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 Lyrica March 3

I notice that a number of people follow what I write about my Lyrica experience so I feel an obligation to write of changes in my situation, this is the latest:The last three or four days I have had pain at levels 5 through 8, add to that is my anxiety level seems somewhat higher. Today I am increasing my dosage to 300 mg., 75 mg. q. i. d., along with 1,500 mg. of acetaminophen. It seems to be working already.

I write this after 10 p. m. of the first day at the new level, actually I haven’t taken the last capsule, will do so at bedtime; I have taken 225 mg. so far, the next will bring it to 300. I feel better already.

The primary pressure to lower dosages is fatigue, it is a stronger effect than the dizziness or drowsiness; I’ll use the higher dosage until the discomfort goes away, then I’ll titrate lower, and see how it goes then. I think that if I can manage pain by occasional changes I’ll be alright. The fatigue affects my mood, makes me feel helpless and is depressing.

My pharmacist told me that CYMBALTA has had some good pain relief results, this is old news, I first heard of this kind of thing thirty years ago, perhaps this new stuff will be better; let’s watch what they find, see if there is an alternative to Lyrica.

That’s all I have about fibromyalgia and Lyrica today; I continue to be pleased that there is this first medication, something for us that has measurable results.

A little warmer weather wouldn’t hurt either; that we have been having stormy and variable weather lately doesn’t help the situation.

February 16 Fibromyalgia, Lyrica

Yesterday I sent a message to my internist saying that I had reduced my Lyrica dosage downward; I take a total of 225 mg. per day, 150 at night, 150 in the morning. Not too many weeks ago I had noted here that I didn’t think that I could go down from the 300 level, now I feel differently. I take acetaminophen on an almost regular basis, no more than 1,000 mg. per day. I started, in August, at 75 mg., moved quickly up to the maximum recommendation of 450 mg., then began this slow reduction.

There are two motives for doing this: The first remains that I don’t want to take any more medicine than I have to. That is why I stay away from the supplement counter at the drugstore, the innumerable recommendations of friends and associates, none of whom are healthier than I am. If a drug is needed I want a person in a white coat, who works at a teaching hospital, to write the order and attach a signature. The popular sneer aimed at western-medicine comes from a political or psychological need, driven by poor logic and an absence of science. The psychological need is one for control, the unexamined belief that one should take control, be in charge, fight the unpleasant, etc. The logical mistake is that one we were taught in Logic class, post hoc ergo proctor hoc;if my reader is a follower of self-medication that old logical fallacy is something you had better stay away from, it is about your fallacy.

My second reason for trying to reduce the dosage is the side effect; currently it is this feeling of fatigue that colors everything I do, or don’t do. It has destroyed my social life, not that my social life was a difficult target for destruction, but there was something there. I want to be rid of this malaise.

Dizziness continues at a low level, for short periods; it is far from being the overwhelming problem it was at the start of this therapy in August.

I continue to see what I call repairgoing on, I use that word whenever I write or talk about this, no one has come along to contradict me, so I continue with it.

That is my state of treatment as of today, it will change, I will try to make a record of it here.

Lyrica side effect, January 29

I was out doing an errand this morning when I wondered why I was feeling a bit dizzy, thought that perhaps I needed to go home for a nap; then I remembered that I do take Lyrica, that there will be the occasional dizziness, and that it doesn’t last.

I am at a place where the side effects are a secondary or tertiary issue, and that is a good place to be; it is good to have the reminder, occasionally, that I am taking some powerful stuff, and that it is doing whatever it is that it does.

I thought I’d just pass this comment along, for those who are considering using it, or of stopping it. I think that main issue should always be, is my pain reduced? If the answer to that is yes, then figure out some way of living with the other effects.

Lyrica, fibromyalgia, January 24

I wouldn’t be writing another log note on this subject except that so many have read the previous:

There isn’t anything to add to the previous notes; the dosage stays at 300 mg. of Lyrica and 2000 mg. of acetaminophen daily, broken in 2; there hasn’t been a debilitating day of pain in weeks, there is slight dizziness early in the morning, feelings of fatigue and naps throughout the day; that’s about it; I certainly want to continue with this drug, have no reason at all to stop taking it, am so happy that I overheard doctors talking about it, and that I asked them to tell me the story.

There is one observation that I have made from reading the reports of the others who have this thing: I don’t think that there is as much subjective or unique nature to the problem, there appears to be a strong common thread in all of their stories, both history and current situation; I have nothing other than a hunch about that, you can judge that one for yourself.

Again, this is one guy’s observation and opinion, I buy this stuff at the same price and place that everyone else does, have no affiliation with Pfizer or any medical group.

My only advice continues to be the same: Be active, don’t wait for some physician to come to you, and make sure that you have a doc who appreciates active patients, if yours doesn’t get rid of him.

———————————————————————————

The hawk has just returned, I think that it is a kestrel, it is sitting outside my window, all the sparrows have disappeared from view, none in the bushes or on the wires; it was here last week, I wrote about it then and then did a search to see what kind of bird it might be, kestrel was all I could come up with.

January in Chicago

It is a great idea to have a sunporch, to be able to put a computer out here where I can see the sun come up over the buildings and watch the birds at the feeder; but sunporches have no connection to the insulated world, they hang right out there. Out there this morning is:

umidity:	68 %
Wind Speed:	W 10 MPH
Barometer:	30.41″ (1031.7 mb)
Dewpoint:	-13°F (-25°C)
Wind Chill:	-22°F (-30°C)
Visibility:	10.00 mi.
More Local Wx:	3 Day History:

That is a copy from the NWS statement at just before 7 a. m.

It is a cold morning to be sitting in a sunporch and typing.

