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?

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@phoenix0509

@jimhd , Jim: I am continually amazed how you forge ahead despite your difficulties. I am glad to hear that your wife is there to support , encourage and remind you of your role in the lives of others as you play the piano and lead the Sunday evening service. Your inner resolve is a testament to God working in your life and showing others that despite overwhelming challenges you persevere and seek to bring comfort to yourself and other like minded people with your faith and love of music. Keep the Diesel F250 ready for the more challenging trips. Be prepared as you travel on those snowy roads ,just as you are preparing yourself for the seemingly endless battles of self survival. Jim, you also serve as an inspiration to me and others on Mayo Connect. In deepest regards. David

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Jim
Just can't help but comment here. I am not a religious person however, appreciate those who are. I believe what @phoenix0509 said is very true about you Jim. I also am continually inspired by you and grateful for your contributions to connect.

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@phoenix0509

@jimhd , Jim: I am continually amazed how you forge ahead despite your difficulties. I am glad to hear that your wife is there to support , encourage and remind you of your role in the lives of others as you play the piano and lead the Sunday evening service. Your inner resolve is a testament to God working in your life and showing others that despite overwhelming challenges you persevere and seek to bring comfort to yourself and other like minded people with your faith and love of music. Keep the Diesel F250 ready for the more challenging trips. Be prepared as you travel on those snowy roads ,just as you are preparing yourself for the seemingly endless battles of self survival. Jim, you also serve as an inspiration to me and others on Mayo Connect. In deepest regards. David

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@swartzki Thank you for your encouraging words, David.

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@lorirenee1

@sswartzki I have not tried IGIV. Know nothing about it. Just started Low Dose Naltrexone, which is helping my foot pain. I have never heard of hair falling out from neuropathy. Are you sure it is from this? Are you on any meds that could do this, or any diet changes that could effect hair? You are the first person I have heard about who has this from neuropathy. I do understand though, that it is the least of your problems. Lori

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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!

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@swartzki

I seem to have started calling you David, and I doubt that's correct. Sorry. I see that's Phoenix' name, not yours.

Did you have a good day today? I guess it probably depends on how you define a good day. Good day for me is to do more than sit in my recliner. Being retired can be a dangerous thing because of the tendency to say I'll do it tomorrow. At least that's true for me.

I practiced the piano today!!! I haven't been, and felt guilty every time I walk past it. It felt good to sit down and play all of the major scales to warm up. I worked on several jazz pieces arrangements by George Shearing. I'll get my hands moving on those songs before I get into my favorite romantic era composer, Mozart, and some 20th century composers - Eric Satie and Claude Debussy and some Gershwin. I know that playing is good for my arthritis in my fingers. That's the extent of exercises that I want to do. I know others wouldn't agree, but different exercises for different people for different reasons. My BA is in music with a focus on piano performance. I wish I could still play as well as I did in my 20s. But I play well enough at church so I don't embarrass myself.

Jim

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@jimhd

@swartzki

I seem to have started calling you David, and I doubt that's correct. Sorry. I see that's Phoenix' name, not yours.

Did you have a good day today? I guess it probably depends on how you define a good day. Good day for me is to do more than sit in my recliner. Being retired can be a dangerous thing because of the tendency to say I'll do it tomorrow. At least that's true for me.

I practiced the piano today!!! I haven't been, and felt guilty every time I walk past it. It felt good to sit down and play all of the major scales to warm up. I worked on several jazz pieces arrangements by George Shearing. I'll get my hands moving on those songs before I get into my favorite romantic era composer, Mozart, and some 20th century composers - Eric Satie and Claude Debussy and some Gershwin. I know that playing is good for my arthritis in my fingers. That's the extent of exercises that I want to do. I know others wouldn't agree, but different exercises for different people for different reasons. My BA is in music with a focus on piano performance. I wish I could still play as well as I did in my 20s. But I play well enough at church so I don't embarrass myself.

Jim

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@jimhd , Jim. I think music is as much for soothing your soul as it is for your arthritis. you are correct, @phoenix0509 is David. Music takes you to a dimension that is less devoid of pain. Glad you were able to practice today. Best, David

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@jimhd

@swartzki

I seem to have started calling you David, and I doubt that's correct. Sorry. I see that's Phoenix' name, not yours.

