topic Re: This Darn Foot Neuropathy in Wellness

This Darn Foot Neuropathy

Goodie2shoes — Wed, 03 Jul 2024 22:07:09 GMT

I know this is a side effect of Diabetes and although I have made changes in my diet due to other issues, lost weight and no longer taking meds, my feet are constantly feeling numb and it's so aggravating. I've been on gabapentin for several years with no change and the last time I ordered a refill my doctor took me off the medication so I'm not taking anything for the symptoms now.

I have an upcoming appt with him on 7/8 so I will address this ongoing problem because I was not notified why the script refill was denied although I anticipate because of the duration I was on the meds. So my question for anyone who has diabetic neuropathy what meds if any are you taking that has reduced or eliminated the discomfort or what has helped including foot exercise etc? Thanks !

Re: This Darn Foot Neuropathy

spumoni99 — Wed, 03 Jul 2024 22:26:50 GMT

My husband has had severe neuropathy for years, he is not diabetic and is not overweight. He is pre-diabetic. He has even stepped on glass walking through the house bleeding and didn't know.

He goes in every 3 weeks to get his feet trimmed, he has a problem toe, the doctor wants to amputate half of it because if curls and rubs against his shoe. He is hesitant to do this. He is prescribed special shoes but really nothing helps.

He was prescribed gabapentin but it didn't really help. My advice is just be careful and check your feet daily because you don't feel any damage.

Re: This Darn Foot Neuropathy

Goodie2shoes — Wed, 03 Jul 2024 22:41:02 GMT

@ spumoni99 wrote:

He was prescribed gabapentin but it didn't really help. My advice is just be careful and check your feet daily because you don't feel any damage.

So sorry your husband is dealing with this as well and the thought of amputation of half of his toe is awful ! The Gabapentin did'nt really help me either. Thanks for the advice, I'm very careful, I don't even walk around my apartment bare footed.

Re: This Darn Foot Neuropathy

spumoni99 — Wed, 03 Jul 2024 22:47:20 GMT

@Goodie2shoes wrote:
@ spumoni99 wrote:
He was prescribed gabapentin but it didn't really help. My advice is just be careful and check your feet daily because you don't feel any damage.

So sorry your husband is dealing with this as well and the thought of amputation of half of his toe is awful ! The Gabapentin did'nt really help me either. Thanks for the advice, I'm very careful, I don't even walk around my apartment bare footed.

Thats good, my husbands doctor also told him to never go barefoot. Also make sure none of your shoes rub against your foot.

Re: This Darn Foot Neuropathy

JeanLouiseFinch — Wed, 03 Jul 2024 23:06:51 GMT

I've had peripheral neuropathy for many years. I used to be pre diabetic before I changed my way of eating. Now my A1C is normal but the damage is done. I've tried supplements and they did nothing. I tried Red Light Therapy slippers but only felt temporary soothing and warmth while wearing them. Dead nerves don't regenerate. Walking everyday can help with blood flow.

Re: This Darn Foot Neuropathy

RedTop — Wed, 03 Jul 2024 23:07:17 GMT

@Goodie2shoes

Neuropathy discomfort does not go away; it is a circulation issue you will deal with for the rest of your life regardless of diabetes status. My husband has been on Gabapentin for 20 years; he is on the maximum dose now and has very little feeling in his feet. He scuffs when he walks, but thinks he's picking up his feet up and setting them down normally.

@spumoni99

Even with custom made shoes, my husband has 2 toes that crush each other and create a friction rub that easily turns into an open pressure sore. After dealing with about 4 sores that take nearly 3 months to close, the VA podiatrist tried to convince my husband to agree to amputate that #2 toe. My exact response to her was "OH HELL NO! And that was the end of that! My husband had an amputation procedure on his foot 5 years ago thru the VA that took 364 days to completely heal. It was a nightmare I assure you, and one I will avoid again at all cost. For the last year, I wrap that #2 toe with a gauze pad, opened, folded and cut in half length, secured by cloth tape. The gauze protects that toe, keeps the big toe straight as well, and knock on wood, so far so good with no sore. I told the VA podiatrist I will pad my husbands toe every single day for the rest of his life before I will see him cope with another amputation, so she keeps me supplied with gauze pads and cloth tape to do things my way. I also file his toenails between nail cutting appts in order to prevent issues.

Re: This Darn Foot Neuropathy

Nonametoday — Wed, 03 Jul 2024 23:12:53 GMT

@Goodie2shoes wrote:
I know this is a side effect of Diabetes and although I have made changes in my diet due to other issues, lost weight and no longer taking meds, my feet are constantly feeling numb and it's so aggravating. I've been on gabapentin for several years with no change and the last time I ordered a refill my doctor took me off the medication so I'm not taking anything for the symptoms now.
I have an upcoming appt with him on 7/8 so I will address this ongoing problem because I was not notified why the script refill was denied although I anticipate because of the duration I was on the meds. So my question for anyone who has diabetic neuropathy what meds if any are you taking that has reduced or eliminated the discomfort or what has helped including foot exercise etc? Thanks !

