Is It Fibromyalgia or Ehlers Danlos Hypermobility Syndrome

Sorry if this has been posted before. I didn't see it.

While this: http://boards.medscape.com/forums?14@@.2a304a60!comment=1&show=results

is the direct link, I'm pretty sure you have to be a member of Medscape to read it. Since it's a free registration I'm going to quote the relevant part here:

"Human Genome and Clinical Diagnosis: The Yin and the Yang

Is It Fibromyalgia or Ehlers Danlos Hypermobility Syndrome?

Bruce Buehler, MD, Pediatrics, General, 11:21AM Mar 19, 2012

Fibromyalgia remains an enigma for diagnosis and testing. No specific cause or gene has been isolated. Often it is the diagnosis of exclusion after an extensive medical workup. Recently, patients with Ehlers Danlos syndrome type 1 have been shown to have many of the physical complaints associated with fibromyalgia.

Ehlers Danlos type 1 has a specific gene test. The main clinical features are excessively soft, elastic skin that heals poorly after injury. There is looseness of all the joints with dislocation of the knees, elbows, and shoulders being common. The underlying cause is abnormal collagen causing loose ligaments and poor skin integrity.

Type 3 Ehlers Danlos, also known as hypermobilty type, has the same symptoms but there is no genetic test available yet. The clinical findings to determine type 3 include, ciigarette paper scars that are translucent, and a history of joint dislocation after minor lifting. Patients have weak ankles and often experience sprains just walking. Patients can easily push their thumbs back to touch their wrists and younger patients can place there feet behind their heads. Finally, patients can place their hands flat on the floor when bending from the waist. Many patients have mitral valve prolapse.

Patients with Ehlers Danlos hypermobility syndrome experience joint pain, especially after standing or lifting. They have a feeling of pain in their skin, which has not yet been explained. Due to joint mobility, they develop artritis in their late 20s. Many of these symptoms mimic fibromyalagia, but treatment is quite different. Specific medications are used for fibromyalagia, whereas for Ehlers Danlos the treatment is intensive physical therapy and analgesics. Physical therapy is focused on strengthening the muscles above the joints while not stretching the ligaments. Skin lacerations should include subcutaneous sutures, trying to avoid suturing the skin alone."

He closed with a link to the EDNF. I know a lot of doctors, especially young ones, utilize Medscape and find it helpful. (Usally for drug info, but I hope for the other content as well.) There was a poll that asked: Do you test for EDS in patients who present with symptoms of Fibromyalgia? Of 37 docs, 25 said no, 8 said yes and 4 said 'other.'

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19 replies. Join the discussion

This is so encouraging to me. I was misdiagnosed with Fibro for 15 years, my grandma even longer. One of the reasons I started the "What were your misdiagnosis?" discussion was to see if this was common. Definitely keeps popping up! Thanks for sharing!

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I have been told I have both as well. Although I have EDS IV not Type1 or Type3.

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I know there is theory out there that Fibromyalgia can be a pain response in the body that can come secondary to other conditions that create a long term pain response in the body. Many with Lupus, Arthritis, and more develop Fibromyalgia. I have all the trigger points and symptoms of Fibromylia, as did my grandmother. I will say, since being more proactive about my pain and finding a PT who is helping my treat my subluxing, my Fibro symptoms have been reduced at least 75%. I've been calling it "decongesting my pain". Still, if I get overly exhausted or sick, or pain scale goes out of control, the Fibro symptoms come right back. Such a drag!

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It's a step in the right direction, but I wish the info had been more complete and accurate. The "specific gene test" only identifies 50% of those with Classical EDS. I've never heard about the "painful skin" problem. Type III does not have "cigarette paper" scars, that's Classical. Placing your feet behind your head is NOT on the Beighton scale. Where did this guy get his information????

Fibromyalgiacs also receive intensive pt--not really sure that the treatment is that different. But, most of all, what I long to see recognized is that EDS is a MULTISYSTEMIC problem, not a problem in the joints alone.

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Thank you EllyMae...I was wondering the same thing. Who wrote this and where did they get their information? Misleading and inaccurate information....just what all of us EDS'ers need ;) And for it to come from an apparently reputable source is a little shocking.

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Fibromyaligia was also one of my misdiagnoses, I however wasn't convinced it covered all of my symptoms.

I think my chronic pain in regards to trigger points comes from unstable joints. I have EDS hypermobility type, there's a lot of muscle spasms I get. Normally trigger points and spasms that I get are due to injury or just plain old 'over doing it', my muscles have to work extra hard to hold my body together is how I figure it. I may have fibromyaligia like symptoms, but I have never been satisfied with that diagnosis because it didn't explain my hypermobile joints or the dislocations I have.

As for painful skin I can say YES, I do have that. Some of it is due to pain, when I'm in high pain it does hurt to have someone even touch me. So my left shoulder is a major cause of my pain. Some days I can't bear to have left hand touched, or my neck and back. Sometimes, if it's a really bad day, the pain is so awful I can't bear to be touched anywhere.

