This is an interesting one – Ehlers-Danlos syndrome & fibromyalgia – two conditions that can be confused with one another at times, but are they linked? I did some research to understand this.
I have both Ehlers-Danlos syndrome and fibromyalgia. There are many people like me who have both or are suspected to have both and we’ve all tried to grapple with questioning the connect between these two medical issues.
Let’s understand what both conditions are, how they’re both diagnosed it, whether they’re connected and what various studies say about them.
Please remember that I am not a medical professional – I am a patient with a perspective through experience of living the conditions, talking to my doctors and many patients like me. Please do not see anything I say as a form of medical advice – for that, please see your doctor.
If you would prefer to watch a video version of this blog post then you can right here on my YouTube channel. If you would rather read then scroll on…
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndrome (EDS) is a connective tissue disorder that causes a defect in the structure or processing of collagen, a protein.
There are 13 subtypes of EDS and I am have the hypermobile subtype.
Diagnosis is based on the type of subtype you have.
In the hypermobile sub-type your symptoms, along with how you do in the Beighton Nine-Point Scoring System you are the diagnosed or not diagnosed with hypermobile-EDS.
Here’s a video of the scoring system…
I know I’m rushing through the basic of Ehlers-Danlos a bit, but all for very good reason, because when we look at EDS in the context of fibromyalgia, the most important connect that confuses these two conditions with each are are their symptoms, so…
What are the Symptoms of Ehlers-Danlos Syndrome?
Symptoms depend on the sub-type you’re battling and subtypes tend to have overlapping symptoms as well – for example, if I have hypermobility issues, it doesn’t mean that I may not bruise easily, which is a symptom of the vascular subtype.
Relevant Readings:
Here are the classic EDS symptoms (but they’re not the only symptoms faced because every EDS patient is unique battling varying symptoms – this list is only a basic guide to help us connect it to fibromyalgia):
- Chronic joint pain
- Chronic muscle pain
- Fatigue
- Temporomandibular joint disorder (TMJ)
- Osteoarthritis
- Loose joints
- Skin hyper-extensibility
- Dislocations
- Slow healing
- Scarring
- Tissue fragility
- Headaches
- Dyspareunia
Let’s move onto fibromyalgia…
What is Fibromyalgia?
Fibromyalgia is an autoimmune disorder that presents itself with fatigue and widespread musculoskeletal pain. (recent research on fibromyalgia being an autoimmune disorder – linked here)
Here’s more…
What are the Symptoms of Fibromyalgia?
- Chronic joint pain
- Chronic muscle pain
- Fatigue
- Pain & Tenderness
- Temporomandibular joint disorder (TMJ)
- Dyspareunia
- Fibro-Fog – lack of concentration
- Stiffness
- Numbness
- Twitching
- Swelling & Tingling of Hands & Feet – known as Paresthesia
- Tension Headaches
- Sensitivity to Heat, Cold, Light & Sound
- Problems with Urination
- Painful Menstruation
- Irritable Bowel Syndrome
- Memory Issues
- Restless Legs Syndrome
- Depression
- Sleep Issues
- Anxiety
How is Fibromyalgia Diagnosed?
There are 18 tender points on the body that indicate fibromyalgia, of which in the older guidelines, 11 would need to have been triggered for fibromyalgia to be diagnosed, but as the Mayo Clinic explain:
“… fibromyalgia symptoms can come and go, so a person might have 11 tender spots one day but only eight tender spots on another day. And many family doctors were uncertain about how much pressure to apply during a tender point exam. While specialists or researchers may still use tender points, an alternative set of guidelines has been developed for doctors to use in general practice.”
So now, the new guidelines for diagnosing fibromyalgia is…
“Widespread pain lasting at least three monthsPresence of other symptoms such as fatigue, waking up tired and trouble thinkingNo other underlying condition that might be causing the symptoms”
What we must remember is that fibromyalgia can’t simply be diagnosed through regular testing like a MRI, X-ray or blood tests, or anything else out there. It works on the process of eliminating other conditions and on the symptoms present.
But here’s where the kicker begins…
Are There Any Similarities Between Ehlers-Danlos Syndrome & Fibromyalgia?
If we look at the symptoms of both conditions, we’ll find a great deal of overlapping between them which can make many of those with EDS believe that they may also have fibromyalgia.
I know I’ve mentioned earlier one of the criteria for diagnosing fibromyalgia is that there is no other underlying condition causing the issue.
But I don’t believe that if you have fibromyalgia then you cannot have for example rheumatoid arthritis (RA) – but that’s my personal opinion after having spoken to patients who have been diagnosed with fibromyalgia and other medical conditions that cause body pain – including myself who has been diagnosed with RA, fibromyalgia, EDS, endometriosis and other issues.
Again, I’m not a health professional but there are just too many people out there for whom fibromyalgia isn’t the only medical condition in their life making it tough to believe that you can’t have an underlying condition to have fibromyalgia.
Is there a Connection Between Ehlers-Danlos Syndrome & Fibromyalgia?
Let’s break this down…
We have to remember that EDS is a connective tissue disorder and connective tissue is found everywhere in the body – and repetitive injuries (possibly through laxity or even falls or through everyday activities like lifting a vessel), pain can trigger anywhere – be it the skin, joints and even the ligaments.
Let’s also remember that EDS is rarely diagnosed, so if the doctor does not know about it or doesn’t look for hypermobility or doesn’t bring together any of the other EDS symptoms then it could be easy to only be diagnosed with fibromyalgia – which could then possibly be a misdiagnosis.
