Does this sound like Neuropathy? Sudden burning sensations in upper legs following improved glucose control.

[Prancy]

Sorry to see you had a flare. Was it just like what you had before?

I’m glad to report that my symptoms have improved quite a bit. The random burning sensation has been gone for months. The intermittent quarter size burning spot on my foot hasn’t appeared in weeks. The paraesthesia in my feet has decreased dramatically and is only barely noticeable.

I’ve never had any pain, but what I don’t get several times a week is awakening to one hand feeling asleep. It’s very upsetting. i wish this would resolve.

My BG is quite good. Pump estimates my a1c around 6.7. Will get B12 checked soon. Still taking treatment dose.

 

[Caprock94]

Sorry to see you had a flare. Was it just like what you had before?

I’m glad to report that my symptoms have improved quite a bit. The random burning sensation has been gone for months. The intermittent quarter size burning spot on my foot hasn’t appeared in weeks. The paraesthesia in my feet has decreased dramatically and is only barly noticeable.

I’ve never had any pain, but what I donget several times a week is awakening to one hand feeling asleep. It’s very upsetting. i wish this would resolve.

My BG is quite good. Pump estimates my a1c around 6.7. Will get B12 checked soon. Still taking treatment dose.

This is great to hear! Glad you are doing well. The flare is very similar to before, yes. Hoping for a similar result in that it calms down. Slightly better today, but still not great.

I wouldn't worry about your hands falling asleep. That's pretty common for anyone. Has happened to me off and on for years.

 

[Prancy]

This is great to hear! Glad you are doing well. The flare is very similar to before, yes. Hoping for a similar result in that it calms down. Slightly better today, but still not great.

I wouldn't worry about your hands falling asleep. That's pretty common for anyone. Has happened to me off and on for years.

Really? That’s interesting about your hands going to sleep. It actually wakes me up it’s so uncomfortable. It also starts to happen if I’m reading in bed in certain positions. That’s why I wonder if it’s spine related. Idk. I’ll revisit it again with my neurologist.

 

[Caprock94]

Have you seen a neurologist? Changed eating? Maybe A1c a little on the rise? The Neurologist saved my life. I had no idea what was happening and she said TIND is common, even though not reported a lot, and may take a long time to clear. It’s been an interesting battle. I can go 3-4 days feeling great, then bam, some burning. The freezing pain has stopped.

How are you doing these days Firefly1? Back to 100%?

 

[JJ51]

Hi. I'm new to all this but pretty sure I've got this TIND too. It's great to read you are all doing much better. This started for me 4 months ago with sudden pain aching and numbness in my feet and legs. Not much help from doc or neurologist, can't drive or work as struggling with walking due to these symptoms. Feeling low now, any advice would be much appreciated.

 

[Prancy]

Hi. I'm new tok all this but pretty sure I've got this TIND too. It's great to read you are all doing much better. This started for me 4 months ago with sudden pain aching and numbness in my feet and legs. Not much help from doc or neurologist, can't drive or work as struggling with walking due to these symptoms. Feeling low now, any advice would be much appreciated.

I’d check with your doctor of course, but also check vitamin B12 and B 6 levels. My neurologist diagnosed me with B12 deficiency last year and said it could be the cause of my foot paraesthesia. I’m on daily treatment for that. I am better. He also told me to a avoid taking B6, as too much of that can cause neurological problems. I hope you can get some answers.

 

[Caprock94]

Hi. I'm new to all this but pretty sure I've got this TIND too. It's great to read you are all doing much better. This started for me 4 months ago with sudden pain aching and numbness in my feet and legs. Not much help from doc or neurologist, can't drive or work as struggling with walking due to these symptoms. Feeling low now, any advice would be much appreciated.

Did this happen to you after rapidly lowering blood sugar levels?

 

[JJ51]

Yes. Been diabetic for years and at the beginning of last year my blood sugar was 80 mmol and after 3 month went down to 53mmol since then had nothing but problems. Doc and nurse were pleased with reduction and so was I until I started having these symptoms. Seen neurologist, had loads of tests, including B12, lumbar puncture and mri. No diagnosis as yet, just saying it's due to diabetes!

 

[JJ51]

I’d check with your doctor of course, but also check vitamin B12 and B 6 levels. My neurologist diagnosed me with B12 deficiency last year and said it could be the cause of my foot paraesthesia. I’m on daily treatment for that. I am better. He also told me to a avoid taking B6, as too much of that can cause neurological problems. I hope you can get some answers.

B12 was in range although my doc prescribed supplements, tablet form but low dose. Got doc appt, again next Wednesday and a CT scan Thursday, trying to rule everything else out I think!

