This photo is a common occurance for us, we spend alot of our time in the doctors, at a&e, physio and any other clinical and consultants that pop up, all down to Oliver and his Hypermobility Syndrome.
💙

Basically his ligaments are too stretchy and loose to support his joints so it causes pain and fatigue as his muscles are having to work harder. It also means his perception isnt great and falls over and injures himself regularly. He is more prone to reoccurring injuries like sprains, strains, dislocations and soft tissue damage.
💙

People will never truly understand something until it happens to them.

Oliver has been in and out of a&e since he could walk at about 10 months old, from falling out the back door, to falling up and down stairs and so many more. I have always put this down to clumsiness as it runs in the family I now know it’s part of being hyper mobile….
💙

He has also always complained of sore feet, ankles, wrists and fingers but again I put it down to him being a child and not wanting to write or walk or do whatever we were doing and just loving a good whinge. I now know this is down to his hypermobility syndrome.
💙


His symptoms started to increase after he broke his arm in 2 places when he was 8 years old. From this point he gradually got in more and more pain and had to stop his activities starting with Street Dance, Gymnastics, then football and finally swimming. It was heartbreaking to see my active boy slowly going downhill and we had no idea why. We were in and out if the doctors and we were then referred to physio. He got special insoles for his shoes and because the pain was so bad we were referred to The Childrens Rheumatology in Newcastle. Thankfully all the tests came back fine but we were still non the wiser. We were then referred to another consultant in paediatric orthopedics and this was a waiting game. Again he didnt know why Oliver was in So much pain and put it down to a low pain threshold and that the pain wasnt there!!! He wanted to discharge us after a few consultations. I wasnt happy and refused as Oliver was now in Year 6 and was constantly absent and not being able to join on with his classmates. So he agreed to see us in a years time. Over the next year he missed nearly 4 months of school in his 1st year at secondary and it wasnt right. So we went back in the summer and he finally diagnosed him with Hypermobility Syndrome (through research and the help of casualty 😉 I had already diagnosed him with this disability but had to wait for a doctor to figure it out and that was frustrating…)
💙

At last we had a diagnosis and now I thought we can move forward and start helping my son but it wasnt that simple as the pain with JHS is so variable from person to person. Oliver can’t walk to school, he is in pain all day and struggles to get about and write. He cant do PE or join in with activities, he really struggles. We are in the Doctors pretty much weekly and probably at a&e every 6-8 weeks or so with a new/recurring injury. It’s so hard as I cant help him, I just wish as his mum I could take his pain away.
💙

Oliver has been on constant painkillers for years, it started with Paracetamol and naproxen several times a day, these didnt work or touch the pain and caused stomach pain, so he then put prescribed lanzopronol to help with this. The pain continued to get prescribed Gabapentin but this caused horrible moods so I took him off these straight away. I didnt really want stronger pain meds but it was getting worse and worse and our referral for Pain Management is still going through nearly 3 months on, so our GP prescribed Nortriptylin these are taking the edge off but we have had to up the dose recently due to increased pain. I just want him to go to pain management as this syndrome, pain , injuries are not going to go away and I just want him to be able to mentally and physically be able to deal with the pain, as its getting him so down and I worry about him so much.
💙

I just want my happy, carefree, active, funny boy back, the one that jumps about acts like an idiot and makes us laugh.
💙

This syndrome, this disability, this pain is not understood because it can’t be seen, it can’t be tested for, the pain is variable person to person and no one fully understands how it affects the individual. I just know my son is in constant excruciating pain with his joints, has recurrent injuries and this is causing him problems physically, mentally and emotionally and I just wish I could take it all away. xxx💙xxx

The website for hypermobility association has been a godsend for me and ig you are ever worried definatrly have a look at that. http://www.hypermobility.org

All o can say for anyone worried their child or yourself may he suffering from Joint Hypermobility Syndrome then keep going to doctors dont give up eventually you will get the diagnosis you need and the help you deserve as on average it takes up to 10 years gk gwg a diagnosis. So don’t be afraid to be pushy and trust your instincts as this fairly unknown disability is hard, is painful, is debilitating. If you have any worries, concerns or questions please message me xxx

Published by sarbearandthecubs

I am a single mum with 2 gorgeous children, Oliver who is 11 and Kayley-Rose who is 1. Parenting is hard for anyone but even more so when you are on your own and suffer from mental health issues. So I have decided to write about my life, experiences and feelings while bringing up two amazing children. It's fine to say being a mum is hard and it's all right to admit that it can be a struggle but oh so rewarding. Our little home is full of fun, laughter and the odd tantrum or two and they are mostly from me.....lol So I hope you enjoy what I have to say, and love our mad perfectly imperfect family. Happy Reading. xxx

Leave a comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: