Fibromyalgia and dance, plus notes on E-stim.

All right. This is a story I have long put off telling, not through reticence but time. I was asked, by Mardy, to tell about what I had discovered about my own fibromyalgia and what has worked for me. Firstly, I was not very accepting of this problem, this "syndrome." I began my dance with chronic pain fairly young. Up until I was about sixteen, in fact, I was doing fairly well. Then I fell off the stage onto the back of my head. About the same time, I was struck in the jaw by a baseball. My sensior year I was in a rollover accident. Thus began my lightening headaches (that's what I called them). From that time forward, I suffered from these headaches, and my muscles were ridiculously tight. My friends who studied massage gave me massages, some of them going deep. I swore in beautiful colors sometimes, but hey, no pain, no gain, right??

Since this happened fairly young, I just learned to live with the pain. One chiropractor did adjustments and put me on enough Motrin to kill a horse. I was lucky my regular doctor caught that the rise in my normally low blood pressure might be related to this. Sooooo with no Motrin, my blood pressure came down but the pain came back. I was active anyway. Swimming and dancing and hiking all made me forget my muscle pain and headaches. After all, the headaches were intermittent and. As to the muscle stuff, I was ten-feet tall and bulletproof and muscle pain after working out was normal, wasn't it?

Over time, my headaches had increased, and finally, my mother gave a name to the headaches. Aha!! I had TMJ. Got that treated, had TENS, wore a splint. This did help some because I indeed had TMJ. However, my muscles were still like rocks. The headaches retreated for a time (thank you). As I got older though, the muscle pain got worse. When I was pregnant, I had hurt my back. Oh joy. More ick! However, it never got completely well, my muscles were still rocks (even more rocklike), and I was thoroughly convinced something was wrong. I didn't know what, just something.

I kept having doctors ask me this question, over and over, "are you depressed." To which I replied, "NO." I certainly didn't want to be, and although the pain sometimes was overwhelming, I was determined it was not going to win. However, chronic pain simply wears you out, and finally, after a job that ate my hands (carpal tunnel), and increased the pain in my neck, back, and you name it, I finally did have a bout of clinical depression. I took a short run of an antidepressant and got better. However, I still had pain, and I couldn't sleep. 

During that time, I also started to lose my parents--more stress!! However, about that same time, I finally got my doctor convinced that I actually might, officially, have this thing called fibromyalgia. She was not a specialist, but after figuring out that I did not have the usual suspects--rheumatoid arthritis or lupus--she gave me a diagnosis of "probable fibromyalgia" and gave me the standard treatment for it. Since there was no standardized treatment yet, and people were just acknowledging it as a real disorder, no-one knew what to do yet. Her answer was lots of muscle relaxants, Lodine (hoping not to raise my blood pressure), ridiculous amounts of Tylenol, and Mucinex. For some reason, this is something that has been found to help in some cases. And yes, it helped some in mine. 

Well, as my parents were walking out of this thing called life, I decided that I would begin bellydancing, yep, bellydancing. I had noticed that during my last job (transcribing doctor's reports) that my fibromyalgia had practically taken on a life of its own. The thing that stood out about the job, in my mind, was that it was massively sedentary. Also, every day when I finished the job, all I wanted to do was sleep. I was exhausted. For pete's sake!! I remembered that when I was dancing a lot (usually two or three nights a week--at least) and moving around a lot, the pain was significantly less. Also, at this time, my carpal tunnel came to crisis level and I could no longer transcribe. My time had some empty slots in it, and fighting workers comp was making me crazy! I really needed something to distract my worried mind, and I needed to reconnect with people.

As a musician, I had gotten to know a lot of belly dancers in my hometown, but most of the classes were on a night I couldn't go for lessons. Then, my friend, Caole, told me that there was a class on Monday nights and one of my favorite dancers was teaching it. Not only that, it was a style I resonated with--tribal fusion. Therefore, I went to a hafla (a dance party). They said anyone, using any style, could get up and dance at the hafla, so I did and had a blast. After that night, I signed up for dance, and it was amazing. I discovered, in a fairly short time, that I simply felt better after dancing--mentally and physically. For me, it really was like returning home. As one of the caretakers for my parents, it saved my sanity.

