Tag Archive | sleep

Pleasant Pain: Fibromyalgia and the stress and strain of even the good times


It seems weird to say that pleasure can create pain, but it is true. In this case, the pleasure was a family visit. This missive is NOT to complain about them, as it has nothing to do with the family themselves … but rather to explain and hopefully prepare any readers who have FM for the events which likely will happen to them, due to otherwise good or  pleasant events.

My pleasant event … I had my Mother, Daughter, grand-kids here for a week ( as well as a few drop in’s by near by relatives ) Now, this meant trips out, go do things together, making meals for large numbers, total changes in sleep times, life cycles, etc. All for very nice reasons, and I enjoyed having them all around for the week … however FM makes NO distinction between body and mental stress brought on by good times.. or bad, which is my point here. 

In a word, I am paying for the visit in pain, just as I would if I had been through any other stressful demanding set of events.  And given as I was already IN a flare state due to recent surgery ( see prior post ) … I am double dipping here. However, that fact is almost to my benefit. As the body was already maxed out with a flare, so that adding a few more events, did not seem so bad 🙂

However, there were issues the surgery did not create, that the family visit … did. What are these reactions and why do they matter ?

Known VS unknown environments: This one is a combination of factors. When we are out and about, we lack control over the environment, temperature, light levels, exposure to chemicals, pollens, and more. This creates a large stress loop feedback to the body, that by and large we have NO control over. And with a family visit you are more likely to engage in such events.

( I was able to bow out of one of the planned activities  and rain canceled another, so things were not as hard as they could have been. But as we with FM know any trip out for any reason, can be draining  )

Dietary changes: In the normal course of our days, we can eat when we want, how we want etc. ( or rather we can to the extent our Gut permits us too ) If you have a houseful of guests however, their needs become paramount, which almost always means a change in your diet. If for no other reason than the time of day that you eat, will tend to change.

IBS: Which due to the diet changes and general stress, kicks off like so:

Abdominal cramping and pain, Diarrhea and/or constipation, Flatulence …which with a room full of guests can be a problem 😦 Bloating , Abdominal distention, Nausea.

Push Crash: Since you are acting as the host, even with family, you will tend to push yourself to keep up with the obligations that go with that state ( this is true, even if you do manage to bow out of some of the activities as I said above )

Sleep disruption: If  any of the guests stay in the house with you, then your entire sleep wake pattern can and likely will be disrupted. ( In fact, this is likely to be true, even if they sleep elsewhere, as their “day” will start sooner than yours over all, which will force you to cut your sleep hours short to accommodate them ) This creates sleep deprivation in either case.  Which causes problems like so:

Aching muscles, blurred vision, depression, drowsiness, decreased mental activity/concentration dizziness, fainting, confusion, hand tremors (  my dominate hand had the shakes so bad, I could barely hold my glass at one point ) Headache ( understatement say Migraine here ) hyperactivity, hypertension, irritability, memory lapses or loss, nausea.

Just to name a few

General flare: Which is where all issues above, pain etc, intensify. And to top it all off, I got a grand case of Laryngitis from talking so much.

All of the above and more are true.. even IF the family over all does understand what the term FM means and how it affects you for the simple fact, that even if they DO understand, no one who does not live with you, day in and day out, is going to be able to adjust their actions or moderate the demands their presence makes on you to any large degree. As it takes more than just “understanding what it means” what it takes is understanding what it means, for them regarding changing how they behave and the demands they make on you.

And these extra demands, started before they showed up. With extra shopping trips for food stuffs etc, more cleaning activities and the like, just to prepare for their visit.

Now, would I change a thing about any of it ? No, totally enjoyed it and would do it again in a heartbeat 🙂 But a word to the wise, even pleasant activities have a price, if you have FM and it is best to be prepared for the flare and other issues it will create.

Fibro flares, letting the Dragon .. sleep


 
Most of us with FM, discover something rather interesting. That we seem to “get better” as time goes on. Almost all of us can say that we are not as bad off now, as we were years ago, when we were first diagnosed with FM.Now, this brings up several issues that need to be covered, not so much about ourselves, but often about how others feel about us and what they expect of us.

