A cause of fibromyalgia

FIBROMYALGIA, HOW COME?

My fibromyalgia has returned with the vengeance that only those who have known this beast can appreciate. For about a year I had about forgotten that I had been under the control of this fiend for three decades; the Cymbalta was working like a charm, I assumed that there is a silver bullet, I had found it. I wrote several posts about how peace had finally come to my universe, I stopped writing because it was repetitive, there was nothing new to say.

Recently the nasty one has slunk out of the woods and sank his fangs into all the parts of my body; the wounds seemed slight, reaction to a new exercise program, a hamstring that I must have overstretched or somehow damaged. As the pain grew worse I checked with the people at the Chronic Pain Clinic who couldn’t think of anything different to do other than perhaps increasing the amount of Cymbalta. The pain led to fatigue that led to excessive worry about my recent heart situation; and so I began a series of tests which showed almost nothing except for apnea, which is now being managed pretty well thank you. The future was to either crawl into my hole and feel sorry for myself, a procedure that is not unfamiliar; or make a different noise about what is going on with this attack. Messages were sent to various people in white coats over at the Great Hospital by The Lake, allusions to the Baron Münchhausen were included, dramatic appeals to look at this differently than before were made.

There will be a gap here because testing, hearing results, passing to the next specialist, retelling the old story—that part doesn’t need repeating to those of you who have learned it well.

I finally braced my internist to examine what is going on right now with an eye to a million dollars worth of testing or to go home and live with it. Out of the conversation was his observation that there can be a cyclical nature to bouts of FM, had I noticed that, had anything big happened just about the time of this latest flare? There didn’t seem to be anything until I threw out my last comment about a family situation that had made the holidays the most painful of my life, but that it wasn’t a new situation and certainly had no physical aspect. When did the latest bout of FM begin? When did it become severe? The answer to both coincided with another family anniversary that also connected to the Christmas situation.

That was a day ago, in the time since I have been able to remember other instances and other flaring of the FM. The instances where I never had the courage to admit the pain caused by the rejection of almost everything I hold important, these things were too big to be expressed and just had to be endured, my cross to bear.

Needless to say I think we are on to something here, I can feel that release of tension and return of the easiness of understanding that comes at times like this. It certainly isn’t over yet but the beast has a vulnerable area and my knife is pushing deeply.

The internist suggested that on this blog I ask others if they had circumstances that might be coincidental, trauma of various kinds, patterns of recurrences such as anniversaries or reaction to events; any difficult situations that were too painful to express fully.

If you respond to this know that I don’t want to know personal details that might embarrass or identify you, you can send me private responses if you wish. I will merely pass the information along to the white coated guy who sparked this, to see if we can find some way to help others. If I have missed any comments about confidential matters or professional guides please let me know; I ain’t in the medical profession, I am not interested in passing along or even knowing your private events, just if you had them and could they have preceded a flaring of fibromyalgia?

A Few Health Comments

A FEW HEALTH COMMENTS

A few minutes ago I searched this site for sleep apnea & cpap with few results; a couple of people complaining about having apnea, a technician explaining how sleep trials are done, a few people peddling whatever they can and are allowed. I am surprised by how few posts there are on this subject; I read this morning that 60% of diabetes sufferers probably have apnea as well; personal experience taught me that a good night’s sleep is essential in managing fibromyalgia; depression is influenced by fatigue from lack of sleep; most recently I found that heart failure, mine, probably is associated with apnea. Those are four big areas of health, I don’t know what these ailments cost but it has to be in the billions every year. There is the always present quality of life which cannot be measured so clearly.

This is what started me writing this post: I have had depression for the first sixty years of life; I had fibromyalgia for the last three decades; I am borderline diabetic; I was recently surprised by the onset of heart failure and a. fib.; recently came severe apnea.

My previous posts tell more than anyone would want to know about my depression and what I do to manage it. There are a few posts that describe how fibromyalgia is controlled with the help of the Chronic Pain Clinic at RIC; there are more posts on the heart business than can be of interest to anyone but myself; and now the apnea has been diagnosed and is being managed, 40 awakenings per hour are coming under control.

