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Transcript — Programme 124: Diabetic Neuropathy

Man­ag­ing neu­ro­path­ic pain relat­ed to dia­betes, and how to adapt diet to treat the disease

To lis­ten to the pro­gramme, please click here.

This edi­tion of Air­ing Pain has been sup­port­ed by a grant from The Champ Trust and Foun­da­tion Scotland.

Accord­ing to the most recent Scot­tish Dia­betes Sur­vey in 2018, there are an esti­mat­ed 304,000 peo­ple liv­ing with a diag­no­sis of dia­betes in Scot­land, around 5% of the pop­u­la­tion. A long-term effect of dia­betes can be the devel­op­ment of dia­bet­ic neu­ropa­thy. This edi­tion of Air­ing Pain focus­es on neu­ro­path­ic pain in peo­ple with dia­betes, and how the X‑PERT dia­betes cours­es helps peo­ple to deal with the com­pli­ca­tions that arise when liv­ing with diabetes.

First up, Paul Evans speaks to David Ben­nett, Pro­fes­sor of Neu­rol­o­gy at the Uni­ver­si­ty of Oxford, who out­lines the dif­fer­ences between type 1 and type 2 dia­betes and how the ini­tial treat­ment plan dif­fers between the types. Pro­fes­sor Ben­nett then goes on to describe how neu­ropa­thy devel­ops in peo­ple liv­ing with dia­betes and how neu­ro­path­ic pain manifests.

Paul then talks with Steve Sims, who lives with dia­bet­ic neu­ropa­thy as a result of type 2 dia­betes. Paul and Steve dis­cuss how they have adjust­ed their diets to deal with type 2 dia­betes and how the X‑PERT dia­betes course has helped them to adjust to liv­ing with diabetes.

Issues cov­ered in this pro­gramme include: Dia­betes, the dif­fer­ences between type one and type two dia­betes, dia­bet­ic neu­ropa­thy, dia­bet­ic retinopa­thy, nutri­tion, diet, insulin lev­els, glycemic con­trol, risk fac­tors of dia­betes, periph­er­al vas­cu­lar dis­ease, foot pain, burn­ing pain, gabapenti­noids, and sup­port groups.


Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern. The UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain, and for those who care for us. I’m Paul Evans. And this edi­tion of Air­ing Pain has been fund­ed by a grant from the Champ Trust and Foun­da­tion Scotland.

2020 has been des­ig­nat­ed the Glob­al Year for the Pre­ven­tion of Pain by the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain. Their cam­paign is focus­ing on pro­tect­ing against the onset of pain, pre­vent­ing pain from becom­ing chron­ic or recur­ring, and reduc­ing the long-term con­se­quences of pain. Well, in this edi­tion of Air­ing Pain, we’ll be look­ing at all three of those tiers, through one con­di­tion that we’re all, young and old, sus­cep­ti­ble to get­ting: diabetes.

Dave Ben­nett: There is a kind of para­dox, and patients of mine ask me, ‘Doc­tor, I don’t under­stand. My feet are numb. So I touched them and I can’t feel any­thing, but they are con­tin­u­ous­ly painful’.

Evans: And regard­less of what caus­es your chron­ic pain, we look at the ben­e­fits of shar­ing expe­ri­ence with like-mind­ed people

Steve Sims: Par­tic­u­lar­ly if you’re new­ly diag­nosed or you’ve got a prob­lem which you’ve not had before. The chances are when you come into the group, some­body will have expe­ri­ence of it.

Evans: The Scot­tish Dia­betes Sur­vey in 2018 esti­mat­ed that there were over 304,000 peo­ple with a diag­no­sis of dia­betes in Scot­land. That’s over 5% of the pop­u­la­tion. Between 10 and 15% of those have type one dia­betes, with type two account­ing for the remain­der. Chron­ic com­pli­ca­tions aris­ing from dia­betes are numer­ous, but include eye­sight prob­lems, kid­ney func­tion, nerve dam­age or neu­ropa­thy, and more. But before we get to that – the two types of dia­betes, type one and type two, why the dis­tinc­tion? Pro­fes­sor Dave Ben­nett is Pro­fes­sor of Neu­rol­o­gy at the Uni­ver­si­ty of Oxford. He’s also Con­sul­tant in Neu­rol­o­gy at Oxford Uni­ver­si­ty Hos­pi­tals Foun­da­tion Trust.

