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

A

acjohnston1992

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Good Afternoon,

I'm a 30 year old Male, diagnosed with type 1 diabetes around 8 years ago and to be completely honest my control has always been poor. My last Ac1 was around 11% and I have been working to bring this down over the past couple of months. I have brought my average meter readings down from 14/15 to 10/11 in the past 3 months or so.

Around 2/3 weeks ago I noticed a very sudden burning sensation in both of my thighs, this has since spread down to my lower legs (but my feet feel fine) and whilst not painful, is very noticeable. It seems to be worse when I am wearing tight trousers, and goes away almost completely when I wear loose fitting shorts. Does this sound like peripheral neuropathy? I assumed P.N began gradually, typically starting in the feet, not the upper legs?

I spoke with my doctor and he suggested it might be 'inflamed nerves' due to the sudden drop in my blood sugars. However, I'm not 100% convinced and wanted to know if anyone had any similar experiences?

Any advice would be much appreciated :)
 
acjohnston1992 said:
Good Afternoon,

I'm a 30 year old Male, diagnosed with type 1 diabetes around 8 years ago and to be completely honest my control has always been poor. My last Ac1 was around 11% and I have been working to bring this down over the past couple of months. I have brought my average meter readings down from 14/15 to 10/11 in the past 3 months or so.

Around 2/3 weeks ago I noticed a very sudden burning sensation in both of my thighs, this has since spread down to my lower legs (but my feet feel fine) and whilst not painful, is very noticeable. It seems to be worse when I am wearing tight trousers, and goes away almost completely when I wear loose fitting shorts. Does this sound like peripheral neuropathy? I assumed P.N began gradually, typically starting in the feet, not the upper legs?

I spoke with my doctor and he suggested it might be 'inflamed nerves' due to the sudden drop in my blood sugars. However, I'm not 100% convinced and wanted to know if anyone had any similar experiences?

Any advice would be much appreciated :)
Click to expand...

Way to go on improving your blood glucose!..But the body doesn't always like it at first, as its used to higher sugar/glucose levels. IMO the big muscles in your legs are complaining they are not getting enough fuel (Glucose), and will play up more if you restrict the blood flow. This should slowly stop as your body gets used to the new improved levels. If you get a chance, try a brisk walk or a short run regime to bed them in.

Peripheral nephropathy usually starts in the feet and fingers, and you will notice this as initially a tingling in your toes with mild discomfort. Unchecked the whole foot will feel like someone has encased it in concrete, as there is an increased numbing sensation. Anyone who is even slightly claustrophobic will really have to get their head around it. Also the ligaments that control your toes will begin to contract due to blood/glucose damage and your toes will begin to curl inwards like a claw. The foot/feet will usually become very red, but not constantly. Of course, bad circulation also caused by diabetes can play apart, but not usually in two legs at the same time. There is usually a delay between one and the other.

Same goes for the fingers, but it is usually the southern bits that go first.

There is a whole lot more stuff to say, but i wont. Either way, keep on trucking with the better control, and you should hopefully not encounter the whole frankly potential horror diabetes can cause.
 
acjohnston1992 said:
Good Afternoon,

I'm a 30 year old Male, diagnosed with type 1 diabetes around 8 years ago and to be completely honest my control has always been poor. My last Ac1 was around 11% and I have been working to bring this down over the past couple of months. I have brought my average meter readings down from 14/15 to 10/11 in the past 3 months or so.

Around 2/3 weeks ago I noticed a very sudden burning sensation in both of my thighs, this has since spread down to my lower legs (but my feet feel fine) and whilst not painful, is very noticeable. It seems to be worse when I am wearing tight trousers, and goes away almost completely when I wear loose fitting shorts. Does this sound like peripheral neuropathy? I assumed P.N began gradually, typically starting in the feet, not the upper legs?

I spoke with my doctor and he suggested it might be 'inflamed nerves' due to the sudden drop in my blood sugars. However, I'm not 100% convinced and wanted to know if anyone had any similar experiences?

Any advice would be much appreciated :)
Click to expand...
I have this. Google Insulin Neuritis and Treatment Induced Neuropathy.
 
