Hypermobility and ra : I have been trying to find... - NRAS

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Hypermobility and ra

lolly_mitchell profile image
7 Replies

I have been trying to find anything on the Internet about having both conditions and maybe I can find someone one here...

my rhumy concentrates on the ra and brushes off the hypermobility. Saying that I can't do anything and it'll always be painful. I find it hard sometimes distinguishing pain between the two. Feeling alone :-( xxx

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lolly_mitchell
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7 Replies
francherry profile image
francherry

Hello Lolly, sorry to hear you're feeling alone. And how rude of your rheumatologist. I've found on the whole I need to do lots of explaining to get health professionals to understand full implications of having hypermobility & way it affects me. Having rheumatoid in itself can be isolating but when you have other conditions like lots of us do it feels like a double whammy. I also have hypermobility (as part of Hypermobility Ehlers-Danlos Syndrome) and can relate to what you're saying. Definitely hard to tell sometimes which pain is due to RD & which is hypermobility. An MRI showed frayed cartilage in my hips due to HEDS for example. It is agonising to stand & walk but sticking to physio as don't want a double hip replacement yet as have problems with surgery due to hypermobility. Feel free to send a PM -I'm out of the country at the moment but wanted to let you know you're not alone & there are things that you can do to help like hydrotherapy and physiotherapy. Have blogged about hypermobility and RD as I've never met anyone else with both. Take care x

PJsorefeet profile image
PJsorefeet

I too have both. I'm more lucky than you as my hypermobility doesn't cause me pain. Physio and strengthening is your only route really. Make sure your team refer you.

the best way I think about it is that our joints don't have an end point so when we use them you can easy go past where the joint should stop. This extra range, if used often puts tress on the joint and can cause pain. If that joint is also sore because of RA you've got a double issue. The physio strengthens and allows you to control the joints so you don't go past its normal range, don't over stress the joint and so don't cause the extra pain. Posture is also a massive deal so physio helps with that too.

good luck and hope you feel more in control of your rheumy team soon

let us know how you get on

Penny

Natikins profile image
Natikins

Hi lolly, I know exactly how you feel. I also have both and my rheumy never discusses the hms just ra saying it doesn't matter because ra is the main thing. But the ra meds don't treat hms. Physio really is the best thing, but I find it really difficult finding exercises which don't cause pain from either the hms or the ra. I often feel very alone too, I don't know any one with either ra or hms let alone both. But looking on here I know I'm not and I hope you know that too.

southwest profile image
southwest

Hi, I have both too, although my hypermobility is not too bad. However, I often find it difficult to work out which condition is causing the pain sometimes. I also have Raynaulds .My Rheumy is sympathetic but (kindly) laughs and says "you are bendy"!

I can only echo what everyone else has said but also I take some Pilates classes being careful not too over stretch and find this very helpful. Also, I am sure you are careful with your feet but RA plus hypermobility has given me loads of problems and I have to wear good supportive shoes I guess this is the case with most of us on here.

People look a bit puzzled and smile when I say hypermobility is causing me pain so I do know how everyone feels.

All the best

Southwest

Beautifulmovement profile image
Beautifulmovement

Hi Lolly,

I have both conditions too. My hyper mobility kicked off about 4 years ago whereby my hips and shoulders locked in place, and I'd end up in A&E crying in pain. I saw a specialist who also told me there is nothing they can do for it, apart from give me strong painkillers when it flares and physio. Physio ended up being pointless as they wouldn't treat me unless I had a flare up and I could never tell when that would be. It was also at this point they did bloods and saw raised rheumatoid factor, but they didn't pursue that any further. I happened to have a very bad flare in Sydney and saw a specialist who told me that this wasn't just hypermobility. Fast forward 4 years and I've been diagnosed with RA with also no mention of the hyper mobility, but as you know when the RA flares the pain is very similar to hypermobility. There is definitely nothing they can do to treat hypermobility in terms of medication, it's just the way our bodies are built. I've got mobility damage in my shoulders so they don't function properly.

There is only one thing I've found that helps me immensely and that is Pilates. It has strengthened my core so that my movement comes from that solid foundation, and I've worked with the teacher to relearn how to move my shoulders and hips properly and strengthen the areas around the joint so that there is less chance of the joint moving too far out of my range of motion.

I really understand your plight, if you decide to try pilates I would say go for small classes and reformer classes are much easier for people with hypermobility and RA as the reformer supports your body weight.

I hope you've found this helpful and if you ever need a chat let me know.x

lolly_mitchell profile image
lolly_mitchell

Thanks everyone I feel so much better knowing I'm not alone. I will definately chase up on physio tho had bad useless experience in past. Will keep u posted !! Xx

Rockpool60 profile image
Rockpool60

Hello I was diagnosed in 2012 and have both as well and sometimes find it confusing with the pain as one counteracts the other bendy v rigid. I am on Lefluomide alone now and pain management. She is treating the RA more than my HMS.

Good luck and hope things improve xxx

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