Tag Archive | Fibromyaliga

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.

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

getting off my soap box now

BB

Esta

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