Thoughts on coping with CMT pain

Last Saturday I went to a chronic pain support group meeting that was more a they- tell-us than a we-tell-them but it served its purpose.

I didn’t stay for the entire meeting because it began an hour late and the room was freezing cold for me. I soon lose vitality in a cold room and I could feel myself beginning to wane into the second hour. I was so cold, I just wanted to curl up in ball and go to sleep.

Dr. J. Henry, Ph.D., a pain research scientist from McMaster University in Hamilton, ON, and his wife, Dr. Kiran Yashpal, are the leading people in chronic pain support in our area. They help form and speak at support groups and they are in touch with everything going on re chronic pain. Thank God for this wonderful couple. No matter how well we cope, we all need hope, and they bring it.

To tell you that I have had neuropathic pain for 20 years doesn’t help you but it might explain why I’m so interested in CMT pain. I feel as though I am sitting in a pile of hot steel wool every day, almost all day. My bed sheets feel like sand and I burn where my clothing touches my behind and the backs of both legs to the knee. My right side is the worst. I use cold packs under my right thigh to dull the worst pain. Other than that nothing works or alleviates the pain. No painkiller, nothing…and I’ve tried more than 30 including ingested marijuana, Sativex, Lyrica, Cymbalta, a nerve block, you name it.

Dr. Henry gave us a list of dos. Most of us may know them but we also know that all of us are in different places with our pain.

Own your pain. It took me a few years to realize that my pain was MY pain. It wasn’t something someone else had to fix. I had to learn to live with it. It was mine. No one could see it. No one else could feel it. It lives with me every day like a mean little cousin I hate. Funny though, when it does go away, and that’s rare, I actually search the corners of mind to see where it went. Then, I celebrate the wonderful gift of a few minutes, hours or days without pain. Once you take ownership of your pain, you stop blaming everyone, you stop expecting someone to “fix” it and settle down to work living with it. No one says you have to stop searching for pain relief but you no longer feel the anguish you do when you think it’s someone else’s responsibility. There’s a certain peace and calm when you make it your own.

Dr. Henry also stressed that people in chronic pain need to get the right information – I’ll add…we with CMT need to find the right information about CMT so we can make informed decisions about a great many things including having family, what type of schooling and kind of work we do, etc. If we know our CMT well, we know what causes us pain. Because we are all different and our pain differs, what causes me pain may not be painful to you BUT if you know what causes your pain, you can avoid it.

Chocolate, tea, coffee, any stimulant, causes me pain. Cold doesn’t help. Stress and anxiety also causes me pain. I can have a nightmare and wake up with the pain surging when I went to sleep almost pain free. I can wake up feeling pretty comfortable, start thinking about something that makes me anxious that I have to do that day and the pain creeps back like a 7 out of 10 carpet of fire. Switch sides of my brain and begin planning a painting and it goes back down to a 2 or 3. Knowing that stress and anxiety causes me pain, I try to avoid it. That’s not easy and that brings me to pacing yourself. This is one of the most difficult things anyone can take on. We are driven or we wouldn’t be doing what we do in spite of our disease. People who are driven rarely pace themselves. They go at things full tilt and love the challenge…deadlines and all.

I don’t pace myself unless I have to. But my body tells me when I have to. It literally scares the SH out of me. I lost the use of my right hand driving. I know why it happened. My hand formed in the shape of the quad grip on my steering wheel. I can drive but I can’t open my hand to do other things. Thank God I’m left-handed.

Many years ago, I lost the use of my fingers typing. For years I used little pencils to make the big middle ones stiff so I could hit the keys with two fingers. Then they wouldn’t stiffen. Time to make an adjustment. I now type with the knuckles of my little fingers moving my arms from the shoulder. It likely looks like I’m playing the carillon keyboard that makes the bells in the cemetery ring.

Pacing myself means I don’t paint using my hands and wrists and then do an entry for this blog or write an article the same day. I have to let things rest and hope that they recover when I give them time. No time…no recovery … and permanent paralysis over time.

