One of my favorite Wellness resources starts off with the step "Remember what you know." So much of making positive changes is not about learning something new, but remembering and applying knowledge you already have, often by overcoming the inertia or other obstacles that have arisen around patterns of behavior. Until I had a child, I never had to diet to keep to a sensible weight, nor did I own a car until I was 34 so I was in reasonable shape just form walking and biking, even after I stopped playing sports like volleyball or softball in college.
After last two weeks of truly heroic holiday feasting (Spanish food is so good!) I was--am-- more than ready to make some changes. I crave salads, greens, vegetables, and feel no appetite for sweets. My new year's resolve to try new recipes and start dancing again are a good start to getting back into my previous good eating habits. From experience, I know that I have to find a new set of habits to latch on to so I don't drift back into bad habits.
The U is on a big Wellness campaign, and has provided some serious incentives this year: if you accumulate 300 points by carrying out a set of wellness activities from their offerings, you can get $300 of your health care plan costs next year.
Comparing my responses to the annual Wellness survey, from over the past few years, I see I have done better at managing the symptoms of my depression AND my back pain. But I have gained weight and become more sedentary, and I don't like having a menopot. I'm also having a recurrence of the frozen shoulder on the left side, so I need to do some active pain management: this was an incentive to sign up for the phone health coach, and I know that exercise (the right kind) will be key.
My two downfalls, ever since I started taking anti-depressants, have been nervous impulse eating, especially right before bed, and portion control. I also eat too fast. So, remember what I know: don't skip breakfast; protein with every meal; no refined carbs or empty sugar (no pastries or alcohol); five small meals a day works better for me than three big ones. In fact, I know that if I plan my food buying, prepare food on Sunday, pack my Mr. Bento, and record my eating for a month or two, I'll be back on track. I also know that returning to my former level of physical activity is possible, but I'll have to take is slowly to not go into a fibro flare.
The "MyFitnessPal" app gives me a way to record what I'm eating and get fairly quick calorie/nutritional information because it draws on a huge database of both commercial products and home-made recipes entered by users. I set a weight goal, get a calorie threshold that will allow me to lose weight slowly and steadily, and then record what I eat and my exercise; it shows me the calorie readouts combining calories eaten and calories burned, and makes predictions as to what I will weigh if keep up with a given day's pattern. So far, it has not been hard to use, either on my phone or on my laptop, and it was free. I want to see how well I can do with this for the Spring semester.
It also warned me on the first day that I was eating too few calories, which might prompt my body to go into "starvation"mode and defeat the slow weight loss purpose. I want to become more fit, not lose weight fast. So I could have had that second piece of 12-grain toast with peanut butter for breakfast, and still kept to my calorie goal.
Paying attention to health eating goes very well with saving money (don't eat out or sit around in coffee shops), so I get to pat myself on the back.
About 3 month agos, I discovered that I was severely deficient in Vitamin D. I had gone in to see my back doctor because my chronic pain and fatigue symptoms of fibromyalgia had gotten worse, and I had new pain associated with back problems. The doctor ordered some blood work to rule out rheumatoid arthritis (which a family member has) and a few other things. The results were surprising.
One of the blood tests they did is called VITAMIN D, 25-OH. What one hopes to see is a blood level within the standard range: 30 - 80 ng/mL (Over 80 can be toxic).
My results? 19 ng/mL, or "severe deficiency." No wonder I felt like crap! I have no idea how long I have been this way.
My primary care doctor put me on a regimen of megadoses, once a week for 12 weeks, to replenish the supply in my body. Since Vitamin D is a fat-soluble vitamin, it is not enough to just take a daily dose in order to recover; one has to build up the stores in the body. This is why you should get your blood tested to find out what your levels are, rather than just popping supplements. In addition, you can get too much Vitamin D, and this can cause significant problems.
After the 12 weekly doses, I was retested, and my level is now up to 40 (yay!) but I'll need to continue to take daily supplements, because even sun exposure and drinking milk are not enough at these northern latitudes.
One thing I noticed after four weeks of treatment was that I started to remember my dreams, to the point where I wondered if I was metabolizing my anti-depressants differently (they suppress my dream memory). I also noticed a huge improvement in my digestion and regularity (ahem), a major life improvement. Most significant is a noticeable improvement in levels of daily pain, fatigue and inability to focus. The more I read about recent research on Vitamin D's role in metabolism, the more I believe that everyone can benefit from finding out what their levels are, just as we do for cholesterol, iron, or other important metabolic factors. Research is showing links between adequate Vitamin D levels and protection against skin cancer, Crohn's disease, colon cancer, autoimmune disorders such as rheumatoid arthritis, and other conditions.
My mother, who is recovering from chemotherapy, has been having excellent results from her treatment, but also was tested and discovered she was Vitamin D deficient. I'm hoping her treatment will also mean less fatigue and pain for her.
May 12 is National Fibromyalgia Awareness Day, as sponsored by the National Fibromyalgia Association. The NFA is a non-profit founded in 1997 by people with fibromyalgia who were concerned with the lag in education and attention to the needs of people with fibromyalgia (affecting from 2-5% of U.S. population, during working years, more female than male).
