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Fibromyalgia Demystified

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By Iphigenia


Fibromyalgia ( "fibro" for the tendons, "myo" for muscle, "soreness" for the pain), is a syndrome characterized by muscle pain and chronic non-restorative sleep. The existence of this syndrome has been recognized since 1992 by the World Health Organization. Statistics show that in industrialized countries, fibromyalgia affects 2% to 6% of the population. Fibromyalgia often prevents the person who suffers from going about their daily business. A particular characteristic of fibromyalgia is that the various symptoms reinforce each other creating a vicious circle which it is difficult to break.

Still poorly understood, fibromyalgia has raised some controversy in the scientific community because its causes and symptoms are not always clearly determined. Doctors initially regarded it as a mental illness. Today, in addition to a particular psychological profile (depressed mood, pessimism) there are clear physiological factors (metabolic, hormonal, etc.) and sufferers have a lifestyle that predisposes to fibromyalgia (stress, diet, physical inactivity). Then again, such is the wide experience of FM sufferers that this general profile is not accurate. In my case I have not suffered from depression and I have always been an optimist. The physiological factors ring true but the lifestyle factors do not – I have not had undue excessive stress in my life, I have a good diet which I have always thought out carefully since I became vegetarian 30 years ago and I have always been physically active, not sporty, but I walk everyday 4 or 5 times a day, take much longer walks at weekends and snorkel and swim throughout the summer.

The Diagnosis of Fibromyalgia I have covered in greater detail elsewhere so here's just a brief outline of the diagnostic criteria :–

Many symptoms of fibromyalgia are the same as symptoms of other conditions, diseases or syndromes (chronic fatigue syndrome, irritable bowel syndrome, migraine, etc..) These similarities complicate the diagnosis of fibromyalgia.

The two principal criteria established by the American College of Rheumatology and approved by an international committee are:
1. The presence of diffuse pain for more than three months.
2. A sensation of pain on at least 11 points out of 18 defined points when a pressure of up to 4 kg per cm2 is exerted on those points.


Charles Darwin

When Darwin he returned to England after his travels to South America and to the Pacific Islands, he started suffering from what may well be fibromyalgia. Fatigue, pains, abdominal troubles, headaches, insomnia, anxiety, problems with dry skin, used to flare up when he was stressed. Notably when he attended meetings at which he was forced to defend his theory of evolution.

Attempts at diagnosis have suggested Chagas disease contracted in South America, psychosomatic disease and even intoxication. Even then, medical opinion seemed to ignore the fact males can suffer from fibromyalgia and that "unexplained" diseases are not all psychological!

Causes of Fibromyalgia

Although fibromyalgia causes chronic muscle pain, its origin is not in the muscles. The exact cause of the syndrome is not yet known. According to current knowledge, the problem is in the limbic system, a brain region that plays a role in emotions, memory and learning.

Trauma

Physical trauma is a probable cause. In my case it has been traced back to an accident in the spring of 2004 when my shoulder muscles were badly damaged. For two years I had a very painful shoulder which was slowly getting better with physiotherapy and lots of gentle swimming. As my shoulder got better other symptoms that I had blamed on the pain in my shoulder did not get better – notable broken nights, numbness and tingling in various and different parts of my body, headaches (which I had rarely experienced before,) heartburn (which I had only ever experienced during the last couple of weeks of pregnancy in 1984), dry eyes, dry mouth, maxilla-facial pain and inexplicable sore throats with hoarseness. I as diagnosed by one doctor as being ‘riddled’ with arthritis. I doubted this because I do have arthritis in 3 vertebrae and the pain is totally different. Eventually, fibromyalgia was diagnosed and linked back to that trauma.


Other possible causes :
A metabolic disorder of "substance P", which increase sensitivity to pain and whose association with stress, anxiety and depression is also known. “Substance P is a neurotransmitter which sends signals from the brain to various parts of the body in the form of pain. This neurotransmitter – which is to be found as a protein in both the brain and spinal cord – is often affiliated with the feeling of pain in such inflammatory conditions as Fibromyalgia and M.E (Myalgic Encephalomyelitis).

It is often this protein – in the form of a neurotransmitter – that allows the brain to register pain in areas of the body known as ‘trigger points’ which are synonymous with pain in Fibromyalgia and M.E (Myalgic Encephalomyelitis) sufferers.” from Fibromyalgia Syndrome

A chronic lack of sleep - it may be that the poor sleep is not only a symptom but a cause of fibromyalgia.

