Hypermobility, Ehlers Danlos, and Fibromyalgia

Understanding Fibromyalgia and Ehlers-Danlos Syndrome (EDS)

Living with chronic conditions like Fibromyalgia and Ehlers-Danlos Syndrome (EDS) can be challenging. These conditions often coexist, leading to a complex array of symptoms that can significantly impact daily life. Although it's not yet clear how these two conditions are linked, there is significant evidence that Fibromyalgia is a comorbidity of Ehlers Danlos Syndrome and vice versa. Many doctors who are experts in this field are actually questioning whether or not these two conditions are even two distinct conditions as many of the symptoms and treatments show significant similarity. In thise article, we will explore what these conditions are, how they overlap, and the strategies available to manage them.

What is Fibromyalgia?

Fibromyalgia is a chronic condition characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas. It is often accompanied by other symptoms such as sleep disturbances, memory issues, and mood changes. The exact cause of fibromyalgia is unknown, but it is believed to involve a combination of genetic, environmental, and psychological factors. It's a condition that can be frustrating due to its invisible nature and the variability of its symptoms.

What is Ehlers-Danlos Syndrome (EDS)?

Ehlers-Danlos Syndrome (EDS) and the hypermobile spectrum disorders are a group of heritable connective tissue disorders that affect the skin, joints, and blood vessel walls. People with EDS often have overly flexible joints that can dislocate easily, skin that is thin and stretches easily, and a tendency to bruise easily. There are several types of EDS, with the hypermobile type (hEDS) being the most common. Diagnosis is based on clinical criteria, as well as genetic testing for some types.

The Connection Between Fibromyalgia and EDS

Fibromyalgia and EDS often occur together, especially hypermobile EDS, with many individuals diagnosed with one condition also meeting the criteria for the other. The connection between these conditions is not entirely understood, but it is clear that the symptoms of EDS can overlap with those of fibromyalgia. For example, chronic pain and fatigue are common in both conditions.

In EDS, joint instability and frequent dislocations can lead to chronic pain, which may be diagnosed as fibromyalgia if the underlying connective tissue disorder is not recognized. Additionally, the widespread pain and tender points associated with fibromyalgia can be exacerbated by the joint and muscle issues seen in EDS.

Symptoms and Their Impact

Pain: Chronic pain is a hallmark of both fibromyalgia and EDS. In fibromyalgia, this pain is widespread and often described as a constant dull ache. In EDS, pain often stems from joint dislocations, muscle fatigue, and early-onset arthritis.

Fatigue: Both conditions are associated with severe fatigue that can interfere with daily activities. This fatigue is often not relieved by rest and can be exacerbated by physical activity.

Joint Issues: EDS patients experience hypermobility, frequent joint dislocations, and early-onset arthritis, leading to significant joint pain and instability. This can make activities of daily living difficult and increase the risk of injury.

Cognitive Difficulties: Often referred to as "fibro fog," cognitive difficulties such as problems with concentration and memory are common in fibromyalgia. These issues can also occur in EDS, particularly when pain and fatigue are severe.

Gastrointestinal Problems: Many individuals with EDS experience gastrointestinal issues, including irritable bowel syndrome (IBS), which is also common in fibromyalgia patients. These issues can cause significant discomfort and impact nutrition and overall health.

Management Strategies

Managing fibromyalgia and EDS requires a multidisciplinary approach. Here are some strategies that can help:

Pain Management: Medications such as pain relievers, anti-inflammatory drugs, and muscle relaxants can be prescribed. Physical therapy is crucial for both conditions to strengthen muscles and stabilize joints.

Exercise: Low-impact exercises such as swimming, walking, and yoga can improve overall fitness and reduce symptoms. It's important to tailor exercise programs to individual capabilities to avoid overexertion.

Sleep Hygiene: Improving sleep quality is essential. Strategies include maintaining a regular sleep schedule, creating a restful sleep environment, and avoiding stimulants like caffeine before bedtime.

Nutrition: A balanced diet rich in anti-inflammatory foods can help manage symptoms. Some individuals may benefit from working with a nutritionist to address specific dietary needs.

Psychological Support: Cognitive-behavioral therapy (CBT) and other forms of counseling can help manage the emotional and psychological impact of chronic pain and fatigue, but it's important to remember that these conditions are real, phsyical illnesses that should not be dismissed as mental health conditions or hysteria.

