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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.

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.

FM and Exercise, facts and fallacies. Why the wrong way, does more harm than good


We with FM are told, repeatedly and without fail, that we need to exercise. Nor would any reasonable person disagree that moderate fitness requires a certain amount of exercise, for over all health. However … what is most often not said is the proper way to go about that. As the wrong kind of exercise is not only not helpful, it can be downright damaging.

The work hardening and strength training programs that are commonly recommended, can literally cripple a person with FM. Allow me to explain why …

Most of us have, CMP  (on site link), which creates Trigger points or Trps, on the muscles themselves. Not only are they in pain, they are also compromised and weak. You literally cannot strengthen a muscle with Trps. Any attempt to do so, in the incorrect fashion, can permanently damage the muscles themselves, unless the CMP itself is treated correctly. If this is not done what you have is..

“… muscle is already contracted and tight. Strengthening exercises and repetition exercises will worsen the TrP, and may cause the development of satellite and secondary TrPs. Some of the latter patients did not have full-blown CMP when they started the inappropriate therapies, but were disabled by the time they finished or dropped out of the training. “The Facts, on site. So treatment, if you can find a doctor who knows how, of any TrP’s is a must.

Even if lacking in treatment, just being aware that they are there and acting accordingly with regard to exercise types, can be helpful.

So, we have on one hand, doctors recommending exercise, yet on the other hand, a largely unrecognized issue of exactly how this should be accomplished


OK, why do doctors recommend it ?

Fairly simple, in persons with a normal functional system, exercise … even of the cardiovascular type, is directly beneficial. 

What occurs in a normal person due to exercise of the cardiovascular type:

Increase in temperature
Increase in cortisol production
Increase in growth hormone production
Increase in catecholamines (norepinephrine and epinephrine)
Increase in cerebral blood flow
Improved mood
Lessened perception of pain
Improved sleep

What happens in a person with FM doing the same cardiovascular type:

Decrease in temperature
Decrease in cortisol production
Decrease in growth hormone production
Decrease in catecholamines (norepinephrine and epinephrine)
Decrease in cerebral blood flow
Decline of mood
Heightened perception of pain
Disruption of sleep

In short, you get the exact opposite of what one would expect to find and furthermore, even those who are able to improve basic over all aerobic fitness,doing the typically recommenced exercises, find no improvement in their FM.

“No association was noted between improvement in aerobic fitness, as measured by VT, and the improvement of pain, function, or scores … aerobic exercise is beneficial to patients with FM overall, but the possible cardiorespiratory fitness gain is not related to any notable improvement of FM symptoms.”

Other recommendations:

It is common to suggest stretching  and flexibility exercises, but here again some factors need to be take into account. Over 81% of persons with FM, have what is called, Joint Hypermobility ( Joint and tendon issues, on site  ) For example, during stretching exercise, it is common for those of us with FM to over extend and therefore injure the joint. This is possibly due to hyper flexibility. The overlap of these two conditions is so high, they are treated almost identically.


So, what should we be doing ? 

Any movement, is exercise. Understand, that if you have been sedentary, even just walking across the room, is exercise. Rotating your arms, shoulders, feet etc., while seated, is exercise. In short, any move you do on purpose, can be exercise. 

It is not about special clothes, or weight sets, or going to the gym. It’s about moving the body in a controlled fashion. The more you can soothe the tension in the muscles and joints, by and large, the less they will hurt. Simply because they are not tensed up and clenched. Soothing them out also allows them to have greater blood flow and fluids, so they can heal themselves better of the damage that is done to them, by being constantly clenched in pain. 

Water exercise:

And no I don’t just mean in a hot tub or heated pool ( but if there is one handy, all the better ) I mean in the bathtub in your house, slow moves in the shower. Working out just hands or feet, in a bucket of warm water, if that is as close as you can get. 

( The recommended temperature is at least 91 degrees or higher. It is not recommended you try such a work out in cold water, as the cold makes the muscles and joints, tense up, which is counter productive to what you intend. Swimming is good exercise, but it is not the kind of pain reducing exercise we need, unless it’s in a heated pool )

Ok, now, why in water ? Simple, the water is warm, which loosens the tension in the muscles and joints for one and for two, buoyancy. The normal human body floats in water, so a lot of the weight is supported all the way around. And more, even simple, easy movements, with water as resistance, is more exercise than in the air. 

Just to get in the pool and walk, just walk, will work out muscles all over your body. When I had access to a hot tub by the pool at my apartment complex, I was in much much better shape, as I was in it almost daily. 

But even small movements, while in an ordinary tub is of good benefit, with a lot less of the strain and pain we often experience. The water helps prevent the hyper extension, due to the waters resistance, so it’s very difficult, unless you are really pushing it hard to over extend the joints and do them injury. 

Keep your water work outs short. You are using a lot more energy than you realize in the water and can wear yourself out in short order. So pay attention to your fatigue levels.

Tai chi:

This form of exercise is the ultimate in low impact, for the simple reason it is all about sifting your own body weight and slow full range of movement. Done properly, Tai chi causes no impact strain. As well as, it can be done in a minimum of space and can be done, by just about anybody. There are lots and lots of videos and books out there on it and I highly recommend you find a few and read them. 

