12 October, 2007

Magic pills

Don't know what I'd do without them. I finally got an half way decent night of sleep! Still v. achy today but at least the sun is coming out and (touch wood) it's not meant to rain till next week!

I will post a four week update on Monday, happy weekend!

Article on Fibromyalgia that is very informative and thorough

Learning To Manage Fibromyalgia Syndrome

Darlene A. Clarke, R.N., M.S.N.President & Founder of the Northeast Ohio Branch of the EDNF. Darlene has Hypermobility Type EDS and Fibromyalgia Syndrome.

Individuals with EDS are often also diagnosed with Fibromyalgia syndrome. Fibromyalgia is a common and often disabling disorder whose cause remains obscure. Fibromyalgia frequently resembles other disorders such as rheumatoid arthritis and lupus. Individuals commonly complain of widespread muscle pain and tenderness, as well as fatigue and exhaustion after minimal exertion. A characteristically high “tender point” is evident. For individuals diagnosed with Fibromyalgia, learning to effectively cope with this disorder is essential to one’s emotional and physical health.

It's morning and as you awake you realize you are exhausted and you haven't even left the bed yet. The thought crosses your mind that for as tired as you are, you may as well have never gone to bed. You barely have enough energy to get out of bed and care for yourself, let alone being able to care for the children, or go to work or school. As you struggle to get out of bed, you realize that your body aches all over and you feel as if you are a 100 years old. You are stiff and can hardly move. What is wrong with you? After seeking one or more medical evaluations, you finally get the answer. Your physician informs you that you have Fibromyalgia syndrome. Such a big word that sounds ominous and must mean you have some dreaded problem. You have never even heard the term before.

So, what is Fibromyalgia syndrome?

Fibromyalgia syndrome is a common form of chronic, generalized muscular pain and fatigue. In some cases, the pain is so intense that it can be incapacitating.

1 Despite that Fibromyalgia does not result in serious, long–term target organ damage; it does have a negative impact on the quality of life similar to that of rheumatoid arthritis.

2 To effectively manage and cope with Fibromyalgia syndrome, it is imperative that one has a clear understanding of Fibromyalgia, its signs and symptoms, triggering factors and how it is treated and managed.

The term “Fibromyalgia” can be broken down into fibro (fibrous tissue), my (muscles), and algia (pain and tenderness). In Fibromyalgia there is pain in the muscles and fibrous connective tissues which comprise ligaments and tendons. Therefore, while Fibromyalgia feels like a joint disease, it affects muscles and their attachments to bone and joint deformity does not ensue.

3 Fibromyalgia can run in families, possibly suggesting an inherited predisposition. To date, the cause of Fibromyalgia is not known. It may lie dormant until it is triggered by an injury/trauma, stress, or a sleep disturbance. There are other theories as to what triggers Fibromyalgia. One theory is that the syndrome is caused by an infectious agent such as the influenza virus. Other suspected causes include extreme physical deconditioning of the nervous system brought on by a lack of exercise, and changes in muscle metabolism that can result in decreased blood flow to the muscles with fatigue and decreased strength the end results.

4 More recent research points to two key chemicals of the Central Nervous System that facilitate the regulation of pain messages transmitted to our brain. These two chemicals are substance P and serotonin. Substance P begins the pain–signal process following tissue injury. Serotonin reduces the intensity of pain signals in the transmission of pain and is very important in sleep regulation. Low levels of serotonin and elevated levels of substance P have been found in individuals with Fibromyalgia. These findings support the theories that individuals with Fibromyalgia have unusually high pain intensity messages transmitted to their brain as well as deficiencies in the inhibition of pain.

5 One clear fact remains: more research is needed on Fibromyalgia. Despite not being able to identify the exact cause of Fibromyalgia, individuals present with similar signs and symptoms.

Signs and Symptoms

Probably the most frustrating aspect of having Fibromyalgia syndrome, as in EDS, is that you “look healthy.” Compounded by the fact that test results are “normal,” it is difficult to convince others that something is wrong with you. Every X–ray and blood test your physician ordered has come back within normal limits. You embark down the path of self–doubt and frustration – is this pain real, or is it all in my head? Why is it so difficult to put a label to the signs and symptoms of Fibromyalgia?

