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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.

Recognizing Charcot Foot symptoms

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All too often, Charcot Foot is misdiagnosed or a diagnosis is delayed. Delayed diagnosis and misdiagnosis can lead to an increased risk of deformity and amputation. So what are the signs and symptoms of Charcot Foot?

Charcot Foot symptoms include swelling of the foot and ankle. Some people with Charcot Foot report significant swelling, regardless of if they stay off of their feet or not. Another symptom of Charcot Foot is redness of the foot. The foot will also be warm to the touch. A Charcot Foot is often much warmer than other parts of the body.

Any of these symptoms in a person with diabetes and/or neuropathy should lead a person to consider Charcot Foot as the culprit. Though the combination of symptoms are typical of Charcot Foot it still continues to be misdiagnosed or not diagnosed on a regular basis. Frequently, people are diagnosed with cellulitis when in fact they are suffering from Charcot Foot.

Charcot Foot Deformity

Foot deformity is another sign of Charcot Foot. As Charcot Foot progresses and the foot fractures more it leads to a deformed foot. The Charcot Foot can take on a “rocker-bottom” appearance when the arch of the foot collapses. As the foot heals and the bones consolidate the foot can also take on a deformed shape as a result.

The Charcot Foot deformity will lead to problems with balance. It’s incredibly difficult to balance and walk with a “rocker bottom”. The foot deformity will also make it difficult to find shoes which fit.

Escalating foot problems

Foot problems are likely to escalate for those with Charcot Foot. Those with Charcot Foot are at an increased risk for developing ulcers and sores on their feet. These wounds can lead to infection which can in turn lead to amputation. Any sign of ulcers, sores or wounds should be taken very seriously and treated quickly.

It is not uncommon for individuals with Charcot Foot to have toenails fall off or become brittle and break easily. Charcot Foot sufferers also report having very dry skin and varying levels foot pain.

If you experience any of the symptoms of Charcot Foot or signs of an escalation of your Charcot Foot it is important to visit a doctor immediately.

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.

Managing Charcot Foot Pain

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Charcot Foot impacts people in varying ways. Some people with Charcot Foot report having a great deal of pain. Others report very little to no pain in their feet, despite numerous fractures. However, the majority of people diagnosed with Charcot Foot report some type of pain related to neuropathy.

Neuropathic pain is caused by damage or disease affecting the somatosensory nervous system. This pain can vary throughout the day, at times feeling severe and at other times disappearing all together. The pain can feel different, with some people reporting a pins and needles type feeling while others report burning and tingling.

Foot pain relief

There are some things you can try to help alleviate foot pain. You should first speak with your doctor about the pain you are experiencing. Some physicians will prescribe medications for neuropathic pain. There are also many over-the-counter or home remedies which can be helpful to treat foot pain. We have tried many different options and have found relief, enough so we feel comfortable sharing with you.

Insta-Relief DM Pain Relieving Cream is one product we have found that works well to ease the pain associated with neuropathy. The cream cools the skin when first applied and relieves the feeling of pins and needles. Applying the cream prior to going to bed can help improve rest as the feeling of the sheets on your feet is dulled a bit.

MagniLife Pain Relieving Cream is one of our favorites. It is a bit more expensive but we have found it to be quite helpful. Not only does it help relieve neuropathy pain and ease foot pain but it is very soothing for the skin. The scent is mild but pleasant and it leaves the skin feeling soft and smooth.

Aspercreme Lidocaine Foot Pain Creme is a fast acting pain reliever. We particularly like to carry a small bottle of this with us when we plan to be out for the day. If we are walking a lot it can be applied easily and acts quickly to alleviate pain and swelling. It contains four percent lidocaine. The price is affordable and a bottle will last at least a couple of weeks.

Foot Neuropathy Elixir is a pretty impressive product. Rather than being a cream it is in a liquid form and comes in a roll on bottle. You simply roll it gently over the bottom of your foot. It works in about 30 seconds, and dulls the pain considerably. We have found this to be particularly helpful with the sharp stabbing pain which occurs at times. Though it feels like a light oil on application it doesn’t make your foot feel oily once it dries. It also smells good which is an added bonus.

