They have widespread pain, abnormal sweating, episodes of tacycardia, fainting or near-syncope when standing long or from other triggers, episodes of poor depth perception or vertigo with falling and bumping into things, brain-fog, allergies, medication & chemical sensitivities, severe headaches or migraines, IBS or chronic diahrrea, GERD, Raynaud’s, recurrent infections, anxiety and depression, etc. etc. Many, many symptoms that they almost all share with me. There are several with Erythromelalgia (EM), including myself, which is supposed to be very rare and I’ve come across people online who have both EM and EDS. EM is neurovascular and involves abnormal vasodilation.
Among these cousins who have so many symptoms in common, the diagnoses include (among a few others): Fibromyalgia, POTS, Intracranial Hypertension (has a shunt), etc. Everyone was tested for MS, most were repeatedly tested for it but all tests negative. Most also tested negative repeatedly for Lupus and other autoimmune diseases. There have been several with serious lung problems including 1 pulmonary hypertension and 3 caught pneumonia and then lung collapsed (ages mid-30’s to early 50’s). 1 is diagnosed Bipolar and others have been suspected of it but it was ruled out. Some of the next generation who have similar stuff are diagnosed Bipolar. Several had hysterectomies, some very young.
My mother has been incapacitated for around 15 years and required facility care (disabled for 5 yrs before needing a facility) and the only things doctor’s could find in tests was mild hydrocephalus which they said was harmless and not the cause for her “progressive dementia”. Now that doctor’s know it is harmful, she’s physically beyond having a shunt or possibly even getting an updated MRI. She was diagnosed as Schizophrenic in her 30’s but psychiatrists always had doubts that it was an accurate diagnosis. She later thought she had a physical medical problem of some kind but no one believed her because of her mental illness diagnosis.
My father was a family physician and suspected marfan’s may be in the family but the most likely candidates were checked (including myself) and it was ruled out. No one’s been evaluated for EDS or mast cell disease.
I don’t know what we have, but it just seems to me that it could fit this triad of EDS, Mast Cell Disorders, Dysautonomia and maybe mild hydracephalus.
Please excuse any poor spelling or editing. I’m tired but had to post. -Mary
Hi Mary, Your family sounds like the classic “family cactus” of mast cell and hydrocephalus and connective tissue disorders! It’s amazing how we see every condition you described in families with EDS. I hope you are able to review some of the videos and handouts here (even the one on “Biplar? Irritable?” is pertinent to your family. Do you need help finding a geneticist? A diagnosis would be a great place to start! The videos on hypermobile and classical EDS may be what you need to see if you may have EDS. Please let us know how we can help you! Big hug, Diana