Fibromyalgia
Fibromyalgia literally means “pain in connective tissue and muscles“. Fibro refers to connective tissue, the tissue that connects muscles with bones (it is also in haircuts and ligaments in your joints), myo points to muscle tissue and algie indicates pain.
Patients have had physical complaints for some time, for which the doctor could not find a cause of illness. Fibromyalgia is not an inflammatory condition and research suggests it is caused by abnormal sensory processing in the central nervous system. People with fibromyalgia may be extremely sensitive to pain and other unpleasant sensations.
To be diagnosed with fibromyalgia, one must experience pain on both sides of the body and in both the upper and lower half of the body (the tenderpoints). The pain and tenderness tend to come and go and move about the body. The pain occurs especially in the muscles, tendons and ligaments, which are the soft parts of the body. Fibromyalgia does not damage the painful muscles, tendons and ligaments, but causes chronic pain, which may be accompanied by symptoms such as stiffness, (severe) fatigue, sleep disturbances, loss of strength or tingling in arms or legs, mood swings, difficulty concentrating, forgetfulness, burning or diminished sensation in the skin, headache, intestinal cramps, abdominal pain, irritable bowel syndrome, swollen fingers and memory loss.
Fibromyalgia is counted among the Somatic Symptom Disorders, which are characterized by:
• the patient experiencing specific sensations, such as pain, shortness of breath or more general symptoms, such as fatigue or weakness.
• the symptoms are not related to any medical cause that can be identified, but are more significant to the patient than what’s usually expected.
• the patient having a single symptom, multiple symptoms or varying symptoms and they may be mild, moderate or severe.
More recently, fibromyalgia has been described as a Central Pain Amplification disorder, meaning the volume of pain sensation in the brain is turned up too high.
Fibromyalgia is a neurologic health problem that causes widespread pain and tenderness (sensitivity to touch) and it is possible that there is not one cause for fibromyalgia, but the complaints are the result of a complex interaction of physical, psychological and environmental factors.
Age. Fibromyalgia affects 2 to 4% percent of people in the US and the disease is more common in women than in men. It most often starts in middle adulthood, but can occur also in the teen years and in old age.
Risk. You have a higher risk for getting fibromyalgia if you have a rheumatic disease (affecting the joints, muscles and bones). These diseases include osteoarthritis, lupus erythematosus, rheumatoid arthritis, or ankylosing spondylitis.
Cause of fibromyalgia
The causes of getting fibromyalgia are unclear. Patients have had physical complaints for some time, for which the doctor could not find a cause of illness. Fibromyalgia is not an inflammatory condition and research suggests it is caused by abnormal sensory processing in the central nervous system (brain and spinal cord). People with fibromyalgia are extremely sensitive to pain, accompanied by other unpleasant symptoms. No abnormalities in the muscles and joints can be found in people with fibromyalgia. Fibromyalgia is not an autoimmune, inflammated joint, or muscle disorder. So probably there is not one cause for fibromyalgia, but the complaints are the consequence of a complicated interaction between internal-biological, psychological-social and external-physical factors.
Biological factors
• sleep disturbances. Your symptoms can occur if you have a sleep deprivation or if your day-night rhythm is disturbed.
• disregulation of the pituitary hypothalami-adrenal axis/dysfunction of the autonomic nervous system. This provides extra cortisol production in the adrenal glands in response to an anxiety or stress stimulus, which, for example, leads to increased insulin resistance, serotonin decline and increased gastric acid secretion.
• viral infections.
• lack of oxygen in the muscles (mitochondrial dysfunction).
• a disturbed control of the muscles from the brain. The brain controls the functioning of the muscles in interaction with the hormone system. There are researchers who think that there are changes in this interaction in people with fibromyalgia, which would disrupt this cooperation between brain, hormone system and muscles. People with fibromyalgia often have a lot of tension in their muscles. The origin of this disturbance is unknown. It is also not clear whether this disturbance is a consequence or a cause of fibromyalgia.
• disruption of the central pain system/imbalance neurotransmitters. The processing of pain stimuli through the nerves in the brain and spinal cord is disrupted if you have fibromyalgia, so you experience a small pain stimulus as very painful.
• relationship with nutrition and poor functioning of the intestines.
• chronic musculoskeletal pain without a clear pain location or irritation of the small pain nerve cells (nociceptors) in the skin.
• hypersensitivity to pain stimuli. Increased irritability of the central neurons (dorsal horn of the spinal cord) leads to reinforcement of pain stimuli, sleep problems, fatigue, concentration problems and hypersensitivity to light, sound, medication and cold/heat stimuli.