Dr. Teal’s Epsom Salt Bath Soaking Solution is hands down our favorite. When we don’t have any open wounds or cuts we love to soak our feet in either the eucalyptus or lavender solution. We just add a cup of the salts to warm water and soak our feet for 10 to 15 minutes. While the epsom salts aren’t specifically intended for pain relief we find it relaxing and that it actually does help to ease pain. After soaking, make sure to rinse your feet and then dry them completely.

Meditation has also proven to be helpful for us. It sounds crazy but it really does help relax us which in turn eases the pain. By learning to control our breathing and relax our body we have been able to manage pain with less medication. If you have never meditated before there are a number of good guided meditations available on YouTube. This happens to be one of our favorites.

Foot pain will likely always be a struggle with Charcot Foot. However, some relief can be found if you are willing to try different products and pain management techniques. Always talk openly with your doctor about the pain you are experiencing. If you have found a product or practice that has helped relieve your foot pain, please share in the comments.

Charcot Foot Book Review

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Finding a book about Charcot Foot, written by someone living with Charcot Foot seemed impossible. That is until this week! This week, Jessie Wagoner, who we have featured previously, released an eBook, I Miss My Shoes: Living with Charcot Foot.

I Miss My Shoes: Living with Charcot Foot provides a personal view of Charcot Foot. Gone are the textbook descriptions and clinical approach usually found in writings about Charcot Foot. Rather, Jessie provides an easy to read, honest depiction of what living with Charcot Foot is like. She explores Charcot Foot misdiagnosis, adjusting to orthotics, managing the emotional toll Charcot Foot can take and highlights groups that have helped her find others to connect with.

One highlight of I Miss My Shoes: Living with Charcot Foot is the frequently asked question section. In this section, Jessie dives into the most common questions people have when first diagnosed with Charcot Foot. She tackles the hard question, “Am I going to lose my foot?” and the logical one, “I’m non weight bearing, how do I shower?” and everything else in between.

I Miss My Shoes: Living with Charcot Foot is a quick but helpful read for anyone living with Charcot Foot. Our only complaint is we want more. We are encouraging Jessie to write a full-length book on Charcot Foot and we hope this eBook is just the beginning.

We reached out to Jessie to visit with her about the eBook and get her thoughts. Below are our questions and her responses.

Q. I Miss My Shoes: Living with Charcot Foot released today. How are you feeling about the release so far?

A. I am thrilled about the release! I’ve been working on this for awhile and it’s nice to see the project come to fruition. As the day as progressed and copies have sold I’m reminded that with each publication about Charcot Foot we are educating people about this condition and hopefully increasing awareness.

Q. When you were diagnosed with Charcot Foot did you ever imagine you would one day be writing a book about it?

A. NO! When I was diagnosed with Charcot Foot I was devastated. Here I was, a single mom with a 10-year-old and a baby and I couldn’t walk! I was terrified and depressed. But time passed, and the more I looked for information about Charcot Foot the more I realized there needed to be publications written by people with Charcot Foot about Charcot Foot. Our stories and experiences need to be shared. Before I knew it, I was writing an eBook.

Q. We have had the opportunity to work with you in the past, so we know you have a wicked sense of humor. Can you share a funny Charcot Foot experience with our readers.

A. You know me well! Laughter is the best medicine and I’m always searching for the funny side of life and Charcot Foot. One particularly funny experience happened when I first returned to work after my diagnosis. I was three weeks post op, non weight bearing and using a knee scooter.

I rolled into work that morning like usual and worked through my lunch break, not leaving the office until the end of the day. As I was leaving I noticed white marks along the carpet by the front door. It looked like paint on the carpet. I thought to myself, “What asshole traipsed paint all over the carpet?” I was pretty annoyed some jerk would track paint all over the place.

As I rolled across the parking lot, still thinking about that jerk, I noticed something. The paint line continued across the parking lot but it was accompained by something else. One shoe print, over and over. It sunk in. The parking lot stripes had been painted that morning before I got to the office. I was the jerk tracking paint across the parking lot and carpet! My scooter wheel and one foot print was all the proof I needed. I really was the asshole!

