Coping With A Fibro Flare

Things are going pretty well, considering you have fibromyalgia. Then out of the blue it suddenly hits – the dreaded flare. And you wonder, what could have caused this to happen?

Maybe it was the extra gardening you did on the day you were feeling so energetic. Maybe it was that awful visit from the difficult relative that had you so totally on edge. Maybe it was the caffeine in something you drank or ate. Or maybe it happened for no reason at all. When a flare hits, often all you know is that the pain dial’s turned up to ten: Suddenly fibromyalgia is ruling your world.

Whatever the underlying cause, when a fibromyalgia flare occurs, it’s best to be prepared. While the following coping techniques may not make the pain go away 100 percent, they might just make managing it a bit easier.

When a flare is upon you, experts say you need to:

Give Yourself A Break

As Murphy’s Law predicts, flares often strike at the worst possible times. But no matter what you have going on or how important it is, if you try to push through the pain, you’ll pay for it. Try to cut yourself some slack instead; ask for help from others, extend deadlines if possible, and take care of your flare first. Do all you can to set your stress level to “low” when your fibromyalgia kicks up.

Just Say NO

When a flare hits, protecting your personal boundaries becomes even more critical. No, you can’t take on an extra project at work. No, you can’t make 120 cookies for the bake sale. No, you can’t babysit the neighbor’s kids. A firm but polite refusal, minus any explanations or excuses, puts you in control of your schedule and gives you room to say “yes” to what your body needs.

Get Your Z’s

Experts at the Mayo Clinic suspect that sleep, or the lack of it, plays a key role in fibromyalgia symptoms. This makes adequate rest especially important when your fibromyalgia symptoms increase. Getting eight hours or more of rest has to be a top priority. Try to go to bed and get up at the same time each day to help reset your body’s sleep cycle. Consider adding a short nap (even ten minutes can make a big difference) to your day, if possible. One caveat: Don’t nap so much during the day that you’re unable to sleep at night.

Play Mind Games

Biofeedback, deep breathing, meditation, self-hypnosis, or even just distracting yourself with a good book or some soothing music can help take your mind off the pain and make coping with a flare more manageable, say experts at the National Fibromyalgia Association.

Pace Yourself

Mayo Clinic researchers have found that people with fibromyalgia who keep going, but at a slower pace, weather a flare better than those who put a halt to activity altogether. You need to know your limits and listen to your body. Remember, slow and steady wins the race. Same goes for exercise. Gentle stretching, a leisurely walk, or some easy yoga moves can keep you moving enough to help reduce the pain.

Medicate Proactively

Following your medication schedule as prescribed can help you get pain under control and keep it there. During a flare, it’s better to take your pain medication like clockwork – even if you feel as if the last dose is still working – rather than waiting for pain to return full force before taking the next dose. At the same time, resist the temptation to double up on meds or play pharmacist: Both over-the-counter and prescription pain medications taken at levels just slightly above the recommended dose can cause serious side effects, including liver or kidney failure. And some medications (including herbal remedies) can be dangerous when combined. If your meds aren’t cutting it, call your doctor and ask for advice or some additional treatment options.

Consider Your Alternatives

When it comes to managing a chronic condition like fibromyalgia, Western medicine may not be the only path to take, say the experts at the National Fibromyalgia Association. Acupuncture, chiropractic care, massage, biofeedback, and other therapies sometimes help bring pain relief to those who aren’t finding it through conventional means. Check out providers carefully, ask for recommendations, make sure they’re familiar with the special needs of those with fibromyalgia, and keep your primary-care doctor in the loop about what alternative approaches you’re considering.

Drink Water

Critical to all of your body’s cellular functions, water is nature’s perfect health drink. Drinking eight to ten glasses per day will keep your body well hydrated and aid your kidneys and liver in their important tasks of ridding your body of toxins. Being properly hydrated also helps alleviate fatigue and aids your body in properly processing medications. Just be sure to avoid alcohol, soda pop, caffeinated beverages, energy drinks, and artificially sweetened beverages: They won’t hydrate your body properly and may increase the intensity of a flare.

Talk About It

Coping with a chronic illness can be isolating, leading to depression, anxiety, and other problems. Reach out to others for support and encouragement when pain levels rise. Sometimes just talking about how you’re feeling with people who understand and care can help take the intensity out of a fibromyalgia flare.

