Ehlers Danlos and Fibromyalgia

The most prevalent diagnosis given to persons with CWP (Chronic widespread pain) is Fibromyalgia (FM). Ehlers-Danlos syndrome (EDS) (especially hypermobile Ehlers-Danlos syndrome (hEDS) and the related hypermobility spectrum disorders (HSD)) can present with a similar appearance. In addition, hEDS/HSD can cause CRP (Chronic regional pain) by causing recurrent acute or chronic damage to a few hypermobile joints.

FM and hEDS/HSD are both frequent ailments. As a result, it’s not odd that they might show up in the same person by chance. Several modest research and opinions, on the other hand, imply that they may be linked because they share similar processes that cause pain. Your doctor mustn’t dismiss hEDS/HSD merely because FM is present, whether by chance or by association. Aside from the fact that hEDS has other issues not apparent in FM that may go unnoticed, the physical therapies used to help FM may injure the hypermobile individual if they are not suited for them.

Fibromyalgia diagnosis

The American College of Rheumatology developed the definition of FM in the late 1980s. Previously, the symptoms were labelled as ‘fibrositis.’ Fibromyalgia is a term that refers to pain in the fibrous tissue (fibro) and muscles (myo) and pain (algia). FM is commonly described as a condition in which muscles become tense, sensitive, and tight due to a lack of relaxation. Inflammation (itis) isn’t a characteristic.

The following are the criteria used by the American College of Rheumatology to diagnose FM:

  • CWP — as previously stated, chronic and widespread pain.
  • At least 11 tender spots on a body map, out of a total of 18

However, it was recently hypothesized that FM might be diagnosed using a symptom checklist rather than a tender point examination. This suggestion has sparked debate, not least since the symptoms are similar to other disorders like hEDS/HSD. It should always be the case that anyone experiencing pain and exhaustion should be thoroughly checked rather than assumed to have FM.

The exact cause of FM is unknown. Although muscle soreness may be associated with a low vitamin D level, which should be rectified, there are no abnormal biopsy tests, scans, blood tests, or other investigations to support the diagnosis. FM is linked to headaches, exhaustion, poor sleep patterns, restlessness, bowel disturbances (e.g. irritable bowel syndrome), and autonomic heart rhythm and blood pressure changes, just like hEDS/HSD.

Fibromyalgia treatment

FM has no known cure. Given the variety of symptoms other than pain, it’s likely that no single treatment will suffice. The goal of treatment is to alleviate as many symptoms as feasible. Various treatments have been recorded with varying degrees of effectiveness; not all treatments are effective in all cases. People often appear with quite distinct situations and symptoms, necessitating an individual approach, similar to the ideas used to treat hEDS/HSD. In 2007, a group of specialists examined the research data supporting the efficacy of various treatments. Their findings were included in the ‘EULAR Evidence-Based Recommendations for the Management of Fibromyalgia Syndrome’ guideline.

Workout/Exercise

Walking, cycling and swimming are the greatest forms of aerobic exercise for alleviating symptoms. It is recommended that you build up gradually over several months, eventually exercising 4 to 5 times per week for at least 25 to 30 minutes at a time.

Physiotherapists can help you with exercise recommendations, adjustments, and evaluations. This should include suggestions for a healthy lifestyle, relaxation, and pacing.

When you’re hypermobile, your therapy evaluation may need to include the following:

  • Stabilizing exercises for the core
  • Joint stabilization exercises, which include lowering the risk of dislocations.
  • A proprioception-improvement programme (joint position sense)
  • Full hypermobile range of motion is encouraged while preventing unnecessary stress on joints, and long periods in potentially harmful positions are avoided.

Some people may benefit from 20-30 minutes of exercise in any heated pool (hydrotherapy), whether it’s a specialized therapy unit or a local heated swimming pool.

Cognitive behavioral therapy (CBT)

CBT is a type of psychotherapy (often known as “talking treatment”) used by clinical psychologists to help people manage their FM symptoms. CBT focuses on how a person’s present beliefs and behaviors are influencing them. It is a problem-solving, hands-on therapy targeted at controlling and alleviating pain, exhaustion, mood swings, and anxiety that interfere with daily life. Exercise, other clinical psychology, physiotherapy, and medication treatments all benefit from it.

Complementary therapies

Massage, aromatherapy, and acupuncture are all useful for certain people. There is the very limited research evidence on which to base recommendations for using these treatments; however, they may help with relaxing.

Prescription drugs

While clinical trials of the following painkillers have been conducted in FM, they have not been conducted in hEDS/HSD. Antidepressants (for both pain control (e.g. milnacipran and low-dose amitriptyline) and low mood (e.g. duloxetine, fluoxetine, sertraline, and venlafaxine)) and anticonvulsant medicines are the most widely used painkillers (e.g. pregabalin and gabapentin). In the treatment of FM, tramadol in conjunction with paracetamol looks to be as effective as antidepressants. Long-term usage of powerful opiates like morphine is dangerous due to the possibility of addiction and negative effects. Furthermore, opioids frequently do not function for anything other than immediate pain relief.

If the spasm is severe, a doctor may prescribe a muscle relaxant such as a benzodiazepine (e.g. temazepam or diazepam) for a short length of time, such as a week. These may also help to alleviate anxiety. Their usage as sedatives to assist rectify poor sleep patterns may be effective for a short time, but the long-term impact on FM is negative. As a result, sedatives are not suggested, and there is the same risk of addiction as opiate medications.

Fatigue

Fatigue is a prevalent and unbearable symptom in various musculoskeletal disorders, including FM, hEDS, and HSD. Other reasons for exhaustion should be ruled out, such as anaemia, endocrine problems such as hypothyroidism (underactive thyroid), chronic infections, and poor heart, lung, liver, or kidney function. However, weariness is simply a symptom of the pain condition in the great majority of instances of FM and hEDS/HSD.

It’s more than just the fatigue that comes with exercise or a long day. After even little exercise, there is often an overpowering lack of energy. Poor concentration in children and teenagers can lead to difficulties in school, especially if the condition continues unnoticed or unaddressed. Others may see your failure to handle weariness as lazy, antisocial, or even melancholy.

Many people experience cold intolerance, fear of blackouts, dizziness, poor concentration, and the inability to stand for lengthy periods of time without becoming exhausted. This could be attributed to heart and blood pressure autonomic dysfunction (see EDS UK’s article ‘Autonomic Dysfunction’).

Managing fatigue

There are very small data to back up the utility of the numerous types of fatigue treatments available. Analgesics and antidepressants used to treat pain may help reduce fatigue indirectly in FM and hEDS/HSD. Controlling autonomic abnormalities of the heart and blood pressure may also be beneficial. Behavioral treatment and lifestyle adjustments such as pacing, adjusting sleep patterns, and exercising may be beneficial.

While there is insufficient evidence to support the use of nutritional supplements, carnitine, coenzyme Q10, and 5-HTP are often recommended supplements in the therapy of chronic fatigue syndrome (and hence potentially of fatigue in FM and hEDS/HSD). These substances are thought to be useful for boosting the immune system, increasing energy, and improving cognitive function.

It’s crucial to realize that all of these supplements have the potential for unknown prescription interactions, typically little or no research on use during pregnancy and breastfeeding, and no precise dosage guidelines for FM or hEDS/HSD.

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