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Neuropathy advice

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Tommo77

Tommo77

Member
Relationship to Diabetes
Type 2
Hi all. I’m new here and reasonably new to T2 diabetes. Diagnosed in March with a HBA1C of 117, down to 59 with the help of meds/diet, still a way to go, I know. I have also developed neuropathy in my feet which is becoming increasingly hard to deal with despite being prescribed medication. I would be eternally grateful if anyone had some advice to help relieve the pain
 
Tommo77 said:
Hi all. I’m new here and reasonably new to T2 diabetes. Diagnosed in March with a HBA1C of 117, down to 59 with the help of meds/diet, still a way to go, I know. I have also developed neuropathy in my feet which is becoming increasingly hard to deal with despite being prescribed medication. I would be eternally grateful if anyone had some advice to help relieve the pain
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I find that soaking my feet in a bucket of cold water for a few minutes helps for a while, as does going for a walk or other forms of exercise.
My major problem is that it stops me sleeping at night which is preventing me from working at the moment. I am also finding that my painkillers don't work.
 
Hi @pm133. I also find soaking my feet gives a little respite. Night time is tricky, I have a fan placed next to my bed directed at my feet which helps but not ideal. Walking also relieves the discomfort. My feet have started selling when they get hot so I’m always desperately trying to keep them cold. Just had my pain meds upped but ideally, I don’t really want to be taking them at all.
 
Tommo77 said:
Hi @pm133. I also find soaking my feet gives a little respite. Night time is tricky, I have a fan placed next to my bed directed at my feet which helps but not ideal. Walking also relieves the discomfort. My feet have started selling when they get hot so I’m always desperately trying to keep them cold. Just had my pain meds upped but ideally, I don’t really want to be taking them at all.
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I tried to come off mine this week but suffered horrible flu-like withdrawal symptoms so I'm stuck until I talk to my GP.

It's much worse when I lie down so I'm tempted to get a reclining sofa and sleep on that.
 
Hi Tommo77, I’m type1 for 40+ years and I can’t say that I have any neuropathy type pain in my feet, I’ve broken toes and both feet more than once with playing sports so I do know what foot pain is and it’s very unpleasant so my heart goes out to you. what I have suffered with for many years is RLS (restless leg syndrome) which I would consider more chronic than my diabetes, after many types of painkillers and other combinations I eventually found Gabapentin was my cure, but a side effect form this drug is pain relief, in February I broke my leg very badly and the doctors in the hospital were prescribing all sorts of barbiturates to keep the pain at bay as I have at the moment a lot of metal inside my leg so if you are suffering it might help and i don’t think it’s as bad for you as barbiturates are, worth a mention
9449D6F2-A8E8-4D40-BB14-892F2F89B3C7.jpeg
 
Hi @Paulbreen. That looks painful! I’m taking Pregabalin for my pain which, I believe, is in the same ‘family’ as Gabapentin? Just had this upped so I’m hoping this helps. I’ve never envied so much, people who have feet that work as they should! RLS Sounds awful, is this a ‘side effect’ of diabetes?
 
pm133 said:
I tried to come off mine this week but suffered horrible flu-like withdrawal symptoms so I'm stuck until I talk to my GP.

It's much worse when I lie down so I'm tempted to get a reclining sofa and sleep on that.
Click to expand...
I also find my pain is worse when I lie down. I can’t bare anything on my feet so the duvet is a no no and the fan does help a bit. Even wearing shoes for any length of time is impossible atm. I really sympathise with you, it’s just horrible.
 
I can only tell you of my own experience. 18 years ago one of many symptoms, I had burning feet. I had to put them in water or spray them with water and put them in front of a fan. They were never under the blankets even on the coldest night. I had B12 injections and since then I never had it again. Injections have been stopped and I have been told to take B12 tablets. It seems although tablets would not work for the past 17 years, because the CCG no longer want to pay for injections, I have had a miracle cure where tablets will suddenly work. However that is beside the point. I have been looking up about neuropathy and B12 and have found articles that say B12 helps neuropathy (even diabetic neuropathy), so it might be worth while to try and supplement with some B12 tablets, even though you might be eating plenty meant and dairy. If a vegetarian or vegan definitely look into B12. Give it a few months to work though. A lot of people have said they get worse for a short while before they get better.
 
Tommo77 said:
Hi @Paulbr ok een. That looks painful! I’m taking Pregabalin for my pain which, I believe, is in the same ‘family’ as Gabapentin? Just had this upped so I’m hoping this helps. I’ve never envied so much, people who have feet that work as they should! RLS Sounds awful, is this a ‘side effect’ of diabetes?
Click to expand...
Im not really sure of the connection with RLS and diabetes as I know quite a few people who suffer with it in one form or another who are not diabetic but who knows with this disease, you are correct about Pregabalin being in the same family as Gabapentin so it sounds like your getting good help with the neurological issues, I take 600mg of the Gabapentin in case that’s of any help, I think it’s a pretty low dose compared to what people are taking for the more complicated issues out there.
Keep your head up, sometimes you just have to spend some time finding the treatment that works for you.
 