Over the next 12 days, I'm going to post about my experience with fibromyalgia, and about resources, research and changes in our understanding of fibromyalgia. While this video is long, it is the best resource I have found about the science behind new understandings of fibromyalgia. Chief of Pain Management at Stanford, Dr. Sean Mackey, explains recent discoveries in research into pain, new ideas about central nervous system disease, and how they are related to fibromyalgia. The theory is that there is a disorder or disregulation in the Central Nervous System (CNS) that alters the perception and experience of pain. While the video is long, it's also extremely clear, thorough, and compassionate. It extends and connects what I have been learning over the years. If you know someone with fibromyalgia, you should watch this.
I've made some notes from the video.
Fibromyalgia (FM) is widespread pain, and hyper-sensitivity to pain. It is bow believed to have a wide variety of causes: some hereditary component with specific genetic mutations that may pre-dispose us, probably affecting a specific enzyme; environmental factors such as physical trauma, virus, emotional trauma, anything that can cause"an insult to the person" and seems to kick off the response and feedback cycle that alters the body, specifically the Central Nervous System (CNS) and transmitters called glutamate and Substance P.
What is pain? According to the International Association for the Study of Pain (IASP), pain is not just a stimulus-response mechanism; it is an experience.
Pain: An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.
Pain works by excitation and inhibition. If you have either too much of one or too little of the other, you have pain. If you have too much information coming into the brain, it leads to the experience of pain. Some fMRI imaging seems to back up this idea.
"Each person owns their own pain" Nociception=the chemical signals that occur when we have injury or trauma. But a group of people who receive the same stimuli will not report the same pain scores. There is a component that is not measured by the stimulus itself.
There are some medications that treat the pain "insult" or causes, but this still leaves lots of people suffering from pain. Pain is now being understood as a disease in and of its own right that causes changes to the nervous system, that stay there after the original injury or insult is gone and the tissue has healed.
Stimulus-- burn, injury--affects nociceptors (pain receptor cells) which act as transducers by converting one form of energy such as heat or pressure, into another form of energy-- action potential--that then transmits a signal along nerve pathways.
There is fast pain and slow pain. The A-delta fibers are fast-conducting and provoke a withdrawal response. The C-delta fibers send a signal more slowly, and are what last longer and hurt more, as a way of getting us to pay attention and take care of the pain.
Nerve signals reach the thalamus which acts a relay station and sends the pain signals to two major areas of the brain. The outer area of the brain is where we perceive the sensory aspects of the pain: intensity, duration, etc. The other section of the brain is the limbic forebrain, part of our reptile brain, where we experience the emotional part of pain, the experience of pain. We are actually more wired for this emotional aspect of pain.
The system that sends inhibitory signals back down from the brain seems to be what gets screwed up in fibromyalgia. Same part of the brain that processes negative emotions resonates with the experience of pain. Negative emotions are linked to discomfort physiologically, and scientist are documenting actual visible changes in the brain among people with FM.
Neuroplasticity is the concept that the brain continues to change and adapt. Research using fMRI is exploring the enhanced sensitivy to pain in the brain, or pain amplification, that seems to be characterize fibromyalgia. Unlike other diseases such as rheumatoid arthritis or carpal tunnel syndrome, with FM, it is not tissue damage or inflamation that causes the pain, but rather an abnormal processing of pain signals. This is why taking aspirin or other pain medications don't help relieve the pain for FM.
SLEEP: he talks about the sleep connection: "Alpha-wave intrusion," which interferes with the deep sleep cycle, is something I have. Again, research is documenting the correlation of sleep cycles and pain responses.
MOOD DISORDERS: actually occur at a lower rate among people with FM.
Oooh! oooh! he talks about the hippocampus!! you have to treat both the pain and the depression, in people where both FM and depression are present, for there to be improvement in each. Education and awareness, validation, lead to significant improvement.
FM needs to be diagnosed and treated with a holistic, integrated approach, using tools from a wide variety of systems and traditions. There exists now a mucher wider array of medications that can help than there were only 10 years ago.
I was originally given a low dose of elavil (a tri-cyclic antidepressant) which helped with the sleep and pain, but left me stupid and unable to work. I have tried Celexa, but the side effects were also unacceptable. Now I take Cymbalta, and the side effects are manageable. The medication gets me to a functional level with my pain; the pain does not disappear, but it is tolerable.
I do not take any opioids, although others I know do, because the docs are wary of the baggage and there are real, negative side-effects as well. Long term use of opioids can themselves over-stimulate the CNS and cause more pain instead of less.
Some anti-seizure meds have newly been approved from FM, but I haven't tried them either.
"Patient education" (ie: taking us seriously and helping us understand what is going on with our bodies and how to manage our symptoms) is key in providing relief. Mild (MILD) aerobic exercise, helps, but it is important to not overdo it. Fibromyalgia patients do not get the "runners' high" from endorphins that healthy people get. We feel crappy after exercise. Or, rather, we feel crappier. But gentle stretching, breathing, and mild aerobic exercise do have overall positive effects if properly paced.
He talks about the other direction of pain signals: "Descending Noxious Inhibitory Control" (DNIC) means that when you cause pain in one part of the body, (stomp on the foot) you feel less pain in another (your shoulder). Or at least this is the case with healthier people. but FM people just feel more pain, in both parts. So they think there is something out of whack with the inhibitory (descending) signals, from the brain and spinal cord, back out.
Cognitive behavior therapy (CBT) can help, with practice and guidance from skilled practitioners because it helps with awareness and changing habits.
