Likelihood that the pain will progress or stop?

Have the same diagnosis. Mine seems to be associated with RA which had been under control for some 3 years. Why it popped up now , again no one seems to have answers. I had one practioner call it a "shoulder shrugger". I wasn't going to buy that.
I too tried accupuncture. He advised me that yes it could help but it would take time. (No definition of how long because of the slow rate of nerve regeneration.) Yes I did seek releif but it was fleeting. I was OK with that as I planned my week for activities following treatmen whenburning.
. I knew I would feel better.
One blood test revealed high levels of B6 Stop taking any supplments with that vitamin in it.
It was recommended I takle ALA, 250 mg, 3 times a day.

Bottom line, I am beginning to feel better. Pain is now tolerable but I find weather changes do intensify . Keep going and try and be patient.

Hi inmagic,
I have presented to my GP with pain and lethargy symptoms for 5 years. So many tests - all "normal". My doctor eventually said, "We have tried everything - it has to be sleep or diet". So I bought a 'wearable' and monitored myself for a year. All "normal". Sadly this Doctor moved.

My symptoms progressed to fluctuations in my eyesight. I mentioned my hot feet to a friend who sent me an article about the escalation in cases of vit B6 toxicity (in Australia). I began reading, researching and comparing data (I am a retired research analyst).

I was surprised that B6 toxicity had been on the TDA (Therapeutic Drugs Administration) radar for some years. The former safe daily dose of vit B6 (in Australia) has been reduced from 100mg a day to 10mg. Yet supermarket and chemists (drugstores) have bottles of supplements containing 100mg on their shelves.

Medical papers are showing concern that many people presenting with peripheral neuropathy are being treated with B6, when that is the cause.

I started taking magnesium (at the recommendation of my doctor) 5 years ago. My supplement contained 25mg of vit B6 - which I took daily. (I weigh about 55-56kg)

I have an annual blood-screen (which I keep and document). Everything 'normal', every year; yet these lethargy and sensitivity issues kept getting worse. So after my friend sent me this article (Dec 2024) I added B6 to my Jan 2025 blood screen.

Everything, as before, boringly normal EXCEPT B6. In our testing the normal range is 35-110 and mine was 1607. The young doctor was very calm about it. "Its reversible. Just stop taking it and you should be fine in about 6 months". After stopping I experienced the most awful mood swings (like I had one nerve left and everyone was getting on it!) and increased ataxia (loss of balance, coordination, dropping things, not hitting the right key on the keyboard!)

As many here know at the start of detox the symptoms get much worse.
I am taking Vit B12 100mcg, Vit D 25mcg, Alpha-lipoic acid 300mg and Acetyl-L-carnitine 500mg. The increase in confusion and short term memory loss is increasing anxiety (that is exhausting). I'm also trying to address the nocturnal leg cramps that started this whole cycle (I am taking 110mg magnesium chelate in the evening as magnesium is circadian). My goal is to do no harm - ie not add to the problem. I've never had an issue with gluten but I've never been friends with dairy. I don't eat much but I consider I eat well (that is very subjective).

I am interested in the role of Vit E and Co-Q10. I have noticed sugar after noon (one of my weaknesses) exacerbates the situation, as does an evening glass of wine (just one!) which I used to find calming. It all seems very joyless right now.

Happy for any advice and happy to share whatever I learn along the way. I often think 'step back' and 'less is more' is good self-advice.

Hi pinoaktree, B6 toxicity is on the rise - well its probably been there a long time but its ability to cause peripheral neuropathy and the number of people inadvertently poisoning themselves with it, is just being uncovered. I've been recommended to take B12 and ALA which I do once a day at minimum levels. I'd rather do slow and steady than add to the problem. I can't believe taking 25mg of B6 a day (admittedly for 5 years) could result in such a high level of toxicity and such discomfort.

Some documented symptoms of Vit B6 toxicity that I suffer from
• Dizziness, balance and/or coordination problems (ataxia - this is a big problem)
• Memory lapses (this seems to be increasing during detox)
• Anxiety (more like despondency, lack of interest and anhedonia)
• Blurry vision (constant changes in ability to focus)
• Fluid buildup in the eyes (eye flooding)
• Numbness or tingling in the hands and feet (and heat in the feet)
• Nausea (mainly loss of appetite and food sensitivities)
• Sensitivity to light (yes)
• Skin rashes (over the years - currently itchy and tingling, not ‘rash’ at the moment)

Your symptoms are a lot like mine. Do you have any pain along with yours? My pain is at a daily 8. Sometimes even a little higher.

Hi heisenberg34
I cannot imagine how devastating it is to live with such daily pain. Is it in your skin, joints, bone or muscle?
I’ve had 50 years of low level pain following a car accident. Joint pain has increased as I’ve aged. I was told to expect and accept arthritis in damaged joints as a part of life. With most of this acceleration happening since I have been taking B6 I am wondering if this will decrease as I detox.
I have back and neck pain, knee and ankle pain - all exacerbated by activity. I have a headache regardless of activity. At night my legs will have a crawling sensation before going rigid - now that pain is like knife and gets me up real quick! Water and magnesium and Voltaren gel are the things I use to stop that. I only use the gel if I haven’t got the other 2 right and need a quick fix. This tells me that there is inflammation involved. After taking such a small dose of vit B6 and getting such high toxicity I am reticent to take anything in large doses. I try to balance every day - I am literally taking every day as a new day, based on what I noticed the day before.

I am working with my general practitioner and having monthly blood tests.
Checking that B6 toxicity is going down and monitoring B12 and D3 as well as inflammation.
I wish I could be more help. Have you tried anti inflammatory medication?
Keep hydrated.
Is it too painful to get massaged?

Curious to know if anyone has seen a doctor found here in this site after plugging in your state. There are a lot in MA but they are all in Boston. Parking and walking could be dicey for me but wondering if any of you see a doctor specializing in neuropathy

My neurologist, who works with many neuropathy patients, tells me that the pain rarely gets above mid point on your thighs, and does not always get that high.

One of my neurologists told me last week that he didn’t think it would go above the knees.

Same doc that told me that he’s never seen anyone with this much pain, and most of his patients aren’t disabled at all.

Meanwhile, I just bought a wheelchair and the pain drives me beyond crazy.

Are you on Tramadol? It has been the only thing that works for me, as I'm unable to tolerate other options.

Try Tramadol.