Charcot Foot Support

Charcot Foot

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

by

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

by

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

by

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

by

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.

Charcot Foot Stages

by

Charcot Foot is a serious condition. It can lead to deformity, disability and amputation. The earlier Charcot Foot is diagnosed and treated the better outcomes a patient will experience. When Charcot Foot is diagnosed it is done so in one of three stages, acute, sub-acute and chronic.

Charcot Foot Acute Stage

When in an “acute stage” a patient will likely experience significant swelling, the foot will be warm to the touch and will likely be red. Frequently, misdiagnosis occurs during the acute stage as the symptoms are mistaken for signs of infection. During the acute stage, significant damage can be done to the bone structure of the foot. If x-rays are done during this stage they will likely show fractures and dislocations. 

During the acute stage of Charcot Foot patients are most likely placed in a boot or cast to immobilize the foot. They are also encouraged to remain non-weight bearing until the acute stage has passed.

Charcot Foot Sub-Acute Stage

The second stage, known as the “sub-Acute stage”, is characterized by healing. Patients will begin to see a decrease in swelling, redness will subside and the temperature of the foot will begin to return to normal. During this period the bones can still be damaged so it is important to remain non-weight bearing. 

Charcot Foot Chronic Stage

Stage three is known as the cool phase or the “chronic stage”. During this period the foot should have minimal swelling, no redness and be of normal temperature. X-rays performed during this stage will show consolidation of the bone. During this stage, patients are considered stable. The foot is not worsening in condition but will not improve. It is important to remember each stage can occur more than once and can occur at varying times in either foot.

Always talk with your physician if you have concerns about what Charcot Foot stage you are in. Only a doctor can make an official diagnosis.

The Five Best Knee Scooters for those with Charcot Foot

by

When you have Charcot Foot or other foot problems you are likely to experience a period of time when you are non-weight bearing, meaning you can’t put any weight on your foot. This used to mean you were destined to use crutches or a wheelchair during non-weight bearing periods. Not anymore! Now there are a variety of knee scooters on the market to improve mobility while you stay off your feet.

So how do you choose the right knee scooter? There are so many different brands and styles on the market it is hard to know which one to pick. We have made a list of the five best knee scooters for those with Charcot Foot. We have tried and tested an assortment and these get our approval. While researching knee scooters we looked at durability, difficulty level for folding the scooter, price, tires and brakes. These are the five best knee scooters we have found!

KneeRover Steerable Knee Scooter

The KneeRover Steerable Knee Scooter is one of the best knee scooters on the market. It is affordable, easy to put together, sturdy and comes with a basket attachment. This scooter works well going up and down ramps and brakes gently. It is available for purchase in a variety of colors which is a nice option as well. This knee scooter does fold easily and can be stored in the backseat or trunk of a vehicle.

The OasisSpace All Terrain Knee Scooter

The OasisSpace All Terrain Knee Scooter is another favorite for us. The All Terrain Knee Scooter has air filled tires and is a bit sturdier than other scooters on the market. This scooter is great to use in the yard as it maneuvers well on rougher terrain. If you are sick of sticking to sidewalks, this is the scooter for you. If you have young children or grandchildren and are living with Charcot Foot it can be hard to keep up with them. This scooter allows you to easily maneuver around the yard so you can play outside with them. It also comes with a basket attachment, folding handle feature and adjustable seat.

 
 
This image has an empty alt attribute

KneeRover GO Knee Walker

The KneeRover GO is the smallest, most compact knee walker we could find. It is lightweight and easy to fold and store. It would be the knee scooter to keep at the office, use for quick trips to the mall or airport, or putter around the house. We love the lightweight feel and agree it is easy to get in and out of the car and folds up small enough it can be stored easily.

Draw backs are that it does not come with a basket attachment. A basket can easily be added but will incur an additional expense. The other downside is this scooter doesn’t do well on rougher terrain. However, as long as you stay on smooth services this is a great knee walker!

ELENKER Steerable Knee Walker

The ELENKER Steerable Knee Walker is available at a great price. It’s one of the most affordable knee scooters we could find. In addition to being priced well it is surprisingly comfortable. The adjustable seat has a slight curve to pad the knee which prevented knee pain during extended use. It’s a nice feature we have found on only a few other models. It also comes with a basket attachment and folds.

KneeRover PRO

The Knee Rover PRO is the top of the line knee scooter. You will shell out some serious money buying this knee scooter, at least $300. But there is a reason why, it’s the best of the best. It is an indoor outdoor aluminum scooter with shock absorbers. It can take you easily from smooth sailing on a sidewalk to navigating gravel. The amazing thing is your body won’t tell the difference. It’s sturdy and smooth riding, no matter the terrain. It comes with the attachable basket and folds. The seat is adjustable as well.

Which knee scooter are you using? How has it helped you navigate life with Charcot Foot and foot problems? We want to hear from you. Leave us a message in the comments and share your favorite scooter with us.