Charcot foot

[Kathieleigh]

Good Afterwards Everyone .
I've joined to try and get some general advise how I can help my husband cope with his Charcot Foot . Both of his feet are affected , his diagnosis and treatment began 18 months ago . He's in an incredible amount of pain , he tries to drive .. manual car .
He feels a burden to his family ,as we can no longer do things we used to , even walking the dog , is hard for him .
I'm just glad I've found this forum .

 

[Kathieleigh]

**Afternoon **

 

[Cherrelle DUK]

Hi Kathieleigh, welcome to the forum.

Glad to have you here with us as getting support from a loved one can make the world of difference. Sorry to hear about your husbands' current symptoms, I understand how difficult the reduced mobility can be so I hope he finds some relief soon.

Has your husband been able to share his concerns with his GP? We've got quite a bit of info on the site re charcot foot so do feel free to have a look at the links below which range from personal stories to general info.

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

Jayne's story: dealing with Charcot foot

Jayne shares her experiences of coming to terms with a type 1 diagnosis and dealing with foot complications in both feet.

www.diabetes.org.uk

https://forum.diabetes.org.uk/boards/search/145580/?page=3&q=charcot+foot&o=date

As always, you're also welcome to give our helpline a call for some tailored advice.

 

[Flower]

Hello and welcome @Kathieleigh

I'm sorry your husband has been diagnosed with Charcot foot. It is a chronic, painful and disabling condition that needs ongoing vigilance for any changes in foot shape, temperature, skin blisters/ulcers and change in skin colour. I hope he is being seen at a high risk podiatry clinic. From my recent experience through Covid and ongoing my excellent high risk clinic that saw me every 8 weeks has disappeared and I'm now seen twice a year so am having to pay a private podiatrist to help me.

Has your husband been prescribed any pain relief? Is it neuropathic pain or pain from damage to bones. I would contact your GP for help with managing the pain as it can be constant with Charcot foot and makes managing the condition difficult.

Have his feet changed shape from bone and joint collapse or was he treated in time to prevent changes? Can he request another pair of custom made shoes/insoles to protect the areas that are vulnerable to pressure? I know it all takes so long to get an orthotic appointment and then the wait until the shoes are ready, trying to get some independence back can take a long time and be a real struggle.

Have you had any help/suggestions with other means of getting around, I know there are things like knee scooters that you can hire or buy to enable better mobility although if both feet are affected that is more of a challenge.

Is there any further means to appeal a PIP decision. Charcot foot is chronic and disabling and it really does limit mobility ongoing. I don't know what the rules are for further appeal as I haven't been through that process. Can you get letters from the clinics who diagnosed and treat him explaining the damage and potential for further damage and ask for help from Citizens Advice?

I can't think of anything else right now to be more helpful. Charcot foot can settle down but it takes a long time to settle and it need super patience, care and daily vigilance to try and prevent any further problems. I hope things will improve for him and he can get some pain relief to help him manage. He isn't a burden, Charcot foot is thankfully quite a rare complication - I know that's not a comfort when it happens to you - and it takes a long time to adapt to the new limitations. I know how frustrating it is to not be able to run, cycle, walk, hoover in fact do anything properly but there's ways to manage. Wishing you well.

 

[Kathieleigh]

Hi Thank you for your reply . He is still seeing a doctor at the hospital ,and sees the podiatry team ,twice a week at the moment , due to recurring blisters .
We are going to put another claim in for PIP too . The last claim he sent everything , even photos of his feet . It was a phone consultation, so going to ask for a f2f this time
Both his feet have collapsed ,due to breaks , there completely out of shape now .
Thanks Again .

 

[everydayupsanddowns]

Best of luck with your new PIP application @Kathieleigh

As his situation has changed, hopefully they will take this into account.

 

[Flower]

Hi Thank you for your reply . He is still seeing a doctor at the hospital ,and sees the podiatry team ,twice a week at the moment , due to recurring blisters .
We are going to put another claim in for PIP too . The last claim he sent everything , even photos of his feet . It was a phone consultation, so going to ask for a f2f this time
Both his feet have collapsed ,due to breaks , there completely out of shape now .
Thanks Again .

I hope your new PIP claim is successful. Charcot in both feet is really tough without a good foot to
land on and it is hard to convey the damage, struggle, pain & limitations it brings in photos and written evidence. It is a relatively rare complication that doesn’t go away sadly so I hope your husband is assessed in person.

I asked my GP for a referral to Kings College London as they run a world renowned Charcot & diabetic foot clinic. I don’t know what area you’re in but it is worth bearing in mind a referral to a bigger centre where they see and treat more Charcot feet. They helped me so much as I’ve been advised to have a below knee amputation by my local hospital and am seen once a year to review whether I can cope with an amputation. I wanted another opinion. I’m in a cast as it’s the only way to walk but they gave me the choice to stay like that if that’s what I wanted to try.

Best wishes.