Pain Concern
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Hyper mobility syndrome. New doctor, New diagnosis

So today I saw a rheumatology consultant and a physiotherapy consultant for my big appointment. I have to say for the first time in two years I felt I was really listening to, they sat and took it all in examinded me properly asked questions but no general stupid questions and finally I feel like I might be getting somewhere.

My MRI shows extra bone in my hip joint and an older doctor said it was probably a CAMM Inpingment however then another their doctor said he was completely wrong.

Well today the rheumatologist has said he thinks I’ve got hyper mobility syndrome with chronic pain (and made worse by the bone on my hip) Hes made a huge plan of action for me and really seems like he wants to help I’ve also been booked in for hydrotherapy which I’ve never tried either so I’m finally feeling positive about things. However I’ve never heard of this and there isn’t a huge deal online about this.

Does anyone on here have this or know someone who does or have any tips and hints as to dealing with this?

Thank you x

18 Replies
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I'm glad to hear that you are getting some answers and treatment. Have you had a look at the HMSA uk website for more information?

I have EDS hypermobility syndrome (very similar as your condition) and struggle a lot with my hip too. I hope the hydro therapy is going to be helpful for you.

The best way to deal with it is pacing, pain medication, physio and if you need more support a pain clinic can be helpful.

Take care x

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you may find more information if you search for Ehlers-Danlos syndrome. There are several subgroups of that syndrome, one of which is hypermobility type. Until this year Hypermobility Syndrome and hypermobile type Ehlers-Danlos Syndrome were considered to be the same thing. Then earlier this year a new nosology (classification) of the condition was published, and they now in addition to the several rare subtypes, have two categories, Hypermobility Spectrum Disorder (HSD) and hypermobile Ehlers Danlos Syndrome (hEDS). One is not considered worse than the other, but hEDS has a stricter set of criteria. If you don't have those symptoms they you would get the diagnosis of HSD.

So try using some of those other terms in your search and you will find a lot of information.

There are two support groups in the UK, and one, Ehlers Danlos UK, has a group here on Health Unlocked healthunlocked.com/edsuk

Oh, and yes, we have this in my family and hydrotherapy has really helped my son!

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Thank you so much for the reply I’ve just had a look online and it gave me much more information. I’m hoping my consultant will give me a bit more information with my next appointment and then I can go from there :)

X

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Hi, I have EDS hypermobile with other issues and I have had hydrotherapy. I didn't find it useful to be honest, but it may help you. I'm quite active really considering my health issues but if you are quite an immobile person who doesn't walk much etc then hydrotherapy could be really useful. Good luck.

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Yeah I’m completely immobile I can barely walk to my toilet with crutches and even just getting from the front entrance of a hospital to the car out the front is a nightmare lol. She’s said the hydrotherapy is more for keeping the rest of my body active to make sure I don’t end up developing anything else anywhere else in my body.

I feel if I had been sent to him in the first place 2 years ago I wouldn’t be as bad as I am now and it took my mum to ask for me to be referred to them for my docto to even think about it . He even tried to refer me to gynaecology which has absolutely nothing to do with my hip and thigh pain which is just rediculous lol but I’m hoping I’ve finally found the right bunch of people to really help me.

Can I ask what you’ve found has helped you?

X

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My son says that his weekly visit to the hydrotherapy pool doesn't make him better, but it does stop him from getting any worse. I hope you find the same too.

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Yeah that’s more what she wants me to go and do it for so that the rest of my body doesn’t get worse and gets some exercise and to strengthen it plus gets me out the house and in a pool lol x

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The pain management team have been really helpful in seeing a psychologist, someone to talk to regularly and really vent anger etc, plus plan for the future and help me through the medical system, tips on how to manage appointments etcm deal with awkward medical staff etc, and my GP has been really good but I make sure I only see the same GP. Apart from that nothing really has helped. Good luck.

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Thank you , I’m thinking about asking to see someone to help with my head and with how to deal with it all x

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Me too! And knowing i’m hypermobile helps lots!

You’ve got great replies. So there is not much i can add. Except to say i am 64 and was first diagnosed with hypermobility in the 1990s. More recently my consultants say i have hEDS. All my consultants say that my Hypermobility diagnosis helps them give me the right individualised care for me. So, congrats to your rheumatologist & physiotherapist & also to you: this diagnosis is really going to help you all!

