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.

A NEW ATTITUDE

A NEW ATTITUDE

I had thought for quite a while now that there is nothing new in the area of feelings and attitudes, now I am not so sure that what I knew to be true is so. Here is what has happened so far:

Until about two weeks ago it looked as if I could expect to live another three or four years; this is from the statistics for people who have what I have, and is a number not too far from the average expectancy for all men in this country. I am well aware that these statistics imply and I intend to do anything that I can to come out on the far side of that bell-curve; I also found the study that found people with heart failure often over estimate how long they have to go. I had asked a few medical people, found more than a few articles online that all said about the same thing. My chore had been to get my head around that notion, to accept what was and then to get on with my life.

As I wrote a week or so ago I had an appointment with someone who discovered that I have severe apnea, but that with treatment I can expect to add perhaps four years to this cruise that I am on. And one other thing, he now has probable cause for something that I had been told many times was idiopathic. Treatable and redeeming–quantity and quality.

In effect I have just have just been offered a doubling of my expectancy; this idea is taking a while to root in my cranium and germinate, but it will. There are events and situations all through life that cause feelings and attitudes; except that this business is different, what I am feeling and how I am seeing the world is not quite like any I have ever experienced. I am not ready to say that this is unique, it might just be a variation on one or more, I just can’t say yet.

Obviously I am happy with the news, I have long ago discarded any wish to be dead notions; have reached the conclusion that whatever pains and discomfort come along, no matter how intense, they cannot overwhelm that of being, of becoming. This new thing is a testimony to perseverance, to scratching at the tunnel face until the gold vein is completely discovered; and for that I am relieved, perhaps more than a bit smug. This that I have just received is a gift, more to God than from; but it is such an overwhelming gift that no words are appropriate. Perhaps it would be as if someone gave me a new car–then I see that it is a brand-new Rolls convertible; what the hell do you do with such a thing! A great problem to work at as I go on.

I may write more about this as I figure it out and believe it would be of interest to someone, anyone else. Let me add one more thing: To say that this is more a gift to God than from God is because I know that without man God is irrelevant; He is what we are about, that makes us what we are.

UNCERTAINTY

There are times that bring on feelings of uncertainty or helplessness, they may arrive at four in the morning or as I walk down Michigan Avenue on a beautiful spring day. There are times when I look to what I have depended on and trusted, only to find that they are not enough or have disappeared. These are the times when I am sure there are no alternatives left in my cupboard.

When this happens I have found out that there is a reason:That somehow or other I have put myself in the center of my universe, this weak bearing. If I then imagine that I am not the center, and even though I can’t put into words or images what is I do know, I am certain of its Presence and know instinctively that it doesn’t disappear or disappoint. And when I do manage to get my head around that idea I find that I am in a better place, a place where I ought to be.

This is not a piece of any religion or cult, just something I discovered that fits right, and so I thought I’d pass it along.

Persistence pays

It is right to say something as I accept that I have added years to my life expectancy by following a string as far as it goes; and I admit that that is what I have realized this week.

I have been told perhaps a dozen times that my heart condition was idiopathic (the word idiot always came to mind), that I should live carefully and not worry about the cause, just the relief that all these medicines provide. Being a good patient that is just what I have been doing, as I was wrapping my mind around living in this new and limited body I kept asking unresolved questions about fatigue and all that it was doing to me and my life.

The pulmonary doctor finally said that all of my lung conditions had disappeared and that there was no need to return; I pushed the fatigue question yet again and so she ordered a sleep study which showed minor apnea that she wanted reviewed by a sleep specialist anyway. Reluctantly I made the appointment with just the thoughts of pacemaker and transplant as all the arrows left in my quiver–neither of which I was anxious to launch from my bow.

The sleep doctor pointed out that I have severe apnea, that waking those hundreds of times a night each sending a jolt to the heart telling it to wake up and to increase pressure; and that this constant bombardment by a hormone leads to the heart breaking down. That’s the short answer of the little I remember: except that here was cause for which there is a cure; a CPAP machine will control the apnea, allow the heart to get a night’s rest, help control my weight and mood. Pretty much everything except squeeze oranges for juice in the morning. Oh yes—looking at some of the online studies it looks as if I may have increased my life by a number of years—No Shit!