Firefly1 said:
I have this. Google Insulin Neuritis and Treatment Induced Neuropathy.
Click to expand...
Yes, I got this too. I dropped my A1C of 8.5 at diagnosis down to 5.2 about four months later. Suddenly, I got a burning feet sensation. Didn't have numbness or tingling or anything noticeable at all prior to lowering my glucose levels so quickly. The first few months were pretty terrible. The good news is gradually it has gotten better. I am 4 years plus in now, and about 3 weeks ago I would have told you I was about 80% back to normal. For some reason, in the last week or two, I'm having more pain again. Can't figure out why as of yet.
 
Caprock94 said:
Yes, I got this too. I dropped my A1C of 8.5 at diagnosis down to 5.2 about four months later. Suddenly, I got a burning feet sensation. Didn't have numbness or tingling or anything noticeable at all prior to lowering my glucose levels so quickly. The first few months were pretty terrible. The good news is gradually it has gotten better. I am 4 years plus in now, and about 3 weeks ago I would have told you I was about 80% back to normal. For some reason, in the last week or two, I'm having more pain again. Can't figure out why as of yet.
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I’m about 7 months in and I believe I had secondary erythromelalgia. The soles of my feet were red, gave off heat to the touch and felt like the were burning and freezing at the same time. This can also be a side effect of PN. It has much improved since onset. The first 1-2 months were terrible. I still get some pains but it’s much less in soles of foot and now at tips of toes (2-3 toes) on echo foot. I’m probably 75%. I was boarder line suicidal until I was diagnosed with TIND by Neurologist. At least I had a reason and timeline when this should turn around. I hope you get to 100% soon.
 
I don't know if I had this but my the pads of my feet used to burn like hell. I put it down to hot weather and wearing flip flops, however I was not diagnosed when this was happening and since I have lost weight and bg more stable its not reoccurred. Many years before when in my early 30s I had what the doctor described as some kind of carpal tunnel in my feet, as I had carpal tunnel in my hands/wrist I took it that he was right in his assumption. I was not tested for diabetes but makes me wonder if I was an underlying diabetic all those years before. I literally could not stand on my feet in the morning they were that bad. I would have to wait until the feeling had worn off about 20 mins later. I will never know. It was like my feet were going through pins and needles really horrible.
 
Firefly1 said:
I’m about 7 months in and I believe I had secondary erythromelalgia. The soles of my feet were red, gave off heat to the touch and felt like the were burning and freezing at the same time. This can also be a side effect of PN. It has much improved since onset. The first 1-2 months were terrible. I still get some pains but it’s much less in soles of foot and now at tips of toes (2-3 toes) on echo foot. I’m probably 75%. I was boarder line suicidal until I was diagnosed with TIND by Neurologist. At least I had a reason and timeline when this should turn around. I hope you get to 100% soon.
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Glad you are doing better! I’m still trying to determine what caused this flare up. A couple of weeks ago I was at a convention in Las Vegas and to walked for miles. I was pleased that I had little to no discomfort. Here I am a couple of weeks later and my feet are burning again. Hoping this passes soon.
 
Caprock94 said:
Glad you are doing better! I’m still trying to determine what caused this flare up. A couple of weeks ago I was at a convention in Las Vegas and to walked for miles. I was pleased that I had little to no discomfort. Here I am a couple of weeks later and my feet are burning again. Hoping this passes soon.
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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.
 
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Firefly1 said:
I’m about 7 months in and I believe I had secondary erythromelalgia. The soles of my feet were red, gave off heat to the touch and felt like the were burning and freezing at the same time. This can also be a side effect of PN. It has much improved since onset. The first 1-2 months were terrible. I still get some pains but it’s much less in soles of foot and now at tips of toes (2-3 toes) on echo foot. I’m probably 75%. I was boarder line suicidal until I was diagnosed with TIND by Neurologist. At least I had a reason and timeline when this should turn around. I hope you get to 100% soon.
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I was diagnosed with this and share your struggles. The mind can go to a dark place, I have muscle pain and twitches and carpal like syndrome in the hands, glad its tIND and not something more sinister. It is reversible and I suppose a price worth paying for getting your blood sugar down.
 
