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!
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.
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.
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.
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
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
@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
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
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.
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, my wife said this regarding your post of yesterday:
.
Rachel, Hank just read to me your post. I understand and sympathize with your dilemma. I believe chronic pain offers an opportunity for "any" weakness in your body to flare and thrive. Even though I know my suffering will increase when I have a drink or eat something containing sugar -- sometimes you just need a "vacation", a diversion from pain. So don't be too hard on yourself. Everyone needs an escape from chronic pain. I find no help with aspirin or any other pain killers. I am allergic to them all. Gabapentin gave me hope but then I began hallucinating, had balance and vertigo problems, my tinnitus worsened, I gained 10 pounds and I couldn't think.
.
My coping support comes from an electric fan on my feet day and night. Not being in any temp over 65 degrees summer or winter. An infrared lamp on my feet and cutting sugar out of my diet except for piece of pie or cake on Christmas or Thanksgiving. I really look forward to one or two mixed drinks a week as tolerated. This is a journey of constant search for what works for you. Hank has been my search engine! By the way, sometimes I get a little relief with soaking my feet in hot water then put them in front of the fan to cool off quickly. I think it confuses the nerves.
Rachel, my wife said this regarding your post of yesterday:
.
Rachel, Hank just read to me your post. I understand and sympathize with your dilemma. I believe chronic pain offers an opportunity for "any" weakness in your body to flare and thrive. Even though I know my suffering will increase when I have a drink or eat something containing sugar -- sometimes you just need a "vacation", a diversion from pain. So don't be too hard on yourself. Everyone needs an escape from chronic pain. I find no help with aspirin or any other pain killers. I am allergic to them all. Gabapentin gave me hope but then I began hallucinating, had balance and vertigo problems, my tinnitus worsened, I gained 10 pounds and I couldn't think.
.
My coping support comes from an electric fan on my feet day and night. Not being in any temp over 65 degrees summer or winter. An infrared lamp on my feet and cutting sugar out of my diet except for piece of pie or cake on Christmas or Thanksgiving. I really look forward to one or two mixed drinks a week as tolerated. This is a journey of constant search for what works for you. Hank has been my search engine! By the way, sometimes I get a little relief with soaking my feet in hot water then put them in front of the fan to cool off quickly. I think it confuses the nerves.
Aww, this is sweet. So glad you wrote back! Thank you for your words of wisdom and support. I hear you though. I just told my husband the other day that I can't believe...I'm a person who does not drink, smoke, drug...the only thing that would be a so called vice for me would be occasional sugar. Self deprivation is also not healthy. So, CHEERS! Me with my occasional milkshake and you with your cocktail. 😊
Thank you @colleenyoung. I am looking for answers to fight this without using the recommendation of my neurologist to be treated with IV Solumedrol steroids for what he claims will slow the progression. He claims that then after 2 years, I will start to notice some either improvement or at least the slowing of the disease. Am only 58 yrs old and I started having the numbness in my left calf on the outside of my leg when it began. It started as just a small area about the size of a quarter. It was the strangest thing because it was just numb all of a sudden. That was in 2011. Now there's numbness in both heels and parts of my feet and toes. I've started having more tingling in my fingers and hands lately and two weeks ago started occupational therapy for the fact that I'm always dropping things.
I used to be on 900 mg of gabapentin 3 x a day! I told my neurologist that I wanted to wean off of it because since I'd started it 2 1/2 yrs prior, it had contributed to 40 lb weight gain which I want to lose and I didn't want to be on so much medication. I have fibromyalgia too and it did help with that pain so I kept taking it. I had asked my Dr if I would have to be on it for the rest of life and he had made it sound like I had no choice! He says "this is your new norm!".
So I've been off of it now for a week and I am hoping to our find something natural for pain. The neuropathy is only the numbness and tingling, but the pain from Fibro, Osteoarthritis and oh forgot to mention, pelvic floor disfuntion.
So my main mission is to fight, but also in my journey if it helps others to fight too, that will be a good thing.
I am thankful to find this Mayo Clinic Connect for whatever help is out there by sharing of information. Thank you to you and the other mentors. May God bless you!
<3 Darlia
I am the same age as you are. My neurologist initially recommended the IV Solu-Medrol but I didn't want to take it because of its tendency to cause weight gain and I'm already overweight. So he started me on the fgfr3 infusions that I get it home by a home infusion nurse the four days a month every month. I think that it is helping a little bit stop. Enough to give me some hope. I've only had four treatments. I take 1800 mg of Gabapentin three times a day, hydrocodone twice a day, and morphine once a day along with some other medications that are supposed to help with nerve pain. It also helps if you can rub Diclofenac sodium gel on the spots that burn. That seems to give me just a little bit of relief sometimes.
