Tag Archive | insomina

Things to avoid, when you have Fibromyalgia


There many things we with FM, as a group, have discovered, that are things to avoid doing, or in some cases, eating or drinking. Mind you, most of these are what is called “anecdotal evidence”, meaning, it is generally only we with FM, that are saying so. But, enough of us have found these things to be true in life, so I present them here, take them as you will. Furthermore, we have said such things often enough, that some of them, have even been studied, and thus far, the studies seem to equal our self reports.

I do not intend to harp, as most doctors tend to, on your diet, (on site) and all that, as most research has found that to be pretty irrelevant, unless you have a food allergy, just eat a sensible diet and let it go at that. But, there are some things that many FMers world wide, have made note of, that tend to kick off a flare, as well as the “official” ones. So here they are, some things to consider. 


Aspartame: 
This is the stuff found in most diet drinks, and many other things that are artificially sweetened. It is bad news, for anyone, but it is especially bad for FMers, for all the effects it creates, as it acts like a neurotransmitter, and literally, by all accounts, destroys neurons. Nearly everyone who makes note of it, says the same thing, in that it can set off a flare, almost right now. A fast read of the research on it, will tell you why this happens, so, lack of studies or not, we with FM, know it’s a problem for us, almost universally. So, if at all possible, it is highly suggested, that you do not eat or drink anything with Aspartame in it. This will mean quite a bit of label checking, as it’s common additive.

( Update: This has been recently stuided by the way and yeah… we were right. For FM and a whole host of other dieases, aspartame, is bad news )

MSG: monosodium glutamate 
Lots of people report that they flare up after eating at their favorite Asian food restaurant. So make a point to ask that whatever they give you, has no MSG in it, just to be on the safe side.

Artificial fats: 
Yet another group, that gets a large finger pointed at it. There are a whole variety of these are on the market. Why they cause a flare is unknown, ( it is assumed it is due to the chemicals used in them ) but sufficient numbers of people report it, to merit being including here.

Air-conditioning: 
A movie theater, or restaurant, at work, at home, will often bring on an acute flare. Your muscles get chilled, and tense up, which sets up a cycle of pain, causes tension, causes pain. AC air is generally too cold and is damp to boot as many of us have arthritis as a primary. And as any arthritis sufferer can tell you, cold damp air, causes arthritic pain, which the FM, then amplifies. So if you must be or choose to be in such a place, dress for it. If you have any say over the settings, turn it up, the objective is to make the room temperature comfortable, not cold.

Static positions: 
Working in one place with arms suspended above the work surface, ( typical office or computer set up here, the same with most kitchens, factory or restaurant work etc. ) repetitive activities, and remaining in one position for a long time, be it sitting, standing, or driving.

(Move, vary it up, get up and walk, get out of the car, change what your doing to another action, so a different muscle group is used etc. and you will suffer less. )

Over exertion: 
The ever popular Push-Crash (on site ), it’s such big a deal, it has its own page.

Over stimulation: 
Too much of anything, light, noise, smells, in short, sensory overload. This means, send someone else down the detergent aisle to get the laundry soap, ban heavy chemicals ( most household cleaners, fabric softeners, and air fresheners can be culprits ) and many perfumes ( natural perfumes don’t seem to have this effect oddly enough, ergo, it’s likely a chemical reaction, to the artificial ingredients the other perfume is made of, rather than an olfactory reaction to the smell itself ). This includes things to eat or drink, like too much caffeine, or sugar, the key word is, moderation in all things.

Lights: Wear shades in the house until your eyes adjust when you get up in the morning ( no, I am not kidding, I just took to doing this recently, when I first get up, and it has cut down on the morning headaches considerably ) Noise factors, inside your own home, make some rules about it and make them stick. Outside the home, wear ear plugs if need be. Call down the cops on the noisy neighbors, whatever it takes. ( see Sensitivities on site )

Multi tasking: 
Which is a sub set of over stimulation. Trying to do too many things, at once. Do one thing at a time.

Weather changes: 
Sensitivity to cold, damp, humidity, heat, approaching storms (barometric pressure changes), temperature extremes, and change of seasons. You cannot control nature, but you can realize that you are likely to flare more often, given these conditions and take steps to try and minimize the flare by backing off of your activities.