Psychological-social factors
• psycho-social factors
– having negative emotions (dejected, angry, powerless or sad).
– having anxiety (for exercise, for pain or for a serious illness).
– having stress (not being able to meet the demands of the environment or the demands you make on yourself).
– the accumulation of tension, anger or grief.
– experiencing overloading (wanting too much at once, planning too many appointments consecutively, always waiting for others or continuing until something is finished).
– the pressure of conflict situations (at work or in the family).
– possibly an increased presence of psychiatric syndromes including, for example, depression and panic disorders. This is not specific for people with fibromyalgia. These syndromes also occur in other chronic pain patients and rheumatoid arthritis patients.
• personality factors
There is insufficient scientific substantiation for this.
Physical factors
• a deteriorated physical condition.
• avoiding movement.
• too much attention focused on the sore spots in the body.
Age and gender. Fibromyalgia is most common in women. The complaints usually start between the 25th and the 50th year of life.
Genetic predisposition. A hereditary predisposition can play a small part in the development of fibromyalgia. Fibromyalgia may run in families. There may be several people with the genetic predisposition of fibromyalgia in your family, but you can be the only one actually with fibromyalgia complaints. There likely are certain genes that can make people more prone to getting fibromyalgia and the other health problems that can occur with it.
Genes alone, though, do not cause fibromyalgia. There is most often some triggering factor that sets off fibromyalgia. It may be spine problems, arthritis, injury or other type of physical stress. Emotional stress also may trigger this illness. The result is a change in the way the body “talks” with the spinal cord and brain. Levels of brain chemicals and proteins may change. More recently, fibromyalgia has been described as Central Pain Amplification disorder, meaning the volume of pain sensation in the brain is turned up too high.
Medically benign. Although fibromyalgia can affect quality of life, it is still considered medically benign. It does not cause any heart attacks, stroke, cancer, physical deformities, or loss of life.
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Complaints with Fibromyalgia
Fibromyalgia has a major impact on your daily life (family life, social contacts, work and leisure). How much you notice of the disease in your daily life can be very different. What you can handle every day can be different every time. Fibromyalgia is a neurologic chronic health condition that causes pain all over the body, accompanied by other symptoms.
• Pain
The characteristic feature of fibromyalgia is an altered pain processing. You have earlier and/or more (severe) pain. This is noticeable by the sensitivity to normal touches, the longer duration of pain and the appearance of the pain over a larger area of your body. You have pain in and stiffness of the muscles and pain in the attachments of the tendons on the bones in your body. You have pain in your back, neck or shoulders and often in the sternum, the side of the hips and the inside of the knee. The pain often worsens with the weather, due to stress, anxiety or physical exertion.
How you experience this pain can differ. Some people with fibromyalgia describe the pain as stabbing, while others call it painful or burning. The symptoms in fibromyalgia are not the result of damage to the body and do not lead to damage.
• Stiffness
The stiffness is the most severe in the morning. Sometimes getting out of bed can be very difficult. Even if you are sitting still or standing in the same position for a long time, you may find it difficult to move again. The stiffness decreases during the day.
• Loss of force
You may experience that your muscles are less powerful. This allows you to have more trouble with certain actions, such as carrying bags when shopping or sitting down and getting up again.
• Fatigue
The often severe fatigue comes from the pain (pain costs energy) and sleep problems. You fall asleep exhausted and wake up from the pain at night.
• Sleeping problems
Many people with fibromyalgia do not sleep well because their mind is constantly busy worrying. They wake up still feeling tired.
• Depressed feelings and concentration problems
If you have constant physical symptoms such as pain and fatigue, this can spoil your mood considerably. For example, you can suffer from depression or anxiety. You can also suffer from concentration problems, forgetfulness, problems with memory or thinking clearly and difficulty making decisions.
• Hypersensitivity to cold
Some people with fibromyalgia have more problems when it gets cold or damp outside. Though the climate itself has no influence on the development of fibromyalgia.
• Tenderness to touch or pressure
This affects muscles and sometimes joints or even the skin.
• A tingling sensation in arms and/or legs
• Migraine or tension headaches
• Digestive problems
These are caused by the irritable bowel syndrome (commonly called IBS) or gastroesophageal reflux disease (often referred to as GERD). The patient has an irritable bowel with intestinal cramps and abdominal pain.
• An irritable or overactive bladder
• A heavy feeling in the legs or arms
• The skin feels burning or deaf (reduced feeling)
• Pelvic pain
• Temporomandibular disorder (TMJ). This is a set of symptoms including face or jaw pain, jaw clicking and ringing in the ears.