Fibromyalgia is frequently misunderstood and confusing because the symptoms seen in this syndrome are also found in other conditions such as rheumatoid arthritis and lupus. Women are affected more than men and the symptoms usually occur first when an individual is between 20 and 40 years old.1 However, it must be noted that Fibromyalgia can sometimes affect children and the elderly.4 Recent research studies have established guidelines for diagnosing Fibromyalgia based on the presence of certain signs and symptoms.

Pain

The most common complaint from patients with Fibromyalgia is that they have diffuse “pain all over” – almost like the flu. Although in rarer cases, the pain is quite severe and disabling. More often, the symptoms often begin insidiously and may wax and wane in severity. In almost all cases, individuals complain of some degree of pain continuously. The pain is most often worse at “tender points” specifically located on the body. Fibromyalgia type pain generally is worse in the morning and late evening and often is associated with stiffness. Muscle groups that are used repetitively result in an increase in the level of pain you experience.

Fatigue and Sleep Disturbances

Have you ever awaked after sleeping and felt refreshed and rejuvenated? Most likely your answer would be “no.” Immense fatigue is frequently the debilitating aspect of Fibromyalgia. The fatigue may be exhibited as an overall tiredness and lack of energy, or as muscular fatigue and a lack of endurance. In either case, it can be difficult to perform activities of daily living such as caring for self or others, performing household chores, going shopping, or to function effectively at work. Keep in mind that it takes a tremendous amount of energy to deal with having chronic pain and this too can contribute to an individual’s fatigue.

Approximately 90% of individuals with Fibromyalgia complain of moderate to severe fatigue coupled with a lack of energy or the type of exhaustion that is found with a lack of sleep. In most cases, individuals wake up feeling tired even after sleeping all night. While their minds may be rested, their bodies feel as if they never went to sleep. Many are aware that their sleep has become lighter with frequent awakenings throughout the night. Scientific studies reveal that individuals with Fibromyalgia have abnormal sleep patterns and are deficient in Stage 4 sleep – the deepest stage.1,3,5 It is important to note that a secondary Fibromyalgia syndrome can occur with any connective tissue disease (EDS included) and may not necessarily be related to sleep disturbances.6

Central Nervous System Symptoms

As in other chronic illnesses, mood and mental changes can occur in individuals with Fibromyalgia. Many individuals feel “blue” or “down,” although only about 25% are clinically depressed. In most cases, depression and/or anxiety tends to follow the onset of Fibromyalgia symptoms and may be the result of Fibromyalgia and not the cause of it.3

People with Fibromyalgia may also experience numbness and tingling in their hands, arms, face, feet and legs. These symptoms can also be found in other disorders and usually require numerous tests before the diagnosis of Fibromyalgia is reached by a physician.

Other Problems

Muscular as well as migraine headaches are common in Fibromyalgia. Abdominal bloating, pain, alternating diarrhea and constipation are also commonly seen. They resemble irritable bowel syndrome or “spastic colon” in nature. Similar bladder spasms and irritability results in urinary urgency and frequency. The skin and circulatory system are sensitive to moisture and temperature changes resulting in temporary changes in skin color.2,3

Clinical Diagnosis

Currently, no definitive laboratory tests exist to make the diagnosis of Fibromyalgia. Rather, the diagnosis is made by a physician after obtaining the individual’s medical history and performing a complete physical examination.

A hallmark of Fibromyalgia syndrome is reduced pain thresholds at designated tender points, demonstrated upon palpation.2 According to the American College of Rheumatology, the diagnostic criteria for Fibromyalgia includes: a). widespread diffuse pain that has been present for at least three months and b). pain that is present in 11 of the 18 bilateral tender point sites (see figure 1) when 4 kg of force is applied by digital palpation.1,2,7 Recall your response the first time your physician palpated these 18 “tender points.” Did you say “ouch,” flinch, make a facial grimace, and attempt to withdraw away from your doctor or even jump? These are the usual responses elicited by an individual with Fibromyalgia. Frequently, patients are shocked by the level of pain they experience when these areas are palpated. Now that you know how Fibromyalgia is diagnosed, let’s look at the common triggering factors of Fibromyalgia.

Common Triggers of Fibromyalgia

Three common factors seem to trigger a flare in Fibromyalgia symptoms, physical factors, emotional factors and environmental factors. Keep in mind that your Fibromyalgia can become aggravated by these factors alone or any combination of these factors.

