Tag Archive | disorder

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.

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.

Doctors and certitudes about IBS ! Why do doc’s think they know more about us, than we do ?


Getting on my soap box to scream a bit about Doctors. I am sure I am not the only one to notice that Doctors seem to run rough shod over just about anything WE might have to say. Case in point:

Recently saw a mess of GI docs. Told them all about my gut issues and why I think they are happening. Their answer ? To put me on what amounts to 100 times as much psyllium a day as I already take ( never mind I told them that if I do too much of it.. I get cramps, diarrhea etc ) a fact I have learned via nearly 15 years of trial and error. Did the docs listen to this ? Answer.. NO.. and insisted that THEY know best.. 

Ok. fine I take the stuff and the laxative they gave me, the very frist day on it.. ( after I choked it down ) within the hour.. cramps, diarrhea  and pain..it took me over a week to get it to settle down and stop doing that.

However, since I did promise to try, I went back to the meds and cut it down.. long story short here,  and it took two weeks of misery to find out, that in order to prevent the kick off to diarrhea and more pain.. I have had to cut it down less than a 1/10 of what they want me on.  Meaning, about what I expected the stuff to have to be, in order not to kick the other reaction off, based on my personal experiences..

Mind you, I am not just cutting it down, just to prove I am right. I did it their way, they said I could adjust it if it gave me problems, and I have, as I had to. The gut is still not good, but at least not MUCH worse than normal.

Now, several things are in play here with all this. The first being their arrogance in assuming THEY and only they, know best. Well its “worked for a lot of people” just try it they say. The pills you take everyday of the same stuff, won’t work they say, as you cannot just take them and sip a little water… never mind I have always taken them as they are supposed to be, which is with plenty of water, they ASSUME  that I am like so many others who take the pills, and do not do it right. Again, did they ask me how I take them ? Answer, NO. I all but bit the docs head off for that one.

That is just more of the all too common arrogance in assuming that I.. know nothing.  Their assumption of the dosage of the stuff they gave me, is based on three meals a day + snacks. I do lucky to eat, once. twice a day, tops. I told them this, did they listen ? No. 

What makes it worst of all is.. for weeks of extra bloating, pain, cramps etc. there is NO improvment in how the gut works or the problems that drove me to seek help in the first place. Just a lot more suffering.

I told them then and will tell them again, it’s not about consistency, it’s about function. As what I went in for, is to my mind, mechanical, the gut simply cannot do the squeeze and peristalsis motion….and a fast look around with a scope, would prove it.

They keep showing me the damn xrays.. tell me that they “look” normal, since they are not seeing any gross pinches of the gut or deformities. Never mind the ones who DID the test told me the gut was “twisted like a corkscrew” but apparently that notation, did not make it to the report.

Again I tell them.. that just shows you the inside of the gut, not the outside.. which by the way.. in my opinion. is the problem and told them exactly why. ( mind you I have been through this once before with adhesion’s etc gumming up the works.. and will bet with 95% certainly. that is the case .. now ) A good 14lbs of them were removed from my gut some 20 years ago, after my ovaries had bled necrotic matter into the gut cavity for years, and the body of course, tries to encapsulate it. Note: after all that was removed, the gut worked just fine.

Now, move forward 10 years after all that was removed, and the gall badder went totally south, to the point of being black, dead and gangrenous. Which would have, of course, pumped all manner of dead and dangerous stuff into the area around the gut, I nearly died over it all, .. notice this is again the same issue that created adhesion’s the first time…. just the source changed. Again, I told them all of this.

Now, since that time. the gut has not worked right, and it’s getting worse, but it looks like I will have to beat them all over the head with my cane, to get them to do the obvious, which is take a look.

If they can prove to me, that is NOT the case, that nothing is binding the gut in anyway, then fine, I am wrong and we have to look at other options ( I have news for them, IF that is the case, if they think I will take the crap they gave every morning of my life, they got another think coming ) but at that point, I will look at other options.. 

But I do not think I am wrong and I am not going to shut up.. until and unless, they prove it to me.. I know my body, I know its history, I know how it works and moreover does not work. I have treated myself for years and have found ways that let me at least have something like a balance with the beast.. and damn them, they ARE going to listen if I have to scream ! 

getting off my soap box now

BB

Esta

Update to this: I lost over 25 lbs over this and they were appalled…. and FINALLY listened to me and a few bright ones in the group, who had not been in on the original request, flat out told the ones who did order this fiasco… that they were fools to have ordered such things for someone with IBS ( nice to know not all of them are nit wits ) and they agreed with me, that adhesion’s were likely the cause here, but… they don’t do surgery anymore to remove them, unless they are cutting off the gut. So all of this, was for nothing………..sigh

Anyone have a brain to spare ? FMS


It seems that I am no more than dragging my body outta the black hole its been in for mts, and now my brain wants to stay on vacation. Trying desperately to complete some work I have been chipping away at, as I can, for way longer than it normally takes me ( the client has been very forgiving ) and I cannot seem to get my brain to work. I had thought, ok the body is getting back with the program since the weather is not so hideous, so lets knock it out and have done. right ? Wrong.

For the first time, in a long time, this is actually frustrating.  Now some of it, is my own fault, in that I let how tedious this particular job is.. make me find reasons to put it off, now I am facing a deadline, one that I set, as it must get done, and it’s like half the information.. you know the stuff ya thought ya had all lined up and ready to go.. isn’t. I am shocked at myself as this is not like me.. hell putting off work is not like me either but I managed to do it.. for longer than even I realized.

I am wondering if perhaps some of my new medications, are behind this and if so, how do I counter it ? As one must work, and I am at risk of losing my reputation here. I think its time to do some more research on the meds I started oh about 6 mts ago.. as if they are it.. then out they go.. I do not care how much good they are doing the body.. taking my mind for such details, is not acceptable..If its not them, then I need another plan here.

Getting off my soap box.. thanks for letting me rant

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

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