Charcot-Marie-Tooth: Finding a Massage Therapist

“Professional Massage Therapist”
Photo by Ryutaro Tsukata

To my disappointment, I have to begin the challenging journey again to find a massage therapist. It’s been around five years since I had to do this. In the nearly twenty years that I have been using massage therapy for Charcot-Marie-Tooth (CMT), this will be my fourth therapist.

I began using massage therapy to help with muscle cramping, muscular and nerve discomfort, and what I call constricting – it feels like something is drawing the muscle together causing awful pain particularly in the feet. The therapy has proven to be effective in keeping me moving and enjoying life. Since I have been seeing a massage therapist, the pain has reduced nearly eighty-five hundred percent. However, I confess this has been because I have a session every three weeks. I saw my first therapist every week for several weeks, maybe even months until I got comfortable with every two weeks. Then, it was a gradual move to three weeks. Currently, I am still at every three weeks but I am aiming for four weeks with the new therapist.

First and foremost, when I look for a massage therapist, I am looking for someone who is certified medical massage therapist. I do not want a pleasure massage which you can book at a spa, beauty salons, gyms, and the like. While most of those are great for those who need it, I need the professional trained in medical massage, more specifically Deep Tissue Massage.

A recent consideration I had to make was whether I wanted to meet with a male or a female massage therapist. This time, I gave it some thought because there is a male massage therapist in a local town who is supposed to be one of the best massage therapists in the area. I have always used a female massage therapist as I find them willing to listen to my needs to help me accomplish them. Also, until I saw this guy listed with a local shop, there weren’t any male massage therapists with any reviews. For me, I decided I would consider him if the others didn’t work out. It’s really your comfort level or preferences.

An important consideration is how far I want to drive to the massage therapist’s practice. Where I live, it isn’t uncommon to drive a distance for products and services. However, there is always a “traffic factor” in going anywhere. Since driving isn’t a favorite pastime anymore, I decided to try and find someone as close to me as possible. Also, in my experience, I can be very wiped out and sore after a massage session. Therefore, driving becomes a even more of a challenge that I do not enjoy. Since I am retired, it’s easier to make appointments to miss the traffic.

Doing an internet search and asking your medical professional may provide some good leads on a massage therapist. Be aware that many primary care physicans aren’t very supportive of massage therapists and their work. Part of it is the lack of documentation for its benefits.

My first question when speaking with a person is whether they are certified to perform medical massage therapy specifically the “Deep Tissue Massage.” Also, I will share a little bit about why I need it. Since I don’t care to go into a lot of details on the phone, I’ll typically share that I have a form of muscular dystrophy with which massage has helped me live comfortably. If the person seems like they may be someone I can consider, they will ask more questions and I will share more with them. I have had a few candidates tell me they aren’t the therapist for me. Also, I like to ask about their licensing and credentials. Are they should be willing to learn more about their trade too? A good massage therapist should be always learning or taking classes to improve their skills.

When I find someone who might work out, I will share that I have CMT along with as much detail as I am comfortable sharing. Also, I will share the www.cmtausa.org website which has an abundance of information which can help the therapist. I shared that I have Type 1a. Not only does it allow the therapist to learn about you, but it also helps you to learn about them. If they are willing to go on the website and learn about you, that says quite a bit about their professional interest in helping you.

I have found someone I am considering and made an appointment. This is only the first step. A professional massage therapist will have some paperwork for you to complete. They will probably go over your phone conversation again highlighting important information to clarify anything they have questions about.

The session begins. The session can be done with you being unclothed or dressed in your comfort level. Comfort level means to shorts or your underwear or what you might deem most comfortable. For me, I prefer unclothed because it provides less hinderances for the therapist to do their work. Also, clothing is uncomfortable for me which I will explain in future posts. Anyway, I view the person as a medical professional which means they will handle nudity as my medical doctor would. Anyway, I am always draped, and privacy has always been their concern.

During the session, pay attention to pain and any discomfort. The therapist will benefit from you letting them know if the pressure they apply or some spot they hit or some muscle touched is painful. I must say, this is the challenging part for me. I have lived with so much pain in life, and pretty much ignored it, that I feel a bit awkward pointing it out. However, it is to my benefit for me to do so.

After the session. In my experience, the therapist will ask “how are you feeling” or any issues or some such. For me, that’s a hard question to answer. My pain and discomfort, usually an overwhelming tiredness, will not become apparent until later in the day or the next day. I will explain that and be certain to note any discomfort or issues I think the therapist should know about to share in the next session.

A few further thoughts. To me, it is important to be comfortable with the person you are selecting to do the massage. Frankly, you’ll be nude for the hour or so of your appointment. Being nude with a medical professional requires a bit of trust. While I haven’t had any emergency to arise during a session, I think it’s important that you are comfortable with the person possibly seeing you nude despite all good intentions or efforts to prevent that. If you are someone completely uncomfortable with that idea, then stay away from being nude. A work around can be figured out. Franky, when I first started massage therapy, I wondered what would happen if there was a fire or some explosion. I can’t run out of the building without clothes, and it is possible the therapist would see me without them. So, we talked about a plan. Silly? Naw, not really.

Keep a journal of how you feel, what hurts and when, after the massage therapy appointment and during the time leading up to the next appointment. Bullet points will suffice provided you can remember what they mean when referencing them later. For me, a journal proved to be priceless for several reasons. One, I get busy in life and may forgot important points to share with the massage therapist. And, two, it helps to provide points for the therapist to work with. Finally, it will be fun to look back and see how much you have improved physically.