Acclimatization:

For most of us, the main reason we are “better” off is due to the simple fact we have learned, as time has gone on, how not to wake the dragon. Meaning we have learned to make changes in how we lead our lives, that let the dragon that is FM at least doze, if not sleep.

We have learned, not to overdo for example, even when we feel relatively well. This is frustrating and a hard one to learn, for the simple reason when we do have a “good” day, we tend to try and “make up” for all the things we let slide on the bad days.

This is a mistake however, as we just end up going down for another round of pain and misery. ( See Push crash, on site ) So we learn, once the Dragon is napping, not to walk over and kick it and wake it up again. There is a problem with this stance however, not so much for ourselves, but for others, friends, family and even our Doctors.

The medical society may note the improvement and often makes the mistake of thinking we are “better” and therefore, might cut back on the very medical support we may need to maintain that state of “better.” Our friends and family may take notice and start piling more things on our plate for us to do, and or, cut back on the things they were handling for us, since we “seem” to be better.

This is perfectly understandable, from their point of view, but it is a mistake for them to make the assumption that just because we have finally reached a point were we are not entirely miserable everyday, means that the FM has gone away. As it will certainly prove to us, the first time we try and push ourselves to do things that will wake it up.

Self Education:

We have learned what things help our symptoms and what makes them worse, when it comes to our diet, or sleeping patterns for example. We have learned what actions will demand a high price in pain and have figured out other ways to do them and or, we avoid doing them. Learning to live with FM is an on going process, of self education.

For each of us, that education is one of a kind, as none of us reacts the same way to all things. We cannot even be positive of the same reaction to our behaviors or actions, on any given day, as the daily limits, if you will, can change without notice with FM. They can change on us, day by day or even hour by hour.

This is tough one to figure out, as we have to recognize some very small signs. We tend to learn that we are poking the dragon and to stop doing whatever it is, so that it can doze on, rather than fully wake it up and have it start biting us. We become the best detectives of our own bodies and we can often learn to see even the small signs that tell us, stop doing X or we will wake the dragon.

Passing for normal:

We sometimes make the mistake of thinking, that just because we have somewhat tamed the beast, that we have bested it. This can lead to a very self delusional state called ( Passing for norma on site  ). A behavior of which anyone with a disability is familiar, as nearly all of us have tried it at some point.

This “put on” front, can make those around us more comfortable, as it presents them a “face” they can deal with. Which, while it might help others, it does little for us, besides keep the dragon of FM awake and lively for most of us.

Lack of understanding by others:

If we avoid the things that aggravate our FM and do not attempt to do more than is reasonable for our condition, we often can maintain a state of “better” provided however, that we keep right on NOT doing the things that will aggravate it. This is the state that is the most difficult for others to understand.

As we seem to be better, therefore, they assume we are better and their expectations of us, rise. This can lead to some serious problems when we try and explain that no, we cannot do …. fill in the blank …. action, despite the fact that to all appearances, we seem as if we should be perfectly able to do so.

This so called “appearance of normal” leads others, from family, to our doctor to believe we are “faking” the extent of our disablement, to avoid work or actions that we do not want to do. It can lead others to believe that we are just “lazy” or trying to shirk our responsibilities.

This unfortunate side effect can be the hardest hurdle of all for a person with FM. We have finally gotten to a point where we are not in intolerable pain every waking hour and society as a whole, suddenly wants us to tempt fate and behave “normal” again. And since we, if we are wise, we refuse to do so, we must be malingering, as we appear to be in “good” shape. ( You look fine, and why that is a lie, the face of FM on site )

Real Malingers:

By definition: “Malingering is a medical and psychological term that refers to an individual fabricating or exaggerating the symptoms of mental or physical disorders for a variety of motives, including getting financial compensation (often tied to fraud), avoiding work or military service, obtaining drugs, getting lighter criminal sentences, trying to get out of going to school, or simply to attract attention or sympathy. ” Wikipedia

So there are those who have a short term problem, that will heal, who will “milk” the disabled state, for as long as possible, even to the point doing hurtful things to themselves, to keep the “benefit” of being injured, coming. Now, anyone who deliberately extends a disabled state, when they have the option to be fully healed, has some serious maturity and mental issues, it goes almost without saying.