Like some hypermobile people, i am a complex patient with several overlapping comorbidities (all are immune dysfunction & connective tissue disorders...any form of hypermobility is a connective tissue disorder). I regularly attend a lot of different multisystem nhs hospital clinics and will remain under their care indefinitely. I feel very lucky to get so much help, but success depends on me doing my bit too...and physiotherapy is always part of my care plan.

I find the HealthUnlocked EDS UK forum v helpful. Am a member of both EDS UK & the HMSA, and their magasines + websites are also v helpful

Take care & good luck

🍀🍀🍀🍀 coco

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Hi thank you for much for your reply. At first I thought he was trying to fob me off with some weird medical terms that meant I was being dramatic lol but my mum was with me and she’s a nurse and actually explained it all to me properly lol.

The thing is I’ve been told I have so many different things over the last few years that I’m just not sure what to believe anymore but the doctor and physiotherapist both seemed to agree on this and pretty much as soon as he saw me try and walk on the crutches and saw the swelling he pretty much knew what it was straight away.

I tried physio for a long time but found it made me so much worse I tried acupuncture that was awful lol but with the hydrotherapy she explained to me it’s more about helping the rest of my body first before my hip and thigh. The pain over the last few weeks has just become completely consuming and has spread a bit up my back and all the drugs I’m on are making me a bit of a mess lol so I’ll try anything to just make me a little bit better now.

I’m so glad to hear that other people actually have this and that I’m not alone.

Please could you send me the links to anything to do with this condition it would be a huge help.

I’m so sorry you’ve had to live with this for so long can I ask how you cope?

X

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You & your mum are a great team!

Our great UK Hypermobility support organisation (HMSA) has a helpline, here is a link to their contact info:

hypermobility.org/contact-us/

Ehlers Danlos Support UK (EDSUK) also has a helpine, here is a link to their contact info:

ehlers-danlos.org/support/

Basically, i’ve spent my life coping via specialist physiotherapy + Alexander Technique postural training + bespoke orthotic insoles + other orthotics: cervical, lumbar, seat wedges, thumb spl8nts etc etc. Gentle daily strength enhancing stretching excercises. NSAID gel. AND my daily combined therapy prescription treatment plans do help with pain control (my primary conditions are infant onset systemic lupus and Primary Immunodeficiency, with many secondary comorbidities (sjogrens, small cell vasculitis, osteoporosis, osteoarthritis etc etc))

Am so glad you posted. Take care 🍀😘

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Thank you so much for those I will have a look at them now!

Yeah I’m very fortunate to have her and she’s been a nurse for over 30 years and she works in the hospital I’m being seen in so she knows who is a good doctor and who isn’t , which is half of the problem lol. But even she is positive about all of this now so I know we must be getting somewhere lol.

Thank you so much for talking to me x

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My feeling is that mum knows what she’s talking about. I’m happy for you both!

I also just added something more to my last reply above as an answer to your ? about how i’ve coped

Please let us inow how you get on XO

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PS the only physios who have been specialst enough to really understand my health profile enough to actually help me have been the most senior physios at my university hospital physio clinic. In my experience, your average physio really doesn’t have enough specialist knowledge to help us much

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I’m so sorry your going through all of that , you should like an amazing tough women 😊

Yeah a lot of the time she’s not got a clue lol but when it comes to my health and nurse stuff she really does and having her come to my appointments the last few times have really helped kick my doctors into gear lol.

Do you mean like an ibruprofen gel? Does that help? I think I’m going to try that next along with everything else I’m just trying to find the right balance of all my meds and extra things to help. I love doing yoga and the consultant physiotherapist yesterday said to try and carry it on just carefully concentrating on the rest of my body etc.

I am hoping finally I’ve got the right diagnosis and that everything will start falling into place now. I’m missing so much stuff in my sons life and I hate that xx

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Yes, high strength ibuleve gel helps me most, but do check with mum & your GP about safest way to use it in your case

I’ve found Yoga can be v good so long as you do it vvvvv gently

I think you’re on the right road now, with the right help...am so glad! XO

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Ok thank you I will ask her 😊

Yeah I got a very thick yoga mat for Christmas so will give it a go tomorrow. Just need to find a good site to go off of.

Thank you so much for your help and advice

Xx

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