Charcot Foot

[kim richardson]

Whilst I can appreciate that this site covers most conditions that Diabetes Type 1 and 2 sufferers may come up against, I feel that not enough information is given out when we are first diagnosed with diabetes on the above condition. We are taught that we have to aim to keep our sugar levels between 4-7, look after our eyes and feet but not once did my diabetc clinic ever tell me about Charcot.
I have been a Type 1 diabetic for the last 36 years. 7 years ago I was diagnosed with this crippling and dreadful condition in my right foot. For several months it was not diagnosed immediately, as the clinic, although they had their suspicions, were not sure what was happening to my right foot. Several x rays later, which unfortunately showed nothing, although my foot was rapidly becoming deformed and out of shape, they decided to send me for an MRI scan. This quickly showed what problem was rearing its ugly head.
Not knowing anything about this condition at all, I was devastated. Consultants were giving me information that in my mind had me thinkng the worst and that I was going to lose my right foot. Horror stories on the internet with horrific photos gave me little or no relief and reassurance, only complete and utter trauma and worry. Those early days were dreadful. I knew of no one else to talk to who had the same condition and I felt so utterley alone.
Luckily for me after spending nearly a year wheelchair bound and in a supportive crowboot waiting for the Charcot to stabilise, I am now and have been for the last 5 years walking as much as the Chacot will allow and it is stable for the time being.
This episode in my life has sparked me to do something, so after searching the internet for a Charcot Foot Support Group for the UK one of which I could not find anywhere, I decided to start one up myself a few weeks ago purely so that people from the UK have somewhere they can go to and talk with and share their experiences with like minded people who also suffer with this dreadful condiion.
If you would like to join my support group you will find it on Facebook under Charcot Foot Support Group, United Kingdom. Please give your support and I very much look forward to hearing from you.
Lets make more people aware of this dreadful condition.

 

[charon]

After reading that I'm still none the wiser as to what it is and what causes it - other than it causes some kind of foot deformation.


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[Robinredbreast]

I will try and have a look. I have seen some images of this condition on Google and it can be awful. I have an ankle /foot problem but Charcot Foot has not been diagnosed.

Take care with best wishes

RRB

 

[Support]

I will join I've had Charcot in both feet - not at the same time. So I know only too well how debilitating this condition can be


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[kim richardson]

Hi Charon, Robinredbreast, and support,

I would just like to thank you for commenting on my recent post re the above.
Charon if you join my support group on facebook you will be able to read all about Charcot. From time to time I will post information on this site which may be of interest to you.
Robin thank you so much for your kind words and Support thank you also.It is another step forward in the right direction if we can get this condition made more aware of out there.
I look forward to having you all on board.

Kim

 

[Thundercat]

About 15 years ago I worked with a woman whose husband was diagnosed with charcot's foot and they were given no info on it other than to stay off his feet. I asked my doctor about it and was told it was not something I needed to worry about. Even when I persisted I got nothing. I know it was a long time ago and perhaps more is known now but I don't understand the silence on it when usually doctors like to throw around complications to keep us 'motivated'. Fair play for taking it upon yourself to raise awareness.

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[kim richardson]

Hi Thundercat,
First of all thank you so much for taking an interest in my Support Group and for echoing my thoughts on the awareness of Charcot.
This is something that I feel very passionate about which is why I decided to start up this support group as I could not find one anywhere in the UK.
I agree Thundercat there is even today, not enough known about this condition and it seems to be a condition that no one wishes to talk about. People seem to shy away from it because the symptoms are replusive to look at or talk about. My right foot is severly deformed with a rocker bottom which makes walking etc very difficult for me and wearing normal shoes are a thing of the past.
Here in England, unlike America, surgery is very much frowned upon, because there are not enough trained people to undertake reconstructive surgery. I think also funding is a big issue. America, Canada etc seem to have moved forward in the surgery techniiques and although I know that there they have to pay big money to have operations done like this, it seems like there is a bigger awareness over there of this condition and there are less amputations, purely because they are prepared to go down the line of surgery if they have to. It means a lot to me that you have taken the time to read my posting and it would be great if you could at least like my Support Group and even post a comment on there if you wish to. I only started this up three weeks ago and although slow, more people seem now to be taking an interest in it. I just wish that I could get a lot more people on board from the UK, but as I say, from small acorns.

 

[SAH154]

My left foot suffered a big episode of one in 2008 took a year to settle, My biggest problem was misdiagnosis as gout by A&E the Doctor said if the foot is warm and it's not an infection it has to be gout, all this to the two trainee doctors who will now repeat his mistake.

I do try to educate any medical staff I meet who have no clue what a 'sharko' foot is.