Alcohol: 
Many report flares due to drinking even moderate amounts of alcohol. This is assumed to be due to the dehydration that tends to occur when one consumes alcohol. If you opt to drink, be certain to drink lots of normal fluids, at the same time.

Over-the-head activity: 
This can be over hand swimming, wall painting, cleaning out the cupboards … etc. In short, almost anything that puts your arms over your head repeatedly. If at all possible, avoid these actions, entirely.

Untreated Physical trauma: 
Even “minor” injury, can create a flare, so treat all injuries, even the little dings and cuts, promptly. This includes treating bruising, which we tend to get often, due the “drunken” walk many FMers have. This is when the legs, knees and hips are not holding up, or they are not getting the brains message properly, and they make us bash into things.

Untreated Infections and secondary illnesses: 
It stands to reason that if you come down with a cold, flu, have a yeast infection, etc. you are going to flare more often, so treat any secondary illness, seriously.

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Trying to get back to “normal” or at least as normal as it gets with FM


Well, things are half way back to normal in the sleep department, I say half way, as I am basically making myself get up at my usual hour, no matter if I have had enough sleep or not. Which I hate to do, but I really do not see as I have much choice here. I cannot just sleep the entire day away, when I have things to do. Warning… on a rant roll tonight, so just bear with me.

It’s already bad enough, that most nights my Mate and I, almost swap places in the bed, as I am no more than getting in it and getting half way to sleep, when he is getting out, but to miss him entirely for whole the day too ! Unacceptable. So no matter the cost, this sleep all day, has got to stop.

Even if it does mean, that half of the time my brain is fried, and my memory has gone completely to hell here. Everything that needs doing, MUST be done.. right now or it is not gonna happen. As mentally, I am running on empty here.

Now, if all that were not enough, I have a brand new issue. Does anyone else have tongue or mouth problems with FM ? For the past month and half and more now, my whole mouth feels like it’s sore. My tongue is literally cracked right down the middle, and has sores on the edges. Like I have been chewing on it, which is totally impossible, as other than to eat, ( which has been a trick lately as it hurts to eat most things right now ) I do not even wear my lower plate, I have not for years.

This is one of the issues I wanted to talk to my doctor about, you know the office that gave me an appointment, for Oct, when the last time I saw the woman, was in June ! And I told them why I wanted to see her, when I called.

And the glands under my arms hurt like all get out, every time my arms are down, you can literally see some swelling in some places. It all seems to scream some kind of immune system malfunction to me, but as to what could be creating it, or if that is even whats going on here, I have not a clue.

But such weirdness can happen with FM, as our immune system is most often going full bore, or you basically have none there is no middle ground here… and this, given all else that is going on, just might be the result of one of those times, that I really do not have much of an immune system, and the stuff showing up, is the result, but this could be something else, altogether, so I cannot just shrug it off.

Just because we have FM does not mean we cannot have something totally unrelated to it, going on too ! FM does not give us any immunity from coming down with other stuff, on top of FM. Is is hard to remember that, when FM alone brings in so many things that can go wrong here.. but any thing new, HAS to be investigated.

The back, legs and neck are still a mess and I have just about given up on the idea of a Chiropractor, as the fight to get the service, is just about too much. It doesn’t do me a whole lot of good, to add to my stress levels, just trying to fight my HMO over it, so I am gonna try for at least a PT as that, they might be more reasonable about.

Not to mention, the ears are both still acting up and still no ENT appointment.. as of yet anyway and I even put in that dang request, in writing ….well over a mt ago !

Sigh, some days, I just do not have the energy, to handle it all, and ride herd on my doctors entire medical staff, many of whom, are not doing their dang jobs !

Gonna have a word with Doc on all of that, as I am positive no one asked her if she thought she should see me sooner for all of this. The one I  seem to keep getting on the phone in her office, can barely speak English, so it’s a sure bet she doesn’t understand it all that well either !

To me, anyone who cannot speak English here in America, has no damn business answering a phone in a professional capacity ! Particularly, not in a Doctors office.

I think from now on, if I hear that voice, I will automatically ask for someone else, as I am getting dang tired of her mis-handling things, likely due to her own incomprehension of the language, both spoken and written, as she does not seem to get what shes reading, either.

Well, that’s enough whinge for one night, I am tired and need to at least lay down.. so good night all and may your rest be blessed

BB

Esta

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

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

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