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Hypermobility Syndrome

(6 Posts)
user1474625604 Fri 23-Sep-16 11:44:58

Hey smile Newbie here and hoping I am in the right place!

Just looking to connect and chat to other people with Hypermobility Syndrome/variations thereof really!

I'm 22 now, informally diagnosed at 18 following an incident with my knee which demolished it. Ligaments, muscle, cartilage, you name it, he wrecked it. After a year on crutches, begging various doctors and consultants to take it seriously (and being told I was being a 'typical lazy teenage girl' in the process angry ), I finally got an MRI and consequent surgery to pull my kneecap back into place and sort the cartilage out (the ligaments had knotted themselves back together by this point).

It was only at my follow-up appointment that a wonderful doctor actually listened, did the Beighton test and found I scored every point and, seeing as I was suffering with a bad back, a twisted pelvis, constant dislocations in my fingers and toes and less frequent but still prevalent dislocations in my other joints, he was fairly shocked I hadn't had more help sooner.

Only thing is though, I kind of let it slide after that; a combination of being a bit scared to hear how bad it could get for me and just life getting in the way in general. I haven't had a formal diagnosis and I haven't really give much consideration to how this could affect my life until the last couple of months.

Although I have always suffered with the pain in my joints, hands, ankles and knees mainly, it's getting worse and I am finding it easier and easier to dislocate (or at least stretch that bit too far) my joints, especially my shoulders, which cause me no end of pain. I can't stand for longer than half an hour without significant pain and suffering terribly the next day, a night out is always cut short by my knees causing me too much pain, I struggle to do the hours I am contracted (7:30-5 5 days a week plus a half day every other weekend), I go through phases of chronic fatigue (I can sleep for over 12 hours a night and it still isn't enough!), I'm terribly clumsy (I fell down the stairs twice in a week, breaking ribs and my elbow)... In short, it's really affecting me.

Basically I am just wondering how best to proceed from here. I am aware I need a formal diagnosis but what can I expect after that? Plus how should I go about getting a formal diagnosis?

If nothing else, I just feel like I would like to talk to other people about their experiences and how they help themselves, how it affects them day-to-day. I used to do pilates and cycle but tbh I don't think the cycling helped at all and unfortunately my pilates instructor retired and I haven't gotten back into it!

Sorry for the essay, just getting it all written down has helped a bit!

hellsbells99 Fri 23-Sep-16 11:50:44

My 18 year old DD suffers with this. She is always worse when she doesn't exercise and around her period. She straps her knees with KT tape when she knows she will walking quite a lot. She also takes iron tablets, vitamins and diclofenac when required, and has physio. You could probably start by getting your GP to refer you for physio.

user1474625604 Fri 23-Sep-16 12:03:48

Thanks for replying smile
Oh yea, I go to pieces around my time of month, it's almost worth me writing those days off as a dead loss sometimes! I'll look into the tablet suggestions, thanks!
I did get referred for physio back when it was 'just' a knee injury, but I didn't find it helped so I went to a private physio, who was brilliant, but rather expensive and at the time, I still hoped I would get better! I might get her back on the phone!

violetsunflower Fri 23-Sep-16 14:06:54

Hello,

I have this mildly and only developed issues after pregnancy and thyroid issues which weaken muscles further.

I did discover a very helpful website as well as a forum though i think they operate mainly through face book now.

I do notice issued around my period. There was a lack of clarity when I looking into it as to which hormone was the main issue, though you do release relaxin then too actually.

I would look into it as there's a lot of advice. Physio and Pilates are seen as the best treatments; I found swimming helpful too. Learning to pace is difficult but necessary too.

http://hypermobility.org

violetsunflower Fri 23-Sep-16 14:11:37

Also, this website is highly irritating and I find the author a tad pretentious but it did actually help me finally work out some key things around how I handled pain and fatigue.

http://www.paintoolkit.org

I think looking into if there's any contraception that could help you control hormones that could be helpful but it might be trial and error.

I'd recommend really making sure your vit d levels and iron etc is good to really help out with fatigue. Iron would be ferritin and normal is over 70. (Just incase - though hms does go hand in hand with fatigue).

OvariesForgotHerPassword Fri 23-Sep-16 14:24:40

There's a spoonie thread on here somewhere that you may find useful!

I'm in a similar boat, I'm 22 and have Ehlers Danlos, one of the symptoms being severe hypermobility and dislocations. Most recent was my shoulder dislocated by an emergency stop in the car, you have my complete sympathy! Mine got worse after having my daughter, but I've been severely hypermobile since birth.

Physio and pain management is useful. I see a physio regularly and an occupational therapist once a month for advice on pacing myself etc. Through pain management clinic you can also see a psychiatrist and a medication specialist but I didn't need psychiatrist and declined medication as I take enough for the other aspects of EDS as it is, but those options are open to you if you ask for a referral to pain management (also called Musculoskeletal Early Intervention Team).

It is horrible because you feel your joints deteriorating with every dislocation. My physio said I'd be looking at hip and knee replacements at around 40 which shocked me a bit, and I do find myself ending up more and more on crutches.

For your hands and fingers, invest in some really good supports. Lots of people swear by ring splints but I don't like them. Thumb, wrist, elbow, shoulder, ankle and knee supports are available in boots and they're good.

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