Hello! I'm new here, but I really need advice from fellow Zebras!
I was diagnosed with Joint Hypermobility Syndrome by a Rheumatologist in March/April earlier this year, but my symptoms are continuously getting worse. I attend Physiotherapy but the pain is getting so bad I can't do my exercises and I'm relying on crutches to get around. My joints are constantly dislocating and popping and cracking, my stomach hurts all the time and I'm having ongoing digestive issues, my skin is also very soft and bruises/cuts very easy and my muscles just hurt all the time! I'm also constantly feeling dizzy and nauseous and I get breathless just with standing up. I recently found out that other people in my family are having these same issues, which I didn't know about when I got my diagnosis.
I've researched hEDS and the more I see about it, the more I'm convinced I have it. Any advice on how I go about explaining this to my doctor?
Thanks!
Written by
chloeroseeburns
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It is the same thing, near enough. The diagnosis of Joint Hypermobility Syndrome or the even more misleading Benign JHS has been replaced as of March this year with a diagnosis of either hEDS or Hypermobility Spectrum Disorder if you don't meet all the criteria for hEDS. It doesn't really matter anyway - hEDS is the thing to look at, the society to be in, the group to join.
I don't think the new criteria is broad enough but to be fair the old diagnosis of JHS meant nothing anyway.
It took me almost 15 years of every kind of PT and a multitude of all kinds of body work to realize that -rest - is what my body needed most . I did not know I had hEDS then but I finally figured out that all the work I was constantly subjecting my body to was what was aggravating the pain. I don't know if all that negative treatment contributed to my constant fatigue, PoTS and the multiple other illnesses associated with hEDS but at 61 my life is extremely limited . Not what I was expecting at retirement age. I was finally diagnosed at age 54. First by a endocrinologist (new dr to follow my osteoporosis) then by a large university geneticist who did not know how to treat it and there were no doctors in my area. I finally went to a geneticist in Baltimore MD, Dr Claire Francomano who has been studying heritable connective tissue disorders for 30+ years. After her diagnosis I finally felt reassured of the diagnosis and was prepared to talk confidently to my doctors. Knowing this I researched articles relating to my other symptoms with the EDS diagnosis and was able to justify testing for PoTS and a lung disease - bronchiectasis, which is connected to EDS however it's usually not listed in the EDS literature. So it may take more time before you receive the correct Diagnosis But don't give up on just one doctor opinion. Plus whatever their specialty, your symptoms will be viewed only within their specialty. Some rheumatologists are very aware of EDS some are not and in my area they definitively are not.
Hi Chloe and welcome 🙂. I'm sorry to hear that you are struggling. I can relate to how you're feeling, I know its no fun.. My son and I were both diagnosed with hEDS - hypermobile ehlers danlos syndrome- earlier this year by Dr Hakim at the hypermobility unit. I had just been left to rot for over 12 years by my local rheumatologists and other Doctors.I began to deteriorate, and like you, I ended up in permanent agony using two crutches. Now I have a diagnosis, my local Doctor appears to take my symptoms seriously and is following Dr Hakims recommendations. But I am aware that I have to be the one to pass on EDS knowledge, as most medics I come across haven't heard of EDS..
The terminology has recently changed. My understanding is that hypermobile spectrum disorder is diagnosed when a family link to EDS cannot be fully proved I.e for example no other members have existing diagnosis. I would have been given the hsd diagnosis if my son had not been present. But my sons skin signs etc were obvious and he laps over into marfans too..
For me and my son, getting a correct diagnosis was important not only for piece of mind, but in order to get the correct testing for our associated conditions, and to receive appropriate treatment/ management. Although due to lack of knowledge by general medical professionals it means we have to become experts in our condition to be able to direct them..Having found one of the most knowledgeable specialists there is, it is helping us.
The new book by Claire Smith is definately worth having, it is all about hEDS, HSD and associated conditions. You can also obtain much info from the hypermobile syndromes association -HMSA- and EDSuk that you can give to Doctors... I now give leaflets etc to the Doctor's and nurses I come into contact with.. Good luck and very best wishes xx
ps. Physiotherapy is important management to improve muscle tone and strengthen joints. But it must not make already damaged joints worse. It is therefore crucial that the therapist understands your condition.xx
I have the same problem. Diagnosed with Hypermobility Spectrum Disorder by a Rheumatologist earlier this year but have a whole host of other symptoms including scoliosis, gut and stomach, issues, daily headaches, subluxations, Raynauds, CFS and chronic joint and muscle pain, I also believe i have symptoms of POTS. I feel I fit the clinical picture of hEDS more and if i had been seen before Feb/March this year i would've been diagnosed with EDS instead. I feel that i cant argue a diagnosis with a Consultant Rheumatologist and that HSD seems to be treated as a trivial disorder. X
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