Cartoon by Yaakov Kirschen on his "DryBones" Blog
Cartoon by Yaakov Kirschen on his "DryBones" Blog

Florence Nightingale

Born on 12 May 1820 in Great Britain, Florence Nightingale was a practicing nurse when she contracted a severe form of Chronic Fatigue Syndrome and Fibromyalgia at the age of 35 years after a severe, unknown infection. By 1896 she was completely bedridden. Despite her illness, Florence Nightingale was instrumental in the founding of the International Red Cross and also established the first school for nurses in Britain.

As usual with fibromyalgia the probability of other diseases confusing the diagnosis is high. A recent biography says that she suffered from brucellosis and the associated spondylitis. Nevertheless, she represents a powerful symbol of resistance and struggle against all the diseases with which she has been associated and her birthday, 12th May, is both International Chronic Fatigue Syndrome Awareness Day and Fibromyalgia Awareness Day.

Symptoms, Risk Groups, Risk Factors

The primary symptoms of FM are discussed fully in my first fibromyalgia hub of this series. Briefly, symptoms vary from person to person. Also climate, time of day, stress levels and physical activity are factors that influence the severity of the following symptoms and their variability over time :
• diffuse muscle pain that persists for months and often accompanied by stiffness, and some locations of the body painful to the touch.
• non-restorative sleep and stiffness upon waking.
• persistent fatigue (all day).
• headaches and severe migraines, possibly caused by muscle tension in neck and shoulders, and a disruption of natural pathways of pain control.
• irritable bowel syndrome: diarrhea, constipation and abdominal pain.
• depressed mood or anxiety (in approximately one third of people with fibromyalgia).
• difficulty concentrating.
• increase in the acuity of the senses, a heightened sensitivity to odors, light, noise and temperature changes (in addition to sensitivity to touch).
• numbness and tingling hands and feet.
• painful menstruation.
• irritable bladder syndrome.

At Risk Groups

• Women. Fibromyalgia affects about four times more women than men. Researchers believe that sex hormones influence the emergence of this disease, but they still do not know how exactly. It appears that testosterone makes men more resistant to pain.
• People aged over 50 years. Paradoxically, among women, the disease is mainly present between 40 and 60, and generally around the menopause. After the menopause the rate of sex hormones decreases and logically women would be more protected against pain. However, with fibromyalgia the reverse occurs.
• People with a family member who has suffered from fibromyalgia or depression.
• People who have sleep disorders due to muscle spasms or nocturnal restless legs syndrome.
• People who have experienced traumatic experiences (real physical or emotional), as an accident, a fall, sexual abuse, surgery or childbirth difficult.
• People who have been suffering from a major viral infection such as Lyme disease or human immunodeficiency virus (HIV).


"Why Me" The Book of Job by Einar Harkonarson
"Why Me" The Book of Job by Einar Harkonarson

Job

In the Book of Job God caused Job to experience a lot of suffering. In many parts of the book he may be describing pains that could relate to fibromyalgia.

In Chapter VII, Verses 3 and 4: " ..months of suffering and nights of pains...when I lie in bed at night I say when will I rise and during the day I hope for the night.."

In Chapter XXX, verses 16 and 17: "...days of pains are my life and at night my bones are pierced and the pains that make me suffer do not let me any rest…."

The descriptions of his sufferings in many other verses have given rise to the idea that Job had fibromyalgia !

Medical Treatment for Fibromyalgia

Because we know little of the origins of fibromyalgia, the medical treatment offered to patients is based more on clinical experience and knowledge than on the neurophysiology of pain. A multidisciplinary medical input is required, and treatments designed to treat other diseases such as depression and insomnia are increasingly used.

Drugs
Anti-inflammatory drugs (NSAIDs) such as ibuprofen (eg Advil ® or Motrin ®), naproxen and acetaminophen (Tylenol ®) can sometimes alleviate the pain and muscle stiffness. Their effectiveness varies from person to person. They are especially useful when fibromyalgia appears in a person suffering from an inflammatory disease such as rheumatoid arthritis. Aspirin (another NSAID) would rarely be useful.

Attention. In the long term, the use of medications like NSAIDs can cause serious side effects: pain and bleeding in the stomach, stomach ulcers, kidney damage and hypertension

Antidepressants such as tricyclic inhibitors or serotonin reuptake prescribed in low doses can increase the amount of serotonin in the brain. Low levels of serotonin are linked not only to depression but also to migraines, digestive problems and to anxiety, all of which are among the symptoms of fibromyalgia. In addition, some antidepressants have a specific effect on pain. Therefore, they are often used even in the absence of depression. Examples include amitryptiline (Elavil ®), used as a painkiller and to deepen sleep. It seems that antidepressants are the best long-term treatment against muscle pain of fibromyalgia. However, they do not help everyone.

Anticonvulsants - initially designed to treat epilepsy - can stabilize nerve messages in the spinal cord, for example gabapentin (Neurontin ®), pregabalin (Lyrica ®) and topiramate (Topamax ®). Some of these anticonvulsants improve sleep quality (especially gabapentin and pregabalin at all).

