Interview with a Fibromyalgia Patient Receiving Craniosacral Therapy

Interviewed by: Julie Labbe, COTA/L 9/14/04

I, Vivienne, participate in a fibromyalgia pool therapy program at the Concord Centennial Senior Center. Deborah Miller, MS, OTR/L from Total Body Therapy] came and gave us a presentation to the support group that we have begun and offered us a free session. Normally I’m extremely skeptical about some of the alternative therapies but I have a daughter who’s a PT and she has had some experience with myofascial release (lives in CA), so I was very intrigued. And also the fact that TBT takes care of all the insurance and the referrals that was a big lure for me also.

Basically it was the physical explanation for why it works. The anatomical, biological explanation for why it works just made so much sense for me that it sounded like it would be just the thing. So I wanted to give it a try.

Did you have any goals or expectations when you first went into treatment?

I didn’t know what to expect. I’d been in a car accident and I had trauma to my shoulder blade area, so ever since then I’ve had quite a lot of discomfort in the shoulder blade area and it affects everything I do, especially since I’m a pianist and I use all those muscles. So my life has been compromised since that accident; I’ve had problems with my wrist, around the whole back, and up until now nobody has really taken that very seriously on my part. We have x-rays, they turn out okay and they tell me “This is going to go away, it will get better, give it a couple of years”. So my hope was that this kind of therapy would really have an effect on that area because I do believe it’s a soft tissue injury, so I was just hoping that maybe I would have some relief.

What was it like for you the first time you walked in?
After having the presentation that Deb gave, I felt more than comfortable about it. I had a tremendous amount of confidence in her philosophy, in her approach, and as I said I’m pretty skeptical on the whole but I just had this feeling that this was for me, that finally there was something that I could feel really comfortable about trying. This really called me.

July – first visit. Accident 1998.

I was pretty constantly uncomfortable and I have a lot of tension/tightness around the shoulder blades, upper back, and pretty chronic discomfort.

The first session was wonderful. When I left there I felt relaxed. That was the first thing, I felt very relaxed all over. The first thing that I noticed which was not what I had gone in for was an increase in my energy level. I was really suffering from intense fatigue. I didn’t expect anything to change with that (fatigue) and I don’t think I talked with Deb about that. That was the first thing I noticed, all of a sudden I had more energy I had a very busy weekend and I expected to feel like I normally felt after a busy day – really awful, and I didn’t. And I kept thinking, “well maybe I slept better, moved around better” I didn’t relate it to the therapy. But when I went in for the second session and Deb asked how I was doing, I said, “I have more energy”. Every time I went I felt more and more energy, less and less fatigue, that was such a bonus. I had learned to function with pain, but fatigue was awful because it breeds inactivity and that breeds depression. That has been such a bonus.

My pain level has consistently decreased. Very gradually, but consistently. I’m seeing her once a week just because I didn’t want to spend my summer going to appointments but now I’ll see her twice a week. Last week I didn’t get to see her at all, and I noticed that the pain was coming back. Certainly not to the level that it had been, but I really noticed a difference without a week going. It has been steadily decreasing.

What was your main goal when you went?

My goal was to get someone to treat the chronic pain in the shoulder blade area. For somebody to pay attention and see if I could lose some of the tightness, the discomfort, and free it up so that I could get back to playing the piano again without hurting all over. That was goal my goal, but I’ve gotten a lot more than that from the therapy.

Had you not been playing the piano because of this?

At first I couldn’t play because of the back (after the accident) it took me a year or so before I could sustain any type of practicing. During the last year and a half I’ve developed severe tendonitis in my wrist. That’s why I can’t play. The tendonitis is improving but it’s still pretty bad. Yesterday I saw Cindy who is a hand therapist and I think that if I could see her because she is specific with the hand that would be helpful.

Deb seems to feel that the wrist problem is connected to the cervical problem – it that’s the case, maybe I can get to the point where I can begin to get back my skills again. I haven’t played for so long now that it’s beginning to affect the quality of my playing. I’ve been advised not to until we get the problems corrected. I have a production coming up Thanksgiving so that’s why I’m going twice a week, so I have to get back to the piano. I will be playing the week of Thanksgiving and the week before I will be paying quite a bit and for two or three hours at a time. So somehow between now and then I have to build up to doing that.

You’ve achieved your original goal.

Yes. And my immediate goal now is to get help with the wrist to get flexibility and strength back in my hand. I’m moving right ahead on all my goals because I’ve set a goal that three years from now, when I turn 60, I’m going to hike a peak, so I’m looking forward to a life without so much fatigue and a period of time when I can get back to exercising and build my stamina so I can hike a peak. The fibromyalgia symptoms and my fatigue took over my will power, sand now that motivation and energy is coming back “I can do this again” so it’s exciting.

You mentioned that chronic pain and fatigue breed depression. Have you had problems with depression?

Depression – all therapists will tell you have to exercise to fight depression and I know I should but that’s the problem. Chronic pain and fatigue make it not possible. The therapists are telling you “you need to” and “you should” and all I ended up doing is feeling guilty because I wasn’t doing it. Whereas seeing Deborah what she told me was “no wonder” there’s so much stress and strain already on your myofascial system that until we can release a lot of that, just ride with it. You’ll be able to exercise, and you’ll be able to do that again, and that just makes so much sense. Because what happens is that because I’m feeling better, I get more motivation. With regular PT I really did end up feeling more guilty than anything I just hurt too much or was too tired to do it.

I know you’ve already answered this in many ways, but let me ask the question “How would you describe the treatment you receive?”

It’s gentle, it’s completely therapeutic, and it’s just restorative. It’s deeply relaxing, it’s gentle and it’s therapeutic.

Would you recommend this treatment program for others?

Absolutely. “I’ve never received such personalized concern from caregivers.” When you’re there do you feel safe? “I feel safe, I feel respected” “I feel like I’m the only person in their practice sometimes. At times I’ve had two people working on me at the same time – I feel so incredibly attended to that sometimes I worry about them burning out”.

I should add that somewhere along there I started seeing a naturopathic doctor in Nashua, having incredible digestive problems. Conventional doctors were giving medications to treat the symptoms. I’ve been diagnosed with celiac disease. Some of the treatments I’ve been getting with that are also increasing my energy and allowing me to sleep. I just feel so blessed to have gotten these two together.