Painful neuropathy!!!

Sorry to read this; hope you get some help soon. I am not much help except for the general things but I am sure there others on here who are. Keep your glucose as low as possible, eat very low carb, high fat and protein and keep active. I am fortunate in that pain killers all work for me; some people say they don't for them.

Oh, how horrible for you, welcome to the forum, by the way. Tagging @daisy1 for the welcome pack which will give you lots of good info to look at.

What meds are you on? The hive mind will probably be able to work out which ones are for what. Pregabalin (Lyrica) or gabapentin are often given for this type of pain.

IanDH said:

Hello and thanks for replying to my post. The meds I am on include: Pregablin 300MG tablets but I am not currently taking Gabapentin, so maybe this is a drug that my GP will consider prescribing for me. Ian

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You’d usually get either pregabalin or gabapentin - they are very similar, so I doubt you’d get both. Pregabalin is basically a newer version of gabapentin. I’m on 300mg pregabalin, but not for neuropathy (I have hypermobile joints, which cause me a lot of pain, and until recently trigeminal neuralgia), just reduced from 375mg, so I’d suggest there is some leeway in your doses. I was on 450mg daily until last year.

IanDH said:

Yesterday I was told by the podiatrist I am seeing for treatment on two wounds on each foot that I have got painful neuropathy after I reported symptoms of tickling, tightness and pain in the soles of both feet. She recommended I contacted my GP which I did via online consultation and I got a phone reply from one of the receptionists saying I should call the surgery on Monday next week to discuss treatment options, although she did say that one of the GP's had said I was currently receiving the strongest treatment option, although she did not say which medication I am taking this applied to.
As this painful neuropathy is really intense and is when at its peak is almost impossible to bear, I would be grateful for any advice anyone with this kind of problem can give.
Thank you,
Ian.

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I am wondering if they were referring to treatment options for the neuropathy or diabetes itself? It's important to prevent further damage from high blood sugars. Hopefully the doctor will also discuss this with you next week.

In the meantime, it's good to keep you feet elevated as much as you can, to help with healing. I have had a lower leg wound (before diabetes) and it took ages to heal and the doctor was very stern with me about staying off my feet, within reason.

Hi Ian,
I also have neuropathy in my feet but by the sound of it, nowhere near as bad as yours. I began taking R-ALA supplements a few months back and it has made a noticeable difference. Hasn't gone away but has improved. I'm about to try a TENS device when I finish a bit of research on them. I'm sorry that you are going through this. It is quite awful.
Glenn

@IanDH

Hello Ian and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it useful and interesting. Ask as many questions as you need to and someone will be able to help.


BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.
Take part in Diabetes.co.uk digital education programs and improve your understanding. Most of these are free.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
  
  
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
  

IanDH said:

Thanks the helpful advice and hopefully my GP will be helpful next week. I know what you mean about been told to stay off your feet as much as possible, that is what the podiatrist tells me to do, but having a lively Border Collie dog who needs to walk twice a day means I can't stay off my feet as much as they would like. Although one of the GP's I see has told me the opposite and to get on my feet to stop the feelings in my feet, To be honest I don't rate this last piece of advice that highly. Ian

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It's a tough balancing act... if you don't have a current wound or infection in your feet or lower legs then yes, being active is generally the right way to go.

But if you do have a wound and therefore a risk of infection, leg elevation will promote healing. Also a good idea to wiggle your feet and toes from time to time.

Collies are wonderful! And very energetic. If you're able to walk or drive your dog to a place where you can sit down on a park bench or something while he or she runs around, that is ideal. You will probably be met with a disappointed look, though.

In a person with no health issues who is under 65, the body is able to circulate blood to the toes and back again without any issues. That's why such people can have a minor foot injury heal without having to elevate their legs much, if at all.

As soon as something compromises your circulation (eg (potentially) diabetes, high blood pressure, cardio-vascular disease and more) then we have to give our feet some help to clear infections.

Blood brings oxygen and other nutrients to the injury site, and it takes away waste products such as dead blood cells and other nasties.

If there is bacteria inside the body at the site, then dead blood cells that sit around there longer than they should, provide food for the bacteria, which then multiply.

In response, the immune system kicks it up a notch and tries to fight the growing bacterial infection. It does this by trying to increase body temperature (fever), pain, redness, swelling, and blood flow.

If the increased blood flow isn't enough to fight the infection, then the bacteria can rapidly spread into the blood circulation and cause sepsis. Previous names for it were septicaemia or blood poisoning. It can happen within a matter of hours in some case.

Sepsis is a life threatening medical emergency and requires inpatient hospital treatment. If it's bad enough, you have to be in ICU and a coma may be induced.

I had leg pain, redness and swelling and hobbled to the GP practice, who promptly diagnosed a fast moving local infection and called me an ambulance. Within a few hours of arriving at the hospital I was on the mend, disaster averted. But I know people who have developed sepsis once in the hospital, and one of them sadly died from it.

I suspect the GP in your case may have been talking about staying on your feet when you don't have a wound there. If he meant doing it while you have a wound there, yikes.

IanDH said:

having a lively Border Collie dog who needs to walk twice a day means I can't stay off my feet as much as they would like.

