Management of chronic pain in EDS – part 3

Management of chronic pain in EDS – Part 3 – Nov  2018

This post continues from the first part & second part, and delves into the varied options for management of pain.

3.2 Management

Most cases of chronic pain in EDS are a mix of nociceptive and NP. [Neuropathic Pain]

As symptoms vary based on the diseases phase and in individuals of EDS, broad recommendations in a patient with EDS or JHS include:  

  • prevention of joint and muscle injury;
  • treatment of acute pain; preventing persistent or chronic pain;
  • treating chronic pain; and
  • optimization of overall health and improvement in fatigue.

Specific to chronic pain, one can consider the management from following perspectives:

  • pain medications,
  • psychotherapy,
  • physical therapy,
  • pain interventions and surgery,
  • education and life style changes, and
  • management of comorbidities

3.2.1 Medications

Recommendations based on the efficacy of pain medications for use in the treatment of EDS patients are limited by the lack of evidence.

I guess they’ll just have to listen– and believe–what their patients tell them.

…the use of NSAIDS is limited due to poor tolerance secondary to comorbid gastrointestinal issues in EDS patients.

Opioids may be an option, but only for a short duration. There is good evidence that long-term treatment with opiates is not a viable option and may lead to central pain sensitization.

This is mostly nonsense and doesn’t apply to me or any other EDS patients I’m in contact with.

Opioids are very effective for the nociception-triggered pain we suffer from the ongoing small and large damage to our tissues, whether those be joints, muscles, or organs – anything that holds a body together is fragile.

Because the pain often appears in different places, I don’t think most of us develop what medical professionals think of as “chronic pain”, which is constant, day and night. I’ve had an incredible variety of pains, unpredictable and varying in intensity. As soon as I learn to avoid one, another one springs up elsewhere.

This is very different from the usual “chronic pain” because it’s really an unending series of acute pains. (see My EDS pain is chronic acute pain.)

Steroids have been found to be helpful in acute exacerbation of joint pains. However, care must be taken to avoid long-term use to prevent steroid-related side effects.

I asked my doctor to prescribe me several 5mg prednisone tablets that I can use when my joint or muscle pain is resistant to even opioid pain relievers. I’m careful to use it only for a day or two, and only have to resort to this nasty medication a few times a year.

Usual options such as tricyclic antidepressants, anticonvulsants, serotonin and norepinephrine reuptake inhibitors, and other antidepressants may be used with caution given increased risk of dysautonomia in EDS.

Muscle relaxants such as baclofen can be helpful for painful muscle spasms, but are discouraged for routine use due to theoretical risk of increasing joint instability and consequently worsening pain

Overall expert consensus indicates that pharmacological treatments are often not effective in the long-term treatment.

So they expect us to simply tolerate pain that continually worsens over a lifetime?

3.2.2 Physical therapy

Within the multidisciplinary team, physical therapy plays a central role in management of individuals with EDS.

However, many physical therapists are not familiarwith the diagnostic criteria, prevalence, common clinical presentation, and management of EDS.

The main objective of rehabilitation is to reduce disability and to improve quality of life. As per the international consortium the current evidence-basis for physical therapy assessment and management of EDS is limited and of poor quality. 

As a general recommendation, therapists should be guided by clinical reasoning and assessment and treatment should be tailored to the individual patient’s needs.

Techniques that have been used in treating EDS pain include

  • manual therapy for overactive muscles,
  • trunk stabilization,
  • posture re-education,
  • joint awareness using biofeedback, and
  • joint mobilization with muscle release.

 As a rule, stretching exercises should be limited to gentle stretching to avoid any risks of subluxations or dislocations.

3.2.3 Psychotherapy

The psychiatric and psychosocial issues have to be explored and properly evaluated in these patients.

  • Pain,
  • negative feelings, and
  • poor emotion regulation

are frequently associated with this condition.

The international consortium recommends utilizing cognitive behavioral therapy (CBT) in EDS patients.

To date, there have been no clinical trials to demonstrate its efficacy in EDS.

That’s because it’s a biological problem and causes pain through biological and mechanical processes.

However, the CBT approach is applicable to all patients especially those whose pain is

  • intractable,
  • life dominating, and
  • unresponsive to analgesics or other physical interventions.

In the setting of EDS, CBT can help patients in learning how to live with their untreatable disorder.

It seems that’s about the best we can expect: “learn to live with EDS”. It does not mean that we should have to live with treatable pain or any other treatable symptoms, regardless of the current fads for “woo-woo” pain therapies.

3.2.4 Education and lifestyle changes

Despite the lack of major studies physical therapy and lifestyle modifications are considered one of the most successful strategies for managing pain in EDS. There is lack of understanding about the disease and its progression among many families.

Education should also include information on

  • strategies to prevent joint injury,
  • improved work ergonomics,
  • improving muscle tone and function without overuse,
  • avoid smoking, and
  • weight control and
  • sleep hygiene

3.2.5 Pain interventions and surgery

Pain interventions frequently involve nerve blocks and neuromodulatory procedures such as radiofrequency interventions.

EDS patients are traditionally recognized to have resistance to local anesthetic agents

3.2.6 Management of comorbidities

EDS patients are known to suffer from comorbidities involving

  • gastrointestinal,
  • genitourinary,
  • neurological,
  • cardiovascular, and
  • psychological comorbidities

that can secondarily affect theirchronic pain issues or symptoms.

Multidisciplinary care involving a team approach allows for better identification of these issues and appropriate physician referral and management.

4. Conclusion

Chronic pain in patients with EDS is complex with poorly understood underlying pathophysiology.

Pharmacological management is limited by lack of evidence and current treatments are supported by extrapolation of data from studies in non-EDS patients.

Although physical and psychological therapies are considered effective, therapeutic standards are missing.

Proper training for healthcare professionals to deliver these therapies is still lacking.

Early diagnosis and education are important to improve quality of life and limit the progression of EDS.

Healthcare professionals working predominantly in pain medicine have the important responsibility of identifying and referring patients with suspicion for EDS to an appropriate neuromuscular clinic.

The variety and complexity of symptoms in EDS requires emphasis on the multidisciplinary approach which requires added resources. Our understanding and management of the often severe, evolving, debilitating pain in patients with EDS is currently insufficient and requires further research

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