Physical Factors

Several physical factors can aggravate your Fibromyalgia. Infections are one type of physical factor that can produce the most profound exacerbation of Fibromyalgia symptoms. The second type of physical factors deal with ergonomics. The positions we maintain our bodies in has a direct correlation to the pain associated in Fibromyalgia. For instance, do you have a job that requires you use repetitive movements all day? Are you required to work in one spot with your arms elevated above your work surface? Do you need to remain in one position (i.e., standing, sitting or driving) for prolonged amounts time? If you answered “yes” to any of the above questions, you will be able to relate to the pain that results from maintaining your muscles in a sustained isometric position for any length of time. Ergonomics also plays an important role at home. It’s often difficult for someone with Fibromyalgia to push a vacuum cleaner, wash walls, paint or prepare meals. These tasks require the use of shoulder muscles to maintain arms in extension at some level in front of our body. What generally happens is that an ache begins in the neck, shoulders and upper back. The ache rapidly turns into pain that elevates in intensity as it slowly radiates up and down the back. You feel as if you can’t maintain your arms in this position any longer, and you quickly return your arms to your sides as you wait for the pain to slowly ebb away. Most, if not all of you, can relate to this all too familiar type of pain.

Emotional Factors

Stress is something that each of us has to deal with on a daily basis. Unfortunately, emotional stress is a prominent factor aggravating Fibromyalgia. We are faced with stressful situations at home, work, school, driving your car on the highway etc. It isn’t difficult to identify situations that aggravate your Fibromyalgia symptoms – that’s the easy part of the equation. The trick is to avoid or attempt to modify any stressful situation.

It is extremely difficult to deal with those situations in which any stressor is unrelenting. These types of situations can present themselves in the home with family members or in the workplace with coworkers or supervisors. In these situations, one must look at not only the circumstance, but how you react to the stressor. Ultimately, it comes down to dividing these stressful situations into two categories: those that you have control over and those you have absolutely no control over. In circumstances that you have no control over, it is imperative that you learn to alter your response to those particular situations. Save your energy for those battles that you can emerge victorious.

Environmental Factors

How many times have you been able to predict the approaching weather without having looked at a weather map? Probably too numerous to count. You feel like you are a human barometer with the ability to predict weather changes before they occur. Most likely you have found that when the barometric pressure drops, it is followed by rain, cold, snow, and fog – all of which aggravate your symptoms.

Many individuals with Fibromyalgia report that certain types of artificial lighting, cold drafts or irritating noises often result in a flare of their muscle pain. When was the last time that you were able to enter a pool that wasn’t heated? Just a guess, but it was probably many years ago. Most individuals with Fibromyalgia do not tolerate swimming in cold or cool water. We are usually found in the heated pools that others say are “too hot to swim in” or in hot tubs. The goal is to determine what factors aggravate your Fibromyalgia and either eliminate them if possible or at least modify them. Now that you know what factors can trigger your Fibromyalgia, let’s look at how it is treated and managed.

Treatment and Management

Since Fibromyalgia’s definitive cause is not known, current treatments are focused on relieving painful symptoms, not necessarily curing them. Additionally, the treatment program prescribed by your physician will be individualized to address your specific needs.

Numerous treatments have been employed over the years for Fibromyalgia. No one method has been entirely successful, but several methods will be prescribed by your physician in an attempt to control your symptoms. A sense of overwhelming relief comes with the validation of your symptoms and a diagnosis. Just knowing the name of your condition will not be enough though. Your physician and healthcare team will educate you and your family about Fibromyalgia. Specifically, you’ll be informed about your prognosis, possible causative factors, the aspects of treatment and specific body mechanics techniques. This education will prove invaluable to you. If you are taught about what to expect and how to deal with flare–ups, you will be able to control your Fibromyalgia. The goal of education is to moderate the effects of Fibromyalgia on your life. Only then will Fibromyalgia not become your entire life.

