Fibromyalgia Monthly Newsletter

Fibromyalgia Monthly Newsletter

April, 2005

With featured articles on Fibromyalgia treatment and Chronic Fatigue Syndrome, information on treating Fibromyalgia, reviews of recommended products, and interviews with practitioners.

Physical Therapy and CFS

by Mary Robinson, MS Ed

Article reproduced from The Pediatric Network

Many of you may be sitting out there thinking "PT, not me! I tried that and it near killed me." And I am here to say that if this was your experience I encourage you to continue looking. There are some wonderful physical therapists out there, just like there are some wonderful docs. But we need to learn to hunt and peck to find them.

When considering PT as a therapy for yourself or for your child, you need to be careful to make sure the therapist truly understands CFS or fibromyalgia and that their treatment plan is compatible with your goals. There are therapists who make it their main goal to "get you back in shape" and they may rely heavily on an exercise regime that may well cause a setback if it doesn't kill you first. A therapist my son once went to felt that exercise would help him immensely. When I tried to explain that too much was not good, he commented, "but look at the rosy glow in those cheeks. This is wonderful for him." My explanation of rosy cheeks in CFS fell on deaf ears.

This time around I have been fortunate to have found the opposite. In the practice that my daughter goes to there is more than one therapist and they each have their own techniques that compliment each other and give my daughter more relief from your pain and symptoms. But what I find comforting and reassuring is that they truly understand the illness and have a deep compassion for the many patients they treat who suffer from this and similar maladies. Patients come to the clinic with diagnoses of CFS, FM, MPS (Myofascial Pain Syndrome) to name a few. And the therapists understand these ailments, as much as they can, and try to help the patients to understand what is going on in their bodies that they can help. A session begins by asking my daughter what hurts today. And then the work begins. They assess her prominent pain each session and work on ways to relieve that, while also trying to help her muscle tone and comfort on a more long term basis. They understand that some days she can do a lot, and other days she can tolerate very little. They are full of understanding and always offer an empathy that makes her feel someone truly understands the pain and can at least attempt to offer some relief.

They are teaching my daughter how to listen to her body. They explain what it is they are doing and then they ask for her feedback. They do not push her to the point of more pain when she says to stop. She is learning to listen to her body better because of this. She is learning when a little stretch will help, and when it is too much. And somedays all that she can handle is the therapeutic touch of one therapist who does not even need to touch her body to do her work. She gently guides her hands over the painful areas and works with the body's energy flow. I was skeptical at first, but it really works! Home therapy is also an option that this practice provides so home bound PWCs may also benefit from the soothing touch.

As you can see, we are very happy with the practice that we go to. And in talking to other patients and parents of children with the illness, I know I am not alone. There is help out there, all over the country. You don't have to tough out the pain and just live with it. There are many new methods of massage and therapies that are proving to be very helpful to CFS patients. My recommendation is to first talk to other patients in your area who may have experience with local therapists and can guide you. When you call the office try to determine their approach to patients who live in chronic pain. Are they interested in assessing your pain and coming up with a treatment plan or are they simply interested in getting your muscles conditioned so you can walk a mile or run a marathon? (If this is the approach then run do not walk to the nearest exit.) Do they open themselves up to learning the many new techniques out there and attend seminars to learn new ways to ease their patients pain? The difference that I have seen in PT in just 7 years is wonderful. There are so many new approaches to dealing with chronic pain, and new techniques that therapists can learn. Do they accept your medical insurance as payment? We have been fortunate to have most of our daughter's treatments covered.

We have encountered many techniques and have had great success with a number of them. I am going to list off the various methods and brief explanations for you and leave the rest up to you to decide if you think these are areas worth exploring.

  1. MYOFASCIAL RELEASE MASSAGE: As I understand it from talking to our therapist there is a layer of fascia (a covering) around the connective tissue. There is also a layer of tissue where fluid is between this tissue and the fascia. Waste products and adhesions can build up in this fluid and the idea of the massage is to "release" the waste and adhesions from this area. First he finds the trigger points by gently guiding his fingers up the spine, the hips, the legs…He finds the painful areas by feeling for a slight pulsing sensation under the skin. (he let me feel it and I could!) When he finds an area he first puts pressure on it with 2-3 fingertips and then pushes with the palm of his hand up and out over the side, or down the leg. He said that this is a "grossly generalized description and theory." He said the whole theory of myofascial release is just that a theory. There are lots of suppositions and not a lot of certains. There are so many disorders of the connective tissues that it just makes sense. It has to do with the sympathetic and parasympathetic nerve systems, but that is all I will say, as it would be an entire article to explain it well, and it is outside my area of expertise to attempt. He did say that along with finding and applying pressure to the trigger points, stretching of the area is helpful, maintaining a relaxed state, and deep breathing while the trigger point is being worked on. It is helpful to the patient if the therapist takes breaks during the massage as it can be tiring and sometimes even a little painful. Maintaining a good fluid intake also is important. This massage technique has been very helpful for my daughter. She has received other massages, but the myofascial release massage seems to have more long lasting benefits to her feelings of comfort for a more sustained time.