Ben­nett: Type one dia­betes usu­al­ly is a type of dia­betes that comes on in chil­dren or young adults. It’s prob­a­bly trig­gered by the immune sys­tem, and it’s direct dam­age to the pan­creas, which is the part of the body that pro­duces insulin, so that you get vir­tu­al­ly no insulin being pro­duced. And the issue there is that peo­ple with type one dia­betes, they real­ly need to be treat­ed with insulin, cer­tain­ly that’s key to their sur­vival, and they would get very high blood glu­coses with­out insulin.

Type two dia­betes, not exclu­sive­ly, but it tends to have a lat­er age of onset, the under­ly­ing basis of the dis­ease is dif­fer­ent. It’s prob­a­bly a com­bi­na­tion of pro­duc­ing maybe less insulin, not the kind of com­plete lack of insulin pro­duc­tion that you see in type one, but less, and also the body being less respon­sive to the insulin, [which is] some­thing called insulin resis­tance. So par­tic­u­lar­ly, the mus­cles are very impor­tant in the way you respond to insulin. And it’s that gener­ic gen­er­al resis­tance to insulin, that is the source of the prob­lem. And type two dia­betes – cer­tain­ly when it’s ini­tial­ly diag­nosed – you don’t have to be treat­ed with insulin, because you’ve got some basal insulin being pro­duced. It’s often ini­tial­ly treat­ed with oral med­ica­tion, and with diet. And then some peo­ple, if they have par­tic­u­lar dif­fi­cul­ties with glu­cose con­trol, may ulti­mate­ly be treat­ed with insulin, but it’s not an absolute­ly essen­tial part of the treat­ment from the beginning.

Evans: Well, Steve Sims who lives in Cardiff has type two dia­betes, and he does take insulin.

Sims: The major effect from dia­betes is hav­ing to take more note of what I eat. The fact that in restau­rants, for instance, they won’t tell you quite often what’s in it. So it makes it dif­fi­cult to judge them, what you can eat and can’t eat.

Evans: It’s car­bo­hy­drates that you have to be care­ful of, isn’t it?

Sims: I would­n’t say you’ve got to be care­ful of [it]. Again, obvi­ous­ly, you’ve got to be aware of what the car­bo­hy­drate con­tent of a meal is.

Evans: Well, I’m type two dia­betes, as well, a fair­ly new type two dia­betes. And my GP sent me on an expert pro­gramme. It’s called the X‑PERT Pro­gramme. And the biggest shock to me when I start­ed this pro­gramme was we walked into the room – [there was] about fif­teen of us – it was tak­en by a dia­betes spe­cial­ist nurse and a nutri­tion­ist. The biggest shock was the pack­et of bis­cuits on the table in front of me. You go in and you think that this, this is going to be a ‘thou shalt not’ course.

Sims: Well, we all need car­bo­hy­drates, because we con­vert that into glu­cose, and that’s what gives us the ener­gy for our mus­cles, etc. So we’ve got to have so much. The prob­lem is that with, I would say the British diet or West­ern diets, per­haps, it does have a ten­den­cy to be car­bo­hy­drate-loaded. You’ve only got to think of a pub meal. What you would eat at home, per­haps might con­tain thir­ty or forty grams of carbs. Most pub meals are eighty or nine­ty grams of carbs. For some rea­son or oth­er with­in our cul­ture, we’ve had a ten­den­cy to [eat a lot of] car­bo­hy­drates, pos­si­bly, because in the past, I sup­pose we were all involved in a lot more man­u­al labour than we are now, so we actu­al­ly burned it off, which is point of eat­ing it. But we’ve still got that habit, you know, the nice roast din­ner and all the rest of it. You know, I’ve known peo­ple who have a treat every day, and then won­der why their dia­betes is out of con­trol, or why their weight’s going up as well. No, you don’t have a treat every day, you have a rea­son­able diet, and as any dietit­ian will tell you, you just stick to a rea­son­ably low-fat, high-fibre diet.

When I did my X‑PERT course, that’s one thing that sur­prised me with the dieti­tians and the dia­betes spe­cial­ist nurs­es that we had there. [They] were a lot more open mind­ed. So if you said to them, you know, ‘I have prob­lems walk­ing any dis­tance because of prob­lems with my legs’. Their atti­tude was, ‘Yeah, okay, fine. Let’s look at what prob­lems that’s caus­ing, [because] we’ve got to be able to do it’. So they say, ‘Well, alright, don’t walk very far. So walk a lit­tle bit and stop, walk a lit­tle bit and stop.’. Which is, if I’m open about it, what I have a ten­den­cy to do, or I use a walk­ing stick or some­thing to help take the weight off. But they were will­ing to look at that, and incor­po­rate that into what they said. You have to look at the whole human being not just our condition.

