I have a 6 week wait before seeing a neurologist. Interested if other people have experienced the following, particularly the pain aspects:
Pain in ankles, top of foot, sole and heel (bottom of foot paper-thin), feet drag slightly, I stumble and walk very, very slowly with stiffness up back of legs. Pain levels surprise me since I thought numbness was more a sign of CMT. Walking is exhausting. Cramp pains in palm of hands, extending to wrists with acute pain sometimes. But also - less important and maybe something else - pain up arms, in shoulders and hitting a low vertebra on my neck (could this be nerves backfiring to the point where peripheral nerves enter spinal cord?). Nerves tingling, sometimes fizzy up and down calves. Sometimes cold hands, cold feet but not too extreme. I don't have arched insteps and only one slight hammer toe each side. I'm 65, so a late developer! Doctor originally thought the ankle pain was arthritis but now nerve pain very obviously not confined to joints (sometimes shocked by noise/hypersensitive). I'm using pain-killers of course, but keeping moving short distances so muscles don't waste.
Welcome! I am so glad you posted a discussion to the group!
I am the only one who does not have CMT, I suffer other things, and am a helping hand here on the group.
I hope that you can get some solid answers and a good plan from this new Neurologist. I'm sure that the folks who have CMT will be responding to you shortly, as I just featured this discussion.
Glad you found the group; Support and connection with others can be very positive and be effective in gaining more understanding.
Pain is a very big part of CMT, and yes, it seems an oxymoron b/c of nerve damage. But, the doctor explained to me the damaged nerves are not signaling to the brain but those that are perceiving, send out , magnifies signals to make up for those not firing or misfiring. The thing is that nerves are sending to the brain to tell it "something is very wrong" and so your brain receives it as magnified or multiplied. My hands and feet both were feeling like someone beat them severely with a ball-pen hammer, back at the time of diagnosis. Cramps are muscles feeling fatigued and also nerves trying to tell the body to rest. The fizzy feeling, was explained as sometimes with more humidity in the air the body is reacting as an electrical short will sizzle. The misfiring of nerves are shorting out so makes sense in trying to send signals sometimes they would fizz or sizzle. My lower legs and feet most of the time stay icy cold even in summer. My hands also and when they are cold I do not feel them but others say they are cold. This is circulation issues again stemming from lack of proper nerve signals. But, the maneuverability is hampered. Some with CMT have flat feet rather than high arched feet. I have nerve pain in neck often; I also have back issues, lower and upper as the muscles have atrophied; Lots of sciatic issues.I worked physically hard my whole life and was not diagnosed with CMT until age 40; I am now 57 and the progression is pretty severe. I did allot of damage b/c of not knowing and pushing myself so hard to keep up with peers. Now that I know I do manage pain and everything far better. Knowing your limits and respecting the body's ability is key in managing this disease. Please continue to ask questions are pose any subjects and we will try to participate in the thread of conversation! I hope you do find help and answers; as knowledge can empower when you have ability to understand what the battle is and a little more how to cope. ~~~ CM
Firstly, thanks to everyone! And particular thanks CM, some of your descriptions of what's happening are really helpful. You're very articulate and pretty much a hero. Thanks! 20 years ago I had a lower back slipped disc which laid me out for 4 months ending in an operation. The pain was worse than this. Even with pain killers I was getting 25 mins sleep a night max. Crawling to the toilet. Completely immobile and painful enough to be crying without noticing it. I learned then a) to count because you know it will ebb and flow so present pain will peak then ease - the task is to hold out b) to live inside the pain as if you were an underground miner or a swimmer planning to pop your head up sometime. A Trojan Horse approach. c) your psychological vulnerability increases so you're an organism turned inside out. It's very exposing.
The connections you make with other nerves and muscles and conditions are really helpful. Thanks!
And thanks SK. I could shorten the wait for the neurologist if I went back to my GP because of a critical degeneration in the condition. If it's life-threatening it comes first, which is right. I care for people with illnesses which are more dangerous than this and know the system pretty well - and I will use it! It's only recently I told my GP that my feet were dragging and I was stumbling i.e. not compensating for small irregularities in the pavement. Also that my legs feel shaky and 'off kilter' somehow, as if they were unable to bear the load. The feet don't always point forward quite as they should. I'm stumpy and slow. And walking up a short street uphill is a marathon. Up till now the concentration of ankle pain suggested arthritis. The first episodes of hand pain I put down to cramp. When they went on for a few days I began to suspect a connection. After getting my doctor's referral I went on the climate march on Sunday, walked far too far talking to my son and all the symptoms multiplied, confirming everything about nerve rather than joint pain.