@Goodie2shoes

My son was on gabapentin for years to no avail. I asked him to ask his doctor for Trileptal, which is what I take, and he did. It did not completely make it go away but many times, he said, he never had it and had "feeling" back in his foot. He said it took about 3 weeks of being compliant in taking it before he could tell a difference but certainly could tell a difference from the gaba.

Re: This Darn Foot Neuropathy

cindyNC — Thu, 04 Jul 2024 00:32:26 GMT

My BF's doctor decided to prescribe Alpha-Lipoic acid

From Google search. Alpha-lipoic acid — Alpha-lipoic acid (ALA) is an antioxidant medication. Several short-term trials showed that it was helpful in relieving pain caused by diabetic neuropathy. Thus, ALA may be recommended to people with diabetic neuropathy who do not improve with or who cannot tolerate other treatments. However, longer-term studies are still needed to confirm its safety and effectiveness. In the United States, ALA is available without a prescription as a dietary supplement. It is usually taken by mouth once per day.

His foot problems may not be related to his diabetes, but he is refusing to see a podiatrist or ortho.

Other options from Google search

Several B vitamins may help with neuropathy, including:

Vitamin B12
Helps maintain the myelin sheath that covers nerve fibers. A deficiency in B12 can cause peripheral neuropathy, which can lead to permanent nerve damage if left untreated.
Vitamin B6
Helps maintain the covering on nerve endings. However, taking more than 200 milligrams (mg) of B6 per day can lead to nerve damage and neuropathy symptoms.
Thiamine
Also known as vitamin B1, thiamine has been used in neurology cases such as neuropathy and alcohol-induced encephalopathy. Benfotiamine, a synthetic form of thiamine, can help deliver nutrients to nerves and improve pain caused by diabetic neuropathy.

Re: This Darn Foot Neuropathy

We rescue cats — Thu, 04 Jul 2024 00:35:00 GMT

I have mild neuropathy and take Alpha Lipoic Acid, it helps. I take Jarrow brand "Alpja Lipoic Sustain" and I get it at Amazon.

Re: This Darn Foot Neuropathy

Goodie2shoes — Thu, 04 Jul 2024 01:30:22 GMT

@ We rescue cats wrote: I have mild neuropathy and take Alpha Lipoic Acid, it helps. I take Jarrow brand "Alpja Lipoic Sustain" and I get it at Amazon.

Thanks, I will review the information on it.

Re: This Darn Foot Neuropathy

Goodie2shoes — Thu, 04 Jul 2024 01:41:20 GMT

@ cindyNC Thanks for the information, I do take a daily multivitamin "One a Day Women's" which includes Thiamin, B12 and B6. I'm not familiar with ALA so I will look into it and I will be discussing it with my MD on 7/8.

Re: This Darn Foot Neuropathy

Toppers3 — Thu, 04 Jul 2024 02:59:58 GMT

Hi @Goodie2shoes ,

I found out that this needs to be addressed by multiple approaches in my opinion, abnd it took me along time to sort all of it out.

What really finally helped me was having one doctor coordinating my care, but also me keeping all of my doctors informed about what was happening with my Diabetic care.

My Podiatrist/Foot Surgeon was most helpful to me.

I also take Alpha-Lipoic Acid and Magnesium Malate and a Super B Complex to help calm nerve activity. These are all over-the-counter supplemements.

For inflammation I take Tart Cherry and a Ginger supplement--two more over-the-counter separate supplements.

I also take prescription meds. as well but I'm mentioning supplements that I also feel are helpful.

My primary care doctor knew what I was trying/taking and the reason why regarding the supplements.

I think that I shared here that I also have Diabetic Peripheral Neuropathy not only in both feet and legs, but also in both hands, fingers, and arms.

I requested Physical Therapy from my Podiatrist, as I was having too much trouble with my balance when trying to walk. I would lean or tilt/fall over sideways when walking.

The therapy definitely helped with balancing skills so that I could catch myself before starting to fall.

I also have custom shoes and custom inserts now that are padded (custom orthotics) to help keep my feet safe, and a custom brace for my right leg, too.

Re: This Darn Foot Neuropathy

HerRoyaLioness — Thu, 04 Jul 2024 03:56:09 GMT

I'm type 2 diabetic and I take Alpha-Lipoic Acid (now brand from Amazon, 600 mg) and a good vit B complex from Andrew Lessman, with my doctor's approval.