Factors that can play a role in strengthening and continuing your complaints:
• Too much attention for pain complaints. If you do not know what the cause of your pain is, you become extra focused on it and pay more attention to the pain. The more you focus on the pain, the stronger it is felt. You experience less pain through distraction.
• Avoiding activities for fear of (more) complaints or out of uncertainty, so that your physical fitness decreases. Avoiding social and other activities also ensures that your living environment diminishes and you have less contact with others.
• Overload. You can also become overactive in exercising to displace pain and fatigue. This can lead to more physical complaints.
• Doom thinking. If the complaints do not go away, your thoughts will become gloomy (I am always tired or I will never lose that pain again). Because of these thoughts, the pain and other complaints can be experienced as worse.
You can learn to cope with the symptoms of fibromyalgia and improve your physical condition.
Diagnosis in Fibromyalgia
Your doctor will base your diagnosis on a combination of the medical history, his findings and additional test results.
Anamneses
At the first visit, the doctor asks you a number of questions to get a good picture of your condition. You can think of the following questions:
– When did your complaints start?
– Can you describe your complaints?
– How are your working conditions?
– What medication do you use?
– Do rheumatic diseases occur in your family?
– What is your medical history?
– Are you under the treatment of other specialists and for what?
Fibromyalgia is difficult to diagnose. Complaints, such as fatigue, pain and stiffness also occur in many other disorders. A doctor will try to diagnose fibromyalgia based on your symptoms.
Physical examination
Doctors may require that you have tenderness to pressure or tender points at a specific number of certain spots before being able to say you have fibromyalgia, but they are not required to make the diagnosis. A physical exam can be helpful to detect tenderness and to exclude other causes of muscle pain. There are no diagnostic tests (such as X-rays or blood tests) to diagnose fibromyalgia.
Yet, you may need tests to rule out another health problem that can be confused with fibromyalgia. The doctor may have blood tests carried out to exclude, for example, anemia and the presence of inflammatory values, which may indicate a different rheumatic disease.
Because widespread body pain is the main feature of fibromyalgia, health care providers will ask you to describe your pain. This may help tell the difference between fibromyalgia and other diseases with similar symptoms. Other conditions such as hypothyroidism (under active thyroid gland) and polymyalgia rheumatica sometimes mimic fibromyalgia. Blood tests can tell if you have either of these problems. In fibromyalgia, additional examinations, such as blood tests or X-rays, will show no abnormalities. Sometimes, fibromyalgia is confused with rheumatoid arthritis or lupus erythematosus. But, again, there is a difference in the symptoms, physical findings and blood tests that will help your health care provider detect these health problems. Unlike fibromyalgia, these rheumatic diseases cause inflammation in the joints and tissues.
Tenderpoints
In 1990 the American College of Rheumatology (ACR) developed criteria for the classification of fibromyalgia:
• Chronic pain and/or stiffness, present for at least three months, in three or more places in the body, both above and below the waist, both left and right in the body.
• Having pressure pain points (11 or more of the 18), the tender points, at the agreed places. People with fibromyalgia can have 18 tender points (pressure points) on the body. The tender points are certain specific pain points in the neck, shoulders, lumbar region and hips of the body. A pressure point is considered positive if you indicate that pressing with a finger hurts at that location. A place where it is indicated that this is only sensitive to pressure must be called negative. The test is positive for fibromyalgia if pain is experienced in 11 of the 18 tender points. The pain points must always be compared with fixed control points. The amount of tender points can increase or decrease over time. In addition, other areas can also be painful or pain can be caused by touching them.
Fibromyalgia score, pain score and symptom score
In 2010, the American College of Rheumatology (ACR) renewed the criteria for the classification and diagnosis of fibromyalgia. The following three conditions must be met:
• Pain and other symptoms have been present for at least three months. Pain and symptoms over the past week, based on the total of number of painful areas out of 19 parts of the body plus level of severity of these symptoms: fatigue – waking up unrefreshed – cognitive (memory or thought) problems. The symptoms lasting at least three months at a similar level.
• No other disease has been found.
• The fibromyalgia score (the addition of the pain score and the symptom score) is at least 12, the pain score is at least 3 and the symptom score is at least 5.
Based on the above results, your doctor can make a diagnosis after exclusion of other diseases by additional examination.
Tenderpoints
In 1990 the American College of Rheumatology (ACR) developed the first criteria for the classification of fibromyalgia:
• Chronic pain and/or stiffness, present for at least three months, in three or more places in the body, both above and below the waist, both left and right in the body.