Sedatives are sometimes prescribed to facilitate sleep, but their long-term use is generally not recommended by doctors (eg, Imavone ®).

Muscle relaxants may also help relieve pain. The only effective muscle relaxant for fibromyalgia is the Flexeril ®. Its effectiveness is due to a specific action which is not related to its usual usage.

Note :
- Corticosteroids (like prednisone) have no useful effect in treating fibromyalgia.
- Narcotics, or opioids, should be used only as a last resort when other treatments have proved ineffective. Their job must be done under close supervision of the physician because of the risk of dependency.

In my case I tried an NSAID for 1 year and suffered a chronic unacceptable side effect (nausea) but experienced no positive effects. I take no medicines at the moment except a herbal sleep aid which contains valerian and hops. That and podcasts from the BBC World Service and BBC Radio 4 get me though many a night. Often I just get up and work – then sleep during the following day.


Exercise Helps Fibromyalgia

Exercise stimulates the body to produce endorphins which are hormones that provide a sense of well-being and so can ease pain. A summary of studies published in 2002 concluded that the practice of supervised aerobic exercise reduces symptoms of fibromyalgia and improves physical abilities. Stretching exercises and exercises designed to improve flexibility also improve some symptoms, but evidence for this is less well documented.

Sufferers must not be afraid to aggravate their FM through exercise, since fibromyalgia is problem that originates in the muscles. Moreover, it is known that poor physical condition helps generate fatigue and anxiety. As with any exercise it is important to begin gradually, with a program tailored to each individual’s physical condition.

Aerobic exercises performed in a pool, preferably in hot water, can be a good starting point to get back into action. According to two clinical trials published in 2006, aqua fitness exercises (walking or running in water, for example) are effective in relieving pain caused by fibromyalgia and to improve feelings of well-being.

Warm compresses and gentle massage can also help. Personally, if I have a bad flare-up, I like to get myself propped up with cushions and have a hot water bottle or two which I move around the worse pain points. It is rarely that bad for me – and is more so in the winter.

Yoga and T'ai Chi are also excellent activities.

What My Doctor Told Me

"Fibromyalgia is a complex disease which is not very well understood. In my practice, I see non-restorative sleep as an integral part of the problem, and a lot of medical research has come to this same conclusion. In fact, poor sleep is known to aggravate the pain, naturally the fatigue is worse and cognition is adversely affected – your levels of concentration and memory, for example. Indeed, the only drugs that have some effectiveness against fibromyalgia affect the brain by promoting deep sleep. Achieving good sleep is an important goal and moderate exercise, a good diet and stress management can contribute significantly. Few people recover from fibromyalgia, but it is possible."

Comments

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BristolBoy profile image

BristolBoy  says:
8 months ago

Interesting to know! I had never even heard of it before reading you hubs.

Teresa McGurk profile image

Teresa McGurk  says:
8 months ago

Great hub. It's interesting to me that I take some of the medications you list for depression, too (Lyrica). For some reason it's the "magic ingredient" that makes the other two work. It certainly looks as if the intertwining of symptoms is relevant. Thanks for this great information.

Amanda Severn profile image

Amanda Severn  says:
8 months ago

My first thought when reading the symptoms, was, wow that sounds like an extreme form of the menopause! At 49 I get vaguer everyday, I don't always sleep as well as I would like, and I'm often so stiff in the morning that I wonder whether I need oiling! Obviously FM is more involved and more distressing than that, but of course there will always be overlap with any list of symptoms, which is partly why some things are so hard to diagnose. It sounds as though you already do everything you can to mitigate the effects, but have you also looked into Hypnotherapy? Hypnosis can be great for deep relaxation, and you can also learn pain management techniques.

Silver Freak profile image

Silver Freak  says:
8 months ago

I was diagnosed with FMS/CMP Complex 11 years ago. My Dr. told me, " Go home and learn to live with it, there's nothing we can do for you. This is a lifetime sentence to pain, and I'm so very sorry."

I've tried everything there was, including being dosed with an almost toxic dose of Neurontin and about 17 other drugs, all with worsening side effects. Finally got tired of being a zombie guinea pig so I titrated off all the drugs. Took 6 months, but at least I could think, sometimes. The only thing that helps somewhat is alternating hot and cold, and Aleve. Sometimes even that doesn;t work and I do have to just learn to live with it.

I've gotten to the point where I know what the weather will be about 24 hours in advance, and I can tell by what part of me hurts just how bad it will be. Hubby says I'm better than the weather channel ;-)

Somedays, just knowing someone else knows exactly how you feel is as much comfort as we get. So, Iphegenia, please consider yourself gently hugged and tenderly patted on a part of your body that doesn't hurt by a fellow fibromite.

