My interest was peeked even further by several classes I've taken in school. In my relaxation class, I learned more about what techniques are available and can be learned relatively simply without going to yet another professional, in most cases, the techniques we learned required only a recording at first, and then if the listener was comfortable with the technique she/he would be able to stop using the recording and conduct the skill from memory and adapt it to meet his or her needs. In my holistic therapies course, we discussed how the mind and body are really not as separate as western science and health care professionals think they are. We discussed the ways in which emotional states can interfere with our health and increase the effects of an illness. We also learned more about the therapies which can help us to use this connection to our advantage, and we discussed those which might need to be done with guidance from a professional.
The Beginning of Interest
As regular readers of this blog know, I've spent a significant amount of time learning about relaxation skills for managing chronic pain, and figuring out exactly which exercises might work for me. But other than in the relaxation class, I'd had very little guidance about how to use these skills to help with the pain from a professional's perspective. Occasionally, a nurse at the pain center would work with me on a guided imagery exercise if I was too tense after a nerve block, or if the doctors were especially worried about how I was coping with a tough time. What I never really had was the chance to work with someone who knew the techniques, new about RSD and was available to work with me in depth.. I also never really got good feedback on what my body was doing when I did certain exercises. I'd notice a decrease in pain, or I'd fall asleep, or I'd notice that I could handle the pain better, but I was clueless about what my heart rate was doing, what muscles were tense even when I thought I was relaxing, the changes in temperature which are common when relaxing, etc.
I also gained a great deal of helpful knowledge from web sites.
How to Cope with Pain's Pain Management class
was particularly helpful. I also compiled
a list of relaxation-related resources
which greatly expanded my knowledge. But still, I had some nagging concerns and my pain and anxiety continued to spin out of control.
Pain, Anxiety and a Melt-Down
Earlier this summer my doctor gave me a new opportunity. He referred me to receive biofeedback from an instructor who works specifically with pain patients in the pain center I receive services from. I've heard a lot about biofeedback and I was excited to get started, but also a little nervous. I had some doubts about whether I could even use this therapy, and I was so afraid that I wouldn't be able to learn to control the responses I was learning about.. I also had an irrational fear that if I didn't have a lot of muscle tension, or temperature change which could be picked up on the monitors, my pain would not be believed. Finally, I feared that I would not be able to use biofeedback at all, since much of the feedback which is given is visually represented on the screen with colors, graphs, numbers or shapes or games. I knew that I would need a professional who was willing to think outside of the box and team up with me to find an effective way for me to understand the feedback. Could I find someone who would do that?
I was fortunate enough to get an appointment for my first biofeedback session within a week after the original referral my doctor gave me. My anxiety has really taken a turn for the worst, and after being sedated for a nerve block, I broke down in tears. Even though I am blessed to live in a home where I am never in danger, I have spent the summer feeling completely unsafe and waiting for something terrible to happen. As the effects of the medication spread through me, I began crying and telling the nurse who pushed the drugs that "this is the first time I've felt safe in a very long time." I then explained that this was due to my own anxiety, not due to the actions of another, in other words, no, I was not being abused or anything. The nurse gave me more medication but I still couldn't relax. Even after I was wheeled out of the procedure room and into the recovery room, wrapped in a blanket and encouraged to rest, I just couldn't turn off the thoughts racing through my head. The nurse who was caring for me saw that I wasn't resting, and that I was obviously very distressed. She worked with me to do an interactive version of guided imagery to help me get past the crisis. She also reassured me and promised that my medical team would work together and find a better solution for my pain and anxiety. She also assured me that I would love biofeedback. I left the clinic feeling embarrassed for having cried and panicked and needed so much attention, but excited that I would get to try biofeedback. I hoped that the extra help would help me to relax with a purpose. I hoped it would provide me with some relief.
Session #1: Getting Started, learning the ropes and Breathing
On the day of my first appointment for biofeedback, I showed up early and, because it was toward the end of the day, my biofeedback therapist was running a bit late. Needless to say, I spent a lot of time wondering what it would be like. When my name was called, I found that my therapist was an empathetic, reassuring and kind woman who knew a good deal about RSD. She was also very flexible and wanted to make sure that I gained something new from using biofeedback. In other words, she wanted to build on the knowledge I already have, not reteach me relaxation with a "my way or the highway" approach. We spent about half of the first session going over the basic questions she needed me to answer. She asked questions about the anxiety and pain I experience, as well as what knowledge I have about relaxation. I told her that I knew about many of the relaxation techniques, but some (such as progressive muscle relaxation) make my ppain worse and when I'm anxious, I have a hard time even settling in and usually end up giving up because I can't relax. Once the preliminary information gathering was over, we could begin.