Evans: We talked about the X‑PERT pro­gramme. The edu­ca­tion pro­gramme [that] we’ve both done, pre­sum­ably – you like me – at the start of your dia­betes journey?

Sims: I did one recent­ly as well. They brought out a new one, which is specif­i­cal­ly for peo­ple on insulin. And that was a real eye-open­er, it’s total­ly changed how I treat my dia­betes now. I was inject­ing twice a day, I now inject five times a day, but I inject [in response] to what I eat. And that was the dif­fer­ence on that course.

Evans: Explain that to me.

Sims: I use an app on the phone – that dread­ed tech­nol­o­gy comes in again – and I can work out the car­bo­hy­drate with­in a meal. I’ve got it set up so that I can then use that infor­ma­tion, I check my blood glu­cose lev­els, I will then put that infor­ma­tion in on the app, it will then tell me with the car­bo­hy­drate, how much insulin I need for that meal. So I can then adjust with fast-act­ing insulin for that meal.

Evans: I don’t take insulin. I’m just won­der­ing, does that give the sort of per­mis­sion to do what­ev­er you like, to eat what­ev­er you like? Or is there an edu­ca­tion side with that, like, ‘Hang on, you still have to be careful’.

Sims: You can fall into the trap of just work­ing out what’s in there, and as I say, take as much insulin as you want. You can do that on the odd occa­sion, obvi­ous­ly, but no, part and par­cel of the course [is that] you still need to look at what you’re eat­ing. But it appre­ci­ates the fact that, for instance, if you go out for a meal, you haven’t got a lot of con­trol over what actu­al­ly ends up on your plate. There’s a psy­cho­log­i­cal ele­ment in it as well, as it’s giv­ing me more con­trol over my own life. So rather than the dia­betes, con­trol­ling what’s going on, I have some con­trol over the dia­betes. So I can rec­om­mend the X‑PERT course, to be hon­est, any­body with dia­betes should get on it.

Evans: Well, this is some­thing I’m learn­ing too. There are actu­al­ly three ver­sions of the X‑PERT course and ‘expert’ is spelled X‑PERT, not to be con­fused with the expert patient pro­gramme. So, one course is for the pre­ven­tion of dia­betes. It’s an inten­sive lifestyle pro­gramme aimed at reduc­ing risk of devel­op­ing type two dia­betes for peo­ple at high­er risk. The next course is for peo­ple who have type one or type two dia­betes. That’s the one both I and Steve went on, and I can thor­ough­ly rec­om­mend it. And then there’s the course that Steve men­tioned and rec­om­mends for peo­ple with type one or type two dia­betes, and who are treat­ed with insulin.

Ask your GP or prac­tice nurse for more details, or go to the web­site diabetes.co.uk/education for more details of the X‑PERT course and oth­er dia­betes man­age­ment pro­grammes. Well, of the com­pli­ca­tions that can occur with dia­betes, that I men­tioned ear­li­er, it’s neu­ropa­thy and the pain that comes with it that I want to focus on. Pro­fes­sor Dave Bennett.

Ben­nett: Neu­ropa­thy gen­er­al­ly relates to the periph­er­al ner­vous sys­tem, and the way you can think about that is your periph­er­al ner­vous sys­tem con­nects motor neu­rons which are going to dri­ve your mus­cles from the spinal cord to the mus­cle. So that they pro­vide the sig­nal that makes your mus­cle con­tract and so that you can move, and the periph­er­al nerves also car­ry infor­ma­tion back from your sen­so­ry nerve fibres that respond to sen­so­ry stim­uli such as brush­ing the skin or putting the skin on some­thing hot, and they car­ry the infor­ma­tion back again via the nerves, back to the spinal cord. It’s a way of con­nect­ing, ulti­mate­ly, your brain and spinal cord to the body.

Evans: So periph­er­al being, I pre­sume, the peripheries?

Ben­nett: The periph­ery is actu­al­ly any­thing out­side the brain and the spinal cord, because your cen­tral ner­vous sys­tem refers to the brain and the spinal cord.

Evans: Now, how does dia­betes cause neuropathy?

Ben­nett: So that’s a good ques­tion, actu­al­ly. And I wish I could sit here and give you one very clear answer. Under­stand­ing of their mech­a­nisms is still some­what debat­ed. We know cer­tain things about it. So dia­betes is a prob­lem relat­ing to con­trol of your blood glu­cose. And if you have dia­betes, then you either pro­duce less of a hor­mone called insulin, which is need­ed to low­er blood glu­cose, or your body’s resis­tant to the effects of insulin. And the end result of that is – you have an aver­age [of glu­cose] over the course of a day – some­one with dia­betes, their blood glu­cose is high­er than the gen­er­al population.

