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Hi, just got Ehler's Danlos Hypermobility Type after 40 years of symptoms, any advice?

EDS Hypermobility, familial. Finally getting the diagnosis at 40, have had signs & symptoms since birth, like reflux, hypermobility, vomiting, gastro-paresis, IBS, so many and varied. POTS all through childhood, exercise intolerance, got very dizzy, headaches. The harder I tried, the slower I got. I couldn't jump a hurdle to save myself! On top of that, I developed Lupus at 16, but this just complicated things, I would say that I was unwell, explain the many symptoms, Gastro, neurological, respiratory, cardiac, autonomic nervous system stuff like body temperature rising when ever I exert my self, regularly up to mid 38's or higher on occasions. I am physically poorly coordinated when it comes to gross motor skills, have history of tripping over the smallest things, tripping up stairs, double jointed in fingers, wrists, shoulders, hips, knees, ankles and toes. I dislocate and sublux many of these joints doing the simplest things... only advantage of being so loose is that they pop straight back in and dont hurt for too long.I've been going rapidly down hill for past year and have seen more dr's than I thought possible. Been through the mill about voice changes, dysphagia, migraines with visual auras, extreme fatigue, malaise, neuralgia, myalgias, a pain across my lower ribs that drives me spare. Tinnitus, visual disturbances, I got to the point when my husband has had to stay home to look after me & children and I went into hospital. I get so short of breath doing normal day to day things, night sweats, soaring temperature when I do things like washing, sweeping etc. I've been having increasing trouble swallowing, smiling (? anyone else?) chewing, have TMJ problems for past 17yrs. I get a fine motor tremor in my hands and some times legs, sometimes get numb.Undoubtedly I have dysautonomia, temp control out of whack, BP fluctuates wildly, get very fast heart beat at times and down to 48 at other times. I get runs or irregular heart beats and have passed out a couple of times with orthostatic hypotension.At times I've twisted my ankle so badly the ligament ruptured and had to have a tendon repair. Knee with OA and very lax band of anterior cruciet left, put off reconstruction, sick of Drs & hospitals. numb patches on arms&scalp.Endometriosis, meat and disaccharide sugar intolerances. Sore hips and shoulders, poor respiratory function, exercise induced asthma and with frequent chest infections. The list goes on. I've finally found one Dr who listened to me, read the medical history I had given him, he also listened to my suggestion that it was EDS Hypermobile type. He ordered appropriate tests and was most interested to know about the rest of the family.(My father suffered with really bad migraines, anaphylaxis to couple of things, neck pain, heat intolerance and died of heat stroke at 48. Many members of his side of family have overt signs and symptoms.Males lack the hypermobility.) Had stress echo done the other day which showed exercise induced hypertension and L ventricular relaxation insufficiency. Thank goodness I've finally found a Dr that would listen!!!!!! I've even suggested this very condition to my Immunologist twice, once 5 years ago, most recently last year when I had printed out stuff on it. He dismissed it as I don't have hyper-extensible skin (which I tried to point out wasn't a feature of Hypermobile sub type). I really hope that we can get somewhere now and stop being treated like a pack of hypochondriac, malingering medical nightmares?? Any hints or suggestions would be more than gratefully received. Any genetic tests available to check the family? My 4 & 2 year old children both have signs of EDS too. I really hope to make the path easier for them if it is this.What tests should be done? Another question is about haemachromatosis. I stopped eating all meat when I was 12 because it gave me terrible stomach cramps and diarrhoea. I've had exceedingly long and heavy periods (as did my grandmother (fathers mother), also aunts and cousins with same, it was suggested to my sister once as she, who is also veg has Hb of ~14)) and never been iron deficient. Do you think there is a connection? I noticed a similar question on a page on your site "hemochromatosis by sandysandy, Nov 09, 2007 10:43AM"
Could it be part of the EDS syndrome?
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Avatar universal
I have EDS the pain is excruciating it has changed my life for the worse all so ave passed it on too my son living with EDS is not a life to live anyway yes it unfortunately it is one of the many side effects your jure will be wearing and it make it to saw to to tired and no strength to chew meat my son been the same way from birth am only just starting with the joint pain now it makes sense as it proven affect most women in mid 30
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