We also need information about what type of CMT we have, what we can expect, what we can do for it, what we can do for our pain and what is being done in the world of pain research. Unfortunately, most general practitioners know nothing about CMT. Find an MDA clinic or visit Dr. Michael Shy at Wayne State in Detroit, MI. or Dr. Greg Carter in Seattle, WA. Dr. Steven Baker at McMaster in Hamilton, ON runs a CMT clinic.
Slowly, slowly, we all do our homework. We eventually internalize that fact that, yes, we have CMT. It is incurable. That’s a fact of life for us and we’re going to be taken on an interesting journey because of it.

We may join a support group or log onto an internet chat line and we discuss it with family if they’ll listen. But for the grace of genetics, you ended up with CMT and they didn’t. It’s no one’s fault. It happened. As Dr. Henry says, “Dance with those who hear the music.” If people don’t understand or don’t want to understand, don’t waste your time and energy on them. There will be those who do and they are the ones with whom you can discuss your CMT and CMT pain. We also need to talk to our doctors. The hard part to that is, as I mentioned above, most general practitioners know nothing about CMT and some even go by the old tune that there can be no pain associated with CMT. Pain is secondary to CMT and in most cases caused by something CMT brings about. In my case the pain is caused by degeneration of nerves in the spine.

Trying to find information on CMT and pain is not easy. Dr. Greg Carter in Seattle firmly believes that cannabinoids are the answer, or one of them. My GP won’t even discuss it. I had to go another route and someday I’ll tell you about my journey into growing pot. For now I’ll just say it doesn’t help me.

Another on Dr. Henry’s list was quality of life. We have to try to maintain a certain positive quality of life – pain or no pain- and that isn’t easy. However, after you get over your, “How can I possibly live with this?” period and realize that you will live with it and you’re going to have to cope – you begin to start thinking of how you are going to build a life around your pain.

To cope I don’t do mornings. They are my time to get myself in gear, do what needs to be done to my person and just breathe. I do afternoons for meetings, etc. If the meeting is at night, too bad, unless it’s something I really want to do and then I plan ahead, get extra rest, and don’t plan anything for the next day so I can recover. I also have to dehydrate myself because I can’t get up off a regular height toilet. That leaves me unable to use a public bathroom when I’m out somewhere. Being dehydrated much of the time leads to constipation, stomach upset and a whole host of other problems…even dry lips and eyes. So, when I am home, I drink like crazy, and it helps. My at home toilet is set up with a Versa frame so I can lift myself off with my arms. I’m a pro at hitting the seat in two seconds flat after I get my slacks zipper undone and the slacks down. That takes longer because my hands are so weak.

I sit on cold packs at meetings and try to keep warm by always having a large light shawl in my scooter basket. My hands get tucked under my armpits. My feet freeze. I don’t go a lot of places where I have to sit for a long time with my legs down. I’ll leave a meeting before it’s over if I’m getting worn out.

Exercise helps build the endorphins in my brain against pain. Hubby, Ron, and I work out three times a week doing resistance exercises together. They keep my right shoulder away from the surgeon and my back hurts less when I’m at the computer if I exercise regularly.

I try to laugh. America’s Funniest Home Videos break me up especially the dog parts and a good fart joke makes me dissolve in laughter. Must be my old English background…all that pub humour.

I don’t do much guest speaking anymore because it stresses me out too much. When I know I have a guest speaking engagement coming up I also know I’m in for weeks or months of extra pain.  As soon as I wake up in the morning and think about it, the pain caused by anxiety comes flooding in and it stays there all day. Accepting a guest speaking engagement is like accepting painful punishment. I’m fine once I’m on stage, it’s the anxious days and weeks leading up to it that do me in.

I also don’t put up with people who sap my energy any longer. Recently, I excused myself from a conversation because the man kept telling me the medical profession was out to kill him and had been for years. I can’t help what he thinks but I do care what he does to me while he’s acting out his tirade. Maybe it’s part of maturing but I no longer feel bad when I save myself from someone who is verbally abusing me, whether they know it or not.

There is more to Dr. Henry’s list and someday soon I’ll talk more about CMT pain but I’d love to hear from any of you who are in pain. Share your CMT pain through the comment box on this blog and we can all learn.