1. < Neuropathy

still working with small fiber neuropathy

Posted by swartzki @swartzki, Jan 13, 2020

Just wondering if any of you out there with SFN are still able to work. The fatigue and flu-like feeling I have are crippling,but I'm trying to keep my job. Do any of you experience the flu-like feeling? Is there anything that can help?

Interested in more discussions like this? Go to the Neuropathy Support Group.

swartzki | @swartzki | Feb 20, 2020
In reply to @jimhd "Hi, Kim @swartzki I was thinking about you in my prayer time this evening and wonder..." + (show)
@jimhd

Hi, Kim @swartzki I was thinking about you in my prayer time this evening and wonder how life is going. You have some significant challenges to face, and I promised to be praying for you. My wife and I enjoy our acres in the country. We lease the pasture to our neighbors for their cattle and horses. I was noticing that there are 5 horses out there right now. We like getting to look at the animals without all of the work that goes with caring for them. I hope you find a way to continue enjoying your horse and home until the time is right to move to a new chapter in your life.

Blessings to you - and to those grandchildren.

Jim

Jump to this post

Hey, Jim ! I’m just seeing this ! Thank you so much for praying for me. I’ve been struggling with anxiety and horrible depression but God is real and He is with us. I appreciate your comments about the horses and my grandchildren. I did ride last weekend. I’m seeing my grandson tomorrow and my granddaughter in two weeks. Still working. I’m going to a Christian counselor and to Bible study. I’m trying to accept the idea that I can live with this condition. I thought fir the last three years that I was dying . The hair loss is so hard but I’m starting to believe that God does have plans for me here and work to do for Him. You are just amazing. I love hearing about your piano playing. I grew up in a tiny Baptist church, so I love hymns on the piano. This life is short at best. I hope we can live with joy for each other and for our Savior until we see Him. I know the darkness will creep back in. Let’s stay in touch.

REPLY
3 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Feb 20, 2020
In reply to @swartzki "Hey, Jim ! I’m just seeing this ! Thank you so much for praying for me...." + (show)
@swartzki

Hey, Jim ! I’m just seeing this ! Thank you so much for praying for me. I’ve been struggling with anxiety and horrible depression but God is real and He is with us. I appreciate your comments about the horses and my grandchildren. I did ride last weekend. I’m seeing my grandson tomorrow and my granddaughter in two weeks. Still working. I’m going to a Christian counselor and to Bible study. I’m trying to accept the idea that I can live with this condition. I thought fir the last three years that I was dying . The hair loss is so hard but I’m starting to believe that God does have plans for me here and work to do for Him. You are just amazing. I love hearing about your piano playing. I grew up in a tiny Baptist church, so I love hymns on the piano. This life is short at best. I hope we can live with joy for each other and for our Savior until we see Him. I know the darkness will creep back in. Let’s stay in touch.

Jump to this post

@swartzki

Hi Kim. Because of where we live, there's a very high turnover of counselors. My last one was really good, and it was hard to see him go. I hadn't gone to another since he left last June, but I found a man who accepts Medicare 3 weeks ago, and I think he'll be a good fit. I have to drive farther, but maybe he'll stay around longer. I started therapy in 2006, and my new one is #13. I went for 18 months without one a couple of years ago, so that's 13 therapists in 13 years. It's hard to have to start nearly from scratch with each therapist. I have to relive my life story all over again and again and again..

Gotta go.

Jim

REPLY
1 reply
lioness | @lioness | Feb 20, 2020

@jimhd Hi Jim reading about the therapist you have seen it's hard when our Dr,s therapist move on then we have to start over. Did you ever think of recording your record then if needed add to it ,just a suggestion

REPLY
Robin | @birdierobin | Feb 20, 2020
In reply to @swartzki "Hey, Jim ! I’m just seeing this ! Thank you so much for praying for me...." + (show)
@swartzki

Hey, Jim ! I’m just seeing this ! Thank you so much for praying for me. I’ve been struggling with anxiety and horrible depression but God is real and He is with us. I appreciate your comments about the horses and my grandchildren. I did ride last weekend. I’m seeing my grandson tomorrow and my granddaughter in two weeks. Still working. I’m going to a Christian counselor and to Bible study. I’m trying to accept the idea that I can live with this condition. I thought fir the last three years that I was dying . The hair loss is so hard but I’m starting to believe that God does have plans for me here and work to do for Him. You are just amazing. I love hearing about your piano playing. I grew up in a tiny Baptist church, so I love hymns on the piano. This life is short at best. I hope we can live with joy for each other and for our Savior until we see Him. I know the darkness will creep back in. Let’s stay in touch.