• Having pressure pain points (11 or more of the 18), the tender points, at the agreed places. People with fibromyalgia can have 18 tender points (pressure points) on the body. The tender points are certain specific pain points in the neck, shoulders, lumbar region and hips of the body. A pressure point is considered positive if you indicate that pressing with a finger hurts at that location. A place where it is indicated that this is only sensitive to pressure must be called negative. The test is positive for fibromyalgia if pain is experienced in 11 of the 18 tender points. The pain points must always be compared with fixed control points. The amount of tender points can increase or decrease over time. In addition, other areas can also be painful or pain can be caused by touching them.
Tender points occur on two sides of the body and should also hurt on both sides, both left and right.
The pressure points are:
• at the base of the back of the skull on both sides of the neck vertebrae, so where the neck in the head passes.
• halfway the top shoulder line.
• from there about 4.5 to 5 centimeters downwards and slightly towards the middle on the shoulder, as it were along the shoulder line on the side of the spine.
• in the front of the neck, just above the collarbone.
• at the bottom of the collarbone, where the collarbone is attached to the sternum.
• on the inside of the elbow, about two centimeters below the crease of the elbow.
• at the top of the hips, a few centimeters away from the spine.
• on the side of the hips under the buttocks.
• on the inside of the knee, about two centimeters above the kneecap.
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Fibromyalgia score, pain score and symptom score
In 2010, the American College of Rheumatology (ACR) renewed the criteria for the classification and diagnosis of fibromyalgia. The following three conditions must be met:
• Pain and other symptoms have been present for at least three months.
• No other disease has been found.
• The fibromyalgia score is at least 12, the pain score is at least 3 and the symptom score is at least 5.
– Fibromyalgia score: the fibromyalgia score is obtained by adding up the pain score and the symptom score. The fibromyalgia score ranges from 0 (no symptom) to 31 (major physical complaints). The fibromyalgia score can give an impression of the severity of the complaints. The more complaints and the more intense the symptoms, the higher the score. But your doctor may also conclude that you have fibromyalgia at a lower outcome on the basis of your symptoms.
– Pain score: the doctor records which 19 places in the body there were pain during the past week (a score of 1 for each painful area). These sore spots in the body count towards the score. Painful spots may occur in the breasts, abdomen, upper back, lower back, neck, left shoulder girdle, right shoulder girdle, upper arms, forearms, hip area (buttock, trochanter), upper legs, lower legs and jaw.
The lowest possible pain score is 0 and the highest possible score is 19. If you have pain on six spots in the body, you have a pain score of 6.
– Symptom score: for each of the three symptoms below, it is noted how bad the symptom was during the past week:
– fatigue.
– unwelcome awakening.
– difficulty thinking and concentrating.
Each symptom gets a score:
0 = no problem.
1 = mild or mild problems, usually mild or intermittent.
2 = moderate to significant problems that are often present and/or experienced as significant.
3 = serious: serious, continuous, life-disturbing problems.
The symptom score is the sum of the severity of the three symptoms (fatigue, uncomfortable awakening and difficulty thinking and concentrating) plus the number of additional symptoms. If, for example, someone has severe fatigue (score 3), moderate to significant problems with unqualified awakening (score 2), no problems with thinking and concentration (score 0) and many additional symptoms (score 3), then the symptom score is 8.
Additional symptoms: it also checks how many additional symptoms you have. A list is used with 42 mainly physical symptoms, such as irritable bowel, bladder symptoms, headache or dry eyes.
0 = no symptoms.
1 = few symptoms.
2 = significant number of symptoms.
3 = many symptoms.
Treatment for fibromyalgia
There is no cure for fibromyalgia. The treatment of fibromyalgia is mainly aimed at reducing the annoying symptoms such as muscle pain and fatigue. You can discuss with the doctor or specialist how you can best deal with the pain and stiffness. You can also discuss with the doctor whether he can refer you to another counselor to help you better deal with the complaints. The treatment focuses on learning to deal with the complaints and the consequences of fibromyalgia in your daily life. The symptoms can be treated with both non-drug and drug based treatments. Many times the best outcomes are achieved by using multiple types of treatments.
Non-Drug Therapies
Research shows that the most effective treatment for fibromyalgia is physical exercise. The treatment can consist of the following elements:
• information about fibromyalgia. Learn everything about fibromyalgia and explain to your living and working environment what it means to live with this disease.
• lifestyle advice. Work independently on building your physical fitness and activities, distributing your energy throughout the day and making sure of the change in your lifestyle (self-management).
• exercise therapy. Learn to distribute your energy as well as possible and to rebuild your physical condition. Exercise every day.
