Charcot Foot Support

Foot pain

The impact of Charcot Foot deformity

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Charcot Foot most often leads to deformity of the foot. The repeated weakening and fracturing of the bones in the foot cause the foot to become deformed. Many people with Charcot Foot deformity experience a “rocker-bottom” after their arch collapses. The deformity caused by Charcot Foot can cause many complications and impact those with Charcot Foot significantly.

Foot pain and ankle pain

The deformity caused by Charcot Foot can lead to foot and ankle pain. When bones fracture and consolidate it can cause pain because the bones don’t heal correctly and at times there are bone fragments in the foot. Those fragments can press against the nerves and tendons in the foot and cause pain. The “rocker-bottom” can also be painful. Pressure on the bottom of the foot can increase pain. Additionally, because of the deformity there may also be bony protrusions on other areas of the foot which may be painful.

While breakage of the ankle is less common with Charcot Foot there is still a potential for ankle pain. The AFO braces or CROW boots usually required for those with Charcot Foot can cause weakening of the ankle muscles. The lack of regular movements and use of the ankle due to the restriction of the braces causes weakening. Then when you do use your ankle more it is likely to hurt.

Mobility issues

Charcot Foot deformity is a primary cause of mobility issues. When in the acute stage of Charcot Foot most people are non-weight bearing so their mobility is impacted. But even in the other two stages of Charcot Foot the deformity can limit mobility.

The “rocker-bottom” destabilizes you as you attempt to stand and walk. The lack of balance often makes walking difficult. Even if you can walk for short periods the deformity can make it difficult and painful to walk for long distances.

Orthotics

Because of Charcot Foot deformity orthotics will most likely be necessary. Orthotics, braces, boots or inserts, help in several ways. First, orthotics help to protect your feet from additional injury. Boots and braces in particular serve as a layer of protection for your feet. The hard casing surrounding your feet may not be comfortable but it does help protect your bones.

Custom made orthotics are created using a mold of your foot and leg. Every bony protrusion, the rocker-bottom and any misshapen toes will be accounted for. The custom made orthotics ensure you won’t feel pain when wearing them, which means they shouldn’t cause any sores or wounds on your foot. We wouldn’t describe orthotics as comfortable but they should never be painful. If you feel pain or have any wounds or sores you should return to your orthotist immediately.

Foot deformities of any kind aren’t what any of us want. But the reality is foot deformity is a part of life with Charcot Foot. By wearing proper orthotics and following your physicians direction you should be able to manage the pain associated with foot deformity. Never hesitate to discuss any concerns or pain you have related to foot deformities with your physician.

The things we miss

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Living with Charcot Foot means living without quite a few other things. We all find ourselves lamenting the things we miss from time to time. Too much of that can send us into a depression or unless our anxiety. But on occasion it doesn’t hurt to acknowledge the loss of the life we used to live before Charcot Foot became a part of it.

We Miss Our Shoes

We miss our shoes, the adorable ballet flats and the warm Uggs. We even miss those steel toed work boots and cowboy boots and rain boots. We miss slippers and flip-flops. We miss the ease with which we would slip on those shoes before we had to wear AFO braces or the dreaded boot. Some of us miss our shoes so much we have kept a few pairs we will never wear again just because we can’t bear the thought of letting them all go.

We Miss Walking

We miss walking, with ease and without pain. We miss those strolls around the block with our dog or our children. We miss the idea of just getting up and walking to the mailbox without worrying about our braces or pain level. We miss the simplicity of a trip to the grocery store without being concerned about far we will have to walk once we are in the store.

We Miss Our Independence

We miss being able to do our own grocery shopping and preparing our own meals. We miss having the freedom to hop up and make a quick trip somewhere without having to plan things out. We miss taking a shower without concern about falling. There are times we want to scream because we are sick of asking others for help and want to be able to do it all on our own again.

We Miss Our Balance

We miss walking up stairs and not having to grip the handrail. We miss dancing, even though we might not have been good dancers. We miss feet that didn’t have rocker bottoms that leave us shaking and clumsy. We miss not stumbling when we walk or being able to stand up quickly without fear of tipping over.

We miss a lot when we live with Charcot Foot. Over time we learn how to accommodate for the lack of balance and challenges walking. We adjust to orthotics and inserts, boots and knee walkers. We learn to ask for help when needed and claim our independence in other areas. Eventually we are even able to let go of those last few pairs of shoes and embrace the sturdy, practical shoes that keep our feet protected. Even though we adapt we still have to acknowledge the things we miss.