I didn’t put the meager medical details down as guide for others because I don’t know anything at all about medicine; but I do know that if I had not kept asking the question until I found someone who had an answer that made sense I would continue declining with the shorter life expectancy. There ain’t no guarantees that continued searching will bring resolution to all problems, no guarantee at all, and in that case acceptance is the right road to follow. But I know that not looking around for answers means that none will ever be found.

I could express this in a few other ways, with more precision and wisdom but this is just some information from a guy who had something going and pursued the string to the end.

A Refurbished Part for the Engine

I have never had the imaginative cues that would have me starting a book nevertheless a saga, I have never done much writing at all other than journals and these few unscripted scribbles, so I don’t know the rules or guides for starting a new chapter, finishing another. About all that I know is intuitive aided by the thoughts of just a few authors and a friend or two.

I know intuitively that I have just completed a chapter of what voyage.

Without resorting to those rules and guides for either novels or non-fiction writing I figure that a chapter has characters whose role grew, diminished or evaporated through the circumstances that the protagonist experiences and how the characters may fit and be important, appropriate or irrelevant. Out of the weather of events and fates the main character emerges into the next chapter a different person, one who is more fitting to his fate. Routes and passageways have been explored carefully so as not to damage the keel although the loss of a little hull paint is no great price as it will be replaced at the next haul-out.

It is not that there are or ever will be winners and losers, instead there is a crew who may or not be aboard for the whole voyage. One plans then begins a cruise with the idea that the plank owners, the original volunteers and the paid crew will be there at the final port; there is no reason at all to believe this, it is a wish coming from inexperience and love. At each port along the way there is the opportunity for some to leave and some to sign on; there is languishing on docks ahead a few whom I have no reason to choose or be chosen because they are as yet unmet. There may or may not be berths open at that time, and once leaving port it is rare to return to sign on someone who had been left on land.

Yesterday I was informed that the engine needed a new auxiliary part and that it would lengthen the time I can be at sea and maneuver me more easily through squalls; this addition came as a complete surprise to the engineers but it will be installed shortly.

Right now the pilot is obtaining charts of what opportunities have just been offered by the current repair, the charts he thinks he needs are now being drawn as the previous are now out of date and will be stored away in the map drawer. Like all charts they provide information, but no chart, no meteorologist, no pilot knows all that lays just beyond the horizon—and that uncertainty is what makes everyone anticipate the long cruise. The pilot has a few more lines from squinting in bright sun , he is not as quick to bend or haul a line as he had been, but this is of little concern because the tackle we carry has been proven and maneuvers well practiced.

The boat will make a test run of but a few days to check out the maintenance and fitting of the rig while thinking again on those new charts that are arriving piecemeal from the cartographer. The anticipation, that anticipation, tomorrow’s anticipation sparks the crew-ready to embark and hoist sails.

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.

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.

Surprise 2

I had intended writing about my recent heart failure adventure more than that first chapter “Surprise”; for some reason my several attempts just wouldn’t get off the ground, it was as if I had put everything I knew into that first one, there was nothing more to say; that the attitude of rationally handling the situation was said and shouldn’t be belabored.

This morning as I was taking off the electrodes that have been monitoring my heart for the last couple of days it came to me what was blocking my writing; I had been avoiding being scared, perhaps denying that I was frightened. It was that handling the situation was right at the time, that allowing the screaming heebie jeebies to fly around unchecked wouldn’t have helped what was going on either at the hospital or the first week alone at home. There had been a good chance that I could have stroked-out; there was a reason that all of those scans for clots was ordered, that the four times a day blood samples were taken, that the monitor had been on my chest for almost two weeks continuously.

Last week I was talking with a guy who had been in a situation where he couldn’t move or talk for two days, he was aware of everything going on but was unable to respond; to me that would be what it would be like to have a stroke, or one possibility. Strokes frighten me: the inability to respond, to indicate, to act and yet still be aware is horrible. That I had a high chance of a stroke for a while is a different fear than death, death has no content, it would be a brief experience before zero. Being in a stroke would mean not typing whatever I want onto this screen and then blurting to the web-ether.

So as I was in the shower, washing the adhesive from the electrodes off of my chest I let that horrible fear scream and fly around the room, felt the aloneness of not being able to do anything while yet aware of everything. This was the time to let that gremlin out to exasperate and then to evaporate.

There will be other threads of existential emotion that come from the experience, this is just the first; and each will be allowed its minute or two of power.