Debilitating Symptoms of EDS

Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers–Danlos syndrome hypermobility type: Disability and Rehabilitation: Vol 32, No 16 – Feb 2010

This study can be used to show someone how disabling EDS can be:

Purpose. To investigate the

  • musculoskeletal complaints,
  • physical activity (PA) and
  • health-related quality of life (HRQoL)

in patients with the Ehlers–Danlos syndrome hypermobility type (EDS-HT).

Methods. Thirty-two female EDS-HT patients as defined by the Villefranche criteria and 32 gender- and age-matched healthy control subjects participated in the study.   

Data about musculoskeletal complaints were collected from a specific form developed for the study. Daily PA and HRQoL were evaluated by the Baecke questionnaire and the RAND 36-Item Health Survey (distributed by RAND), respectively.

Results.

A significant presence of

  • joint pain,
  • joint dislocations,
  • muscle cramps,
  • tendinitis,
  • fatigue and
  • headache

were revealed in the EDS-HT patient group.

Joint pain was reported as the most frequent and most severe symptom.

The habitual PA level was diminished in the patient group. Specifically, EDS-HT subjects had significantly lower sport participation, but a comparable leisure time excluding sports compared to the healthy control subjects.

All eight HRQoL (health-related quality of life) dimensions of the RAND-36 and both physical and emotional summary scores were significantly impaired in EDS-HT.

Conclusions.

EDS-HT is characterised by various severe musculoskeletal complaints and has a detrimental effect on the habitual level of PA and HRQoL, in both physical and psychosocial dimension.

An appropriate treatment and management in healthcare is needed.

Discussion

The results confirmed that subjects with EDS-HT typically demonstrate severe joint hypermobility with recurrent joint dislocations and joint pain, as stated in the criteria of Villefranche.

Furthermore and of importance, the present study also revealed a considerable and significant presence of muscle cramps, tendinitis, headache and fatigue in EDS-HT patients.

Nearly all patients in the present study had joint dislocations and all patients reported joint pain, which was also perceived as the most frequent and most severe complaint.

The median pain intensity score was 4/10 (range 1–8).

These data underscore that moderate to severe pain is an everyday occurrence in EDS-HT patients.

the most frequently reported dislocations occurred in the shoulder, hip and knee joint. However, a significant number of patients in the present study reported also ankle/foot and finger dislocations.

These results point out that hypermobility and dislocations in patients with EDS-HT occur frequently in both large and small joints.

 A considerable and significant presence of muscle cramps and tendinitis in the EDS-HT group was revealed. I

 

Futhermore, a significant association was found between the EDS-HT group and the presence of headache and fatigue.

also the impact on Pysical Activity in patients with EDS-HT was evaluated. The current study showed that the habitual Pysical Activity was diminished in the patient group compared to the control group. Specifically, the EDS-HT subjects had a significantly lower sport participation during leisure time than the age-matched control subjects 

Sport activities can be strongly restricted by joint instability and recurrent joint dislocations in EDS-HT patients, as extreme joint positions are often adopted in sports. The fear of being physically injured and having increased pain could be another reason for avoiding potential risk activities

The results of the current study demonstrated significantly lower scores in the EDS-HT group compared to the control group on all eight domains of HRQoL as well on the PCS and MCS, as reported by the RAND-36. The HRQoL scores of the control group are in line with the Dutch reference population 

This pattern reflects the strikingly worse HRQoL (health-related quality of life) of life of patients with the HT of EDS.

The individuals’ complaints related to EDS-HT in the current study showed to have a considerable impact on their physical, social as well as emotional daily life.

Furthermore, the EDS-HT patients also showed significantly lower scores than the control group regarding health change, indicating a greater change in health compared to a year ago.

The authors demonstrated that both physical and psychosocial health was strongly afflicted by the syndrome

However, only 30% of the total number of EDS patients represented with the HT.

Unfortunately, due to different methodological approaches, it is not deducible whether the impact of the disorder on physical and emotional HRQoL is stronger or weaker in patients with the HT compared to the total EDS group in the study of Berglund et al.

Nevertheless, the strikingly bad HRQoL in EDS-HT is obvious in the current study.

limitations of the study.

First, the study population was rather small

Secondly, it seems reasonable that the problems with the musculoskeletal system including pain, joint dislocations, muscle cramps, tendinitis, headache and fatigue, all have a considerable impact on the reduced PA and HRQoL in patients affected with EDS-HT

The results of the current study emphasise the importance of appropriate treatment and management of the musculoskeletal related complaints to restrict disability of EDS-HT patients.

Ironically, many of us need opioid medication just to do the exercises that will eventually improve our condition and possibly lessen the pain.

Effective treatment could involve the use of many skills, including

  • chronic pain management,
  • global muscle strength and endurance training,
  • core stability training,
  • proprioceptive enhancement,
  • joint stabilisation training and
  • joint awareness.

In conclusion, the results of this study illustrate that in addition to chronic pain and recurrent dislocations, muscle cramps, tendinitis, headache and fatigue are important complaints in patients with EDS-HT.

Further, the study demonstrates significantly diminished habitual PA levels in the patient group and highlights the important impact of the disorder on the patients’ physical and psychosocial daily life.

Whether increasing levels of PA improves HRQoL and decreases the complaints the EDS-HT patients suffering from, needs to be confirmed in future studies.

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