But what could make a good, strong cup of coffee taste better?

What could make me appreciate more this oversized Irish fisherman’s sweater I bought off e-bay last year, and the heavy Orvis shirt over it, and my Lake Wobegon Whippets cap that I almost never wear?

The weather is predicted to begin warming tomorrow, good.

A guy at work overheard that I had an interest in fibromyalgia, it turns out that a relative of his has it, that it has made her life miserable and those around her as well; like many others she has had uneasy relationship with her doctors.

It is not unusual or difficult to understand why some doctors don’t act well around an ailment that doesn’t have a clear explanation (although that is changing), doesn’t have the same symptoms every day or patient, that no medication treats well or consistently, this makes sense because these people have a disposition and are trained to do something to make people better, that is what they are about; and when they can’t make you better they don’t always act in ways that we’d like. Hospice people find the same situation, the patient ain’t going to get better, that is why they are in hospice, they are about to come to the end of their lives; doctors want to make us better, their mission statement is simple in that regard, many of them can’t handle existential complexities any better than the rest of us, and most of us don’t handle threats to our being very well either.

I have a pretty good internist, deputy chief of his department in a teaching hospital—-I went to him with this medicine in mind, he did not come to me; he goes quiet on the subject of fibromyalgia, but he wrote the prescription and he monitors the progress. I really don’t give a damn if he is a believer or not, that isn’t necessary, medicine is a co-operative effort. He is not shy about matters of weight, blood pressure or cancer, and he listened to me when I said that I wanted to try this stuff, he looked into the research and then wrote the prescription, adjusted the dosage when I told him I needed more, now less. I know that judging doctors is a common sport, but it won’t make you healthier or feel better; if the doc is bad fire him or her, otherwise get in tandem and pull together.

Getting back to the fibromyalgia: I have not had a day of disabling pain in a couple of weeks, and that one lasted less than a day, this after three decades of feeling badly. Currently I take 300 mg. of Lyrica and 2,000 mg. of acetaminophen daily, broken into two parts; this works for me right now although I can sense some discomfort around the edges, I was hoping to cut the Lyrica back again but I don’t think this is the right time. Let me repeat what I hope I have said each time I write about this: This works for me, the side effects diminished from the difficult beginning to where they are barely noticeable now; if fibromyalgia is a difficult enough problem for you then maybe you ought to give it a try. I have no relationship or contact with Pfizer, am not in anyway connected to the health care industry, other than checks that I send to Blue Cross.

The bird feeder is empty, my chilly fingers are wondering if I can handle the fitting that I put up there to hold it in the tree, with gloves on? I found a fast release shackle from the sailboat and put it up there a week or so ago knowing that there would be a time when I would appreciate not having to untie and retie stiff that stiff cord, this would be such a morning, but the shackle has a split ring on the cotter pin, that won’t come off using gloved fingers.

I feel as if I would write more about a philosophical problem I am thinking about, but I will restrain myself.

Just remember this:—It takes a morning of real cold in order to fully appreciate all that a cup of good, strong coffee has to offer; sip the coffee, stare at the empty bird feeder, watch the sun come up over the apartment buildings, and then make a day.

Lyrica & Fibromyalgia update

As I mentioned previously I have backed my dosage down to 300 mg. per day, with the intention of see if I could reduce it from there; this was about three weeks ago, I think that I am going to stay at the 300 mark for a while, I sense that I am on the edge of relief and not.

One thing I have realized is that at times I feel as if I have no energy, it is just a feeling. There is no loss of strength or ability to work, it is just a feeling, perhaps left over from the time when I felt bad. This feeling comes occasionally, I think that it will come less now that I understand it has no base.

My pharmacist and I were talking a couple of days ago, he inquires regularly about the Lyrica; I told him that side effects were almost absent, that I am surprised when I feel something that might be an effect of the drug. There is one exception: Early in the morning I feel unbalanced for a few seconds when I get out of bed, and who knows what that might be. I am on no other medication other than a bit of aspirin, and that’s the story.

I understand that Lyrica was chosen as one of the big ten medical advances of last year, that’s good, not relevant to anything though, just a good thing to hear.

Another Lyrica update

Five days ago I reduced my daily dose from 375 to 300 mg., half in the morning, half at night.

It is rare now to have one of those debilitating days, a day when going to the toilet is the only justification for leaving bed.  There is the occasional report in from each and every fiber, ongoing reports that muscles and tendons and bones are tied together, that those circuits are alive and firing.

The daily period of being dizzy is thin and short.

These are the reasons I had for cutting back on the dosage, and I have let my internist know all of this.

I am going to repeat something that I wrote previously:

It is as if a repair is going on, not just pain relief but some kind of restoration.  As I know almost nothing about how and what this drug does I may be full of bullshit, but repair is the impression I have now, and for the last couple of months.

I am sorry that this stuff doesn’t work for everyone, that the side effects are not worth the benefits; I know what you feel, I suffered for about thirty years, I do know.

I also remember what an internist told me decades ago:

If you could get rid of the depression I probably wouldn’t see you as often as I do.

He was right!

Looking for other Lyrica users

I would like to correspond with others who are taking this stuff, I have not yet met anyone who uses it, I am the only patient my doctor has that is on it, what little outside information or contact came with a one time discussion with a neurologist and and a pain specialist. This is a big deal in my life, and I have to suspect it is the same for others; talking to someone else who is navigating the strong side effects, having benefits, would be helpful.

People with fibromyalgia have relegated themselves to the closet because no one wanted to have anything to do with us, we were strange and couldn’t be fixed. I don’t know how many suffer, and because we learned to be silent it may take some doing for them to appear.

So, if you are one of them, please let me know.