Diabetic Neuropathy - Burning Feet and pain - Help Required

Omnipod

Well-Known Member
Messages
531
Type of diabetes
Type 1
Treatment type
Insulin
I have had type 1 diabetes for 13 years now and my control has not always been so good until about 2-3 years ago when I first got a complication with my eyes.
I then took my doctors advice and went on a pump.
I found the pump easier at first because Id attach the pod and press a few buttons when I needed a bolus for food. After being on the pump for a while, I soon realised that it is actually alot harder because in order for it to work effectively, you have to constantly fine tine it. Being a single male, i also had an issue with the pod constantly attached and when I went to the gym etc, getting showered or changed, it was always there and I found it to be a bit of a passion killer!

I then got the Freestyle Libre and after about 3 weeks of using the Libre, I noticed that my BG graph was very unstable. My pattern looked like an ECG. It would just be troughs and peaks throughout the day.
I then decided to try out MDI again so I went back to my GP and went back to using Tressiba / Degludec as my basal and Humalog as my quick acting insulin.
Over the next few weeks, I was comparing my graphs and I noticed that I had less peaks and troughs and that my overall pattern was more stable.

Just recently I started getting really bad neuropathy pains in my legs and feet. They feel like they are burning constantly. I went to my dr who started me on Amitriptyline but I am not sure this is helping.
I have done so much research because I feel my overall control has improved. The neuropathy might be the nerves 'waking up' again or I read that even with a good HBA1c, that it could be caused from my post prandial BG going above 7.7mmol. If the latter is the reason, then I have no idea how to stay below 7.7 after eating a meal.

Today I am going to try get some Bentofotaime, Alpha Lipoic Acid and Evening Primrose oil. I heard these have helped many people.

Has anyone who has been through this got any advice? How long does this pain last because I cannot bear it anymore. Is there anything anyone takes for immediate relief? Sometimes I feel I cannot even wear shoes because my feet are on fire. Today i woke up and Im feeling the burn in my arms :(
I have tried Nurofen, Ibuprofen and no change. Last night I took 500mg paracetemol which helped a little.

I had an appoinment with a chiropodist and he said everything was ok and that I had a very healthy blood flow in my feet.

Id like to hear from anyone who has been through this and to know what you did to overcome this and importantly how long it took for the pain and burning to go.
 

Omnipod

Well-Known Member
Messages
531
Type of diabetes
Type 1
Treatment type
Insulin
Thank you Catherinecherub. OMG that has freaked me out..... Im petrified of having the test just incase they want a nerve biopsy and a lumbar puncture.
Im going to dose up on Vitamin B12 first.
 

Snowy12

Well-Known Member
Messages
935
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Tuna,People spitting on the floor and ironing.
Hi I am type 2 and my feet are the main problem for me,today my feet are burning like mad,I did have a b12 test done along with others and my blood test came back with serum folate deficiency,you could ask your pharmacy for some folic acid to see if this helps with your feet,I have also noticed that by lowering my bs levels there has been some improvement my feet only hurt a few times a week now instead of everyday.
Hope you manage to get it under control.
Good luck

image.jpg
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Grins

Member
Messages
19
Type of diabetes
Type 1
Treatment type
Insulin
Hi @Omnipod
I am following this thread as I am experiencing the same as you (sorry I know you want to see some advice or positive outcomes rather than other people saying me too). I also cannot bear it for much longer and a lot of stuff online is focused on permanent pain relief.

I am only 36, have been type 1 for 11 years with good Hba1cs (usually 6 or just below) and in April after tightening control a little I got all those symptoms, I couldn't wear socks or shoes. My diabetic consultant said nothing to worry about, it is just the nerves waking up, like you said. I started 10mg of amitriptyline and alpha lipoic acid. In July I went into hospital with a burst appendix (not recommended) and it was only a few weeks later I noticed my symptoms had subsided but I carried on taking the amitriptyline.

In November however these symptoms came back, oddly after a slightly worse period of control while changing insulin. It is worse in the day rather than night time, particularly evening and the burning has even meant I can't stand for long. I have upped amitriptyline to 20mg and I think this helps in evening but it is making me sleepy and groggy. Today my thighs are really feeling the cold and feel like they are burning too :-(

I have also been getting numb hands on waking (small fingers) which my diabetic consultant says is not related to diabetes but this has only happened during these two periods where I have had the foot pain.