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I can't say whether you should or should not stay off your feet, but I do know that Border Collies need a huge amount of exercise. If you decide that you would do better to walk less for the moment, could you perhaps find someone else to do some of the dog walking temporarily?

@IanDH
Everybody's different but I've actually found that my feet are better when I use them. I walk 3.5km every morning. I acknowledge that it may not work for you though. Is it worth a shot.
Glenn

Hi and welcome @IanDH

Can i ask if you are happy with your blood glucose control?
I’m not talking about your aveage readings (HbA1c). I am talking about your daily highs and lows and the variations between.

The reason I ask is because I have twice had bouts of neuropathy pain. Each time it was after a period of higher and lower blood glucose levels (typically from 4mmol/l up to 12mmol/l).
When I buckled down again (I am diet controlled) and got my blood glucose back to its usual narrower range (typically 5 to 7.5mmol/l) then the pains disappeared again.

This leads me to think that keeping blood glucose steady and controlled is basically the only thing keeping me from progressive neuropathy, and that there is damage already lurking that is on the edge of causing pain.

The fact that I can ‘reverse’ the progression and put the pain back into its box by keeping my blood glucose low and steady is very motivating!

I also take r-ALA supplements, because I have heard good things of it helping with neuropathy.

As to your feet at the moment, rest, elevation and looking after them must be better than lots of walking!
Is there anyone you could get to walk the pup for a while? I know from experience that games, training and Fetch will only get you so far...
Around here there are some great dog walkers, but of course, they charge. We use one lady occasionally, when we need dogsitting. The mutts always come back in a blissed out state of exhaustion.

Brunneria said:

Hi and welcome @IanDH

Can i ask if you are happy with your blood glucose control?
I’m not talking about your aveage readings (HbA1c). I am talking about your daily highs and lows and the variations between.

The reason I ask is because I have twice had bouts of neuropathy pain. Each time it was after a period of higher and lower blood glucose levels (typically from 4mmol/l up to 12mmol/l).
When I buckled down again (I am diet controlled) and got my blood glucose back to its usual narrower range (typically 5 to 7.5mmol/l) then the pains disappeared again.

This leads me to think that keeping blood glucose steady and controlled is basically the only thing keeping me from progressive neuropathy, and that there is damage already lurking that is on the edge of causing pain.

The fact that I can ‘reverse’ the progression and put the pain back into its box by keeping my blood glucose low and steady is very motivating!

I also take r-ALA supplements, because I have heard good things of it helping with neuropathy.

As to your feet at the moment, rest, elevation and looking after them must be better than lots of walking!
Is there anyone you could get to walk the pup for a while? I know from experience that games, training and Fetch will only get you so far...
Around here there are some great dog walkers, but of course, they charge. We use one lady occasionally, when we need dogsitting. The mutts always come back in a blissed out state of exhaustion.

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I'm not sure if Ian is still around but for anyone interested there has actually been some research on diabetic neuropathy on T2s with good glycemic control.
https://dmsjournal.biomedcentral.com/articles/10.1186/1758-5996-6-139
The gist is that HbA1c can still be low if the high spikes are of a short duration. The research suggests that these short duration spikes are very capable of causing peripheral nerve damage. It would seem that those who are predisposed to neuropathic symptoms need to look after both HbA1c as well as the levels of post meal excursions on blood sugar.
Glenn

This may sound like a silly suggestion, but can you afford to get an electric treadmill..It does not have to be expensive, even a second hand one. You could then perhaps walk your dog on the treadmill on a lead 3 times a week, which would cut down on you taking the dog out so much. So sorry to hear that you are in so much pain. I hope that you get something sorted

A difficult problem.
As other state, episodes of high glucose levels do seem to bring on pain.
You want to check that you are not Vitamin D deficient cos making replete with Vit D is harmless and sometimes helps greatly, and you want to ensure nothing else causing neuropathy like vitamin B12 deficiency or hypothyroidism; replacing vitamin D needs to know calcium level and using pregabalin needs to know renal function - so an armful of blood would be helpful.
Basically, after Vitamin D optimisation, one can use anti-epileptics such as pregabalin, anti-depressants such as duloxetine, or opiate painkillers such as tramadol (which can cause hypos itself), oxycodone, fentanyl, tapentadol; all of these agents have drowsiness as a side effect.
One can also use capsaicin cream and lidocaine patches - I have not found them particularly useful.
So, one picks a drug, works out the top dose if appropriate for your renal function, and gently increases the dose hoping that pain relief occurs before side effects. I don't think that one can say that one is stronger than another - there are very few comparative trials. It is useful to be under a doctor who is familiar with the drugs eg duloxetine seems very effective, but one needs to use it gently to start with to avoid the nausea / vomiting (start with 20 mg at evening meal to not be too bothered by the drowsiness).
If something does not seem to work, one can alsways switch to something else, but be aware that perhaps it was working a bit, and perhaps a combination of lower dose agents is needed.
I think (and I might be wrong cos I deal mainly with older diabetic people) that one can generally make the pain bearable.
Regarding elevation of feet, this may help ulcers to heal, but make sure that you do not get ulces where your heels rest.
Regarding exercise, I would check with the podiatrist, but if walking lots, make sure that your footwear and socks are good and keep checking your feet.
Best wsihes