Hypermobility syndrome

ReformedShopaholic

Only just realised this thread was here. Good to know there are other people on MSE with what I have (sometimes I only mention pain without disease as then I would have to explain to everyone and we all know how hard that can be to do)

I am mostly found on the let it snow thread but have been known to comment on others(though not a lot)

Was born with dis-located hips, had arms and legs that popped out of socket all the time growing up. My mum was told I would grow out of this. Was mostly fine until started with back pain in my teens, had physio and was better until I started full time work, when I would be pretty much exhausted and in pain. After a fall in the snow I had constant pain in hips and legs. Eventually dropped working hours down to 16 a week. This is still hard and I'm on diflofenic and tramadol. I have physio once a month (just to strengthen my muscles). Have seen rheumy this week and now have to see occupational therapist, have an MRI and go on some more tablets(either anti-depressants or ones for epileptics) to relax my muscles?

Wow I've gone on a bit there. Sorry for the long post, just wanted to introduce myself and say hello to fellow sufferers. Especially since we all keep being told this is rare but from the forum and twitter I've discovered lots of people with it.

cally6008

If anyone lives in Cumbria or the North, we're holding an EDS family fun day on Saturday 1 June at Heathlands Farm, Rockcliffe, Carlisle

PM me for more details

Believer91

cabsy83 wrote: »

Hi

I have finally got a diagnosis of HMS after 7 years of complaining of being in pain! I have seen my rheumatologist, a physio today, and have an upcoming appointment with occupational health...oh and I am awaiting my new insoles from orthotics. The pain is slowly getting worse but at least now that its being taken seriously I am being given decent painkillers instead of getting palmed off with ibuprofen!

I was just wondered if there are any other HMS sufferers here who could shed some more light on the condition for me and let me know if there's any help available out there? I've looked at the DLA stuff and I feel like I do need help but as a single mother of two I have no way of not walking despite it being in excruitiating agony! I also struggle to keep up with housework etc at home as I suffer badly with fatigue.

To top it off I'm also being referred to a neuropsychologist for memory problems possibly related to my epilepsy! Joy of joys!

Hi.

I have just started looking at HMS Forums as I have recently been diagnosed with Hypermobility Syndrome myself - but as a rare form. Not only does it affect my joints, but my internal organs also. I can relate to many of your symptoms, as do I suffer with cronic fatique and struggle with day to day tasks. I was diagnosed with Crohn's disease when I was 13 and it has taken nearly 10 years to finally get a correct diagnosis. I regularly see many specialists and similar to yourself a rhuematologist and a pysiotherapist. I really do feel for you and the pain you go through everyday - its very hard when others can't pysically see what you are suffering. I am currently on Methadone for the pain and many other medications for many other symptoms. I hope that they soon will be able to provide me with alternative medication that doesnt control my life as much as the Methadone does right now. After seeing my Pysiotherapist for quite some time, I now do Pilates which has really helped, and I also enjoy swimming. I love to exercise and use to go to the Gym regularly until I was told that was a No-No! I find that these ease up my joints and have definately began to help. I found being tired quite hard to deal with in the beginning as I just wanted to sleep all day! I do find that getting a good amount of sleep at night time helps, which of course is quite obvious, and sometimes when I do feel a little tired I have a nap. I would also recommend eating the right foods; high in protein and good carbohydrates which give you energy. Sometimes in the morning I have just one energy drink which just helps wake me up for the day. I do also find that swimming is very rejuvianating and can make me feel refreshed which gives me that boost I need. Although sometimes I do give in and sleep, I do always try to do something after like swimming or even pilates at home. HMS can cause a person to produce more adrenaline than say someone who doesnt suffer with HMS so I advise to try and get into a regular routine - try and get rid of that extra energy, I have found that keeping a balanced routine including food and exercie, has helped me with the tiredness. I hope this may help a little. I'd love to hear from anyone else who suffers with HMS who may have some more help or advice!