Medications may be prescribed by your physician to control pain and improve deep Stage 4 sleep. If pain is prominent, your doctor may prescribe a low dose of an analgesic or nonsteroidal anti–inflammatory drug, although most nonsteroidal anti–inflammatory drugs are marginally beneficial and carry the risk of side–effects that outweigh their benefits. Therefore, you will be most likely instructed to use over the counter medications such as acetaminophen, aspirin or ibuprofen to relieve pain and reduce stiffness. If you are currently on a nonsteroidal anti–inflammatory drug to help manage your EDS, your physician will likely instruct you to take acetaminophen, not ibuprofen or aspirin, to control your pain.

To improve Stage 4 sleep, your physician may prescribe low doses of tricyclic antidepressants (Elavil, Sinequan) or the muscle relaxant cyclobenzaprine (Flexeril). These drugs are structurally similar and they block the re–uptake of the neurotransmitters that regulate deep Stage 4 sleep.3,8. These medications carry the risk of potential side–effects which include: drowsiness, weight gain, dry mouth and constipation to name a few. Do not be discouraged if you do not respond to the first medication(s) prescribed. Your doctor may need to adjust dosages or change drugs to achieve an improvement.

Individuals with Fibromyalgia should practice good sleep hygiene to promote sleep. Bedtime rituals can relax you in preparation of sleep. These bedtime rituals can include: taking a warm bath or shower, reading a novel, watching a relaxing television program or listening to soothing music which can promote sleep. Attempt to follow a regular sleep schedule and go to bed at the same time each day. Sleep eight hours nightly if possible. Avoid alcohol, caffeine and tobacco before retiring – they will disturb your sleep. Also abstain from taking midday naps.

Exercise is a key element in Fibromyalgia management. Your physician will recommend that you slowly increase your aerobic fitness with structured, low impact activities such as swimming, water aerobics, walking, or riding a stationary bicycle.2,3,7,8 Research has indicated that aerobic exercise improves sleep, enhances endorphin release and has antidepressant effects.2 It is important to check with your physician to ensure that the exercise program you have chosen is not contraindicated in your specific type of EDS. Remember to always stretch your muscles before engaging in any aerobic activity. Increase your exercise program gradually to reduce the chance of injury. As you continue to exercise, you’ll notice that you feel better, have more endurance and experience a reduction in Fibromyalgia symptoms. It’s worth the possible pain and fatigue felt initially to achieve these end–results.

Always practice proper body mechanics and apply ergonomic principles at home, work and at rest. These techniques will prevent injury and reduce flare–ups of Fibromyalgia symptoms.

Your doctor may prescribe various physical therapy treatments. Possible treatments include: massage, heat or ice applications, ultrasound or whirlpool therapy and microvoltage electrical stimulation. These are all passive physical therapy techniques with varying results from individual to individual. These treatments are usually prescribed for flare–ups and are employed for short periods of time.3,8

Taking Control of Fibromyalgia

You can engage in several actions that will help you gain control of your Fibromyalgia. First and foremost, listen to your body. Identify those triggers that aggravate your symptoms and then avoid or at least minimize them. Get your stress level under control by practicing relaxation techniques. Relaxation techniques are primarily effective for chronic pain and have many benefits. Relaxation techniques enable you to reduce anxiety, pain and stress, reduce muscle tension pain and relieve the helplessness and depression associated with chronic pain. Despite having chronic pain and fatigue, learn to develop a positive attitude. Remember that if you have a constant negative attitude, your Fibromyalgia symptoms will exacerbate. Look for the good in every situation – it’s there, but you may need to look closely.

Eat healthy and avoid fat in your diet. Excess weight is detrimental to your body and can aggravate your symptoms. Eating properly also maintains your health and avoids illness. Keep in mind that an illness (i.e., cold, flu, bacterial infection etc.) can be a triggering factor for your symptoms.

Educate yourself, family and healthcare providers about Fibromyalgia syndrome. Remember that knowledge is a powerful weapon in coping with any chronic illness. Knowledge also helps you to take control of your Fibromyalgia and reduce the exacerbation of its symptoms.

Lastly, seek support from others with Fibromyalgia. Check with your physician, healthcare institution, and within your local community for a Fibromyalgia support group. It is extremely beneficial to receive support and understanding from others who have the same type of problems from Fibromyalgia as you do. Connecting with a support group also helps you and your family to cope with having a chronic illness. And who knows, maybe someday you will have the opportunity to offer support to someone else just diagnosed with Fibromyalgia. I guarantee it will be one of the most gratifying and fulfilling experiences of your life.