That all of these ailments and all of the managing methods are connected is obvious; that the sleep problems are common to all of them is known. In my happiness over the management of sleep problems I imagined that everyone in the world should be tested; a fantasy because not everyone wants to explore the ways that may make them feel better. It isn’t just men who avoid feeling right, there are a fair number of self-absorbed neurotic women who won’t search beyond their prejudices (herbals &c.).

I don’t expect anyone will change the way they handle their life because of my haranguing, and yet I do continue to nag every now and again. So many people might have better lives than they have if they had the courage to go at what is hurting them, spiritually, physically and psychologically.

I have known more than a few who have died through avoidance, died unnecessarily, and there will be so many more in the future. But damn it, I am not going to live a miserable life if I can help it.

Fibromyalgia, etc.

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In looking for a subject of a five-minute writing exercise I realized that it has been a while since I passed along how I am doing with my fibromyalgia; as I wrote previously I have had it for over three decades, could find no way to manage it and was suffering quite a bit when I heard about Lyrica which I tried for most of one year. The drunken side effects became too much and I got a physician’s order to go to the Pain Clinic at RIC; they immediately put me on Cymbalta even though the approval had not yet come through from FDA—it relieved my pain within two days of beginning. Along with the other therapies from the clinic I have been pretty much fibromyalgia free since the middle of last July. I almost forgot to list the side effects because I only have one, and I can live with it alright.

Not only does it help me manage the pain it is good for my mood; those of us who have fibromyalgia probably have depression lurking around the corner and paying the occasional visit. The double acting whatever it does has helped there as well; recently I was found to have heart failure and concurrent to that a major family problem, both are under control as much as is possible, my mood through all of this has been the vehicle that carried me. As with any illness more than half of it is a mind game, that is a condensation of my latest on the field action.

Cymbalta, Lyrica and fibromyalgia update

As I refilled my Rx for Cymbalta this morning I realized that I am in my third month with this stuff—-and no fibromyalgia yet.

Add to that: that my mood is good, anxiety is at the lowest level and there are no side effects so far. This stuff is doing a good job and I hope that it continues.

In full disclosure I will say that the days I don’t do my exercises I will begin to feel creaky which may be the precursor to fibromyalgia, or not. The mixed exercise program from the pain clinic has made me stronger, I’ve lost about a dozen pounds, and the severe pains from old injuries are gone.

One strange thing that has happened is the loss of my need to write about what is going on; perhaps the Lyrica was some kind of muse, perhaps the pain offered opportunity to scream and yell about my life, perhaps I am just going through a phase where the need to write is lessened—the causes of writer’s block are many and mysterious.

Lyrica, Cymbalta, Fibromyalgia

I have just returned from doing my cardio-fitness exercise, which for me is fast walking with a heart rate between 90 and 120 for 20+ minutes; I became a believer in this type of exercise when they reminded me that it produced endorphins and my pharmacist reminded me that endorphins hit the same nerve mechanisms as the juice of the poppy. It feels good and lasts for about 8 hours.

I have nothing much to report on Cymbalta, because the side effects are absent with the exception of the sexual business, no dizziness, no exhaustion; it does produce a bit of a high, but not too much of one. Having given the Lyrica about an 8 months try I feel that I was right in dismissing it for this stuff. Again, I have no idea how it affects anyone else, whether it is better for rheumatism/fibromyalgia for anyone else, I am just putting it down here for those who are following my journey.

Another aspect of pain management is what they call bio-feedback, what some might call mindfulness exercises involving breath control and the monitoring of pain and tension changes from the exercise. I have been doing this kind of thing for about a year and a half so didn’t need to be sold on its benefits.

Other specialized exercises and occupational therapy just make my body work in a more natural way, one that doesn’t hurt so much.

As for the psychology: reducing stress reduces pain, accepting what can’t be changed is a good habit, etc., etc.

My mechanic suffers from chronic leg pain from an old injury; I have been nagging, coaxing, showing him my progress, and I think he may actually try to do something. It is liking moving a house from its foundation.

As I wrote a few days ago, being open and looking beyond is the key to a great big future, but no one can do it for me except me.

There isn’t anything else to write than what I have put down so far, there is a smörgåsbord, so don’t be so picky, try a little of each.

Why write?

I have not felt the urge to put anything down here recently, for no reason in particular except that I have been focusing on the pain clinic and the variety of homework required. It is easy to be diverted from writing, there are always more reasons not to write than to sit here and figure out what the next word ought to be; there are hundreds of quotes from writers on just that, in the end there is the simple rule that writers write .