Firefly1 said:
I have this. Google Insulin Neuritis and Treatment Induced Neuropathy.
Click to expand...
Hi try a extremely low carb diet unfortunately with type 1 diabetes and high sugar levels you don't see the damage until its to late my sugar levels was always high no matter how I tried to get them lower. after 10yrs of struggling I ended up with Neuropathy. Gastroparesis. And lost my eye sight my eye sight went down hill so fast I was driving and working felf fine got a few floaters and when to see doctor and had to have emergency laser treatment and no matter what they did they could not save my eye sight I had lots of laser treatment and 4 eye operations and injections in the eyes but sadly within 3 month I was registered blind. So yes it is so important to get your bloods under control before it's to late
 
Prince4 said:
I was diagnosed with this and share your struggles. The mind can go to a dark place, I have muscle pain and twitches and carpal like syndrome in the hands, glad its tIND and not something more sinister. It is reversible and I suppose a price worth paying for getting your blood sugar down.
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I have had muscle twitching for years. Don't know if it is diabetes related, as it started well before diagnosis. It's annoying! Any remedy suggestions?
 
acjohnston1992 said:
Good Afternoon,

I'm a 30 year old Male, diagnosed with type 1 diabetes around 8 years ago and to be completely honest my control has always been poor. My last Ac1 was around 11% and I have been working to bring this down over the past couple of months. I have brought my average meter readings down from 14/15 to 10/11 in the past 3 months or so.

Around 2/3 weeks ago I noticed a very sudden burning sensation in both of my thighs, this has since spread down to my lower legs (but my feet feel fine) and whilst not painful, is very noticeable. It seems to be worse when I am wearing tight trousers, and goes away almost completely when I wear loose fitting shorts. Does this sound like peripheral neuropathy? I assumed P.N began gradually, typically starting in the feet, not the upper legs?

I spoke with my doctor and he suggested it might be 'inflamed nerves' due to the sudden drop in my blood sugars. However, I'm not 100% convinced and wanted to know if anyone had any similar experiences?

Any advice would be much appreciated :)
Click to expand...
Just a thought,any lower back problems?... you will get tingling and burning sensations in your thighs and in if you rub the area continuously you will develop muscle spasms... you will know about it as the pain is severe.
 
Some posts in the thread are bordering on diagnosis, a gentle reminder from the mod team that diagnosing and giving medical advice is against forum rules, ( see rule A11 in the forum rules & ethos which can be found here https://www.diabetes.co.uk/forum/threads/community-ethos-forum-rules.50278/ and linked in mod signatures) please continue to share your experiences and tips but don’t make assumptions or suggestions of what the condition is likely to be, we are not doctors or privy to any medical notes

Thanks guys
 
My feet are sometimes purple-ish, one ankle is getting steadily bigger than the other, they always feel hot (which is nice out of doors in winter) and I always feel I'm wearing flip-flops. I pass the diabetes foot test every year (we may draw our own conclusions from that, or not), and a neurophysiologist has stuck electric needles in me and written a report I can't understand and my GP isn't inclined to get involved with when there are many patients with treatable conditions queuing up. So basically I'm more worried whether the celeriac seeds will come up this year. I'm always pleased when forum members find a solution to their foot problems but while I can walk I'm fine and grateful.
 
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.
 
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Prancy said:
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.
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Yerp that happened to me, I had to stop taking the supplement as I was getting weird and wonderful symptoms. Don't get them now so I am putting down to B12 overload.
 
Lainie71 said:
Yerp that happened to me, I had to stop taking the supplement as I was getting weird and wonderful symptoms. Don't get them now so I am putting down to B12 overload.
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Yes, I have thin foot fat pads too. I’d love to see more about your experiences, as they sound familiar. I’m trying to not panic, stay focused and hope for the best. I’ve read so much about all kinds of conditions, causes, symptoms, etc. I did find a case study of a woman’s recovery with B12 deficiency that is very inspiring. Hanging on to hope. If it’s caused by something else, like BG, I’m praying that goes well too. The stress is incredible. How did you cope?
 
Checking in on everybody in this thread! I noticed I posted earlier about a flare up in June of 2023. Well, I can report that since that time things got better and better. Up until a couple of weeks ago, I barely noticed the burning much anymore. Some mild discomfort at night, but tolerable for sure. Well guess what? Another flare up! I really don't know why, but I have had a lot more burning the past couple of weeks. Blood sugar is in good shape. Really not sure what the trigger could be. Perhaps eating a little more sugar during the holidays? Anyway, hopefully the pain fades again soon like it did before.

How are the rest of you doing with it?
 
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