• cognitive behavioral therapy (psychologist). Get information on which factors can make the pain worse or less bad. You will learn to recognize and address these factors. Cognitive behavioral therapy (CBT) is a type of therapy focused on understanding how thoughts and behaviors affect pain and other symptoms. CBT and related treatments, such as mindfulness, can help patients learn symptom reduction skills that lessen pain. Mindfulness is a non-spiritual meditation practice that cultivates present moment awareness. Mindfulness based stress reduction has been shown to significantly improve symptoms of fibromyalgia.
• combination of exercise and cognitive behavioral therapy. Physical exercise should be used in addition to any drug treatment. Patients benefit most from regular aerobic exercises. Cognitive behavioral therapy (CBT) and related treatments, such as mindfulness, can help patients learn symptom reduction skills that lessen pain.
• Other body-based therapies. Tai Chi and yoga can ease fibromyalgia symptoms. Although you may be in pain, low impact physical exercise will not be harmful. Other complementary and alternative therapies (sometimes called CAM or integrative medicine), such as acupuncture, chiropractic and massage therapy can be useful to manage fibromyalgia symptoms. Many of these treatments, though, have not been well tested in patients with fibromyalgia.
Risk factors and triggers
It is important to address risk factors and triggers for fibromyalgia including sleep disorders, such as sleep apnea and mood problems such as stress, anxiety, panic disorder and depression. This may require involvement of other specialists such as a sleep medicine doctor, psychiatrist, and therapist.
Drug treatment
Drugs without a prescription
• For the pain you can get a simple painkiller with the active ingredient paracetamol without a prescription. Paracetamol helps against pain and fever, does not cause stomach problems, usually does not cause side effects and can be easily combined with other medications.
• An NSAID, an anti-inflammatory analgesic in a lower dose. The abbreviation NSAID stands for Non-Steroidal Anti-Inflammatory Drugs. These painkillers inhibit inflammation. Over-the-counter drugs such as NSAIDs like ibuprofen (Advil, Motrin) or naproxen (Aleve, Anaprox) are not effective for fibromyalgia pain. Yet, these drugs may be useful to treat the pain triggers of fibromyalgia. Thus, they are most useful in people who have other causes for pain such as arthritis in addition to fibromyalgia.
• Acetaminophen (Tylenol) is also most useful in people who have other causes for pain such as arthritis in addition to fibromyalgia. Acetaminophen is the generic name for Tylenol, a pain reliever and fever reducer. Sold mainly over-the-counter to treat a variety of conditions (headaches, muscle aches, toothaches, arthritis) acetaminophen is the active ingredient not only in Tylenol but also in Panadol, Feverall and many other drugs.
Do you have physical complaints? Always go to your doctor or specialist for a proper diagnosis and proper treatment.
Drugs on prescription
This is provided by your doctor or rheumatologist or internist.
• Antidepressants. Do you have serious complaints, sleep problems or mood swings? Then the doctor can choose to start with drugs that work on the central nervous system in support of exercise therapy. Drugs that affect these brain chemicals also may be used to treat fibromyalgia. These include amitriptyline (Elavil) and cyclobenzaprine (Flexeril). The doctor can prescribe the original antidepressant amitriptyline, a medication for depression. You get much less of the drug for fibromyalgia than for the treatment of depression. The drug can reduce the pain. Amitriptyline can also work well with sleep problems. You can use it temporarily, to break the negative spiral. Side-effects include dry mouth, constipation, confusion and drowsiness.
• Duloxetine is used to treat depression and anxiety. Duloxetine is known as a serotonin-norepinephrine reuptake inhibitor (SNRI), that helps control pain levels. This medication works by helping to restore the balance of certain natural substances (serotonin and norepinephrine) in the brain. In addition, duloxetine is used to help relieve nerve pain (peripheral neuropathy) in people with diabetes or ongoing pain due to medical conditions such as arthritis, chronic back pain, or fibromyalgia. Duloxetine may improve your mood, sleep, appetite and energy level, and decrease nervousness. It can also decrease pain due to certain medical conditions. The FDA approved the use of duloxetine (Cymbalta) for chronic (long-term) musculoskeletal pain, such as occurs in osteoarthritis. Duloxetine is also in use for other health concerns, such as mood disorders, nerve pain and fibromyalgia. Next to duloxetine (Cymbalta) the doctor can also prescribe milnacipran (Savella). Both drugs were approved for treatment of fibromyalgia in the U.S. by the FDA.