McKay and and his colleague J. Younger study the therapeutic use of low doses of naltrexone (LDN), an opioid blocker, for FM. In a low dose it has an impact on microglial cells (clean-up cells that can get overactive in autoimmune disease states). Naltrexone shuts down narcotic receptors, and is used to treat alcohol and opioid addiction at a dose of 50 mgs. But at a lower dose, it blocks a specific receptors on the microglia, preventing the release of cytokines. So in a pilot study, at a dose of 4.5 mgs/day (10 times less than the regular dose), 7/10 of patients in the pilot trial vastly improved pain states and symptom relief. If it works, it will be very affordable. A larger trial is now underway. Note: the fact that this is a generic drug (meaning it will be cheap) means there is almost no drug company funding for research on it, unless it comes from non-profits or donors.
Apparently, LDN can have a therapeutic affect in a wide number of diseases, but its use is still awaiting FDA approval for many of those.
I found this meme over at the Chronic Babe forum, and even though I'm a month late, I wanted to do my own version. 30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: fibromyalgia 2. I was diagnosed with it in the year: 1992 (age 33) 3. But I had symptoms since: 1976 (age 17). 4. The biggest adjustment I’ve had to make is: accepting that it won't go away. 5. Most people assume: I'm healthy. 6. The hardest part about mornings are: all-over aches, stiffness, pain in joints and trigger points, brain fog. It takes about an hour of excercises and stretches in bed to be able to get up and get moving. 7. My favorite medical TV show is: House. 8. A gadget I couldn’t live without is: my laptop. 9. The hardest part about nights are: waking up at 4AM every day. I average about 5 hours of sleep, with medication. Sleep disturbance is a huge part of this syndrome. Yes, I've had a sleep study done. 10. Each day I take 4 pills & vitamins. (No comments, please) 11. Regarding alternative treatments I: wish I could afford to have shiatsu more often. It provide the most immediate relief. 12. If I had to choose between an invisible illness or visible I would choose: I refuse these "would you rather" questions! 13. Regarding working and career: I could be successful with a chronic illness, I could be a good mother with a chronic illness, but I have found that I cannot do it all, so career comes last. 14. People would be surprised to know: I'm in pain every day. 15. The hardest thing to accept about my new reality has been: in spite of my success in managing my symptoms, sometimes I will just hurt all over. 16. Something I never thought I could do with my illness that I did was: dance. 17. The commercials about my illness: at least mention the name in public. 18. Something I really miss doing since I was diagnosed is: I haven't stopped doing anything, but I have had to accept my limits. 19. It was really hard to have to give up: the idea of being a hot shot at my job. 20. A new hobby I have taken up since my diagnosis is: ballroom dance. 21. If I could have one day of feeling normal again I would: no trade-offs. I am what I am. 22. My illness has taught me: to have compassion for myself. 23. Want to know a secret? One thing people say that gets under my skin is: "you look tired!" Do I tell you you look like crap? 24. But I love it when people: acknowledge that I might need help without me having to ask for it. 25. My favorite motto, scripture, quote that gets me through tough times is: "all will be well." 26. When someone is diagnosed I’d like to tell them: "you CAN feel better." 27. Something that has surprised me about living with an illness is: how many people do so without letting on. 28. The nicest thing someone did for me when I wasn’t feeling well was: drive my daughter to school when I broke my foot. 29. I’m involved with Invisible Illness Week because: well, I found out about it too late, but I want to connect with folks. 30. The fact that you read this list makes me feel: OK!
Better late than never: Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
The first time I went to a bodyworker for something other than Swedish-style massage was when I was writing my dissertation. I had been experiencing the symptoms of fibromyalgia for ten years, but in my visits to a variety of doctors I had been treated with bafflement, indifference, sexual harrasment, and a few frank admissions that they could find nothing wrong with me. I gave up on the doctors. Although something in me knew that my condition was not just a psychological disorder was causing the physical pain, the stress of doing a PhD is a highly competitive and emotionally unsuportive environment, the toll of family woes, my "type A" personality, all were certainly aggravating factors. At a certain point, I didn't care what the cause was, I was just hoping for some relief. I don't even remember how I found her, but I started going to see a woman named Dorothea who lived in north Berkeley, close to the border with Albany. It took about 45 minutes to walk to her house--a time in which I could simply move and breathe and pay attention to the flowers--and when I got there, I was treated with gentleness, respect and kindness. That, in and of itself, was a balm. But she also had hands that knew how to find the sore points, and how to use pressure and stretching to bring some relief from the pain. She gave me suggestions for gentle exercises I could do myself to try to bring my body back to a sense of well-being, bit by bit. During weekly sessions with her, my writing imagination opened up and I began to work on my thesis with more joy.
I had a powerful experience during one of our sessions. I was lying on my back and she was working on one of my arms, holding it up but trying to get me to let it hang without helping her hold it up. "Just let go," she said. It was a surprise for me to even realize how hard it was for me to just let my arm hang in her supporting hand. As she worked, I felt what seemed to be a surge of electrical current flow through my body, as if I were a tuning fork, coming to vibrate in my chest and across my face. I exploded into sobs, as something inside released, physically and emotionally, or both. I was frightened at this new experience but also exhiliarated.
Dorothea didn't label this flow "chi" or try to explain what had happened; she just made room for it, and treated it as a natural and expected result of what we were doing. For me, it was wild, somewhat scary, but powerful. Whatever it was, it was a revelation that my body was carrying lots of feelings locked up in muscle memory, and that it might be possible to release them and let them flow.
