Archive | January 2013

Dealing with a person with Fibromyalgia Letter to “normal’s”

To relatives, friends and the world at large

We with Fibromyalgia have to deal with a lot in our daily lives, but one of the hardest things of all, is being misunderstood and often dis-believed, by family, friends and the world at large. This article is addressed to you.

Most such “Letters to normals” are apologetic. I have no intention of apologizing. I will assume you are reading this, as you honestly do want to understand. Therefore, the blunt facts:

First off, learn about the condition:

Do not assume you really know a thing about it, if all you have heard are the short sound bites on TV, or read a few magazine articles. The fact of the matter is, if you do not have the disorder yourself, you have absolutely no way to really compare it to anything in your own life. So if someone you care for has FM, learn, read, understand, get serious about it. But most of all, listen to them as they are your best source of information.

When you ask us questions and we are trying to explain something, honestly listen to the answers. As we find, that there are two kinds of people, those who honestly listen and those who are just waiting for us to stop talking, so they can speak their own point of view.

Such people generally, haven’t heard a word the other party said, as they were too busy preparing their own statements in their head. We tend to stop trying to explain ourselves, as far too often, what we get is someone of the second sort, who only wants to discuss it, just so they can tell us to try some treatment or other, or worse, wants to hear a symptom list, just so they can try and trivialize them. So be the one who honestly listens.

Do not invalidate them:

By this I mean, do not assume for example, that your family member just needs to push themselves a little harder, or that you need to show them a little “tough love” and act for “their own good” and thereby force them back to health. You cannot force someone back to health, all you will do is drive a major wedge between yourself and your loved one.

Do not assume they are just being lazy, or faking it to get attention either and most certainly do not make disparaging comments to them. This all too common tactic is, quite frankly, the single most devastating thing you can do. As by doing so, you dismiss or invalidate not only their suffering, but them, as a person. For example:

“You look fine to me !” (Underlying message: “You don’t look sick, therefore you must be faking it.”)

“I get tired like that too.” (Underlying message: “So, what’s the big deal? Everybody gets tired.”)

“Have you tried (a suggested treatment)?” (Underlying message: “If you don’t take this remedy, it’s your own fault that you’re still sick.”)

“But you could do it before ! ” ( Underlying message, “If you could do it before, you can do it now. Your lying when you say you can’t” )

“My Aunt had X, and all you need to do is Y” ( Underlying message. “Other people deal with such things, youare just not trying hard enough” )

“If you ignore it, it will go away” ( Underlying message. ” The only reason you have a problem, is you pay too much attention to it”)

“It is just stress !” ( Underlying message. “Everybody has stress but doesn’t get sick over it, so you are weak and you can’t handle life” )

“It’s just a syndrome” ( Underlying message. ” It’s not a “disease”, so it’s not real “)

Do not Undermine them:

Undermining comments are generally sarcastic comments, that are disguised as humor, or as caring statements. That are neither, caring, or funny, they are just harmful.

For example: To say “Good morning lazy bones” said with a smile, to the person with FM, when they get up at noon, after they finally fell asleep at dawn. When called on it, the speaking party will invariably say, ‘I was just kidding’, which is a lie, as they were not joking. They are commenting on the fact the person with FM is getting up later than is considered socially acceptable,  and are showing that they disapprove.

But, as it’s not socially acceptable to say that to someone whose ill, they make a “joke” instead. The same goes for similar sarcastic comments on housekeeping, our work status, most anything at all, where we fail to behave within expected norms, that are disguised as “humor.” Such comments increase pain, both physical and emotional. Not to mention, they are a major source of stress and hostility.

The fact of the matter is, “70% of all suicides have uncontrollable physical pain, as a contributing factor.” The suicide rate for those with FM is nine times the national average. So, adding emotional and mental stress to our lives, with such comments, is uncalled for and not any way productive or useful and … could very well cost a life. Consider well, before you speak.

 Avoid saying, “You look so good! You must be feeling better !” even if you mean well, as this invalidates our illness and our suffering. From National Invisible Chronic Illness Awareness”

How we look, has nothing at all to do with how we feel. We learn to fake normal quite well thank you. We may have worked hard to pass for normal today, just to make things more comfortable, for you, with a ton of makeup and a determined smile. We may have taken pain killers before coming to the social event, so we can walk and move with some semblance of normality. Actions for which we will pay for in pain later. So don’t assume we have gotten better, unless WE tell you so.

Learn to deal with unpredictability:

FM is not predictable. What your loved one could do today, they might not be able to do tomorrow. Being able to stand for twenty minutes, does not translate, into being able to do it for a hour. And just because we were able to do something this morning, does not mean we will be able to repeat it tonight.

Plans might have to be altered or dropped entirely, often at the last moment, regardless of how well they seemed a few hours ago. This is not something that is under the persons control. You have to learn to be flexible and not take such disappointments, personally.

