I have been to many neurologists and cardiologists over the past 5 years in my home state, Hawaii, also in Washington State, California, and next will be in Arizona, trying to find a way to slow the progression of this peripheral neuropathy and some ominous changes in my heart and other organs. Now both arms are in braces for carpal tunnel syndrome and walking is no longer possible due to the lack of feeling in both legs. The latest doctor was the first to test my Kappa and Lambda light chains (along with protein in urine, and other related tests) and it appears to be amyloidosis. However, I won't know for sure until I get to the Mayo Clinic and have the hematology tests and biopsies done. If you are having a problem with PN that goes beyond RLS, have you asked your neurologist about checking on your free serum light chains?
I have been to many neurologists and cardiologists over the past 5 years in my home state, Hawaii, also in Washington State, California, and next will be in Arizona, trying to find a way to slow the progression of this peripheral neuropathy and some ominous changes in my heart and other organs. Now both arms are in braces for carpal tunnel syndrome and walking is no longer possible due to the lack of feeling in both legs. The latest doctor was the first to test my Kappa and Lambda light chains (along with protein in urine, and other related tests) and it appears to be amyloidosis. However, I won't know for sure until I get to the Mayo Clinic and have the hematology tests and biopsies done. If you are having a problem with PN that goes beyond RLS, have you asked your neurologist about checking on your free serum light chains?
These braces are like fingerless gloves that loop over the thumb, cover the palm of the hand, wrist, and about half way to the elbow. Hard base to keep the wrists straight combined with three adjustable velcro straps to keep the brace in place. Like trying to do anything with boxing gloves on. My caregiver massages in the kush creme on hands, knuckles, and wrists each day and then straps these things on me. The ointment kills the pain. I take the braces off for a few minutes at a time to be able to use my PC, but then back on again. The doctor insists I wear them 24 hours a day! She sent me to a specialist to have them fitted. Imagine trying to sleep with those things on - it's not easy. Also not easy to control my wheelchair with only the thumb and forefinger to use on the controls.The pain (without the creme) runs from the palms of my hands up past my elbows. I apologize the the long whine. It's just that this is the first time I have found a message board where I can meet others who have this disease. I went to the Amyloidosis Organization conference last weekend and discovered that most of the others there had not yet reached the point in the progression to have carpal tunnel syndrome and most were still ambulatory enough not to be in a wheelchair yet,
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Medical marijuana has given me an almost pain free life after years of doctors putting me on opioids. I get the CBD oil capsules which is NOT hallucinogenic at all. I take one each morning with breakfast. And I got a jar of the ointment to massage any 'hot spots' that occur. When I get that sharp pain in my leg or shoulder, I rub it in and the pain is gone in 10 minutes.
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
I am dealing with neuropathy in my feet and finger tips. I take lyrica daily. Have a problem wearing shoes. My neuropathy came from chemo treatment. Would like to know if anyone can recommend help.
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Hello @user_ch1df4426, when you have peripheral neuropathy it's really important to take care of your feet because you can't feel them. You probably already know this but just in case there is more information on the following Mayo Clinic page: http://www.mayoclinic.org/diseases-conditions/diabetes/expert-blog/peripheral-neuropathy/bgp-20056528
I wear socks during the day and at night which helps if I step on something that injures the foot...then I can tell it by the socks. Also, I try to wear shoes that have plenty of toe room which seems to help. Hoping others can jump in if they have some stories to share.
While I don't have chemo induced neuropathy and I do have small fiber peripheral neuropathy with no pain, only the numbness. I take some over the counter natural supplements and vitamins that have helped me. I found it in a neuropathy support group on Facebook. Others in the group that also had chemo induced neuropathy have shared that it has enabled them to get off pain medication once they had been on the supplements for a few months. When trying alternative treatments you should always have a discussion with your doctor first. You can read my story from an earlier post here: https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=13af2ed380
John
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
I have been wearing socks day and night because my feet hurt if they have contact with shoes or bedding, and I never walk without slippers or shoes, and I'm learning which of my shoes I can walk around stores in, and which ones I can't. I'm really thankful for my handicap placard, as it saves me a lot of steps.
When I sit in the recliner, I have to use a footstool so my feet don't just hang off - I'm tall - because that makes them hurt.
As a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which is the CAUSE of my peripheral neuropathy now I am told.
Also have Gastroparesis because of this ANTIBODY. Neurotically my stomach nerves don't work properly and it takes my stomach 5-6 x longer to digest
I posted a post titled FGFR3 ANTIBODY, for those interested, please go there and leave me your comments.
Just knowing the CAUSE now starts to feel a little better.
As a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which is the CAUSE of my peripheral neuropathy now I am told.
Also have Gastroparesis because of this ANTIBODY. Neurotically my stomach nerves don't work properly and it takes my stomach 5-6 x longer to digest
I posted a post titled FGFR3 ANTIBODY, for those interested, please go there and leave me your comments.
Just knowing the CAUSE now starts to feel a little better.
Hi @darlia,
Welcome to Connect. I moved your message to this discussion thread in the newly formed Neuropathy group so that you can meet other members who are living with and talking about various types of neuropathy. Thank you also for posting a separate discussion about FGFR3 antibody causing peripheral neuropathy. For those interested, please see Darlia's post here:
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Wow, Your post is the first one I have seen that mirrors some of my symptoms. It's difficult to explain these problems to anyone who has no clue what we're talking about. I have to sleep under bedding that is not tucked in so I can stick my feet out. I have less pain when I am wearing socks. I need to wear slippers or shoes at all times for comfort or to prevent injuries (I stubbed and broke my little toe a few months ago). But I don't like wearing shoes because after a while they make my feet burn and tingle with electricity. Learning which shoes to wear and when is always a concern. Your recliner statement was the kicker - I can't have my feet hang off a chair; they must be in contact with something when I'm sitting. Otherwise the stinging and electricity set in.