Many years later, when I started going to the student clinic of a shiatsu school and learned more about the ideas behind Traditional Chinese Medicine and its influence on Japanese body practices, I had another framework for understanding this kind of experience. I had to stop getting shiatsu for several years because of the cost (it's not reimbursed by my health plan), but I just started again this weekend, with a session with a student. This time, I was ready for the releases, the pop of muscles letting go of their clampdown on my spine, and the flow of energy into unexpected channels.
This summer, I cleaned my entire house from top to bottom. I purged my closets, gave away clothes and shoes I didn't wear, books, objects that were stashed in drawers and forgotten. I'm recycling, upcycling, rethinking my relationship to the objects in my life. I'm seeing a therapist again and looking into consulting a work coach, or at least becoming more mindful in my approach to work. I'm ready to do the work in my body and spirit to open up those places where old feelings are still locked up, contributing to the pain and drain of a worn-out adrenal system that has left me exhausted and hurting for way too long. It may be true that there is a genetic predisposition for fibromyalgia (I'm not the only one in my family who has it); it is beginning to look as if a retrovirus may also be a trigger; the body's own feedback systems keep the whole cycle moving on its own: but I can't stop working if I want to live with less pain and more ease.
The Wikepedia entry on pain says "This article is about physical pain. For pain in a broader sense, see Suffering." For some reason, this makes me laugh.
Sally Cruikshank animated this bit for Sesame Street--I love it!
Years ago, I noticed that when a big weather front came through, I'd stop sleeping. Later, I paid attention and recognized that when there was a dramatic change in the weather, such as the one we're having now--when the first wintery cold front and rain moves in-- I'd have an increase in fatigue, pain, and other fibromyalgia symptoms. Poking around, I've found that there is research that shows that many people with arthritic conditions, depression or migraine also feel these changes. It's not clear if it is a specific weather factor, such as the drop in barometric pressure, or the change itself, as some who study migraines believe, that triggers the increase in pain, but the correlations are unmistakable. Over the years, I've come to recognize those times of the year and weather conditions that trigger the worst flares, and the beginning of the heating season in MN, my body goes kablooie.
For the last several days, I've been a hurting individual: to the usual stiffness, joint aches, tight muscle bands, the flare has added stabbing pains: it feels as if someone stabbed me with an ice-pick behind my eye, another in front of my ear, and another at the base of my skull, burning pains down my back to under my shoulder-blade, to that the spot I named H.A.L.; throbbing pains --pressure behind my eye and ear on the right side. My right ear feels itchy and hot, there are knots of pain where my lymph nodes lie under my jaw. The back pain is almost unnoticeable through the intensity, the electric shooting pains in my hands and feet feel 'normal.'
Monday it got so I had to focus just to speak clearly. Grading papers, writing for a deadline, and peering at the computer all made it worse. I am so used to sucking it up that I plow on until I feel as if I'm going to collapse. I can do things like let the dishes pile up, stay in bed later or slow down at work (I even canceled classes one day) but when the weather is moving through, I just have to hunker down and wait it out.
Today I'm feeling the shadows of my brain chemistry's particular quirks with a heavy heart. Some rhythm helps me lose the fear of those shadows. David Byrne. I'm so glad I got to see him perform three times with the Talking Heads in their various incarnations. Lyrics here, but I have to admit that I heard "The TV's in repair" as "the TV's in the bed." I'm fascinated by his descriptions of the process of creating these songs, collaborations with other musicians and arrangers, photographers and artists. He ends with this:
When I first started to make music sketches for what would turn out to be this record, I imagined the result would be something a little different. I imagined longer instrumental pieces, which would evolve into songs. But as I kept writing (although a few of them ended up that way), most of the demos asked to be shorter and more and more concise. At times I felt like I needed to apologize for how accessible the songs were sounding. But then I realized that this is what they wanted to be. Like the song "The Revolution" implies, I somehow imagine that a real revolution is won by seduction, by winning over not just the mind, but the body and the senses as well. And that the sadness of some of these melodies are countered by the vigor and persistence of the groove.
Despite the fact that so many things are going well right now (grades turned in, having fun planting flowers and kitchen herbs, thoroughly enjoying my new media set-up and connecting with people online), I've been having a very hard time with my health recently. I ran out of one of my medications and had to manage without it for about a week, I saw an immediate increase in my overall pain levels and fatigue, my hay fever symptoms are dragging me down, and menopause has meant some minor but really annoying digestive changes. Worst of all was the inability to focus, a loss of short-term memory, dizziness and confusion. I kept dropping things, saying the wrong words, forgetting important appointments. It was scary. I had to ask someone to get something heavy down off a high place in a store, something I would have been able to do without a second thought just a week earlier. I was afraid I would drop it as I have been fumbling and dropping everything else.
I continue to struggle with the idea that I am dependent on medications, even as I know that I need them. It's weird how much I've internalized the stigmas around addiction. I'm taking a medication that has legitimate uses for specific symptoms, (although I'm not self-medicating and exceeding my dosage!), but that is seen by many only through the lens of habituation and abuse. So in some ways I guess it's good that these last few days have been a sharp reminder of how miserable and uncomfortable my life can be if I don't manage my fibromyalgia symptoms aggressively, and that includes refilling my prescriptions with plenty of time to acomodate unexpected delays.