Jump to this post

Kim & Jim : Hope you don’t mind me but in your conversation but it’s really nice. Kim - I’m struggling with my hair loss too and a lot of pretty much vain things. I don’t know what our purposes when the world seems the focus around our troubles and our pain but I’m sure there is one. Maybe it’s just to witness here. God bless you both

REPLY
Lisa Lucier | @lisalucier | Feb 21, 2020
In reply to @wiseowl "I ask the same question,my hair has thinned out,but, I believe it is from B.P.Meds. and..." + (show)
@wiseowl

I ask the same question,my hair has thinned out,but, I believe it is from B.P.Meds. and hydralazine is listed as a cause of P.N.,but I got mine from 2 years of antibiotics for an undiagnosed MRSA infection and I seen a old program that mentioned a guy having all my symptoms from either a MRI or Cat-scan ,I had both during my time and they said it spread the MRSA through out his body,he had to have his blood cleansed in hospital for 2 yr.s! I do not remember him burning like me,I burn all over and hydralazine makes it worse! I' m beginning to think the spironolactone is doing the same thing!

Jump to this post

Hi, @wiseowl - wondering how you are doing and if the burning you were feeling has subsided at all?

REPLY
swartzki | @swartzki | Feb 21, 2020
In reply to @jimhd "@swartzki Hi Kim. Because of where we live, there's a very high turnover of counselors. My..." + (show)
@jimhd

@swartzki

Hi Kim. Because of where we live, there's a very high turnover of counselors. My last one was really good, and it was hard to see him go. I hadn't gone to another since he left last June, but I found a man who accepts Medicare 3 weeks ago, and I think he'll be a good fit. I have to drive farther, but maybe he'll stay around longer. I started therapy in 2006, and my new one is #13. I went for 18 months without one a couple of years ago, so that's 13 therapists in 13 years. It's hard to have to start nearly from scratch with each therapist. I have to relive my life story all over again and again and again..

Gotta go.

Jim

Jump to this post

Must be frustrating to spend so much time repeating your story instead of getting to the heart of that day's need. That hour goes by fast! I've had the crazy idea of trying hypnosis to combat this anxiety. Before I awaken fully each morning, I feel the terror coming on. I want to jump out of my skin. Mostly, it's from facing the baldness but also it's from fear that I will have that fatigue that makes getting up at 5 AM to go to work so tough. I wonder if anybody in our group has tried hypnosis for the depression. I guess it's far fetched, but anything that drives out the dark thoughts I would try.

REPLY
1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Feb 21, 2020
In reply to @swartzki "Must be frustrating to spend so much time repeating your story instead of getting to the..." + (show)
@swartzki

Must be frustrating to spend so much time repeating your story instead of getting to the heart of that day's need. That hour goes by fast! I've had the crazy idea of trying hypnosis to combat this anxiety. Before I awaken fully each morning, I feel the terror coming on. I want to jump out of my skin. Mostly, it's from facing the baldness but also it's from fear that I will have that fatigue that makes getting up at 5 AM to go to work so tough. I wonder if anybody in our group has tried hypnosis for the depression. I guess it's far fetched, but anything that drives out the dark thoughts I would try.

Jump to this post

@swartzki I'm thinking that if you were to start a new discussion in the mental health group, you could well find others with the same interest.