I want to make sure you all understand, however, that all this was not immediately apparent. I am fairly positive that if you have fibromyalgia, go to a tribal fusion class, and go home, you are probably going to think "that woman's crazy. I hurt. My arms burn when I try to hold them aloft, and things are aching, etc., etc.," and you will be right. What I discovered was that, over time, I was getting stronger and every single time I went home, I felt better for a time, and each time, feeling better lasted for a longer and longer period of time. Now, I still had flares (and still do), but, my stamina and my wellness had increased ten-fold. Most amazing was that lying in my bed one night, as I turned over, I heard these soft clicks from my back--all the way up my spine!! I realized, after it kept happening, it was my spine articulating! I couldn't believe it. My spine had been very unflexible, tight, and here it was articulating! Wow!

Then came another fabulous piece of help--and it came in the form of a fellow dancer. I was having a particularly bad flare but went to class anyway, knowing that the workout would improve the way I felt (if not physically that night--since I was in a flare--at least mentally). It was one of those nights (all of us sufferers know these nights:) when my whole body was painful. It was painful to stretch. It was painful to lie on the hard cement floor. However, I was there, determined, ready. Oh, did I mention I am stubborn? Anyway, one of my dance sisters noticed me grimacing and asked what was going on. I told her and she told me something amazing. She was a physical therapist working in a pain clinic, with a doctor who specialized in fibromyalgia! She told me there was a treatment called e-stim and, if I had the treatable form of fibromyalgia (resulting from trauma), I would probably benefit from the treatments. She also said they would know with the first one if I was going to respond. I figured what could it hurt? Even better, the treatment was covered by my insurance because it is an FDA-approved treatment. The treatment was called e-stim, or electrical stimulation, not to be confused with TENS treatments, which stimulate the muscle to contract. The e-stim treatments use a very low-level current, so low you don't really feel it--no muscle jumping. Yay!

So, after Dr. Hamner looked at my records, including an MRI that revealed a C5-6 disc bulge, and tested my triggerpoints (the part I dreaded the most), I went for treatments and, lo and behold, they worked. How could we tell you might ask? E-stim, as I understand it, stimulates the body at a cellular level, causing the cells the move out the neurotoxins poisoning the nerves. As it does this, it puts you in a "dorphing" state. You often feel dizzy and need to drink a lot of water to help the body flush the system. You can even get a little diarrhea, but only if it works. Boy, did I wind up in a dorphing state that evening. The funniest part was I had dance class that night. I got there and we started doing this cool circle dance. It was a very fast dance, with turns, and I was so dizzy that I felt like bobble-head doll trying to do the tango. I actually didn't know that the treatment was the cause, however, until my PT explained it to me.

That, my friends and fellow sufferers, was when the light went on. I was in a "dorphing" state. In other words, the e-stim had stimulated release of endorphins, only on a massive scale. And what, pray tell, did dancing do? Why, it released endorphins! I was ecstatic. No wonder I had always felt so good after dancing. Remember, I started with pain that had only increased over time, starting at the ripe old age of sixteen. I knew back then that I felt best when in motion. I danced my way through the seventies and eighties (sometimes just in clubs, sometimes on stage).  It was only really in the nineties and into the new millenium that I had slowed down, going the slowest at the end of my old job. In dancing, I had discovered the adrenaline rush that produced endorphins and also, unknown to me, kicked out the neurotoxins poisoning my muscles. Wow! Who knew?

Well, the upshot of things was that I took several months of e-stim, my doctor adjusted my medications to include a fibromyalgia drug (a new one, couldn't use either Lyrica or Neurontin) called Savella, which helped. She continued me on Mucinex (as I said, I still don't know why it works, it just does) and some of the others (still need some muscle relaxant and my friend Tylenol, but no NSAIDs). Very occasionally, I take something for breakthrough pain, but almost everything I am on is at a much lower level. You see, before dance and e-stim, I was simply in pain. All the pills in the world wouldn't make my pain ease up enough to really be able to enjoy my life. Now, I am enjoying my life.