The incessant wind and dryness doesn't help--I get a static jolt every time I get out of the car, and I feel a kind of positive ion malaise. But summer means a slower pace. Life is good.
I learned by accident today that on March 7 there were demonstrations in European capitals to make visible the presence of people with fibromyalgia, a condition that is not yet universally recognized without stigma or skepticism, much as was the case with rheumatoid arthritis 30-40 years ago.
I just read about a new drug that has been approved for the management of fibromyalgia symptoms by the FDA; Savella(milnacipran) like Cymbalta, has an effect on both serotonin and norepinephrin reuptake (two neurotransmittors), and has been shown in clinical trial to provide significant relief for some people with fibromyalgia symptoms.
Like Cymbalta, milnacipran was first approved for treating depression and has already been marketed in Europe for that, but was seen to have beneficial effects in relieving fibro symptoms. Clinical trials now demonstrate that fibro symptom relief (pain, fatigue, quality of life) is significant for a large enough number of patients that the FDA has approved it specifically for treatment for fibromyalgia. Because the two drugs function in more or less the same manner, it's likely that they will not (should not) be taken together, but rather will function as alternatives to each other. It's important to remember that while a number of medications have been helpful for treating fibromyalgia symptoms to some degree, they are notoriously NOT helpful for all, and many have intolerable side effects. I first was prescribed a very low dose of amitryptalin (Elavil) many years ago. It led to some immediate improvement in my sleep disorder and pain levels. The down side was that it gave me hideous dry mouth and left me feeling stupid until noon every day. This clearly was not compatible with functioning at work, so I had to stop taking it. Cymbalta and Savella seem to be "cleaner" drugs in that they do not cause as many debilitating side effects, at least for some.
No drug is a magic bullet for fibromyalgia; both patient anecdotes and newer research show that an approach that combines attention to nutrition, gentle aerobic exercise, stress reduction and cognitive therapy give the best results long term. What medications can do is provide enough relief so that these behavioral strategies can even be started. They can be the difference for some people between living on disability and managing the symptoms well enough to continue to work. It turns out that there seems to be some delay in Savella's availability due to a complaint about the integrity of the trials. Knowing what I know about how clinical trails are conducted and managed in this country, I want to take a wait-and-see approach before getting all excited about this news. Unfortunately, the money the drug companies are spending on promoting and marketing these potentially very lucrative drugs is not just questionable because the drugs may not be as effective as claimed; the backlash to their shady tactics is actually causing some people to question the very existence of fibromyalgia as a syndrome. This pisses me off no end because even as more medical evidence is documenting the physiological abnormalities present with fibromyalgia, there is still a segment of the medical community and the press that talk about it as a "murky" condition, a "garbage can diagnosis" that is suspect precisely because it primarily affects women. Here is an article that breaks down these doubts point by point.
The first time I slipped on the ice this winter, it was one of those slow motion falls where you have enough time to think on the way down "I must look like one of those cartoon characters whose feet are scrambling "woah woah woah" before I landed flat on my back in the middle of the street. No big injury, but some very large and colorful bruises.
The second fall was much faster and completely unexpected because I didn't see the patch of black ice on an otherwise dry sidewalk. I only had time to emit a loud piercing shriek of surprise before I hit the ground. This time, the only injury was to my pride: what as that noise I made? Number three was when I was trying to pick my way down a steep icy path in a dog park where the steps were slick with ice from all the other people who had walked there. I foolishly broke my fall backwards using my hands, which jarred my wrists hard, but luckily nothing broke. My fear with winter ice falls is the broken elbow or wrist that leaves you unable to type with both hands. A few scrapes, but nothing serious. Last night, I was stepping over the crusty little snow hill between the street and the curb and onto a sidewalk that looked as if it was completely clear of snow and ice, because the warm weather had melted so much snow. But there was a thin layer of black ice where the snow melt had refrozen and was invisible, and one leg shot out to the side and back, and I came down in a very deep lunge. The fact that I was wearing a heavy backpack meant I had a little less control, but I didn't hit the ground. Unfortunately, the bent leg is the one for which I'd been having physical therapy for a pulled groin muscle, and although I didn't re-injure it completely, I am now having a lot of pain again. Dagnabit. I am normally not a winter whiner, and I wear good winter boots, but this stinks. I can't walk very well this morning, so I have canceled class, office hours and a meeting to ice, rest, take some aspirin, and see the doctor. Still, I grateful nothing is broken, because I now know of four people who have suffered broken bones from falls in the last few months, some of them requiring surgery. I am taking calcium supplements religiously.
Fibromyalgia amplifies the pain response, so I know I will have a flare-up in the next few days. I'm hoping to keep it to a minimum.
Blas saw an article in the Zaragoza newspaper El Heraldo de Aragón about a new treatment involving "transcranial magnetic stimulations" or TMS for people with fibromyalgia. Apparently, this treatment has been approved in Europe and is now being used in a few cities in Spain. It appears to have a huge success in alleviating the symptoms of pain and fatigue that afflict those of us with fibromyalgia, not permanently, but for significant periods of time and without side effects. I had never heard of this before, so I started digging.
