Progressing joint pain-- no diagnosis

My way in was through one GP who thought I might have rheumatoid arthritis at first, so he sent me to a rheumatologist. One quick assessment from her and she told me about hypermobility (which is pretty much the opposite of arthritis, but still causes great pain!). An astonishing majority of GPs, physiotherapists and gym instructors don't know about it. This is what you must be wary of. Get a diagnosis from a rheumatologist, insist to see one, but after that it's all about pain management, and prevention, avoiding stuff that hurts.

With time, you will learn what that is. Being hypermobile means that very very often you'll be able to do a lot of stuff, and pay the consequences a couple of days later. So, with practice, comes awareness, and prevention

You'll be fine, my daughter is 9 and is hypermobile but because I know about this, she is aware of it and is just a little extra careful with efforts others feel they want to push. They will tell you to push your limits too, because they have no idea! For example, whereas Pilates is apparently helpful, though not all exercises, yoga really really isn't! 

So, my advice would be: do your own research, on the web (always on reliable medical sources), but more than anything else, find out what you can and cannot do, and set your life accordingly. If others don't take your symptoms seriously, it's because they don't understand how being extra flexible can cause damage and pain. When a bone in my foot had dislocated and moved to the bottom of my foot because I attempted to take up running, it was treated as a corn (!) until the aformentioned rheumatologist saw it. Then I understood what it means to look after your own self. Don't waste precious energy explaining it to others. Get a diagnosis, but after that, be the judge of your own ability. 

Eat little because you won't be able to do a lot of exercising to lose the weight, and the lighter you are the less it will weigh on your joints.

Oh, and get some good painkillers, my recent fave is a higher dosage Ibuprofen cream.

Finally, the association with anxiety and depression is getting better know. I get regular tachicardia and if you think about it it makes sense, if you are constantly scared of hurting yourself it's difficult to keep that at bay. So make sure to be aware of that and speak to your GP and any symptoms you might have of depression and anxiety. They may or may not understand the connection with hypermobility, but there are helpful pills you can take, they will take some of the discomfort away.

Hope this helps. Look after yourself

I'm pretty sure that you have Hypermobility syndrome, as your story is almost identical to mine, and I have Hypermobility. It's shocking to me that your not receiving any support, but nothing can be done about this condition it's just a matter of managing the pain with ibuprofen tablets & ibuprofen gel, hot baths and hot water bottles on the painful joint area.

Hello ,

I agree with hinny , the best way to get diagnosed is through a rheumatologist.

My daughter has had hypermobility syndrome but was only diagnosed this year at the age of 17, after her shoulder came out of joint, it has now come out of joint 5 times as well as her ribs , knees, elbows, wrists , fingers etc.

The best way forward is to find a good physiotherapist who should give you exercises to help strengthen the muscles around the joints. It will never go away but hopefully with some good physio treatment it will become more mangeable.Once you are diagnosed you can also get the use of computers and any other aids in lessons. 

The HMSA website is also very useful. 

Hope this helps.