Factors that maintain the illness are:
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Doing too much or being too active or lurching between over and under activity, which is otherwise known as ‘boom and bust’.
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Sleep problems, which are very common with M.E. reduce energy levels even further.
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Mood disorders such as depression and anxiety reduce a person's ability to cope with the illness.
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Whilst rest is very important, doing too little or being inactive may be detrimental. Prolonged inactivity can cause muscle wasting and weakness. However, in the early stages of the illness or during a relapse, a period of inactivity may help.
M.E. is a highly variable illness, a wide range of symptoms can occur and these may change during the course of the illness. The central feature of M.E. is the way in which symptoms behave. Fatigue, malaise, muscle pain and other symptoms are characteristically provoked by increased activity of any type, usually with delayed impact. This is seen with the highly common symptom of persistent and overwhelming fatigue. This feels very different to the everyday tiredness experienced by a healthy person and is described as being distinctive in its type and pattern.
Physical or mental exertion provokes increased fatigue and a profound lack of energy; the effect can be associated with malaise and an increase in the other symptoms.
Symptoms of M.E.:
- Persistent fatigue
- Post-exertional malaise (a general feeling of being unwell after normal or mental activity which can include flu like symptoms)
- Pain-painful or aching muscles, painful or aching joints, nerve pains, headaches or migraines.
- Cognitive impairment- reduced attention span, short-term memory problems, word-finding difficulties, inability to plan or organize thoughts, spatial disorientation, loss of powers of concentration.
- Sleep disturbance- unrefreshing sleep, waking in the early hours, light dreamy restless sleep, insomnia problems getting to sleep, and hypersomnia sleep lasting for long periods.
- Other nervous system symptoms- a feeling of poor temperature control, dizziness in standing up, balance difficulty, increased sensitivity to light and sound.
- Recurrent sore throat (with or without swollen lymph nodes)
- Digestive disturbances- nausea, loss of appetite, indigestion, excessive wind, bloating, abdominal cramps, alternating diarrhoea and constipation.
- Intolerances and increased sensitivity- to alcohol, some foods, some medications, other substances
It is vital that problematic symptoms are. The most common symptoms that can take over and get in the way of recovery are sleep disorders, pain and mood problems like depression and anxiety. A GP will be able to assess the situation and discuss medication, therapies and self-help strategies that can be beneficial.
Many people find that their condition woth M.E. stabilises once they accept their illness, understand how it works, and follow a realistic and achievable approach to getting better. Learning to effectively manage activity and energy levels is key to managing the illness and this is known as pacing. The concept behind pacing is that if energy is managed wisely it will gradually increase. Pacing can bring structure to the day and give back a sense of control.
With graded exercise/ activity the focus is on gradual but progressive increases in aerobic exercise, such as walking or swimming and everyday activities such as taking a bath or speaking to a friend. Some evidence suggests that the inactivity and resulting loss of fitness (deconditioning) that occurs with M.E. can make the illness last longer and that graded exercise/ activity can help to reverse this. Also, by reintroducing activities avoided previously, your confidence will improve.
Cognitive behavioural therapy (CBT) is used to support and help people through all sorts of illnesses. It can help to adjust to some of the consequences of being unwell and help to feel more in control of the illness. As with other illnesses such as cancer, its use does not imply that the cause of the illness is psychological.
Special diets and nutritional supplementation can be a source of great confusion for people with M.E. There is a lot of conflicting advice and very little high quality scientific evidence to help you reach an informed decision.
People with M.E. often seem to experience gut problems such as Irritable Bowel Syndrome (IBS) and it appears to be relatively common to develop an intolerance to certain foods such as wheat or dairy. Some people have difficulty maintaining their weight and sometimes nausea and a loss of appetite can be problematic. People who are more severely affected can have difficulties feeding themselves adequately. Other people find that because their activity levels decrease, they put on extra weight. If you have any worries or concerns about these sorts of problems or if you want to try a new approach to managing a dietary problem it is best to discuss them with your GP or specialist. It may be appropriate for you to be referred to another doctor or a dietician for a full assessment.
If you have stomach or gut problems that seem to be part of your M.E., it may be because you have become intolerant of certain foods. The most common problems are not tolerating higher fibre diets (cereals, brown bread, etc), wheat or sometimes dairy products. It may be worth trying to avoid these (one at a time, each for a few weeks) to see if that makes a difference. If you plan to cut something out of your diet long-term, seek the advice of your GP or specialist and/ or a dietician. It is important that people with M.E. have a balanced diet and an adequate intake of fluids – about two litres a day.
Fibromyalgia
Not only did Karen suffer from M.E. but she also unfortunately suffered from Fibromyalgia for a long period of time.
FMS (Fibromyalgia syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.
Most patients with FMS say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with FMS, and it shows up in people of all ages.
With Fibromyalgia every muscle in the body is in excruciating pain. In addition, a sufferer feels devoid of energy. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state. This similarity is the reason experts in the field of FMS and chronic fatigue syndrome (CFS) believe that these two syndromes may be one and the same.
Symptoms and associated syndromes.
Pain - The pain of FMS has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.
Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.
Sleep disorder - Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that most FMS patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.
Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck – what doctors refer to as unrefreshing sleep – it is reasonable for your physician to assume that you have a sleep disorder. Many FMS patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea, sleep myoclonus (nighttime jerking of the arms and legs), and restless legs syndrome. A newly discovered sleep disorder, upper-airway resistance syndrome, is also being evaluated for its association with FMS.
Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of FMS patients.
Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 50% of FMS patients and can pose a major problem in coping for this patient group.
Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one quarter of FMS patients. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.
Other common symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Patients are often sensitive to odours, loud noises, bright lights, and sometimes even the medications that they are prescribed.
Aggravating factors - Changes in weather, cold or draughty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to symptom flare-ups.
Possible causes:
The cause of FMS remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that is already present.
What could this abnormality be? Theories pertaining to alterations in pain-related chemical transmitters, immune system function, sleep physiology, and hormonal irregularities are under investigation. In addition, modern brain imaging techniques are being used to explore various aspects of brain function. The body's response to exercise, stress, and alterations in the operation of your autonomic nervous system are also being evaluated.
Traditional treatments are geared toward improving the quality of sleep and reducing pain. Sleep is crucial for many body functions (such as tissue repair, antibody production). Therefore, the sleep disorders that frequently occur in FMS patients are treated first because they may be a strong contributing factor to the symptoms of this condition. Medications that boost your body's level of serotonin and norepinephrine (neurotransmitters that modulate sleep, pain, and immune system function) are commonly prescribed in low doses, such as amitriptyline, cyclobenzaprine and Celexa. Ambien, clonazepam, and trazodone are just a few of the medications that may be used to aid sleep. Ultram may help with the pain, although stronger opioids may be needed for treating moderate to severe pain. Muscle relaxants and other drug categories may be prescribed as well.
In addition to medications, most patients will need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, occupational therapy, acupuncture, acupressure, relaxation/biofeedback techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program.
Prognosis:
Long term follow-up studies on FMS have shown that it is chronic. The impact that FMS has on daily living activities, including the ability to work a full-time job, differs among patients. Overall, studies show that FMS may be equally as disabling as rheumatoid arthritis.