New member with T2 and Charcot Foot

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Laroc

New Member
Relationship to Diabetes
Type 2
Hi everyone, decided to join this forum as I have managed Charcot Foot with borderline Type 2 diabetes for a while now. The Charcot Foot is in both feet. It started in my right foot approximately 12 years ago and severely in my left foot almost 3 years ago. My left foot is very deformed. I have managed pretty well so far despite various surgeries The last in October 2020 in my left foot with a 7mm x13,5cm being placed through my left foot. So mobility is hard.
I have recently tried to improve my fitness and overall health by exercising using a rowing machine everyday as walking following my last surgery is difficult. Does anyone else use a rower?
I live in France and am waiting for custom shoes which are being made. I hope these will make a difference to my mobility.
I hope I can learn some things on this forum.
 
Hello @Laroc and welcome 🙂

I’m really sorry to hear about your Charcot Foot problems. I’m sure custom made shoes will help with your mobility as they’ll protect the vulnerable areas and provide cushioning for your damaged bones.

I’ve been living with Charcot foot for about 25 years and like you I have one completely deformed foot plus no ankle joint, thankfully my left foot to date doesn’t have shape deformity but keeps fracturing with multiple metatarsal and ankle fractures.

it is difficult to find an exercise with Charcot that doesn’t put too much stress and pressure through the damaged areas. I haven’t used a rowing machine as my ankle is only partly fused so in a cast long term but would think it would be a good exercise for the legs and circulation without putting excess pressure through your feet. Are you able to swim as that is an ideal non weight bearing exercise?

Do you have support from a podiatry & orthopaedic clinic ? I would run it past a medic/ someone who knows your situation to make sure you're not going to aggravate things. Best wishes with it all.
 
Thank you for your kind and helpful reply Flower. You are the only person that I have ever communicated with who suffers with Charcot Foot so far so please excuse any questions. It’s interesting to hear from someone elses experience. I’m sorry to hear the level of your situation. Not having an ankle joint must be incredibly hard In a number of ways and your mobility must be quite restricted. 25 years is a long time to have managed such a situation.
May I ask if it has progressively deteriorated in that time?

It has taken a long time for me to have a real diagnosis that I have Charcot Foot. Originally there was some confusion by a number of Drs here believing it to be CMT. I don’t fit many of the criteria for someone who suffers with this strange disease hence the slow diagnosis. I’m a 61 year old male, who doesn’t drink, smoke and I’m not over weight. Only recently diagnosed with T2 yet having originally suffered with Charcot for over 12 years.

I feel lucky to have had my left foot rescued in time as the onset happened quickly compared to my right foot which was originally fused 12 years ago. Systematic problems with it during that time including a near death experience. Not my time.

Fortunately my ankle joints are still in place and with a small amount of movement.
Do you have any nerves left in your feet?

My nerves have gone in both feet now although I have a dull ache with the recent rod insert. Eight months after surgery it’s still undecided if the rod will remain in place although positive signs are that the bones are fusing. The specialist who I see here is excellent and may try to straighten my claw toes on the left foot as these have presented me with so many abscesses in the last couple of years. We will see how the custom shoes work out first of all. I manage a small slow walk each day now without any walking aides although feel crippled for the rest of the day.

I have monthly checks at the hospital here and swimming will definitely help. I’m planning on swimming in a nearby lake soon once the weather improves soon. The rowing machine is and has been a real blessing as it is low impact. My overall flexibility has improved around my lower back and my legs have strengthened since being sedentary for so long.

I am able to drive an automatic and have just been granted disabled status which is something I never imagined but helpful.

I am managing the problem now but wonder long term how my mobility will take shape,

Thanks again.
 
Welcome to the forum @Laroc

Sorry to hear of your Charcot foot, but glad you have been able to join us, and been able to find others to share your experiences with.

Hope you can maintain your mobility, and your flexibility continues to improve with the rowing and swimming.
 
everydayupsanddowns said:
Welcome to the forum @Laroc

Sorry to hear of your Charcot foot, but glad you have been able to join us, and been able to find others to share your experiences with.

Hope you can maintain your mobility, and your flexibility continues to improve with the rowing and swimming.
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Thank you for the welcome and encouragement.

It’s been a strange journey so far as I’ve only been diagnosed with T2 in the last year but have had Charcot for over 12 years. I’ve made significant changes in diet and discovering things to help me get fit that are enjoyable are massive wins mentally and physically.