 

[stukie]

There is very interesting information about what members have experienced here. The
symptoms can be baffling. I would encourage anyone who comes back here to catch up on this thread to please get your Vitamin B12 level checked, before you take any. Taking it can artificially inflate the numbers. B12 deficiency can cause many symptoms and is often overlooked, especially with people who have diabetes. I’m dealing with it now after finally getting diagnosed last year, but not properly treated. Some people don’t absorb it well, so just taking it orally, doesn’t guarantee absorption. I might have TIND too.

Also look at B6, particularly if on some meds affecting B12 synthesis and recycling . B6 is a key cofactor
Too much B6 can cause neuropathy symptoms .

 

[JJ51]

Thank you for your responses, I will ask the doc next week for blood tests to check for B6 and B12. Any help or advice is very much appreciated.

 

[Prancy]

Also look at B6, particularly if on some meds affecting B12 synthesis and recycling . B6 is a key cofactor
Too much B6 can cause neuropathy symptoms .

Right. My B6 was barely in normal range, but neurologist said to absolutely not take any.

 

[Caprock94]

Yes. Been diabetic for years and at the beginning of last year my blood sugar was 80 mmol and after 3 month went down to 53mmol since then had nothing but problems. Doc and nurse were pleased with reduction and so was I until I started having these symptoms. Seen neurologist, had loads of tests, including B12, lumbar puncture and mri. No diagnosis as yet, just saying it's due to diabetes!

Has it gotten any better since the beginning? I know mine was awful the first couple of months, and then slowly got better over the years. In the middle of a flare up now, and have no idea why.

 

[JJ51]

Hi. No, it's been bad since September and no improvement yet. It's pretty disabling. Started pregabalin but only recently so still on a low dose as yet. Aching legs, numb sensations in legs and feet but pain in feet the worst! Just can't believe you do something good and end up with something so bad!!

 

[JJ51]

Can anyone suggest a cream that can be used on my feet to relieve the pain. As I live in the UK, Capsaicin isn't available right now.

 

[JJ51]

Has it gotten any better since the beginning? I know mine was awful the first couple of months, and then slowly got better over the years. In the middle of a flare up now, and have no idea why.

How are you feeling now? Still having problems with the flare up? Can I ask what your symptoms were when you first got TIND and how long they lasted. Did you take any medications?

 

[Caprock94]

Hi. No, it's been bad since September and no improvement yet. It's pretty disabling. Started pregabalin but only recently so still on a low dose as yet. Aching legs, numb sensations in legs and feet but pain in feet the worst! Just can't believe you do something good and end up with something so bad!!

I understand. Yes, incredibly frustrating.

 

[Caprock94]

How are you feeling now? Still having problems with the flare up? Can I ask what your symptoms were when you first got TIND and how long they lasted. Did you take any medications?

Hi! Sorry I missed this. When I first got it, it came on suddenly. I had zero pain, numbness or tingling in my feet upon diagnosis. Lowered my A1C from 8.3% to 5.2% in like 5 months. Then it came on suddenly. Both feet burning. Hands as well, but to a lesser degree. It was awful the first few weeks. Got better after a couple of months, and then very slowly improved year after year. It's crazy. A month or so ago I would have told you I was about 85% there. Now, I suddenly feel almost like I did in the beginning. Lowered my blood sugar some recently, but not nearly as severe as before - this time from 6.3% to 5.5%. Could that be it? I really don't know.

 

[Prancy]

Hi! Sorry I missed this. When I first got it, it came on suddenly. I had zero pain, numbness or tingling in my feet upon diagnosis. Lowered my A1C from 8.3% to 5.2% in like 5 months. Then it came on suddenly. Both feet burning. Hands as well, but to a lesser degree. It was awful the first few weeks. Got better after a couple of months, and then very slowly improved year after year. It's crazy. A month or so ago I would have told you I was about 85% there. Now, I suddenly feel almost like I did in the beginning. Lowered my blood sugar some recently, but not nearly as severe as before - this time from 6.3% to 5.5%. Could that be it? I really don't know.

Do you suppose it’s coming from something else?

 

[JJ51]

Hi! Sorry I missed this. When I first got it, it came on suddenly. I had zero pain, numbness or tingling in my feet upon diagnosis. Lowered my A1C from 8.3% to 5.2% in like 5 months. Then it came on suddenly. Both feet burning. Hands as well, but to a lesser degree. It was awful the first few weeks. Got better after a couple of months, and then very slowly improved year after year. It's crazy. A month or so ago I would have told you I was about 85% there. Now, I suddenly feel almost like I did in the beginning. Lowered my blood sugar some recently, but not nearly as severe as before - this time from 6.3% to 5.5%. Could that be it? I really don't know.

All sounds very familiar!!

What meds and dosage were you all on?
Relief would be nice, been too long now!