All the theoretical information about Fibromyalgia you will find on this blog will not be able to give you at least a vague idea  of  what Fibrimyalgia really is. That’s why I started to "google around" to find the stories of real human beings suffering from it.

The first personal story I found was written by Dr Marc J Shaw and I copied it in here as his original. I hope to find some more people who wrote about their personal experiences with this disease and I encourage everys visitor hwo has gethered experiences too, to write their comment with links to their own story or to valuable fibromyalgia related sites.

I hope after reading all the personal stories, You, my valued visitor, will have some understanding for people in your social environment who have to live with this disease.

Kind regards

Renate Schedl

Coping Strategies

I suffered from Fibromyalgia and Chronic Fatigue for 4 years before reaching a point where I am 90% better than I was at the beginning of the illness.

I will say from the outset that I believe this is one of the worst afflictions that can strike any person, at any age and at anytime.

Not only is it so debilitating that it now has the same disability rating assigned to heart disease patients, but at the same time you have to deal with negative connotations that surround it.

Even the name doesn’t sound credible, "Chronic Fatigue Syndrome", "what is that like a bad hangover or something" people will say. At a time when you need the most support in your life, often, people are turning their backs and walking away or muttering under their breath. It is a frightful condition.

This will be a pivotal point in your life. You will find that during the course of your illness you will find out who your real friends are, and who really cares.

There is no point disguising the reality which is, I’m afraid to say, that you will lose a lot of friends and colleagues along the way to the monster that is Fibromyalgia and CFS.

It is NOT possible to explain this condition to people who have no experience of it either by having suffered, or through having a particular medical interest in the area. They WILL NOT understand what, or to what extent, you are suffering. Again, I’m afraid this is the norm. Accept it as such and you will not then be personally offended by acts of prejudice. Easier said than done I know. Let us examine a common sequence of events which may ring a bell with sufferers, to understand the prejudice from an outsider perspective.

You had a viral/ bacterial/ chemical exposure of unknown etiology, the same as happens to millions of people throughout America every day, and for some reason that no-one can explain to you, you have felt generally ill and exhausted with multiple symptoms and multi-systemic involvement ever since. Your doctor appears cynical and can’t give you an adequate diagnosis so you may by now have been referred to a psychologist for analysis as a suspected depressive incident. "hmmm okay" you hear them mutter.

Ask yourself this question.

If you had no knowledge about Fibromyalgia and CFS what would your reaction be to someone else developing these symptoms?………… You see? Its human nature, it’s cruel isn’t it?

So how do we as sufferers cope and rationalize what is happening.

Knowledge is power. Educate yourself about your condition.

Concentrate on yourself and try not to dwell morbidly over the people that you have lost already. Those that do not stand by you, and there will be some, are what we term fair-weather friends, usually activity based they were your friends due to your common interest in a certain activity, be it sport/ work etc.

The activity has gone due to your illness, therefore by association so does the friendship, this is okay because we are going to get you to a stage where you can resume the activity, you can forgive those "acquaintances" if you wish and resume the activity with them, you will also be wiser and more aware of "the type" of friendship you have with this person.

What goes around come around and what is going around is that you are going to get better!!

There is a small consolation that I allow myself, and this is the level of self-knowledge and wisdom that you will gain from this painful journey. It’s a small consolation I know and I hear most of you screaming, "it’s wisdom and knowledge I could well do without", but it is there and when you do come out the other side in the following weeks and months what you have been through will make you ten times the person you were before.

You have plumbed the depths of pain and despair and in the future you will be scaling the heights. If you come through this nothing in life will phase you again. You will value the simple things in life. You will live every day. You will scoff at the vanities and selfishness of our systems and culture.

Fibromyalgia and CFS will create emotional havoc for you and for your loved ones. This is normal.

Becoming chronically ill is very much like a bereavement. The losses and emotions involved are very similar. Giving up works means not only that you lose income but you also lose status, friendship and a purposeful role in life.