First, I found this recent summary of how FM is being currently understood by the medical profession in the abstract of this article in the Oct 2008 issue of The Neuroscientist: "Fibromyalgia: A Disorder of the Brian?" Scientists have finally succeeded in using brain imaging techniques to detect specific differences in the brain images of people with FM and those without: "Fibromyalgia can no longer be called the 'Invisible' Syndrome":
"The researchers confirmed that patients with the syndrome exhibited brain perfusion abnormalities in comparison to the healthy subjects. Further, these abnormalities were found to be directly correlated with the severity of the disease. An increase in perfusion (hyperperfusion) was found in that region of the brain known to discriminate pain intensity, and a decrease (hypoperfusion) was found within those areas thought to be involved in emotional responses to pain.
In the past, some researchers have thought that the pain reported by fibromyalgia patients was the result of depression rather than symptoms of a disorder. "Interestingly, we found that these functional abnormalities were independent of anxiety and depression status," Guedj said."
This is important because for decades, people with FM have been treated as hysterics, malingerers, attention-seeking neurotics. For years, people with FM were angry and defensive that their symptoms were being dismissed as "all in your head," meaning "not real." This has changed somewhat, but I am still stymied by the fact that when I have a flare-up and must cut down on my work, I can't expect my colleagues or students to understand what is wrong or how they can support me.
Various types of TMS are now being studied for their usefulness in treating depression, migraines, Parkinson's disease, bi-polar disorder, cravings for alcohol and cocaine, as well as chronic pain relief and therapy after brain injuries such as stroke. A 2006 study from the Mayo clinic by Dr. Shirlene Sampson, et al, on a few patients pointed to the potential benefit of of repetitive cycles of TMS (rTMS) for relief of the chronic pain of fibromyalgia. Results of a larger 2007 French study on rTMS and fibromyalgia (published in the journal Brain) were based on an increased sample size and more systematic review of data. (Full text here). The blog Neuromod reviewed this study within the context of this emerging field called "neuromodulation." One of its major journals is the year-old Brain Stimulation (I love these journal names!).
Another study reviews some of these early research trials, and I've found calls for clinical trials specific to the use of rTMS for fibromyalgia that are being conducted now in the U.S.and France. Researchers are also now trying to find out how to refine their techniques of rTMS (where to apply it, what it seems to affect, etc). One hypothesis is that this treatment alleviates pain in people with FM because it reduces sleep disruption (maybe by correcting the alpha-wave disruption of delta waves in sleep cycles).
I've looked at some of the discussions of whether or not these non-invasive, non-convulsive, less expensive (but still experimental) treatments are as effective as ElectroConvulsive Treatment (ECT) or "electroshock therapy" (which still horrifies me because of past abuses, although I realize that for some people with severe depression that is resistant to all other treatments, it can be more effective than medications).
It is surprisingly difficult to find out who specializes in treating fibromyalgia in this area; in spite of the fact that I have a very sympathetic and competent doctor who has been great for me for the past fifteen years, my symptoms have been worse these past few years and the overall degradation of my quality of life is taking its toll on my resilience. I'm going to keep chipping away at finding more about new treatments and access to them in this area.
The insurance company turned down my application for long-term care insurance because of pre-existing medical conditions, even though I disclosed them when I applied. I'm not sure if that is legal, but that's a subject for further research.
Wellness is much more than simply the absence of sickness. It is optimal physical, mental, and emotional well-being, a preventive way of living that reduces—sometimes even eliminates—the need for remedies. Wellness emphasizes personal responsibility for making the life-style choices and self-care decisions that will improve the quality of your life. One crucial tenet is that preventing illness is even more important than treating it, especially since many chronic diseases are incurable.
Wellness is a positive, day-to-day approach to a long, healthful, active life. It includes both highly scientific and practical medicine—from the latest research and most advanced tests to reliable home remedies and common sense.
For me, wellness cannot be understood as the absence of sickness, because I have lived with the symptoms of two chronic illnesses -fibromyalgia and chronic depression--for most of my adult life. Cheri Register's book The Chronic Illness Experience: Embracing the Imperfect Life is the best book I know about the challenges of coming to recognize that these conditions will never go away, and that I must find ways to live well. I am fortunate that I am able to work (although not at the capacity I would like) and be physically active (although not always, and not always the way I'd wish), and that I am not now disabled.
For years, before I was correctly diagnosed (in my mid thirties) I was told there was nothing wrong with me (the implication being that it was all in my head) but I kept trying to "get better" because I was suffering. I believed, because I had been told by so many doctors, that all I needed to do was eat right, exercise, and have the right attitude, and I would be able to somehow achieve wellness, understood as the absence of disease. I also believed that if I was not successful at "getting better", it was because I was doing it wrong, or had character defects of some kind: I was a Type-A personality, a perfectionist, "too angry", the adult child of an alcoholic, hysterical, another one of those women. It turns out that research has shown that these are myths.
Correct diagnosis and a holistic treatment plan have made it possible for me to manage my symptoms better. The idea of wellness as a daily practice helps me think about my "chronic illness experience" as part of me, rather than something that has happened to me. I'm not through mourning the loss of the person I thought I was going to be, but I embrace my imperfect life.
A THIRD weekend of thunderstorms, hail, worries about tornadoes and severe weather. I spent about an hour in the computer repair place because they had issued a SEVERE WEATHER WARNING, telling us to take shelter immediately, and to see if I could get my laptop back. Yes, it works now that the motherboard/logic board has been replaced, along with the cracked top of the case (do you think we used it too much?). The repair guy said there was nothing we did that broke it, but I need more memory.