Hope we both feel much better soon.

goldentoad profile image

goldentoad  says:
8 months ago

I may sound ignorant when I ask this, but how's marijuana been used to help relieve some of the symptoms? I have actual conditions, bad back, insomnia, not to mention a ton of stress, as to why I really smoke but a few tokes helps and definitely put me to sleep without all the chemicals from the doctor. In either case, I hope you feel better.

Iphigenia profile image

Iphigenia  says:
8 months ago

Hi everybody and thanks for all your supportive comments.

Bristol Boy - I hadn't heard about it until I got it ! That's one of the problems with this condition. there used to be a lot if stigma attached apparently, but it has opened up a lot.

Teresa - the range of drugs used is a bit frightening - I've only mentioned a few here. I don't take anything at the moment but one day I may have to - i just hope I am informed enough at the time.  GT may have the answer ....

Amanda - we are close in age and therefore other 'life' factors. The symptoms are confusingly similar to passing hormonal upheavals - in fact, i did have some unsupportive medical comments about 'being a lady of a certain age'. The chances are that your symptoms are natural - check out my hub on diagnosing FM for further details. Hypnotherapy - I'd love to try that - forhealth and just to see what comes out. I've got a very imaginative inner world (actually, worlds) in my head. I might freak the therapist out !

Silver Freak - glad to meet you - I'll hop over to your fan club after I've finished here. My symptoms sound pretty mild compared to yours, but I am good at preducting the weather !

GT - hmmmmm, thinking about it. I don't actually smoke anything, however I do bake great happy cakes but have not done so for a while - I'm not taking anything at the moment apart from natural valerian and hops when I'm overtired. Yes, maybe those happy cakes should have an outing. Great idea.

BTW GT re: your new picture - are you Jesus or the Great Lebowski now ?

Sorrel profile image

Sorrel  says:
8 months ago

A good articlt for helping understand fibro.

Living with someone that has it (you) i know just how much it affects even the little things in everyday life.

goldentoad profile image

goldentoad  says:
8 months ago

The Dude.

Iphigenia profile image

Iphigenia  says:
8 months ago

Sorrel - love you xx

GT - Dude ! Gotta love you too !

Hawkesdream profile image

Hawkesdream  says:
8 months ago

http://emofree.com/dw.aspx?i=E&c=623936 Hi Iphigenia and all your fellow sufferers, don't know if this could help but it's worth a try.Found the above pdf file on web ,it's a free download and seems to help a lot of people with various problems.

AshleyVictoria profile image

AshleyVictoria  says:
8 months ago

I never knew much about this disease, thanks for such an informative hub. It sounds painful. My aunt has something that sounds much like this disease...I wonder if this is what she has. She is in CONSTANT pain...

Iphigenia profile image

Iphigenia  says:
8 months ago

Good morning campers!

Hawksdream - thanks for you comment and thoughts, I've downloaded that manual and will read it over the next few days. Thankyou.

AshleyVictoria - the great thing about hub pages is that as well as being fun, a place to write etc it is an education - I learned abut Webisodes from you and now you know more about fibromyalgia. Perhaps show your aunt some of my FM hubs - there is one about diagnosing FM which is worth reading because some of the symptoms are very similar to other conditions.

Jewels profile image

Jewels  says:
8 months ago

Great hub. I know a few people who have this. Two cases have lives where stress has been a factor, taking on more than the average person and forsaking a good relaxation regime. Are you aware of any case studies where Restless Leg Syndrome is included in the mix?

Iphigenia profile image

Iphigenia  says:
8 months ago

hi Jewels - thanks for popping by - I don't know of any case studies re: FM and RLS - my legs twitch badly occasionally (not too often) and I wake up with a start ! Once I knocked my little old westie right off the bed ;..

k@ri profile image

k@ri  says:
8 months ago

Thanks for spreading the word and educating us on fibromyalgia. One of my sisters and my cousin (who is male) have this disease. It is very difficult at times because many people, physicians included, do not believe in the disease.

JamaGenee profile image

JamaGenee  says:
8 months ago

I once worked with a woman (in her mid-30s) who swore she had a *severe* case of fibro.  Trouble being her job was labor intesive and physically active, she was always on time, never missed a day, never called in sick, said she slept well at night, and *never* appeared to be in any kind of pain.  She was also a pill junkie - had some old doctor who'd write prescriptions for anything she wanted.  Once she bragged she was taking 67 pills a day!  I always thought she heard about fibro somewhere and adopted it as the excuse to pop all those pills.  Definitely didn't help the case for fibro as a real disease! 

To those of you who truly do suffer from fibro, you have my utmost sympathy and many *gentle* hugs!

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