However, since there are people who do this and it is commonly known that there are such people, it is assumed that we with FM, fall into the same category. This is despite the fact that our FM is not yet able to be cured and appearances not withstanding, has NOT gone away

Catch 22:

Catch-22, describing a …. situation which presents the illusion of choice, while preventing any real choice..”

We with FM, find ourselves in what is called in America, a catch 22 situation, meaning … if we seem to be normal, we are expected to behave as if we are healed. Yet if we attempt to do such a thing, we will fall right back into the round of pain and perpetual flares, that we were experiencing at the time we were first diagnosed.

The reason we had so many flares then, is we did not know what we were doing that was setting them off, as we did not understand the disease. 

But, since we have learned to make the behavioral and other life style or dietary changes, ( as well as, one hopes, have the proper medical support ) that will allow the dragon to doze, we are damned for our very state of seeming to be near “normal.” And will often be pressured by our family and our doctors to act on that appearance, even though for the most part, that would be to our own self detriment.

So, do not allow your friends, family or your doctor, let your appearance fool them into thinking that everything is fine. You must explain to them, as often as is needed, that yes, you have found a state where your FM is more tolerable. But the only way to keep it that way, is to let the Dragon doze and for them not to try and make you do the things that will wake it up, as it is you, who will pay the price in pain.

Self defeating attitude:

To many, the prior statements are considered self defeating. Meaning, they will tell you that if you accept limits, that you have a self defeating mind set and will “never get better” or worse ” you don’t want to get better” or… you get the drift. The medical society is particularly bad at this, with their attempts to “normalize” us. To the medical world, anything not normal is deviant and needs “correction.”

This is despite the fact that they have yet to offer us anything that comes even close to curing FM. They cannot even agree on the causes of it. Yet we, as the person who has to suffer for overdoing it are expected to “push” ourselves at their command, take whatever drugs they hand us and just ” do what we are told.” It is yet another catch 22, medical style. There is often no good choice.

We are expected by almost everyone, from our family, to our doctor, to push, push push ourselves, whenever possible. Our failure to do so, at any opportunity, means to many, that we have “given up.” Never mind the fact, that we have simply found a balance point with FM, to create the least amount of pain and discomfort, as possible. 

My personal advice is … ignore well meaning friends, family and yes, even your doctor, if they attempt to force you back into the same condition you were in, before you understood what FM means and learned how, in some degree, to manage the illness. Let the dragon sleep.

The long sleep insomnia and FMS


Well, I guess my body had had enough of this up all night bit, and I slept for almost 12 hours. In fact, the only reason my mate woke me, is I was getting behind on my meds. It has been a long time since the body has just said “okay, enough of this no sleep.. watch this” !

This is not the first time this has happened, but what surprises  me, is that it does not happen, more often. As one would think, that if the body is sleep deprived enough, it would do this, almost automatically, yet, it does not.

Now most people have experienced this, long sleep, at least a few times in their lives, often right after a period of prolonged energy drain. But it is in fact, yet another form of insomnia. As weird as it sounds.

Yet, such prolonged sleep does not bring the rest one would expect. In fact, it often brings a feeling of a slow brain, body and a general malaise, which has no real connection, except to the excessive amount of down time.

My mate often complains of this almost horrid feeling, if he has “slept too long”.

“Too much sleep can weaken your sleep system. Your body is not awake for long enough to absorb enough sunlight, get enough exercise or engage in enough tiring activities.

Your body temperature takes a long time to climb to normal in the morning making you very drowsy for several hours after waking. In fact your body temperature may not climb to its peak at all, so you may feel lethargic all day. This is because excess melatonin that has been released by keeping your eyes closed for a long time does not dissipate quickly leaving you feeling drowsy and drained of energy.