Conclusion

Receiving a diagnosis of Fibromyalgia syndrome is an important first step in managing this condition. It is not the last step though! It is imperative that you have a clear understanding of Fibromyalgia, its signs and symptoms, triggering factors and treatments. Learning to effectively cope with this disorder is essential to one’s emotional and physical health. It is only then that you will be able to manage your Fibromyalgia and prevent it from becoming your whole life. While there isn’t a cure for Fibromyalgia, there are treatments that are effective in managing its symptoms. There is life after finding out you have Fibromyalgia. Tomorrow will be better and holds the possibility of a cure!

References
1 Fan, P.T., & Blanton, M.E. (1992). Clinical features and diagnosis of Fibromyalgia. Journal of Musculoskeletal Medicine, 9(4), 24–42.

2 Wilke, W.S. (1996). Fibromyalgia: Recognizing and addressing the multiple interrelated factors. Postgraduate Medicine, 100(1), 153–170.

3 Arthritis Foundation, Inc. (1995) Fibromyalgia Syndromes, 1–12.

4 Dunkin, M.A. (1993, September–October). Fibromyalgia: Out of the Closet. Arthritis Today, pp. 24–28.

5 Dunkin, M.A. (1997, September–October). Fibromyalgia: Syndrome of the ’90s. Arthritis Today, pp. 41–47.

6 Ignatavicius, D.D., Workman, M.L., & Mishler, M.A. (1995). Medical–Surgical Nursing (2nd ed.). Philadelphia: W.B. Saunders Company.

7 Goldberg, D.L. (1990) Fibromyalgia and chronic fatigue syndrome: Are they the same? Journal of Musculoskeletal Medicine, 7(5), 19–28.

8 Sherman, C. (1992) Managing fibromyalgia with exercise. The Physician and Sports Medicine, 20(10), 166–172.

Just finished reading this interesting article

Pain & the Hypermobility Syndrome by Prof R Grahame CBE, MD, FRCP, FACP University College Hospital, LONDON.

When the Hypermobility Syndrome was first put on the medical map in 1967, it was defined as the presence of musculoskeletal symptoms (predominantly pain) occurring in otherwise healthy individuals. Thirty years down the line we now think that there are probably two types of hypermobility.

The first is a milder type occurring in people whose joints are just like everyone else's but which have the capacity to move more than most people's joints. The other, a more marked form, has features that suggest that it may be part of an inherited connective tissue disorder similar to the hypermobile form of the Ehlers-Danlos Syndrome, formerly called EDS III. It probably is EDS. At the present time we simply do not know for certain whether or not HMS is merely a less severe type of EDS III. Pain can occur in other forms. For the rest of this article, in order to avoid confusion, I will refer to it as one condition, the HMS/EDS. There are many people with joint hypermobility in the community who experience no (or very little) pain. Most of them probably do not even know that they are hypermobile at all. Then something happens, and they start getting pains for the first time in their lives. Usually unexpected exercise or a change of job or lifestyle provokes the onset of pain. When ever symptoms commence, and irrespective of the cause of the hypermobility, the term 'Hypermobility Syndrome' is used to describe the condition. Hypermobile people without pain are just called hypermobile people.

A little known fact is that hypermobility occurs in many individuals in a few joints only. It does not necessarily have to affect all one's joints. Even hypermobility in a single joint can cause pain and/or instability in that joint; the diagnosis is still Hypermobility Syndrome (HMS/EDS).

People are born hypermobile. It is in their genes. It is the way they are made. So how is it that people with hypermobility can be literally fine for decades, only to be laid low from widespread pain, often out of the blue, which may make its unwelcome appearance during childhood, adolescence, or adult life? To explain these curious and seemingly inexplicable happenings, we postulate that the affected person, in this case the hypermobile person, had an inbuilt weakness of her (it is usually a 'her' but not always) strength-providing collagen or similar protein. This weakness renders body tissues less robust and hence less able to stand up to the physical strains of everyday life. We can explain a lot of the pain that arises on the basis of a series of (often quite minor) injuries that occur whenever there is a mismatch between the physical demands on one hand, and the strength of the parts being asked to perform them on the other. There is a whole host of painful injuries that can result, ranging from dislocations to fractures, disc prolapse, ligament sprains, muscle strains, pulled tendons (like tennis elbow or plantar fasciitis), etc.- conditions that can happen to anyone, but which occur more easily in those with the HMS/EDS. If one only knew one's strength (or lack of it), one should be able, in theory at least, to stay within the safety margin and thereby protect oneself from injury. Up to a point this is so. Many people with the HMS/EDS are able to modify their lifestyle and do just that. Others find it more difficult.

