Does anyone else have lupus and hypermobility syn... - LUPUS UK


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Does anyone else have lupus and hypermobility syndrome?

stephaniemae profile image

Hi all :)

I have had a variety of autoimmune diseases over the last ten years (I was diagnosed with MCTD originally but after four years I was told this had progressed into lupus alone). I did however feel glad I had a solid diagnosis and generally I have been reasonable well for a while now. However on Friday I visited my new rheumatologist at Aintree Hospital and he told me I had hypermobility syndrome as well as lupus. I asked him how come I hadn't been told this before and he said 'perhaps no-one has ever spotted it' (!). I asked him if my chronic back pain was this or lupus and he said probably the hypermobility as it means I more than likely have the back of a 65 year old!! (I'm 43 btw......).

So what I really want to know is does anyone else have both of these illnesses? And is my back, shoulder and neck pain (plus horrific headaches) actually caused by hypermobility syndrome and not - as I assumed - symptoms of lupus? I'm a bit confused to be honest and wasn't given any advice as to what I can do next...

Any help would be brilliant!

7 Replies

You might find some information on this site

YES....i'm globally hypermobile with SLE and decades of spine trouble, migraines etc etc

Now my rheumatology dept thinks the paroxysmal haematomas i've had for decades in my hands & feet have been down to the Ehlers Danlos version of hypermobility. i could go on & on about how hypermobility affects my version of SLE. As you probably know, lots of us have overlapping syndromes, e.g. i also have what my rheumatologist calls sicca syndrome (i.e. not full blown sjogrens, but closely related and considered almost the same thing), and i'm considered to have MCTD, plus am being watched closely for vasculitis & there are all the other specifically diagnosed conditions affecting virtually every part of my bod....typical of lupus?

So, yes, i have especially spent my lifetime managing both migraines & spondylosis - spondylosis has especially affected me in many ways over the decades. i.e. facet joint/disc problems in cervical, lumbar & sacral spine are me. i totally know what you mean....when i was your age, due mostly to my degeneration, i felt more like 65 spine-wise.....but i have managed to improve my spine symptoms considerably via lifestyle management, the alexander technique, pilates etc etc + bilateral facet joint denervations from my pain consultant....i'm now 60, and my spine has less pain than it did when i was in my 30s-40s-50s...AND my sle meds (plaquenil+amitryptiline+myco) have damped down any lingering shoulder girdle & pelvic girdle pain....i could go on & on about hypermobile spine very much feeling for you

it's great that baba has given you the HMSA link - if baba hadn't, i would've given it to you! it's a great organisation, the HMSA...when i first discovered this organisation several years ago, it helped me feel a lot less bewildered! i've been here on the HU Lupus UK forum since it began, and over the years there have been several posts about hypermobility - you can try to do a search here on this forum to find them

so, am really glad you posted - hope you'll keep in touch. these are problems i've spent a lifetime being treated for and learning to manage...if there is any way my experiences could help you at all, i'd be glad...

take care

You can have a number of other conditions apart from EDS..diseases aren't so picky.

Your chronic back pain will quite possibly be the reason for your headaches etc. I also have some hypermobility issues, mostly in feet/toes, but suspect in my lower back too as this gives me frequent problems. Not sure if it is linked to Lupus or not, but chances are it is! Advice I would give you is check out some back strengthening exercises, check out knee alignment, if you have flat feet - all this stuff can throw your posture out which causes no end of difficulties. I first injured my back as a child in school PE class and now at 58 I sometimes feel I have the spine of an 80 year old! Good luck and keep positive. :)

I was diagnosed over 15 years ago with Hyper-mobility and eight years ago i was also diagnosed with Lupus SLE following two heart attacks .It has been downhill since but I am fortunate and have a marvellous team of nurses and doctors who look after me. My grand-daughters both have it (MSD ) but youngest has Muscu-skeletal syndrome which has just been diagnosed and she will also will be well looked after treated at the same hospital in the childrens' department

I have a curvature of my spine, 2 broken vertibrae (following a fall) and as a child ,which was not yesterday,ankle problems. I still drive, live on my own but the support from hospital makes it less of a problem. My only regret is the fact that I have passed this disease to my family. Today this disease is better treated as it was when i was a child.and of my lupus sle is the least worrying aspect. Only advice I can give is to get the best treatment available to you . I travel 240 miles for mine .Good luck. Best wishes

PS expand my profile photo as it always makes me smile. .An old one of three of my grandchildren

Yes, me too - originally diagnosed with EDS last year followed fairly swiftly with worsening blood results to be told i had lupus. That was only after we switched hospitals - at the first despite an increasingly clinically obvious picture, they said there would be no way I was likely to have both. Its staggeringly common, I think, and Im surprised there hasnt been more research into it.

Thank you all so much for your comments, kind words and helpful advice. As ever, it's so lovely to have understanding people you can talk to at any time! I will definitely look into some of your suggestions for pain management and I'll let you all know if I find something that works :)

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