Hi everyone, I've been told Charcot's foot is quite rare. To cut an (extremely!!) long story short, after a year in and out of a leg cast, I don't know where to go from here. Im in my mid twenties and I know its extremely rare to get complications this early - but surely they can't keep putting me in a non weight bearing cast for the rest of my life. I can't do my job, I have no income, no social life. Anyone had a similar experience or have any advice please? Thanks 🙂
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Anyone help - need advice regarding Charcot's?
- Thread starter KO1992
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Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
Hi KO19992, welcome to the forum 🙂 Very sorry to hear about the problems with your foot 
Have you been diagnosed long? How have your levels been? We do have a member who has Charcot's foot, so hopefully they will be along to help. How was it detected for you, any indications of why it might have occurred?
Have you been diagnosed long? How have your levels been? We do have a member who has Charcot's foot, so hopefully they will be along to help. How was it detected for you, any indications of why it might have occurred?
Flower
Well-Known Member
- Relationship to Diabetes
- Type 1
Hello KO1992 and welcome 🙂
I'm so sorry to hear that you are having to deal with Charcot foot at a young age. It is a devastating, life changing complication.
I was diagnosed with Charcot foot in my late 20's I'm now nearly 50 so have had many years of coping with it. I'm still here with a reasonable sense of humour although my life has changed because of it.
Has your mid foot or ankle collapsed? It can affect either or both parts of the foot. My mid foot collapsed first followed by my ankle about 18 months later. This progression isn't the norm just bad luck on my part. The treatment- as you have found out - is initially non weight bearing in a cast to try and limit the bone deformity and protect the foot from further damage. This stage can go on for many months/years and when the destructive stage of Charcot has calmed down the cast is usually replaced by an AirCast boot that is removable and allows partial weight bearing. I moved to partial weight bearing after about 2 years in a cast and did eventually get a pair of custom made shoes to accommodate the deformity in my foot. Unfortunately for me both my feet followed the same progression and I have battled on in plaster casts for many years. I have been told that my progression was very unusual and unfortunate so please don't lose heart. You can reach a position where your foot becomes stable and can support weight.
My advice is to be immensely patient and follow the advice given by the orthopaedic/podiatry team whilst keeping the best control possible of your diabetes. You need ongoing vigilance to check your feet for blisters and sores as a Charcot foot has bony projections in all the wrong places and the bone deformities cause pressure to be put through the wrong areas of the foot making it a lot more prone to ulcers. It is tempting to start to weight bear early but to give your leg the best chance of healing in a manageable way you just have to be exceedingly patient.
I don't know which part of the country you are in but when I was first diagnosed I was in the SE of England and was referred by my then hospital to a specialist diabetic foot team at Kings College Hospital who helped me and offered me great encouragement. It is worth asking for a referral to a major centre with an interest in Charcot foot as it is a rare complication that not many places will have seen very often- if at all.
It is a long, painful haul to get back to a degree of normality but with the correct ongoing treatment and months hopping in a cast you will hopefully progress through to partial weight bearing, then hopefully to having custom made shoes that protect all the damaged areas and in time you may not need to use crutches to support yourself. Don't despair, there is some good help out there but nothing happens quickly in terms of reaching stability with a Charcot foot diagnosis.
I'd already had to retire from my job due to sight loss when Charcot hit but it is very hard to suddenly lose your income source whilst battling an ongoing medical problem. I get my work pension plus some help from the government for mobility. Please ask the Citizens Advice for help on any benefits you may be entitled to due to limited mobility and loss of work income. Socially some places I just can't get to safely so tend to meet friends in coffee shops without steps and get my friends to come to me. When you are able to get to a point where you can walk unaided then life will start to open up again for you.
I wish you the very best of luck with such a challenging complication. Be very patient - very hard I know - and don't despair. I've got through the past 20+ years intact, you learn to live with it and find ways to cope. If I can be of any more help please let me know. 🙂
I'm so sorry to hear that you are having to deal with Charcot foot at a young age. It is a devastating, life changing complication.
I was diagnosed with Charcot foot in my late 20's I'm now nearly 50 so have had many years of coping with it. I'm still here with a reasonable sense of humour although my life has changed because of it.
Has your mid foot or ankle collapsed? It can affect either or both parts of the foot. My mid foot collapsed first followed by my ankle about 18 months later. This progression isn't the norm just bad luck on my part. The treatment- as you have found out - is initially non weight bearing in a cast to try and limit the bone deformity and protect the foot from further damage. This stage can go on for many months/years and when the destructive stage of Charcot has calmed down the cast is usually replaced by an AirCast boot that is removable and allows partial weight bearing. I moved to partial weight bearing after about 2 years in a cast and did eventually get a pair of custom made shoes to accommodate the deformity in my foot. Unfortunately for me both my feet followed the same progression and I have battled on in plaster casts for many years. I have been told that my progression was very unusual and unfortunate so please don't lose heart. You can reach a position where your foot becomes stable and can support weight.