And we know that there is a rela­tion­ship between how high that blood glu­cose is and your risk of get­ting neu­ropa­thy. So part­ly, the risk of neu­ropa­thy is relat­ed to what we call glycemic con­trol, which is the med­ical word for what your blood glu­cose is, on aver­age. But there are oth­er fac­tors as well. So we also know that if you have par­tic­u­lar­ly high lev­els of lipids, by which I mean things like cho­les­terol, that is also a risk fac­tor for dia­bet­ic neu­ropa­thy. So we know some­thing about the risk fac­tors, what we don’t real­ly know is the exact mech­a­nisms of the dis­ease. Now, there’s the­o­ries. So one of the the­o­ries is actu­al­ly one of the kind of gener­ic issues with dia­betes – is that the small blood ves­sels don’t func­tion as well as they should. So a good exam­ple of that is some peo­ple with dia­betes get dia­bet­ic retinopa­thy. And that is a prob­lem, essen­tial­ly, of the blood ves­sels with­in the reti­na in the eye. And that’s why peo­ple with dia­betes need reg­u­lar eye checks.

Well, the nerve, like any oth­er tis­sue in the body, has blood ves­sels in it. And the health of the nerve is depen­dent on how good that blood sup­ply by those blood ves­sels is. So one like­ly prob­lem in dia­betes is an issue with the blood sup­ply to the nerves. But there are oth­er fac­tors. So the fact that you have this high glu­cose, that can then give rise to mod­i­fi­ca­tions of pro­teins in your body and change in the metab­o­lism, that par­tic­u­lar­ly impact on the way that nerves work. And so for instance, an anal­o­gy would be, [if] we were sit­ting in an audi­to­ri­um today that was about forty metres long. And if your periph­er­al neu­ron – like your sen­so­ry neu­ron – if you were to say that that is the size of that audi­to­ri­um, [then] what we call the axon, which is the bit that car­ries the elec­tri­cal sig­nals, which con­nects to, for instance, the skin or the mus­cle, [and] the anal­o­gous sit­u­a­tion would be the axon goes all the way to Paris.

Now, that is a big chal­lenge for some­thing to get car­gos – such as every­thing you need to keep your nerve healthy – [across] all that dis­tance. And one of the things that that can hap­pen in dia­betes is that the sup­port of those axons begins to fail, because of the changes in metab­o­lism and the altered blood sup­ply. And that is one of the key events that caus­es dia­bet­ic neuropathy.

Evans: So explain how it devel­ops, and what it feels like.

Ben­nett: The symp­toms of dia­bet­ic neu­ropa­thy – usu­al­ly, the symp­toms that patients notice – are to do with sen­sa­tion, and the typ­i­cal fea­tures that they might have [are] … because of this chal­lenge, which we did speak about nerves – one of the things they need to do is get the kind of the nutri­tive func­tions, the trans­port of all the things those nerves need to sur­vive, needs to go over a real­ly long dis­tance. That then makes sense, actu­al­ly, as it is the longest nerves in dia­betes that are affect­ed first. So in fact, the place that most peo­ple with dia­betes first not­ed prob­lems is their feet. And what they would notice, for instance, is that their feet may feel numb. And that numb­ness may very grad­u­al­ly, over months or years, kind of spread up towards the ankles, or if it was severe, up towards the knees, they may notice pins and nee­dles. So that sen­sa­tion if you’ve crossed your leg for a peri­od of time, which is quite unpleas­ant, actu­al­ly, and they may not, of course, crossed the leg and they may just notice that spon­ta­neous­ly. And also pain, which is again, usu­al­ly most com­mon­ly in the feet, it can have a nasty kind of burn­ing qual­i­ty to it. Usu­al­ly it’s more severe at night than it is dur­ing the day. If the neu­ropa­thy pro­gress­es, they might notice prob­lems in oth­er parts of the body, such as the hands, which again, are rel­a­tive­ly long nerves, but usu­al­ly it’s the feet where we see the first problem.

Evans: Pro­fes­sor Dave Ben­nett. Steve Sims has dia­bet­ic neuropathy.

Sims: It’s not just pain, you also have the oth­er effect, which is [that] I have very lit­tle feel­ing in my feet. I’m not get­ting the sen­sa­tions from my feet that tell me that I’m bal­anced. So that was the first effect I had with it. So this is why I’ve got handrails, put here on these steps, and on the steps in the front, so that at least I can main­tain my balance.

