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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

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Medical frustration’s continue and day to day life with FMS


Gurrr.. had to call my doctors office.. yet again yesterday. No less than 3 of my medications have to have pre authorization now ( thanks to medicaid changes) and as yet, nothing had been done on them. In fact, when I called the woman was reciting requests that had already been completed, and only one of them that had been faxed. So had to have my pharmacy re fax the entire lot.

And get this, the woman insisted that anytime something like that comes in, they get on it right away. Well, if that is the case, why do you have only one in front of you, when 3 have been sent in the last week ? 

But, the good news is, the bath chair I FINALLY got, works like a charm. It is amazing the little things, that we did not even realize were such a pain, like washing ones feet, that suddenly one can so, without having to worry about falling down. It was very relaxing in point of fact, as up to this moment, I did not quite grasp, just how tense I was in the bath, just to keep from falling out of the thing. So score one for me.

The rollenator thing, is gonna take some getting used to but I think it will serve very well, when its time to do the marathon walk about, like at my doctors office for example. I never can just sit there, as my feet have to be up. But, as my mate pointed out, I could just as easily take the rollenator, put it in front of me and use IT to prop my feet on.  🙂

The heat is still trying to murder us all, and is zapping energy like crazy. As there is only so much AC can do, to handle triple digit heat indexes. The hurricane Irene ( blessings on all in her path ) brought us just a dash of rain and a few days of slightly cooler temps for a couple days. 

Just a minor side note: Our TV went out,  for no particular good reason, but thanks to Freecycle, we were able to get a replacement in pretty fast. I am not a huge TV buff, but two things. One we pay a good deal for that aspect bundled with our phone and internet and Two, it’s the only the thing that saves me from going right up the wall some nights when I cannot sleep or the pain is too great for the wimpy PK’s my doc gives me, to handle and I desperately need a distraction.

It’s the weekend again, which means I cannot do a thing about riding herd on the grasshoppers I am trying to direct in the medical profession, so I refuse to even bother my brain about it.. at least until Monday 🙂

More soon…

BB

Esta

Avoiding FM flares


Hello all, sorry I have not posted recently. I have not fallen off the face of the planet 🙂 But have been busy and fighting off an FM flare, all at the same time. I say fighting one, as most of you with FM know, that you can feel it coming on and you do your best to stave it off.

What I call, letting the dragon sleep. It’s like we all have this huge sleeping dragon, with anger management issues, curled up somewhere,  that we hope, stays dozing away. Since no one in their right mind would walk over and kick it awake, as it’s a foul tempered beast and the first thing it would do, is take a few bites outta us, and walk all over us in the process.

So it begs the question of ” how do we stave off a flare ?”  These things and many more…..

Take the time to rest: Means just what it says, just do it and never mind the voice in the back of your head trying to tell you otherwise.

Don’t wait till the crash before you do something: As in do not wait until the last moment, before you take preventive steps.

Postpone or get rid of unneeded tasks: Just what it says, if something does NOT need your direct participation, then don’t do it.

Delegate: Again, just as it says, hand things off and  go do what you need to do, in order to avoid forced down time.

Plan things: This one might be obvious but there is nothing more energy wasting than a poorly thought out activity, no matter what it is, so get your act together here and your body will thank you.

Know the things that make you crash: We all have our personal “triggers” if you will. A great many we share in common but some, some are very one of a kind to us alone. Figure out what they are for you, and avoid them.

Acceptance: Face some facts, flares are going to happen, it’s a given, so beating yourself up for having one, is not only pointless, its a recipe for making the flare… worse, not to mention, stay longer. So do not do this to yourself.

Leave some flex room: Life doesn’t have script. If at the last moment we need to change things, based on how we feel right now.. then do it, change it. Do not just keep right on, with whatever it was, if you are not up for it, as you will pay the price, in pain.

Ditch the stress: I think this one is pretty self explanatory 🙂

Learn when to say No: Tough one for most of us, as we tend to feel guilty if we say no. But let’s again face some facts, we do not have the fund of energy we once had, period.

So we have to ration what we do have, and that often means, saying no, to a great many things. If in doubt as to what you think should be on the NO list, refer to Postpone or get rid of unneeded tasks:

Now, on my site ( see side bar for link ) you will find a more detailed, and less personal description as to what these all mean, as well as many others, but in basic.. this is how it works, this is how you work around the flare, on tip toe if need be, which is where I have been for a while. Which meant that this, my blog was one of the things that had to go on the list of…. later.