Duloxetine is also originally an antidepressant, but is recognized as a means for fibromyalgia. In contrast to the amitriptyline the drug duloxetine gives less often a dry mouth, although nausea just happens a bit more often. This nausea especially occurs during the first days. Other antidepressant drugs can be helpful in some patients. Side-effects vary by the drug prescribed.
• In addition to antidepressants, it was also discovered that some drugs for epilepsy may be effective in fibromyalgia. Research has shown that the pain in a number of people by using these antidepressants and drugs against epilepsy can decrease. People can start to function better again, because people sleep better and have less problems with mood swings. A disadvantage of these drugs is that they do not work or cause side-effects in some people. Therefore, consult your doctor carefully, what the pros and cons of these drugs can do for you.
• Another drug approved for fibromyalgia is pregabalin (Lyrica) by the FDA in the U.S. Pregabalin and another drug gabapentin (Neurontin) work by blocking the over-activity of nerve cells involved in pain transmission. These drugs may cause dizziness, sleepiness, swelling and weight gain.
• Drugs for sleeping problems. Some of the drugs that treat pain also improve sleep. These include cyclobenzaprine (Flexeril), amitriptyline (Elavil), gabapentin (Neurontin) or pregabalin (Lyrica).
• Benzodiazepines. Most sleeping pills and tranquilizers prescribed by doctors for fibromyalgia are included in the benzodiazepine group. Benzodiazepines are drugs with a soothing and relaxing effect and work muscle relaxant, soothing and make you drowsy. If you use the drug for a long time, your body may get used to the drug too much. You can then become dependent on it. You may also experience side effects such as drowsiness, reduced responsiveness and increased appetite.
• Tramadol. Tramadol (Ultram) may be used to treat fibromyalgia pain if short-term use of an opioid narcotic is needed. Tramadol is a morphine-like painkiller. This drug is used in moderate to severe pain. It has a strong analgesic effect. Research shows that this drug works well in some people with fibromyalgia. But not everyone reacts well to this medication. Some people complain about the side effects of Tramadol, such as drowsiness, nausea and dizziness.
The American College of Rheumatology (ACR) does not recommend that patients with fibromyalgia take sleeping medicines like zolpidem (Ambien), benzodiazepine medications or opioid narcotic medications for treating fibromyalgia. The reason for this is that research evidence shows that these drugs are not helpful to most people with fibromyalgia, causing greater pain sensitivity or persisting pain.
Use of drugs and adherence
• It is important that you take the drugs as prescribed. In order to get your illness under control, it is very important that you take your drugs on a regular basis every day. If you do not, there is no good concentration of the drug in your blood and therefore the drug will work less well.
• Do you have trouble remembering when and how many of your drugs you should take on a daily basis and at what time of the day? Then buy a drug dispenser, in which you can sort your drugs per day.
• Do you have difficulty or objection to taking the drug prescribed to you, for example because of possible side-effects? Then that can lead to you no longer taking the drug regularly. Discuss this with your doctor!
Deterioration of your illness and/or complications
The doctor will look at:
• The dosage and amount of drugs you use.
• Switching to another drug in the same type or a completely new type of drug.
• Combining different drugs at the same time.
Your doctor can tell you
• whether the drug can work for you.
• how you can best use the drug.
• how much and how often you can use the drug.
• how you can best reduce the drug.
You should always tell your doctor or specialist
• if you use other drugs (bought or prescribed by another doctor).
• if you have another medical condition.
• whether you will be operated on soon.
• if you have previously been prescribed an anti-inflammatory analgesic that has caused side-effects.
• whether you want to become pregnant or are pregnant.
• if you are breast-feeding.
This is important because your doctor or specialist has to make a careful choice between different drugs.
Side-effects
• All drugs may have side-effects when used, so ask your doctor or pharmacist what side-effects you can expect or read the leaflet.
Reduce or stop
• If you stop using a drug yourself or reduce the number of drugs yourself, your symptoms may worsen. Always consult your doctor or specialist first if you want to use less drugs or want to stop.
Alternative treatments
There are many types of alternative treatments. This refers to all treatments that fall outside normal scientific medical care. No scientific evidence has been provided for the operation of these treatments. The alternative treatments are also called ‘complementary‘ because they can supplement the regular medical treatment by your doctor.
Many people choose an alternative treatment in addition to their regular medical treatment. They hope that this helps extra against their complaints or better helps to deal with the complaints.
Can an alternative treatment be a replacement for your regular medical treatment?
No, if you opt for an alternative treatment method, it is always a supplement to your regular medical treatment. You should not stop your regular treatment, because otherwise you run unnecessary health risks. Always consult your attending doctor before you start an alternative treatment.
What alternative treatments are there for example?