Paulbreen said:
Im not really sure of the connection with RLS and diabetes as I know quite a few people who suffer with it in one form or another who are not diabetic but who knows with this disease, you are correct about Pregabalin being in the same family as Gabapentin so it sounds like your getting good help with the neurological issues, I take 600mg of the Gabapentin in case that’s of any help, I think it’s a pretty low dose compared to what people are taking for the more complicated issues out there.
Keep your head up, sometimes you just have to spend some time finding the treatment that works for you.
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I also just saw the pun in my name lol,
 
Lilian said:
I can only tell you of my own experience. 18 years ago one of many symptoms, I had burning feet. I had to put them in water or spray them with water and put them in front of a fan. They were never under the blankets even on the coldest night. I had B12 injections and since then I never had it again. Injections have been stopped and I have been told to take B12 tablets. It seems although tablets would not work for the past 17 years, because the CCG no longer want to pay for injections, I have had a miracle cure where tablets will suddenly work. However that is beside the point. I have been looking up about neuropathy and B12 and have found articles that say B12 helps neuropathy (even diabetic neuropathy), so it might be worth while to try and supplement with some B12 tablets, even though you might be eating plenty meant and dairy. If a vegetarian or vegan definitely look into B12. Give it a few months to work though. A lot of people have said they get worse for a short while before they get better.
Click to expand...
That’s really interesting. I did read a bit about B12 right at the beginning but I got a bit bogged down with lots of information about everything but I’ll definitely investigate that further, thank you!
 
Paulbreen said:
Im not really sure of the connection with RLS and diabetes as I know quite a few people who suffer with it in one form or another who are not diabetic but who knows with this disease, you are correct about Pregabalin being in the same family as Gabapentin so it sounds like your getting good help with the neurological issues, I take 600mg of the Gabapentin in case that’s of any help, I think it’s a pretty low dose compared to what people are taking for the more complicated issues out there.
Keep your head up, sometimes you just have to spend some time finding the treatment that works for you.
Click to expand...
I’m now taking 450mg of Pregabalin and the maximum dose is 600mg so, I have a bit more wiggle room.
 
The, Pregabalin sind’s like it’s a bit stronger than the Gabapentin.
I never knew about the B12, maybe it would help with the RLS too, I don’t eat a lot of meat so I’m going to give it a go, I’d rather take a vitamin than a drug any day
 
Paulbreen said:
The, Pregabalin sind’s like it’s a bit stronger than the Gabapentin.
I never knew about the B12, maybe it would help with the RLS too, I don’t eat a lot of meat so I’m going to give it a go, I’d rather take a vitamin than a drug any day
Click to expand...
Ditto!
 
Tommo77 said:
That’s really interesting. I did read a bit about B12 right at the beginning but I got a bit bogged down with lots of information about everything but I’ll definitely investigate that further, thank you!
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There are various supplements that might help. You’d need to check they didn’t interact with your meds, of course. As well as B12, there’s alpha lipoid acid and benfotiamine. The protocol is a little pricey because you start on relatively high amounts of the alpha lipoid acid and it’s not cheap, but it’s helped some people, along with very strict control of blood sugar, particularly postprandial spikes.
 
Inka said:
There are various supplements that might help. You’d need to check they didn’t interact with your meds, of course. As well as B12, there’s alpha lipoid acid and benfotiamine. The protocol is a little pricey because you start on relatively high amounts of the alpha lipoid acid and it’s not cheap, but it’s helped some people, along with very strict control of blood sugar, particularly postprandial spikes.
Click to expand...
That’s really helpful, thank you.
 
Just got some B12 today to see if that's an issue.
Took first one just now.
Will see how it goes over the next few weeks.
 
I have just been prescribed amitriptyline for my neuropathy and a side effect is that it calms my rls too. It's early days, but so far so good. During the day I can presently put up with it, but nights were a problem. I found that wrapping my legs in a woolen blanket with thermal socks on would ease things slightly.
I've seen B12 mentioned here but my levels were tested in the latest round of blood tests and considered in the normal range so I did not pursue that any further.
I certainly sympathise.
 
Iwillgetthere said:
I have just been prescribed amitriptyline for my neuropathy and a side effect is that it calms my rls too. It's early days, but so far so good. During the day I can presently put up with it, but nights were a problem. I found that wrapping my legs in a woolen blanket with thermal socks on would ease things slightly.
I've seen B12 mentioned here but my levels were tested in the latest round of blood tests and considered in the normal range so I did not pursue that any further.
I certainly sympathise.
Click to expand...
I am on amitriptyline too. 3 x 10mg pills per day and it's done nothing for me after 4 weeks.
What dose are you on and how long before it started working for you?
 
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