Diabetic neuropathy?

[lenaiiyy]

Hi guys!
So I’m new to this forum I’m 25 years old and was diagnosed with type 1 diabetes back in 2013, just before my 21st birthday. My mother is also a type 1 diabetic (since the age of 5, now 48) and has had many of the complications, to name a few, dialysis, amputation and heart problems. She’s quite young, so all of this has been quite the adjustment to say the least.

Over the last two years, my legs and feet would blow up with liquid (literally I was the balloon lady waist down, could have given Kim k a run for her money) that would happen when stressed, on my feet for too long, in the heat, etc. over the last 6 months, this has slowly progressed to more so painful swelling, and after fracturing my foot at the beginning of December 2017, has blown up. It literally feels like my feet are on fire, I can’t tell if the top of my feet are numb or not, and walking is agonising. Trying to sleep is horrible and sometimes my blankets feel like giant weights resting on my feet. They go a horrible crab red when really sore, and it’s really getting me down, because I feel like it’s stopping me from living my life. I’ve had to stop going to the gym, and don’t really do anything outside of work because it’s just too painful. My medical team are throwing around the term diabetic neuropathy, and have somewhat confirmed this recently, and am now waiting to see a neurologist and a podiatrist (I’ve enever seen one before?). My endo said this could be a result of rapidly reducing my hba1c - last August I was 14.8 (Australia) and this Monday found I was 10 (just changed my diet and cut out junk food and diet soda). She said it could be that it’s more painful because I’ve brought it down so quickly, and it might not always be like this, and another interesting things was that she said she wants me to sit at 10 for the next 3-6 months just in case, as she has had patients get severe complications from being too good too quickly.

Please, has anybody else had this? And experience with neuropathy? What does yours feel like? I’m freaking out majorly, I’ve not had this for long, and I’m scared to be having such serious complications so quickly. I’ve seen within the last year first hand with mum what happens. Not looking for sweet lies or false hope, just wanted to see what others have experienced, and if anybody has any tips on how to deal with this? Currently on 75mg Lyrica twice a day, safe to say NOT working.

All the loves and thank you!

 

[Motherhen2014]

Hi guys!
So I’m new to this forum I’m 25 years old and was diagnosed with type 1 diabetes back in 2013, just before my 21st birthday. My mother is also a type 1 diabetic (since the age of 5, now 48) and has had many of the complications, to name a few, dialysis, amputation and heart problems. She’s quite young, so all of this has been quite the adjustment to say the least.

Over the last two years, my legs and feet would blow up with liquid (literally I was the balloon lady waist down, could have given Kim k a run for her money) that would happen when stressed, on my feet for too long, in the heat, etc. over the last 6 months, this has slowly progressed to more so painful swelling, and after fracturing my foot at the beginning of December 2017, has blown up. It literally feels like my feet are on fire, I can’t tell if the top of my feet are numb or not, and walking is agonising. Trying to sleep is horrible and sometimes my blankets feel like giant weights resting on my feet. They go a horrible crab red when really sore, and it’s really getting me down, because I feel like it’s stopping me from living my life. I’ve had to stop going to the gym, and don’t really do anything outside of work because it’s just too painful. My medical team are throwing around the term diabetic neuropathy, and have somewhat confirmed this recently, and am now waiting to see a neurologist and a podiatrist (I’ve enever seen one before?). My endo said this could be a result of rapidly reducing my hba1c - last August I was 14.8 (Australia) and this Monday found I was 10 (just changed my diet and cut out junk food and diet soda). She said it could be that it’s more painful because I’ve brought it down so quickly, and it might not always be like this, and another interesting things was that she said she wants me to sit at 10 for the next 3-6 months just in case, as she has had patients get severe complications from being too good too quickly.

Please, has anybody else had this? And experience with neuropathy? What does yours feel like? I’m freaking out majorly, I’ve not had this for long, and I’m scared to be having such serious complications so quickly. I’ve seen within the last year first hand with mum what happens. Not looking for sweet lies or false hope, just wanted to see what others have experienced, and if anybody has any tips on how to deal with this? Currently on 75mg Lyrica twice a day, safe to say NOT working.

All the loves and thank you!

I know what your feeling My feet and legs feel like I have boots on especially at night in bed, I also get hot feet but I purchased a metal foot cradle to keep duvet off my feet and legs as it's painful.Best money I ever spent.I sit with my legs on foot stool to keep legs straight helps a lot with swelling. Your with friends here we have the same problems always pleased to help.

 

[lenaiiyy]

I know what your feeling My feet and legs feel like I have boots on especially at night in bed, I also get hot feet but I purchased a metal foot cradle to keep duvet off my feet and legs as it's painful.Best money I ever spent.I sit with my legs on foot stool to keep legs straight helps a lot with swelling. Your with friends here we have the same problems always pleased to help.

Hi Motherhen2014!