 

[Seriously_Sax1989]

Hey thanks for posting this! I've had type 1 for 18 years and this is the first time I've EVER heard of this!

My feet are mishapen as it is (from birth) but don't want anything else to happen to them! Will join your Facebook page take care xx


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[hanadr]

My T1 husband [ about 40years] has 2 Charcot feet. His shoes are provided bt the NHs and we rely on our excellent local podiatry service to help keep the feet functioning. last year he spent a couple of months in plaster, being changed weekly, to get rid of an ulcer. The treatment worked! Luckily it hasn't recurred. A support group would be helpful, particularly with things like finding shoes and socks.
Hana

 

[lucylocket61]

I dont do Facebook. Can we have some info and links on here please?

 

[emmaw_13]

I would join I was diagnosed with Charcot in both feet in may this year I'm 26 and have had type 1 diabetes for 13 years unstable for 8. Was diagnosed with neuropathy in my feet 6 years ago. I was told neuropathy weakens the muscles but not the bones. I've had to give up work now in a wheel chair non weight bearing. Like yourself I had never heard of Charcot was always told about ulcers but not Charcot. Mine was caught early luckily but after 2 weeks of walking on 2 Charcot feet at the same time. I live in derby which is apparently the best foot specialists in the uk. But I'm scared for the future I don't think ill ever trust my feet again I also couldn't find any information on it either and a lot of diabetics I have spoke to have never heard of it either now I'm struggling to get financial help

 

[baldrick040561]

Hi all fellow suffers

At last some information. Like many knew nothing about this condition. I have been diabetic for 30 years and recently started with loads of complications- - retinopathy, catarachs, foot ulcers, Atrial Fibrillation, Erectile dysfunction and now it looks like Charko.

Earlier this year I had ulcers on both outer ankles that took over 3 months to heal despite high dosage antibiotics. Hospital made me special shoes but sometimes go over on ankle. Last week noticed right ankle slightly swollen and bruised with some heat so popped in at foot clinic to see podiatrist who did not seem too concerned but arrayed for me to see consultant a couple of days later. He took one look and asked a few questions then mentioned Charko. Blood test taken and x-ray done and awaiting MRI emergency appointment (not sure how long that will be) and wearing an air cast boot. Have appointment to see consultant again next week. Really worried as just been back at work on restricted duties after over six months off and now can't drive. At present they letting me work from home but for how long not sure. There has already been mentioned taking ill health retirement - I'm 52!!!!

Tried to find the FB site but no joy - does it still exist??

Richard

 

[Garr]

Hi, I don't do facebook either and would very much appreciate info on signs and symptoms. Not long after diagnosis my right ankle flared up for no apparent reason and couldn't put any weight on it at all, Doc thought it was gout but the tests came back clear. It disappeared as quickly as it came and thankfully hasn't returned. Never heard of Charcot Foot before.

 

[emmaw_13]

Hi yes the Facebook page is called charcot foot research & support group you can find me on there. I have charcot in both feet and I'm 27 both healed and then refract urged again been this way since may 2013 and still in wheelchair non weight bearing given up work and driving for god knows how long? Luckily never had ulcers the sooner it's caught the better the out come apparently I've heard there's no cure just management and it gets miss diagnosed a hell of a lot and normally it's to late for help

 

[AnnieC]

Whilst I can appreciate that this site covers most conditions that Diabetes Type 1 and 2 sufferers may come up against, I feel that not enough information is given out when we are first diagnosed with diabetes on the above condition. We are taught that we have to aim to keep our sugar levels between 4-7, look after our eyes and feet but not once did my diabetc clinic ever tell me about Charcot.
I have been a Type 1 diabetic for the last 36 years. 7 years ago I was diagnosed with this crippling and dreadful condition in my right foot. For several months it was not diagnosed immediately, as the clinic, although they had their suspicions, were not sure what was happening to my right foot. Several x rays later, which unfortunately showed nothing, although my foot was rapidly becoming deformed and out of shape, they decided to send me for an MRI scan. This quickly showed what problem was rearing its ugly head.
Not knowing anything about this condition at all, I was devastated. Consultants were giving me information that in my mind had me thinkng the worst and that I was going to lose my right foot. Horror stories on the internet with horrific photos gave me little or no relief and reassurance, only complete and utter trauma and worry. Those early days were dreadful. I knew of no one else to talk to who had the same condition and I felt so utterley alone.
Luckily for me after spending nearly a year wheelchair bound and in a supportive crowboot waiting for the Charcot to stabilise, I am now and have been for the last 5 years walking as much as the Chacot will allow and it is stable for the time being.
This episode in my life has sparked me to do something, so after searching the internet for a Charcot Foot Support Group for the UK one of which I could not find anywhere, I decided to start one up myself a few weeks ago purely so that people from the UK have somewhere they can go to and talk with and share their experiences with like minded people who also suffer with this dreadful condiion.
If you would like to join my support group you will find it on Facebook under Charcot Foot Support Group, United Kingdom. Please give your support and I very much look forward to hearing from you.
Lets make more people aware of this dreadful condition.

