Is the prevalence of joint hypermobility purely a coincidence in CFS and FM? by Celeste Cooper

Shared by ProHealth is Dr. Peter Lowe’s assessment of joint hypermobility in chronic fatigue syndrome.

Is The Physical Examination Normal in CFS? Part 2: Joint Hypermobility, here.

As you will see, I too made this connection in our book “Integrative Therapies for Fibromyalgia, ChronicFatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (rated in the top 100 books on Diseases & Physical Ailments on Amazon in 2013) if you read more about joint hypermobility and Ehler’s Danlos Syndrome on my website here. 

How coincidental could this be?

Another study suggests this phenomenon goes undiagnosed in irritable bowel syndrome, a common comorbid disorder to fibromyalgia, which often overlaps with CFS.

Fikree A, Grahame R, Aktar R, Farmer AD, Hakim AJ, Morris JK, Knowles CH, Aziz Q.. A Prospective Evaluation of Undiagnosed Joint Hypermobility Syndrome in Patients with Gastrointestinal Symptoms. Clin Gastroenterol Hepatol. [Jan 15 Epub ahead of print.]

“Many upper and lower GI symptoms increased with increasing severity of JHS phenotype. Upper GI symptoms were dependent on autonomic and chronic pain factors. JHS is common in GI clinics, with increased burden of upper GI and extraintestinal symptoms and poorer quality of life. Recognition of JHS will facilitate multidisciplinary management of GI and extra-GI manifestations.”

French investigators noted some stark realities in fibromyalgia patients.

“Some patients suffering from fibromyalgia present with clinical signs and alterations in the histopathology, immunohistochemistry and ultrastructure of the dermis similar to the Ehlers-Danlos syndrome, hypermobile type (EDSH). Some types of fibromyalgia possibly represent an undiagnosed EDSH.”

Hermanns-Lê T, Piérard GE, Angenot P. [Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?] Rev Med Liege. 2013 Jan;68(1):22-4.

I can only speak from what I found in my literature review for the 434 page book and my own personal experiences. A stark reality for me is that my own skin is that of someone on long term steroid therapy, but I don’t even tolerate steroids. My wounds heal so slowly that one of my doctors said I should always have a wound care specialist. My skin connective tissue tears like paper and bruises from a feather touch. I have had four shoulder surgeries, one complete reconstruction because it would not stay put, and the other three because of tendon and cuff tears. My hips still pop in and out at will, only contributing to fall risk and aggravation and development of more trigger points, piriformis and sacroiliac pain, and hip bursitis. I have suffered many severe joint sprains throughout my life. I can still put my hands flat on the floor and my therapists are amazed at my flexibility in light of my age and the severe myofascial pain syndrome. And yes, before arthritis, I was what many referred to as double-jointed.

Are our doctors giving this connection serious consideration? 

Could this explain why so many FM and CFS patients 

are susceptible to myofascial pain syndrome?

Keep up the good work Dr. Rowe and fellow astute investigators. A physician should never underestimate the value of a skilled physical exam. We salute you.

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."

Celeste Cooper, RN

Author, patient/ advocate, fibromyalgia health expert

Books:

Read about Celeste and access to her books at Author Central here

Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 

Advocacy: 

Fibromyalgia expert on Sharecare, here. 

Participant in the Pain Acition Alliance to Implement a National Strategy, here.

Website: http://www.TheseThree.com

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Out with the Old in with the New: Not so much. Diagnosing Fibromyalgia

There has been a great deal of criticism regarding the 2010 Preliminary Proposed Criteria for Fibromyalgia, here, and The Modification of the American College of Rheumatology, here. Besides my own concerns reported on in a blog titled A Comprehensive Review on the Proposed and Modified Diagnostics for Fibromyalgia, here, you might be interested in seeing what other clinicians an researchers have to say:

 

• Enhancing the Diagnosis and Assessment of Fibromyalgia by Lesley M. Arnold, MD, here.
• A report and opinion on the preliminary guidelines for the  clinical diagnostic criteria for fibromyalgia by Robert Bennett, MD, here.
• Drs Bennett & Clauw Debate Abandonment of Tender Point Test in Revised FM Diagnostic Criteria, here.
• The Scientific Basis for Understanding Pain in Fibromyalgia by Robert Bennett MD, FRCP, here. 

 

In July of 2012, the SSA ruled to include Fibromyalgia in the listing of impairments, here. As an RN, this expert  was thrilled that the SSA has the good sense to use the 1990 criteria and require a physical exam, something the authors of the new criteria say is not necessary. As always, functional impairment must be documented using tools such the Residual Functional Capacity Questionnaire by Dr. Robert Bennett. The new diagnostic criteria, proposed but in use by some, falls short of assessing patients for clinical trials and in helping them obtain disability benefits. You can read more about pain and disability here. 

 

Many study results are skewed because common comorbid conditions are not ruled out, the number one culprit is myofascial pain syndrome (MPS), which is known as the great imitator. Research suggests it is one of the main peripheral pain generators to the centralization (amplification) of pain in fibromyalgia. It is also prevalent in other overlapping conditions, such as bruxism, restless leg syndrome, migraine, bladder and bowel dysfunction, chronic fatigue syndrome, TMJ and piriformis syndrome. The presence of MPS can also explain some of the unexplained symptoms of swelling and neuropathy. This is exactly the type of comment I submitted to the FDA on the upcoming “Public Meeting on Fibromyalgia Patient-Focused Drug Development” on December 10, 2013, here. 

 

There is no doubt that fibromyalgia may play a role in neuro, endocrine, and immune function because of the upset in the command center of the brain and possibly a broken mechanism in the brain for interpreting pain messages, but to get clear untainted research, we need good diagnostic criteria, which will only come about when all these other things are considered and leaving out a physical exam is no way to go about it.

 

Is it any wonder we seem to be chasing the monkey around the barrel?

~ • ~ • ~ • ~ • ~ • ~

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com