By the way, I also discovered that whenever I was performing, whether singing or dancing, I felt better--aha, endorphins. Realizing this connection with endorphin production and reduction of pain was like getting a sign from heaven, and I encourage anyone who has this thing, this fibromyalgia, to consider getting involved in something like bellydance. Now, ymay think that any old gym class will do the trick, but I can testify this is not true. Before bellydance, I had tried CURVES and got into a gym, doing weight training. The resulting pain in my shoulders was very discouraging. I found that, although the aerobic part was fine, the lifting made my shoulder muscles into little rocks that hurt. Bellydance, on the other hand, involved only isometrics, muscle contracting against muscle. Through it, my core grew stronger. My arms grew stronger, along with my legs, and my stamina increased. This to me is amazing and has affected all of my life. When I go rockhounding, I am not completely played out at the end.

Then I got scientific confirmation that something profound had happened to my fifty-three-year-old, pudgy body. Let me tell you about it. Since before my son was born, I have suffered with back pain. My legs would go numb sometimes. Remember, I mentioned an injury that happened during pregnancy? I was working in the laundry, twisted wrong, and bam, I popped something major in my back and/or hip. It was my eighth month. The next day, I had no feeling in that leg from the hip down. No x-rays were possible, but I was done with working for awhile (obviously). It took me a year to be able to walk normally, to bend over, and I would still get an aching pain on that side--sometimes numbness. That pain and numbness has been with me off and on ever since--thirty years now. Then, some years ago, I had an x-ray done of my back and hips to make sure there was nothing going on in the bony tissue. At that point, there was what looked like a subluxation of my disk in my lumbar region. "Goody, goody gumdrops," I thought,"just wait until THAT gets worse."

Since I still suffer from this from time to time, Dr. Hamner (pain doc), decided to do an MRI of the lower back, to see if there was any spinal abnormalities down there that might need to be treated with a spinal injection. To her surprise, and mine, there was nothing. In fact, she requested to see the MRI because there was so much of nothing. She said that in her years of being a doctor (as I remember) she had never seen such a perfectly "clean" back. Once again, the lightbulb went on, as I remembered the sound of my spine articulating--such a strange sound, and sensation. I believe, truly believe, that bellydance somehow fixed that subluxation. From the beginning of class, I had noticed that if I were to use correct bellydance stance when walking or waiting in line, I had less pain. I could stand longer, in general. Again, amazing!

It sounds like I believe this is the end-all and be-all to everything. All I can really tell you is that I have an MRI that astonished the doctors and amazed me. I now know, at least, that I don't need shots in my spine (that was why we looked) and the numbness I sometimes get is NOT do to a spinal deterioration. Hooray!! No, it's just old fibromyalgia, combined with a family tendency toward a duck back, that is the issue, which is something withinn my power to improve.

As I end this note, I want to say to all of you out there suffering from this thing, this fibromyalgia, to find out if your style of this syndrome responds to endorphins. If so, then find something that increases them naturally. Also, if you can afford it (or your insurance pays for it) try some e-stim. The thing it did for me was cause my body to put out more endorphins than I could get in one night of dancing, at a time when my physical body was incapable of the rate of activity it would take to cause production of endorphins enough to get me onto a level playing field. The beauty of the treatment is that it is designed to go away. You start off at twice a week for a certain amount of time. As you get better and stay that way longer, the treatment is reduced until you get a treatment only when you really need it. I think of it as a tune-up:) However, I doubt I will ever need the massive amount I started with ever again, especially since I have stayed in bellydance (and probably will start swimming again--yay!!).

I leave you all with this knowledge. I have done this and I am not young or skinny (not even close). I have bad knees and carpal tunnel (by the way, bellydancing helps with carpal because of the wrist floreos!). It was work for me to do this. I am far and away the biggest gal in our group, and it is hard for someone with a pudgy little belly to take it out in public, but if I can do these things, you can too. I believe in you, whoever you are, whereever you are. And it is not only the dance that has been so amazing for me, it is the women I dance with--my dance sisters. They are beautifully kind and encouraging. I remember going to the gym and feeling so out of place (not to mention having the muscle rocks), so "not them. However, in my tribe, I am welcome and I am loved. We celebrate the dance and each other, and for me, it makes me well. This I hope for all of you.