Ehlers-Danlos Syndrome | Treatment for Pain & Fatigue

Ehlers-Danlos Syndrome is an inherited connective tissue disorder.

Most individuals with EDS suffer with chronic pain and fatigue.

Banjo cannot (of course) do anything to address the underlying connective tissue disorder. But it can significantly reduce pain and fatigue for most individuals with EDS.

In fact Banjo has been effective for each of the few EDSers who've used it to date. It's also been effective for most of those who have both EDS and fibromyalgia, a common 'overlapping' condition.

Of course we can't guarantee Banjo will reduce your pain and fatigue, but we do guarantee a complete refund if you're not entirely satisfied.

EDS Notes

Banjo for Ehlers-Danlos Pain and Fatigue

I’m looking for a few people (US residents only – sorry,) who might like to assist with a little Banjo ‘market research’. Free product in exchange for your assistance – just provide feedback via surveys.

Banjo has proven effective at providing relief from pain and fatigue for some with Ehlers-Danlos syndrome. I would like to collect more data. Also, this is a slightly revised version of Banjo. I’m hoping that it works better and faster.

If you think you might be interested, I’ve set up a ‘group’ on Facebook to facilitate the project. Not quite sure yet how the groups work, but I think you’ll be able to read the document “Introduction” here: Banjo for EDS

Check it out if you’re interested – or you can send me a note here.

Can a person have both EDS and fibromyalgia?

Recently heard about a geneticist who, several years after having first diagnosed a patient with Ehlers-Danlos syndrome, was then asked by that patient about a more recent diagnosis of fibromyalgia.

“Oh, fibromyalgia is just a symptom of EDS,” the geneticist is said to have replied.

So the question is, in the case of a patient with EDS, is it possible to make the distinct diagnosis of fibromyalgia?

I think it’s possible to have discrete fibromyalgia along with Ehlers-Danlos for two reasons. First and most obviously, not everyone with EDS has symptoms consistent with fibromyalgia.

But it’s true that EDS will often cause some very ‘fibro-like’ symptoms, (perhaps as a result of the generally pro-inflammatory state that seems to result from the collagen defect… but that’s a much longer post.) I believe there is likely to be a real distinction because, based on my conversations with EDSers, while they often have diffuse pain, and while that pain is most often accompanied by (usually severe) fatigue, the EDS-type pain and fatigue are much less often associated with other symptoms that frequently accompany fibromyalgia, such as irritable bowel syndrome, extreme sensitivity to lights, sounds, etc., and ‘fibro-fog’. True, none of these associated symptoms is required according to the ACR 1990 diagnostic criteria. But I have yet to speak with a fibromyalgia patient who does not have at least a substantial number of these associated symptoms. Hence my reason for thinking that a person can in fact have both EDS and fibromyalgia as two distinct entities.

Severe fatigue afflicts 75% of those with Ehlers-Danlos Syndrome

Severe fatigue adds substantially to the burden of EDS

Fatigue, it seems, is a near constant companion of pain, which has led many to conclude that pain is the cause of fatigue.

It’s true of course that pain is ‘fatiguing’  – but it seems something else might be at work. Perhaps both pain and fatigue result from a form of mild, chronic inflammation.

It’s noteworthy that lupus patients, for example, often report that while pain abates during a remission, fatigue most often does not. Likewise, when those with EDS have used Banjo they generally report a substantial decrease in fatigue (increase in energy) well before they obtain a significant degree of pain relief. Both those observations, and many others, have led me to conclude that pain and fatigue spring from a common (or closely related) cause.

The extent of impairment associated with fatigue is often underestimated. It is interesting to note that of 3,000 individuals with fibromyalgia who were recently surveyed, nearly 30% ranked fatigue as the most disabling of many symptoms.

Clinicians (as well as drug companies) tend to focus on pain and neglect fatigue. Perhaps because, though pain is hard to quantify, fatigue is even more so. Also, there are fewer effective treatments for fatigue than there are for pain.

The primary value, I think, of the study briefly summarized below, is the (first?) recognition of the extent to which fatigue, indeed severe fatigue, afflicts those with EDS. If nothing else, those who suffer with extreme fatigue in EDS might take some comfort in knowing that their symptoms are typical, not unusual.

October, 2009

Fatigue Is a Frequent and Clinically Relevant Problem in Ehlers-Danlos Syndrome.

Summary of the Abstract

Ehlers-Danlos Syndrome is a heterogeneous group of inherited connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Fatigue and pain are associated features but have never been studied systematically. Our goal was to measure fatigue, its clinical relevance, and possible determinants.

A questionnaire 273 individuals with Ehlers-Danlos Syndrome about the severity of their fatigue, functional impairment, physical activity, psychological distress, sleep disturbances, concentration problems, social functioning,  pain, and disease-related factors.

More than three-quarters of EDS patients were found to suffer with severe fatigue. Patients with severe fatigue are more impaired and report higher levels of psychological distress. The 5 possible determinants involved in fatigue are sleep disturbances, concentration problems, social functioning, self-efficacy concerning fatigue, and pain severity.

This is the first study of fatigue and its possible determinants in EDS and shows that fatigue is a frequent and significant problem in those with EDS.

Chronic pain in Ehlers-Danlos syndrome

Ehlers-Danlos syndrome

Ehlers-Danlos syndrome is actually a group of inherited connective tissue disorders believed to be caused by a genetic defect in collagen metabolism. Collagen is a critical component of various tissues throughout the body. It comprises an essential part of joints, ligaments, blood vessels, internal organs, skin and the inter-cellular matrix.

