Charcot Foot Support

Diabetic Charcot Foot

Living with Charcot Foot: Jennifer’s Experience

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Everyone with Charcot Foot has a different experience but we can all learn something from one another. Today, Jennifer is sharing her experience of living with Charcot Foot. She was diagnosed with Charcot Foot on her 43rd birthday.

Charcot Foot Diagnosis

Jennifer had been experiencing neuropathy pain and numbness in her feet and legs for several years. She had also begun to have swelling in her feet. She and her doctor originally thought the swelling was a side effect of medication she was taking. She discontinued the medication but the swelling persisted. Just a week before her first fracture she hiked in the Catskills.

“I went hiking with this in the Catskills and didn’t know,” Jennifer said. “I knew I had an appointment with my endocrinologist in a week and thought I would bring it up to him.”

After returning from her trip she planned to see her doctor to discuss the continued swelling. Before she made it to the doctor for her appointment she fell on her stairs while taking her dogs out for a walk. X-rays showed she had a fractured left heel. At her three week follow up appointment the bone hadn’t begun to heel and she first heard the mention of Charcot Foot.

“I had the compression heal fracture and go back for the three week follow up and there is no healing and I thought that isn’t good,” Jennifer said. “And my podiatrist said I hope this isn’t Charcot.”

Not long after the first break she began to have problems with her right foot. Going non-weightbearing on her left foot put additional pressure on her right foot. It too began to fracture.

“For five weeks I went to work on crutches, drove my car, did everything,” Jennifer said. “Then on my birthday I went to work and to my doctor’s appointment and my right foot was very swollen and there was a bump in my arch. It was so swollen you couldn’t even tell it was the bone. I go for an x-ray and later that night he called me and told me to take the air cast off my left leg, put it on my right and get to an orthopedist. I didn’t even need him to say it, I knew from the way his voice sounded it was Charcot Foot.”

With both feet in the acute stage Jennifer had to go completely non-weightbearing for several months. She was eventually fitted for AFO braces on both legs which she wore for more than six months. She has now been able to transition back into tennis shoes with inserts.

Advocating for your medical care

Jennifer is a pro at advocating for her medical care, a skill she honed before her Charcot Foot diagnosis but one which has proven to be especially beneficial in dealing with Charcot. When originally diagnosed with Charcot Foot, Jennifer began meeting with a number of doctors, interviewing three before finding one she was comfortable with.

For her it was important to find a physician who was trained and competent in treating Charcot Foot. She wanted a doctor with a good bedside manner and one who wasn’t eager to do surgery. Once she found the right foot doctor she was able to develop a Charcot Foot treatment plan which worked for her.

Jennifer struggle with other health issues in conjunction with Charcot Foot. One way she continues to advocate for her medical care is by maintaining detailed records. Because she sees a number of physicians for different medical conditions she keeps copies of the records to quickly and easily share when she is at her various appointments. In regards to her Charcot Foot she always gets copies of her X-rays on a disc.

Some of her others tips for being a good advocate for yourself include:

  • Be the expert and learn everything you can about Charcot Foot or the condition you are being treated for.
  • Don’t rely on doctor’s to have all of the information. Remember you should know your body and condition best.
  • Don’t be afraid to ask for a second, or third or fourth opinion.
  • Ask questions, any and all questions.

Charcot Foot Treatment Options

One of the first doctors Jennifer met with recommended surgery during her first appointment. His quick desire to perform surgery left Jennifer concerned. She wanted to explore different Charcot Foot treatment options.

“He came in and I started asking him how much experience he had with Charcot and he didn’t really answer me,” Jennifer said. “He was very full of himself. I then asked him what are my options. He is now scheduling me for mid-foot fusion the next week. I was like, wait, you want to fuse my foot. First of all, I had all this swelling, fresh fractures, and my hemoglobin A1C was 10.6. He was going to cut into my diabetic foot with a 10.6.”

For her and many others with Charcot Foot surgery is not the right answer. There are many risks associated with surgery including additional injury, infection and amputation. At the end of the day surgery will not cure Charcot Foot so it was important to her to explore all the other options.

“These surgeries, fusions, external fixators, are only temporary fixes,” Jennifer says. “When you go into a surgery for the first time you need to know it is a very likely possibility it won’t work and all you are doing is now you are sitting longer and having to heal longer to only have more surgery. I feel like people think surgery is the answer to this and it’s not. I feel like people really need to understand surgery isn’t going to fix this. You aren’t going back to how you were before this happens. You still have Charcot.”

Jennifer did find a physician who was supportive of her and had a good understanding of Charcot Foot. Her physician recommended the following Charcot Foot treatment options.

  • Go non-weightbearing during the acute stage of her Charcot Foot
  • Wear AFO braces as prescribed
  • Wear custom inserts and appropriate shoes

Jennifer has been diligent with following her doctors orders. She says when she should be non-weightbearing, though it is difficult, she is completely compliant.

“When I’m non- weightbearing it’s non-negotiable,” Jennifer says. “If the doctor says to be non-weightbearing, I’m non-weightbearing.”