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How To Explain Fibromyalgia To Family and Friends

If you have FM you probably are like me and truly dread the question “What is fibromyalgia”.  Then, when you do try to explain it ever get “the look”?  You know, the one where you can tell they don’t believe you or they don’t even believe it’s even real?

Explaining fibromyalgia is very difficult without being overly technical or complicated.  If you, like myself have had this condition for sometime by this point you know all about trigger points, neurotransmitters, stages of sleep and patterns, myofascial syndrome, SSRI’s , and so on and so on.  We forget how complex this knowledge is to people that have no understanding, that is, until you see their “deer caught in headlight look” and their eyes just glaze right on over shortly into your conversation.  At that point, I am like, ok then and change the subject with a blow off of “I know it’s crazy huh, hey, how are the kids doing?”

As a general rule, anyone listening to what we are saying or reading something you sent them via email are to say the least a wee bit skeptical and some really just don’t want to take the time to understand something that is so complicated and confusing such as this illness.

I found this article that I hope will shed some light on the subject on helping your family and friends have a better understanding of what goes on with you that won’t glaze their eyes over.

What’s Going On?  A Simple Explanation of Fibromyalgia.  Making Sense of a Complex Disorder, for Those Who Don’t Have It

By , Guide  Updated September 22, 2009

Fibromyalgia is a complex condition that’s difficult to understand, especially if you don’t have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.

If you’re trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don’t show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it’s a very real physical condition.

Digging through that scientific research doesn’t help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren’t exactly easy to grasp.

The goal of this article is to help you understand and relate to what’s going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you’ll find relevant medical terms with links to definitions. They’ll be helpful if you want to go beyond a basic understanding, but you don’t need to understand the terms to get through this article.

Understanding the Pain of Fibromyalgia

Imagine you’re planning a party and expecting about 20 guests. Three or four friends told you they’d come early to help you out. But they don’t show, and instead of 20 guests, you get 100. You’re overwhelmed.

That’s what’s happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.

When those pain signals reach the brain, they’re processed by something called serotonin. People with fibromyalgia, however, don’t have enough serotonin (the friends who didn’t show up to help), leaving the brain overwhelmed.

This is why people with fibromyalgia have pain in tissues that show no sign of damage. It’s not imagined pain; it’s misinterpreted sensation that the brain turns into very real pain.

Other substances in the patient’s brain amplify signals — essentially, “turning up the volume” of everything. That can include light, noise and odor on top of pain, and it can overload the brain. This can lead to confusion, fear, anxiety and panic attacks.

Understanding the Ups & Downs of Fibromyalgia

Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It’s understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.

Look at it this way: Everyone’s hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.

Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they’re not. The more things that are out of the zone, the worse they’ll feel.

Understanding Stress & Fibromyalgia

Some people think FM patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.

The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what’s happening.

People with fibromyalgia don’t have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.

Also, when we talk about “stress” we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.

Understanding the Fatigue of Fibromyalgia

Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.

Imagine being exhausted like that all day while you’re trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night’s sleep would take that feeling away.

With fibromyalgia, though, comes sleep disorders that make a good night’s sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:

Fibromyalgia In a Nutshell

A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they’re tied to very real physical causes.

Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

  • It’s NOT psychological “burn out” or depression.
  • It’s NOT laziness.
  • It’s NOT whining or malingering.
  • It IS the result of widespread dysfunction in the body and the brain that’s hard to understand, difficult to treat, and, so far, impossible to cure.

The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.

Understanding The Stages of Chronic Illness

As with any illness be it acute or chronic there are always stages that one tends to go through.   More often than not the person in crisis of a chronic illness is suffering the loss similar to a death.   Death of a former life they no longer have, death of sense of self and worth, death of hope and confidence and more.  However, as with death there comes a rebirth but it takes time to get there.  One must go through the stages in order to learn to cope with their chronic illness.  I know, I have  there myself.

Let’s take a look at the first stage:

Stage 1

Crisis – This stage can be very frantic.  The person is seriously ill and terrified.  They do not fully comprehend what is happening to them.  Physically their ability to meet the demands of daily life have decreased tremendously.  Mentally they find it severely difficult to comprehend daily life, instructions and often experience an overload of emotions.  They just do not respond like they used to.  The ill person tends to withdrawl into themselves and utilizes what energy they have in focusing on healing, getting better and the most of their energy is focusing on how to control their pain.  Confusion and disorientation sets in and the concept of “time” tends to slip away is highly common.  Panic and anxiety sets in.   Fear of being able to handle their family life, children, spouse, medical care, finances and so forth.  Taken away from the person is the ability to “handle it all” to barely handling one issue let alone dozens at a time.   Whoever the patients support system is, be it spouse, other family member, friends, will feel the stressful pressure and become anxious themselves, especially if they feel they must take on the full responsibility of picking up the slack of what the patient can no longer do.  Often the supporter will feel a sense of  “obligation” and to be highly supportive.