There are many different alternative treatment methods available, which can also be combined. Some examples are:
• Chinese medicine (acupuncture, pressure point massage, nutrition and tai chi).
• homeopathy (products made from plants and minerals).
• Bowen therapy.
• Ayurveda.
• Bach flower treatment.
• shiatsu, foot-sole and classic massage.
• Touch for Health.
• Reiki.
• dietary supplements.
What do you have to pay attention to?
• Many alternative treatments have not shown that they actually work. If you choose to try alternative treatment, make sure that your complaints do not increase. Stop an alternative treatment as soon as your symptoms increase.
• Always consider first why you want to follow an alternative treatment.
• Prepare yourself by looking up and reading information about the alternative treatment. Consult with your attending doctor, because certain complaints may be reduced by some alternative treatment methods.
• Determine yourself in which alternative method you trust for the relief of your complaints and whether you want to start.
What can you do best when choosing an alternative treatment?
• Always consult your doctor about the alternative treatment method you want to follow.
• Consult with your attending doctor and with the alternative therapist if they want to discuss your treatment with each other.
• Choose an alternative therapist who has followed a recognized vocational training and is affiliated to a professional organization.
• Ask your alternative therapist in advance about the purpose, duration, costs and risks of the treatment. How much money you spend depends on which treatment you choose and how long it takes.
• Do not stop your regular medical treatment, as this may worsen your symptoms.
• Weigh during treatment whether you want to continue or stop if your symptoms get worse, if you do not notice any effect of the alternative treatment or if you get side-effects.
Why is your food important?
• Healthy nutrition is important to get the vitamins and minerals and other nutrients that your body needs.
• Obesity creates risks for your health and disease progression. In the case of arthritis and obesity, for example, obesity plays an important role in overburdening and osteoarthritis in the knees, hips and ankles. The pressure on your joints is then simply too great. Healthy eating and exercise (exercising a sport and active in the home and outdoors) can help to reduce or prevent excess weight.
• A healthy diet is always important and the dietitian can support you with the right dietary advice.
What is a healthy diet?
With a healthy diet your body gets the right amount of good nutrients, which it needs. You eat the quantities that your body needs. The dietitian can support you with the right nutritional advice.
The 5 courses to choose from are:
• Vegetables and fruit
• Bread, cereal products and potatoes
• Fish, legumes, meat, egg, nuts and dairy
• Lubrication and preparation fats
• Drinks
Where can you get advice for a healthy diet?
• You can request advice from your doctor or a dietitian. The doctor can refer you to a dietitian. Some diets may possibly help against your symptoms. Consult with your doctor or dietitian if you want to try a certain diet. And make sure that you do not omit important foods from your daily diet.
What can you do with a painful or dry mouth?
Sometimes you can suffer from a dry or painful mouth for various reasons, also due to your illness. Tips:
• by chewing (for example piece of cucumber, sugar-free candy or chewing gum) and sucking (ice cube) the salivary glands are stimulated to produce saliva.
• good oral care is important: good tooth brushing, flossing and the use of mouthwash.
• rinse your mouth regularly, drink small amounts of water and use a mouth sprayer if necessary.
• let hot drinks cool down first.
• use ice or cold dishes, because the cold numbs the pain.
• do not use sharp herbs and spices, fruit juice, carbonated soft drinks, alcoholic beverages, very salty foods and sour food.
• food with hard crusts, nuts, bones and bones can cause injuries.
• use soup, gravy or sauce with the hot meal to make the food smoother.
• spreadable cheese, spreadable paté or salad, jam or honey on bread, porridge, drinking breakfast and custard, for example, swallows easier than dry spreads.
• if you need to use ground or liquid food, you can use a mixer to grind your meal with some extra moisture.
In some forms of arthritis or use of certain drugs intestinal complaints can occur. The intestinal complaints can arise from the influence of certain drugs on food intake. Conversely, the food you eat can have an effect on the way your drugs work.
Dietary supplements, fish fatty acids, glucosamine and vitamin D?
• Dietary supplements are available as pills, powders, drops, capsules or drinks and are intended as a supplement to inadequate daily nutrition. They contain vitamins, minerals or bio-active substances. These synthetic or isolated vitamins, minerals or bio-active substances have the same effect as the vitamins and minerals that are already naturally in your food and drink.
Many people choose an additional supplement, in addition to their daily diet. The users of dietary supplements indicate that they experience positive effects of the use of certain herbs, vitamins and minerals. The body absorbs the nutrients in pills more easily than the nutrients in food. But if you eat healthy and varied, you do not need additional nutritional supplements, because you already get enough nutrients, minerals and vitamins. Always report to your doctor and pharmacist that you are using dietary supplements.