Fibromyalgia and Chronic Fatigue Syndrome encompass the full range of human emotions and magnify the negative ones ten-fold.

This disease really is a monster. The usual response is to want to hide away from the world. However, confronting these emotions can be very important as part of your psychological rehabilitation which should be addressed in conjunction with the manual therapy discussed later.

This really is an area where a healthy mind can assist a healthy body towards better recovery.

The pain that comes with Fibromyalgia and Chronic Fatigue Syndrome can be frightening and this in itself can cause fear, loneliness, isolation, panic and anxiety.

Fibromyalgia and Chronic Fatigue Syndrome can create a fear of rejection by others even when there is no evidence of this happening. I mean, who wants to be around someone who is like this, we say to ourselves.

Again this is a normal reaction, our self esteem is based on what others think of us, and usually that is based on what we "do" or "how we play" , or "what we say", generally how we interact with other people. As we take to "doing less", "playing" less and generally interacting "saying" less, then our self esteem plummets along with our health.

We are worried about the future; the dark shadow of uncertainty is round every corner. Will I ever get better? What if I don’t? How long is this going to go on? We ask these questions every day. We begin to experience life in a shadow land. Our hopes and dreams have been shattered and the road ahead can be bleak and never ending.

Anger is very common emotion - Why me? - Why now? – What have I ever done to deserve this? Unfortunately this anger alienates those we love even more.

You will find supportive people, often, and encouragingly the last people you would expect. Those who are supportive are often people, or those close to them, who have experienced serious illness and are living with it, or have come through it.

Or, those who have experienced Fibromyalgia and Chronic Fatigue Syndrome or have someone close to them who has it. These are the people you should aim to spend your limited energy resources building relationships with for the moment.

Do not feel bitter towards people who you lose at this stage, hold on while you can then just let them go lightly, they are not your problem. Fibromyalgia and Chronic Fatigue Syndrome IS your problem, and fighting it hard is your duty to yourself, to get your health back, for you and your loved ones. You are going to need the energy you have left for this fight.

I do advocate counseling and support groups. You will need to find someone who has specific knowledge about the emotional effects of Fibromyalgia and Chronic Fatigue, again a good doctor should be able to put you on the right path, there are also Fibromyalgia and CFS support groups based in most cities and towns across the US.

Once you have found a good support group you will also find good counseling.

However, the majority of cases will NOT need to see a psychologist unless you are being referred for Cognitive Behavioural Therapy, as your illness is NOT depression, and therefore you should not accept anti-depressants, with the exception of possibly low dose amitriptyline if your symptoms include severe nervous pain and sleep disturbance.

However I cannot personally vouch for this but there is enough evidence to suggest is a valid treatment.

Mental and emotional preparation, knowledge of your condition, and the correct course of treatment are all essential and work symbiotically to assist your recovery.

In my next article I will explain new research which is allowing us to determine how genetic and biomechanical anomalies, predispose certain individuals to attacks of Fibromyalgia and Chronic Fatigue Syndrome.

Dr Mark J Shaw

I just claimed my blog with Technorati

You will find my articles at Technorati too and hopefully read and comment them. Hope to find those suffering from Fibromyalgia too.

Technorati Profile

But The Pain Was There When I Asked For

The Doctor’s Appointment

Learn about the "walking pain", the impact on your daily life

Find Out Soon Who Else Doubts On Their Mind

Here I will tell about my own experiences. I guess many of you will recognise their own life here.

   What is Fibromyalgia, how common is it? 

by Renate Schedl

Medical

‘Fibromyalgia’ is a descriptive name that may change as we learn more about the condition.  Medical researchers have just begun to untangle the truths about this life-altering disease.  Medical articles refer to fibromyalgia patients as "challenging" at best, and as "difficult" and "extremely draining". 

