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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.

The Anatomy of an FM flare


What it does to the body
The use of body resources, during a flare
and what can we do, to help ?

What happens, during the life event, we call a flare ? Well, first, let us look at it from a medical standpoint.

Flare: =”the sudden intensification of a disease.” Not saying much huh ? Alright then, it’s defiantly not enough for our purposes, so let’s look at it a bit deeper and see what it really means.

Fibromyalgia flare = Not so easy to define. As each persons experience with FM is different, ergo, their flares are going to be different, but we can try to at least list some things we all tend to have happen, during a flare.

Increase in pain
More sleep issues, often due to the pain
Deeper memory problems
Neuropathic issues
IBS is worse
GERD is worse
Blurred vision and more eye issues
Greater chest pain
TMJ issues
Profuse sweating
Irritability
Lethargy
Fatigue
Sensitives increase
and of course, the Fog got thicker, as the brain just took a hike

Now this is to name just a few … now, what do we tend to do, or moreover, can we do, during such a time ?

We of course, tend to take more of our medications, if we have any that help. We cut back on our activities, use all of the alternative means, ( heat, cold, massage etc. ) but quite honestly, the one thing we can do, that tends to help the most … is to sleep. Un-refreshing or not, sleep can be a major relief from an FM flare.

The main reason is that while we are asleep, we are making fewer demands on the body, so that it can now use the bodies resources, to tame the flare. Rather than use them all up, to try and let us do our day to day tasks, since we are up and about. Resources are finite on any given day when you have FM, but during a flare, they are almost nonexistent.

A little stroll here, through the inner workings of the body, to explain this.

What are body resources ?

Energy to rebuild, which are created by a variety of things. Lipids ( fats ), Carbs and Proteins. Most of which come from calories burned from food, which depends on a gut that is A: Processing things correctly and B: Passing the energy onto the blood stream. The O2, from the lungs which is, one hopes, passed into the blood stream, to activate all of the above. As all cells need oxygen just to live, much less to work. So, to DO anything at all, on any given day, a lot of things have to be in working order.

How we get energy from food:

“Our digestive and nervous systems facilitate the ingestion of food and contribute the enzymes that break down sugars and starches into glucose. The endocrine system contributes insulin which, along with glucose, is delivered to cell membranes via the circulatory system.

Once it is inside the cell some glucose gets converted to glycogen — a storage form of glucose — that acts as an energy reservoir. The rest is delivered to the batteries of the cell called mitochondria. Each microscopic mitochondrion contains hundreds of enzymes with highly specific tasks. As each enzyme does its work, a chemical reaction causes breaks in the chemical bonds of the glucose molecule producing a different glucose derivative until the original molecule has been fully degraded to the components from which it arose in the plant — carbon dioxide and water.

Whenever chemical bonds are broken, energy is released. The energy released as mitochondrial enzymes break up the chemical bonds in the glucose molecule that is used by the cell for two purposes. The first purpose is to do the primary business of that particular cell, whether it be movement, nerve conduction, hormone production or whatever. The second purpose is to nourish the genetic machinery of the cell (DNA), to keep its structure and function intact.”

“Carbohydrates one of the three building blocks of living things, the other two are proteins and fats …carbohydrates are broken down into very simple carbohydrates, mainly into glucose and fructose via digestive tract and then absorbed into bloodstream to cells.”

In simple language, the sun/sugar energy stored in the food we eat, is broken down and used for every cell in the body. Since we humans do not have leaves and the like, to gather this energy, directly. ( Just consider the visual on that one if we did ! It would give a whole new meaning, to getting a trim at the local hair salon. 🙂

O2 and the cells:

“Cellular processes require oxygen to burn the calories received from food. The general process that is used to transform food into energy is called respiration. This is the opposite of photosynthesis, where plants convert energy into sugar. Respiration does the reverse by changing sugar into energy.”