Please, know you are not alone. We are all missing something, we are all grieving. We don’t have to do it alone.

Living with Charcot Foot: Joe’s Experience

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Navigating life with Charcot Foot has been a difficult experience for 72-year-old Joe. Joe was diagnosed with Charcot Foot in 2016. He has agreed to share his experience living with Charcot Foot in an effort to help others.

Living with foot pain

Joe had experienced foot pain for many years. He described the neuropathic pain as intense and unrelenting. He would experience intense pain on the top of the foot and on the sides of his feet. He also had numbness and tingling in his feet and legs.

“The foot pain started in my early 50’s,” Joe said. “It was intense but I tried to ignore it. I didn’t mention it to my doctor very often, I didn’t take pain pills, none of that. I was just going to tough it out.”

Toughing it out didn’t work well for Joe. He had difficulty sleeping due to the pain and began to stumble when walking. Ten years prior to his Charcot Foot diagnosis he stumbled and fell while coming up his front steps. He experienced his first break at that time but didn’t know it for several weeks.

“I fell and broke my foot and I still ignored it,” Joe said. “I don’t know why I was so stubborn. But I ignored it until I almost couldn’t walk, weeks later. I was put in a boot for six weeks but it didn’t heal well. That was the beginning of the Charcot I think but my doctors didn’t diagnose it until 2016.”

For years after breaking his foot he struggled with swelling in his foot and continued foot pain. Joe continued to ignore the problem and wasn’t completely honest with his doctor about how he was feeling. The lack of medical care likely increased the damage being caused by Charcot Foot.

Mobility issues

Due to the continued foot pain and the failure of Joe’s foot to heal properly he began having mobility issues. By Christmas of 2015 he wasn’t able to walk up the stairs to his front door.

“I was trying to carry in some Christmas decorations in 2015 and I couldn’t do the stairs,” Joe said. “The pain wasn’t bad but it was like my feet wouldn’t work. I couldn’t put enough pressure or enough strength to lift myself up the stairs. My daughter saw me struggling and then I had no choice but to get to the doctor.”

Joe may have avoided dealing with his mobility issues and medical concerns but his daughter did not. She was persistent, making appointments for Joe and attending them with him. It took a handful of appointments with different doctors before he was properly diagnosed with Charcot Foot.

With a diagnosis the reality of Charcot Foot treatment began to sink in. He spent six months non weight-bearing and struggling to live life with mobility issues.

“Crutches, a knee scooter, boots, I hated it all,” Joe said. “I couldn’t figure out how to get things done around the house without being able to walk and living on my own. It took a lot of creative thinking and I figured it out but it was a pain in the ass.”

Joe says crutches didn’t work well for him because he had such poor balance. He preferred using a knee scooter and became quite adept at getting around the house on the scooter. When in public he would use the knee scooter or if he was with his daughter she would push him in a wheelchair. It was a blow to his ego but he adjusted.

“I was telling a guy who was recently diagnosed with Charcot Foot that it felt like this condition stole my manhood,” Joe said. “I could do all kinds of things before this and prided myself on being independent. I’ve had to adjust to a new way of living. I’ve had to learn to ask for and accept help.”

Joe’s Best Friend

One of the biggest helps in Joe’s life is his best friend, Skip. While Joe doesn’t have a good leg, Skip has four legs and a big heart. Skip is a chocolate lab and Joe’s constant companion. Though not formerly trained as a service animal, Skip performs many duties for Joe and makes his life easier.

“Skip does so much for me,” Joe said. “Skip opens doors for me when I’m not able to walk and I’m using the scooter or crutches. When I need to get up and I’m not close to a piece of furniture I push up on Skip. When I’m walking and start to lose my balance he automatically leans into me to help brace me. He is the best dog a guy like me could have.”

Joe says Skip is just one way he has had to think outside the box to find a way to navigate his new life with Charcot Foot. After spending so many years living independently he had to change his perspective and learn new ways to cope and survive. Though the journey has been a challenge Joe says it’s worth it.

“I don’t want to have Charcot Foot,” Joe said. “But I have it. It will never go away and we all have to find a way to continue living. When I was first diagnosed I thought about just throwing in the towel, hanging myself and calling it quits. Now I’m glad I didn’t. Life isn’t perfect, but it’s still a good life.”

We appreciate Joe’s willingness to share his experience living with Charcot Foot. You can read about the experiences of Jessie, Beth, Jennifer and Charlie as well. If you would like to share your experience with Charcot Foot please contact us.

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.

The Five Best Knee Scooters for those with Charcot Foot

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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.

 
 
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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.

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.