1. < Neuropathy

Desperate: Is there any hope for neuropathy?

Posted by cecelia19 @cecelia19, Aug 19 10:48pm

Hi everyone,

In 2019 I developed neuropathy in some toes in my right foot. Stabbing, sharp, creepy crawling sensations. My podiatrist prescribed a compounded topical and it worked. Last year my left foot went partially numb with shock like pain which was subdued by alpha lipoic acid, B complex, folate (I have a MTHFR mutation), turmeric and magnesium. In July I experienced partial numbness in my right foot after trenching out a landscape bed.

History: I am a 67 y/o female. I have Raynaud’s which mostly affects my fingers. I developed trigeminal neuralgia at age 30 after a dental procedure (I have been on Elavil 50mg since which has diminished this pain) and had neuropathic pain in an incision after ankle tendon surgery which resolved with physical therapy.

I have no motor dysfunction.

I read journal articles which are showing that acetyl-N-Carnitine is beneficial in helping to heal nerve tissue. I thought I would try this as the ALA worked so well and in addition to the numbness there was some breakthrough sharp pain. On the third day an hour after taking it, my ankles felt like they were on fire. It spread to my feet and legs from the knee down. Burning, pins and needle like pain. I’ve been popping Tylenol and Ibuprofen like crazy. Today I saw my PCP and she prescribed a Medrol dose pack (prednisone) which I’ll begin in the morning. She also prescribed Gabapentin (I took that short term before for the TGN), 300mg bid. A neurologist friend of my husband said that with my propensity towards parasthesias and Raynaud’s, this is likely symmetrical distal parasthesia from the carnitine and should go away within a week. It didn’t.

I am, quite frankly, desperate. I remember how difficult it was to get a handle on the TGN and so far the gaba doesn’t seem to be working. I am putting my hopes on the steroid but right now I feel profoundly depressed and can’t imagine living like this.

Is there someone who can give me a suggestion or words of encouragement because I am losing hope.

Thanks,
Cindy

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

cecelia19 | @cecelia19 | Aug 20 9:52pm
In reply to @dlydailyhope "@iamnana You can check with your doctor, pharmacist and nutritionist about neuropathy supplements and osteoporosis treatments/medications..." + (show)
@dlydailyhope

@iamnana
You can check with your doctor, pharmacist and nutritionist about neuropathy supplements and osteoporosis treatments/medications and supplements. I am not aware of any issues.

Here is a good site that explains benefits of Acetyl l carnitine and even how well it works with alpha Lipoic acid.
https://supplements.selfdecode.com/blog/acetyl-l-carnitine/

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Thank you for this information. I have been taking ALA for a year and it helped so much with my localized neuropathy in the toes. I, too, read that acetyl-l-carnitine was proving extremely successful in trials. However, the third day of taking that supplement is when my neuropathy morphed into burning, pins and needles from my knees down to my feet. It could be a coincidence but the symptoms started one hour after ingesting it the third day. Has anyone heard of having a reaction like this to a carnitine supplement?

REPLY
1 reply
cecelia19 | @cecelia19 | Aug 20 11:53pm
In reply to @pazo "Hello Cindy, my name is Bobby Pazo from Key West, Fl--born and raise here, we're call..." + (show)
@pazo

Hello Cindy, my name is Bobby Pazo from Key West, Fl--born and raise here, we're call KWConchs, any way I read with interest on your post--I'm==83--retired mail man here in Key West but I played {guitar}music part time for over --30---years here in Key West and this week I think my music days are over for sure ,I fell and broke my little pinky finger in my left hand but before that happened, over two months ago, my hands were getting numb and tingling and my wife and I talked it over and I decided to completely retire because of the numbness. Last year I had --4--consecutive
Colon surgeries and the last one I had an infection made it's way to my spine, Fistula. I was in the hospital about two months in Miami--bad at that time- when I came home, that is when I started having numbness in my hands once in a while, but two months ago it became every day. So I thought you would note that some on people- {me} -read your note to the Mayo Clinic. We keep thinking---these are supposed to be the Golden Years???
Take care Mrs Cindy and good luck with your illness, Bobby Pazo

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Dear Bobby, I was so touched to read your letter. You have been through so much, I feel I don’t have a right to complain. And to lose your ability to play guitar. I sure wish I could hear you play. At the age of 57, I decided to take up my dream and take guitar lessons. My husband, 62 at the time, joined me in this endeavor. We took lessons for five years until the pandemic hit when we moved up to Northern Michigan at our cottage. I decided to retire (hubby retired several years prior), and the lessons stopped. I played four instruments at various times in my life, but guitar was the only one that gave me such joy. It was also the most challenging and I admire people like yourself who are accomplished at this most difficult instrument. I can just get lost in it. Practice time never seemed like work, it was more like therapy. Three hours could pass and it seemed like no time at all. Unrelated to guitar but since this PN started, my finger tips are starting to feel not numb but tingly and I’m wondering what I should do before this gets any worse. Have your doctors given you any treatment suggestions? Thanks again for this letter - the kindness of people like you, especially during times like this, lifts my spirits more than you can know.

