Hypermobility confusion

[PhotoGirl20]

5 years ago I was told that I had hypermobility which was why I had so much pain in my knees when I walked sometimes. I was happy with this diagnosis because it made sense to me as I am fairly flexible. But throughout the years I've developed more pain such as back, hips, shoulders and fingers. So I've kept going back and asking for help with pain but they did nothing for me. Then one time I go back about everything and sent to a physiotherapist and was told that there wasn't anything wrong with me and thati have low core so I just need exercise. This hurt a lot as it made me think I was living a lie for 4 years by saying I had hypermobility. It's not like I don't do exercise at all as I would always do sport and I had a paper round on weekdays where I did 3km in a hour and pushed a paper kart around or carried the bag. I always walk to college whi h is only 10 to 15 min walk away. I use to be a swimmer and since I stopped I got all these pains gradually which is why they thi k I need exercise. I think this isn't true though because why isn't my younger brother in pain too from stopping, why doesn't someone else who doesn't do as much exercise as me not hurting as much as I am. I can't go back to swimming because my left shoulder plays up. When I do front crawl I am brought to tears after a little whole because its like my arm is going in and out of place as I do the stroke and cracks so much. But it's fine because I have low core so I just need exercise to fix everything that's wrong with me. It's frustrating as I don't know what's wrong and I don't feel like I can talk to a doctor as I think they take this seriously.

I get numbness and tingly sensation in my right arm sometiems. Sometimes it's so bad it's like hitting my funny bone but the pain carry on for ages. My fingers cramp and get stiff but it's all put down to repetative motion. Ii do everything with both hands, type with both hands, I pulled my cart( when I had my paper round) by swapping arms every now and then. I don't see how that's all they have to say when most people don't get like this.

I'm sorry for the rant as I could go on forever. I'm just so confused as to what's going on with me. I want to fight for the diagnosis but how can I when the doctors have gone against each others opinions.

BTW I'm only 20 and I feel like I have the bones of an 80 year old

Any advice would be nice

[DISC]

Sadly hypermobility is a responsive condition, yes it hurts while you do stuff too but it is far worse hours or even days afterwards. It might be worth getting checked for EDS as this is linked to hypermobility. Knowing your limits, using supports, pain management, heat pads etc helps as does getting a pain management referral to talk over things with a pain psychologist. It does hurt when medical people brush off what you have but they dont live with it so dont lose heart. Keep active as it is worse to do less and you need to keep tendons and muscles strong to support your flexible joints. Keep protein levels up for this too and vitamin d is good too as is calcium and magnesium. I wish you well.

[PhotoGirl20 in reply to DISC]

Thanks, that's helped. I'll keep your advice in mind as it can be hard to see what is helpful for you.

[cyberbarn]

Unfortunately most health care professionals use what is known as heuristics to diagnose instead of clinical reasoning. They see a patient that has a certain set of symptoms and will diagnose them with the thing that most people with those characteristics have. But people are more complicated than that.

I feel for you. I recently went to the 'hand specialist' physio who said there was 'nothing much wrong with your hands' and dismissed everything. I confronted her and asked what she thought was causing the swelling in my fingers, osteophytes or joint capsule swelling. She said it couldn't be osteophytes because I had good range of movement, but that I wasn't hypermobile. So I asked her to look at the x-rays.

She had to admit that I did indeed have osteophytes (boney growths on the margins of joints caused by osteoarthritis).

Many people with poor core strength don't have these problems. But physios don't see those people so they don't realise that core strength isn't the problem. They did this to my son, accused (there is a huge blame culture running in the NHS) him of being reconditioned. No matter what we said about how active he was (like you) and how the pain started before the fatigue set in, (he expressed pain in his feet and legs before the age of three) they didn't believe us, they just saw the 'de-conditioned' person in front of them, not the whole narrative of his life.

I would suggest going to see your GP with the RCGP toolkit for EDS. GPs can now diagnose hypermobile EDS and that might be the direction you could go in right now, rather than either just putting up with poor advice or doing the rounds of referrals which is unlikely to get you anywhere fast. Look through the toolkit yourself first and make a note of all the symptoms you have rcgp.org.uk/clinical-and-re...

As for swimming, I can't do front crawl because it does really weird things to my toes! I can now only do breast stroke, but I have to be careful with my neck and keep it in line, which makes me look like an olympic swimmer! My son and I got to a hydrotherapy pool once a week and we do stretches and walking in the pool, as well as a few lengths and this helps both of us a lot. My son is about your age.

I hope this helps, and remember, you are not the only one that has been treated this way, there are a lot of us now that have been told there is nothing wrong with us!

[PhotoGirl20 in reply to cyberbarn]

Thanks, this has helped. My bf is very supportive and he's suggested swapping to his sergery seeing as I'm always at his. I'll see if they're any better with me.

It would be nice if they could help so I can have support at uni as well.

[Paws1234]

Hi. Im sorry you have had all this trouble. The other day my doctor told me that using a wheelchair is "getting in to a role". I don't even know what that means! I find a lot of information and humour about chronic pain, on Pinterest. Remember that You are the expert on your condition. All the best☺