• Fish fatty acids appear to have a mild anti-inflammatory effect with a high intake. Research has been done especially in rheumatoid arthritis. The advice is to eat oily fish twice a week.
• Glucosamine can act as a mild painkiller for osteoarthritis in the knee, but does not stop arthritis.
• Our body naturally makes vitamin D under the influence of outdoor sunlight. Vitamin D may have a beneficial effect in inflammatory arthritis, but that has not yet been proven sufficiently. People with Lupus erythematosus get vitamin D prescribed as they are not often outside, because sun exposure can lead to lupus flares and skin problems. Vitamine D is given with calcium tablets to ensure a good intake in the body, when you have osteoporosis or osteoarthritis.
Therapy for fibromyalgia
Fibromyalgia cannot be cured, but you can learn to deal with the complaints as well as possible. In consultation with your doctor, you can choose one of the following therapies:
• Exercise therapy. You can improve your physical fitness yourself by walking, cycling or swimming. To keep your muscles in shape you can do muscle strengthening exercises. You can do stretching exercises against muscle cramps.
• Physiotherapy or exercise therapy (Cesar therapy and so on). This improves your posture and therefore makes it easier to move.
• Relaxation therapy. Think of a warm bath, a shower or massage to relax the muscles. In yoga or meditation you also relax mentally.
• Occupational therapy. An occupational therapist can teach you how to do your daily work so that it becomes easier to cope with.
Cognitive behavioral therapy
Some people with fibromyalgia need psychological help. Living with chronic pain and fatigue is a big challenge. You may not be able to do what you were used to. In addition, it sometimes takes a long time before the diagnosis is actually made. Fibromyalgia is therefore often not only physically, but also mentally a heavy burden. It can help to talk about it with, for example, a psychologist. If you wish to do so, please contact your doctor first, as he can refer you.
Living with fibromyalgia
Even with the many treatment options, patient self-care is vital to improving symptoms and daily function. Together with medical treatment, healthy lifestyle behaviors can reduce pain, increase sleep quality, lessen fatigue and help you cope better with fibromyalgia. Here are some self-care tips for living with fibromyalgia:
• Give information. Tell people in your immediate environment what fibromyalgia is. Then they can understand your illness and your symptoms and start taking them seriously.
• Acceptance. However difficult, try to accept that you have fibromyalgia. You cannot do everything you used to do because of this condition. Look forward, not backward. Focus on what you need to do to get better, not what caused your illness. You get more complaints from psychological tensions.
• Exercise. Make sure your condition remains as good as possible, because a bad condition means more complaints. More movement ensures that you feel better both physically and mentally. This is a very important part of the fibromyalgia treatment. While difficult at first, regular exercise often reduces pain symptoms and fatigue. Slowly add daily fitness into your routine. Add in some walking, swimming, water aerobics and/or stretching exercises and begin to do things that you stopped doing because of your pain and other symptoms. It takes time to create a comfortable routine. Just get moving, stay active and don’t give up.
• Warmth (shower, bath), massage and stretching exercises are good for relaxing stiff muscles.
• Set a regular sleeping pattern. Go to bed and wake up at the same time each day. Getting enough sleep lets your body repair itself, physically and mentally. Also, avoid daytime napping and limit caffeine intake, which can disrupt sleep. Nicotine is a stimulant, so stop smoking.
• Prevent as much stress as possible. Try to get to know your own limits as well as possible. Learn to listen to your body. Do certain actions differently, for example do not lift a heavy object, but slide it. Make time to relax each day. Deep-breathing exercises and meditation will help reduce the stress that can bring on symptoms.
• Learn how to deal with chronic pain. If you deal well with the pain, the pain will control your life less. There are also courses for this, ask your doctor which are suitable.
Patient Education Library I Fibromyalgia
https://www.ypo.education/rheumatology/fibromyalgia-t41/video/
Source videos
Patient Education Library I Fibromyalgia I https://www.ypo.education/rheumatology/fibromyalgia-t41/video/
The doctors I Fibromyalgia – A Complex, Misunderstood Condition I https://youtu.be/NCuGgh1ySzs
Accountability text Fibromyalgia
The information about fibromyalgia is general.
Every situation is different, so if you have any questions or complaints, always consult your doctor, medical specialist or pharmacist.
Patient videos
The patient videos are provided for general education only. Individuals should consult a qualified health care provider for professional medical advice, diagnosis and treatment of a medical or health condition.
The Caribbean Arthritis Foundation does not provide medical advice, diagnosis or treatment!
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