Again, if I’m walk­ing, I have a ten­den­cy, you know, for walk­ing any dis­tance I use a walk­ing stick, main­ly because it gives me anoth­er point of ref­er­ence. That was the first effect I found with neu­ropa­thy, the pain came lat­er. It’s a dif­fi­cult pain to explain. Because it’s ran­dom. It always hits the same areas, but it does­n’t always feel the same. Some­times it can be just as sort of a minor nig­gle. Oth­er times, it can be that strong, it will bring tears to your eyes. And it might last any­thing from a cou­ple of sec­onds to three, four or five hours. But then it’ll sud­den­ly stop and it will just turn itself off. That is prob­a­bly one of the most dif­fi­cult things to deal with.

It’s not too bad dur­ing the day when you’re up and about. Because chang­ing your weight around, mov­ing around, can ease it. Most of mine is in the feet, [but] you can get in the hands as well – most of the periph­ery nerves. But it’s at night it’s the worst. Whether or not hav­ing weight on your feet actu­al­ly makes any dif­fer­ence [to] the pain, or whether it’s if it’s a dis­trac­tion from the pain. You can take painkillers, as I do, at night, some­times if it’s real­ly play­ing me up. The trou­ble is that they will only dull it, they won’t get rid of it. They’ll just dull it off. Mind you, some­times you can, as I nor­mal­ly do, take parac­eta­mol – I can take two parac­eta­mol and the more that I take them, it switch­es itself off – it is that ran­dom. It’s real­ly dif­fi­cult, you know. I’ve had oth­er cas­es where I prob­a­bly had about half an hour sleep through the night, because what will hap­pen is it will sud­den­ly calm down, so you drift off to sleep, [then] ten min­utes lat­er, it starts back up again.

I end up with a few dif­fer­ent types of pain, as well. On my left foot, it’s as if some­body is dri­ving a spike up between my lit­tle toe and the toe next to it. Lit­er­al­ly, dri­ving it into my foot between the toes. And then that pain will grow until it grows down the side of my foot. When I spoke to one of the nurs­es about it, she said well, what it’s doing is it’s fol­low­ing the track of the nerve.

On my right foot, I end up with two or three dif­fer­ent effects. Some­times it’s like a prick­ling across the top of my foot. And again, that pain will grow. I also get, on the side of that foot, like a fric­tion burn. Some­times if I turn over, so I take pres­sure off that foot, that [pain] will go. That’s one of the prob­lems with it: it’s ran­dom. And I found out some­thing else about it some time ago – I actu­al­ly passed out while I was giv­ing blood, and they thought I might have had a heart attack, because many years ago I did have a heart attack, so my ECG is a bit weird. Talk­ing to one of the doc­tors after­wards – as it was I just passed out, it was warm and I just keeled over – but he said the thing they were wor­ried about is because of the neu­ropa­thy, you may not suf­fer with pain from a heart attack. It can affect the nerves around the heart as well, that I was­n’t aware of until he said. To some extent I wish he had­n’t told me. You know, ‘yes, it’s nice to have the infor­ma­tion, but can you tone it down a bit on occasion?’

Ben­nett: Because one of the dif­fi­cult issues of dia­betes – at the same time as you may have a dia­bet­ic neu­ropa­thy – is that some patients with dia­betes have prob­lems with the blood sup­ply to the legs. And you can have this com­bi­na­tion of where there’s not enough blood going to the feet, and at the same time, you’ve got loss of sen­sa­tion in the feet. And that’s why you might hear this term the ‘dia­bet­ic foot’. That’s why you will hear the doc­tors say it’s very impor­tant that you look after your feet, because, num­ber one, you could injure the feet and not feel it. Some­one that does­n’t have dia­bet­ic neu­ropa­thy might walk along the floor and might just stub their toe or might stand on some­thing sharp, you know, [and] they would know that there was a prob­lem there, [but] some­one with dia­betes might have some­thing in their shoe rub­bing them, and get a nasty blis­ter, and they they’re com­plete­ly unaware of it. And then the sec­ond thing is, at the same time as get­ting these injuries, their body’s less good at heal­ing itself, par­tic­u­lar­ly because the blood sup­ply to the feet is not as good. So you’re more like­ly to get infec­tions or ulcers on the feet. And that’s why it can be this dif­fi­cult com­bi­na­tion of both neu­ropa­thy and what we call periph­er­al vas­cu­lar dis­ease and dia­betes, that [means that] peo­ple real­ly need to look after their feet.

Evans: I guess this is why, in my annu­al dia­betes check-up, the dia­betes nurse tick­les my feet, and puts a tun­ing fork on it, and says, ‘Can you feel it?’

