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.

THE DONUT HOLE

I just don’t have an extra $1,200 in this year’s budget; that is what it will cost me extra out of pocket for Rx’s now that I am in the Medicare Rx donut hole , I still pay my monthly Blue Cross and Medicare payments, it is just that this is additional.

It took me a fair while to find that Cymbalta is the right drug for my fibromyalgia (30 years), and that it does great things for my mood disorders as well; now comes the decision that I have to believe many people are faced with making: Do I take less medicine? Do I search for a foreign source that might be problematic? Do I search for something generic that just might do the job? I just don’t have an extra $1,200 in this year’s budget: I still work and receive Social Security, I live on a pretty tight budget, one that was right for me until I was admitted to hospital with heart failure and then discovered that damned donut hole in my path.

Of course I had heard of it, and didn’t think that I would come anywhere near it, until I was admitted to hospital and then was off work for a few weeks. The surprise and shock of exploring for alternatives is something I could do without.

It is not that I am asking for disability or charity, I am not, I plan to continue working for a long time yet, it is just that my resources are less, that is why my budget is less. Something about this situation strikes me as not being right, that it is a bigger problem than was obvious; perhaps older people don’t post as many weblog comments and complaints, perhaps many of them are tired and have given up much as long term unemployed often give up. I don’t know why there isn’t more disturbance about this, maybe we have been living under conservative rule for too long and learned their lesson of not talking about things that disturb us. Anyway this is something I want others to be aware of more than we all are; this kind of decision is not the kind I want to be making at this point in life, I have other things about to be concerned.

I don’t know if my complaint comes from the right or the left, I tend to think it is neither, it is an aspect of conditions here and now, one that needs to be addressed.

Men and Pain

Three men that I see on a regular basis complain of being in pain, they are known for their pain: The first has cluster headaches, the second had polio that left him with a malformed leg, the third injured his back in an accident. These are not guys that I have sought out in order to make a point, I suppose that all of my life I have known men who have been in pain of one sort or another, often it was me who had the pain. As I was going through my clinic course at the Chronic Pain Management Clinic of the RIC I made a point of letting each of them know what was going on with me, much as I did by posting messages to this site in case that someone might benefit.

Today was my last visit to the clinic, the follow-up visit to check if anything further needs to be done for my fibromyalgia and knee pain. There wasn’t much to talk about with Dr. R. because my pain is absent, and when it does threaten to reappear I know that it is because I have not been doing the exercises recommended to me–all in all this has been a successful thing to do.

Since we had a few minutes I mentioned my frustration that the three men I know who might benefit in a large way from the clinic would not be coming over–they refuse. What the hell can I say about men who choose to remain in severe pain than explore what has been a success for me? It is not that they disagree, they have known what I was doing throughout the five weeks I went there, it is not that they deny that they have to use opiates and in one case surgery in search of alleviation, they just turn away from actively helping themselves. She nodded in agreement and told me that it was a sad but common story.

This story is not meant to be objective, nor is it meant to be free from sexism; it is somehow a symptom of something else, something to do with being responsible.

I am going to write this while I still feel the frustration from their ignorance, while I feel confusion that some will not explore possibilities to feel better, I want the temperature of emotion to help shape this post.

To decide to feel better, to decide to be in a better place than present is something that is open to everyone in one way or another; whether it be depression, joint pain, a relationship problem or a pain in the ass there can always be the decision to feel better, to manage, to understand, to reduce, to eliminate whatever it is that hurts. It only takes the courage to seek an alternative or to ask for help, and to seek it again if the answer isn’t immediate.

Again, this is not as well thought out or written as it would be if I let it incubate, but sometimes a little emotion is appropriate.

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.

Goals and answers

Yesterday was my fifth and last session at the Chronic Pain Clinic; everyone I met with asked the same question–if I had met my goals for the program? To each one I answered the same: I had no goals, I could have no goals because I was ignorant of what the program had to offer, what my body could accomplish, I can’t foresee the future. This didn’t sit easily with any of the therapists, as I well knew from previous discussions; they have forms to complete, statistics to be calculated, and they are trained to having goals in what they do. What I answered each of them was whether I was happy with what had happened at the Clinic, was I discontented over any part of the program?

I am pleased with every part of the program: with the attention and focus of the physicians, the alternate medication they offered; with the attitude and professional nature of the nurses; with the insights and understanding of the psychologists; with the advice and attention of the O. T. staff; with the exercises and rehabilitation offered by P. T.; with the increased management offered by the bio-feedback portion. All areas offered benefits that I attempted to absorb to the fullest. But I had no goals, I had only attitude, to get all that I could out of what this clinic was offering, to do whatever I could to minimize my pain and discomfort, to be open to whatever benefit might come along.

