Neck and shoulder pain

I'm curious as how many of us share secondary issues to our CMT. Do you have Diabetes, Blood Pressure, High or Low, Autoimmune, Allergies, or spinal or back problems. Even Sleep apnea and Respiratory issues can be a secondary issue due to CMT.

I've had a lot of trouble with waking with my neck being tight and sore and even having a slight headache. Seems if I lay in bed for more than 4 or 5 hours this is an issue.This tends to bring my Blood Pressure higher and have to address it before it does climb out of control.

Do your doctors recognize these can be issues not directly caused by CMT but comes secondarily as " the head bone is connected to the neck bone, neck bone connected to the shoulder bone" and so on.

I had a physician say to me, "Your CMT doesn't cause breathing problems" and I looked at him in astonishment and said, "Hmmm, well if I stick my CMT foot in my mouth ,would it affect my breathing then?" Heart and respiratory issues can arise as our muscles are atrophying, so weakened muscles can cause weakened function. Nerves mis-firing and not signaling can cause the system to fail. My father had to have a pacemaker put in b/c his nerves were not allowing the heart to pump and he would pass out. Awareness of our whole body is extremely important. Cut the electrical circuits (nervous system) and you never can tell what it affects.

I have an eyelid that droops and has since age 13; due to CMT muscle weakness and a nerve that was damaged (which CMT doesn't allow to regenerate) with a high fever when I had measles. CMT did not cause the problem, but it is the cause that it cannot regenerate and heal.

I find new affects are being discovered, and it is through groups like these where others share and identify these issues. Tell us, What is your secondary issue or issues.

~CM

Hi CM,

I also think I am having secondary problems from CMT. I have had a chronic tired painful feeling in my back since I was in my twenties. I has grown steadily worse throughout the years. Now that I'm in my early fifties, the pain never goes away, I have trouble with sleeping, changing positions, and I cannot clean the house without having to stop and rest every half hour because of the unbearable pain and fatigue that makes me feel like I will just collapse on the floor. I also, have shoulder and neck pain that is getting more and more painful. My pain medication has not been working like it used to. My hip feels like it's going to pop out of place a lot lately too. These things seem to have gotten worse over the past year. Any suggestions?

Jazzyjaid,

We do share many of the challenges of CMT and I'm in late 50's, and really noticed changes in my 30's but didn't know or understand until age 40 that I had CMT. I've learned to PACE. Practice Activity Considering Energy.I try not to make many long term goals as I tend to frustrate and disappoint myself in the long run. My overall outlook is to make larger tasks easier by prioritizing and breaking them into small increments. As you mentioned, take breaks often and change up your activity. Don't do a task that is repetitious in movement or muscle involvement without breaks often or changing it up a bit. Use tools, like an electric cart at the market, wheelchair when a great deal of walking is involved and many have found the use of a roll-o-matic walker to get house chores done easier. You can push (helping with balance and stability so not to fatigue or stress about possible falls)it with things in the basket, such as laundry or small items you are clearing from the room and putting away in other places. We tend to stumble, fall, turn ankles etc when we are stressed just to walk, especially in unfamiliar environments. So, utilize these tools, to become ABLE rather than considering yourself "disabled". We won't gain our ability back until we are willing to accept our limitations and find other means to give ourselves those enjoyed activities and by using things available to us, such as braces, AFOs or cane etc. Being disabled is a challenge, but to find ourselves incapacitated permanently can be a decision we change by being willing to use mobility tools that people in the past did not have.I wish you well, and as I've said, anytime you need a listening ear or want to discuss things more in person, send me a message and I'll send you a phone number to contact me.

CM

Pain management for me is best with massage therapy. It is affordable for me by buying certificates at a reduced rate to use during a month or 6 week period. I ration them as we live primarily on my very small disability check. Sometimes medicare or other insurances will cover if under a doctor's care considered physical therapy,or under chiropractic.