My advice is to be immensely patient and follow the advice given by the orthopaedic/podiatry team whilst keeping the best control possible of your diabetes. You need ongoing vigilance to check your feet for blisters and sores as a Charcot foot has bony projections in all the wrong places and the bone deformities cause pressure to be put through the wrong areas of the foot making it a lot more prone to ulcers. It is tempting to start to weight bear early but to give your leg the best chance of healing in a manageable way you just have to be exceedingly patient.
I don't know which part of the country you are in but when I was first diagnosed I was in the SE of England and was referred by my then hospital to a specialist diabetic foot team at Kings College Hospital who helped me and offered me great encouragement. It is worth asking for a referral to a major centre with an interest in Charcot foot as it is a rare complication that not many places will have seen very often- if at all.
It is a long, painful haul to get back to a degree of normality but with the correct ongoing treatment and months hopping in a cast you will hopefully progress through to partial weight bearing, then hopefully to having custom made shoes that protect all the damaged areas and in time you may not need to use crutches to support yourself. Don't despair, there is some good help out there but nothing happens quickly in terms of reaching stability with a Charcot foot diagnosis.
I'd already had to retire from my job due to sight loss when Charcot hit but it is very hard to suddenly lose your income source whilst battling an ongoing medical problem. I get my work pension plus some help from the government for mobility. Please ask the Citizens Advice for help on any benefits you may be entitled to due to limited mobility and loss of work income. Socially some places I just can't get to safely so tend to meet friends in coffee shops without steps and get my friends to come to me. When you are able to get to a point where you can walk unaided then life will start to open up again for you.
I wish you the very best of luck with such a challenging complication. Be very patient - very hard I know - and don't despair. I've got through the past 20+ years intact, you learn to live with it and find ways to cope. If I can be of any more help please let me know. 🙂
Hi, thankyou so much for replying. I've been diabetic for 14 years and spent most of my time purposely ignoring the severity of my condition or else just trying to be oblivious to the complications, only took something like this for me to actually start looking after myself, so Im under no illusions that this is entirely my own fault. I actually hit my foot and the next morning, it had swollen to almost double the size of my other foot. I went to a&e and told the nurse there that I was really only concerned as I'm a type 1 diabetic and always been careful when it came to looking after my feet. he told me to just rest for a few days and that an X-ray was unnecessary (anti-inflammatories prescribed). After about three days I went to my GP, he tried me on all sorts, antibiotics one week, then diuretics the next week (everything from gout to fluid retention was suggested) - after another month, an X-ray was finally arranged, then an mri - then the final diagnosis of Charcots from my diabetic team. They have been very good with check ups and listening to me ranting and crying at every appointment, i'm just so frustrated. My foot is actually in really good condition, the structure is fine (no rocker bottom). To be honest, it just looks swollen (around bunion area) and there is a few degrees temperature difference between the two. I originally had a cast on for 6months, temperature and swelling came down, so cast was removed. then after about a week, swelling came back, so back in a cast again. I know I should be grateful its been caught in early stages, but I feel like I'm having to put my whole life on hold. Surely, there must be something else, I mean its not practical to just expect people to just drop work/life here and there when they think Charcots is active?! - That makes me sound really unreasonable, doesn't it? I am grateful that its at early stages, I just can't seem to get any definitive answers. Thankyou again Flower for your help, its very much appreciated 🙂 x
Flower
Well-Known Member
- Relationship to Diabetes
- Type 1
I know it is incredibly difficult to put your life on hold but unfortunately the treatment for Charcot has to be conservative and a long term cast is the only way to protect the structure of the foot. I would do everything possible to maintain the structure of your foot because that is of paramount importance and will save you from years of ongoing troubles and pain. Charcot can seem to settle and then flare up again and the only option is to go back in a cast.
It is exasperating to read that Charcot foot is still not being flagged up as a potential diagnosis when a young T1 presents at A and E with a hot, swollen foot. My mis diagnosis was similar to yours with A and E diagnosing a sprain and sending me away with anti inflammatory drugs, telling me I was too young for complications, later trying antibiotics and eventually diagnosing Charcot when the whole structure of my foot collapsed.
The diabetes/orthopaedic teams are well aware how utterly frustrating the treatment is but for the best long term outcome it is the only way.
I wish you well and hope you are soon able to move on from this difficult period of your life.
It is exasperating to read that Charcot foot is still not being flagged up as a potential diagnosis when a young T1 presents at A and E with a hot, swollen foot. My mis diagnosis was similar to yours with A and E diagnosing a sprain and sending me away with anti inflammatory drugs, telling me I was too young for complications, later trying antibiotics and eventually diagnosing Charcot when the whole structure of my foot collapsed.
The diabetes/orthopaedic teams are well aware how utterly frustrating the treatment is but for the best long term outcome it is the only way.
I wish you well and hope you are soon able to move on from this difficult period of your life.
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