Hey Ruben,
Thanks for the reply and congratulations, man. I’m so happy to hear your symptoms have subsided so much, that’s fantastic. Thanks for all the detailed information you included. So I had an MRI done and definitely issues in my back, I did a lot of running over the years and they’re saying that the spinal stenosis narrowing of the canal as well as a herniated disc is causing the pain due to nerve entrapment. But, like you, I had a neurologist say, “if the majority of your pain is in your feet and legs, then I wouldn’t be able to rule out peripheral neuropathy as the source of your pain”. So as it stands, I have indeed stopped the multi, the doctor is aware of the blood level, and I just did a “skin punch biopsy” last week. Not fun, but not horrible Did it in the office, Lidocaine numbing on a spot top of foot and spot above knee on quad muscle. 2mm round hole is taken out and sent to lab to analyze and confirm/deny if the fibers indeed have “sensory fiber damage”. This is different from “motor nerve damage” as you know I’m sure. The motor nerves would be the sciatic chain going down my legs from back, but this would be the small millions of nerves affected potentially by the B6.
Your diet suggestions are great. Im with you on eating healthy, sleep, hydration, exercise, taking care of yourself as it’s necessary for healing. My challenge is the pain is so brutal that I absolutely cannot run and have quite a bit of weakness where I can lift weights. The back area is struggling when I lift even light weights because as you know, pretty much anything weight bearing needs the help of the back. What I can do is a lot of stretching and isometric holds like forearm planks, crunches, all types of core strengthening.
I had a few more questions if that's okay, Ruben:
- Where was the majority of your pain as it’s worst? Mine tends to be feet, calves, knees.
- Did you ever feet an overall kind of buzzing, sort of pain, that was in your feet lower legs and hands area, oftentimes when you first wake up or during a nap? Some call it the stocking/glove syndrome.
- Did your pain feel worse when you upright and/or walking around, and did it subside when you laid down to rest or sat down?
Thanks for your help, Ruben. This is much appreciated once again. By the way, I didn’t see an AFAIK cream online? Is this an abbreviation of sort or perhaps called something else as well?
Thank you!
Best,
Dino
Hi,
Yes, Lidocaine is what I was starting to use nightly (4%).
My pain was only in my toes, but it started to go to underneath my feet.
Mine was almost always when I laid down (so I thought it was a circulation problem). If I was walking around, I felt it less.
I felt it more with constraining shoes, too.
AFAIK = as far as I know. So the only cream I used (OTC, over the counter) was the
Lidocaine (4%). Seemed to work "well enough", but the buzzing was still there, just not as bad and let me sleep. I never felt any buzzing in anything other than my toes/feet. Burning/buzzing/stinging type ain, almost always when I laid down, and sometimes sitting/standing/walking. Often in the shower (with water contact).
There is some pill (called
Gabapentin) you can take from the doctor that works well for nerve pain, if you're having trouble sleeping because of the pain I highly suggest trying. You've gotta sleep or you'll go crazy thinking about this stuff. I hope things improve for you, but know it can take years.
In regards to the B6 level itself, mine was the highest my doctor ever saw.
Acceptable range:
20.0 - 125.0 nmol/L
Mine was 395 (over 3x accepted level).
In 5 months, the reading lowered to 39.1.
That multivitamin is not helping, you're supposed to see damage after only 1 year. I've been taking it for longer like you, 4-5 years and only recently started to see this problem because B6 is not in the normal blood work. More than this vitamin can cause this stuff, energy drinks too. Anything with 1250% B6 should be pulled off the OTC market.
Did the doctor give you a B6/plasma test? It's a single blood test that tests just that. 65 is within range in my test, I wonder why you think it's 3x - in my range it's 3x the lower reading. You may have multiple things going on (your neuropathy does sound worse, but it's a shame we have to figure this stuff out ourselves. the podiatrist told me I should wear socks when I run, and that's it. she didn't mention B6 or anything, I figured this out alone like you did - the neurologist only confirmed it after I suggested it!).
Step 1 for him was to just see if stopping the multi vitamin was enough, he said if not, we would try other things. We didn't reach that point, I think he was going to say diet change and/or that Gabapentin, not sure.
One thing that reaffirmed in me is to trust your gut, not someone else's - if you feel something is wrong and is not the right advice, or you're not getting better - keep trying/looking. A doctor isn't going to care more about our own health than us.
Also, if you can't run, try the stationary bike. I bought a Peloton type rip off from amazon ($200-300) and it will get the cardio in. Exercise is an anti depressant any way, but being healthier isn't going to hurt. Just start with 15 minutes of biking 5 days a week at
any speed/low resistance until you can handle more. I bike pretty slowly (9-10 mph) but for 30 minutes every other day, while watching Netflix.
https://www.amazon.com/gp/product/B07FF4RBDF/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Reuben