A joint that is beginning to wear starts to lose its cartilage or gristle, which is essential for the smooth movement between the adjoining bones. This wear heralds the onset of osteoarthritis, a condition painful in its own right. It is a very common form of arthritis in middle and old age, and one to which hypermobile people seem to be prone, in many cases at an early age. It is important to establish as far as possible to what extent the pain is due to trauma/overuse or to early onset osteoarthritis, as the treatment is very different. The emphasis with the former is on prevention, while with the latter it is on treatment by one form or another.

However, neither susceptibility to injury or overuse (repetitive injury), nor osteoarthritis, explains all the pain that is felt in the HMS/EDS. There is more to it than that. And here we get into a rather grey area, where there is more speculation than fact.

Let us try to piece the jigsaw together. Pain is something we feel. Even if it has a physical cause, as it undoubtedly has in the HMS/EDS, it is still a subjective experience. It is often accompanied by an intense sense of exhaustion. the severity of the pain we feel is greatly influenced by our state of mind. If we are upset or agitated it tends to increase. If we are content, relaxed or just happy it tends to diminish. The HMS/EDS people are often in the former category, and for good reason! Lack of understanding of the condition is widespread, and this, coupled with failure to receive adequate treatment for relief of symptoms, leads to frustration, resentment, anger (and lots more emotions which I could list but readers know them all only too well!) and, ultimately depression. These emotional influences can amplify pain, but they do not cause it.

Another piece of the jigsaw is a mysterious condition called fibromyalgia. This condition causes widespread chronic pain in muscles and is identified by the finding of multiple 'tender points' at specific sites in the body. For years the debate has raged as to whether it is a physical disease affecting the muscles, or whether it is an emotional disorder. The prevailing view is that it is probably some form of distress signal that can arise in people with a number of different and unrelated conditions. How this relates to hypermobility is that it has been shown that hypermobility and fibromyalgia occur together in the same person more often than one would expect on the basis of a chance happening. It does not mean that they are part of the same condition. It would, indeed be very unlikely that what is clearly an acquired disorder (fibromyalgia) could be an integral part of what is clearly a genetic one (HMS/EDS). More likely, the fibromyalgia should be regarded as a signal emanating from a distressed HMS/EDS person. But fibromyalgia occurs only uncommonly in the HMS/EDS. We must look further afield.

It seems quite likely that there may be a totally different explanation for the burden of pain borne by people with the HMS/EDS.

Here are two clues:

The first clue relates to the sense called proprioception, which means knowing where parts of one's body are in space. If you close your eyes and somebody bends your finger for you or picks your arm up, you know immediately how far your finger is bent or where your arm now is. That is because you have good proprioception. Scientists have shown that people with the HMS/EDS are not quite as good as other people in knowing exactly where their fingers or arms etc are in space. This could lead to a further increase in the risk of injury.

The second clue is the discovery that patients with the HMS/EDS for some
reason do not appear to experience the full anaesthetic affect of lignocaine injections when these are given for dental purposes, minor surgery or for epidural anaesthesia (I wonder how many readers are nodding their heads as they read this!).

At the present time we do not know quite what either of these clues means or whether they relate to one another. But they do suggest that people with the HMS/EDS, in addition to their proneness to injury, dislocation and osteoarthritis, may also have a fault in the way their pain signals are picked up for onward transmission to the brain, where they reach consciousness. Research work is in progress to try to sort out this enigma. Much more needs to be done. Watch this space!

Readers will know that many conventional methods of treatment, of the kind offered for rheumatic complaints in general, are not particularly helpful in the HMS/EDS. Physiotherapy still carries the best prospect for pain relief, and it is encouraging that more physiotherapists are training in methods that are helpful in this condition. Another noteworthy development is the network of units throughout the country that are offering pain management programmes, an approach which has been shown to be beneficial in the HMS/EDS where intractable pain is present.

Source: http://www.hypermobility.org/