Up to ten different types of Ehlers-Danlos have been reported, each in theory associated with a unique defect in collagen metabolism. However, in 1997 a new classification system was introduced which defined six basic types of Ehlers-Danlos syndrome. The three most common (but still rare types) are the hypermobility type (formerly type 3), classical type (formerly types 1 and 2) and the vascular type (formerly type 4.) Even within a particular type, individual variability can be extreme, with symptom manifestation ranging from mild to severe.

Most patients are diagnosed based on clinical criteria, though precise diagnosis can sometimes be confirmed by genetic testing. The fact that patients with Ehlers-Danlos often have quite different symptoms, that symptoms overlap between types, and that there is extreme variation in the severity of those symptoms, all make it difficult to determine with confidence the specific category for any one patient. This also contributes to the under-diagnosis of Ehlers-Danlos syndrome. It is likely that many more people have the condition than the diagnosis.

Chronic pain is common in Ehlers-Danlos syndrome.

According to the study abstract summarized below, chronic and often disabling pain beginning early in life and of diverse distribution is a noted feature across all types of Ehlers-Danlos syndrome. Significant differences are noted among the various types.

Approximately 95% of those participating in the study were women. The age of study participants ranged from 9 to 70 years of age with an average age of 34. Approximately 55% of those participating were diagnosed with hypermobility type (type 3), 25% were diagnosed as classical type, almost 15% as vascular type, and about 5% could not be characterized.

Approximately 95% of all subjects reported chronic pain – pain that had lasted at least six months. Only about 5% reported being free of chronic pain.

Subjects were asked about pain in 13 specific locations. The average number of painful locations among all subjects was 8.

Subjects were also asked to rate the level of pain at each location on a scale of  0 to 10, where o is no pain and 10 is the worst pain imaginable. Counting only those locations identified as painful, the average rating across all subjects and all areas was 5.3.

Subjects were asked if the pain intensity had become worse over the course of their lifetime, with 84% responding that it had.

Results are summarized below:

Pain locations, severity and progression in all types of Ehlers-Danlos syndrome

Avg. number of painful locations: 8.0; Avg. pain at each location: 5.3; Pain worsening over lifetime: 84%

Pain locations, severity and progression in classical type EDS (types 1 & 2)

Avg. number of painful locations: 7.8; Avg. pain at each location: 4.8; Pain worsening over lifetime: 82%

Pain locations, severity and progression in hypermobility type EDS (type 3)

Avg. number of painful locations: 8.9; Avg. pain at each location: 5.3; Pain worsening over lifetime:86%

Pain locations, severity and progression in vascular type EDS (type 4)

Avg. number of painful locations: 4.3; Avg. pain at each location: 5.7; Pain worsening over lifetime: 71%

Not surprisingly, those with vascular type EDS (type 4) reported the fewest average painful locations. But somewhat surprising is that those with vascular type EDS do in fact report a significant number of painful locations (4.3) and, perhaps even more surprising is that they reported the highest average pain per location at 5.7.

Also surprising was the relative consistency between the among the various types in regard to all parameters above.

Pain in Ehlers-Danlos syndrome often begins early in life, and causes substantial disability.

Approximately half of study participants reported that the pain in most painful locations first began in adulthood. That is to say, over half of currently painful locations were not painful in childhood.

However, nearly 90% reported that some chronic pain first began in childhood. Taken together, these findings suggest substantial worsening of pain after age 18, consistent with subject reports of worsening pain.

The locations in which pain was most likely to begin early were shoulders, knees, ankles, feet and toes.

The pain of EDS was reported as a cause of substantial disability by by almost 90% of those with pain. Areas most affected were sleep and physical activity (each reported as an area of significant disability by approximately 70%), school or work performance (approximately 65%). Sexual activity was the least frequently reported disability secondary to pain, but was still reported by 45% of study participants.

Unfortunately, the study below concludes: “Most patients with Ehlers-Danlos syndrome reported that pain relief was modest to none when using a variety of pharmacologic and physical interventions.” The good news is that most people  with EDS who have used Banjo (thus far) have obtained significant pain relief. Banjo also reduces the fatigue that is common among those with EDS.

The publication:

August, 1997

Chronic pain is a manifestation of the Ehlers-Danlos syndrome.

Summary of the Abstract

Ehlers-Danlos syndrome is a group of inherited disorders of connective tissue characterized by joint hypermobility, hyper-elastic skin, fragile tissue and delayed wound healing and which is often associated with severe, chronic pain and fatigue.

This study sought to better elaborate the onset of pain, its distribution and its management. Individuals with various types of Ehlers-Danlos syndrome were interviewed. Most reported reported chronic pain beginning early in life. The most frequent location of pain was in the shoulders, hands, and knees.

Most patients with Ehlers-Danlos syndrome reported that pain relief was modest to none when using a variety of pharmacologic and physical interventions.

Ehlers-danlos syndrome, diffuse pain and chronic fatigue

Ehlers-danlos syndrome (EDS) is an inherited disorder of connective tissue. More specifically, EDS involves a defect in collagen production.

It is reported that over 75% of those with EDS suffer with extreme, chronic fatigue. How does a defect in collagen production lead to chronic fatigue?

Those with EDS, especially the hypermobility type (type 3), also frequently suffer with chronic, diffuse pain. This pain does not seem to originate in the joints and therefore does not result from the frequent joint dislocations and subluxations common among those with EDS. In fact those with the classical type of EDS (types 1 & 2) frequently experience the same degree of joint subluxations and dislocations, but without the chronic, diffuse pain.

Why does the collagen defect specific to hypermobile EDS (type 3) result in such greater pain?