Ben­nett: Yes, the tick­le of the feet is prob­a­bly not a tick­le with her fin­gers, it’s prob­a­bly a lit­tle monofil­a­ment. So it’s a lit­tle fil­a­ment. And she touch­es that fil­a­ment to the skin and says, ‘Can you feel that?’ So then she’s check­ing for sen­sa­tion. So that’s see­ing that the sen­so­ry nerve fibres can car­ry that infor­ma­tion. If you think about it, they’re car­ry­ing trans­mit­ting infor­ma­tion from the skin, to the spinal cord and then ulti­mate­ly up to the brain. She’s test­ing two dif­fer­ent types of nerve fibres. So you have a kind of nerve fibres that will car­ry infor­ma­tion about touch and then there’s also nerve fibres that can detect rapid­ly chang­ing vibra­tions, [and] that’s what the tun­ing fork is doing, it’s caus­ing that vibra­tion, and she’s check­ing that you can feel the vibra­tion on the toe as well.

So it’s great that she’s doing that and the idea is she’s screen­ing for dia­bet­ic neu­ropa­thy. And obvi­ous­ly, the mea­sures you would take if some­one had dia­bet­ic neu­ropa­thy, is [that] you may look again at how can we opti­mise what we call your glycemic con­trol – the blood sug­ar con­trol. And also mea­sures to real­ly look­ing after the feet, mak­ing sure that you shoes are… [that] you’re check­ing the feet at the end of the day, that you might need to go and see a podi­a­trist – to keep an eye on the feet, those kinds of measures.

Evans: So hav­ing estab­lished what dia­bet­ic neu­ropa­thy is, how do you treat it?

Ben­nett: I would love to sit here and say to you, ‘If some­one has dia­bet­ic neu­ropa­thy, we’ve invent­ed a tablet, you take that tablet, and it’s going to make your nerves regrow’. But I can’t, [because] that has not been invent­ed yet. So there is research into that, and some of that we’ve dis­cussed at this con­fer­ence, but we don’t have any­thing yet that makes nerves regrow. There have been clin­i­cal tri­als of tablets to try and help dia­bet­ic neu­ropa­thy and unfor­tu­nate­ly, so far, all of those clin­i­cal tri­als of tablets for dia­bet­ic neu­ropa­thy have essen­tial­ly failed. So tri­als that opti­mise glycemic con­trol have worked, par­tic­u­lar­ly for type one dia­betes, but tri­als [that] have tried to take a new tablet to pre­vent dia­bet­ic neu­ropa­thy have not worked.

But tri­als of weight loss and exer­cise are show­ing sig­nals of suc­cess. There’s real­ly quite a good evi­dence base that keep­ing fit and doing exer­cise is incred­i­bly good for your nerves. I mean, it kind of makes sense, but there is actu­al­ly some sci­en­tif­ic evi­dence for that. And actu­al­ly, they lit­er­al­ly count­ed the num­ber of nerve fibres in the skin, then got some sort of exer­cise pro­gramme, lose weight and, three months lat­er, the num­ber of nerve fibres in skin has increased. And so peo­ple need to take that on board – that prob­a­bly the worst thing you can do is stop exer­cis­ing, have a seden­tary lifestyle, [because] that is not good for your nerve function.

Evans: We’re not talk­ing about reversing?

Ben­nett: No, I am. In terms of exer­cise, I am. I’m say­ing [that] you’re tak­ing peo­ple that have a low nerve count, and then you’re get­ting them to exer­cise, and the nerve count increases.

Evans: For both forms of diabetes?

Ben­nett: Most of that data is on type two dia­betes, as far as I’m aware.

Evans: If some­body does have pain as a result of their dia­betes – or per­haps they don’t know it’s as a result of their dia­betes – if some­body has pain, and they are dia­bet­ic, what should they do?

Ben­nett: It’s worth going to see your GP about that. I mean, there are a num­ber of caus­es of pain in dia­betes that [are] not always relat­ed to periph­er­al neu­ropa­thy. So some­times peo­ple get pain because they’re not get­ting enough blood sup­ply to the feet. Some­times you’re at high­er risk of get­ting an ulcer infec­tion. But let’s assume that some­one has dia­bet­ic neu­ropa­thy, and as a con­se­quence of that they’ve devel­oped pain. Typ­i­cal­ly, the pain would be in the feet, and usu­al­ly both feet. And peo­ple often describe it as – not always – but they often describe it as a burn­ing pain. And it may be accom­pa­nied by oth­er sen­so­ry symp­toms. There is a kind of para­dox, and patients of mine ask me, ‘Doc­tor, I don’t under­stand. My feet are numb. So I touched them and I can’t feel any­thing, but they are con­tin­u­ous­ly painful’.