Which is the final breakdown at the cellular level, which swaps that energy for waste products, which we then expel via our outward breath for the carbon dioxide, the kidneys and liver handle the liquid and chemical left overs, and the solid matter is further processed by the bowels, then expelled. ( at least one hopes it is, as with IBS, one is never sure how that is going to work )

Understand however, that even on a normal day, we stand at what is called the “lactic” threshold, in our muscles. ( Which translates into, they are two cents off of total collapse, as if we were pumping iron all day ) and since our muscles comprise our major cellular mass, the body will find slim pickings in that area if it wants energy, along with, some major demands being made of the blood cells by those very same body parts.

( For which Mycoplasmic infection may well be to blame ) As according to studies on the effects of FM, the mitochondrial cells, which are the cells that contain the lipids, which make energy for muscle tissue to use, are being damaged, therefore the muscle cells themselves, are being damaged as a result.

So if the blood cells have to go hunting for energy, as the body has little to spare floating around in the blood stream, the cells of the muscles literally cannot, not even to help themselves, provide that energy. It’s like they are so tired, that food might be within reach, and they don’t even have enough energy, to lift “a cellular hand” to reach for it.

The idea of processing food correctly, is really put into question, as most of us have IBS as noted above, over 80% of us and we often stand at what is called “caloric exhaustion” at any given point, regardless of the diet we eat. So our digestive system, does not work well for energy processing either. Which is why the situation above, of there being little of free energy in the blood stream, happens in the first place.

Then of course the O2 exchange, which is vital to all of the cells in the body, is often compromised, as most of of us have shortness of breath, for a variety of reasons, from the mechanical ( the rib cage and chest muscles themselves do not move or work well and, that makes it hard to breathe ) and or have COPD or other issues. Even at a cellular level, we are shown to have poor oxidation of the cells, even when there is normal intake and exchange of air.

Which means, that even with all the air in the world to breathe, and a proper diet, the body still can be standing there, doing without, on a chronic basis. And when it is pushed too far and too hard, the signs of the disease increase and we have what is called a flare, creating an even greater demand, that the body often has little to no freely available resources, to try and fill.

That being the case, the body uses up what few resources are normally available, in very short order during a flare.

However, more is still needed just to function, so the body goes hunting for it, most often taking it from the bones, the teeth, hair, anywhere it can find things that it can convert into usable body resources, to repair the damage being done. In short, the body is basically feeding on itself during a flare.

This fact is why most of us have low density in our bones, often have poor teeth, straw like hair, thin brittle nails and damaged skin. It is also is why during such flares, every alarm bell we have, are all ringing at once. As the body is on full alert, doing some rather extraordinary things, just to try and minimize damage and allow for some functionality, but it is often stripping the body almost bare, to do it.

So the bottom line is, often the best thing we can do, to help the body along, and ease our own pain, and prevent as much damage as possible, is to feed the body as best we can and then sleep. Sleep and let the body do what it does best, which is heal what it can. Without us, making more demands on an already overtaxed system.

© 2013 all rights reserved

Medicaid is being held hostage, new insurance company


Well , here is some more busy body bureaucratic bullshit, sticking their noses into my business. Just recently I learned that Medicaid is being handled by some new insurance company. I thought, okay, I really don’t care, as long as they do not mess with my care. I spoke too soon.

As if the GI docs, messing up my insides, were not enough. As stands right now, a medication my Doc had a hissy fit over, when I did not get it last time, due to my IBS.. well it’s being held up again, not for lack of a script, as it has refills on it,  but the new insurance company has up and decided, they will not pay for it, as written, unless the Doc explains to them, why I need it twice a day, instead of once. 

Now, I ask you, since she wrote it that way to start with, does that not assume, that is how she wants it ? And up to now, Medicaid has been paying for it. My phamacy guy has faxed over a request, twice and Doc office has not been answering the phone. yet. I’ve been off a medication that already has refills, for a week now and suffering for it. ( I did not realize how well they were working, till they are not there )

Now we have to prove to some faceless bureaucratic board, that I need, what my Doc has already ordered for me ? What a damn chock… on the war path here on this one, this is the frist time and it had better be the last time they interfere, or I will have someones head.

Going to put my War paint on and sic my Doc on them while I am at it.. as she is gonna have a Cow over this one !

