Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

July 17, 2015

Chronic Pain in JHS

Ah, me! the Prison House of Pain!—what lessons
there are bought!—
Lessons of a sublimer strain
Than any elsewhere taught.

- Florence Earle Coates, Poems, Volume Two, The House of Pain

Chronic pain is a pain that lasts beyond three months and is an important feature of hypermobility syndrome contributing to the distress and disability caused by this disease. Prolonged pain adversely affects the person's body, mind and social life.

Chronic pain does not sound like much and yet is probably the most complex aspect of JHS and many other connective tissue disorders. It is as devastating to the quality of life of a person as it is difficult to treat.

The healers fail to heal

The person with undiagnosed or ill-managed JHS feels let down by the healthcare system and doctors. The only relief they are offered is painkillers which at the most only decrease the pain only fractionally. If the diagnosis of JHS is not considered, often it appears that there is absolutely no biological reason why the person should have so many myriad complaints - leading to the assumption, whether explicitly expressed or not, that the person really does not have these complaints.

Disruption of life

As the pain leads to further decrease in fitness, it makes difficult for the person to successfully or efficiently work - household chores, job and other responsibilities become challenging. The fatigue and sleep deprivation add to the pre-existing difficulties.

Further disruption of health

Chronic pain leads to a vicious cycle where a person avoids activity and movement due to fear of more pain and the inactivity in turn leads to more pain.

Neuro/Psychological Effects

There is a sense of isolation and loneliness because no one understands what you are going through. Relationships in life suffer. It is a common fact and also a medically accepted fact now that understanding support, availability of compassionate care and the opportunity to share one's feelings or problems with others combine to form a massive sustaining/healing/pro-health force. There is complete lack of these for the average JHS patient, because most people really don't believe they are sick, most people are unable to understand how and why they are sick, and most people find themselves unable to offer them the help they need.

The person with JHS may battle frustration and depressive moods. They may harbor several fears and anxieties. They may feel guilty for being unable to fulfil their roles. There is a sense of worthlessness, hopelessness and helplessness. There is sometimes chronic sleep deprivation and decrease of cognitive abilities. They may feel unable to bear it anymore during periods of heightened pain.

The psychological aspects and the actual perception of pain are intricately linked. Increased stress and depression actually lead to tense muscles, more pain and more severe distress as a result of the pain.  

The continued severe pain also has actual modifying effect on the brain neuronal pathways and leads the person to perceive any pain many times more severely than a normal person [1]. This does not mean it is a psychological or fake pain - the pain is really that severe for that person, although the trigger may not be severe enough to cause that much pain. Sometimes, I used to recognize this - "No way is this little bump supposed to pain like this - what is wrong with me?" or "What is this pain, it seems like I hurt myself - but I cannot remember when!"

Strategies for chronic pain management

In developed countries pain management has advanced to becoming a separate specialty. There are a number of separate and allied professional fields devoted to pain management. However, in India where pain is not effectively managed even for a dying cancer patient, perhaps it is too much to ask for a comprehensive pain management protocol for rheumatological diseases.

The strategies for pain management not only involve physical therapy or pharmacotherapy to actually manage the manifestations of the disease, they also involve many psychological based strategies that modify the way one finds the strength to bear the pain; they way one reacts and responds to the pain; and the way one learns to quieten the mind enough and relax the body enough to let the body and mind get some healing time.

I think there are two components to the pain I feel - a chronic physical pain and a chronic mental pain. There might be a variety of psychological terms for what I am labeling as mental pain, but in practical terms, in order to seek DIY holistic strategies, I found that these psychological terms, broadly speaking, constitute my mental pain.

In future posts, I will write on strategies that I have come across in relation to pain management. These not only involve cognitive behavior therapy but also many other books and methods that may be helpful to manage JHS pain, both physical and mental.

[1] Moseley, G. Lorimer, and Herta Flor. "Targeting cortical representations in the treatment of chronic pain a review." Neurorehabilitation and neural repair 26.6 (2012): 646-652.