It’s staggering the difference a continent makes. I’m on an American Ehlers-Danlos Syndrome (EDS) forum where no-one has ever heard of Myalgic Encephalomyelitis (M.E.). I’m also on a British EDS forum where many people have either had, or still have, a diagnosis of M.E. alongside their diagnosis of EDS (as I do). And on the Dysautonomia forum DINET, there are people with a primary diagnosis of POTS whose symptoms are indistinguishable from M.E. and in some cases EDS.
And then there is the mast cell connection: mast cell disease is quite routinely diagnosed in people with EDS in America, but never diagnosed in people with EDS in Britain. It’s also talked about a lot on M.E. forums in Britain, but again not diagnosed as so little seems to be known about it here in the UK. So what’s going on? I wish I knew!
There is an overlap of about 90% between the symptoms of EDS, M.E., Dysautonomia (usually POTS), and Mast Cell Disease. The most common overlaps are:
- Widespread pain/fibromyalgia for which no reason can be found on scans or X-rays. Also neuropathic (ie nerve) pain.
- Muscle weakness.
- Chronic Fatigue.
- Sleep disturbance.
- Migraine/chronic headache.
- Brain fog.
- Problems with memory, concentration, information storage/retrieval, word finding and other cognitive functions. New-onset dyslexia or problems with spelling and/or numbers.
- Low blood pressure.
- Orthostatic intolerance.
- Nausea and/or vomiting.
- Gastro-intestinal issues: IBS-like symptoms, slow/fast motility, pain, cramping, early satiety, GERD (reflux), bloating, swallowing difficulties.
- Dysmenorrhea/hormone problems. Increased incidence of endometriosis.
- Frequent thirst.
- Frequent urination.
- Cold hands & feet/Reynauds Phenomena.
- Periods of tachycardia, skipped heartbeats, pounding/strong heartbeats but usually with normal ECGs.
- Shortness of breath, chest pain for which no abnormality can be found.
- Anxiety (not mentally induced).
- Drug sensitivities or drugs not working properly.
- Food allergies/intolerance.
- Muscle twitches. Muscle spasms.
- Restless Leg Syndrome.
- Numbness. Pins & needles.
- Changes in body temperature: cold when it’s hot, hot when it’s cold.
- Blurred vision, problems with focal adjustment (short to long distance and vice versa), other eye issues.
- Sensitivity to noise and/or light.
- Feeling ‘wired’.
H-EDS, M.E. and MCAD are diagnosed by exclusion, based on symptoms and medical history (though occasionally MCAD will show abnormalities). The only disease for which a diagnostic test is available is POTS, yet one can have POTS and still also have EDS, MCAD and/or M.E.!
So, what about the differences?
- In H-EDS, there is joint hypermobility. This is absent in MCAD, M.E. and POTS.
- In EDS there is skin involvement, ie. skin fragility, stretchiness, easy bruising, velvety feel. This is absent in M.E., though easy bruising has been reported in both MCAD and POTS.
- In EDS, a hot bath is often beneficial. In M.E., POTS and MCAD a hot bath often makes things worse.
- Pregnancy often makes EDS worse, whereas it can temporarily improve M.E. & POTS (not sure about MCAD).
- M.E. usually follows an acute immune system attack, eg. catching flu or being vaccinated, although trauma has also been known to be a trigger. Infections can also trigger both POTS and MCAD in some people. EDS is genetic but can be a-symptomatic until, in some people, an infection or trauma triggers a symptom flare.
- In M.E. there is post-exertional malaise, not just fatigue. This means you feel like you have a dose of flu following exertion, sometimes with even minimal activity like dressing. The malaise is often delayed, and can appear 24-48 hours after the activity.
- In M.E. fatigue is not relieved by rest. In EDS & POTS, fatigue is relieved by rest. In MCAD, fatigue is absent for some people, though in others can be significant.
- In M.E. there are on-going immune-activation symptoms, such as sore throat, malaise (ie. feeling poorly), fevers/chills and intermittent tender/swollen lymph glands, which aren’t seen in EDS, POTS or MCAD.
- In MCAD, anaphylaxis in varying degrees is widespread, but not found in M.E., POTS or EDS. Or maybe it is seen in both M.E. and POTS, but just not diagnosed as being anaphylaxis because it presents as chronic, and not the more common acute, type of onset?
- In MCAD, hives and histamine-related oedema (swelling) is widespread, but not found in M.E., POTS or EDS.
- In MCAD, Dermographism is common but not found in M.E. POTS or EDS.
- Flushing is common to both MCAD and POTS, but not seen as a symptom of M.E. or EDS.
Both M.E. and MCAD can be life-threatening diseases. H-EDS is not, although other types of EDS (such as Vascular) are. I’m unaware of any deaths being officially attributed to POTS, though they may exist.
When you look at the evidence, the common symptoms between these diseases far outweigh the differences. I have no idea why M.E. isn’t diagnosed in America as routinely as it is in Britain – there are certainly people on both the EDS and DINET forums who have post-exertional malaise and who would fit the International Consensus Criteria for M.E.. I also have no idea why a diagnosis of primary POTS is much more common in America than the UK, where POTS is usually diagnosed as a secondary symptom in conditions such as EDS and M.E.. And why should MCAD be more common in both EDS, POTS and M.E.?
The Elephant Project is a world-wide initiative which is looking at the link between EDS, Dysautonomia, M.E. and Mast Cell Disease. Diana Driscoll is also looking at the symptom overlaps – you can fill in her questionnaire here. One thing is for sure – the similarities between these illnesses can’t be mere coincidence.