Jim

REPLY
katcollins | @katcollins | Feb 17, 2023
In reply to @swartzki "I'm guessing the hair loss is neuropathy because my scalp tingles, and it feels like bugs..." + (show)
@swartzki

I'm guessing the hair loss is neuropathy because my scalp tingles, and it feels like bugs crawling around. Awful. The hair loss was one of the first problems I had, and the dermatologist was the first medical expert to suggest neuropathy. I thought I couldn't live without my hair. So hard. I really had beautiful hair. It defined me. Guess God taught me a lesson there. My preacher said to be,"You'd' be surprised what you can do." You are so sweet, Lori. I sure hope this new med gives you some relief from that pain. I'm so happy to hear the breast cancer surgery was a success. Thanks, Chris, I'm learning to be happy any day when I'm not in physical misery. Today is good. Iceblue,I agree that is weird about the tramadol. I sure hope you find what works. To all of you, I tried medical marijuana too, but it caused extreme anxiety. Admittedly, I didn't try all of the options. Maybe that would work for some of you.

Jump to this post

I have the constant itchy scalp as well. I’ve experienced some hair thinning over the last year. I have not been diagnosed as of yet but the doctors suspect SFN and Fibromyalgia.
Best of luck to you all!
Kat

REPLY
cgs | @cgs | Feb 18, 2023
In reply to @swartzki "Hey, Jim ! I’m just seeing this ! Thank you so much for praying for me...." + (show)
@swartzki

Hey, Jim ! I’m just seeing this ! Thank you so much for praying for me. I’ve been struggling with anxiety and horrible depression but God is real and He is with us. I appreciate your comments about the horses and my grandchildren. I did ride last weekend. I’m seeing my grandson tomorrow and my granddaughter in two weeks. Still working. I’m going to a Christian counselor and to Bible study. I’m trying to accept the idea that I can live with this condition. I thought fir the last three years that I was dying . The hair loss is so hard but I’m starting to believe that God does have plans for me here and work to do for Him. You are just amazing. I love hearing about your piano playing. I grew up in a tiny Baptist church, so I love hymns on the piano. This life is short at best. I hope we can live with joy for each other and for our Savior until we see Him. I know the darkness will creep back in. Let’s stay in touch.

Jump to this post

Thank you for so much for your testimony about the Lord helping you in your life without him I wouldn't be able to go through all this I don't think without turning to alcohol or drugs like I did before he saved me I have neuropathy in my feet, Leg nerve in pain two degenerative discs,sciatica in both legs, I have an addiction to coffee, it does help with the achiness and stiffness when I get up but it seems to be affecting my digestive tract, lower in my belt area. I Have Diabetes Type 2 and the Lord is helping me with my eating to get my A1C down from a 6.4 to a 6.1 which is good I've been eating a lot of avocados and blueberries and special bread it's called Ezekiel 4:9 I believe. The Lord gives me opportunities to witness the Gospel 1 Corinthians 15:1-3 the people everyday I sure gospels of John from the Pocket Testament League I get tracks from the Fellowship tract League in Lebanon Ohio close to where I live. We moved here about 3 years ago and I'm still visiting different churches in the area there there isn't a church like the one that I attended in Greenville, before we moved here our grandson died and we moved here to be close to our daughter we live in a small house behind her I also just had a thyroid biopsy I'm waiting on the results on that and I need to get a stress test and a echocardiogram for my heart all these things have been recommended by doctors God bless you and keep looking to the Lord he will see you through and give you Joy

REPLY
bailey11 | @bailey11 | Apr 3, 2023
In reply to @swartzki "Also, all of my thick, blonde hair fell out. I'm the only person I know of..." + (show)
@swartzki

Also, all of my thick, blonde hair fell out. I'm the only person I know of whose lost her hair because of neuropathy. It's terrible, but I would be happy bald if I could eliminate the exhaustion, headaches, and weakness.

Jump to this post

I’m so sorry to read about your symptoms. I also have SFN w autonomic dysfunction and had to stop working. The brain fog, cognitive symptoms, and orthostatic hypotension really impacted my daily life. I’ve had a few relapses and lost a lot of hair. Mine used to be thick so you are not the only one. I lost weight due to the stomach issues w delayed gastric emptying so I thought my hair loss was due to the weight loss and loss of nutrients? Not sure. Have you tried drinking Ensure or Boost to see if your hair grows back?

REPLY
View MoreView Less
Please sign in or register to post a reply.