still on the eds and benign hypermobility question

I have congenital hernia,congenital dislocated hips,twisted spine and osteo arthritis hyper mobility in practically all of my joints.my teeth were very crooked but i have had them removed and now have some false teeth,hammer toes. at sheffoeld i got diagnosis of hyper mobile EDS/benign joint hypermobility.prior to that was dx EDS3 or hypermobility syndrome.before that arthritis,hypermobility ,congential hip and fibromyalgia.funny enough also have hypertension but blood pressure meds dont make any difference,have low heart rate and bp can drop a lot. but I understand there is a lot of research going on,and hmsa is now been classed as hypermobility syndromes,so does it mean ,the medics are not sure themselves as it seems people have different symptoms ?

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  • I think 'Auto-Immune' illnesses are difficult for medics to diagnose with most having to be formerly diagnosed by Rheumatologists. The problem is that so many of them have 'over-lapping' symptoms so 'hypermobile joints' can be linked to EDS, HMS, Lupus, Marfans, Mixed Connective Tissue Dissorder....& sometimes it can take years to get an accurate diagnosis (many will take an average of 7yrs to cover all the symptoms, testing & assessing, pooling the information & reaching diagnosis).

    As such you can start questioning how certain the professionals are & whether they are correct in their conclusions. We have to be very trusting at times.

  • I agree with both of you it is hard to diagnose. Some docs dont seem to know very much about this and seem to think it is benign.. many with hypermobility would disagree. Its hard to be told you have HMS and to be given a little pamphlet which doesnt really explain much. I myself cannot see where benign comes into it..it is more than 15 years since I tried to explain to a GP that my joints hurt a lot. Only when my neck started to give me some very worrying symptoms did anyone hear what I was trying to explain. Over many many years I had so many strains and pains that I could not understand. Now got OA , fibro and DDD. As the physio said its a shame it wasnt diagnosed sooner. Find the FB sites have some good advice and it is good to talk to people who do understand and give support. I hit patches of really awful depression because I was made to feel as if I was imagining how my body felt. The good thing is younger people are being listened to and diagnosed. Hopefully they can side step some of the damage that other older HMS/EDS have suffered. As to the question EDS or HMS.. I think its irrelevant ..a lot of overlap between them.

  • Hi there, this section on our website may be of help to you regarding EDS Type definitions and the difference between JHMS and HEDS: ehlers-danlos.org/what-is-e...

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