REPLY
1 reply
bettyg81pain | @bettyg81pain | Aug 21 7:16am
In reply to @dlydailyhope "@cecelia19 I am a 55 year old female with idiopathic small fiber neuropathy/peripheral neuropathy, congenital spinal..." + (show)
@dlydailyhope

@cecelia19
I am a 55 year old female with idiopathic small fiber neuropathy/peripheral neuropathy, congenital spinal stenosis, degenerative disc disease and osteoarthritis. This all was diagnosed when I was 42 and 47.

My neuropathy started in my feet with burning/pins and needles and especially worse in warmer months. I started taking alpha Lipoic acid, acetyl l carnitine and other nerve health supplements and it helped reduce the symptoms. I used capsaicin creams on my feet, too. I never had a bad reaction to the supplements or creams.

Have you been diagnosed with small fiber neuropathy by a neurologist via a skin punch biopsy? Have you had full bloodwork panels done for neuropathy? My rheumatologist and neurologist did very extensive bloodwork to try to get to the cause of my symptoms. Are you deficient in B12 or at toxic B6 levels? Have you ever been exposed to toxins throughout your life?

Have you ever had EMGs/nerve conduction studies or MRIs done by a neurologist to check for spinal cord or nerve root/nerve compression/radiculopathy? My spinal stenosis and DDD has caused cervical/lumbar radiculopathy to arms/hands and legs/feet plus neurogenic claudication causing pain/weakness/numbness in back/hips/buttocks/legs/feet.

Don’t give up hope and keep asking questions and reviewing your list of symptoms with doctors to get to root cause.

Btw…I also have autoimmune Hashimoto’s thyroiditis and alopecia areata. I have read that small fiber neuropathy could be caused by an autoimmune attack in your nerve cells.

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I am going through all of the tests right now. What kind of reaction did you have to the acetyl carnitine have you had and what other nerve supplements other than alpha Lipoic acid have helped you. What were the results from the rheumatologist and where are you now with what your doctors suggest?

REPLY
1 reply
bettyg81pain | @bettyg81pain | Aug 21 7:17am
In reply to @cecelia19 "Thank you for this information. I have been taking ALA for a year and it helped..." + (show)
@cecelia19

Thank you for this information. I have been taking ALA for a year and it helped so much with my localized neuropathy in the toes. I, too, read that acetyl-l-carnitine was proving extremely successful in trials. However, the third day of taking that supplement is when my neuropathy morphed into burning, pins and needles from my knees down to my feet. It could be a coincidence but the symptoms started one hour after ingesting it the third day. Has anyone heard of having a reaction like this to a carnitine supplement?

Jump to this post

Hope everyone responds before I start taking it!!

REPLY
dlydailyhope | @dlydailyhope | Aug 21 8:45am
In reply to @bettyg81pain "I am going through all of the tests right now. What kind of reaction did you..." + (show)
@bettyg81pain

I am going through all of the tests right now. What kind of reaction did you have to the acetyl carnitine have you had and what other nerve supplements other than alpha Lipoic acid have helped you. What were the results from the rheumatologist and where are you now with what your doctors suggest?

Jump to this post

@bettyg81pain

Here is a link with some of the supplements that have helped me and my small fiber neuropathy/peripheral neuropathy.
1.
https://healthyfocus.org/10-proven-vitamins-and-supplements-for-neuropathy/
2.
https://modernneuropathy.com/8-best-supplements-for-neuropathy/
3.
https://www.healthline.com/health/peripheral-neuropathy-natural-treatments
I personally never had any bad reactions to the neuropathy supplements, capsaicin creams or lidocaine pain patches. I had spinal injections that helped with spinal stenosis/nerve compression and radiculopathy. You want to make sure to not take too much to become toxic. Improving diet and adding some of the supplements have helped me.