Re: This Darn Foot Neuropathy

walkingal — Thu, 04 Jul 2024 15:44:14 GMT

@Goodie2shoes I'm sorry to hear of your discomfort. I have peripheral neuropathy in my feet, but it is a side effect from chemo. Chemo was over the latter part of 2022. My medical oncologist offered the meds some of you mentioned, but she didn't push it. Told me to think about it. She also has told me the PN may or may not ever go away.

Some people swear by acupuncture. I know of someone who has PN in her elbows, legs, and back due to heredity. She goes for acupuncture on a regular basis.

My PN is not getting any better. I saw a new GYN oncologist who was filling in for my regular GYN Onc, and I mentioned my PN to him. He said it will never go away unless I start exercising. He asked me if I would consider physical therapy, I said yes. He wrote me a script for it. I'll let you know how it goes, haven't started it yet.

Take care.

Re: This Darn Foot Neuropathy

Teddie — Thu, 04 Jul 2024 22:54:13 GMT

When I learned I had diabetes I asked God to show me what I should be doing. I'm diligent about taking specific supplements but the one I won't be without is the Alpha Lipoic Acid. When I learned about that I knew I needed to be on it regularly. I have no leg or feet issues, thankfully.

Re: This Darn Foot Neuropathy

Daisy Sunflower — Fri, 05 Jul 2024 18:29:58 GMT

@Teddie

So sorry about your husband. Sounds like he went through a lot.

Re: This Darn Foot Neuropathy

Teddie — Fri, 05 Jul 2024 18:35:09 GMT

Thank you, @Daisy Sunflower . He really did. It's awful

Re: This Darn Foot Neuropathy

just bee — Mon, 08 Jul 2024 14:36:45 GMT

Diabetes runs in my mother's family, so I've done everything possible to avoid it mainly to avoid issues with neuropathy.

I am not diabetic but I went through chemotherapy and chemoradiation last year. My doctors have told me that the neuropathy is permanent but will improve slightly.

As far as I can tell, it's only getting worse.

Gabapentin didn't help. A coworker (also a nurse) suggested Lyrica. I prefer not to use prescription medications so I haven't tried it. You might want to run this past your doctor for his/her opinion.

Re: This Darn Foot Neuropathy

Teddie — Fri, 12 Jul 2024 20:28:42 GMT

@Daisy Sunflower wrote:

@Teddie

So sorry about your husband. Sounds like he went through a lot.

@Daisy Sunflower

As you can see your question to me and my reply have been chopped up and deleted. This is why people are not wanting to participate on these boards anymore. It took a lot for me to share all that. I'm extremely disappointed.

Re: This Darn Foot Neuropathy

Imadickens — Thu, 18 Jul 2024 06:31:28 GMT

I suffered with PN for twenty years. I mean SUFFERED! I saw two top specialists, one told me I was diabetic (I was not) without even looking at me! The other was useless. I gave it one more try at NYPresbyterian with a neurologist there. 8 years ago he told me I may never find the cause and I should only treat the symptoms. I returned 4 years ago, afraid I had a brain tumor. That time he was able to order genetic testing as the $25,000 test was now covered by my insurance. He thought what I had was genetic and terminal. He was right about it being genetic, but thank God, not terminal. Test showed I have a mutation of my SPTLC1 gene causing an extremely rare (only two other families on earth share my mutation ( my genetic readout states that though there may be others who have not yet been tested) disease called HSAN1A. It keeps my body from handling deoxysphingaloids correctly. It's a late onset disease (usually 60's) but can have symptoms much earlier or even present fully at any age.

It attacked my peripheral nerves first and is now attacking my muscles. There is no real treatment or cure and runs in families, requiring only one parent to pass it on. My daughter did not get it but my son did and they were expecting a baby when we found out. A trial showed extremely large doses of L Serine can offset the acid build up. Body builders take 2 pills daily, I should take 54! It comes in powder form that can be mixed with a liquid but it gags me (tastes like mud) so I take it in pill form. I can't take that many so I take between 20 and 30 daily. My doctor said the dose was an estimate so any I take is helpful.

I walk best barefooted (how I got osteomyelitis ) as I have very little feeling in my feet now and have very poor balance. It moved to my hands about 2 years ago and I have difficulty using them. It also affects hearing so I now use aids. It's a very interesting mutation that is not widely known by doctors. My doctor asked me to make a presentation to other doctors at NY Pres who were interested. The Deter Family has been a driving force in research through Boston Med and I think there is a big push for research in Australia. Anyone with PN should be genetically tested, even if they have Diabetes type 2. I have developed it in past 3 years as well. Note,

there are other versions of HSAN that cause different symptoms. Anyone with any unexplained neurological symptoms should at least research HSAN, hereditary sensoral autosomal neuropathy. I believe they all involve the SPTLC gene but at different places.