Did you have a good day today? I guess it probably depends on how you define a good day. Good day for me is to do more than sit in my recliner. Being retired can be a dangerous thing because of the tendency to say I'll do it tomorrow. At least that's true for me.

I practiced the piano today!!! I haven't been, and felt guilty every time I walk past it. It felt good to sit down and play all of the major scales to warm up. I worked on several jazz pieces arrangements by George Shearing. I'll get my hands moving on those songs before I get into my favorite romantic era composer, Mozart, and some 20th century composers - Eric Satie and Claude Debussy and some Gershwin. I know that playing is good for my arthritis in my fingers. That's the extent of exercises that I want to do. I know others wouldn't agree, but different exercises for different people for different reasons. My BA is in music with a focus on piano performance. I wish I could still play as well as I did in my 20s. But I play well enough at church so I don't embarrass myself.

Jim

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@jimhd I use to sing solo,s in church all the time we did cantata,s 2xa year. If we could get together we would have a great time with music Have you read Cayce then? I saw you gave me a like in my reply At night here on Daystar I listen to reflection so soothing the music, background and scripture the have put together .

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@jimhd

@swartzki

I seem to have started calling you David, and I doubt that's correct. Sorry. I see that's Phoenix' name, not yours.

Did you have a good day today? I guess it probably depends on how you define a good day. Good day for me is to do more than sit in my recliner. Being retired can be a dangerous thing because of the tendency to say I'll do it tomorrow. At least that's true for me.

I practiced the piano today!!! I haven't been, and felt guilty every time I walk past it. It felt good to sit down and play all of the major scales to warm up. I worked on several jazz pieces arrangements by George Shearing. I'll get my hands moving on those songs before I get into my favorite romantic era composer, Mozart, and some 20th century composers - Eric Satie and Claude Debussy and some Gershwin. I know that playing is good for my arthritis in my fingers. That's the extent of exercises that I want to do. I know others wouldn't agree, but different exercises for different people for different reasons. My BA is in music with a focus on piano performance. I wish I could still play as well as I did in my 20s. But I play well enough at church so I don't embarrass myself.

Jim

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Hey, Jim. My name is Kim. I am so thrilled that you are playing. I remember your wife reminding you how much the church enjoys it too. I love piano music. (Our church has gone to almost a full band. UGH!) You are doing such a great service for the Lord. I hope you feel good about that. And I'm happy it is bringing you personal joy! I'm trying to navigate this whole thing. I have to convince myself and can live with this. I hope I can find ways to serve as well.

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@jimhd

@swartzki

I seem to have started calling you David, and I doubt that's correct. Sorry. I see that's Phoenix' name, not yours.

Did you have a good day today? I guess it probably depends on how you define a good day. Good day for me is to do more than sit in my recliner. Being retired can be a dangerous thing because of the tendency to say I'll do it tomorrow. At least that's true for me.

I practiced the piano today!!! I haven't been, and felt guilty every time I walk past it. It felt good to sit down and play all of the major scales to warm up. I worked on several jazz pieces arrangements by George Shearing. I'll get my hands moving on those songs before I get into my favorite romantic era composer, Mozart, and some 20th century composers - Eric Satie and Claude Debussy and some Gershwin. I know that playing is good for my arthritis in my fingers. That's the extent of exercises that I want to do. I know others wouldn't agree, but different exercises for different people for different reasons. My BA is in music with a focus on piano performance. I wish I could still play as well as I did in my 20s. But I play well enough at church so I don't embarrass myself.

Jim

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Good for you Jim! Great to hear. Keep on playing that piano.

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@swartzki

Hey, Jim. My name is Kim. I am so thrilled that you are playing. I remember your wife reminding you how much the church enjoys it too. I love piano music. (Our church has gone to almost a full band. UGH!) You are doing such a great service for the Lord. I hope you feel good about that. And I'm happy it is bringing you personal joy! I'm trying to navigate this whole thing. I have to convince myself and can live with this. I hope I can find ways to serve as well.

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@jimhd, @swartzki, @rwinney and others. Not sure if you've seen this piano duo but I have been fortunate enough to have seen someone playing the piano in the Rochester Mayo Clinic Atrium many times when I've been early for appointments.

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