As for keeping sugars lower - at the moment I am trying to really cut down carbohydrates for better post meal levels. I have also given up gluten to see if this helps.

Make sure you have all the bloods done for B12, iron, vitamin D etc, some of these cause the symptoms too.

I will let you know if I find anything that helps. Feel for you as it is really effecting me.
 

Omnipod

Well-Known Member
Messages
531
Type of diabetes
Type 1
Treatment type
Insulin
Thank you to everyone who replies.
I will look into gluten free too.
I have just come back from Holland and Barrett. I bought B12, Niacin, Alpha Lipoic, acetyl l-carnitine, evening primrose oil and Omega 3 pure fish oil.
I am scanning my BG every 30 minutes so that I can stay below 8. Im also taking my insulin 15 mins before a meal to avoid a post prandial spike. Ill see how that goes for a few days.
Looks like Im going to have to lay off Christmas eating and drinking because I just cannot bear this anymore.

Ive been looking at low carb diets too and Im going to try snacking on almonds

Tonight, i might take 2 10mg amitriptyline tablets and see if that helps. So far today I have been managing to stay between 5 and 7. I wish the doctors knew how hard it is to stay within 5-7!!!
A morning coffee can send me up into the 10s!

Ive been on the Libre now for almost 3 months and my HBA1C has dropped by 1%. This must be attributed to my nerves waking up because my control now is the best it has ever been since 2001!

Is anyone taking Lyreca for neuropathy? Im told it is fairly expensive which is why its not easily prescribed. I been told that it works well for neuropathy pain.
 
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Snowy12

Well-Known Member
Messages
935
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Tuna,People spitting on the floor and ironing.
Hi no I am taking venlafaxine this is what my neurologist prescribed for nerve damage.
I hope you get relief soon.
 

Grins

Member
Messages
19
Type of diabetes
Type 1
Treatment type
Insulin
Thank you to everyone who replies.
I will look into gluten free too.
I have just come back from Holland and Barrett. I bought B12, Niacin, Alpha Lipoic, acetyl l-carnitine, evening primrose oil and Omega 3 pure fish oil.
I am scanning my BG every 30 minutes so that I can stay below 8. Im also taking my insulin 15 mins before a meal to avoid a post prandial spike. Ill see how that goes for a few days.
Looks like Im going to have to lay off Christmas eating and drinking because I just cannot bear this anymore.

Ive been looking at low carb diets too and Im going to try snacking on almonds

Tonight, i might take 2 10mg amitriptyline tablets and see if that helps. So far today I have been managing to stay between 5 and 7. I wish the doctors knew how hard it is to stay within 5-7!!!
A morning coffee can send me up into the 10s!

Ive been on the Libre now for almost 3 months and my HBA1C has dropped by 1%. This must be attributed to my nerves waking up because my control now is the best it has ever been since 2001!

Is anyone taking Lyreca for neuropathy? Im told it is fairly expensive which is why its not easily prescribed. I been told that it works well for neuropathy pain.

Nearly everything you are saying is what I am going through, it is quite bizarre.

What are Niacin and acetyl l-carnitine?

Do you know if Vitamin B complex tablets covers the B12? I also read somewhere that too much B6 can make neuropathy worse so I am unsure whether to take Vit B complex as this has B6.

Morning coffee - this also sends me up to the 10s, I realised only days ago that my dawn phenomenon (liver glucose dump) occurs when I actually get up, so I sometimes inject 1 or 2 units if I am going to have a coffee but not eat breakfast for a bit. Obviously be careful with this!

I hope things improve for you soon. I am struggling a lot with this, just sat through a work meeting in a total daze. I have young children and I just want to enjoy Christmas with them but can't stop thinking about my symptoms!

By coincidence I am seeing my Diabetic consultant tomorrow so will feed back if he says anything useful.
 

Omnipod

Well-Known Member
Messages
531
Type of diabetes
Type 1
Treatment type
Insulin
Niacin, also called vitamin B-3, is a vitamin your body needs for a variety of functions, especially the metabolism of energy from food. Niacin also helps your digestive tract, nerves and skin work correctly. Niacin is water-soluble, so your body cannot store it and you need to make sure you get enough every day. According to the Linus Pauling Institute, a niacin deficiency is called pellagra, and it can result in nerve damage that causes neurological symptoms.