I spent the day in an event called "Democracy Day" as a prelude to the National Media Reform Conference that starts tomorrow. It was a gathering of folks working on election reform, and I learned a lot. More about that later when I have time and energy: all the thunderstorms moving through really have an effect on my fibromyalgia symptoms. Instead of going to the big party tonight, I gave my tickets away and went home, and I'm glad I did. Sudden drops in barometric pressure have been anecdotally reported by people with fibro, and some studies confirm that this is the case. Besides, SYTYCD was going to reveal the top 20!
This is what they pretend to do on "House": diagnose tricky diseases, but without the sex and snarky jokes.
I was surprise to learn that there have been some significant changes in the understanding of fibromyalgia in terms of the use of "tender points" as part of the diagnosis; apparently, there is more recognition that fibromyalgia pain can occur in many other sites, and in response to a variety of stimuli (odors, lights, loud noises) that there is quite likely a Central Nervous System disregulation in the processing of pain and other stimuli. Researchers are finally starting to listen to patients, accumulate enough data and anecdotes, and see more patterns. Another new idea is that fibromyalgia may be more common in men than previously believed, because there was an overemphasis on a specific "tender points" exam.
One doctor shows where the tender points are. Another talks about conditions that need to be ruled out, such as various inflammatory diseases like lupos or rheumatoid arthritis, hypothyroidism. Sleep deprivation, depression, and other issues are discussed.
This discussion may be too dry and technical for most people, but for those of us with chronic pain disorders in general and fibromyalgia in particular, this is a fascinating and very useful discussion, especially because it shows what doctors SHOULD be doing to help us understand what fibromyalgia is and is not. Part One and Part Two. Part Two deals with the "psycho-social" environment and stressors that affect people with chronic pain; pay attention to the person, not just the pain. Since I got my diagnosis (about 16 years ago), the medical community has learned a tremendous amount, and there has been a shift to a more compassionate and clear-eyed view of fibromyalgia and chronic pain.
Good news: I can raise both arms over my head again, after a year and a half of physical therapy; the frozen shoulder and rotator cuff injuries are almost healed. But yesterday I started to get a fibromyaogia flare-up and it's really annoying me. This one is: migraine, tender/trigger points along the left side on my skull, jaw, neck, shoulder and back (ie: painful knots in muscles), inability to concetrate, irritability, bad digestion, sensitivity to all stimuli (light, touch, sound, cold) and fatigue, fatigue. Like having the flu after having been struck repeatedly with a stick. It's hard to talk about fibromyalgia because it's an invisible chronic illness. I tend to function fairly well in spite of the symptoms, so people assume I'm OK. And if I talk about the symptoms, I've often been seen as a whiner. Sometimes this makes me really mad. This song really gets to me for that reason, and the video text is a good summary of how I feel sometimes as well.
A somewhat less emotional take that shows a good discussion about fibro by two people who have made a documentary Living with Fibromyalgia. It gets to the hopeful side, and talks about how we manage. More women are affected than men, but I think some men have a harder time getting a diagnosis because they are supposed to ignore pain.
I"m too lazy to mess around with the template code to get the picture to line up in the header banner, but I decided to make a change.
Yesterday was my visit to the radiologist for the cortisone injection into the shoulder joint. Because I am allergic to iodides, and the tracing fluid has iodine in it, they decided to do the injection "by feel." They used the X-ray machine to locate the spot, drew an X, and then gave me a numbing agent. Then the doctor inserted the surgical needle. It hurt like hell, so he pulled it out and tried again. This time, he slipped it in the right spot, and pushed in the lidocaine and the meds. It's not a pleasant feeling, and they warned me that the joint capsule might hurt later because of the extra fluid, but we were all happy it seemed to work out, and that I didn't break out in hives or have an allergic attack.
I had to bring a driver, but I felt fine for the several hours afterward. Then the lidocaine wore off and I spent the rest of the evening in the most excruciating pain I have ever experienced in my life: worse than when I broke my foot, worse that the appendicitis, worse than childbirth (at least what I remember of it, because that memory of pain has faded, no doubt due to the intrathecal morphine I got at the end). I felt as if my entire arm and side were exploding with pain. No position made a difference. I could move it, but every move was agony. Since I had gone with some friends to see Sweeny Todd, I couldn't tell how much of my pain was physical and how much was psychic at having to watch Johnny Depp slit several throats in bloody close-up while singing about Joanna! Yikes. Talk about a nightmare. I love me some Tim Burton, but the throat-cutting was way beyond my gore tolerance level.
Once I got home, I called the after-hours nurse line to make sure that I wasn't having an allergic reaction (no problems breathing, no rash), took four aspirin and four sleeping pills and went to bed with an ice-pack. This morning, the agony is gone, it just hurts in a more normal way, as if I sprained something. They told me that I would have some discomfort, but they freakin' lied. They should have said, "Here, take this Vicodin, curl up in bed and be prepared for your entire right side to feel as if it is on fire." I'm still pissed that they didn't give me any pain-killers, but the worst is over. Now I have to see if the result is that I can increase my mobility by keeping up with my physical therapy routine. I refuse to think that this was a mistake, YET, but I have to wonder if he hit a nerve the first time he inserted the needle.