Too much sleep can actually weaken your immune system leading to lowered resistance to colds, flu or worse.”  Link

Insomnia and FMS


Well, I did the up all night bit again, save for about an hour when I dozed out on the sofa. And to make matters worse, when I did get up and go to bed, the pain started in to where I had to break out, for the first time in ages, a second dose of my pain killers.  I try very hard, NOT to do that, as the supply of them, is limited. But I did get at least some sleep.. sorta 😦

A sleep study I had done, shows the rather classic pattern of the ” sudden bursts of awake brain wave activity, happening in the brain of someone whose is supposed to be in deep stage 4 sleep ” Now what that means, in a layman’s terms, is that our very brain will suddenly throw alpha waves, into a time period when we are supposed to be having Delta waves, in other words, be in a state of deep sleep. This lack of deep sleep, is considered to be the main reason we have FM.

They know this, for the simple reason that if you deprive ordinary people of stage 4 sleep, they, rather rapidly in fact, start to show the common signs of FM. Now as to which comes first, no one knows.

What are the effects of this kind of sleep deprivation  ? They are very well known, and can be very serious, which makes one wonder why the idea is not given more attention. As the known effects are:


Effects of sleep deprivation

aching muscles
blurred vision
depression
daytime drowsiness
decreased mental activity and concentration
weakened immune system
dizziness
fainting
confusion
hand tremors
headache
hyperactivity
hypertension
irritability
lucid dreaming (once sleep resumes)
memory lapses or loss Article
nausea
slowed reaction time

And in extreme cases
Hallucinations (visual and auditory) and or death.

Now most of this, we all know very well, do we not, yet no one seems to take this  massive amount of overlapping evidence, seriously. Most of the things we are given for sleep, are either outright ineffective and or have so many side effects, they are worse than useless.

So it begs the question of why, if the detrimental effects are so will known, is nothing more positive, being done about it ?

Something to ponder, perhaps on the very nights I cannot sleep, since I seem to be doing a lot of those lately 😦

BB

Esta

Feeling half way human and running on empty. FMS


Feeling half way human today, for the frist time in weeks. It’s so odd, that we see a day where we are half way alright, as a good day ! I guess FM does one postive thing for us, in that it forces us to be appreciative of small victories, that we otherwise might ignore.

I have been running on sheer nerves and fumes for weeks now it seems, to the point of literally having a major flare with the “shakes” for at least the past week or so. If you have never experienced this one yet, count yourself blessed.

As it’s where the body and mind are so tired, that you find yourself having purpose tremors when you go to do things, often to the point where you cannot do them, at all, and your brain is so overloaded, that even a sudden noise is enough to make you jump out of your skin. You cannot think or process anything worth beans, and your confusion level skyrockets.

You bash into the walls, as your coordination has completely gone to hell. What little of it we have even on a good day. You do not sleep, as you literally cannot, as neither brain or body, will shut up long enough, to let you.

It almost goes without saying, but I will say it anyway, your temper gets more than a bit testy. As I am sure my Mate could attest to 🙂 I know damn well the people in the half a dozen medical dept’s I have either been in or talked to in the past weeks, know it for a fact, unless they are totally tuned out. ( I think some of them really are tuned out, but they are due a major wake up call and I plan on seeing to it, they get it )

This is a flare to the point of sheer flat out exhaustion. You are so tired, mind and body that you can barely function and things just start not to work, at all.

Now, I pride myself on the fact that most of the time, I can manage to work around most things FM throws at me. But between the extremes of weather and much added stress and strain, this time … not so much.

This time, just not enough reserves to deal with things outside of my direct control, my healthcare being a major one, and then to top it all off, have to step around the rocks that FM tends to toss in my path, at the same time, and I have tripped over a whole mess of them. I have the bruises to prove it !

But, finally, seeing a corner turned i think, ( crossing fingers ) and hoping I can regain the momentum, that normally keeps me going….

Welcome to my world 🙂

BB

Esta

Up all night and FMS


Well, good news and bad news today. The good news is, I will not have to mess with my food benefits again, until 2013.. so yeah 🙂 The bad news is, I am back to being up all night.. sigh….

This is the thing I wanted real sleeping pills, for ! I am racking my brain here, trying to figure out just what is setting this off. Even with my other medications,  I am tossing and turning like a top and having to get back up, repeatedly.

Now mind you, this is despite the fact that while I am up, reading, watching TV or whatever, I am sitting there falling asleep, but .. big but here, go to bed and lay down to try and keep that going … and forget it.