How It Works
Now that we had gathered all of the necessary information, we turned our attention toward the computer. Biofeedback is a great tool for any geek. The computer monitors various automatic processes in the body (depending upon what the therapist chooses to use), and displays the responses in some way so that the patient can start to get an idea of what is normal and what isn't for their body. For example, if the computer was monitoring muscle tension, I might see that my shoulders are pretty tense. The goal, then, would be to learn what "normal" or "relaxed" is, and be able to adjust the level of tension if it gets to high. The computer can monitor breathing, skin temperature and muscle tension for sure. It may be able to monitor more functions, but these are the functions I've gotten to work with so far. My therapist (let's call her C), told me that normally she uses visual representations on the screen for most of her patients, but with me, she would use sound and a graph which she could describe to me if I needed more information than the sound could provide. In essence, I would be playing with the computer and trying to create a positive change in the sound, but instead of changing the sound by turning up the pitch, or adjusting the rhythm from the keyboard, I would have to make those changes using only my mind and my body's reaction. In a way, it feels like clicker training for the brain, and in another, it's just another way to play with the computer. Suddenly, I have a way to understand what's going on in my body, learn techniques to create positive change and have fun doing it. C. didn't say all of this in so many words, but she did explain it well, and she was very accommodating toward my needs. She spent extra time between our first and second sessions to figure out how to best use the audio portion of the biofeedback setup.
Our first session focused on breathing, which is also something my physical therapists have been working on with me. C. put a special belt around my stomach and then helped me get comfortable in a recliner. She then helped me to get a feel for how to use my breath to relax more effectively. I told her that I often struggled to be able to slow down my breathing, and even when I could do that, my body rarely took a whole deep breath because of how tight and tense my upper body has become. She taught me to intentionally create a long pause after a breath and watch as my body naturally inhaled fully. Wouldn't you know it, it worked!
Since she wasn't comfortable with the audio output options yet, C. acted as my reader and described what she saw on screen. Once I'd gotten a better idea, she had me use a
The breathing and Mantra exercises on this CD to fight Panic Attacks
I practiced with this for the following week. I had already downloaded this CD, since I have found guided imagery to be helpful and although I don't think I've been diagnosed with panic attacks, some of my melt-downs have got to come close. I found that my practice sessions went well, and it was much easier to breathe properly because I finally had guidance about what breathing properly involves.
The second session began to establish the pattern of most of our future sessions. First, we discussed the exercises I'd been practicing and whether they seemed helpful. Then, I was fitted with the sensors we would work with for the day. That day we used muscle tension monitors on my shoulders and a temperature monitor on my right hand. At first, I was really scared about the muscle tension sensors since she told me they were EMG sensors. My experience with an EMG was increadibly painful and I refuse to ever submit to that medical test again in an area where I have RSD. I don't have RSD in my shoulders obviously, but I still wasn't sure I wanted her to use the sensors. She must have seen the look of fear on my face because she reminded me that nothing she would do in biofeedback was intended to be painful. She also showed me the sensors and I was relieved to see that there were no needles or electrical shock devises. She swabbed the area she used the EMG sensors on, then quickly and gently taped them down.
Next, we played with the sound on the computer and I was able to practice controlling my muscles to achieve a certain result. We tried to see if I could use progressive muscle relaxation, but the response on the monitor showed that that was not the best way to go. We also played with the temperature sensor, but I couldn't make that change without cheating.
Finally, we recorded a relaxation script onto my stream while I was hooked up to the sensors. We turned off the sound feedback for the recording, but she described what she saw on the screen afterward. I then used that script, which included a body scan and guided imagery to practice until our next session.
We used the same sensors again in this session, but instead of redoing the script we had worked with the week before, we first practiced with the temperature sensor (which I still didn't quite get the hang of). We used a technique called autogenic relaxation. I can't find an explanation of this technique which matches what we did, but the closest representation in audio format is on track two of
Letting Go of Stress
Basically, it consists of using phraises or affirmations. You get comfortable, start breathing deeply, and then begin to work through the body. For your right arm, for example "My right arm is heavy and warm" you'd say this as you breath, and you'd repeat it three to five times. There are multiple ways to do this, and you cover the whole body by focussing on one area at a time. When you're done, you feel deeply relaxed. That's where you can have fun with doing imagery or deeper affirmation work. It's also great for me as an RSD patient because, unlike with PMR, I don't have to tense my muscles and risk causing the spasms to get worse, and saying that my body is heavy and warm is good because my RSD responds well to warmth.
The work we started in that session would be important to draw from later.
In session four, I learned a great deal about my body. We used the muscle tension sensors on various parts of my lower legs and were actually able to see the spasms hit. I'd be sitting there, hearing the sound which signified I had some tension in the muscle, though not awful lot of tension. Then, wam, the feedback stopped, no sound. C. looked up in amazement "Did you tense your leg like that intentionally?"
"No, I didn't I felt a spasm."
"That spasm sent the numbers off the chart and out of range."