While it is a highly prevalent condition, identified in nearly 20% of patients visiting rheumatology clinics, fibromyalgia is often confused with other pain disorders, and little is known about its root cause.  Fibromyalgia (syndrome) is a common disorder seen in rheumatology practices, and has been known under a variety of names during the years.Primary fibromyalgia, a poorly-understood chronic pain syndrome, is characterized by widespread musculoskeletal pain, nonrestorative sleep, fatigue, psychological distress, and specific regions of localized tenderness, all in the absence of otherwise apparent organic disease.  Primary sleep disorders that may be associated with FM include: alpha electro-encephalographic arousal disturbances, sleep apnea, and sleep-related periodic involuntary limb movement disorders.  Primary fibromyalgia syndrome (PFS) is a common and characteristic rheumatologic condition manifested by diffuse musculoskeletal aches, pains, and stiffness frequently modulated by various factors.

Disease

The cause or causes of FM are unknown and patients with FM show no specific pathologic changes in their musculoskeletal tissues; and there is no laboratory test diagnostic of it.  However, it is important to understand that arthritis causes inflammation and damage to the joints, muscles, or other important body tissues; fibromyalgia does not.  In the absence of objective pathology, reports of pain and other unexplained symptoms may be ascribed to psychological causes.  Although the cause or causes of FM remains to be determined, most researchers believe that the widespread pain, the hallmark symptom of FM, is due to abnormalities in central nervous system function.  It is a chronic syndrome that causes a stiff, burning pain in or near the joints, not dissimilar to the pain of arthritisWhile fibromyalgia is one of the most common diseases affecting the muscles, its cause is currently unknown.  It can occur independently, or can be associated with another disease, such as systemic lupus or rheumatoid arthritis.
Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles, or other tissues.  Even physicians do not always agree on whether a disease is considered rheumatic. 

Therefore, fibromyalgia is different from many other rheumatic conditions (such as rheumatoid arthritis, systemic lupus, and polymyositis).  Like arthritis,however, fibromyalgia can cause significant pain and fatigue,and it can interfere with a person’s ability to carry on daily activities.  Also like arthritis, fibromyalgia is considered a rheumatic condition.  People with certain rheumatic diseases, such as rheumatoid arthritis, systemic lupus erythematosus (commonly called lupus), or ankylosing spondylitis (spinal arthritis) may be more likely to have fibromyalgia, too.  One study supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is trying to identify if certain genes predispose some people to fibromyalgia.

Syndrome

Fibromyalgia is a syndrome rather than a disease.  Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.

Fibromyalgia syndrome is a common and chronic disorder characterized by widespread muscle pain, fatigue, and multiple tender points.  Fibromyalgia—A chronic syndrome that causes pain and stiffness throughout the connective tissues that support and move the bones and joints.

Psychological

There is common agreement that patients with fibromyalgia very often experience anxiety and depression.  They also have in common a muddled history full of claims that the patients’ psychological status is to be blamed. Psychological input is worth considering in cases of Fibromyalgia, since Fibromyalgia is biobehavioural in nature.  Psychological disregulation is discussed and hypothesised to cause but also later in the process parallel alterations in somatic homeostatic functions. 

Moreover, considerable debate continues about whether fibromyalgia is even a distinct syndrome or is instead a collection of painful conditions with overlapping features.  A core concept, "unprotected self," mirroring childhood conditions and adult psychological functioning, was identified.  Like other chronic painful conditions, fibromyalgia may be associated with a significant amount of psychological distress.  ** The Mind-Body Connection ** Health care professionals are learning that the physical aspects of chronic pain conditions such as FMS cannot be effectively understood without consideration of the associated emotional and environmental factors.

Conclusion

Summing it up, the history of FM has been colored by false accusations that this syndrome is none other than a problem of stress, anxiety or depression.  So often FM patients are labeled as having a stress-related sleep disorder — once again implying that stress is at the root of their problems.  Preliminary results showed that people with fibromyalgia had significantly more memory problems than adults their same age and similar to those 20 to 30 years older.  Regardless of these opinions, fibromyalgia can be considered a syndrome rather than a disease as its signs, symptoms, and medical problems are sporadic and not related to a single, identifiable cause.  

Article to follow soon

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