Strangely enough, most people perform very well under high pressure and crisis.  Sadly however, the primary person effected by the patients illness do not receive the proper support THEY need to cope.

Friends of the ill person will often respond with get well wishes, gifts, and cards.  This often is misguided and misdirected because the ill person more than not cannot appreciate their signs of affection and concern.  The patient during this stage actually will feel overwhelmed and burdened with the though of responding with proper thanks to their friends.  The best thing a friend can do is help the direct source of the patients support system such as spouse or family member in handling day to day issues of the medical system, incoming phone calls and so forth.  By friends providing support to the soul source of the patients support system that person can then focus better on their loved one.  The patient during this stage will often feel a bit of resentment to “get well wishes” simply because with the chronically ill this has no relevance in their life as with someone with an acute condition (a quick onset of an illness that does go away) does and will get well.

During crisis mode the patient can only focus on the onslaught of their physical and mental pain with only thoughts of surviving through it.  During this time the patient is engulfed in the fear of the unknown, what their future holds and all they know is their life as they knew it has been shattered.

Stage 2

Isolation – During this stage the initial on set of the illness may subside, however, they never fully are in recovery and the illness continues on.  The patient starts to realize that their illness is on going and chronic.  The thought of never having a full recovery is devastating.  This will cause the patient to become uneasy, restless and sleep is hard to come by.  They fear the outcome of their future, and it takes a major toll on the patients self image and self esteem.

During this time the patient become very anxious in dealing not only with themselves but with others around them.  This is understandable and semi justified.  Nobody but the patient can fully comprehend the devastation of their losses.  The more independent the patient is or was the harder the isolation becomes for them.  The family during the major part of the acute onset of the patients illness in stage 1 is now spent and exhausted.  They often realize the harbor some anger and resentment toward the ill person, are fearful and disgusted by the sick persons situation.  This is when severe isolation becomes prominent in both patient and family members and everyone starts to withdrawl into themselves as the realize life will not be the same.

During this stage friends tend to drop away and give up on the ill person.  Chronic illness is something that scares most people because after the initial onset friends find it too overwhelming a personal struggle with themselves to continue having contact with them.  It just takes too much of their time and energy.  This in turn devastates the patient by the apparent lack of concern shown by their trusted friends for whom they care about.  It is said “apparent” simply because more often than not the failure to contact the patient means that friends may care but don’t know how to act.  Friends also during this stage do not fully comprehend that the patient can no longer come to them for visits, gatherings and such like they used to or at all.  Friends will tell their sick friend “I miss you” yet never go to the source.  Once again this may apply to the friend not fully knowing how to respond.

The patient must ask themselves a very sticky question, especially those we talked about who were highly independent; how comfortable are you in asking for help?  This question generally shows itself during stage 2 of isolation, but actually they are part of everyday living for the greater majority of the chronically ill person.  The patient must learn to set aside being uncomfortable asking for assistance and allowing others to help them.  As with anything this take practice.  Often the ill person sees asking for help as a sign of weakness, failure and resulting in feeling guilty for even needing to ask for help.  Guilt even comes into play for the person in having an illness to begin with and negative feelings in regards to themselves surface during the isolation stage.

The isolation stage is a crucial time for communication and no blame must never play a part.  It is highly important during this stage for the patient to talk about their feelings in order to break the isolation phase.  Be prepared, for if the patient does open up to communicate for some time this will be all they can talk about and it’s the only way for them to work it out so the support system needs to be very understanding during this time.  The patient may experience even being tired of hearing themselves talk about it.

Stage 3

Anger -During this stage the ill person has been suffering severe physical and mental pain, anguish, upset, anxiety, fear, worthlessness and feeling helpless.  They all feel it being unfair, unjust, totally senseless being afflicted by their disease.  This stage often results in sheer rage in huge proportions and the patient often targets this anger towards themselves.  Suicides and suicidal attempts are often a dangerous reality during this time.  The feelings of despair are too overwhelming.