So, the first lesson is that the muscle spasms are bad, and i could see how much it effected my body when they happened.
The next lesson I learned was that I have a classic guarding pattern. I sit in a way which tries to protect me from further pain. In essence, I sit and stand in ways which put more strain on the rest of my body to protect the left leg. We noticed increases in muscle tension on my right leg because I used my right leg to balance as I sat. The guarding is something I don't realize that I'm doing, but it's something that is good to be aware of. This causes over-use in the right leg, which could contribute to injuries. I already have some pain and swelling, which I've always kind of attributed to being hit by that car last year. But from what I've been learning in biofeedback and in physical therapy, it's probably more likely that my right leg takes a lot of abuse because it hurts so bad to use my left leg.
Finally, we started working with temperature. We saw that my left foot is colder than my right foot, and we started trying to look for ways to work with warming my foot up using my mind. I wasn't successful, and the temperature stayed steady. My homework for the week was to try to teach my body to warm up my foot. I was to do this by using external heat at the same time as I worked with warming imagery. The thinking behind this is that maybe my body would get the clue.
The fifth session, which I had this last Tuesday, was also very helpful. We used tension sensors on my forehead and shoulders as well as some temperature sensors on my hand. I saw that my tension in my shoulders was very high and I also saw that I tried to breathe with my shoulders. I slowly learned to allow my shoulders to drop, get softer and become stiller.
With the forehead, I didn't have a horrible amount of tension, but I definitely had enough that it would contribute to a headache. I started to play with those sensors and learned what it feels like to have a relaxed muscle in the forehead. Working with the forehead is easier in one sense, since there were fewer muscles to worry about than there are in the shoulders. But it was also difficult because it's very easy to get tension in the forehead and not know it.
The work with my shoulders and forehead really helped me understand my body better. I talked with my biofeedback therapist about the challenges and insights I've found through biofeedback. So many times, the computer showed tension and stress and I didn't even pick up on it. She pointed out that I can't see myself in a mirror, and I can't see others and how they carry themselves.
I'm happy to say that my concerns about the accessibility of biofeedback for someone with a visual impairment were not borne out. The software and hardware we use has the ability to use audio in multiple ways. The feature seems to be pretty complex and can show quite a bit to the patient. Between what I hear from the computer (a rising tone, a break in the sound, an increase or decrease in volume), and what C. tells me about what she's noticing on the screen, I feel that I get a large amount of information. Even if the software didn't allow for this method of feedback, a willing patient and a supportive practitioner would be able to use the system to good effect. I'm confident that even if we didn't have the sound, I could have been successful if I was working with this practitioner.
I think that biofeedback is actually a great tool for someone like me who loves technology and who is always thinking "What if I try this" or "What does this mean?". My work with biofeedback is similar to beta testing a new piece of software or a new website. I'm learning how to use my body and mind better. Just as I would take the time to explore the interface and figure out how I can best use the software, I end up searching for the most effective way to help my mind influence my body in a positive way. Many of my successful lessons have come from my own question of "will this work better?" I''m exploring the software of my mind and the hardware of the body.
In other words, my interest in accessibility has actually been very helpful for my work with biofeedback. My desire to be a computer geek and "play" with the computer makes the biofeedback even more fun and helps me to be more successful.
If anyone is reading this and wondering if they can try biofeedback as a blind person, my answer would be a resounding "YES!!!!". The only caveats are those which have nothing to do with blindness. First, you must be willing to take responsibility for your health. If you're the type of person who doesn't think that your contributions to your health are important, you may have trouble with biofeedback. But if you are willing to learn more about your mind and body and make the effort to heal, you have a good chance at being successful.
Also, if you find reinforcement helpful, biofeedback may be a good thing for you. In the book Don't Shoot The Dog Karen Pryor mentions biofeedback as an application of the theories and principles of positive reinforcement (the theories behind clicker training), to the mind and body. Biofeedback uses the reward of a change in the feedback to reinforce the positive physical responses. Having used clicker training and biofeedback, I would definitely agree. If reinforcement is helpful for you, or you just like the "So that's what I'm supposed to be doing" feeling, I'd definitely recommend biofeedback.
I've had RSD for five and a half years now and these patterns of tension, stress, anxiety and pain have had a long time to settle into my body. The tension I carry has become normal, and I have no visual feedback to show the frown, the tension in the forehead, the clenched jaw, the raised shoulders and the guarding and bracing. It takes outside feedback to understand that these patterns are unhealthy or even that they exist. I feel very fortunate to have someone who is showing me the ins and outs of my body and how I live in it. Even if I don't learn to increase the circulation in my foot, the knowledge of what it feels like to really truly relax the muscles is valuable enough. I'm not done with biofeedback yet, and I know that even after we've finished working with the computer I have the potential to get better at relaxing. Just like other things in my life, this is going to be another shared journey.