I have no fat pads on the bottom of my feet, makes walking on anything but padded carpet or in shoes, very difficult. I will occasionally experience "drop foot", I take powered magnesium supplement (CALM), which has almost eliminated my leg cramps. Calm is available at Health food/vitamin stores. I use a recumbent bike which keeps me active without putting any excessive pressure on my left ankle. I will be praying for you, I also found a shoe from New Balance called the "Rollbar" which gives me much grater stability when walking. If you have a "good feet store" near you, you can try them on but I recommend that you look online to purchase since the online prices can be considerably less expensive. I bought a pair through OnlineShoes for $83.96 which was approximately $58.00 less than at the good feet store. http://www.onlineshoes.com/new-balance-rollbar-shoes-search. I will keep you in my prayers.
So glad I've helped in some way; It always lifted my spirits to reach out and share and know someone else "gets it"! I felt better knowing it was not all imagined or fabricated in my own mind. And to be a part of a group and have that understanding was what began my healing, not the physical, as the likelihood of that in CMT is not happening, but the healing of our spirits is what is important as it helps us to cope, accept and move on.
You are so right, CM, being able to connect with others who share the same ailments is so validating, as you will always begin to doubt things, it's just human nature, but within minutes of joining a good support group, you immediately relate to others! And I think it does help you to overcome and move on through life.
Stretching (key in Yoga) is very helpful thing for CMT as so much of our pain and discomfort is caused from shortened tendons and atrophying muscles. Keeping as much flexibility with movement and putting some balance and control in our movement is always stabilizing. Not only physical benefits, but emotional ones as well; Focus, and meditation is part of the Yoga process and is extremely beneficial in getting in tune to our own personal limits and strengths an feeling empowered and in control!
Deep breathing and focusing on our breathing technique can be a real beneficial thing and especially at times before retiring for bed.
Hello,CM,i too am 57 soon to be 58,was formally diagnosed at around 42 but I think ive had this all my life.Oxytosin;i too experience foot pain on top of foot among other places.CM:I think is interesting that we are of same age and affliction.I too have worked all my life trying to do more than I should,and pride kept me from slowing down.I worked 34 years on one job which I finally retired with a s.s.disability. My job was a construction millwright and I worked mainly with .my hands and back.In the end my constant falling down and pain issues took its toll ...anyhow nice to have plently in common.
CM said:
Great suggestion AmsterdamEric;
Stretching (key in Yoga) is very helpful thing for CMT as so much of our pain and discomfort is caused from shortened tendons and atrophying muscles. Keeping as much flexibility with movement and putting some balance and control in our movement is always stabilizing. Not only physical benefits, but emotional ones as well; Focus, and meditation is part of the Yoga process and is extremely beneficial in getting in tune to our own personal limits and strengths an feeling empowered and in control!
Deep breathing and focusing on our breathing technique can be a real beneficial thing and especially at times before retiring for bed.
Thanks for sharing mrmustard! It is interesting that we became aware of our disease that plagued our early lives, but b/c we pushed on as if "normal" we have done some damage and then find what is the affliction. Many with CMT do push harder than even the average person and the statistics are, we work 7X harder at any given task ,just b/c of our difficulties we struggle with much more effort to do the tasks. It is no wonder, Fatigue is one of our greatest complaints.
Push on and find ways to be able, but also try new things and develop new interest to keep doing if you can. Whatever you find you CAN do, enjoy it! Life's too short to not have joy in it!
I used to have a lot of ankle pain. It was actually referred pain from my shins and calves because I was over-exerting small, atrophied muscles trying to keep my feet up when walking. The AFOs nearly eliminated this but moved the pain into my thighs and knees since they now do the minor adjustments that my ankles (immobilized by the AFOs) used to do. My knees are getting bad because muscle atrophy for me extends just above the knees into my thighs.
As far as shoulder and neck pain, my mom (also CMT1A), now 66 years old, had a big problem with this. She ended up being recently diagnosed with occipital neuralgia which caused her migraines and major neck, shoulder and scalp pain. The problem was multi-fold. A CMT affected phrenic nerve weakened her diaphragm so she was using very shallow breathing handled mostly by upper body muscles. The occipital nerve was enlarged due to CMT and because of the upper-body doing the breathing, it inflamed both that nerve and the surrounding muscles which then squeezed it. Not good. She will soon go into surgery to cut out the muscle to make more room for the nerve. The migraines are too much for her.
I don't know if this is your problem at all but it if you have a weakened diaphragm, your breathing could cause the shoulder and neck pain. For me, weakened hands and forearms cause me to do extra work with my shoulders which cause shoulder and neck pain.
FWIW, I am also hypersensitive (to many things, noise included) but I don't know if that has anything to do with CMT. Hard to say.