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Fibromyalgia and EDS-H / JHS
Fibromyalgia is a long-term condition which causes widespread pain and extreme tiredness. People with fibromyalgia may also have difficulty sleeping, muscle stiffness and headaches. Symptoms tend to vary from person to person and from day to day.
The exact causes are not known, but there are certain changes in the way the body functions, which have been noticed in people with fibromyalgia, including disturbed pain messages, low levels of hormones, sleep problems. However, it is not yet clear what causes these changes in the first place and how they lead to fibromyalgia.
'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.' (Quote: Prof Rodney Grahame)
Some specialists would classify Fibromyalgia to be a co-morbidity of hypermobility i.e. 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. These specialists would class Fibromyalgia is an 'acquired' disorder, whereas EDS-H / JHS would be classed as a 'genetic' ones. Others would disagree. For example, Dr Jamie M Bravo MD states: 'Many patients diagnosed as having Fibromyalgia really have Joint Hypermobility Syndrome... It is my opinion that Fibromyalgia is part of the Joint Hypermobility Syndrome, since all patients with Fibromyalgia that I see fulfill the Brighton criteria that is diagnostic for Joint Hypermobility Syndrome. We'd call these pains “fibromyalgic pains of Joint Hypermobility Syndrome”.
It is estimated that fibromyalgia affects nearly 1 in 20 people worldwide. In England and Wales, there could be up to 1.76 million adults with the condition. Fibromyalgia affects more women than men. In most cases, fibromyalgia develops between 30 and 60 years of age, but it can occur in people of any age, including children and the elderly.
Fibromyalgia can be a difficult condition to diagnose because there is no specific test and the symptoms can be similar to those of other conditions. Diagnosis is usually based on your symptoms and tests to rule out other conditions. There is currently no cure for fibromyalgia. Symptoms are usually permanent, although they can vary in severity. However, there are a number of treatments that may ease symptoms and make the condition easier to live with. Treatment tends to be a combination of medicines, such as antidepressants and painkillers and self-help management strategies such as those listed towards the bottom of this page.
Pain: If you have fibromyalgia, one of your main symptoms is likely to be widespread pain. This may be felt throughout your body, but could be worse in particular areas, such as your back or neck. The pain is likely to be continuous, although it may be better or more severe at different times.
The pain could feel like an ache, a burning sensation, a sharp stabbing pain
Stiffness: Fibromyalgia can make you feel stiff. The stiffness may be most severe when you have been in the same position for a long period of time, such as when you first wake up in the morning. Fibromyalgia can also cause your muscles to spasm, which is when they contract (squeeze) tightly and painfully. This can affect your sleep.
Fatigue: Fatigue (extreme tiredness) as a result of fibromyalgia can range from a mild, tired feeling to the exhaustion often experienced during a flu-like illness. Sometimes, severe fatigue may come on very suddenly and can drain you of all your energy. If this occurs, you may feel too tired to do anything at all.
Poor quality sleep Fibromyalgia can affect your sleep. You may find you often wake up tired even when you have had plenty of sleep. This is because fibromyalgia can sometimes prevent you from sleeping deeply enough to refresh you properly. You may hear this described as ‘non-restorative sleep’.
Cognitive problems ('fibro-fog'): Cognitive problems are problems with mental processes, such as thinking and learning. If you have fibromyalgia, you may have trouble remembering and learning new things, problems with attention and concentration, slowed or confused speech
Headaches: If you have pain and stiffness in your neck and shoulders from fibromyalgia, you may also have frequent headaches. These can vary from being mild headaches to severe migraines, which may also involve other symptoms, such as nausea (feeling sick).
Irritable bowel syndrome (IBS): If you have fibromyalgia, you may develop irritable bowel syndrome (IBS) as well. IBS is a common digestive condition that causes pain and bloating in your stomach. It can also cause constipation (when you are unable to empty your bowels) and diarrhea (passing loose stools)
Below Dr Faber of the Milwaukee Pain Clinic expresses his views on Fibromyalgia as a co-morbid of, or possibly a mis-diagnosis of, what is actually undiagnosed Hypermobility Syndrome:
'Fibromyalgia is diagnosed in many female patients, often in their 40’s. Their complaints involve headache, migraine, neck, shoulder, arm, hand, back pain, fatigue and lack of endurance. Often they may have other complaints such as poor sleep. Frequently their pain shifts from area to area. Fibromyalgia patients usually are placed on non-steroidal anti-inflammatory medicines and antidepressants. Fibromyalgia patients may be placed on the popular drugs Baclofen and Neurontin. Exercise is also often recommended. The above are only minimally successful in relief. Fibromyalgia patients seem to note some relief with gentle manipulation and massage. These methods also offer only temporary relief.