Good to know I’m not alone in this! I think we have a cradle from when my mum needed it, might be time to dust it off and give it a go. Are you on any medication for the pain, if you don’t mind me asking? I feel like mine don’t really swell up as they used to, it’s more so feels really squishy, but my feet only. Thank you so much for replying! Xx

 

[EllieM]

My endo said this could be a result of rapidly reducing my hba1c - last August I was 14.8 (Australia) and this Monday found I was 10 (just changed my diet and cut out junk food and diet soda). She said it could be that it’s more painful because I’ve brought it down so quickly, and it might not always be like this, and another interesting things was that she said she wants me to sit at 10 for the next 3-6 months just in case, as she has had patients get severe complications from being too good too quickly.

First, congrats on reducing your HbA1C by so much. I can't help with the neuropathy (luckily I seem to be OK though I do feel slightly paranoid whenever I get pins and needles in my extremities.) If you're in Australia you're entitled to see a podiatrist at least once a year under your diabetic care plan, so it's a shame that your doctor never suggested this before. I can confirm that many diabetic issues are reversible or at least improvable with improved control, so hopefully things will look up for you soon.
Good luck.

 

[HICHAM_T2]

Something really unfortunate
If I am not mistaken, take vitamin B to relieve some of it (vitamin B1 ,B6 ,B12)

 

[Dark Horse]

Sudden improvement in glucose control can cause neuropathy but it tends to disappear if the improvement is maintained:-
https://www.ncbi.nlm.nih.gov/pubmed/20437589

The same mechanisms are thought to be responsible for a temporary worsening of diabetic retinopathy so it would be wise to make sure you have had an up-to-date retinal screening test.

 

[Motherhen2014]

Hi Motherhen2014!

Good to know I’m not alone in this! I think we have a cradle from when my mum needed it, might be time to dust it off and give it a go. Are you on any medication for the pain, if you don’t mind me asking? I feel like mine don’t really swell up as they used to, it’s more so feels really squishy, but my feet only. Thank you so much for replying! Xx

I was put on Gabapentin when I was in hospital but had to stop them as they made me weight gain. I do take paracetamol but that's for other pain problems.

 

[lenaiiyy]

Something really unfortunate
If I am not mistaken, take vitamin B to relieve some of it (vitamin B1 ,B6 ,B12)

Thanks for the tip! I’ll go out and get some, have been told that this can help also

 

[lenaiiyy]

First, congrats on reducing your HbA1C by so much. I can't help with the neuropathy (luckily I seem to be OK though I do feel slightly paranoid whenever I get pins and needles in my extremities.) If you're in Australia you're entitled to see a podiatrist at least once a year under your diabetic care plan, so it's a shame that your doctor never suggested this before. I can confirm that many diabetic issues are reversible or at least improvable with improved control, so hopefully things will look up for you soon.
Good luck.

Thanks EllieM! I’m hoping so too. I was never told about diabetic care plans until I recently went to a new GP, so we are waiting on my old GP to send over my medical file so we can get down to business. Hoping it all goes well

 

[lenaiiyy]

I was put on Gabapentin when I was in hospital but had to stop them as they made me weight gain. I do take paracetamol but that's for other pain problems.

I was told that it would make me put on weight too. It’s so frustrating, my diet I seem to have down pat, but usually I’m pretty active and used to go to the gym 3 times a week, plus I used to box and kickbox which I was hoping to get back into this year (I went to Bali last year on a major foodie trip, so I stopped just before as I figured I was going to lose progress anyways and wanted to enjoy myself), and now I’m so sore I can’t think of anything but bed when I get home from work. I don’t really feel like the meds so much though

 

[lenaiiyy]

Sudden improvement in glucose control can cause neuropathy but it tends to disappear if the improvement is maintained:-
https://www.ncbi.nlm.nih.gov/pubmed/20437589

The same mechanisms are thought to be responsible for a temporary worsening of diabetic retinopathy so it would be wise to make sure you have had an up-to-date retinal screening test.

Thanks! My endo said that too, we are hoping that once it’s been some time the symptoms won’t be worse, and they want me to try and hold my hba1c at where it is now to see. Recently went to have my eyes tested (they’re checking for everything now) and so far as they can see, no retinopathy issues as of yet (although I do have a slight prescription that requires glasses but that’s stayed the same since I was diagnosed). Off to suss out your link now

 

[Boer58]

Hi guys!
So I’m new to this forum I’m 25 years old and was diagnosed with type 1 diabetes back in 2013, just before my 21st birthday. My mother is also a type 1 diabetic (since the age of 5, now 48) and has had many of the complications, to name a few, dialysis, amputation and heart problems. She’s quite young, so all of this has been quite the adjustment to say the least.

