I was diagnosed with MODY type HNF1B diabetes back in the early 90s'.

[Neil P]

Been on insulin now for many years which appeared to be working fairly well. I had my insulin type changed last year and boy what a difference.

Last year I fell off my motorbike and was trapped for about 10 seconds, due to the neuropathy I have in my feet I didn't realise that my left heel was broken in 3 places and I have been diagnosed with Charcot Foot.
Has anyone here got the same condition and do you know how to reduce the deformity in the effected foot place?
It is really starting to affect me mentally, particularly how I am being, in my mind, discriminated against at work, any support would be greatly appreciated.

 

[Inka]

Welcome @Neil P 🙂 Sorry to hear about your Charcot Foot. That must be very difficult. There are a few people who’ve posted here with it, one being @Flower

 

[Neil P]

Hi Inka, it is very difficult, I am not the type of person to let anything stop me from doing what I enjoy, but this is driving me mad 😡

 

[Inka]

Totally understandable. It must be frustrating. While you’re waiting for more replies, you could look at this thread:

Post in thread 'New guy here.'

Mar 7, 2025

Hi and welcome @tonym68

I'm sorry you've been told you have suspected Charcot foot. It is a frightening complication and sadly awareness of it is still really low. Time is of the essence if Charcot is suspected, things can change rapidly as I found out to my cost - this was pre internet/forum and I'd never heard of Charcot nor had the Dr I saw who diagnosed a sprain.

Has your foot been put in a cast or aircast boot to protect it from damage, are you using crutches? Immobilising the affected foot/leg is the first step to protect the inflammed foot and limit any damage. Are you...

• Flower

• 
• 
• 

@Flower has posted in Post 5 above.

 

[rebrascora]

Hi and welcome from me too.

Very sorry to hear you have Charcot. Was it diagnosed as a result of the accident? Did you have any symptoms before that when you look back? Has it been imobilized and what treatment are you getting for it? Is it still unstable....ie hot, swollen etc and are you having regular scans/assessments of it.
Managing your diabetes as well as you possibly can will be a key factor in helping to stabilize it. Do you have a Libre or other CGM (Constant Glucose Monitor) to help you manage your BG levels? Which insulin(s) are you using and do you carb count?
Sorry for all the questions but it will be helpful if you can give us as much information as you can so that we can help you get the right support.

Hopefully @Flower will be along in due course as she is our resident expert on Charcot, sadly due to personal experience but it is that personal experience which makes her so knowledgeable.

 

[everydayupsanddowns]

Welcome to the forum @Neil P

Sorry to hear about getting your leg and foot bashed up coming off your bike.

Charcot foot is a nasty one. Hopefully @Flower can give you some pointers about hopefully keeping your foot as healthy as possible. Is your foot in a cast or lightweight boot?

There’s a brief overview of Charcot Foot here:

Charcot foot and diabetes

If you have diabetes and peripheral neuropathy, also known as nerve damage, you’re more at risk of developing Charcot foot. Charcot foot is a serious foot problem. But having treatment as early as possible can reduce your risk of further complications like developing a foot ulcer or needing an...

www.diabetes.org.uk

 

[Flower]

Hello @Neil P

I’m so sorry you are dealing with Charcot foot. It is a horrible complication that changes your life physically. It also puts a huge strain on you mentally dealing with daily challenges, mourning the loss of living with two functioning feet/legs and managing the constant fear of what might happen next.

In terms of reducing the deformity in your foot the choice is to use custom made orthotics- insoles & shoes to accommodate the deformity and protect the vulnerable areas or if appropriate have reconstructive surgery. Are you seen at an orthopaedic clinic or high risk podiatry clinic for ongoing care?

Surgery is a big decision & depends on the extent of the damage and whether surgery can improve your foot shape. If it is suggested to you-due to the nature of Charcot & nerve damage- it might not fully resolve the problems. I’ve had 3 ankle fusions to attach my collapsed ankle joint to my collapsed foot but I didn’t grow any new bone so am in a cast ongoing- only other option is amputation. I didn’t realise at first the implications of having nerve damage & the negative impact of diabetes on bone growth -lack of growth in my case.

Diabetes & Charcot foot are covered by the disabilitiy discrimination act DDA and should not be used to discriminate against you at work. The Diabetes UK helpline is very good at offering advice on how you can seek help and accommodations for disabilities at work.

Due to Charcot being relatively rare I find there is little understanding out there -( not on here!)- being in a cast on crutches is assumed to be a 6 week accident that will get better and not something that can alter your life. Maybe your work doesn’t understand the ongoing nature & challenges of Charcot.

I hope things settle down for you and you can get the support you need. Wishing you well.

 

[Neil P]

Totally understandable. It must be frustrating. While you’re waiting for more replies, you could look at this thread:

Post in thread 'New guy here.'

Mar 7, 2025

Hi and welcome @tonym68

I'm sorry you've been told you have suspected Charcot foot. It is a frightening complication and sadly awareness of it is still really low. Time is of the essence if Charcot is suspected, things can change rapidly as I found out to my cost - this was pre internet/forum and I'd never heard of Charcot nor had the Dr I saw who diagnosed a sprain.

Has your foot been put in a cast or aircast boot to protect it from damage, are you using crutches? Immobilising the affected foot/leg is the first step to protect the inflammed foot and limit any damage. Are you...

• Flower

• 
• 
• 

@Flower has posted in Post 5 above.

Hello @Neil P

I’m so sorry you are dealing with Charcot foot. It is a horrible complication that changes your life physically. It also puts a huge strain on you mentally dealing with daily challenges, mourning the loss of living with two functioning feet/legs and managing the constant fear of what might happen next.

In terms of reducing the deformity in your foot the choice is to use custom made orthotics- insoles & shoes to accommodate the deformity and protect the vulnerable areas or if appropriate have reconstructive surgery. Are you seen at an orthopaedic clinic or high risk podiatry clinic for ongoing care?

Surgery is a big decision & depends on the extent of the damage and whether surgery can improve your foot shape. If it is suggested to you-due to the nature of Charcot & nerve damage- it might not fully resolve the problems. I’ve had 3 ankle fusions to attach my collapsed ankle joint to my collapsed foot but I didn’t grow any new bone so am in a cast ongoing- only other option is amputation. I didn’t realise at first the implications of having nerve damage & the negative impact of diabetes on bone growth -lack of growth in my case.

Diabetes & Charcot foot are covered by the disabilitiy discrimination act DDA and should not be used to discriminate against you at work. The Diabetes UK helpline is very good at offering advice on how you can seek help and accommodations for disabilities at work.

Due to Charcot being relatively rare I find there is little understanding out there -( not on here!)- being in a cast on crutches is assumed to be a 6 week accident that will get better and not something that can alter your life. Maybe your work doesn’t understand the ongoing nature & challenges of Charcot.

I hope things settle down for you and you can get the support you need. Wishing you well.

Hi Inka,

I have just been put into the care of the Community Podiatry Team by my consultant at Musgrove Park hospital in Taunton, have also had orthotic insoles made as well which seem okay. Biggest issue I have is not being able to wear a lot of my normal shoes, I was desperate to get back on 2 wheels after my injury which I did for the first time since last July. In order to do so I had to buy a pair of motorbike boots 2 sizes bigger than normal to accommodate my deformed left foot, a bright but chilly Sunday last weekend bought a massive smile to my face as I rode, only for the second time since I bought my new Automatic Honda 750.

Thanks

Neil