There are a couple of reasons why the patients targets themselves for these feelings.  First being it is almost impossible to be furious with fate;  there is no external opponent.  In order to provide some meaning for what has happened, many people irrationally conclude they have brought the disease upon themselves by being a failure or bad in some way or another.  The patient finds it difficult to keep clear that it is the illness that has disrupted their life.  The second reason for suicidal thoughts is that the illness breeds many feelings of helplessness, worthlessness, being a burden both physically and financially to those around them.  Chronic illness just cannot be “wished away” and their disability is a struggle each and every day.  The threat of a major recurrence or increase in symptoms may be a constant anxiety tucked away not far from their consciousness.  They often feel the underlying problem can’t be solved and believe it is their fault which results in severe unhappiness.  Sadly, the patient’s feeling of self blame is greatly reinforced by society.

Families are unable to help because they too are angry and at the patient.  Unfortunately family members may also as with friends drop off and away.  The changes in their life are directly attributed to the patient and not to the patients illness.  Even medical doctors have been known to display anger with the patient having a chronic condition they cannot cure.  Anger from a doctor directed at the patient from all sides is mentally understandable however is highly destructive to the patient.

Suicidal thoughts start worming its way into the patients mind.

Another huge problem during this stage is the family.  There is a massive amount of strain on them as well and the families who fare better are those who can understand that the sick person is not the same entity as the disease itself and they see that the whole family is in this together and are committed to coming out of it as well as possible.  Families need to seek out a support system for themselves as well so they can cope with their anxiety of what their loved ones chronic illness has brought to the table.

The stage of anger is the most hazardous to your emotional well being as the patient and the feeling of being trapped is strong.  Fear and anger bring a sense of loss and lack of control.  You can take back that control but it must be done in baby steps.  The primary reason for anger most often can’t be avoided.  This is not the time for anyone to be pointing fingers and casting blame towards oneself or others.  Placing blame does nobody any good.  The response must become “task oriented”.

Example: “Today I will do only one load of laundry, walk the length of a room, answer one email.”

Striving towards the goal(s) set, even in small doses helps subside the anger.  Trying to do things the way it was done prior to the illness is a sure fire way to set the anger off.  Patients, family, friends and others should all focus on the strengths that remain on the accomplishments that can still be achieved.

Stage 4

Reconstruction -The person afflicted with the illness may now be feeling stronger physically or have less frequent visits of their chronic illness giving them enough time to begin learning new living skills and functions.  Important decisions or new friends or other social contacts may come into play during this stage.  It is common to start to being having a sense of safety based on their new found skills.  The patients moods become lighter with more displays of being happy and the difficulties seems a bit further away.  The patient starts to learn the possibilities and limits of their illness and what can be done.  With the loss of friends or even family members along the previous stages the patient selects new friends on how well they react to the factors of their illness and even will seek out others with the same or similar condition on the basis of understanding.  This takes the pressure off the patient of having a friend who poses no demands they cannot meet.  The patient chooses wisely a friend who will not take offense of a broken luncheon date at the last minute and not take it personally that a prior engagement cannot be met due to a flare up of the person’s illness on any given time.

During this time the family of the sick person either adapts and establishes a new routine, or, it dissolves.

So, what exactly has been reconstructed anyway?  Well, you can guarantee it is not like the previous life prior to the illness.  There is however, the reconstruction of oneself as an intact human being.  The stage of reconstruction takes on many solid aspects, such as development of new found skills, hobbies, interests and such that are most important that holds great emotional value.  When how a person lived their life previously has been shattered into a million pieces by an illness, the patient fears that they may no longer be seen as a whole person ever again.  It is the renewed sense of self and image that starts the reconstruction process of the mind and body.

In most cases people do great for several weeks but as a chronic illness can do, it can flare back up or the patient is devastated by some incident causing a set back.  With each experience and trusting in their succeeding helps the patient with confidence in reconstructing their lives.  With each reprieve of their illness, the patient becomes more confident and when a set back happens while upsetting the patient now learns to find the strength to forge through it to get back to happier, new, reconstructed self.  In other words, there is light at the end of the tunnel even with set backs.  There is a life to be lived, yes, in a new way but life none-the-less and one that can be a happy one.

