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Loulee

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Hi everyone and thank you for accepting me into the forum
Although I do not have diabetes I have been directed to Diabetes uk for information. I have Bilateral neuropathy of unknown cause which has now caused Bilateral Charcot foot. I’m in air boots for 3 months but know very little about the condition. Any information would be warmly welcomed.
Many thanks
 
Hi and welcome.
Really sorry to hear that you have neuropathy and now "double" Charcot. It is a very rare complication of diabetes so we don't have many members with it but I will tag @Flower who has been battling it for many years.
It is good that they have identified it and you have air boots to support your feet.
Are you in much pain? Which if any pain meds have they given you for the neuropathy and are they helping?
 
Welcome @Loulee 🙂 Sorry to hear about your foot problems. Although Charcot’s is quite rare, there have been a few threads about it, including this recent one:

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Thread 'Newbie here'

Hi, I'm 19 and newly diagnosed with Type 1 Diabetes, I have recently been hospitalised with cellulitis and probable Charcots foot, I'm due to finish the course of my antibiotics but am scared they haven't worked due to the severity of pain in my ankle.
My appointment,ent with the trauma and orthopaedics teams and diabetes team isn't for another two weeks, and was wondering if I could get any help with how to help my foot heal with Charcot's foot. I have crutches and a boot, and I'm putting weight on as tolerable and elevating my feet and having lot's of rest but am wondering if there is...
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Inka said:
Welcome @Loulee 🙂 Sorry to hear about your foot problems. Although Charcot’s is quite rare, there have been a few threads about it, including this recent one:

O

Thread 'Newbie here'

Hi, I'm 19 and newly diagnosed with Type 1 Diabetes, I have recently been hospitalised with cellulitis and probable Charcots foot, I'm due to finish the course of my antibiotics but am scared they haven't worked due to the severity of pain in my ankle.
My appointment,ent with the trauma and orthopaedics teams and diabetes team isn't for another two weeks, and was wondering if I could get any help with how to help my foot heal with Charcot's foot. I have crutches and a boot, and I'm putting weight on as tolerable and elevating my feet and having lot's of rest but am wondering if there is...
  • Care

.
Click to expand...
Thank you Inka
 
Hello and welcome @Loulee

I’m really sorry that you’re dealing with bilateral Charcot foot. It is a quite rare condition , more often a neuropathic complication of diabetes but there are other conditions that can cause severe neuropathy & Charcot. It really does stop you in your tracks & make normal life a challenge. Are you in a wheelchair with both feet in air boots or using a frame?

The main aim as soon as Charcot is suspected and/or diagnosed is to protect the structure & shape of the foot/feet and try to keep them intact. I hope your feet are still intact despite the fractures. It can unfortunately take months to settle down during the initial onset phase where the foot becomes very hot, red, swollen & the bones start to soften & fracture. It is possible to have a good outcome, Charcot can settle and you can return to wearing shoes & custom insoles.

This information is from the Diabetes UK site

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 www.diabetes.org.uk

I only know Charcot from my diabetes perspective so I dont know if there are other things to consider and other treatments that may help you. Do you know what has caused the neuropathy? Sjorgrens syndrome is an autoimmune condition and can cause peripheral neuropathy. Could it be linked to methotrexate?

Bone density is important for fracture healing & there’s various drugs that can help to promote healing, also drugs for treating painful neuropathy may help eg duloxetine, gabapentin, pregabalin, amitriptyline although I haven’t found an efficient combination to successfully treat neuropathy despite trying various combinations.

It is a long term condition and I hope it was diagnosed soon enough to give you the best chance of healing without any changes to your foot structure. There’s a few Charcot foot groups on Facebook if that’s something you use- eg Charcot foot uk support group. They can be good to read what treatments etc are around and ask for advice.

It is a tough thing to cope with physically & mentally but I hope you’re getting good care and things settle down for you. Best wishes
 
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Hi Flower, thanks so much for the information, I’ve been having issues with my feet for past 9 years, only after much nagging was referred to rheumatologist, she has diagnosed Sjögren’s, given methotrexate and Naproxen for pain, I’m waiting to see a neurologist as neuropathy is classed as being of unknown origin even though as you Sjögren’s can cause this. Feet have been constantly painful even at rest in bed , first fracture was found in February via X-ray followed up with MRI where multiple fractures were found in May, I’ve just had a Dexa scan so awaiting results from that.
I’ve been given little information or advice just boots and crutches, review in 3 months, have got an appointment in September for Orthotics ( total contact insoles) I’ve got myself a mobility scooter and after reading lots of information have got a wheelchair arriving Saturday.
I’ve noticed my toes are lengthened on both feet but otherwise shape of feet is currently ok.
Currently unable to drive or work.
Its been quite stressful as you have probably found yourself.

Thanks again for information it’s much appreciated.
 
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