Thanks
 
Charcot foot is a rare complication thankfully, it isn't seen that often although with the increased prevalence of diabetes it is becoming less uncommon. There are a couple of other forum members who have Charcot foot or who are being treated to avoid problems happening, the only other people I've met with Charcot were at a specialist Charcot foot clinic unsurprisingly!

My problems were mis diagnosed as a sprain and withing 2/3 days of being told it was nothing to worry about all my metatarsals had fractured across my foot and displaced and all my toes had been dislocated and twisted. My ankle joint collapsed about 1 year after the original disaster and I've had random fracture in both feet/ankle ever since. I've exhausted surgical options to try and anchor my foot to my leg, 3 failed ankle unions and no new bone growth so I'm stuck in a rut with the only way being a below knee amputation which for a host of reasons I can't elect to do for now. It is difficult living with a foot in a cast held at right angles with metal plates and screws, walking on the flat is ok with crutches but any slope or camber is a real challenge with a leg set in one position- I have to walk sideways to get up and down slopes. I do have some feeling in my feet, they are over sensitive/prickly where I have feeling and do hurt a lot but my toes on my deformed foot lack any sensation. The whole thing is a huge ongoing worry constantly checking for skin breakdown or bone collapse. Walking with crutches for 25 years has wrecked my shoulders and hands with most of every diabetes complication in the book, frozen shoulders, trigger fingers, Carpal tunnel etc but at least I am still mobile.

It is really good to hear that rowing has helped with your fitness, it all helps so much with circulation, blood pressure, blood glucose control etc. Swimming is a lovely exercise. I can't wait for my local outdoor lido to open its doors again to be able to swim around and forget Charcot foot for an hour without everything hurting!

I hope your Charcot foot settles down with good bone growth around the metal and props you up for the future enabling you to remain active and as mobile as possible. Getting my clawed and dislocated toes straightened and wired into position was such a relief and touch wood I've avoided any further ulcers and skin breakdown on my toes, Best Wishes.
 
Flower said:
Charcot foot is a rare complication thankfully, it isn't seen that often although with the increased prevalence of diabetes it is becoming less uncommon. There are a couple of other forum members who have Charcot foot or who are being treated to avoid problems happening, the only other people I've met with Charcot were at a specialist Charcot foot clinic unsurprisingly!

My problems were mis diagnosed as a sprain and withing 2/3 days of being told it was nothing to worry about all my metatarsals had fractured across my foot and displaced and all my toes had been dislocated and twisted. My ankle joint collapsed about 1 year after the original disaster and I've had random fracture in both feet/ankle ever since. I've exhausted surgical options to try and anchor my foot to my leg, 3 failed ankle unions and no new bone growth so I'm stuck in a rut with the only way being a below knee amputation which for a host of reasons I can't elect to do for now. It is difficult living with a foot in a cast held at right angles with metal plates and screws, walking on the flat is ok with crutches but any slope or camber is a real challenge with a leg set in one position- I have to walk sideways to get up and down slopes. I do have some feeling in my feet, they are over sensitive/prickly where I have feeling and do hurt a lot but my toes on my deformed foot lack any sensation. The whole thing is a huge ongoing worry constantly checking for skin breakdown or bone collapse. Walking with crutches for 25 years has wrecked my shoulders and hands with most of every diabetes complication in the book, frozen shoulders, trigger fingers, Carpal tunnel etc but at least I am still mobile.

It is really good to hear that rowing has helped with your fitness, it all helps so much with circulation, blood pressure, blood glucose control etc. Swimming is a lovely exercise. I can't wait for my local outdoor lido to open its doors again to be able to swim around and forget Charcot foot for an hour without everything hurting!

I hope your Charcot foot settles down with good bone growth around the metal and props you up for the future enabling you to remain active and as mobile as possible. Getting my clawed and dislocated toes straightened and wired into position was such a relief and touch wood I've avoided any further ulcers and skin breakdown on my toes, Best Wishes.
Click to expand...
Thank you for the reply. It’s very interesting to hear someone else’s experiences with this condition and I’m sorry to hear the suffering you’re enduring and totally understand.

The checking of the feet, ulcers and walking problems are all very familiar. I literally felt that I was a walking antibiotic last year as every toe on my left foot ulcerated independently.
Its a constant managing process. Very positive news re straightening of toes. I will know if this will be a possibility in a couple of months.

Thanks again
 
My Son who is 30 has been recently diagnosed with charcot foot.
He has had diabetes since age 3. It is very worrying and reading your emails have given me some insight into the problems he will be facing.
Good luck to you.
 
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