But I hope now that it is back, I can post more often, but…. one never knows 🙂

More soon

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

Known VS Unknown Environments and FMS


Known VS Unknown Environments Why we tend to stay home. Isolation or control ? I happened to hear a comment the other night on a movie about a blind man.  It was his Mother telling his new girlfriend ” do not base his ability on  what you see him do at home, in an environment he controls” And it rattled  around in my brain, until I realized, just how that applies, to us.

A large number of us, prefer to stay at home … period. To the point where  some of us, are downright agoraphobic. The line from the movie was not the  first time I had seen this effect, in action. As I recall seeing the same  effect, with those I used to teach.

I was a one on one life skills teacher for persons with Disabilities.  I noticed, that when they were at home ( once they got used to the apartment ) they seemed to do pretty well. It was when I got them outside of that  environment, that their over all state and general performance, suffered. 

Once they were used to certain stores and the like, their abilities improved,  at least in that place, but if I took them somewhere they had never been,  again, performance suffered.

So I had to ask myself, in what way does this apply to our tendency to be ” stay at homes” ? Now, it is a given that often times, we just don’t  have the energy to face the chores in the outside world, that is nothing more than fact. But how much of our reluctance, is also due to the fact  that we have NO control over that environment ?

Sensitives : For example; If here at home, it is too hot or too cold, I can walk right  over to the controls for the AC or heater, and change that. I can strip down or dress warmer, in short, I have some direct control. But what if I am out and about ?

Now, I am stuck in whatever I happen to be wearing, having to  deal with often sudden shifts in temperature ( say from the AC in the car, to out in the heat to now back in the AC in the building ) and that’s just  one aspect, the ambient temperature around us.

Light: Now I don’t know about you, but the horror of florescent lighting  is enough to drive me about bonkers. Yet, such lighting is in most public buildings, or doctors offices, so yet another thing, my body does not like, and reacts rather badly to, that I have no control over. Not to mention, we do not do very well in bright sunlight either.

Rest to action phases: Now, at home, if I need to rest, I can just stop  whatever it is I am doing on most days, and go lay on the sofa and watch  TV or read a book. I can even go take a nap if i want. When I am out ?  None of those things apply.

Smells: At home, we can to a high degree, control what we smell.  Outside and going about, we have little to no control over the major  assault on our senses from all manner of things, from the detergent  aisle at the grocery store, to the woman sitting next to us on the bus,  who bathed in her perfume. Let us not even get into the nasal assault  we suffer when walking into any doctors environment.

Noise: Now this one I know for a fact is an issue, as I wear an MP3  player around my neck with ear clamp headphones, literally everywhere I go, to block out the noise all around me as any failure to do so, and I come  home even more wiped out, than if i didn’t block it all out.  And again, in my own home, most of the time, unless the TV is on,  which is rare, the only noise is the AC running, as total quite,  is preferred. ( Which is why noisy neighbors about drive me crazy )

Desensitization or over excitation: Now some might say, we are creating our own problem, by exercising such strong control over our home environment, as it does not prepare us for the assault on the body in the outside world. And in my personal case, they might even  have a point, as in my current situation, I have almost total control over  most aspects of my home environment, but what about those of us, who have a  house full of kids, husbands, wives, pets etc ?  Granted, even they have some greater control over their personal space,  but not nearly so much as I do … yet… they suffer the same issues  as I do, when they go out and about.

So what are we really dealing with here ? A case of, we shelter ourselves  and therefore suffer more when we go out, or a case of we would suffer even more, if we did NOT control our personal environment, as then we  would have NO respite from it ? Even in most of the rules, regarding persons with disabilities,  there is always a clause stating that they should have in all cases,  where possible, the”least restrictive environment “.  

In fact, in persons with the more common disabilities, there are major  protocols in place, to reduce the distress of the shift from a controlled  to a non controlled environment. A read of the research shows clearly,  that you can find notations to health professionals, in plenty for just about everybody.. except us. Now, the more severe the disablement, the more  complex the protocols, but to my way of thinking, perhaps there needs  to be some created, for us.

For example: At the doctors office, less bright lights if you please,  which makes it a need to…. Lose the waiting around for hours in crowded noisy waiting rooms,  put us in a private room to wait, with dimmer lights Let us sit with our feet up if we need to, as for most of us the forced legs  down position for hours means, we will fall down when we go to get up. Simplified forms to fill out or have the nurse just ask the questions  and fill it out for us Bring us warmed blankets, if we have to wait, so we don’t get chilled,  as most doctors offices are like refrigerators.

Just these things alone, would make what can be a horror of pain  and distress, a typical visit to a doctors office, into something  a lot more comfortable to endure. And I think it is high time, we started asking for them.

More soon….

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