Moving forward

Currently, Jennifer’s feet are stable. She wore AFO braces for over six months and has now transitioned to tennis shoes with custom inserts. She isn’t naive and knows that it is likely she will have additional problems in the future. However, she tries to have fun and keep a sense of humor about the situation.

She has been able to go on vacation recently. Making visits to the pool and the beach have become a reality again. On St. Patrick’s Day she ventured out with friends for a pub crawl. She was nervous, as it was her first outing with braces, but says her friends checked in on her throughout the night to make sure she was doing okay.

“I am really lucky to have such a great support system,” Jennifer says.

Jennifer has mourned the loss of her beloved shoes. She now focuses her attention on enjoying fun socks and slippers. She recommends Happy Feet toe separator socks. They come in several colors and are fun but she says they also help tremendously with toe cramping.


With her feet currently stable Jennifer is enjoying the moment and taking the time to focus on some other health concerns. We appreciate her willingness to share her experiences with us. Jessie, Charlie and ""” rel=”noopener noreferrer”>Beth also have Charcot Foot experiences to share. If you would like to discuss your experiences with Charcot Foot contact us.

Why is this happening to me? Beth shares her experience with Charcot Foot

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Beth is a 46-year-old Type I Diabetic who was diagnosed with Charcot Foot in 2010. She is sharing her experiences living with Charcot Foot in hopes of helping others.

When Beth first heard the words, diabetic Charcot Foot, from her physician she was confused. She had actually heard about Charcot Foot years previously but never thought it would happen to her.

“Diabetic Charcot Foot, he actually said diabetic Charcot Foot and I couldn’t believe it,” Beth said. “I had a good A1C, I took care of myself, how was this happening and why was it happening to me.”

Beth was diagnosed with Type 1 Diabetes when she was only 18 months old. She reports in her early childhood her blood sugars were never controlled. Her home life was chaotic and her parents were unable to successfully manage her health needs. She was frequently hospitalized due to high blood sugar. It wasn’t until she was a teenager, when she was in control of her own health, that her blood sugar returned to a stable range.

She says she maintained her A1C consistently between 6.5 and 7.8 from the time she was 16 until she was in her early 30’s. At the age of 32, Beth experienced a significant trauma, her young son died in a tragic farm accident. The grief sent her into a spiral of depression.

“After Ben died I couldn’t function,” Beth says. “I was in such a deep depression and I couldn’t manage to get out of bed and shower most days, let alone take care of my diabetes. I spent close to two years with very high blood sugars while I tried to pull myself together.”

Eventually the grief and depression lifted, though still present, it wasn’t as intense and Beth was able to begin caring for herself again. Her blood sugars returned to normal and her A1C returned to 6.8. She was happy with the progress she had made and was even able to return to work for the first time since her son died. She was thrilled to return working as a nurse at her local hospital.

Not long after returning to work Beth experienced significant swelling in her feet. She said she thought it was due to working 12 hour shifts after a few years of laying in bed. But the swelling became intense and she noticed it was becoming harder to walk. Then one day she fell.

“I was walking back from the mailbox and went to step up on the curb and I just fell,” Beth says. “It was like my foot just gave out. It hurt but not bad. I got up and went back to the house and went about the rest of my day. That night I took of my shoe and was blown away.”

What Beth saw was a large bulge on the side of her foot. She knew instantly the bulge was from a broken bone. How had she broken her foot and not realized it? She was stumped. But she also knew from the color of her toes she needed medical care soon. Her toes were swollen and a blueish purple color.

At the hospital Beth underwent x-rays and her foot was in fact broken in several locations. She was referred to an orthopedic surgeon and met with him the next day. It was then she first heard the dreaded words, Diabetic Charcot Foot.

“I was angry when he told me,” Beth says. “I know there were periods of time that my blood sugars were high but overall I thought I was doing well. To find out I had this pissed me off. I knew what it meant for me and I wanted none of it.”

She wanted none of it but Charcot Foot was here to stay. Beth has now undergone two surgeries on her right foot and one surgery on her left foot. She has significant Charcot Foot deformity including the infamous “rocker bottom”.

“The Charcot Foot deformity has been rough,” Beth says. “My feet are so deformed it is almost impossible to walk. I haven’t been able to work as a nurse for the last five years. It still makes me sad and angry and I still wonder why this is happening to me.”

Beth does wear orthotics to help her walk which she says does help with the balance issues caused by the Charcot Foot deformity. She also regularly uses a knee scooter. She maintains her blood sugar at a healthy range and has experienced no other diabetic complications.

We thank Beth for being willing to share her experience on living with Charcot Foot. If you would like to share your experience please contact us. You can read about Jessie and Charlie’s experiences as well.

Charcot Foot Diagnosis Disaster: Jessie’s Story

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Charcot Foot is considered to be a rare condition but its true prevalence is likely underestimated due to mistaken or delayed diagnosis. It is incredibly rare to meet someone with Charcot Foot who was diagnosed accurately when their symptoms began. It is more likely to hear about the diagnosis disasters. 