But but but… if we go back to the old form of diagnosing fibromyalgia – the 18 tender points mentioned earlier, it’s very possible for these tender points (at least 11 out of 18) to also be positive along with ALSO meeting the criteria for hypermobile Ehlers-Danlos syndrome – could you then not have both conditions?
Because for some hypermobile-EDS can be localised to a few areas and fibromyalgia trigger points still be active in other areas of the body.
From Pro-Health:
“A 1993 study published in the Annals of the Rheumatic Diseases suggests there is a strong association between joint hypermobility and fibromyalgia in schoolchildren and joint hypermobility may play a role in developing fibromyalgia.”
My rheumatologist has diagnosed with me with both conditions as I match criteria for both of them despite some of the symptoms over-lapping, but because the form of treatment for fibromyalgia may increase tissue injury and aggravate my EDS, we choose to focus on treating EDS more.
What I mean by “form of treatment” – Fibromyalgia can be helped through certain forms of exercise, but that very exercise could be harmful to those with EDS, so you do need to be very careful in creating the right balance in treatment for your various conditions.
Relevant Reading:
- 11 Ways to Treat Fibromyalgia if You Have Endometriosis
- Understanding the Connect Between Endometriosis & Fibromyalgia
In conclusion – from a patient’s perspective and the testing I’ve gone through, I believe I have fibromyalgia too – along with EDS, arthritis, endometriosis etc – but the only difference is, fibromyalgia doesn’t show up conclusively in a scan or a blood test.
So until it can be proved otherwise, I will stick to my trusty rheumatologist and follow the plan laid out by her for my fibromyalgia and Ehlers-Danlos syndrome.
Additional Information: as a resource, I would suggest that you read more about the studies on the EDS-fibro connect and the confusion they present:
1. Fibromyalgia & Chronic Fatigue (for more information on hypermobile EDS and fibromyalgia.)
2. International Journal of Clinical Rheumatology: Skin ultrastructural similarities between Fibromyalgia and Ehlers-Danlos syndrome hypermobility type
3. Pro-Health: Does the Rare Disease EDS Plague Fibromyalgia?
That’s it for this one – if you have any experiences to share or even disagree with what I’m saying – I would love to hear you so please do express your views in the comments section below – thank you 🙂
If you’re a social media person, then you can follow me on Instagram, Twitter, Facebook or Pinterest.
~~~~~~~~~~~~~~
Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
This was very interesting to read. I was recently diagnosed with fibromyalgia but my doctor says that I’ve likely had it for the past 20 years. I was also tested for EDS but thankfully I do not have it. Although I have many of its symptoms. Reading your article I’m thinking maybe they are just fibromyalgia symptoms. Thanks for writing this.
I have both conditions as well, and there are a lot of overlaps with pain etc. I often don’t know if my hip pain for example is from EDS or from fibromyalgia. I find gentle exercise is helpful for both, but it’s so individual I know!
I was diagnosed with Joint Hypermobility Syndrome when I was young that caused me a lot of pain- always complained about knee pain mostly but other joints too- that pain is worse now. And then diagnosed with fibro at age 20. I think they are comorbid because the chronic stress to the body with hypermobility that is severe can be a trigger for fibro… as it often needs that sort of Impactful trigger to cascade its chronification and symptoms. But I don’t know if I have EDS because I never was treated for my JHS and when they changed the criteria… since I never saw anyone and no one I talk to gets it it ceases to be something that concerns my doctors even though it actually is a cause of a lot of pain.
Very interesting read, I never thought about this before. Fibromyalgia is a tricky diagnosis and it overlaps so many others.
I appreciate the video that gives informal testing to see if you may have EDS. I had students who could do unusual flexibility. We’d laugh and think it was cool. Had I known, I would have let the parent know that this might be something for a doctor to check out in them.
FMS has so many comorbid. I think if you have EDS, and are constantly putting your joints out of place, it would seem that would ignite an over-amplified nervous system over time.
Comorbidities are all so confusing especially when the symptoms are systemic and overlap everywhere. 🙁
I too have fibromyalgia and EDS hyper mobility. Do others in your family also suffer from EDS? It is often found in families and I have multiple family members who have both fibro and EDS. I read an article a couple of years ago that discussed what is missing in this familial type, but can’t recall the details. It could be treated by infusions of this factor (I wish I could remember the name) darn fibro fog! I wish more research was being done on various autoimmune diseases. They are so crippling to so many and we need help!
Sincerely, Vanessa
Hi Vanessa,
I don’t know any men troubled by such issues of either EDS or fibro in my family but I do believe that the women did have issues but women naturally just dealt with the pain without being diagnosed, so no formal diagnosis of either conditions in my family other than my own. And yes, I agree, I wish there was more research!
Thank you so much for sharing 🙂
Very interesting I was diagnosed with HEDS in my 30s but have always been super flexible. The drs here in my rural area had no idea on the subject and I was always just called double jointed. But now I have some really troubling symptoms that effect me being able to work and do daily things more than I used to( muscle movement attacks, extreme fatigue even more than usual). My son also is having the same issues and also has HEDS under the new criteon. My mother, who is also “double jointed” was diagnosed with fibromyalgia a few years back but no talk of EDS. Which makes no sense to me.. I also have a first cousin who has MS on the same side as my mother. So those two autoimmune are what the drs are looking at now since they all overlap in symptoms. Very interesting read. Put some stuff into persective.