Is this something that is caused by diabetes and how rare is it . Seems like even the long term diabetics on this forum had not heard of it

 

[emmaw_13]

Diabetes type 1 and type 2 can cause neuropathy a complication of diabetes due to lack of sugar control being the most leading cause. Neuropathy can be reversed with control but no always. I've only had diabetes myself for 14 years and 8 of those years were un stable blood sugars between 20-30 mmol I know! However this lead to me getting neuropathy in my feet (nerve damage) loss of sensation to the feet, neuropathy weakens the bones in your feet. Which then can cause the bones in your feet to fracture with little trauma. We are all told to look after our feet ulcers ect. But the majority of diabetics have never heard of Charcot not to be confused with Charcot Marie tooth. I've had neuropathy in my feet for about 5 years now but in May 2013 during an exercise I jumped which lead to a sharp pain. I went to a&e twice as my left foot was black they said it was badly bruised even though I had told them I was a diabetic with neuropathy. It was only confirmed a week later by my endo nurse cause she was at the same gym as me. She said it looked like Charcot and booked me in clinic the next day. Of course I went home and googled it I found out about two pages of information that was it. The following day I was put into an air cast signed off work couldn't drive and wait for an MRI appointment. A week later my right ankle had swelled I thought it was from weight bearing on crutches they then put me into a second air cast non weight bearing. A week later I had my MRI and was confirmed with charcot. My world fell apart I am now still in a wheelchair 8 months later with no sign of it ending my left foot had healed in November 2013 and was allowed to start weight bearing. My right had healed in August 2013 for that foot to refracture in November I have now been told that my left foot has refractured and I'm back to the start of non weight bearing. I have been very lucky to have caught mine in time there is no cure just management it is very rare at my age of 26 I'm the third youngest my doctor has diagnosed in her 40 year career it's rare to have it in both feet like myself but can sometimes start in one foot and lead to the other. So it can be rare but not un heard of this condition is life changing but mis diagnosing is made a lot sometimes even to late where patients have lost limbs and ended up with deformed feet never to walk again. So if your worried about your feet be persistent so much so that you will save your life. The 3 most common symptoms are swelling for no reason, hot to touch, and sometimes reddened skin. But there's not a lot of information out there Kim and myself and many others are hoping to raise awareness on this crippling condition. But most importantly get your sugars under control that way you will have a life free from complications. Spread the word!


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[baldrick040561]

Still carrying on. Came out of aircast boot for one week into a cast but guess what? Yes it rubbed and firmed an ulcer so back in boot until it heals then going to try a different cast. Have been told to keep all weight off even in boot or cast so on crutches. My balance not the best plus have problems with my knees and back. Also been told could be like this for 12-24 months and then??
I am looking into PIP and blue badge but who knows. Starting to wonder what next. At moment employer allowing me to work from home on restricted hours but for how long who knows. They have hinted at ill health retirement cause also have cardio problem. So anyone who tells you diabetes isn't a serious condition!!!!

 

[emmaw_13]

It's a very serious condition!! Dot get me wrong I know some diabetics that don't have any problems I think I'm just unlucky. Yes was non weight bearing from the start however it took me 3 months to actually get hold of a wheelchair. I'm now weight bearing on right as that has healed. But pretty sure it's gonna come back to be honest both mine had healed and then 2 weeks later there re fractured again can't seem to see an end it's been 8 months for me but pretty sure it will take upto a year if not longer if it refractures again. Would definitely recommend getting a blue badge you can fill it in on line. I would also apply for PIP but sooner rather then later I've been waiting 8 months for a reply and all they can tell me is it's being looked at. Well as long as you can work from home I can't see how they can get rid of you surely that would be unfair dismissal or discrimination.


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[claire 1965]

Hi, started with a foot ulcer which responded well to antibiotics and then had pain and swelling in the ankle. The temperature was up also. Now a week later I am in an airwalker and feel I have no information on this condition, the doctors have mentioned it but not confirmed. They are leaving me for three weeks in the airwalker but feel I need to have a diagnosis and more information. Found your information and although it frightens me at least I can see what other people are going through, I am hoping not to have this diagnosis and feel frustrated with things as they are. Insulin dependent for 30 years with a few bad years in the middle when I had two young children and did not put the diabetes at the top of my priority list.