Is Fibromyalgia really Ehlers-Danlos Syndrome?
Right at the top, I’ll slip in the most recent article I’m aware of:
Is It Really Fibromyalgia? Recognizing Mast Cell Activation, Orthostatic Tachycardia, and Hypermobility
July 2018
Leslie N Russek, Clarkson University
CONCLUSION
“These patient scenarios demonstrate research that shows HSD [Hybermobility disorders] co-exists with FM or is misdiagnosed as FM and that MCAS presents with FM-type symptoms. Little research has been done to measure the co-morbidity of POTS with FM. Mast cell activation syndrome, POTS, and HSD often present as a triad and have many overlapping signs and symptoms.11 However, MCAS has a dominant inflammatory presentation, POTS has primarily autonomic signs and symptoms, and HSD leads to mechanical stresses on fragile tissues. While the additional diagnoses do not cure FM, patients are often reassured to understand factors underlying what can seem like random and unrelated symptoms. Patients with HSD are often relieved to learn that there is a reason for their hypersensitivity and frequent injuries.43 Patients with POTS are often relieved to have an explanation for anxiety attacks, syncope, and extreme intolerance to (upright) exercise and activity (personal observation). Patients with MCAS are often relieved to make sense of all of their various symptoms affecting multiple tissues and organs (personal observation).”
But that’s just the latest article, as I write this. Below is a list of the citations, up until April 2018, that I’m aware of that discuss whether fibromyalgia might actually be one more subspecies of Ehlers-Danlos Syndrome (EDS.)
This may be too much detail. Alas, there’s no good easy overview of the topic in one article, sorry to say. Also, some of these citations are only available as abstracts (for free at least.)
The first thing to note is that it’s estimated by one expert that 95% of people with EDS are never diagnosed. But they do get other diagnoses, often, and fibromyalgia is one of these. That expert is this guy:
https://www.ncbi.nlm.nih.gov/pubmed/27824552
About one or two percent of the population has EDS, so this doesn’t represent all fibromyalgia diagnoses, but there is the question of whether fibromyalgia is a milder version of EDS, or a version with narrower symptoms. Here’s a rather brief report of a talk by the same expert (Rheumatologist) re that possibility:
AMERICAN COLLEGE OF RHEUMATOLOGY (ACR) MEETING REPORT
EHLERS-DANLOS SYNDROME AND FIBROMYALGIA
https://www.fmcpaware.org/acr-meeting-report-ehlers-danlos-syndrome-and-fm.html
The summary quote from that meeting-report:
“The important relevant information we heard in Dr. Graham’s talk is that EDS might be yet another example of a lesser known medical illness being diagnosed as fibromyalgia. If you notice that you experience many of these symptoms, most importantly joint hypermobility, it might be a good idea to ask your doctor about the possibility of being tested for EDS. At the very least this suggestion might open the doors to more effective treatment for your many FM symptoms.” From the Ehlers-Danlos Foundation site http://www.ednf.org/
He isn’t the first or only one to raise the possibility, however. The earliest citation I’m aware of is:
Rev Med Liege. 2013 Jan;68(1):22–4.
Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?].
[Article in French]
Hermanns-Lê T1, Piérard GE, Angenot P.
1Service de Dermatopathologie, Unilab Liège, CHU de Liège, Belgique. Trinh.hermanns@chu.ulg.ac.be
Abstract
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.
PMID: 23444824
http://www.ncbi.nlm.nih.gov/pubmed/23444824
Full article translation, by Jan Groh
https://www.facebook.com/groups/152615741473177/permalink/873615739373170/
Also, Dr. Tennant has written on the topic (last revision 2014.)
Editor’s Memo: Fibromyalgia: Time To Be a Secondary Diagnosis?
By Forest Tennant, MD, DrPH
https://www.practicalpainmanagement.com/pain/editors-memo-fibromyalgia-time-be-secondary-diagnosis
also discussed here:
https://edsinfo.wordpress.com/2014/10/09/fibromyalgia-time-to-be-a-secondary-diagnosis/
Summary quote from the latter: “This article presents a novel theory: “The most common cause of fibromyalgia is probably positional cervical cord compression.” “
More concretely, perhaps, there’s no question of some comorbidity, according to a very recent study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209734/
For completeness, I’ll include the link to a recent video I haven’t viewed:
Video: Hypermobility, fibromyalgia and EDS
Dr Alan Hakim, Consultant Rheumatologist, The Hypermobility Unit, Hospital of St John and St Elizabeth, London
https://www.ehlers-danlos.org/information/video-hypermobility-fibromyalgia-and-eds/
An allergy condition is highly comorbid with EDS, called Mast Cell Activation Syndrome (MCAS)
Here’s a 2017 video about that:
https://www.youtube.com/watch?v=ph9ndmsql6c&feature=youtu.be
the transcript of which is here:
https://www.ehlers-danlos.com/pdf/2017-Mast-Cell-Disorders-S.pdf
Some experts believe that MCAS may create EDS by adversely affecting collagen.
Some introductions to EDS, if needed:
http://stillkicking.info/2016/05/06/12-things-id-tell-you-about-ehlers-danlos-syndrome/
https://ellenandstuartsmith.squarespace.com/eds/
https://slingsandarrowsofoutrageousfortune.wordpress.com/eds101/
Video:
If You Can’t Connect the Issues, Think Connective Tissues (Heidi Collins, MD)
https://www.youtube.com/watch?v=H0jaF6Rnuv4
Resources:
Big info page for EDS, mostly for beginners and diagnosis
http://spoonsandstripes.tumblr.com/post/118488743480/what-is-ehlers-danlos-syndrome-eds-and-could-i
Re EDS genetics:
Some cases of EDS are solved genetic diseases with identified alleles. But the vast majority are not so determined; although some very interesting genetic associations were uncovered last year; notably the plural alpha-tryptase trait. These contradict a tradition that held that all or nearly all EDS was simply autosomal dominant.
[Edit, addendum. Dr. Grahame’s earlier views can be found in this 2010 book, as someone has kindly pointed out:
Hypermobility, Fibromyalgia and Chronic Pain (Paperback)
by Alan J Hakim MB FRCP (Author), Rosemary J. Keer MSc MCSP MACP (Editor), Rodney Grahame CBE MD FRCP FACP (Editor)]