This form can keep you flexible and reduce muscle and joint tension. The low, slow compression, is also a perfect means to feed the joints and cartilage between the bones and joints. 

Cartilage feeds by compression. If the joint is not moved, there is no compression, so it does not get fresh fluid flow and like any joint, no lubricate means, it’s stiff. Neglect this for long enough and the cartilage can literally dry out and die. The slow moves of Tai chi, do the compression gently, with lots of time for the fluid to flow in and out of the joint.

If you are not up to doing it standing up, then do so sitting down, moving just your arms, shoulders, rib cage, neck etc. and work your way up to where you can get the rest of the body, into the game. If you can only do so, for a few moments, fine. Do that few minutes, for as long as needed, until you can work your way up to longer time frames  Your body did not get into the shape it’s in, in a day and it will take time to work its way back out of its current state. Make haste, slowly, or you will undo all the good you might obtain.

Problems with most exercise routines:

The problem, with most “exercise” routines  is: One, they are often the wrong kind, which cause more pain, for no gain. Two: They tend to be too much, and too often. We are not your average person, our bodies are not average, so there is no reason to expect YOUR exercise routine to be the same as your average non FMer.

Realize, this is the goal most often set by doctors and even most therapists. They are used to working with people who have otherwise healthy muscles, who have had an injury they are trying to recover from. Most simply cannot accept, that by and large WE do not respond the same way to most exercise, as other people.

Most of them are not geared to dealing with anyone who has the kind of limitations we have, so honestly, your best bet, is to go it alone, at your own pace and your own time frame. Rest when you need to. Remember the idea of push crash ( on site ) the object is to improve your flexibility and reduce pain, not increase it by working yourself into a flare. Give yourself extra rest time after your work outs, you have expended energy and you need to recoup that.

Will this cure FM ?

Lots of argument on that but over all, the answer is … NO. Will it help ? Yes, for the simple reason of “use it or lose it”, if you do not use a muscle or joint, it atrophies and if that goes on long enough, you can damage it to the point where it cannot recover. 

Is it a challenge ? You bet .. Will it hurt ? Very likely it will increase pain … for a while. But done right, slowly, without strain and stress, you can improve the over all functionality of the body and reduce an already high body stress level. 

Do not expect your FM will go away for doing this. Anyone who tells you that is .. lets be nice .. mis-informed ! I will forgo what I would rather say 🙂 But, can you reduce some of the body stress and therefore the pain with the right kind of exercise ? Yes, it’s been proven you can, but ONLY if it’s the right kind and done the right way. Anything else …  and you can do damage you might not be able to undo… so go slowly, listen to your body … pay attention to the signals it’s giving you. YOU and only you can listen to the things your body is saying and know what works for you.

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.

Stages of Grief and FM


FM, like any other major illness, can strike hard. Your life has been changed, by something that is outside of your direct control. FM, in this respect, is no different than if you suffered a major accident and came away with a disability. You will experience the same stages of grief as one does, when you lose a loved one.

These stages must be dealt with. When people suggest to you to “think positive” or ” just stop thinking about it and you will feel better” or the worst one, tell you to  “look on the bright side,” or any one of 100’s of other ways of trying to get you to deny these feelings … ignore them. As the longer you deny the feelings, the longer it will take for acceptance to take place. So don’t let someone try and “jolly” you along, as the sooner you face it and work your way through these perfectly normal feelings, the better off you will be. Just knowing that they are normal, can be a huge help, which is why this page is here.


As with any serious loss, there many stages we go through:

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 the 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 where we look forward and move onward.


Shock:

Is generally short lived and will phase out on it’s own.

Denial:

Is an almost automatic reaction. It’s like a built in safety device, until your mind can deal with the idea.

For someone just diagnosed with FM this means, you will tend to try and pretend it’s not there and just go about your daily life, in a “normal” fashion. Which, generally speaking, for anyone with a serious case of FM, is impossible … which you will quickly discover.

Anger:

All of us feel this one. You might get mad at your doctor, for telling you about it. You can get angry at your own body for its betrayal. Anger at others who don’t understand or just don’t get it, is almost a constant. This stage can last for a long time or a short time, but end it must, as a major event, as it’s not helping you. As anger is stressful and any added stress just makes matters worse. But expect it and know you can get over this phase.

Bargaining:

This is when you grasp at straws, the unproven medications, the “try anything” approach, sometimes with disastrous results. This is the point when you would spend any amount of money or put up with any procedure, no matter how outlandish, if it would just make this go away ! So don’t be too surprised at yourself, if you find that you are looking at the most recent “cure” with almost longing eyes. 

Grief or depression:

Once all of that doesn’t work, then comes depression or real grief. This the stage that is the most dangerous, for the simple reason that it can become self perpetuating. But, understand, it’s perfectly normal to feel this way for a while. You almost have to mourn the loss of the life you had and learn to deal with your reality as it now stands. However, you cannot allow this feeling to force you into isolation and withdrawal. If needed, get help for this stage, professionally and medically, if required.