  2. THERAPEUTIC TOUCH: It is my understanding that this theory states that there is an energy force within each one of us. There is positive energy and negative energy. Someone who is truly in tune with the body can feel the heat a body generates by simply holding the hand a few inches off the skin. Painful areas give off warmth that the therapist (or attuned patient) can feel. Then the person doing the massage gently moves the hand down over the body until they move that negative energy out of the body. I am told you must massage it out an extremity such as a hand or a foot. You want to do one continuous stroke say from the hip, down the leg, over the heel, the foot and right off the toes- tossing that negative energy to the winds. I know that there is a great deal more to this massage technique but it is not my wish to explore that today. But I encourage you to be open to this therapy if the opportunity presents itself.

  3. TENS UNIT- Many of you may have used a TENS (Transcutaneous Electrical Nerve Stimulation) unit in the office of a therapist before. It is the unit that feels like little shocks or hits to the area the patches are stuck too. For some PWCs this is a soothing experience. It took my daughter a while to appreciate the benefits but once she did, the therapist suggested a unit for home use. Our insurance covered the cost of the unit and we now have it at home to use whenever needed. It is a tiny unit that she can attach to her belt and is a little larger than a pager. The pads stick easily to whatever spot she wishes to stick them and there are a multitude of settings depending on the type of massage she wants. When I tried it I LOVED it. It is like a little thumping on the area such as a thumb or hand tapping you. It can be set to different intensities and patterns. It would have been worth buying it even if we had to pay for it out of our pockets. (Cheaper models sell for as little as $50.00 and more expensive ones for hundreds.)

  4. SELF MASSAGE TECHNIQUES are another at home technique our therapist has taught us. One myofascial release massage technique is to go to the painful area, take your fingertips of both hands and put them on the area. You first move the fingers up and down in the opposite direction. If the right hands fingers are moving up then the lefts are moving down. After 30 seconds or so you take the findertips and move them together on the skin and then pull them apart. You are squeezing the skin together and stretching it apart. The idea is to break up the painful areas and help the blood circulate to this area. Or I think that is part of it. We also purchased self massagers for home use. They are not electric, but are very effective. They have different size balls on the end to assist one in applying pressure to the trigger points as is done in the myofascial release massage. A patient can sometimes help sooth the pain in a painful area, by having one of these devices available. We use it to massage our daughter's back and it is much easier than a regular massage, and feels wonderful.

  5. POOL THERAPY: Many of you may be aware of the benefits the water offers to many CFS patients. For some it helps to regulate the BP by maintaining a constant pressure on the body so that the blood does not pool in the extremities. Our therapist has a special therapy pool. The exercises they guide one through are slow and gentle and monitored by the therapist. What is easy in the water though may cause exhaustion later on, so one needs to monitor themselves to not overdo it too much at first. Many of the exercises can be done in our backyard pool at home. Massage in the water can be an extra treat. With my daughter there are two main goals the therapists keep alluding too. One is to improve her posture and the second is to help her to develop improved muscle tone. They describe her muscle tone as either being too tight and in spasm or too loose and floppy. She appears to have no middle ground as normal people do where she is in control of this. They find the effect of the water wonderful in helping her to develop better control.

  6. BALL EXERCISES: Have you ever seen the giant exercise balls? They can be used to do many kinds of exercises without the usual strain. They can also give a great massage by rolling on it or by having someone else roll the ball on your back and legs.

  7. THERAPEUTIC HORSE BACK RIDING LESSONS: This is something I had never heard of and when I did, I did not think my daughter would qualify. This is a program for kids with disabilities and I could not understand how we would qualify. And then our Physical therapists both mentioned the program to us, and suggested it could really benefit our daughter. The lessons are very reasonable. We pay $70.00 for 6 one hour lessons. My daughter's lesson only has one other rider, and each rider has 2-3 volunteers who walk by them until they are solid on the horse. They not only learn how to ride, but they do exercises and stretching on horseback. She is already benefiting in ways of improved posture and muscle tone, not to mention FUN. The therapists feel this has been a marvelous complement to her PT sessions.

  8. SACROCRANIAL THERAPY: As I understand it from our Physical Therapist this technique is a more refined therapy along the lines of the Myofascial Release Massage. A therapist first must train in the Myofascial Massage and then move on to more concentrated training in the SacroCranial Therapy. No on in our area is trained in this technique so I have no personal experience to share. But I do know of two children who are receiving this treatment and are very excited about the benefits they have reaped from it.

I hope that I have been able to offer some of you ideas that may encourage you to pursue the idea of PT for yourself or for your child. Our therapist has told us that our daughter will probably always need a massage at least monthly and that it is something we should plan for. She has been going to PT for 6 months now. We have managed to get her down to one session every 7-10 days. If we go longer the tightness and pain return. I Am hopeful that we can learn enough self care techniques so that we can help her to become as independent as she can be. My very best to you all as you seek new or tried and true techniques to make your pain more manageable.

The Parent's Corner
Physical Therapy and CFS by Mary Robinson, MS Ed
http://www.pediatricnetwork.org/parenting/parentscorner/LN01-PT.htm
(Published in Lyndonville News, July 2001)

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