Stage 5

Intermittent Depression -As with stage 3 of anger where heavy depression was involved, now that things are looking brighter to the patient in stage 5, everyone is tempted to let their guard down, relax and may, therefore, be caught off guard when a significant depression rears its ugly head up again.  The freedom and happiness of the patient’s new found skills and life can give away to new feelings of total despair as the patient remembers just how simpler things were to do “back in the day” before their illness when everything was so much easier to handle pre-illness.  Nostalgia and grief may come together causing depression and discouragement.

Many people know just when to expect to run across these rough spots.  Things such as seeing their doctor who confirms their intuition that their or your condition is not approving or is worsening, appointments, dealings of having to give up driving, anniversaries of divorce or death, the specific time of the year the physical problems first occurred and the list goes on can often cause a set back of depression.  Counseling during these difficult times and set backs is recommended to help provide a new understanding of what all the feelings of loss are coming from.  With a renewed sense of understanding comes a new resilience; it does not cure or make the losses go away but gives you the tools you need to work through the depression.

With this intermittent depression a couple of feelings will surface.  The awareness of loss of function that  happens several times during the course of the day and ordinary living.  The other is the awareness of loss that brings on an image of what life would be like had the illness not occurred in the first place.  With these two combination’s depression is quite likely.  A vicious cycle if you will.)”

In this cycle a sense of self-punishing mechanism kicks in and indirectly causes the chronically ill person to self destruct in their own self worth, competence and confidence.  Thoughts of  “If only I didn’t have fibromyalgia (or other illness) I could still go hiking (or whatever activity)”.  “If only” statements are the main cause of this cycle.  They contain harsh self judgments and feelings of worthlessness.  Now, when in a happier state of mind when experiencing these feelings of loss try saying, “I really miss hiking, but at least I can take a walk today.”

When the cycle rears it’s ugly head, the soul become uneasy.  Family, friends and even doctors mistake the desperate pain of knowing one’s hopeful fantasies will not be realized for having a self pity session.  Saying things to the patient like “Just stop feeling sorry for yourself” so totally missed the pint that their illness is tragic.  it is extremely hard to have a sense of self when you’re depressed and are afraid that you will never again be of value to yourself or to others.  One of the key dangerous phrases to say to the patient during this time is, “Just snap out of it”, this will truly set them back.  Trust when I say there is nothing more in the world the ill person would like to do is just that and not feel the way they do.

Self esteem improves when the patient succeeds in gaining some independence and purpose back, whether the success is walking further that day or remembering an important event or task without being reminded.  Within this cycle, any unrealistic expectations you have for yourself can’t compete with the gratification of hard won success.  If family, friends and even the medical profession can and would appreciate the triumph in being able to struggle, you feel even more triumphant.  Those who wish you well generally make the mistake of praising a sick person for their progress without letting them know how difficult the ongoing battle against the force of their chronic disease really is.

It is normal for everyone to have periods where they are not up for any struggle in life.  However, as long as attention is paid to that struggle, getting through the day will happen.  We flounder when we set unrealistic goals, or can’t grieve for what has been lost and even cannot start each day anew.  Depression can be tackled despite the physical complications that attempt to take us down.

Depression is real and there is no shame in getting help!

Stage 6

Renewal -The feeling of sadness, your losses, never completely disappear.  Lingering about you, is a sense of regret for all things that have been lost to you.   Being proud of any achievement you accomplish is essential for retaining an active life.  If you have to use a wheelchair and you master it, that is something to be proud of.  This does not mean you have to like it, just be proud of your mastering it.  It is okay to dislike or resign yourself to the compromises you need to make to get on with your life.  Just know it is important for you to acknowledge that changes in life style and skills must be made.  Realize that your new skills will differ from before your illness and it is not the same as adjusting to illness.  This is not “giving in” or “surrendering”, consider it as self growth and creating new horizons.  Renewing oneself comes from the learning curve that shows us how to seize the moment of the present and throwing away the fear.

Discouragement breeds the feeling of being all alone and there is truth to feeling this way.  It is important to know that in many ways you are not as alone as you think.  There are people all over, maybe next door to you who have similar feelings at times.  There are also others who have the same or similar condition you have that do have comprehension of what you go through because they too are going through it.  Should disturbing thoughts wake you up in the middle of the night, just know there are others struggling with their pain.  Even if someone has the same condition as you, nobody can quite share your unique experience, but, there is a kinship and strength among us all who are no longer able-bodied.

Resources:  After the Diagnosis by Dr. JoAnn LeMaistre.