The rea­son for that para­dox is that the feet are numb because the nerve fibres have, as it were, degen­er­at­ed back from the skin. So they’re no longer con­nect­ing where they should be to the skin. And this is some­thing dam­ag­ing the body; your pain fibres are com­plete­ly silent. But when they’re not con­nect­ed to where they should be, they just start fir­ing all the time. And that is almost like an illu­sion to the brain. So you can’t feel things because they’re not con­nect­ed to the skin. But the brain is get­ting this input all the time, so you’re get­ting this feel­ing of con­tin­u­ous pain. So that’s a source of that para­dox. If peo­ple are get­ting those kinds of symp­toms – well num­ber one, obvi­ous­ly, if they’re not already been diag­nosed with dia­bet­ic neu­ropa­thy, it’s worth them being exam­ined by the doc­tor and look­ing for clin­i­cal signs of dia­bet­ic neu­ropa­thy. And we’ve dis­cussed about the gen­er­al issues about diet and blood glu­cose con­trol. Then also there are tablets that we can use – med­ica­tions to try and damp down that pain.

So that pain is what we call neu­ro­path­ic pain. And all that means is it’s pain that’s due to dam­age of the ner­vous sys­tem, sen­so­ry ner­vous sys­tem. That’s all that neu­ro­path­ic pain means. But with most of those tablets, what we’re try­ing to do … If you think about it, you’ve got too much elec­tri­cal traf­fic in the sen­so­ry ner­vous sys­tem. And essen­tial­ly, tablets are try­ing to damp down that elec­tri­cal traf­fic. That’s a way of think­ing about it. And so, there’s an array of med­ica­tions that can be used and they can be pre­scribed by your GP. To give you some exam­ples, there are tablets that are gener­i­cal­ly called gabapenti­noids, [they] are one group. And there’s anoth­er group of tablets that were actu­al­ly ini­tial­ly devel­oped as anti­de­pres­sants, but not only are they anti­de­pres­sants, they are actu­al­ly anal­gesics, they clear­ly reduce pain as well. Some­times a kind of mis­con­cep­tion of patients is, ‘I went to the doc­tor, I’ve got this pain in my feet and my doc­tor just thinks I’m depressed and he just fobbed me off with an anti­de­pres­sant’. That is not the case. What I’m try­ing to explain is that these tablets – although, kind of, if you were to look them up in the med­ical text, they say would say that they’re anti­de­pres­sants – there is good evi­dence that they’re also painkillers, [that are] par­tic­u­lar­ly effec­tive for neu­ro­path­ic pain, and that’s why your doctor’s pre­scrib­ing them.

Evans: What I do know – what I have been told is, yes, con­trol it by diet, which is what I do, or you go on to med­ica­tion. But if you ignore dia­betes, it is very, very seri­ous, you can­not ignore it.

Ben­nett: I think that’s a very good point. It’s dif­fi­cult because it’s to do with human nature. And the issue is that you may not feel par­tic­u­lar­ly unwell, your doc­tor may tell you that you’ve got dia­betes, but actu­al­ly [you] say, ‘Well, in myself, you know, I’m get­ting around, I’m going to work, I’m not real­ly see­ing lots of prob­lems, what is the prob­lem?’ And of course, the issue is, is you’re stor­ing up lots of prob­lems for the future. So dia­bet­ic neu­ropa­thy, which, you know, in its ini­tial phas­es may be very sub­tle, and you might have a very mild dia­bet­ic neu­ropa­thy and vir­tu­al­ly not know it’s there. But of course, that may then progress so that you’d have numb­ness or the feet [or] severe pain in the feet. And some patients have trou­ble with what’s called the auto­nom­ic sys­tem, which is need­ed to con­trol your blood pres­sure and the way you han­dle food.

Some peo­ple may get prob­lems with their eyes. And again, ini­tial­ly, there will be a, kind of, very trained doc­tor look­ing at the back of the eye [who] might say, ‘Well, I can see some sub­tle changes there,’ and the patient says, ‘I don’t notice any prob­lems at all.’ But in five years’ time, they could have threat, then, to their sight, to their vision, because of the prob­lem with dia­betes. Same thing with the kid­neys. And again, ini­tial­ly, you might not notice any prob­lem, but if this was left untreat­ed, you might have com­plete kid­ney fail­ure and need to go on dial­y­sis or have what’s called a renal trans­plant. So it’s dif­fi­cult because you’re say­ing to peo­ple at the ear­ly stages, you need to take this seri­ous­ly and try and address it, as [much as] you can, [because] you want to pre­vent all these prob­lems in the future. Whilst, of course, human nature say, ‘Well, I feel fine now, do I real­ly need to wor­ry about it?’