Acetyl-L-carnitine (ALC), a naturally occurring amino acid, may be an ideal therapeutic agent to address this otherwise recalcitrant condition. ALC is potentially effective at preventing peripheral neuropathy as well as lessening neuropathic symptoms once they have developed. Both animal and human data consistently demonstrate the neuroprotective and antinociceptive effects of ALC. In addition, ALC is well tolerated without significant risk of side effects or drug-nutrient interactions.

Extracted from the evening primrose plant, this oil is rich in omega-6 fatty acids, which are important structural components of cell walls. Theoretically, supplementing the diet with evening primrose oil, which is available in pills, may boost the repair or regrowth of damaged nerves cells.
In two clinical trials, taking evening primrose oil orally improved nerve function somewhat in people with diabetic neuropathy. .

In several studies, alpha-lipoic acid appears to help lower blood sugar levels. Its ability to kill free radicals may help people with diabetic peripheral neuropathy, who have pain, burning, itching, tingling, and numbness in arms and legs from nerve damage.
Alpha-lipoic acid has been used for years to treat peripheral neuropathy in Germany.
 

Grins

Member
Messages
19
Type of diabetes
Type 1
Treatment type
Insulin
Thank you, already taking Alpha Lipoic Acid and Evening Primrose Oil, will check out the other ones!
 

Grins

Member
Messages
19
Type of diabetes
Type 1
Treatment type
Insulin
Hi @Omnipod

Saw Diabetic Consultant today. He took my concerns very seriously and did a number of checks on my feet and legs. I passed all the tests and he is happy there is no sign of severe nerve damage. He agrees the symptoms are neuropathy and says anxiety will make them worse. He wasn't suggesting I was imagining it or causing it, just that how anxious I was will make it worse, it is a vicious circle.

The positive thing that I hope helps you is that he was insistent that this is very common and very likely also temporary (in my case but your situation sounds similar!) and that any change in sugar levels can make this happen.

He has suggested some other drugs to try (and is writing to my GP). I am on the waiting list to see a Neurologist and I will have more questions and push for more tests then.

I am going back on the gluten as I need to be on gluten to make the test effective. This is something to bear in mind if you are giving up gluten too.

I am going to take all the positives from this and try and enjoy Christmas. I will continue to avoid spikes by reducing my carbs and injecting some time before food.

All the best
 

lrebecca

Member
Messages
10
I was diagnosed diabetic 6 years ago at 30 and I presented with neuropathy. Mine came on almost overnight and never left. It has been trial and error and a lot of persistence to get to a point where I can handle the constant pain I have. I found the most useful medication for pain relief has been Lyrica and MR Tramaol. I also take Amitriptyline and am allowed to top up my slow release tramadol with the regular tramadol. For a long time that was helping really well (though at night it's always a struggle to get to sleep) but I have found lately that my pain seems to have worsened. I saw a pain specialist at the hospital who said I was taking everything I could be but the next step would be a nerve blocker, which I really don't want so I left it as is for the time being. I'm sorry you are going through this pain I know how utterly demoralising it can be. I would say that you should think about at least trying different drug combinations because nerve pain, in my experience, is too bad to live with without that help. Once they got the right medication combination for me it gave me peace for the first couple of years. Good luck and I hope you have as pain free a christmas as possible.
 

Omnipod

Well-Known Member
Messages
531
Type of diabetes
Type 1
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My dr has prescribed Gabapentin / Neurontin
I read the leaflet and did some research on the internet and now im too scared to take them
 

donnellysdogs

Master
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13,233
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Not everyone has side effects and you would know witjin 6 hours. If you do... Simple, don't take another and witjin 24 hrs will be out your syst.
 

urbanracer

Expert
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Sorry @Omnipod I'm a bit late to the party.
I had burning feet for many years, usually at the end of the day. For me, the sensation has reduced significantly since being diagnosed as a T1 last October and starting to inject insulin. Whilst that may not be of much help to you, what may be useful is cooling gel. I found some stuff in Boots that is made by a Swedish company called CCS and it seems to offer (me) some benefit.
 
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