I was also iron deficient (oxygen levels lower) and addressing that, spine health issues, thyroid Hashimoto’s/hypothyroidism, sleep apnea (oxygen levels lower) and getting breast implants removed (breast implant illness detoxification of silicone liners) has helped me feel better. My autoimmune flares are down, my neuropathy in my feet/calves, restless leg syndrome, muscle spasms, etc. has improved. It has taken about 8 years to address many of the symptoms and depression due to chronic pain/health issues so don’t give up advocating for yourself, researching your symptoms and diagnoses/treatment options, getting doctors that listen and respect you and they show they want to help improve your quality of life. Make sure to prioritize self care because if you don’t put your oxygen mask on first, you can’t really help others or be at your best.

May God bless you and be with you on your health care journey.

REPLY
1 reply
dlydailyhope | @dlydailyhope | Aug 21 8:56am
In reply to @dlydailyhope "@bettyg81pain Here is a link with some of the supplements that have helped me and my..." + (show)
@dlydailyhope

@bettyg81pain

Here is a link with some of the supplements that have helped me and my small fiber neuropathy/peripheral neuropathy.
1.
https://healthyfocus.org/10-proven-vitamins-and-supplements-for-neuropathy/
2.
https://modernneuropathy.com/8-best-supplements-for-neuropathy/
3.
https://www.healthline.com/health/peripheral-neuropathy-natural-treatments
I personally never had any bad reactions to the neuropathy supplements, capsaicin creams or lidocaine pain patches. I had spinal injections that helped with spinal stenosis/nerve compression and radiculopathy. You want to make sure to not take too much to become toxic. Improving diet and adding some of the supplements have helped me.

I was also iron deficient (oxygen levels lower) and addressing that, spine health issues, thyroid Hashimoto’s/hypothyroidism, sleep apnea (oxygen levels lower) and getting breast implants removed (breast implant illness detoxification of silicone liners) has helped me feel better. My autoimmune flares are down, my neuropathy in my feet/calves, restless leg syndrome, muscle spasms, etc. has improved. It has taken about 8 years to address many of the symptoms and depression due to chronic pain/health issues so don’t give up advocating for yourself, researching your symptoms and diagnoses/treatment options, getting doctors that listen and respect you and they show they want to help improve your quality of life. Make sure to prioritize self care because if you don’t put your oxygen mask on first, you can’t really help others or be at your best.

May God bless you and be with you on your health care journey.

Jump to this post

@bettyg81pain
I meant to mention that my bloodwork mainly showed iron deficiency, thyroid autoantibodies (Hashimoto’s thyroiditis which showed my body was attacking my thyroid cells causing a large nodule to form which I had removed due to swallowing/speaking issues and it was suspicious that concerned me due to family history of thyroid cancer), antiphospholipid autoantibodies (higher risk for clotting), lupus ANA/autoantibodies, and some inflammation/dehydration markers/results.

REPLY
pazo | @pazo | Aug 21 11:33am
In reply to @cecelia19 "Dear Bobby, I was so touched to read your letter. You have been through so much,..." + (show)
@cecelia19

Dear Bobby, I was so touched to read your letter. You have been through so much, I feel I don’t have a right to complain. And to lose your ability to play guitar. I sure wish I could hear you play. At the age of 57, I decided to take up my dream and take guitar lessons. My husband, 62 at the time, joined me in this endeavor. We took lessons for five years until the pandemic hit when we moved up to Northern Michigan at our cottage. I decided to retire (hubby retired several years prior), and the lessons stopped. I played four instruments at various times in my life, but guitar was the only one that gave me such joy. It was also the most challenging and I admire people like yourself who are accomplished at this most difficult instrument. I can just get lost in it. Practice time never seemed like work, it was more like therapy. Three hours could pass and it seemed like no time at all. Unrelated to guitar but since this PN started, my finger tips are starting to feel not numb but tingly and I’m wondering what I should do before this gets any worse. Have your doctors given you any treatment suggestions? Thanks again for this letter - the kindness of people like you, especially during times like this, lifts my spirits more than you can know.

