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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 - more information is available on the Foundation for Peripheral Neuropathy website here:
-- https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
-- https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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Replies to "Greetings all my fellow Connect members suffering from PN, I'm hoping today finds your pain not..."

Hi John, Don't know if you remember me, but due to a serious scooter accident on Nov 10th, Colleen suggested she withhold connect as I had no accesses to a computer, etc. Not sure where to enter this again as I've been thru a lot and have come forth with some
interesting things. Such as now I have a neuropathy in my right foot, a possible treatment for vertigo, and pain in the area of a knee replacement where a plate from this femur fracture was attached, DEEP wound treatment (took over 4 months with daily dressing,. changes, etc, You get the idea. Wonder if I should give you the details of the accident and my world since along with other situations such as vertigo added to my recovery. And no, I am far from having recovered. From Nov until mid April, I was getting a nurse daily to change the dressing along with OT and PT 5 to 6 days a week! Now I am finally back living independently in my cottage within a retirement community and back with my physical therapist since my Dx of myotonic dystrophy from Mayo back in Dec 2013..
gailfaith

Hi @gailfaith, I do remember you. I’m sorry to hear about your scooter accident in November. The great thing about Connect is that you can post anywhere. I sometimes do not see a post unless I am tagged in the post with my Connect username @johnbishop — tagging a member with their username sends them an email notification that someone has tagged them in a post and also gives them a link back to the post. I happened to see your post because it showed up in the Connect Daily Digest and said Hi John.

I’m happy to hear you are recovering but I’m sure it’s not an easy thing for you. If you are comfortable sharing more and have questions you are trying to get answered, it would be a good thing as others reading may also be able to relate and share suggestions or help answer any questions you may have.

@gailfaith now that you are back living independently after your accident, have you had to do any adjusting to your lifestyle?

John

@johnbishop, gailfailth here again. Might as well start from the beginning but will try to make it short!!!!!! On the evening of Nov 10th, I went out on my new scoter( 3-wheeled one) to get the mail. I keep the key for the scooter along with the key to the mailbox on lanyard and I have to take the key out of the scooter to reach the mailbox. I saw there was a lot of stuff in the box, so I stood up to be able to put it all in the basket behind my seat. But I apparently put the key back in the ignition, and holding onto the steering yoke for support, I must have hit the accelerator. SCOOTERS DON'T HAVE SAFETYS, AND THE SCOOTER TOOK OFF AND KNOCKED ME DOWN. Fortunately, I had my Western hat on as I used to do sheep herding demo's with my dog.. I landed on my back and I was fully aware that when my head hit the concrete, the brim of the hat resulted in a very soft bounce to my head. Then I saw my right foot up by my right ear and my R knee two feet to my right. I don't remember any pain at that time! I yelled for help, but the cottages here are very soundproof. so I reached for my cell and called for help. When the nurse arrived she sat next to me holding my knee, and a neighbor saw us and put blankets on both of us. I heard her give directions to maintenance to put my scoter back in my garage. When the first ambulance arrived, I heard them call for a second ambulance. Since the driver of the first ambulance not only took me to the hospital but brought me back from the hospital several days later and then to the doctor's office, so we sorta became friends. I asked if I was screaming in pain and he said no, "you were orchestrating what was going on around! you!" He said that when they took the blanket off me, he thought my leg was wrapped around my neck. I heard them call for the second ambulance. Apparently
they called for the fire dept. Some said the iv is in and then I remember arriving at the ER. and later saying I would have surgery the next day, but that didn't happed for another 3 days. I was told my femur was broken. Later the nurse told me my leg was dislocated from my hip, but apparently that returned to the socket as nothing showed in the x-rays. But even now, sometimes I have pain when I sit too long as apparently the tissues in that area were stretched, etc . Back in the nursing home division of my retirement community, they told me they saw notes that I had a wound on the back of my leg, but I had no knowledge of that. Seems the scooter fender gouged out a piece of my leg just below the calf muscle and above the ankle, so it damaged nerves, blood vessels, tendons maybe, etc. I am grateful to the Lord that no infection occurred..I know several people who have had legs amputated due to leg infections.. I can walk with a walker but the first few steps after I had been sitting for any length of time but within a few steps and be fully weight bearing and my gait appears normal, but though I have no pain but it feels like anything but normal. Before the accident I walked indoors with no canes, etc, but outside I used two canes for safety. The plate along side the femur goes inside the prosthetic knee and only at night do I have pain in the knee. Oh yes, it was a spiral fracture going from alongside the knee half up the femur to the hip.. Because the surgeon who did both of my knee replacements I plan see him to get his thoughts on this surgeon's handiwork. The current surgeon says if it still gives me discomfort in a year, he will remove the plate, but I just might let my knee surgeon do that!.

Will later send another Connect, re vertigo apparent solutions, etc,.gailfaith

@gailfaith -- OUCH! There goes scooters from my list of things to try. In my younger days I had a Honda 125 cc dirt bike that I took out in the desert when I lived in California but that was enough for me. From the description of the accident it sounds like you were put through the wringer.