Testing stage: 

By this point, we are ready to look reality in the face and have armed ourselves with a bit more knowledge, to where we can make reasonable choices in our own care. We are ready to honestly test and try more realistic approaches. This is the point when you learn, read, study and put into practice, things that will help you.

Acceptance:

This is where you come to realize, things are as they are and start to look at our lives in terms of … what can we do, not what we cannot, but what we can and then proceed to go out and do it.


This is not a series that you do once and never again, as you will tend to do this same grouping, on a smaller scale over and over. The process is much the same as learning to handle the death of a loved one.

In our history, we used to allow women to live in “Widows weeds” for a year. A woman wore black and a veil for at least a year and was not expected to handle anything of any major aspect, until that year was over. They were given extra consideration and support for that period of time. This was a wise idea, that has unfortunately fallen by the wayside. 

As we fully expect those who have suffered losses, in this case physical ones, to jump right back into life, as soon as they are medically recovered. In our case however, we never “recover” in that sense, as it’s on going. But, as with dealing with a death, it does get easier as time goes on.

Which is where support comes in.


Support groups:

It’s a thing we must have, a circle of friends, understanding spouses and or family members. Our forum was created for just this reason, to provide a support group. ( Give me time to reply to any new post as I am an FMer too )

Now, you will hear of those who say that support groups are the bane of any chronic illness. Do not even remotely listen to such people. There are those, who honestly believe that a mutual support group, is no more than a pity party that will make matters worse for you, not better. They could not be more wrong. A good support group is what keeps you sane, on top of it and working towards improvement. 

The key word here is a “good” support group. If the group you find, just tends to sit around and grouse and moan 24/7, then they are not a good support group. Once in a while if they need to vent, that’s fine, but if venting is all there is going on… this is not helpful. Solutions and suggestions, to surmount the problems they are venting about, those are helpful. It might take a bit of  trial and error to find a group that is helpful to you, but it can be done.


Your spouse or family:

These are your key players. What equals a good support group  in this case ? For your spouse, it means full participation. It is not enough that they believe you and or that they take over the lions share of the financial burdens etc. They need to be part of the solution. 

They need to go with you to your doctor perhaps or attend meetings with your local group. To be part of your exercise program, help you to keep track of your logs and record keeping, your medications, etc. A spouse who is part of the process is better informed and furthermore, these acts also give them the gratification of knowing they are helping you as best they can.

Facts are facts, during the long diagnostic process many a person has found themselves alone. As the mate, who is not part of the process, has gotten fed up with it all and cut and run. Some 75% of such relationships, end in divorce. So for the 25% that hang in there, they need to be part of the process, it’s a must do.

A mate who is not part of the process is, to be very blunt generally part of the problem. As they have left you entirely alone to deal with all of these things, by yourself. And further, since they do not understand what FM is all about, they often make demands of us that we are unable to meet.

Most of us have had to deal with, at some point, the idea of going to work or school for the day, struggling with our jobs, our boss etc. Only to come home to a mate who is complaining because we are too tried to make dinner, or that we had to let the housework slide, or that we have been avoiding sex. The kids might be ragging again because they had to cancel yet another event, as we didn’t feel up to it. Or because we have asked them to take on more responsibility.

It doesn’t take long to become majorly depressed in such a situation, the why … is fairly easy to see. As we are not only having to deal with the illness, we are having to deal with a family who may not be helping matters, by their expecation that everything remain the same. This does not pertain to just your immediate family, it is also for your extended family. For the simple reason, can you say a nightmare at every family gathering if they do not get it.. either ?

Extended Family: Educate them, help them to understand. Take them with you to your doctors appointments and have the doctor tell them what it is all about,  whatever it takes. 

The people who do the worst with FM, are those who are alone, with no support group of any sort. If you cannot convince your extended family members, then you might just do well to limit contact with them. The reason is simple, it doesn’t help you one bit if you are constantly having to battle your in-laws, for acceptance. 

This can be a great loss and hard to handle. However, understand that just because they are related by blood or marriage, doesn’t mean you have to deal with whatever they care to dish out. If what they are creating in your life is more negative than positive, there is no reason you should have to tolerate that, just because they are kin.

The same is true of friends, some will be able to adjust, some won’t. Those who cannot and demand that we behave just as we did before, regardless of the strain this creates for us, is … quite frankly, in my personal opinion … not really a good friend. As a good friend would understand and make allowances. So, this can be yet another loss, the loss of some of our friends.

Friends and fellow FMers:

Blunt fact is, no one is going to really understand how you are doing or how you feel, other than another FMer. We are FMily, as its said, as we, above all, do honestly understand and can relate. Not only that, we have tried things that perhaps you have not, so you can gain from our hands on experiences

Start your own support group:

If there is not a group handy, start your own. It can be a simple affair, meet at a local coffee shop perhaps, and share information. Join an online group, or make one 🙂 there are lots of us out there and with a little bit of work, you can build a net under you, for when FM makes your life a bit too complicated.

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

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