This is of course an attitude towards the spiritual or Spiritual life; I can’t say that I am in full communion with the Divine, who could know that? I cannot say what my Spiritual quest will give me, if I could then it wouldn’t be a quest for what is unknown to me now. This is an attitude that often results in anxiety of the unknown, it would be comfortable to know that if I prayed a certain number of times, if I did so many good works, if I followed a particular method I would gain enlightenment. That’d be a great thing if it was so, but it is not, it has never been the path to enlightenment, never will be; it may be the reason that the organized church is on the edge of irrelevancy, except for the lack of alternative. To be catholic is to be a good follower, it has never been anything else.

I received far more from the Pain Management Program than I could have predicted, and I am pleased that I did not have quantitative or qualitative goals that may have given me temporary pleasure but would have restricted my growth. The same can be said of my spiritual journey; I don’t know where it will lead, I have faith that good will result, but I have no knowledge of the future or of the infinity of the Spiritual. And that’s the way I have always been.

And that would be a difference between being a conservative and what I am.

Hatching an idea

I feel the need to write because I want to break through, to discover something that is just about here and needs a bit of a push.

That’s what I thought until I put those words down here; for weeks now I have been banging and crashing around in a search for the idea that is about to break out, the idea that needs release, I need to proclaim some kind of discovery. That’s what I though until I wrote that first paragraph, and until I looked at it long enough to realize that there is no great idea ready for hatching, that I have been planning a coming-out party when there is nothing new about to emerge. I was planning the party in order to have a party, nothing more than that ego trip of self-proclamation. I don’t have anything new to say, nothing new to address, nothing new to conquer; but I like the idea of thinking that I do.

Here is the background for what I am trying to say: I enjoyed writing a few satisfying posts during the winter, when they came out well I felt good, when a few people read them and commented I felt better; they were early morning discoveries that added meaning to my day, and then the well went dry. I had nothing to say other than the few things I had done, I have no new way of saying the old ideas, I have no message that can’t be found many other places. I missed that writing.

And then I began to make explanations for my frustration, some discovery was about to burst forth with my help; I felt that I now had a serious chore to find a new idea and share it with everyone—-but I don’t, it was a fool’s errand, and here is why.

The idea that tomorrow will be as today, that the continuum has no breaks or quantum jumps was depressing. I want the excitement of a brand new idea or challenge, and so I manufactured one, a Potemkin’s village made out of the following:

I am about to turn seventy this Halloween, a significant number, no longer will I be anything other than seventy and counting. The second thing is that the work I have been doing at the Chronic Pain Clinic is making me healthier than I have been in decades, a most unexpected result. The third thing is that I have been put back on anti-depressant medication for the pain, but it is also doing things for my mood, I had thought that anti-depressants were something that I had long got past, that my brain was making its own feel-good molecules and needed no assistance; this is known as denial. I am going backwards and forwards at the same time; healthier in body; and yet needing medication to alter my mood, just as I had used them years before.

I walked past a senior-center that the City of Chicago runs just around the corner from me, I was out doing my cardio-vascular exercises when I looked in through their window, saw the umpteen individuals sitting and doing what appeared to be board games. There was something important for me to see here; the Pain Clinic doesn’t care about my age other than for calculating my target heart beat, the subject doesn’t really come up over there; and yet here were people of age similar to mine hunched over boards, moving their markers, killing time and chatting. I couldn’t get that image out of my mind.

There are dozens of platitudes about age and aging that are as helpful as breasts on a boar; this is a complicated business that has no role models that fit me exactly; I don’t know if they fit anyone exactly, or do people fit themselves into the model of the geezer that is put before them. A good friend asked me recently what role model I was using for this next chapter of my adventure?, I have none.

John McCain is an active older guy, but his mind was frozen into the patterns of long ago, he is just a champion for what he thinks was right back then. There are older businessmen, but life has shown that I am no businessman, they take that stuff seriously, they really believe that acquisition and control are important. I have never written anything for publication, so don’t know that road enough to find my way very far down it. I never earned a college degree, could never figure out which direction to go there nor reason to expend all of that energy; I was too young and unformed. I can’t find a future down any of those paths.

What I am trying to say is that I had erected a monument to being a person of a certain age who should be acting and feeling a certain age—-and the monument was made of cardboard. The new idea that I have been incubating is that there is no new idea, no roadside marker telling me to change my ways to those of someone who should be getting ready to shut down, preparing to wrap it up, or in love with the past. There may have been a valid sign years ago when bodies wore out quicker, minds could be in love with the past; but I don’t find that to be so now.

I don’t know if and what changes I will find in life as I go on, but I am beginning to think that there will be less than I thought, that the jokes of old age may be becoming passé.

I do feel better, clearer for having written this; but it isn’t over, this is the first draft of an attitude that I need to install in my soul, I hope to refine it.

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.