John

@johnbishop WIshful thinking when you state" you WERE put thru the wringer".'. I am still going thru the aftermaths and trying my best to be able to walk like a normal human. I still use my scooter, but I make sure the key is no where near where it gets plugged into the "ignition". Wonder why they never put a "safety" on scooters. They do on lawn mowers. I understand you have to be sitting on the seat for it to move anywhere.

OK, change of subject while I am writing to you but I'll leave it up to you to put is in the proper category! ..I was in the nursing home initially from Nov 14 until Jan 18 ( If those dates are off, it is only by a day or two!) On Jan 21. I was sound asleep around 3 AM when I just turned over in the bed and I had my first and severe attack of vertigo. I felt as though the brain was floating untethered within my skull. That woke me up! Never had any vertigo previously. . I went to my neurologist and to my ENT and both just basically put it on the back burned and rescheduled me in another couple of months.. i mentioned it in an email to a friend and she said that she too gets vertigo, but heard that vertigo can be related to a low carb diet. and though they haven 't gone away completely, she is defiantly better. As I am prediabetic , I eat a lo carb diet. No bread, white potatoes, or pasta.. So I added one slice of whole wheat bread and some wheat pretzels per day.. It started to appear to get better. But now that I am back in my cottage and back with my regular PT, (who I have been seeing on a weekly basis since I was at Mayo in Dec,2013 .who happens to have a PT on staff who specializes in treating vertigo. By the time I got an apt I was definitely better and indeed no matter what he did with me, it did not cause any vertigo. That PT never heard about the relationship with vertigo and a lo carb died! It sure is worth a trial if anyone suffers similarly., gailfaith

Thanks @gailfaith I don't have any experience or knowledge when it comes to vertigo. I did some searching and found the following article on the National Institutes of Health site.

Is There a Possible Association between Dietary Habits and Benign Paroxysmal Positional Vertigo in the Elderly? The Importance of Diet and Counseling -- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4593901/

Also found Low Carb Diet Side Effects on a Ketogenic Diet Resource site here which lists dizzyness as one of the side affects:
-- https://www.ketogenic-diet-resource.com/low-carb-diet-side-effects.html

John

Hi Gailfaith .... Colleen gave me your post to read, as I also have had a nasty fall almost now 3 weeks ago. But, yours was far worse than mine .... I can't imagine the pain you are enduring. The management here takes care of outside maintenance very poorly and I fell due to a broken walkway from my building with a metal piece, about 5" x 2" protruding from it. Well, my heel got caught on the metal and I flew .... I hit the concrete pad that holds the electrical system on my left side,my head bounced on the concrete and up and hit the metal strips on the metal box. I've had trouble adjusting to this move anyhow (from MD to VA), and I think this really opened the water works. I just laid there and cried in pain. I did not want to move, and I knew I had been knocked out briefly. Now this is a low income apartment complex, and yet not one person came to help me. I just wanted to sleep. I finally rolled off the concrete pad, and managed to get up using my right arm and leg. I came in the house, upset, hurting, dizzy, and nauseus. I laid down and fell asleep which I know is totally wrong with a possible concussion, but I was not even thinking concussion. The next day, my whole body hurt, especially the left side on which I landed .... I slept, drank water, went to the bathroom, and that was it. Finally the following day I went to the doctor, was immediately diagnosed with a concussion, and severe bone and soft tissue injury. They x-rayed my whole left side and my back and it didn't appear that anything was broken, but they were going to send me for an MRI which would find hairline fractures, but they also told me not to drive. Hmmmmm ..... so I was to get there how? I saw the doctor 2 more times, taking a cab, was put on muscle relaxers (which were worthless). My whole left side and head just ached. I'm finally doing better, but am wearing a brace on my elbow, still hurt but it's slowly getting less, and continue to have side effects from the concussion. The doctor told me that internal soft tissue injury can take a long while to totally heal and that I just have to tough it out, along with the effects of the concussion.
So, here we both are, but I keep thinking ..... at least I'm alive. I do use a cane. You take care of yourself friend.
abby

Hello @gailfaith - I'm sure you have already checked out any meds prescribed to you. I have been dealing with vertigo for a couple years, and on the prescriptions I take, the labels on the bottles clearly read "may cause dizziness"!!! That is on Gabapentin, Tramadol and Requip bottles, which I take all 3, every day, for neuropathy, restless leg and pain. I've discussed the issue with my dr and I'm trying to get off those meds, but it's nearly impossible. Good luck to you - I know it's so good just to be back in your own cottage - and am amazed that you had the courage to get back on your scooter!!

Hi @barbarn. Did you note that just increasing my daily consumption of carbs, stopped the vertigo! I am prediabetic, so I severely limited my eating of carbs. Hope that works for you also. @gailfaith

Well, I can't imagine not having one person come to help you when you fell!!! Are you in senior housing? or, maybe you're not even a senior...