However, saying this, I am positive my fragile skin can get micro tears in it. I get odd, sharp pains in my hands which feel as if there should be a cut there but there isn't. I connected this to pain I found out when my well meaning husband offered to give me a foot rub one evening.

When he was massaging me I was like OWIE! What are you doing??? That REALLY hurts! He was gently pulling apart his hands on the skin of my feet, the pulling caused sharp, almost 'cut' like pain.

I've found that on my feet and hands especially that even gently massaging and spreading my skin causes pain like my skin is being ripped apart. And I think it is, just on such a microscopic level that the tears aren't visible to the naked eye and aren't severe enough to bleed, normally.

My lovely, velvety soft sensitive skin is very fragile. Adhesives from band aids have been known to pull off the top layers of my epidermis leaving behind something very similar to a rug burn.

It makes sense, at least to me, that my skin is fragile enough to get ripped as well. I've never been tempted to pull apart my skin with enough force to cause bleeding, but I'm sure that's what is happening when my skin gets stretched apart.

My skin has a varying amount of sensitivity depending on where the skin is and what kind of skin it is. Mucous skin seems to be the easiest to rip, but is al's the fastest to heal. The skin on my hands and feet seem to be particularly fragile, as is skin which rubs together a lot, like between my thighs and arms.

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I was diagnosed with fibro as well, but I wasn't comfortable with that diagnosis, so I kept searching, and a few month later, I got the EDS 3 diagnosis. I have painful skin. Sometimes when my boyfriend touches my arm, it burns, or it's even like an electric shock.Apparently it's quite common among EDSers..When I was on vacation last summer, it was torture to apply sun cream...

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Cigarette paper scars are more indicative of Classical--see Howard Levy's write-up--but EDSers often have elements of more than one type--it's rare for us to be "purely" one type or another.

As far as the painful skin--I'm not saying that people don't have it, just that it's not included in the official dx criteria, nor has it been scientifically studied as being a part of EDS, at least as far as I have heard, and I make a real effort to keep up on the research.

Again, this doc never mentions the Beighton score, which is the initial screen for EDS.

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His EDS criteria does seem a bit sketchy, glad he's referring back to the EDNF! I think what I feel hopeful about is the discussion regarding screening Fibro patients for EDS. IMHO, this need to be a common practice. Not only because of the overlap and the number of us who have carried this as a misdiagnosis, but also because pain in FMS is considered an over reaction in the pain response to that which is not actually harmful vs EDS pain signaling a sublux or other issue. I beat up my body willing myself through "phantom pain", and now I am dealing with the unintended abuse I did to my body. It's an awful reality!

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You know, Smilemommy, I once did a full set of sit-ups on my keys, which I had accidentally dropped on the mat underneath me. I had been so convinced that I had "phantom pain," that I dismissed the sharp pain of keys digging into my back each time I returned to the mat. Normal people would know in an instant that their pain was real. (It's been a long time since I could do a sit up:)!

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Oh my! You know exactly what I am talking about! When my son was born I kept saying I could feel everything (thankfully quick 2.5 hour labor and delivery), everyone chided me and said, "No way.". After my doctor had finished her last stitch fixing all my tearing (after a couple of reminders to relax and stop scooting up the bed), a nurse who was giving me something in my IV then discovered my epidural had never been connected. I will never forget the OBs color draining from her cheeks. She felt awful, but that mistake was a game changer for me. I realized how good with pain I really was and maybe my gut wasn't so off. Months later I was diagnosed. You know others like us are out there willing themselves through life - it's an awful way to live! No recent sit ups for me either ;)!

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perhaps someone can please explain to me why a "textbook" edited by Prof. Grahame titled "Hypermobility, Chronic Fatigue and Fibromyalgia" is used for EDS patients...?

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Not sure I understand the question?

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One opinion is that many of us have Fibromyalgia secondary to EDS. In general FMS, the pain is thought by many (most?) as idiopathic. Two of the most frustrating diagnosis's to have due to lack of agreement and awareness in the medical field itself. The 3 doctors in my family alone have no agreement.

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I'm glad to see this has stirred up a good amount of discussion! I agree that the terminology is arbitrary, like he was bringing it all up from memory or something, but I'm glad that he said to check FMS patients for EDS. I was initially diagnosed with FMS and it no fun running to the ER with another manifestation of what turned out to be EDS, having to tell the doctor on call that my diagnosis was FMS and having him give me the "yeah, I'm sure look." when I complain of tachycardia that's been going on without stop for days.

Because the EDS can contain the symptoms of FMS, but not vice versa, I don't see why there's any reason for them to co-exist. I'm not a doctor (but I play one on social media) but I think I large chunk of people with FMS probably have mild EDS and mild dysautonomia.

The rest of them have lazy doctors who don't like them.

Just kidding. (maybe.)

