses she gave me.
I'm completely lost because I have no idea where to start. So I'm Thankful I stumbled across your post. I may not have any help for you but you're more than welcome to chat if needed. Sending prayers along

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@adrianna143

Hello, I just joined a hour ago and already came across your post. I was dignosed a week ago. My biggest problem is, I left my doctors office with nothing but the dignoses she gave me.
I'm completely lost because I have no idea where to start. So I'm Thankful I stumbled across your post. I may not have any help for you but you're more than welcome to chat if needed. Sending prayers along

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@adrianna143 Welcome to our group we aren't Dr.s but are good listeners and helpers all on here are suffering in one way or another we here at Connect try to help as we can . Im glad you found this group . If you can will you write us as to how you feel what are your symptoms ? We all have different symptoms ,diseases and can give you examples of what we do to help ourselves We,d love to get to know you and help if we can. God bless you

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@adrianna143

Hello, I just joined a hour ago and already came across your post. I was dignosed a week ago. My biggest problem is, I left my doctors office with nothing but the dignoses she gave me.
I'm completely lost because I have no idea where to start. So I'm Thankful I stumbled across your post. I may not have any help for you but you're more than welcome to chat if needed. Sending prayers along

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Hello and welcome to Connect. I feel bad that you are here but know its the best place for you to learn and receive support and compassion.

It's like reading my very own words from last year when I was diagnosed with Small Fiber Poly Neuropathy. Although, quite sure it began a few years prior…took a while to get to the bottom of it all

My Dr. diagnosed me and sent me on my way. Unfortunately, nothing has changed in that department. I have to ask everything and suggest medications etc…
He recommends procedures and blood testing or sends me to the next specialist needed. It seems that's the way it works which is why Mayo Connect is so important.

Wishing you a happy day. Please feel free to ask any questions, anytime.

Rachel

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