Taking medicine is the easiest part of handling pain and discomfort, to change the behaviors that have either caused the pain or have grown up to protect it is difficult. I haven’t done any exercise for my heart and vessels in a long long time, since I injured my knee; as a result I don’t have a lot of endurance, I become fatigued quickly. It was easy to blame the fatigue on Lyrica, but when Cymbalta caused the same problem I began to wonder. Reading the list of side effects for almost anything it is easy to find what I am looking for, someone has reported fatigue somewhere the line, and I seconded that effect.

There is a growing list and daily log of stretching and strengthening exercises that will protect me from injury and discomfort, these are new to me, and none of them is easy if I am doing them correctly. But I can feel the improvement, it feels pretty good.

The reason I was not writing was not the time that I devote to exercise, it is that I have to think in different ways, additional ways. I feel natural when thinking and writing about philosophy or theology, the nature of the religious experience, the agonies of existential being and becoming; all that stuff fits well into who I am. The business of taking care of this body has been neglected, and I paid the price of neglect; perhaps I can incorporate these two areas of who I am together. Writing this helps that happen.

Odds and Ends

I feel that there are a few items that I might comment upon that I have left hanging:

The first has to be the continuing comments about MagicJack; there have been a few complaints that were similar to my own, more about the way that these people conduct business than the nature of the product; then there have been a couple of really funny comments by people who work for the company, I hesitate to call them lackeys or lickspittles because I don’t know them other than through their abject admiration for the guy who is steamrolling the company. I wonder if they realize that anyone in the world can read their devotional messages to The Great Chief? I was hoping that the whole issue was behind me, but perhaps it has a ways to go yet.

On a positive note: For those who have been following my fibromyalgia (now re-labeled rheumatism by me) the decision to go and see my internist, to tell him that I wanted alternatives to what was not working, was a good one. He wrote the order that I have a consultation at the Chronic Pain Clinic as I have written previously; the first visit was an evaluation, the second was a series of meetings with the different specialties involved in pain management. I will be visiting the clinic once a week for up to five weeks.

The change in medicine to Cymbalta continues to give me back the energy and stability that I had lost when taking Lyrica; the side effects seem to be some acne and a definite absence of activity between my legs. That last thing would be of greater interest a decade or two or three previously, but I turn seventy this fall. I have had little or no knee and leg pain, my rheumatism has been at level 2 or less since beginning this stuff.

There will always be some degrees of pain and discomfort, no one is arguing that that will be the case; this management is to minimize what can be reduced, and to stop the remaining pain from being such a big part of my life. The biofeedback part is new to me although I have been doing breathing exercises as part of yoga, the feedback takes it a step or two beyond those simple exercises. There are a group of physical exercises which have made an improvement in how I feel in general, pain reduction in particular. So that’s pretty much how that is going.

Again, the big point was that I decided to request alternatives to what had stopped working; that is always the case, I hear too many bitching stories from people who are waiting for the people in the white coats to open the magic box and release the instant cure. There ain’t no instant cures except in children’s story books, the people in the white coats wait to hear when the patient wants something.

I write this in the midst of doing three loads of laundry, something I would have not had the energy to do at one time just a few weeks ago. A thunderstorm is roaring through, dropping a lot of water and thunderbolts; Bach’s piano and cello concertos are going on in the other room.

That’s it from Chicago this Friday morning.

Rheumatism

I don’t have the urge to write about anything momentous or heavy, as much as I enjoy doing that kind of thing; all I have today are comments about the new medication from the Chronic Pain Clinic.

This is the seventh day that I have been on Cymbalta, I took my last Lyrica on Friday evening; the doctor wants me to take 60 mg. each morning to see how it handles the rheumatism pain. Tomorrow I begin the half-day pain clinic sessions that may go on for up to five weeks; I don’t know what will go on there other than they told me to bring shorts and running shoes.

The Cymbalta seems to be handling the rheumatism pretty well, I don’t feel as creaky and tight as I had, the severe pain in my right knee and thigh is decreasing because I am exercising more, and better.