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

Some progress on the medical frustrations and yet another fight


Well, I finally have the chroipartocr nailed down, and approved, at least for 3 vists. My doctors office is at last, taking action on the paperwork that is needed for my durable goods. 

Almost two full mt’s of phone calls, visits, letters and aggravation later, I might finally be seeing an end to this saga. Now, with my appointment with GI to discuss what needs to be done regarding my GI issues, I fully expect another fight. As the fools did all the tests, but did absolutely nothing, with regard to even investigating the matter further.

This, unforgivably, is rather typical. Unless there is some gross issue apparently, the tests are classed as ” good” and ignored. Now, this is despite the fact that I went in for such testing to check on two things. Hemorrhoids, which have become a major problem, of which they freely admit are there but they have made no move, to do anything about them.

Coupled with the gut itself is very plainly twisted, and causes great pain and problem, yet this was also listed as “good” Now I have only one question, if all that is ” good” I would bloody well hate to see what they considered bad ! Having IBS on top of malfunction due to everything being twisted and bound up, is not fun, let me assure you.

Needless to say, I am not taking this well, as to my mind, both issues need to be addressed. In one case, it would be a simple day surgery and one hopes,  the end of the problem. But it seems they would rather leave them be, and let them do again what they have already done to me once, which was nearly bleed me out, until I was finally able to stop it, on my own.

I staved off going to ER over it, and perhaps I should not have, as then I might have had their attention. On the other issue, I repeatedly hear things like ” well surgery creates that” as if nothing can be done about it. ( Scar tissue and adhesion’s ) Which I know full well is a bogus statement, as I had such issues, from other causes before and  the surgeon was well able to remedy the problem. As what it takes, is one who gives a damn.

What I am hearing, is that they see these issues as minor and unremarkable. Never mind the fact, that both are a daily source of pain and difficulty. 

Now, the main reason for this blow off, is fairly simple. The hemorrhoids as I said, are a simple matter, but since no one SAW me bleeding every time I moved for days on end, they are basing their prognosis of “good” totally on visuals.

Even the Doctor who did the frist exam asked me, before he even attempted it ” if you have had them for years, why are you bothering to complain about them now ?” He really did ask me this. I was rather curt in my reply to say the very least.

So I can assume that he is the major drawback. He is also the same dim wit I had to have nearly a fit to get something for the pain the proceeduoe caused, in order to be allowed to leave, at all. As you were not alowed to leave, until you felt well and I certainly did not, but I had to threaten to leave AMA in order to get his attention to do anything about it.

Since he could not complete the intended prodeeure, others were ordered that clearly show the “gut twisted like a corkscrew” I was not only told this, I saw it with my own eyes. This by the way, is why the other scope process, failed.

Now, I have a pretty good idea on what has caused this and my PCP agrees, but what needs to happen is to look at the outside of the gut, in order to confirm that. Which of course, neither test, did. As in both cases, what they were looking at was the inside of the gut, with shows no blockages or polyps.

Which I guess is where the so called ” good” comes from. So its back to the fray and go at loggerheads with some medical types in a few days, to force their hand to DO something about both issues. Sigh…I am so tired of having to fight lame brains, who do not listen to what you tell them… but time will say how hard and how much I have to rattle cages, to get the matter, done.

More soon…. 

To be grateful for the little things, is a gift. FMS


Being grateful for the little things, is one of the few gifts that FM brings us. How many of us, when healthy, just take our energy and ability to accomplish things, for granted ? If having FM has done nothing else for me, it has made me realize, just how precious the ability to do anything, really is.

 FM for me, is only one, in a long list of bodily insults. I have lived with some kind of limitation or other, most of my life. I was diagnosed with arthritis for the first time, at age 16.  I had a knee blow out, at age 23, ovarian cysts, that created years of pain and debility, until a total hysterectomy at age 25. Then of course, the joys of menopause.

And so very much more but I think you get the idea, and I had learned to live with each new challenge and over all, manged to overcome, or learn to adapt to them, then FMS struck. Needless to say, while I have learned adaptations to this new insult, there is, at least not yet, no way to overcome it.