I think its the back problem again, as what seems to be the worst, is my lower legs, cramping up, in pain, etc. Enough to where the problems, wake me, regardless of how tired I am.

Which just pisses me off, as I should have already been seeing a Chropratctor over this. However, if you have read my other posts, you know how badly that idea has gone. It is making me real short on my temper ( born a red head and you know what that means )

Now, I know full well that getting upset about it, is not helping matters here, but it is very hard not to, when the delay, is due to other peoples greed or their stupidity, and I am the one having to suffer for it.  

I can deal with just about anything, if I know that all that can be done, is being done. It’s when you have situations like this, when what would help, is not being done, for no good reason. That just raises my hackles up. 

But, I need to get over that and chill, as that is NOT helping my sleep problems, in the least. 

Hail to all my fellow Vampires of the night and may you rest better than I am

BB

Esta

To sleep, perchance to dream and FMS


Ah, that thing so near and dear to us, sleep. Yet in seems when you have FM, it does not seem to matter how many hours you close your eyes, you still wake up feeling like you still have not slept at all.

Now why this happens, the reasons vary and are kinda complex, but short version is, an interruption of the sleep pattern, itself. Normal sleep looks like this:

Stage 1 is a transition state. In this stage, the eyes move slowly and muscle activity slows down.This is a light sleep where you can be easily awakened.

In Stage 2, this is where eye movement stops and the brain waves become slower, with just an occasional burst of rapid brain waves. At this point, the body is preparing to enter deep sleep.

Stage 3
At this point, there are extremely slow brain waves called delta waves are interspersed with smaller, faster waves called theta waves. The sleeper is far more difficult to awaken at this point.

Stage 4
Deepest of the four stages. No eye movement or muscle activity occurs during deep sleep. During this stage, the brain produces more delta waves than theta waves. This is the major point the body does regeneration.

Non-REM Sleep
The period of non-REM sleep (NREM) is comprised of Stages 1 through 4 and lasts from 90-130 minutes at a time.

Stage 5 (REM)
“In the REM period (Rapid Eye Movement), breathing becomes more rapid, irregular and shallow, eyes move rapidly and limb muscles are temporarily paralyzed.

It is generally thought that REM-associated muscle paralysis is meant to keep the body from acting out the dreams that occur during this intensely cerebral stage.

Heartbeat may increase and muscles may experience occasional muscular twitches. REM usually takes place 90 minutes after falling asleep. The first period of REM typically lasts 10 minutes, with each recurring REM stage lengthening, and the final one lasting an hour. Most vivid dreaming happens during REM.”

Sleep Cycle
The five stages of sleep, occur in cycles. The first cycle, which ends after the first REM stage, usually lasts 100 minutes.
Each subsequent cycle lasts longer, as its respective REM stage extends. A person may complete five cycles in a typical nights sleep.

Now mind you, this is NORMAL sleep, however that tends to happen to us is that during the delta wave point, stages three and four, alpaha or theta waves, intrude, forcing the person back to a nearly awake state.

“Sleep electroencephalograms of patients with fibromyalgia typically show disturbance of non-rapid eye movement (REM) sleep by intrusions of alpha waves and infrequent progression to Stage 3 and Stage 4 sleep. “

So the stages of 3 and 4, the deepest sleep one would normally get, just don’t happen that much for us for one and what we do get is broken up to the point, to where it is nearly useless.

Then of course you have to toss in the idea of Insomnia:

“Trouble falling asleep or staying asleep on a regular basis with no apparent cause; un-refreshing sleep despite the ample opportunity to sleep”

Which doesn’t take the concept nearly far enough. As it fails to mention the fact, that a persons level of tiredness, has nothing whatsoever to do with their ability to get to sleep or stay asleep. We with FM generally do not fall asleep, as most people understand the word, we basically pass out. when the body has just flat run out of any more juice to run on.

Now, if all of those hours we spent awake, were productive time, it would not be so bad, I guess, but it is not. They are hours spent, with a fogged mind, a stumbling body, most often in pain and we could not think a cogent thought, if you paid us to.

Welcome to my world..


BB
Esta