Jessie, a 38-year-old, Type II Diabetic from Kansas was diagnosed with Charcot Foot after a lengthy period of misdiagnosis. She has agreed to share her experiences in an effort to help others.

Jessie began showing symptoms of Charcot Foot about one year before being officially diagnosed. She says it all started with a swollen right foot which was warm to the touch. She initially thought she had sprained her ankle, though she didn’t remember doing anything which would have caused injury. After taking it easy for a few days, when the swelling didn’t subside and the heat didn’t lessen she paid a visit to her doctor. The doctor agreed it was likely just a sprain and advised her to take it easy. 

Over the next several months her right foot would swell on occasion and the skin would be red, but it would subside with time. She attributed it to wearing bad shoes.

” I had quite the love affair with adorable little ballet flats,” Jessie said. “Adorable but absolutely no support for the feet. I would switch out my shoes and the swelling would decrease.”

Six months prior to diagnosis both her left and right foot would swell significantly. If she would take her shoes off at the office during the day she wouldn’t be able to get them back on because they would swell so much. By the end of the day she could hardly walk and her feet would throb. She again spoke with her doctor about the pain and swelling and she attributed the swelling to a blood pressure issue. She changed her blood pressure medication in hopes of reducing the swelling. 

Four months prior to diagnosis all of Jessie’s symptoms subsided. Her feet quit swelling, they didn’t throb and she could walk easily. She attributed the reduction in symptoms to getting her blood pressure under control, despite the fact that her blood pressure medication was changed at least 60 days before the swelling subsided.

“I was just glad the swelling had gone away and put it all out of my mind,” Jessie said. ” I had recently adopted my infant daughter and was so busy with being a new mom, I didn’t give it much thought. No swelling meant no problems in my mind.”  

Then as quickly as the symptoms faded they returned. But this time the swelling was extreme. Jessie had recently undergone eye surgery and was required to remain face down for 30 minutes out of every hour. During that period, her feet and legs began to swell. Her doctor attributed the swelling to the lack of movement since surgery and put her on a water pill. The water pill worked, her swelling went down temporarily but she had a bad reaction to the medication and passed out. When she regained consciousness the paramedics were asking her what was wrong and all she could tell them was her foot hurt. 

After passing out, she was taken to the hospital where the doctor on call treated her for low blood pressure and dehydration. While laying in the hospital bed her left foot began to swell quickly, redden and was warm to the touch. She asked him if she could have broken it when she fell while passing out. He brushed it off and attributed the swelling to water retention yet again. Home she went, sore foot and all. 

Over the course of the weekend her foot swelled to a size she couldn’t believe was possible. Jessie describes it as a monster foot, morphing from what once looked like a human foot to what looked like a monster foot. As it swelled it became more deformed and continued to get warmer. Two more trips to the emergency room occurred before she was admitted to the hospital with a diagnosis of cellulitis. It was another two days before a doctor finally agreed to x-ray her foot. Sure enough, it was broken. 

She was told she had a Lisfranc fracture, which is when the toes are dislocated from the mid foot. Her toes veered to the left while a large lump of bone could be seen on the right side of her foot. Due to the time which had elapsed since the injury occurred, quite a bit of damage had been done since she had been walking on it She was transferred to a surgeon out of town for surgery. When she was transferred I was told by the orthopedic surgeon at her home hospital, “Worst case scenario, you lose your foot, best case scenario, you walk with a limp and have lifelong pain.” 

“After surgery I was told I had Charcot Foot,” Jessie said. “I had no idea what Charcot Foot was or what the future held. At the time I thought surgery fixed it, not realizing Charcot Foot is a lifelong condition. Due to the late diagnosis my foot was badly damaged. Surgery realigned my toes and pins now held my mid foot together. But I now had the infamous “rocker bottom” associated with Charcot.”

Four months after surgery on her left foot, she began to have severe swelling in the right foot. A trip back to the surgeon confirmed what she already knew. She also had Charcot Foot in her left foot. 

At the time she felt like her story was unique. She wondered how this could have been missed by so many doctors for such a period of time. She now realizes her story is not unique.

” Almost every person I have spoken to with Charcot Foot went through an extensive period of misdiagnosis,” Jessie said. “The most common misdiagnosis is cellulitis.”

Misdiagnosis and delayed diagnosis can be costly for those with Charcot Foot. Delayed diagnosis increases the risk of complications and amputation. Jessie firmly believes the only way to improve this situation is through awareness and education among medical professionals and those with neuropathy.

“I’ve been diabetic for years and had never heard of Charcot Foot,” Jessie said. “I wish more medical professionals would talk about Charcot Foot and educate those with neuropathy about the signs and symptoms.”

Jessie now wears total contact AFO braces on both feet. She sees her surgeon regularly and is happy to report her feet are currently stable. She encourages others to see their physicians regularly and discuss any concerns they have with medical professionals.

Since interviewing Jessie for this article she has released an Ebook, I Miss My Shoes: Living with Charcot Foot. We visited with her again to learn more about what motivated her to write the book. Visit our review of the book and see our question and answer session with Jessie.

Jennifer has also shared her experience living with Charcot Foot.