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@yogateach - the book describes hypermobility syndrome, including mentioning EDS - it's an accumulation of articles, and the blending of EDS-Hypermobility and JHS or BJHS or HMS (Joint Hypermobility Sydrome/Benign Joint Hypermobility Syndrome/Hypermobilty Syndrome is slow in coming .

There was an article published a few years back noting the lack of clinical distinction between the hypermobility type of Ehlers–Danlos syndrome and the joint hypermobility syndrome (a.k.a. hypermobility syndrome) which was published in 2009 by Brad T. Tinkle, Howard A. Bird, Rodney Grahame, Mark Lavallee, Howard P. Levy, David Sillence. It's aim was to get rid of the distinction between the two - I'm guessing that a lot of these articles in the book edited by Grahame and Keer were originally published before this paper (and that's not to say the distinction is still widely seen even yet).

From the paper:
“It is our collective opinion that BJHS/HMS and EDS hypermobility type represent the same phenotypic group of patients that can be differentiated from other HCTDs but not distinguished from each other. Clinically, we serve this population better by uniting the two diagnostic labels. With this approach, we can strive to better define the phenotype and improve measurable outcomes of this patient population. Furthermore, we recognize that it is important that, in those hypermobility patients who develop potentially debilitating symptoms of chronic fatigue or polyarthralgia, whatever the underlying cause, there should be prompt and appropriate intervention [Keer and Grahame, [2003]].”

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.33070/abstract (You can subscribe and print the article for your doctor/s)

Tracy

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tracy, I get the relationship/interrelation of BJHS = HEDS, etc. my concern is with the place of "fibromyalgia" within this discussion... the implication to me is that those with hypermobility are prone to fibro and/or chronic fatigue...? or are they one and the same??

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There were some lectures last year at the EDNF conference of them being interrelated - I can't remember if Dr. Grahame spoke of this, or who else did. I don't believe it was a main point (but I don't have the titles from last year in front of me). I think perhaps the lecture on sleep also covered this as well. I also think Dr. Grahame may have found a large percentage of women who were diagnosed with fibro who were also hypermobile, but it might not have been his research but another speaker's. But one thing I do know, it WAS spoken about at the conference! Maybe someone who was more involved in the content of those lectures will chime in.
Tracy

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Hi all, if you do a google search saying something like "fibromyalgia associated with ehlers danlos syndrome" you will find many articles noting that the 2 diagnoses are frequently seen together -- the consensus seems to be that they are frequently seen together while there are differences in hypotheses as to why this is so. There is a great range of differing opinions, from people who are of the opinion that a fibromyalgia diagnosis in an EDS pt is simply a misdiagnosis of the EDS, to others who believe that persons with EDS are prone to episodes of genuine fibromyalgia superimposed on the EDS...because the collagen abnormalities in that person's opinion make the EDS pt vulnerable to developing fibro. As Qs says above, I did read of a study done noting the frequency of both of these diagnoses co-existing, but don't remember the details, but that study was done in 2000 and I think only came to some general conclusions that weren't very memorable. But I did just find an article I especially like, because it is a good overview of the overlaps seen between EDS, chronic fatigue syndrome, dyautonomia, and fibromyalgia. And the article date is 2010 so it's not all that old..I like this article because it doesn't pretend to have the answers, but rather is pointing out the clear commonalities seen in these various disorders, which are quite striking at times. A friend of mine has fibromyalgia, and started telling me some symptoms she has which sounded just like POTS--so I did a brief review of some articles on Fibromyalgia and was amazed to see that people with fibro may have POTS and dysautonomia, and the infamous brain fog....sometimes called "fibro fog"...really the similarities between these disorders as well as between these and certain autoimmune disorders really is most intriguing. However, I think we must remain tantalized for now, since no one yet has the answers as to what this means. One of the things most of these have in common is that the cause is unknown...if you don't even know the cause, it's really hard to draw clear and definite conclusions about why some people seem to have, maybe, more than one of these disorders. I find it especially interesting that EDS sits there sharing so many of the symptoms and syndromes of these other disorders, since we do know that EDS is a heritable connective tissue disease, which makes it different from the other disorders mentioned, where no such clear heritability is known.
Regarding the "skin pain" described and some of the symptoms described in people posting in this discussion. to me it sounds like descriptions of a type of pain known as "neuropathic pain" which definitely can be hard to pin down and describe -- and this is a type of pain many people with longtime eds will experience...I believe someone else was describing a type of pain called "allodynia" which is when sensations which normally wouldn't cause pain to a person DO cause pain because of the type of underlying disorder responsible for the pain...if I remember correctly, allodynia is a type of neuropathic pain--I am into all these pain descriptions because I have suffered from neuropathic pain for many many years and it is a real tough one to treat and tolerate. I am very fortunate to have an excellent pain management doctor. Without her my life would be very very unpleasant.
Here is the link to the article describing apparent associations between EDS and fibro and other disorders: http://maija-haavisto.suite101.com/joint-hypermobility-in-cfsme-and-fibromy algia-a314422

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