I drove a pain doctor, as passenger on Friday, who agreed that I should be calling whatever it is I have “rheumatism”, he said that I don’t fit the fibromyalgia profile which he described in sexist terms, he agreed that it was sexist but insisted that it was accurate; it confirmed my decision to have “rheumatism”. My pharmacist has been watching the “John Adams” series on HBO, he informed me that Adams also had rheumatism, for whatever that comparison is worth.

To be rid of the dizziness and fatigue is great, really great; I have yet to find out how much of this Medicare and Blue Cross will pay, so there may be a hammer ready to drop. This stuff ain’t approved across the board yet, so the insurance people are being reluctant.

As I said I don’t have much else going on today, just resting up after a long and tiring order on Saturday, but not a painful one as in the past; just charging my batteries on a cold and blustery spring day in Chicago.

My Lyrica Adventure is Ending

It looks as if I am approaching the end of my adventure with Lyrica, it is to be replaced by Cymbalta. I gave it a good try from early August of last year until now, it was effective at times, ineffective at others; but it is the side effects that make me happy to say goodbye to Lyrica. I have had several hundred people read of my experiences with Lyrica, a number of them have sent me messages; my overall impression is that it is the dizziness and fatigue that keep people away from this drug.

Cymbalta works differently than the Lyrica, it combines the effects of boosting two neurotransmitters, giving some kind of synergistic effect that relieves rheumatism/fibromyalgia pain. Anyone who is interested can find more information on the web. The side effects of Cymbalta may be minor nausea I am told, there may also be some dry mouth effect. I think it acts as two anti-depressants in one, although I don’t need anything for depression, that is how I remember their explanation, I really don’t care too much how, just if.

This is the first time I have been to a pain clinic; I was interviewed by a nurse, a physician and a shrink over a period of about three hours. Besides changing medication I will begin attending a pain clinic weekly; the clinic advises on how to handle pain, a cognitive approach. One thing that struck me about this morning is that all three people asked about abuse, had I been abused, have I ever abused another; I had some things from my childhood that they found noteworthy, what will become of that I don’t know right now.

It is good to feel the support of a team that treats only pain; I have made a more detailed description of my situation than I could ever have imagined, and they understood my nuances.

I gave Lyrica a good try, I will give Cymbalta an equally good try, I will attend these clinics and get out of them what I can. I certainly am not going to miss being dizzy and tired, perhaps my half a dozen naps a day will diminish. For those fibromyalgia sufferers who have read my stuff I will try to keep you up to date on what is happening with this new approach; it is about time that we have have several alternatives, that we have professionals who now understand and focus on what is going on. I always have hope, perhaps a little optimism is in order here as well.

Proof of spring

Buds have formed on the iris outside my window; I noticed their thickness as I went out to pick up the morning paper. I went without a jacket, just a shirt over my undershirt, jeans over my pajamas. The light air felt good and let me think that I might be able to open the windows again today; they were open yesterday for the first time since October, letting wind erase all that winter staleness. A previous tenant had been a smoker, something I didn’t know for about four months after I moved in; then the residue began to bleed through the paint, over the winter that fustiness was captured inside the apartment, a reminder of the decades when I smoked a pipe. Now it is gone, will be gone until next fall.

Relief of another kind came with my internist recommending that I go to the Pain Management Clinic of the Rehabilitation Institute , this option had been in the back of my mind for some months, but like many of us I had planned on taking a tablet three times a day and life will then be just right. This clinic employs the variety and combination that are available from a large teaching hospital, and they are not limited to old-line medical methods. Just knowing that I have an appointment, that a team will evaluate and suggest a plan for me is a relief in itself.

Just seeing the filling bud of the iris confirms that the hard winter is over, that a pleasant and warm time is ahead.

It would be good to have that feeling about friendship, about love, about the future; unlike spring, unlike better medical options there are human situations that have little or no promise, for those dull and lifeless futures I rely on that that I know cannot disappoint, that cannot be changed, that I found when I faced imminent death a decade ago. The knowledge and peace I experienced then will always be with me, was always there even when I was too obtuse to realize it. It is something that everyone has, that doesn’t come from outside, from another authority, from doing good acts or not; whenever I come across as a bit weird and preachy it is from this knowledge that transcends all religions and cults, has always done so.

I am as pleased as anyone to enjoy this change in seasons, as refreshed as the next person; but I am saying that it was something else that supplied happiness and truth during the long and cold winter, as it will during the next.