Aww, this is sweet. So glad you wrote back! Thank you for your words of wisdom and support. I hear you though. I just told my husband the other day that I can't believe...I'm a person who does not drink, smoke, drug...the only thing that would be a so called vice for me would be occasional sugar. Self deprivation is also not healthy. So, CHEERS! Me with my occasional milkshake and you with your cocktail. 😊
I have been dealing with chronic neck and back pain, and severe, painful neuropathy in my feet, legs, hands, and arms. I live in central PA and have been trying to find a good, caring, comprehensive pain management doctor/group, with no success. Can anyone recommend a good pain management group in Pennsylvania? I am willing to drive to any place in the state to get relief.
YES I ...got gabapentin 300 mgs one am. one p.m. and one at NIGHT...got METANX is new and untried by many, flushes out the veins with
b vitamins that most people reject. Only two weeks so far, less pain, some at waking...like I said only two weeks, Nuerologist says it takes a few
more weeks to see if anything works permanently. Had an MRI of the spine, ex rays of the hips, etc. so far only this helps...
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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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Hug
4 ReactionsAnd 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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Helpful -
Hug
5 ReactionsHello, 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
-
Like -
Helpful -
Hug
2 Reactions@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
-
Like -
Helpful -
Hug
2 ReactionsHello 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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Helpful -
Hug
3 ReactionsRachel, my wife said this regarding your post of yesterday:
.
Rachel, Hank just read to me your post. I understand and sympathize with your dilemma. I believe chronic pain offers an opportunity for "any" weakness in your body to flare and thrive. Even though I know my suffering will increase when I have a drink or eat something containing sugar -- sometimes you just need a "vacation", a diversion from pain. So don't be too hard on yourself. Everyone needs an escape from chronic pain. I find no help with aspirin or any other pain killers. I am allergic to them all. Gabapentin gave me hope but then I began hallucinating, had balance and vertigo problems, my tinnitus worsened, I gained 10 pounds and I couldn't think.
.
My coping support comes from an electric fan on my feet day and night. Not being in any temp over 65 degrees summer or winter. An infrared lamp on my feet and cutting sugar out of my diet except for piece of pie or cake on Christmas or Thanksgiving. I really look forward to one or two mixed drinks a week as tolerated. This is a journey of constant search for what works for you. Hank has been my search engine! By the way, sometimes I get a little relief with soaking my feet in hot water then put them in front of the fan to cool off quickly. I think it confuses the nerves.
-
Like -
Helpful -
Hug
1 ReactionAww, this is sweet. So glad you wrote back! Thank you for your words of wisdom and support. I hear you though. I just told my husband the other day that I can't believe...I'm a person who does not drink, smoke, drug...the only thing that would be a so called vice for me would be occasional sugar. Self deprivation is also not healthy. So, CHEERS! Me with my occasional milkshake and you with your cocktail. 😊
-
Like -
Helpful -
Hug
3 ReactionsI am the same age as you are. My neurologist initially recommended the IV Solu-Medrol but I didn't want to take it because of its tendency to cause weight gain and I'm already overweight. So he started me on the fgfr3 infusions that I get it home by a home infusion nurse the four days a month every month. I think that it is helping a little bit stop. Enough to give me some hope. I've only had four treatments. I take 1800 mg of Gabapentin three times a day, hydrocodone twice a day, and morphine once a day along with some other medications that are supposed to help with nerve pain. It also helps if you can rub Diclofenac sodium gel on the spots that burn. That seems to give me just a little bit of relief sometimes.
-
Like -
Helpful -
Hug
1 ReactionI have been dealing with chronic neck and back pain, and severe, painful neuropathy in my feet, legs, hands, and arms. I live in central PA and have been trying to find a good, caring, comprehensive pain management doctor/group, with no success. Can anyone recommend a good pain management group in Pennsylvania? I am willing to drive to any place in the state to get relief.
YES I ...got gabapentin 300 mgs one am. one p.m. and one at NIGHT...got METANX is new and untried by many, flushes out the veins with
b vitamins that most people reject. Only two weeks so far, less pain, some at waking...like I said only two weeks, Nuerologist says it takes a few
more weeks to see if anything works permanently. Had an MRI of the spine, ex rays of the hips, etc. so far only this helps...
-
Like -
Helpful -
Hug
1 Reaction