CMT and Pain

Presented at the 2018 CMTA Seattle Patient & Family Conference
by Gregory T. Carter, MD
Chief Medical Officer
St. Luke’s Rehabilitation Institute
University of Washington
Dr. Gregory T. Carter is chief medical officer of St. Luke’s Rehabilitation Institute and clinical professor at Washington State University’s College of Medicine. His clinical and research interests center on rehabilitative and palliative care of neuromuscular disease, with a particular focus on pain, fatigue and quality of life.
An avid researcher and writer, Dr. Carter has co-authored over 200 peer-reviewed publications, including the first studies on longitudinal physical performance, phrenic nerve and pulmonary function, and neuropathic pain in Charcot-Marie-Tooth disease.
Dr. Carter is the recipient of several prestigious research awards from medical societies across the United States, including the Excellence in Research Writing Award from the Association of Academic Physiatrists for his work on exercise in animal models of neuromuscular disease. After graduating from Loyola University Chicago, Dr. Carter began his residency and fellowship at the University of California, Davis, earning a Master’s in Physiology along the way and serving as a MayDay Pain fellow at the University of Washington.

[@DianesSideHustleIdeas]

There is still nothing better than hearing it straight from the horse's mouth. And with CMT that means hearing the patients story, views, and opinions of how CMT has affected them. Doctors and scientists still do not have the knowledge needed about how Charcot Marie Tooth disease affects the patient. Everyone is different. Yes, we all suffer with chronic pain, but the levels of how badly CMT has deformed a patients feet varies greatly. For example, even though a family is diagnosed with CMT1A the severity can differ in each family member. My grandfather, mother, and my sister all have CMT1A but yet I suffered the worst with it badly deforming both of my feet. My other family members only have one foot that got deformed over the years. And CMT skipped my middle sister completely. (Lucky her) By age 31, I was in a wheelchair. I could no longer cope with the excruciating pain of walking on my badly deformed feet. I became permanently disabled in 1997 at the age of 33. I was not going to settle for living in a wheelchair for the rest of my life. I began searching for an orthopedic surgeon with knowledge of CMT. Which was few and far between, but I got lucky. I found a surgeon who was very knowledgeable about CMT. He reconstructed both of my feet and got me walking again. It took 3 years, but it was very successful. It is 2019 and I am 55 years old and still walking. I have been working on my own as a CMT patient supporter and educator since 2013. I've done it all through Facebook. I recently started a KZbin Channel to share my knowledge and personal story, and I'm praying it will inspire others to not give up. No one else in my family followed my footsteps. Sadly, that's their own faults. I would love to share my story and knowledge with the world and that's what I'm trying to do. I hope you will start following me, education and support is the key to CMT patients and families.

[@charmy2882]

What’s the name of your channel? My specialist has always believed I have sensory CIDP but recently I stumbled across CMT. I have severe neuropathic pain, muscle pain in my legs, arm muscles, my bones feel like their ready to pop through skin especially in every toe. I have always had severe hammer toe, bad ankles, my lower legs look like no muscle n I do have muscle atrophy it showed on my last ultrasound on ankles which showed Achilles tendinopathy

[@houseofbaboshka6456]

This is very good info. I injured my foot and went to the hospital and saw a Doctor who knew nothing about CMT. They put a bandage on which was not enough and because of this many years later I have severer problems with this foot now. Thank you for this info.

[@charlesellis4470]

Because of my CMT, I decided on a right below the knee amputation. I didn't know I had CMT until a few years ago. I'm now 60 years old. I went to the University of Washington and eventually had genetic testing because the doctors couldn't figure out why my neuropathy came on extremely fast and spread. I'm not diabetic. My results came back that I had CHARCOT MARIE TOOTH DISEASE and SMA (SPINAL MUSCULAR ATROPHY). My doctor misread the results and so I went another year not knowing. In the meantime my tendon in my left leg to foot tore in half dropping the high arch I had in my left leg (High arches a sign of CMT, which the doctor should have caught). When my arch dropped I began having right knee pain and due to that I found out my right leg was more than a half inch shorter than the left. That lead to having my right shoes modified. The pain of walking got to be too much. I was walking on bone because of no padding on the bottom of my right foot. One doctor wanted to add more hardware to my toes, which I already had 13 screws, 4 plates a pin and a wire in my right foot. Another doctor wanted to remove my toes which still wouldn't fix my problem. I tried a brace and that caused a lot of pain. Next step was below the knee amputation and that is where I am today.

[@sabrinagrapes6807]

I love coming across stuff like this. I'm a 38 year old woman with CMT. The one thing that is very painful is trying to get in contact with doctors who have and/or specialized in CMT. But the ones my primary doctor and "symptoms" specialist won't help because of the type of medical insurance I have. In the last 2-3 years, I've gone from being able to walk to now not able to walk 15-20feet without falling and either acute injuries to breaking and tearing something and so now I'm now having to use a wheelchair. And then in 2015 was also diagnosed with CIDP. I'm at the end of my rope and need help with getting to see specialize in CMT

[@terramareverburg]

I've been suffering all these neuropathic pain all my life until lately. I recently found out coeliakie (gluten intollerance) is the cause. So no bread, beer or other gluten-containing food anymore. No problem because there's plenty of other things to digest. Take care, fellow patients! Michiel H.Verburg.

[@TheWaterman1000]

Look into Ketogentics diet. It's helped me to a point.

[@bethanyleanne2134]

This!

[@shirleynascimento2075]

O q vem a ser: Dieta cetogênica? Eu tmb estou com CMT.

[@jimmyhand1259]

I have CMT1A noticed by age 1. I walked terribly wrong for my entire life. My hip collapsed at age 45, total hip replacement at 47. I then broke my femur below that 9 years ago along with many broken bones in my feet and ankle. I Well they tried amitryptiline? spelling and it made me feel much worse. No suggestion of Nortripiline? I cannot tolerate codeine so no hydrocode, etc. I am 65 on very low dose of methadone just to survive the muscoskelatal, nerve and joint pain. I have to often use aspirin, tylenol and am still in terrible pain. I would like to try cannabis but my pain doctor forbids it.

[@houseofbaboshka6456]

I am weary in the use of anti depressants for CMT

[@rendagolden2496]

I take blood thinner so cannot take aspirin and NSAIDS.

[@PIXELSURPRISE]

I wonder when it gets added to the list of 50 drugs we must avoid…. Do you know?

[@melissareed2042]

I live with CMT and I will say the main pain I deal with daily is a form of extreme restless legs syndrome and extreme fatigue. Any thoughts on what to do?

[@nonodaclown9033]

I had to quit my construction job because I was getting to much fatigue and to much pain I had a surgery years ago I pretty much walk on my ankles

[@charlesellis4470]

Contact the HEREDITARY NEUROPATHY FOUNDATION

[@alycciapowers]

I wish I could just find a group page I can talk to people with CMT

[@charlesellis4470]

Contact the HEREDITARY NEUROPATHY FOUNDATION

[@PIXELSURPRISE]

There are some decent cmt groups on Facebook Not all run by vaccine pushers :)

[@alycciapowers]

Cuz I was born with charcot-marie-tooth disease syndrome and I want to talk to people

[@teresachessher7991]

I wish I can talk with someone too.

[@PIXELSURPRISE]

How’s that vaccine campaign going? Everyone doing better than ever now? No adverse reactions or anything, no new medical diagnoses or anything, Right?