Hyper mobility syndrome

by C

My bad back started when I was 15. But then it only lasted for two months. It was my birthday when I started experiencing awful pain in my back. My parents said it would pass within the next couple of weeks. I probably just did a wrong movement they said.

Weeks went by, and I became more sloppy in what I was doing. I did do sports at the time, I didn't stop. It was obligatory to do sports in our school. By the time October arrived, I couldn't get out of my chair, with excessive pain. But most of the bad pain was at night. I didn't really feel it in the morning, because I was laying flat when I was sleeping.

Though the back didn't improve, I went to see my local GP. She examined me, and referred me to a osteoporotic. There they did all kinds of examinations on me. I was told to get an MRI scan.

I ended up getting one, the results would come back a week later. All that waiting was bad, so after the MRI scan after two days, I couldn't move anymore, despite all the painkillers I was taking. It stopped working for some reason.

So I went back to the doctor, because I needed someone to help aid me in walking. The doctor put me immediately on the IV line with cortisones flowing into my blood. It helped reduce the intensity of the pain, and I could move more easily, but it didn’t stop completely.

I was on the IV for ten days. After that, I spent two weeks in bed. Not that it helped me much. It just didn't.

The MRI results were bad. I had a slipped disk in the regions L5/L4; L5/S1; (L4/L3; L1/L2 these weren't that bad). I don't know the reason why I had slipped disks.

After the IV line, about a month later I went for physiotherapy. The first session was probably the most painful. Maybe, but still the lady was not friendly at all. Though I must admit the surprise I had in how powerful such a little lady was. Anyways after therapy she immediately ordered another X-ray. Said there was something wrong. She was the one who said I had Scoliosis and hyper mobility syndrome.

Had the x-ray later that week. Got the results the same day. Nothing what they could explain. I started experiencing numbness lack of movement in my arm. By the 4th day, there was this weird feeling. The whole left arm was literally 0 degrees Celsius. I couldn’t move it. Anyone touching my arm, it felt like it was burning, and the whole pain would crawl up the arm, even the slightest movement, or the slightest touch, or even my clothes touching it. No matter how cold my arm was, the touch put my arm on fire. I couldn't put my clothes on.

This was in December. My brother had to help me into my coat, my parents had to help take my shirt and pants of. I was too weak to do anything on my own. We called a 'new' doctor. And he then diagnosed me with severe lordosis, muscle imbalance. The time it would take to heal everything he said would be two years. He said I was still young.

It is now 8 months later. My back still hasn't improved since August. When it all started, I am going to see a new specialist next week, because the physiotherapy I am having works only temporary and it causes concern for him. Like clockwork I wake up every morning at 3am with severe back pain. Same at 5 in the morning and at 1. Cause the pain in my leg, and leg is so bad.

I am 17.5 and I've become rather weak, and no one knows what to do anymore. My parents blame it on the cold, and my bad posture, my doctor says its more then just a bad posture. I have hyper mobility syndrome which people tend to get when their muscles are over flexible and often when there feet are flat on the ground with no curves. I cannot stand longer then 5 minutes still, I cannot sit down without a cushion.

All I will say is do the exercises and things will improve a bit better, and never ever slouch its one of the reasons why I have this. Though the back pain I have is inherited from my mum's family. Don’t ever give up hope.

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Feb 27, 2010
Thank You
by: Celine

Thank you Claire for that piece of advice. I never knew what was the cause of such extreme pain and it became so depressing... Now at least I have a name that I can give my doctors...

This has been useful. I still get this pain a lot about 3 to 4 times a year.... hope you are okay.

Feb 26, 2010
Have you heard of RSD?
by: Claire

Hi I'm new to this, I came across this website by accident, I was reading your story and a couple of things you were describing and I quote "The whole left arm was literally 0 degrees Celsius. I couldn't move it. Anyone touching my arm, it felt like it was burning, and the whole pain would crawl up the arm, even the slightest movement, or the slightest touch, or even my clothes touching it. No matter how cold my arm was, the touch put my arm on fire. I couldn’t put my clothes on"

Have you heard of a condition Called Reflex Sympathetic Dystrophy? The symptons you are describing where your arm is burning and you can't bare to have anything touching the skin sounds like RSD. I was diagnosed with RSD when i was 14 I'm now 23 and have just recently been diagnosed with Hypermobility syndrome. Here is the RSD website for more information if you would like to read more http://www.medicinenet.com/reflex_sympathetic_dystrophy_syndrome/article.htm

hope it helps you in some way,

Oct 10, 2009
hyper mobilty syndrom
by: ciara johannesen

you have my deepest sympathies, i am going through alot of pain on my back and its painful when i sit down for about 5 mins or stand for as long. I was told about 1 year ago i had HMS and i thought nothing of it but now am in much pain, i hoping it gets better. I was just going through the phase of aw its probley just the way i was lying when i was sleeping or something but ive read your story and ive realised its really serious.
thanks for sharing your story what wonderful help its gave me. get better soon love.x

Jul 12, 2009
That's bad
by: justin

Your condition is worse than mine. I have knee problems I am currently trying some ayurvedic therapy. but I don't think it is working... Hope you get well soon.

Dec 07, 2008
Hyper mobility syndrome
by: Anonymous

Hi -
Its me again, the one that wrote it. Thought i might update you guys. It hasn't got better in recent months, in fact it got quite bad, that i couldn't move my neck for a while, and my left arm. I have more MRI's coming up soon, and getting medication to reduce the inflammation. thanks for the encouragement.

Dec 05, 2008
Get better.
by: Tim

I hope you find some relief. Thanks for sharing your story.

Apr 24, 2008
You have my deepest sympathies
by: Steve


Thanks for sharing - and you have my deepest sympathies as what you are going through is far, far worse than I have had to live with.

Good luck, and I hope your back improves.

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