It’s such a sim­ple thing to test for. Def­i­nite­ly be aware if peo­ple have symp­toms, if they’re find­ing that they’re pass­ing urine a lot, if they’re hav­ing to drink a lot, they’re always thirsty. Maybe peo­ple are get­ting lots of infec­tions, skin infec­tions that they would­n’t nor­mal­ly get. Par­tic­u­lar­ly if there’s a fam­i­ly his­to­ry of dia­betes, par­tic­u­lar­ly if there are some issues with some weight gain, say over the last few years. It’s worth get­ting test­ed for dia­betes, because we are in an epi­dem­ic; the rates of dia­betes are going up and up and up. And you can make these ear­ly changes to your health, that in the long run are going to make a mas­sive difference.

I’ll be blunt, the biggest risk fac­tor – the rea­son that we have a dia­betes epi­dem­ic is obe­si­ty and weight gain. So peo­ple can take mea­sures to try and eat a healthy diet, keep to a healthy – what we call body mass index. You can use sim­ple cal­cu­la­tors online, actu­al­ly, where you can cal­cu­late your own BMI, and it will tell you whether you’re in the kind of opti­mal range, whether you’re under­weight, whether you’re over­weight, whether you’re obese and what your risk is. And you know, it’s real­ly worth think­ing about that because then you could entire­ly pre­vent the prob­lem. I’m not say­ing that all dia­betes is due to obe­si­ty. That’s not the case. There are a num­ber of caus­es. But it is one of the risk fac­tors that peo­ple can do some­thing about. We can’t fight our genet­ics; our genet­ics are giv­en to us by our par­ents. And there’s noth­ing we can do about that. But I’m just talk­ing about things that peo­ple can do, that can make a dif­fer­ence, and that is to have a healthy lifestyle.

Evans: Pro­fes­sor Dave Ben­nett of the Uni­ver­si­ty of Oxford. As always, I’ll just remind you that whilst we, in Pain Con­cern, believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judg­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well­be­ing. He or she’s the only per­son who knows you and your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf.

You can find all the resources to sup­port the man­age­ment of chron­ic pain, includ­ing details of Pain Concern’s videos, leaflets, all edi­tions of these Air­ing Pain pro­grammes and Pain Mat­ters mag­a­zine at painconcern.org.uk. So anoth­er reminder, at the end of this edi­tion of Air­ing Pain, is to say that help and sup­port to man­age any chron­ic pain con­di­tion is avail­able from many quar­ters, not just from health­care pro­fes­sion­als, but [also] in patient sup­port groups. You can find the dia­betes sup­port group in your area at the Dia­betes UK web­site, which is diabetes.org.uk. And Steve Sims is Sec­re­tary of the Cardiff dia­betes group.

Sims: By going to a sup­port group, you will find peo­ple there with expe­ri­ence of the con­di­tion. Par­tic­u­lar­ly if you’re new­ly diag­nosed or you’ve got a prob­lem which you’ve not had before, the chances are, when you come to the group, [that] some­body will have expe­ri­ence of it. They won’t give you med­ical advice, that’s the last thing that we’re there for. But we might tell you to get back in touch with your dia­betes care team, [because] you need to talk this out with them. Or in some cas­es, it’s a mat­ter of, ‘Yeah, well I’m afraid that comes with the ter­ri­to­ry’. We also have the car­ers come to the group as well. With­out my wife I wouldn’t be any­where, yet they’re for­got­ten. With any chron­ic con­di­tion, your car­ers are one of the most impor­tant parts of your treat­ment, your sup­port. They’re vital.


Con­trib­u­tors:

  • Pro­fes­sor Dave Ben­nett, Pro­fes­sor of Neu­rol­o­gy, Nuffield Depart­ment of Clin­i­cal Neu­ro­sciences, Uni­ver­si­ty of Oxford
  • Steve Sims, Sec­re­tary, Cardiff Dia­betes Group.

More infor­ma­tion:


With thanks to:

  • The British Pain Soci­ety (BPS), who facil­i­tat­ed the inter­views at their Annu­al Sci­en­tif­ic Meet­ing in 2019 – britishpainsociety.org
  • The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain (IASP) – iasp-pain.org
  • Dia­betes UK, a lead­ing UK char­i­ty that involves shar­ing knowl­edge on dia­betes – diabetes.org.uk/.
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