Arrgh! the last push of the semester is always such a challenge! Although I have read the rough draft of all thirty senior projects in the last two weeks, I must reread them because they are often quite improved. I also promised I'd write comments for those who want them, and this time most of them want them. Then I have to find a balance between my good wishes for the nice folks who finished their degrees and my irritation at those who made the same mistakes I exhorted them not to make, didn't follow instructions, or in some other way got up my nose. I've found that I can manage to read two or three in a row, and then I must do something else. This week that something else has been going to a daily health appointment, physical therapy, the orthopedist, etc, to see how far I've come with my shoulder recovery.
The good news is that I have much more range of motion and less pain. The bad news is I still only have about half my range of motion, and a lot of pain. It's definitely frozen shoulder, or adhesive capsulitis, and I am scheduled to have a second cortisone injection in a few days, this time into a part of the joint that is harder to reach, so I have to go to radiology and find someone to drive me home (probably due to anaesthesia). Because I showed such marked improvement after the first injection, I'm very hopeful that this one will also make my recovery faster. I'm trying hard not to get down about the slowness of the process, which is just the nature of the recovery for this particular problem. It has been almost a year and a half since I started having these shoulder problems, and I miss dancing, biking, and being able to move my arms without pain. But I also just spoke to may sister who has rheumatoid arthritis, and is facing the choice of taking a very toxic medication if she wants to be able to walk very well, so I'm comparatively fortunate. My hope is that the time between the semesters will give me a break from some of the stress of work so I can rest up.
Poking around on the internet, I've learned that frozen shoulder, as oppose to rotator cuff impingement which was my earlier diagnosis, affects primarily women between the ages of 40-60, is often associated with diabetes (but all my blood work is normal), and is often of unknown cause. Of course! But it's likely that contracture, in part aggravated by subscapular trigger points, is a big part of it. In other words, I suspect that the underlying condition that causes the symptoms of fibromyalgia is a contributor, since the trigger points seem to be the result of contractures in locations other than the shoulder joint.
My rotator cuff tendonitis coupled with my fibromyalgia has meant that this semester my normal levels of chronic pain have shot way up. It's bad when I just wake up--I spend about half an hour stretching gently in bed, and that helps, but the pain in my shoulder is acute, and doesn't respond to that. After five o'clock at night, I'm in agony. It's hard to be completely present to my child, continue working, or enjoy time with friends when you're in pain. Some things it hurts too much to do: tuck in my shirt in back, put deodorant on my left armpit, write on the blackboard, raise my right arm above shoulder height, carry things with my right hand or arm, put on and take off my clothes, doing dishes, carrying in groceries, carrying laundry downstairs, putting it in and out of the washer and dryer, getting dressed, wiping a counter. I'm turning fifty, not eighty, but my body feels old and crippled. I'm going to ask the guys to clean my house as my birthday present. Isn't that pathetic?
I have been seeing a physical therapist, and that has helped a little, but the screwed-up thing about constant pain is that it wears down your body and then it wears down your spirit. I'm starting to get to that well-known point where I am having difficulty coping on a daily level. The shoulder pain has meant that the usual exercise that I do to manage the fibromyalgia pain is out, and the fibromyalgia means that I am hyper-sensitive to the shoulder inflammation and slow to heal. I hate the fact that it is preventing me from keeping my house clean (vacuuming is probably the worst for fibro), and it even hurts to write on the blackboard in class. About once a day, I manage to move my arm is such a way that the shoulder joint pinches the muscles and tendons so hard, I want to cry.
The shoulder pain has become so bad this week that there are times when I can hardly bear it. Icing, pain relievers, the exercises my therapist has recommended, all are a small help, but the need to work so many hours in the last several weeks has me feeling as if I'm sliding back rather than making progress. I'm starting to lose brain function from lack of sleep: I blank out on words, my memory is shot, I react sluggishly. Most distressing is that this kind of pain and fatigue can also kick me into a mental space that I've worked hard to leave: cranky, paranoid, snappish. That's scary.
Then there's the fact that the shoulder pain interferes more with sleep, which causes the fibromyalgia to flare up, so that now I have returned to the state where I feel as if someones has been beating me with a stick--everything hurts, all over, but my hands, arms, shoulders, neck, face and upper back are either aching all the time, or feel as if they are laced with barbed wire.
Ironically enough, I'm actually very happy these days. That's the paradox of the physiology of pain-induced depression; I love what I'm doing at work, my family is wonderful, I wake up thankful for my good fortune. But the pain acts as a curtain that I have to push aside, separating me from myself. I'm familiar with this cycle. If something doesn't happen soon to improve the pain situation, I risk falling into the hole of exhaustion and the effects on mood that this brings.
I don't have many people I can talk to about this because frankly, who wants to hear about it? I suffer from the hyper-competent single mother complex as well: if I don't do it, nobody will. That's not actually true, but it's hard to let go of that mind-set.
Coping strategies for the day: hot bath, walk around the neighborhood to buy birthday presents, gentle stretches, ice shoulder, eat healthy food, breathe, leave work until tomorrow. Long term: see my doctor again, try to get back to twice a week with PT, mental health therapist, massage. All those things take time from work. So I will need to talk with my department chair to document my situation, not something I look forward to doing.
Good news: I got a paper accepted to a conference in Ireland! Bad news: I'm not sure how I'm going to be able to write it. /pity party>
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