Do not try and give “advice”:

By this I mean, do not try and “fix” things or suggest cures. We need you to be what you are, our friends, our mates, our family… not pseudo doctors.

It is not that we don’t want to get better, but we have learned not to grasp at straws. Shoving the most recent article under our nose every time we turn around just says to us, that you expect us to “try” this. We likely will not, since it is A: not yet proven to work by any reasonable trials or B: has been tried ( either by ourselves or a significant number of others ) and it’s already known it does not work.

Understand, most of us are hard core researchers of the “news” as believe me, we want a way that works, even more than you do. But, hard experience has taught us, not to just try every new theory that comes down the pipe. The failure rate is high and often creates more problems, than the suggested treatment resolves. There is a world wide network of FMers and we do share information, lots of it. So if there is something that works ( or fails ), we tend to hear about it a lot sooner than you will. So if we tell you that X treatment doesn’t work for us, believe us.

The so called “Testimonials” from people who have been “cured” are generally sales pitches from snake oil salesmen, who just want to sell us a product and make money off of our pain. Such loathsome creatures come out of the woodwork, for almost any chronic illness. So please don’t bring these up. It is just an annoyance.

Changes in your relationships:

High energy, long duration things, might have to be swapped out for low energy, shorter duration events. Those of us with FM, just do not have the endurance for long walks, or going hiking, doing major bike rides, traveling, etc. If these things were the recreation of choice, you may have to learn some new ones to share with your loved one. This includes sexual activity, where new ways and means, may have to be learned.

Expect to carry a larger load of the physical tasks, such as housework, shopping, child care etc. This can be on occasion, or even permanently, dependent on how severe their FM is, as it varies from person to person and day by day.

Learn patience: There are a lot of adjustments that have to be made in learning to live with a chronic illness. This is very stressful, especially at first. Expect a certain amount of emotional upheaval, and sudden mood changes on your partners part.

Avoid comparisons: Meaning, do not bemoan what “used” to be, not to them and not to yourself. It is counter productive, as it will not help you learn to live with life, as it is now.

Expect financial changes: One of the major adjustments in our lives, is often our lack of being able to keep or maintain gainful employment. Therefore, the larger share of such burdens, will fall to other family members, mates, or the social system and often a combination of all three. No one knows better than ourselves, how hard this loss of independence can be.

We did not ask for this situation, our dreams and goals, as well as our ability to care for our own financial needs, has been undermined by something outside of our control. Adding guilt to this already painful mix, is not only counter productive, it is needlessly cruel, to us and to yourself.

The need to make assurances that your staying: The fear of abandonment, is very real. With good reason. Over 75% of marriages and other unions, dissolve as a result of a major injury or chronic illness, that was not present, in the start of the relationship. Given how often this event does indeed happen, abandonment is not an unreasonable fear, so you need to make assurances and make them often.

If you are the care giver, take care of yourself:

You cannot help them, if you are not in good shape yourself. It’s perfectly understandable and natural to feel “disappointed, impatient, guilty, frustrated, helpless, and cheated.” at times. Your own expectations of life, have been forced to undergo a change, as they have for your loved ones. Realize, that you might be called upon to make changes and sacrifices. But, in the process, take care of your own health. Manage the stress, with professional help if need be. Maintain your contacts, your social life, even if your loved one cannot always join you. “There’s a difference between caring and doing. Be open to technologies and ideas, that promote your loved one’s independence.”

© 2013 all rights reserved

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
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

Fibromyalgia and “You look fine”, and why that is a lie

The face of Fibromyalgia

We with FM, often hear this, “you look fine” and what they mean by that, is that you look healthy. Now, I question this whole idea.

I recall seeing one of the first commercials for Fibromyalgia drugs on TV. Where they used a real live family to present it. And the woman was saying, while I may look normal … so on and so on. However, I recall how she looked ! She had to be a real person with FM, as to my eyes, she did not look fine, at all !

I recall seeing her sitting there, with her family all around and I will be blunt and say that she looked like eight miles of bad road. In other words, she looked like one of us. Now since then, I notice that they have stopped doing that. They are all actors now for the commercials, who do look perfectly normal.( No major surprise, since they are healthy people )

I guess they realized that showing what one of us really looks like, was not a good poster child for their newest drugs. But I kept asking myself, are they all blind ? Does no one but me see this woman and see the same suffering individual, as I do ?

I have a mirror and I still have eyes to see with ( even if some days they don’t work very well ) and I can see that I do not look fine, at all. In fact, some days I look like dead warmed over. My skin, my hair, the look in my eyes, the set of my body, how I move, none of it, is “normal” or looks at all fine, by any reasonable definition of the word. Which by the way is a noun, that with regard to ones health means “Being in a state of satisfactory health”

Well, we are most certainly not in a satisfactory state of health, so why does everyone, from our Doctors, to our families try and tell us, that we look fine ? In the case of our doctors, is it just that we do not show the typical signs of “illness” ? What are they anyway ?