Q. If you could only give one piece of advice to someone living with Charcot Foot, what would it be?

A. Take care of your mental health as well as your physical health! This condition can take you to some very dark places emotionally. Seek out help if you are struggling with depression, anxiety, PTSD, etc.

We thank Jessie for taking the time to answer our questions. We encourage you to buy a copy of I Miss My Shoes: Living with Charcot Foot.

Living with disability after Charcot Foot diagnosis : Charlie’s Story

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Charlie was diagnosed with Charcot Foot in both feet in 2007 at the age of 49. Charlie had been a truck driver for 25 years at the time of his diagnosis. Due to the complications of Charcot Foot he was disabled and unable to return to his work. Charlie has agreed to share his experiences with us.

Disability Determination

When Charlie was diagnosed with Charcot Foot he was in the active stage in both feet. He was put on non-weight bearing status and both feet were placed in boots. He remained non-weight bearing for 25 weeks. He had six weeks of vacation time, four weeks of sick time and another six weeks of temporary disability to help get him through the first 16 weeks of being non-weight bearing. By week 17, Charlie knew he was in trouble.

“Week 17 came and I was screwed,” Charlie said. “There was no money coming in but the medical bills didn’t stop. I was angry and depressed. Here I was, a grown ass man, and I couldn’t walk to the bathroom or pay my bills. It was one of the worst times in my life.”

With help from his family Charlie made it to week 25 when his doctor released him from non-weight bearing status and allowed him to begin walking again with CROW boots. Though he could now walk he couldn’t return to his career as a truck driver. He felt fortunate to find a job as a dispatcher for a trucking company. The pay was less but he was able to work. Unfortunately, his time working didn’t last for long.

“I only worked about six weeks before I developed a large ulcer on my left foot,” Charlie said. “Before I knew it I was in really bad shape.”

Charlie’s condition deteriorated rapidly. The ulcer in his left foot was infected and he was also battling a severe kidney infection. Charlie found himself in the intensive care unit of his local hospital with a diagnosis of sepsis. His family wasn’t sure if he would survive the ordeal as the doctors had told them to brace themselves for the worst. Charlie survived the sepsis but his left leg was amputated below the knee.

“I wasn’t with it before the amputation, my mom had to make that decision for me,” Charlie said. “I know it was hard for her but when I finally came around and realized my leg was gone I wanted to be dead. I wanted to be dead for a long time.”

Charlie was severely depressed on top of being very weak from the extended time in a hospital bed. After six weeks in the hospital he was discharged and went to a rehabilitation facility about two hours from his home. While at the rehabilitation facility his sister and the staff spearheaded the efforts to get him approved for disability.

Disability Approval

For some people who apply for disability the process can be quite lengthy. In Charlie’s case it didn’t take long for him to be approved, approximately three weeks. This was likely due to the fact that he was at the rehab facility where he remained for two months. While there he learned how to transition from his bed to a wheelchair, how to shower safely and regained his strength.

“Looking back those people did a hell of a lot for me,” Charlie said. “They taught me a lot and they put up with a lot of shit from me. I was mad and depressed and a real asshole.”

Living with Charcot Foot disability

It took years for Charlie to move past his anger and learn to live with his disability. He admits there are still days he gets angry but it is no longer his primary emotion. He has learned how to cope and says his depression has lifted as well.

In an effort to keep the depression and angry away Charlie spends time trying to enjoy some hobbies. He can longer drive his beloved semi’s but he has found a new love for fishing. He never had time to fish before but says he makes it a point to go fishing a couple times a week now. He has also connected with other people online through an internet gaming service and says the connection with others, even on days it’s hard to get outside, helps him keep going.

Charlie fishing

He offers a bit of advice to others living with Charcot Foot and adjusting to a disability.

“It’s going to be damn hard,” Charlie said. “It’s not easy and it sucks. But you just have to find some things you still enjoy. You have to keep talking to people and being involved in life somehow. The more you sit around feeling sorry for yourself the worse it is.”

We very much appreciate Charlie’s willingness to share his experiences with Charcot Foot with us. If you would like to share your story, please leave us a comment.