Has anyone also got a diagnosis of POTS?

[Galaxy2]

Hello All, I have recently been diagnosed with joint hypermobility syndrome with associated pots (postural orthostatic tachycardia syndrome). I would be really interested if anyone else has this diagnosis on top of their sle.

Many Thanks

Jenny

[Chris21]

I and my family have Hypermobility syndrome but not POTs between me, my two daughters and three of my grandchildren all have HMS as well as different auto immune diseases.

[Galaxy2 in reply to Chris21]

Hi Chris

Thanks for the reply, although I was told hypermobility syndrome is not necessarily related to auto immune diagnosis its hard to believe there's no connection. No one in my family has HMS so I think it must have skipped a generation or 2.

[Hidden]

Hi, I have ehlers-danlos type III and systemic scleroderma

[Barnclown]

Synchronicity: this morning I was reading the Sunday times mag 'relative values' piece on Ella Woodward who is 23 & diagnosed with POTS...you probably know her blog & recipe book....but I'd not heard of POTS...

I'm especially interested in your ? because I'm globally hypermobile (ehlers danlos type) complicated by widespread tendon tightening due primarily to infant onset sle going without systemic treatment until 4 + years ago. Typically, I'm diagnosed with a heap of autoimmune secondaries:.simultaneous raynauds & erythromelalgia, sjogrens, lichen Sclerosus etc etc. there is HMS in my family & some autoimmune conditions but so far I'm the only diagnosed case of lupus (Drs have told me my lupus is probably due to months of inutero exposure to the artificial oestrogen DES). I'm now 61, wondering how rheumatology will react when I ask about POTS!

Am glad you posted your ?

[Asarahjohnson]

Do you know of the book deliciously Ella by Ella Woodward? She has POTS.

[Galaxy2]

Thanks for all of your comments, I am very newly diagnosed so still learning and I haven't heard of Ella Woodward but will certainly investigate. I think I'm right in saying HMS is the same as ehlers danlos type 111?

Good luck Barnclown when you ask your rheumatologist, I've had dizziness /light-headedness and tachycardia for years that was unexplained it was only when things really deteriorated that I finally have a diagnosis.

Thanks

Jenny