Ideas for pain relief from Small Fiber Neuropathy (SFN)

I need a lot of supplies and added to the clothes, well, I need a suitcase. After looking at various cruise itineraries, I found that “I have been there and done that”. I went to Machu Picchu when they were still rebuilding the site and my husband and I had the place to ourselves for the whole day! I have seen Stonehenge and been everywhere I have always wanted to go. So if I went on a cruise, I probably would not get off the ship. I went to the top of the crow’s nest on a big sailing ship near Sardinia for my 60th birthday.

Hi Rachel. I know how you feel about the changes in your life. Some people mark the time by important events in their life - like a marriage or the birth of a child. I mark time by an event that happened on April 27, 2012. My whole life changed when I became a paraplegic. I had been newly married, just 10 months, and suddenly I could no longer move at all. I could not sit up to feed myself, I was incontinent, and I could not even dress myself. I was hospitalized for six weeks. Because I was bedridden, I had multiple pulmonary emboli which were life threatening. I remember the doctor in the emergency room asking me for the telephone number of my next of kin. I told him to hang a bag or two of heparin and that I would be okay. It worked like a charm. But I still couldn’t take care of myself and I needed a lot of therapy to teach me how to live in a wheelchair. The burning, stabbing pain was there particularly in my spinal cord where the injury happened and also in my legs and hips. I had horrible leg spasms and my legs would go flying up in the air. I had no control of my body. I just wanted to get better. I truly believed that I would walk one day. That never happened, but with five years of intensive therapy, I can walk for a very short distance in a walker, probably only about 20 yards. I did discover how strong I was in spirit. I never gave up and even though I am wheelchair bound, I can take care of myself now. I miss being able to travel though. I am restricted by the pain and the difficulty of going more than two hours in the car. I really want to take a trip for the next birthday. I have looked into taking a cruise, but after seeing what happened to the passengers on the cruise ships with that virus from China, I think that I will forgo any trips on a ship. There are some train trips, but I don’t know how I will travel with my wheelchair and a suitcase. I need two hands to get around in the chair so how do I handle that suitcase? I will figure out something, I hope. My husband hates to travel so I will go alone when I figure out where I want to go. I need to carry a lot of supplies because of my incontinence. That is the worst part of being paralyzed. I hate the pain, but I have learned how to live with it. Because I am now in kidney failure, I have to pay a lot of attention to my bathroom issues. I am also on a strict kidney diet, so eating out is a big problem. Okay! I have unloaded today. We all need to do that sometimes and this forum seems to be the right place. I’m not depressed, just frustrated. I miss being able to walk in my house. I hate cooking from a wheelchair. I drop things all the time. Yesterday when I was taking a big jar of rice out of the pantry and I dropped it on the floor and there was rice all over the kitchen. Oh well, we all have myriad problems associated with our neuropathy. I feel better now.🤪

@birdierobin Yes under reply there is a heart clickk on it that is a like that's what I clicked on for your post hope this helped

YOU are an amazing woman and remind me alot of my Mom. She was blessed to walk again after a motorcycle accident that broke both her legs. She spent much time in a wheel chair over decades but fortunate to have not been paralyzed.

You politely snapped me out of my pity party and proved that life challenges come in a multitude of examples and degrees. Thank you!

~Rachel

P.S. My Mom was/is a daredevil too and I love that about her!

Thanks. Yeah, I am one tough cookie.🍪

I am so glad your mom is OK with that was a horrendous accident - both ilegs oh my. God bless her. I have been a daredevil all my life and that makes what’s happening to me very hard it’s hard to go from 100 miles an hour to zero overnight basically

I am so glad your mom is OK with that was a horrendous accident - both ilegs oh my. God bless her. I have been a daredevil all my life and that makes what’s happening to me very hard it’s hard to go from 100 miles an hour to zero overnight basically

Exactly. I believe I read that you used to fly. My mother and her significant other, who is a pilot, flew a twin engine 2 seater expensive air craft to Europe for delivery. She journaled every day. They had to wear full body jump suits in case they went down over the ocean. Amazing trip. It's very sad when things can't happen for us like they used to. Guess it just means there must be more creative ways for adventure like @darlingtondoll is proving.

PS...that 100 to zero is me too. Hard to slam breaks on like that and get a handle on your new forced existence overnight. Takes time. Some more time than others and that"s ok.

Hi Rachel. I know how you feel about the changes in your life. Some people mark the time by important events in their life - like a marriage or the birth of a child. I mark time by an event that happened on April 27, 2012. My whole life changed when I became a paraplegic. I had been newly married, just 10 months, and suddenly I could no longer move at all. I could not sit up to feed myself, I was incontinent, and I could not even dress myself. I was hospitalized for six weeks. Because I was bedridden, I had multiple pulmonary emboli which were life threatening. I remember the doctor in the emergency room asking me for the telephone number of my next of kin. I told him to hang a bag or two of heparin and that I would be okay. It worked like a charm. But I still couldn’t take care of myself and I needed a lot of therapy to teach me how to live in a wheelchair. The burning, stabbing pain was there particularly in my spinal cord where the injury happened and also in my legs and hips. I had horrible leg spasms and my legs would go flying up in the air. I had no control of my body. I just wanted to get better. I truly believed that I would walk one day. That never happened, but with five years of intensive therapy, I can walk for a very short distance in a walker, probably only about 20 yards. I did discover how strong I was in spirit. I never gave up and even though I am wheelchair bound, I can take care of myself now. I miss being able to travel though. I am restricted by the pain and the difficulty of going more than two hours in the car. I really want to take a trip for the next birthday. I have looked into taking a cruise, but after seeing what happened to the passengers on the cruise ships with that virus from China, I think that I will forgo any trips on a ship. There are some train trips, but I don’t know how I will travel with my wheelchair and a suitcase. I need two hands to get around in the chair so how do I handle that suitcase? I will figure out something, I hope. My husband hates to travel so I will go alone when I figure out where I want to go. I need to carry a lot of supplies because of my incontinence. That is the worst part of being paralyzed. I hate the pain, but I have learned how to live with it. Because I am now in kidney failure, I have to pay a lot of attention to my bathroom issues. I am also on a strict kidney diet, so eating out is a big problem. Okay! I have unloaded today. We all need to do that sometimes and this forum seems to be the right place. I’m not depressed, just frustrated. I miss being able to walk in my house. I hate cooking from a wheelchair. I drop things all the time. Yesterday when I was taking a big jar of rice out of the pantry and I dropped it on the floor and there was rice all over the kitchen. Oh well, we all have myriad problems associated with our neuropathy. I feel better now.🤪