Jump to this post

Hi Cecelia, yes I did have my doctor here in Key West, Dr. Jennifer Charity sent me to a specialist but nothing came of it. I had to give up so many--GIGS--and being a local person from here, a lot of people know me, I was so sorry for all the people that used to follow me to all the places I played. At my age--83--I play "OLDIES" but I have been playing along time and it became my second job. i also play Piano, I took two years of piano lessons when I was about--40--I kind of was interested in it. I never did a job using just the piano, but I did include it in some of my jobs, I used a computer soft ware {Lap Top} called--Cakewalk 9.0 so if any one out there wants to follow up doing a complete entertainment by your selves this is the gear you need. There is also another soft ware called---Band In A Box--which is good--but not as good as Cakewalk. I know I'm going to miss playing music but I can still play piano at home, as you said it is not only fun but it's like having therapy--you know. We have four girls--one son, 8 grand children--only two girls live here in Key West which is a beautiful place to live and--grow up in--BUT-- it's become very expensive to live here and -for sure, we worry about hurricanes. Thank you all for contacting me and I hope--EVERY ONE OUT there with health problems ,good luck and to heal soon. If any one wants more information on the music etc--just email me, it's ok I don't mind. It's really sad in a way as I mentioned before, we all should be enjoying our selves at these age's you know but it's what--GOD--has in all our lives. We don't travel any more which my wife really misses, all our children mostly moved to Orlando, Fl. it's too big for us though. She is from Newark, De--we met in 1974--she was in the US Navy here. OK--I have made this too long--an old habit I formed being a mail man. God bless you all--I knew there were good people out there, Bobby Pazo

REPLY
cecelia19 | @cecelia19 | Sep 16 10:13pm

I’m trying to get into a major medical center for help for my PN, hoping that there is something I can try besides amitriptyline and Gabapentin. I can’t live this way. I would love to go to Mayo - I’ve been there ten times for different family members but don’t know if they can offer anything else. Right now everything seems so hopeless. Has anyone else ever felt like this? Am I just setting myself up for disappointment thinking that I can get my life back? Getting through each day is like climbing a mountain. Are there any success stories? Something to give me hope? Please help me.

REPLY
5 replies
SusanEllen66 | @SusanEllen66 | Sep 16 11:23pm
In reply to @cecelia19 "I’m trying to get into a major medical center for help for my PN, hoping that..." + (show)
@cecelia19

I’m trying to get into a major medical center for help for my PN, hoping that there is something I can try besides amitriptyline and Gabapentin. I can’t live this way. I would love to go to Mayo - I’ve been there ten times for different family members but don’t know if they can offer anything else. Right now everything seems so hopeless. Has anyone else ever felt like this? Am I just setting myself up for disappointment thinking that I can get my life back? Getting through each day is like climbing a mountain. Are there any success stories? Something to give me hope? Please help me.

Jump to this post

@cecelia19 I am so sorry you are having such a hard time.
I think most of us who have PN have or are feeling like you do. It’s a tough situation for all of us. It seems there are so many causes, and no answers for any of them.

I have polyneuropathy caused by an autoimmune disease that damaged my arteries which in turn damaged my nerves. That happened 9 years ago. I tried Gabapentin, and Lyrica. They put me to sleep…

Undoubtedly, for me the best thing is ALA, (Alpha Lipoic Acid). It was recommended by my doctor, and if I forget to take it my feet and legs remind me!
It’s an over the counter supplement that you can buy just about anywhere. I get mine on Amazon. The brand I use is “Doctor’s Best”. It’s not cheap, but it works. Two capsules works for me.

You are not alone with your pain and frustration.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 17 7:34am
In reply to @cecelia19 "I’m trying to get into a major medical center for help for my PN, hoping that..." + (show)
@cecelia19

I’m trying to get into a major medical center for help for my PN, hoping that there is something I can try besides amitriptyline and Gabapentin. I can’t live this way. I would love to go to Mayo - I’ve been there ten times for different family members but don’t know if they can offer anything else. Right now everything seems so hopeless. Has anyone else ever felt like this? Am I just setting myself up for disappointment thinking that I can get my life back? Getting through each day is like climbing a mountain. Are there any success stories? Something to give me hope? Please help me.

Jump to this post

@cecelia19, Getting your life back when you have PN can be difficult and I don't think you are alone feeling desperate wanting to get your life back. I'm not sure if you have heard about Mayo Clinic's Pain Rehab Center. You might find it helpful to read through this discussion started by @rwinney on her experience with the Mayo Pain Rehab Program.
-- Mayo Pain Rehab Program: Signing off and my comeback afterwards
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
There is also a newer discussion started by another member that might be helpful.
-- Mayo Clinic Pain Rehab Center (PRC) - What’s Your Experience?
https://connect.mayoclinic.org/discussion/mayo-clinic-prc-whats-your-experience/

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