In my professional experience often the greatest symptom is lack of endurance and the need to change positions. The pain discomfort is often described as a pulling or aching which worsens with time to a rather severe pain. It lessens with changing from standing to sitting or from these positions to lying. This cycle, of course, repeats as a chronic complaint. Often times the joints will be noted to crack and pop.
Undiagnosed Hypermobility Syndrome
My examinations have almost always revealed an undiagnosed hypermobility syndrome of the congenital or benign types. Although there are many conditions which have joint hypermobility such as Ehler-Danlos, Marfans, rheumatoid, post-polio and other syndromes; by far the most common is the congenital or benign hypermobility syndrome. These people often note that they are very flexible but they thought it was good. Actually the medical literature states it is commonly missed as a diagnosis. If it is noted it is not understood. Joints have two functions, mobility and stability. If the mobility is in excess as in hypermobility syndrome this mobility is obtained at the expense of stability. It is this instability that yields the plethora of problems. These are not limited to those mentioned earlier, but also include flat feet, bunions, scoliosis, joints popping out of place and arthritis.
The problem of hypermobility is considered sex influenced with more females affected than males. Men of course have the problem but are rarely diagnosed as fibromyalgia. They are like some of the women diagnosed by the area affected. These people can be labeled as almost any musculoskeletal diagnosis or even neurological diagnoses from carpal tunnel syndrome, rotator cuff, migraine cephalgia, osteoarthritis, anterior cruciate tear, temporal mandibular joint dysfunction, spondylolisthesis and others. The cause of the congenital or benign hypermobility is that through genetics the body doesn’t make enough collagen or doesn’t make a good quality collagen. Collagen is the principle structural protein of the body. The ligaments, tendons, cartilage, discs and connective tissue are all made from this collagen; hence the whole body is structurally weakened. Many of the women became symptomatic at age 40 and were incorrectly diagnosed and therefore ineffectively treated. Because of the structurally weaker collagen protein, all things having to do with structural support are more prone to problems. Some of these are flat feet, bunions, varicose veins, knee deformities and arthritis, patellar tracking dysfunction, hernias, hemorrhoids, spondylolisthesis, scoliosis, low back problems, thoracic problems, neck problems, shoulder problems, wrist and hand problems, heart valve defects, temporal mandibular joint problems, neck problems often causing various headache and balance problems. Of course all of the above give rise to the “fibromyalgia” type symptoms of hurt all over, lack of endurance, malaise, and fatigue...The above are purely my viewpoints and experiences that often times are not shared by other experts.'
Although it is unlikely that symptoms of fibromyalgia will disappear completely, below are some tips, which, in addition to any treatments or medications prescribed by your doctor can be used to try and manage the condition:
Exercise: As fatigue (extreme tiredness) is one of the main symptoms of fibromyalgia, you may find you often feel unable to exercise. However, an exercise programme specially suited to your condition can help manage your symptoms, as well as improve your overall health. Your GP or physiotherapist (healthcare professional trained in using physical techniques to treat Fibromyalgia) can design you a personal exercise programme which is likely to involve some aerobic exercise, such as walking or swimming and some strengthening exercises. If you are suffereing from fibromyalgia as a secondary symptom or comorbid of EDS-H / JHS, the type of strengthening exercises should be based on the methods mentioned in ‘Physiotherapy and EDS-H / JHS’ under the ‘Helpful Information’ section of the website.
Relaxation: In Fibromyalgia and EDS-H / JHS it is important that you regularly take time to relax, or practice relaxation techniques. Stress can make your symptoms worse or cause them to flare up more often.
There are many relaxation aids available, including books, tapes and courses, although deep-breathing techniques or meditation may be just as effective. Try to find time each day to do something that relaxes you. Taking time to relax before bed may also help you sleep better at night.
Improve your sleeping habits: Fibromyalgia can make sleeping difficult. The following advice is aimed at people with insomnia (difficulty getting to sleep or staying asleep), but may also help if your fibromyalgia is affecting your sleep:
go to bed and get up at the same time every night and morning
try to relax before bed (see above)
avoid caffeine, nicotine and alcohol before going to bed
avoid eating a heavy meal late at night
make sure your bedroom is a comfortable temperature, and is quiet and dark
Pace yourself: Pacing involves balancing periods of activity with periods of rest. It means not overdoing it or pushing yourself beyond your limits. If you do, it could slow down your progress in the long term. Over time, you can gradually increase your periods of activity, while making sure they are balanced with periods of rest.
If you have fibromyalgia, it is likely you will have some days when your symptoms are better than other days. Try to maintain a steady level of activity without overdoing it. Listen to your body and slow down and rest whenever you need to.
Avoid any exercise or activity that pushes you too hard, because this can make your symptoms worse. If you pace your activities at a level right for you, rather than rushing to do as much as possible in a short space of time, you should make steady progress.
References: For references and information sources used within this site, please see 'References', under 'Resources and Links' on the main menu.