Now, I tell you all of this, not to invoke pity, but to make a point. That all of these things, can make one honestly appreciate, the days when things work, when you have energy to do most of the things you had planned, when just the simple act of reaching for something, that today, didn’t create extra pain, is something to be savored, for the gift that it is.

It is said, we never fully appreciate, the absence of pain, until something like FM hits and we never know a day, without it … again. So we savor the little things, the small victories, in a way that the healthy, can never really understand.

More soon…

BB

Esta

The need for family and social/medical support in Fibromyalgia


Last night, I just could not take sitting here at the computer, even though I have things I need to do, so I piled up on the sofa early, to watch TV. When I got up to get a drink, I found my mate had done the dishes. He has no idea how much that means to me. Support on the bad days, matters so much, and I thank all the Gods, that he “gets it”

I have lost two mates due to this curd, as they didn’t “get it”  one almost directly after being diagnosed with it. I was in shock, I was depressed, and in an almost constant flare, and he just could not deal with all the changes. We talked about me quitting work for my healths sake, and yet, when I did, everything changed. 

In short order, since I was no longer making money, I was shut out of financial decisions, then came the complaints of household work not done, etc etc. I think you can see the picture for yourself. It ended in divorce. ( statical note: over 75% of unions, dissolve when major illness or injury, enters the picture )

In short, my life, as I knew it, had just taken a major dive, no differently than if I had gotten run over by a bus and broken half my body, yet since there was no “accident” there was little to no consideration, from anyone. For any life changing illness, we go through the same stages as we do for grief, they are:

Shock stage: This is the initial paralysis, we are reeling here, as our life as we knew it, just changed.

Denial stage: Trying to deny it’s real

Anger stage: Frustrated, lashing out and generally enraged.

Bargaining stage: Almost desperation, as we try this or that medication, or procedure, with an idea in mind, if we do X we can cure this and it will go away.

Depression stage: When we finally realize, it is real, it’s not going away.

Testing stage: At this point, if we are lucky, we are looking for more realistic solutions.

Acceptance stage: The point were we look forward and move onward.

It took me over a year, to reach the testing stage, and I almost dropped myself into a full blown depression in the process, as not only was I getting little consideration from my mate, I was not getting a lot of help from my doctors either. As when I was diagnosed, FM was the ” its all in your head” send them to a shrink idea, in the minds of most doctors.

In fact, the doctor I had, at the time I got my diagnosis, the same one who had been treating me for all the various ailments, ones even he considered legitimate and provable, gave me pain killers etc. for over two years, dropped me like a hot rock when the RA doctor he sent me to, sent back a diagnosis of Fibromyaligia.

All support from him, stopped, all medications, everything. (  in fact he told me to go see  psychiatrist … just as an FYI, I got him fired from the university I was attending at the time for such treatment, but those who took his place, as soon as they read FM on the chart, were not much better as far as support ) I was entirely abandoned, by both family and the medical society.

For many years after that, I learned the hard way, how to manage it, as best I could, with often no help whatsoever. Now some signs, like IBS, that those around me then, could at least see, were given some consideration, in fact it was considered the worst issue I had, as its effects, are visible. But the rest ? No, no one really got it.

Now, thankfully, some 15 years later, most, mind I say most of that, has changed. My current doctor “gets it” and is trying, within the limits of the medical care system, to help. And, she is very understanding of my frustrations.

I finally got SSI, after over 10 years and three states of trying, as again, in the public mind FM is finally getting some recognition and a little respect from at least part of the system. But I honestly believe, that if I did not have a whole host of other issues, strokes, body-wide joint problems, spinal stenosis, bone density issues etc, that are provable at my age now. I still would not have gotten it, for FM alone.

The long story short here is, do NOT let those with FM, that you love, fight that fight, alone. As the problem is real, the issues are real, and to make them have to fight that fight all alone is courting literal insanity and yes.. even death.

Something to keep in mind, Chronic pain is at the root of 70% of all suicides. The national average is 2.9% of the population, for those of us with FM the average is 10 times that, at 29.9. So consider well, before you leave your loved one with FM, out in the cold, as you may well be condemning them, to death

More soon….

BB

Esta