Over the last two years, my legs and feet would blow up with liquid (literally I was the balloon lady waist down, could have given Kim k a run for her money) that would happen when stressed, on my feet for too long, in the heat, etc. over the last 6 months, this has slowly progressed to more so painful swelling, and after fracturing my foot at the beginning of December 2017, has blown up. It literally feels like my feet are on fire, I can’t tell if the top of my feet are numb or not, and walking is agonising. Trying to sleep is horrible and sometimes my blankets feel like giant weights resting on my feet. They go a horrible crab red when really sore, and it’s really getting me down, because I feel like it’s stopping me from living my life. I’ve had to stop going to the gym, and don’t really do anything outside of work because it’s just too painful. My medical team are throwing around the term diabetic neuropathy, and have somewhat confirmed this recently, and am now waiting to see a neurologist and a podiatrist (I’ve enever seen one before?). My endo said this could be a result of rapidly reducing my hba1c - last August I was 14.8 (Australia) and this Monday found I was 10 (just changed my diet and cut out junk food and diet soda). She said it could be that it’s more painful because I’ve brought it down so quickly, and it might not always be like this, and another interesting things was that she said she wants me to sit at 10 for the next 3-6 months just in case, as she has had patients get severe complications from being too good too quickly.

Please, has anybody else had this? And experience with neuropathy? What does yours feel like? I’m freaking out majorly, I’ve not had this for long, and I’m scared to be having such serious complications so quickly. I’ve seen within the last year first hand with mum what happens. Not looking for sweet lies or false hope, just wanted to see what others have experienced, and if anybody has any tips on how to deal with this? Currently on 75mg Lyrica twice a day, safe to say NOT working.

All the loves and thank you!

Long time sufferer from diabetic neuropathy. In wheelchair now, soon lose use of my hands. GET TREATMENT NOW. You can lessen the debilitating effects by Diet and exercise as long as possible. I pray this little rejoinder isn’t too depressing. I never looked for treatment, didn’t know to ask, doctors didn’t know to tell me about treatment.

 

[Pointless1]

Hi Everyone,
Im new to this Forum so be gentle with me, Ive been a type 2 diabetic for 15 yrs and never really worried about the so called bad circulation in my feet. My feet are always cold and now quite numb from diabetes. Im 65 yrs old and the numbness is gradually going up my legs ( at present just over my knees ) and getting quite sore. Just the last 2 weeks the soreness has reached my left hip and i suspected Sciatica and cant sleep at night, Ive been put on 150mg of Pregabalin twice a day and nurofen to help with the pain. Im trying to get a corisone injection this week after finding out i have damaged my L5/S1 vertabrate. This is getting so painful its not funny but noone seems to be able to put a name to this growing problem up my leg. I went on a Keto diet and lost 20kgs in a few months and my Hba is getting better. There is no swelling in my legs, just numbness, Im sick of living with pain.
Anybody going through what i am going through????

Martyn
South Australia
Australia

 

[KennyA]

Hi Everyone,
Im new to this Forum so be gentle with me, Ive been a type 2 diabetic for 15 yrs and never really worried about the so called bad circulation in my feet. My feet are always cold and now quite numb from diabetes. Im 65 yrs old and the numbness is gradually going up my legs ( at present just over my knees ) and getting quite sore. Just the last 2 weeks the soreness has reached my left hip and i suspected Sciatica and cant sleep at night, Ive been put on 150mg of Pregabalin twice a day and nurofen to help with the pain. Im trying to get a corisone injection this week after finding out i have damaged my L5/S1 vertabrate. This is getting so painful its not funny but noone seems to be able to put a name to this growing problem up my leg. I went on a Keto diet and lost 20kgs in a few months and my Hba is getting better. There is no swelling in my legs, just numbness, Im sick of living with pain.
Anybody going through what i am going through????

Martyn
South Australia
Australia

Hi Pointless1 and welcome to the forums.

You're replying to an old thread and (for the future) you usually get better replies by starting your own. However - I'm assuming you've been properly diagnosed as having diabetic neuropathy. I say this because there are other conditions that can cause very similar symptoms, and you'd need to have those confirmed/ruled out by a medical practitioner.

I had/have diabetic neuropathy, I'll come to that later.

The thing that causes diabetic neuropathy is "the distal dying back of axons that begins in the longest nerves" (Bilous and Donnelly Handbook of Diabetes 4th ed). Sensory loss/numbness is the most evident. It can lead to a number of unpleasant other conditions.

The problem for most of us is that while neuropathy and its complications is very well described in the medical literature there doesn't seem to be a lot that they do about it, other than medication and monitoring. You're already on pregabalin - the other drug ofetn used in the UK is duloxetine. I have no personal experience of either.

My neuropathy was the painful type - stabbing pains, pins and needles, burning feet. I had it from about 2014 (with a HbA1c of 44/45) until early 2020. It went (almost immediately) as soon as I brought my BG levels back to normal (36) following a ~20g carb a day diet, which I still do. I do have a residual tingle (couldn't call it pain) which, given the passge of time, is probably permanent damage.

If you've had success with keto/low carb in the past, would it be worth giving it another try? For me, it's not the diet itself, but the low blood glucose that seems to have done the trick. Best of luck.