Pain with hypermobility syndrome

[Sore1234]

I’ve been told from my early teens this is what I have. Been told at first it was simple growing pains and I knew this was not the case. Was eventually sent for ultrasound then few years later an X-ray, physio sessions etc.

I went private this week as the pain is getting unbearable, was told the same things as before, hypermobility, I’ve now been referred to a specialist physiotherapist (who’s knows how long with Covid before that can start) I cannot sleep. I toss and turn, cry, shoulders click, discomfort in my hips. I’m in pain all day every day, needless to say I’m in my very early 20’s and I do not want to be living with this pain for the rest of my life

It’s mentally draining me and I know it affects the ones I’m close with too which hurts me even more. Your family and partner do not wish to hear on a daily occurrence;

“I’m sore “ , “I’m tired”, “my shoulders aching” the list goes on.

I know hypermobility is so common and doesn’t always come with pain side affects but I am in agony every day of my life, I need to know if there’s people in the same boat as me and

[Dizzytwo Moderator]

Hi there and welcome to our group. You did not say if you suffer with fibromyalgia? But if you do it makes no difference only we are fibro suport group. I am wondering if you may get more suport from a group that actually sufferes with your kind of health issue.Maybe this group could offer you more advice

healthunlocked.com/edsuk

I am sorry your struggling at such a young age. I hope you find something to help ease your pain soon xx

Momo

[Hidden]

HiI’ve always been hyper mobile but didn’t know it until about 20 years ago. I’m now 60. I certainly didn’t have as much pain as you are describing.

In 2008 I was diagnosed with Fibromyalgia. It’s hard to know where one condition ends and the other begins in causing pain but the things I do to relieve the pain are much the same.

1. Remember prevention is better than cure. Avoid positions and activities that over extend the normal range of movement of your joints. eg watching TV with your legs curled up around you. Sit relaxed but in alignment.

2. If your pain-site feels hot to touch, use an ice pack to reduce the inflammation. If it isn’t heated wheat bags/ covered hot water bottles are soothing.

3. Fidget! (don’t laugh😁). Being still causes stiffness but I know when it hurts it’s all you want to do.

4. Always try to keep warm. Constricted muscles impact tendons and ligaments when they are cold.

5. Undeniably the most important thing is to Pace. By that I mean give yourself permission to rest in between activities.

6. Pilates for Alignment helps me but start very gently. I paid a fully qualified instructor to plan a routine for me to do at home without the need to attend classes. It was the best £25 I’ve ever spent on fitness. I do my routine daily and it relieves pain in my knee when it flares every time.....that’s when I haven’t been doing my exercises regularly usually.

7. Find a good Osteopath who understands Hypermobility. Just ask them. You need someone who understands soft tissue damage.

8. Don’t be afraid to take paracetamol if doctor advises it especially at night. Sleep is so important. Use pillows to support your body- get creative.

You seem to be in a flare up at the moment but integrating the above should bring you to a better place.

Be kind to yourself.

Best wishes, Sonie x