HMS advice (and getting Rheum appt)

[ipmacs]

Hi everyone,

I'm really sorry for posting in EDS but I couldn't find another forum similar, and I know certain EDS types are the same as HMS (think EDS3?).

My physio has "diagnosed" me with HMS about 5 years ago, with a score of 8 out of 9 I think it was but it was tat long ago I can't remember! I am ridiculously bendy. 5-6 years ago I dislocated my shoulder in my sleep and battled countless medical professionals to insist I had done it in my sleep (they were adamant I must have done an injury like contact sports or something). For 5 years I did my physio, core strength, shoulder exercises and had my scans. Scans were all clear except showing it was exceptionally loose in the joint.

My original Consultant was rather dismissive, told me my options were to "get on with it", exploratory surgery or 2nd opinion - and by the time he'd finished listing these options he decided "no I'll withdraw the exploratory surgery option because we won't find anything". I went with 2nd opinion and had a fabulous Consultant who really understood HMS. He did my Beighton test, looked at all my other joints and then focussed on my problem shoulder. He then said about the stabilising surgery (Bankart Stanmore Type III) which I opted for. I knew with my condition that surgery is never the nest option but it had been 5 years and it ruddy hurt - I couldn't open cupboards let alone doors with that side. I thought it would either work or it wont.

After the surgery he came round with a huge grin on his face - said the stabilising had gone well however they had found a "huge labrum tear posterior" and that it was dislocating at the back and not the front like we had suspected. Cue me wearing a ridiculous sling for 4 weeks (hell!). However - it has worked. I already am on less painkillers and my range of movement is already fantastic. Don't get me wrong I am about 10 weeks post-op so there's still a long way to go and I'm developing frozen shoulder - however we think it's due to my shoulder being in a problem position for 5 years and it's been fixed so it's one of those things. Even with the frozen shoulder I can move it better.

I am chuffed. However I wondered how I go about seeing a Rheumo? I've seen people posting in here about it but I don't know how to request one. I've never seen one and I want them to properly say it's HMS or EDS type whatever. Everytime I see a medical profession I have to say "Hyper Mobile Joints" because no one has ever told me it's HMS or EDS. I get tired a lot faster and my joints wear out (in terms of fatigue) a lot quicker than everyone elses - they bend all over the place and I have to consciously try and make sure they don't hyper-extend which is a chore on it own. After walks my hips are agony, and them plus a lot of my other joints click and grind if they're not sat properly in the joint.

I'm doing physio and the physio I see for my shoulder is fantastic - she really understands the condition and always tells me when to stop something (like my shoulder excercises, she knows I can't tell when the shoulder is "supposed" to stop). Can I ask her to refer me just so I have it on paper and can stop being dismissed by certain medical profs all the time or do I request this via GP?

I'm the first in the family to have extensive problems with my joints properly seen to/diagnosed, however my Uncle was medically discharged from the Army because of his knee, my sister had horrendous problem with her knees and my Auntie has MS. My dad also has a variety of issues bless him and is having Spinal Surgery in a few weeks for nerve damage due to Sciatica (or something about calcified deposits?). So there's definitely something that runs in our family but there's only me who wants to be properly diagnosed so I can do the right physio and do what I can to prevent future problems (well, as much as possible).

Sorry to be so long winded. I do hope you're all okay and not suffering much today. Thank you so much to anyone who can offer help. xxx

[Jay66]

It is nice to get a diagnosis but in reality it will change absolutely nothing. If you have a good physio (worth their weight in gold) and pain medication, then that is much more than the medical profession has to offer.

I got my referral to rheum. by simply outlining my symptoms and asking for it to be taken seriously (I may have cried a bit too...I was near the end).

Unless you have some skin or vein involvement, the NHS rheum. will happily confirm JHS and send you home.

[Barnclown]

Basically, I agree with jay

However, IF you can see a rheumatologist expert in EDS you'll get the most informed & thorough diagnosis. Even if it turns out your diagnosis isn't strictly speaking EDS, an expert can help you to understand your condition, and could point you in the direction of rheumatologists in your area who have interest in hypermobility syndromes.

Here is a link to the part of the EDS UK website that provides info about UK EDS clinics:

ehlers-danlos.org/patient-s...

I think your post is grrrreat! Every detail can be interesting & helpful to others here. I'm just sorry any if us have to live with all this stuff. I think you're amazing: hang in there

Please let us know how you get on

🍀🍀🍀🍀 coco

[Jay66 in reply to Barnclown]

Yes, my fairly downbeat response assumed a referral to a general rheumatologist rather than a specialist. I don't know how many of them there are across the country - it would help if there was an online summary of which ones were knowledgeable or even interested in hypermobility issues. Is there a list?

[Barnclown in reply to Jay66]

Yes: if you click on the blue link in my 1st reply in this discussion, you'll be taken the the offical Ehlers Danlos UK website's listing of clinics in England & Scotland. Once you get to that website, you'll see 2 red panels: one for English clinics & one for Scottish clinics....all you have to do is click on the red panels and the clinic lists will appear on your screen

[Jay66 in reply to Barnclown]

Thanks that's brilliant!

[Kate37]

Hi

Your Gp can refer you to a rheumatologist but as the other reply mentions the rheumatologists have such a wide variety of expertise with some being dismissive and disinterested with minimal knowledge to others being fantastic, helpful with life improving suggestions/treatments. For me a good physio and some insoles from a podiatrist with eds knowledge have really helped. I hope you continue to improve.

[Tillyray]

Hello ipmacs.Don't worry about posting on here, you're in the right place. A lot of people are confused about what they have wrong, dont understand their diagnosed labelling or dont yet have a diagnosis and seeking advice..all three apply to me!

It sounds like you have had an awful time with pain.I am so sorry to hear you have had to suffer with it...It is good to know you have had some supportive medical professionals and had some success.

Sadly your story isn't unusual, as so many with these conditions get wrong or inappropriate treatment and a lot are left - like me- to struggle along for years because GP's and general consultants have little or no knowledge of what is really going on, so you are right to pursue a diagnosis.. It can be a very long and difficult journey but stick with it, you owe yourself the best care.

You just need to ask your GP to refer you to a rheumatologist, but I would advise doing your homework first as a general rheumatologist will not be able to diagnose EDS and is likely to tell you what you already know about hour hypermobility.They do not have understanding that it is a multi systemic condition which can be affecting you in lots of ways. You should contact the hmsa or eds helpline and ask for any hypermobility EDS consultants that you could be referred to on the NHS - I dont know how easy it is to get an appointment- Or go to the private Hypermobility unit in London at St John's & Elizabeth.

Good luck and best wishes x

[ipmacs]

Thank you everyone, that's really really helpful xxx