Well, unless you are looking for the visible signs of a given disease, don’t bother trying to look them up, as you will not find them as a general item. To find them for FM, the visible signs anyway, I had to look all over the place.

And perhaps that is the problem. That doctors do not yet understand, the “face” of Fibromyalgia. Most of us know it quite well, we see it every time we look in the mirror, every time we look at our skin, nails or hair. In fact, we can just about pinpoint another FMer, just based on how they look or move. But I guess our Doctors are blind to this, at least for now.

Our families can be cut a little slack on this, as these changes did not happen over night. So what they see, has happened as a gradual change in how we look to their eyes, which might appear “normal.” Unless of course they think back to how we looked, before FM hit. Then they might realize, just how much has changed.

For example: When I was younger, I was blessed with a face that made people think I was much younger than I really was. Even at past 40, I had a hard time making people believe it, they had me pegged for my 30’s, at most.

In less than 10 years, that is totally in reverse, I am 56 now and even my doctor made the mistake of thinking I was much older, just based on how I look. I could tell people I was 65 or older, and they would believe me. Hell, I would believe me ! I have two sisters, both older than myself and I look older than both of them. I look, in point of fact, almost as old as my Mother.

Now a bit of that, is the fact that I let my hair go gray ( something neither of my sisters will do, as they dye their hair, like it was a religious obligation ) but I honestly think, that even if I did dye it again, it would make little difference, in how I look. In fact, I think it would be worse. It would be like the 70something year olds you see, with bright dyed hair. It looks a bit silly to me.

But, hair color not withstanding, it is how we all look in general, like men and women who have aged, almost overnight it seems and we always look tired. Well, no surprise there, we usually are !

So what does the “face” of Fibromyalgia, look like ?

Now, just taking the signs that you can see, with your own eyes, or hear as the case maybe, ( which by the way means, so can anyone else hear or see them ) without going into the reasons why we have them, those visible signs, look like so:

Rashes, with no identifiable allergen

Hives, for no reason

Red blotches, without having Lupus

Tiny bumps or blisters on the skin

Eczema = a group of medical conditions that cause the skin to become inflamed or irritated

Seborrhoeic dermatitis = an inflammatory skin disorder affecting the scalp, face, and trunk, presents with scaly, flaky, itchy, red skin

Psoriasis = chronic skin condition, causes skin cells to grow too quickly. Symptoms include thick white, silvery, or red patches of skin, inflammation, and flaking skin.

Neurodermatitis = is a skin condition characterized by chronic itching or scaling, the skin can take on a leather like look
Mottled skin: Uneven complexion, gray looking skin, premature wrinkling of the skin

Tissue overgrowth ( ingrown hairs, heavy and splitting cuticles, splits along the edges of the hands, fingers, heels, feet and toes)

Liver spots Although liver spots are generally harmless, there is a danger that they can give rise to melanomas

Keratois = Actinic keratoses are precancerous lesions on the skin, marked by an overgrowth of layers of horny skin. They look like a barnacle, they often itch and will bleed if ripped off, and they are very visible.

Nails that are brittle, ridged, have moons, are thin and often easily broken

Hair often falls out prematurely or sheds excessively

Hair that is either excessively dry or oily

Chronic split ends on the hair

Hair that fails to grow, or grows slowly when cut

Reddening of the eyes

Frequent crusts at the corners of the eyes

Drooping of the eyelids

Fatty deposits on the eyelids

Pale eye lids

Facial tics

Tremor or trembling, especially purpose tremor = meaning when you go to do something, your hand shakes

Chronic Flu like signs, cough, nasal problems, hoarse voice, without having an infection

Staggering gait

Difficultly rising or sitting down

Frequent falls or trips

Slumped posture

Excess belly fat

Bloated abdomen

Aphthous ulcers (canker sores)

Difficulty moving the mouth to speak

Slowed speech

Stuttering; stammering, or slurred speech

Forgotten or confused words

Colorless lips

Shortness of breath

Handwriting difficulties

We drop things, often

Constant shifts in position

Sudden napping

Are easily confused

Abnormal sleeping patterns

Now, there is more, but I think I have made it clear that anyone, from our Doctors on down, who are paying the least bit of attention to what is in front of their face, can see with their own eyes, that NO, we do not look fine… thank you very much !

Now, the reasons for all of the above are many, that are covered in the other articles, (on site link), but I just wanted to take a moment and ask the world in general, how can you NOT see all of this ? How can you look at us and say, we look normal ? That we look fine ? Well if all of the above, is “fine” then I think a goodly portion of the people out there who say such a thing, have a very warped definition of the word.

© 2013 all rights reserved

Known VS Unknown Environments and FM

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 with FM.

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, granted, 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….

© 2013 all rights reserved