Charcot, Marie, Tooth Disease

I have Charcot’s and I would be happy to talk to anyone that may be suffering as I am… Sometimes it’s nice to speak to someone who is in your “shoes” l.o.l. But seriously folks, I’m not making light of a terrible complication of diabetes. However, a sense of humor is essential to dealing with diabetes or it’s associated complications.

"honk if you have Charcot’s"


What is it? My 15 yr. old has braces and is lousy at remembering to brush his teeth… he is great at taking care of his diabetes…just not his teeth. They just gave him a perscription for a mouth rinse cuz his gums are getting bad.

I took a quick look at old discussions here and found this one

It’s actually a form of neuropathy, and the “Tooth” in the name is after the name of a person, not your teeth.

OOps…sorry not anything to do with teeth! Just googled it!!!

It’s a pretty miserable affliction. I’m disabled now and on Social Security. Charcot’s is very debilitating. My right foot has totally collapsed and my left is always in jeopardy. All the bones in my right are broken and a couple of days ago the tendons tore off of the bones. I wear “Crowes Walkers” which are huge boots, similar to ski boots, that are just below the knees. It’s a complication of neuropathy that causes too much blood flow to the lower extremities. The calcium is washed away and causes the bones to be brittle. Just walking on them can cause them to break spontaneously. Fortunately (depending on how you look at it) neuropathy is somewhat of a blessing. There is not a lot of immediate pain but there seems to be a deep pain that I can feel very easily. It makes you not want to walk… Bottom line, keep your sugar in check. It’s the easiest way to avoid Charcot’s Marie Tooth’s disease.

I have Charcot’s foot. In fact, I am in the hospital right now facing amputation of my left foot. I was it was because the nerves (which are dead) have failed to send the messages to the foot tendons and muscles to do their jobs and keep the structure of the foot. Now they are collapsing and I actually have bone fragments floating around and sticking through the wound (which was starting to heal) on the bottom of the foot. I was walking with special boots but hope to get back into a regular shoe on my right foot. I hate the boots!!


I’m sorry to hear that you’re facing amputation but there are days that I wonder if that [amputation] might provide more relief than keeping feet that are so painful in so many ways. Mine burn, feel like they are going to explode, feel totally numb, get stabbing pains, dull pains, or deep aching pain. None of it is consistent though…It varies from day to day.

Only a person that is suffering with Charcot’s really knows The available meds for the disease are marginal at best. I have tried them all, with Lyrica being my current regimen. Lyrica helps a little, but has several side effects that I don’t like (constant drowsiness, mainly). But I know if I didn’t take it, the pains would be substantially worse. So I’m just stuck with what I have.

I don’t have any external wounds from the bones yet, but it’s a day to day concern. My arch is rocker shaped and protrudes making it painful to walk very far even with the boots. The problem with the tendons being gone, will almost certainly mean (according to my Dr.) that I will need fusion of the ankle in the near future. For now, he prescribed yet another brace that is a lace up affair, that looks like a high top boxer’s shoe with the toe cut out. This contraption is supposed to support the foot better after the tendon issue. It’s meant to be worn with a regular shoe but it cannot keep my poor arch from jabbing into the ground with every step I take.

Like you, I hate the boots. They’re heavy and awkward and my hips hurt constantly from wearing them. I have to stop and rest when I walk from the exertion required. I have little mobility in my home and it seriously impacts my ability to do even simple things.

I used to do a lot around the house, but can’t now because of the stupid boots. When we do go out, I use a little scooter, but that has about worn out and the insurance companies seem to consider them “recreational” toys vs. a necessary aid to a handicapped individual.

It seems now, that my only option is to pursue a power chair, which the insurance will pay for…but that creates a whole new range of problems. The least of which, is that I don’t have a vehicle that will accommodate a 200 lb. chair inside. This, of course, means that I would have to have a power lift on the back and since I don’t drive any longer, my wife would have to deal with it. We need a van, but can’t afford it right now. Our current vehicle is a lease and we have to turn it back in come this July. Not sure what exactly we’ll do then.

I guess that’s the hardest part of this whole thing for me, is the impact that it has on her. She’s been wonderful and I appreciate her more and more everyday, but it is a strain on her and I worry that she will get hurt doing something that I would have done if I were able bodied.

But everyone has issues and mine are neither unique or any more important than anyone else’s. We just have to take it one day at a time and try and keep our spirits up, as best we can. You do the same, maybe a power chair is in your future, as it is mine. But don’t look at it as a bad thing, but rather a way to restore your mobility, which will enrich your life and make things easier.

Good luck and keep us posted on your recovery…


I DO know what you are going through. Except for the arch problem. I have pain in the left ankle that is just absolutely searing! And my pain changes just like yours. I don’t know if it will go away after removal of the leg because there is something very common called “phantom pain” from the nerves. I would hope that that would be a minimal chance of developing this type of pain. After all, how much can God expect me to put up with?

I do have a power chair now. Since last May. Medicare paid for it. Of course, they think that it is only being used INSIDE and not out. If they find out that you are using it for other than getting around the house, then they won’t pay for any repairs. Why don’t they realize that if you need help ambulating around the house, you don’t need it for getting around outside. It’s worse outside because there’s nothing to grasp onto when I walk. But, of course, I don’t walk outside!! I did have a scooter that I used outside that the insurance company paid for when I wasn’t covered under Medicare. And I guess you can get a new chair or whatever every 5 years. I am hoping that this surgery will qualify me for a different kind of motorized wheel chair. One that can recline back some to elevate the legs. Oh well, we’ll see.

I don’t have anyone that cares for me. So, once I get home, I fend for myself. Sometimes that’s really, really hard on me. But I do it because I have to. If there’s something I can’t do, I either ask someone to do it and they gladly do it or I have to pay someone to do it. Siiiiiiiiiigggggggghhhhhhhhhh!!! Sometimes someone does something for me and not gladly. It is so hard then and you then don’t want to ask again!

Better go. More answers to do.


I also have a Charcot on my right foot. I’ve been in an “Aircast Walker” for 2.5 years now, was supposed to be 3-18 months initially, and still wear it most of the time. My arch is nearly completely collapsed and there are some bulges down near the front of the foot in addition to there being a bend on the one side so the foot may look crooked in a sense.

Shoe shopping can be a pain since I have to get custom orthotics to protect my other foot and since my right has changed shape in the past year, I have to get measured again for orthotics. The X-rays and bone scans are a bit more annoying, as the latter has a rather big break where you can either sit at the hospital or go back to whatever you want to do but you have to come back in 4 hours. Given that the parking at the hospital isn’t free, I tend to go back to work and then go back to the hospital though I have been to at least 3 different places in the 5 times I’ve had a bone scan done and on a couple of different machines. One seemed to do color pictures while the other was more black and white. The color also didn’t require me to move which was so much better than the other one where you have all these different positions to try to get into and have your legs strapped together so they don’t move while the pictures are being taken.

I just wanted to add my part to this discussion as I too know the pain that is “Shark-O” which doesn’t sound good when I first heard the nurses talking about it.