When I am in the passenger seat in a car, I can't keep my feet flat on the floor (too much pressure?); they have to stretch out in front of me and connect with the incline up front, and I have to move them around a lot. Thanks for confirming that perhaps my symptoms are real. What to do about them? That's another story.
As a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which is the CAUSE of my peripheral neuropathy now I am told.
Also have Gastroparesis because of this ANTIBODY. Neurotically my stomach nerves don't work properly and it takes my stomach 5-6 x longer to digest
I posted a post titled FGFR3 ANTIBODY, for those interested, please go there and leave me your comments.
Just knowing the CAUSE now starts to feel a little better.
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
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Why are your arms in braces? Carpal Tunnel Syndrome is just in your wrist.
These braces are like fingerless gloves that loop over the thumb, cover the palm of the hand, wrist, and about half way to the elbow. Hard base to keep the wrists straight combined with three adjustable velcro straps to keep the brace in place. Like trying to do anything with boxing gloves on. My caregiver massages in the kush creme on hands, knuckles, and wrists each day and then straps these things on me. The ointment kills the pain. I take the braces off for a few minutes at a time to be able to use my PC, but then back on again. The doctor insists I wear them 24 hours a day! She sent me to a specialist to have them fitted. Imagine trying to sleep with those things on - it's not easy. Also not easy to control my wheelchair with only the thumb and forefinger to use on the controls.The pain (without the creme) runs from the palms of my hands up past my elbows. I apologize the the long whine. It's just that this is the first time I have found a message board where I can meet others who have this disease. I went to the Amyloidosis Organization conference last weekend and discovered that most of the others there had not yet reached the point in the progression to have carpal tunnel syndrome and most were still ambulatory enough not to be in a wheelchair yet,
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2 ReactionsMedical marijuana has given me an almost pain free life after years of doctors putting me on opioids. I get the CBD oil capsules which is NOT hallucinogenic at all. I take one each morning with breakfast. And I got a jar of the ointment to massage any 'hot spots' that occur. When I get that sharp pain in my leg or shoulder, I rub it in and the pain is gone in 10 minutes.
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4 ReactionsI am dealing with neuropathy in my feet and finger tips. I take lyrica daily. Have a problem wearing shoes. My neuropathy came from chemo treatment. Would like to know if anyone can recommend help.
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1 ReactionHello @user_ch1df4426, when you have peripheral neuropathy it's really important to take care of your feet because you can't feel them. You probably already know this but just in case there is more information on the following Mayo Clinic page:
http://www.mayoclinic.org/diseases-conditions/diabetes/expert-blog/peripheral-neuropathy/bgp-20056528
I wear socks during the day and at night which helps if I step on something that injures the foot...then I can tell it by the socks. Also, I try to wear shoes that have plenty of toe room which seems to help. Hoping others can jump in if they have some stories to share.
While I don't have chemo induced neuropathy and I do have small fiber peripheral neuropathy with no pain, only the numbness. I take some over the counter natural supplements and vitamins that have helped me. I found it in a neuropathy support group on Facebook. Others in the group that also had chemo induced neuropathy have shared that it has enabled them to get off pain medication once they had been on the supplements for a few months. When trying alternative treatments you should always have a discussion with your doctor first. You can read my story from an earlier post here:
https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=13af2ed380
John
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2 Reactions@johnbishop
I have been wearing socks day and night because my feet hurt if they have contact with shoes or bedding, and I never walk without slippers or shoes, and I'm learning which of my shoes I can walk around stores in, and which ones I can't. I'm really thankful for my handicap placard, as it saves me a lot of steps.
When I sit in the recliner, I have to use a footstool so my feet don't just hang off - I'm tall - because that makes them hurt.
Jim
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4 ReactionsAs a matter of fact I have recently been diagnosed with the FGFR3 ANTIBODY (rare) which is the CAUSE of my peripheral neuropathy now I am told.
Also have Gastroparesis because of this ANTIBODY. Neurotically my stomach nerves don't work properly and it takes my stomach 5-6 x longer to digest
I posted a post titled FGFR3 ANTIBODY, for those interested, please go there and leave me your comments.
Just knowing the CAUSE now starts to feel a little better.
-
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Helpful -
Hug
2 ReactionsHi @darlia,
Welcome to Connect. I moved your message to this discussion thread in the newly formed Neuropathy group so that you can meet other members who are living with and talking about various types of neuropathy. Thank you also for posting a separate discussion about FGFR3 antibody causing peripheral neuropathy. For those interested, please see Darlia's post here:
- FGFR3 ANTIBODY https://connect.mayoclinic.org/discussion/fgfr3-antibody/
-
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Helpful -
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2 ReactionsWow, Your post is the first one I have seen that mirrors some of my symptoms. It's difficult to explain these problems to anyone who has no clue what we're talking about. I have to sleep under bedding that is not tucked in so I can stick my feet out. I have less pain when I am wearing socks. I need to wear slippers or shoes at all times for comfort or to prevent injuries (I stubbed and broke my little toe a few months ago). But I don't like wearing shoes because after a while they make my feet burn and tingle with electricity. Learning which shoes to wear and when is always a concern. Your recliner statement was the kicker - I can't have my feet hang off a chair; they must be in contact with something when I'm sitting. Otherwise the stinging and electricity set in.
When I am in the passenger seat in a car, I can't keep my feet flat on the floor (too much pressure?); they have to stretch out in front of me and connect with the incline up front, and I have to move them around a lot. Thanks for confirming that perhaps my symptoms are real. What to do about them? That's another story.
Thanks, Jim
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1 ReactionThank 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
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