Hey @john
I’m Merl, a member of the modsupport team here on Ben’s Friends. I’m in South Australia.
EM is sometimes one of those conditions diagnosed by elimination ie “…If it’s not ‘X’ and it’s not ‘Y’, it might be EM…'“ From my experience (EM was suggested as one of my many ‘diagnosis’, when they couldn’t decide a cause) it seems there can be a number of sources of symptoms. For example, a messaging issue via the central nervous system, or a fluid issue with the lymphatic system. For some it can be an issue of the skin or an autoimmune reaction and because there are so many possible triggers, obtaining firm diagnosis/answers/treatments can be VERY difficult. Some medicos can be very quick and reassuring that they know-all-about-it, but very few actually do. Upon doing a search I’ve only found one specific erythromelalgia clinic in Melbourne for the whole country.
Dr. Sumathy Krishnaswamy | The Erythromelalgia Association
There is also the Australian based ‘RarePortal’ that may have some useful resources.
Rare Awareness Rare Education Portal – Australia’s growing national resource for rare diseases
Because of the range of triggers, it’s often suggested that a broad range of specialisations be investigated for example a dermatologist, an endocrinologist, a rheumatologist and a pain specialist, even a dietitian, as for some people food allergies can be a trigger.
I have had the ‘joy’ (Not) of looking for medical answers, without much luck. We see differing dr’s, all of whom give us differing answers/diagnosis, with differing treatment plans and differing opinions and if you’re not confused at the start of the process, you sure will be by the end of it. Due to all of this I’d suggest asking the GP for a referral to a physician.
A physician’s role is more that of a medical investigator. GP’s can be good for your ’normal’ medical needs, but for more complex issues a more in-depth investigation maybe needed. A physician can order test, make referrals to specialists, obtain reports and collate all of the relevant reports, tests and examinations to arrive at a more holistic overview. Also using a physician reduces down the duplication of scans and tests. Doing it individually, each specialist seems to want the same bloods/scans, to obtain the same results. A physician can cut down that duplication.
Hope it helps
Merl from the Modsupport Team