Patient Education: Understanding the conditions and learning self-management strategies can empower patients. Support groups and educational resources can provide valuable information and emotional support.

Frequently Asked Questions

Can EDS be misdiagnosed as fibromyalgia?

Yes, EDS can sometimes be misdiagnosed as fibromyalgia because both conditions share symptoms like chronic pain, orthostatic intolerance, and fatigue. Proper diagnosis requires a thorough clinical evaluation to identify the specific characteristics of each condition.

Is there a link between hypermobility and fibromyalgia?

Yes, there is a link between hypermobility and fibromyalgia. Studies have shown that individuals with hypermobility, including those with EDS, are more likely to develop fibromyalgia. This connection may be due to shared underlying mechanisms affecting connective tissues and pain processing.

What is EDS often misdiagnosed as?

EDS is often misdiagnosed as fibromyalgia, chronic fatigue syndrome, or other musculoskeletal disorders due to overlapping symptoms like pain, fatigue, and joint issues.

What is often confused with fibromyalgia?

Fibromyalgia is often confused with conditions such as rheumatoid arthritis, lupus, and EDS because of similar symptoms like chronic pain, fatigue, and cognitive difficulties.

Is EDS more painful than fibromyalgia?

Pain levels in EDS and fibromyalgia can vary greatly among individuals. Some may find EDS more painful due to joint dislocations and instability, while others may find the widespread pain of fibromyalgia more debilitating.

Are people with fibromyalgia or EDS more likely to be neurodivergent?

There is evidence suggesting that a subset of people with fibromyalgia or EDS may be neurodivergent, showing higher rates of conditions like ADHD and autism. However, not all individuals with these conditions are neurodivergent.

What is the connection between EDS and fibromyalgia?

In short, science doesn't have all the answers, but clinical observations suggest a strong link between the two. The connection between EDS and fibromyalgia lies in the overlapping symptoms, such as chronic pain and fatigue, and the higher prevalence of fibromyalgia among individuals with hypermobility, including those with EDS. Both conditions may also share underlying genetic factors and other mechanisms affecting connective tissues and pain perception.

Conclusion

Fibromyalgia and EDS are complex conditions that require a comprehensive, individualized approach to management. By addressing the various symptoms and working with a healthcare team, individuals can improve their quality of life and maintain their daily activities. If you suspect you have symptoms of either condition, consult with a healthcare professional for a thorough evaluation and personalized treatment plan.

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References:

Fairweather, D., Bruno, K. A., Darakjian, A. A., Bruce, B. K., Gehin, J. M., Kotha, A., Jain, A., Peng, Z., Hodge, D. O., Rozen, T. D., Munipalli, B., Rivera, F. A., Malavet, P. A., & Knight, D. R. T. (2023). High overlap in patients diagnosed with hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorders with fibromyalgia and 40 self-reported symptoms and comorbidities. Frontiers in Medicine, 10, 1096180. https://doi.org/10.3389/fmed.2023.1096180

Fitzcharles, M. A., Ste-Marie, P. A., Goldenberg, D. L., Pereira, J. X., Abbey, S., Choinière, M., Ko, G., Moulin, D. E., Panopalis, P., Proulx, J., Shir, Y., & Canadian Pain Society and the Canadian Rheumatology Association. (2012). 2012 Canadian Guidelines for the Diagnosis and Management of Fibromyalgia Syndrome. Pain Research and Management, 18(3), 119-126. https://doi.org/10.1155/2013/191021

Stone, B., & Palmer, S. (2023). The links between fibromyalgia, hypermobility, and neurodivergence. Touch Immunology. Retrieved from https://www.touchimmunology.com/fibromyalgia/journal-articles/the-links-between-fibromyalgia-hypermobility-and-neurodivergence/

Sciortino, D., & Sanders, A. (2022). Understanding the Interplay Between Fibromyalgia and Ehlers-Danlos Syndrome. ScienceDirect. https://www.sciencedirect.com/science/article/abs/pii/S0049017222001780

Hakim, A., & Grahame, R. (n.d.). Fibromyalgia and Chronic Fatigue. Ehlers-Danlos Society. Retrieved from https://www.ehlers-danlos.org/information/fibromyalgia-and-chronic-fatigue/

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