Bend a little more that way . . ! (Hypermobility Syndrome)

Member Name: kiss_me2070

Product:	Hypermobility Syndrome
Date:	24/10/08 (629 review reads)
Rating:

Advantages: You are more bendy than most people!

Disadvantages: Painful, Dis-locating joints, Tired, Dis-comfort

***WHAT IS HYPER-MOBILITY?***
Hypermobility describes joints that stretch further than normal. For example some Hyper-mobile people can bend their thumbs backwards to their wrists, bend their knee joints backwards, or put their leg behind their head. It can effect a single joint or multiple joints throughout the body.

The condition tends to run in families, suggesting that there may be a genetic basis for at least some forms of hypermobility. The term double jointed is often used to describe hypermobility, however the name is a misnomer and is not to be taken literally, as an individual with hypermobility in a joint does not actually have two separate joints where others would have just the one.

Some people have hypermobility with no other symptoms or medical conditions. However, people with hypermobility syndrome may experience many difficulties. For example, their joints may be easily injured, be more prone to complete dislocation due to the weakly stabilized joint and they may develop problems from muscle overuse (as muscles must work harder to compensate for the excessive weakness in the ligaments that support the joints).

***CAUSES***
Hypermobility generally results from one or more of the following:
* Misaligned joints
* Abnormally shaped ends of one or more bones at a joint.
* This can also run in families which suggests there may be a genetic basis for some forms of Hyper mobility (although no-one in my family has ever been diagnosed with this!)
* It has also been associated with chronic fatigue syndrome and fibromyalgia.

***SYMPTOMS***
Symptoms can include:
A dull but intense pain around the knee and ankle joints and also on the soles of the feet.
(I used to experience pain around my ankle joints when I was at work but never put it down to anything as I was on my feet all day)

***GETTING DIAGNOSED - MY EXPERIENCE***
Ever since I was younger I noticed me elbows bent a bit funny and a bit further than normal, but I didn't think anything of it, I just thought I was bendy!
I'm now 23 yrs old and I went to pick something up from the shop floor which was quite heavy 9I was using my manual handling training), so I was lifting correctly!

Soon after that I started to get a clicking/cracking noise in my back and it became quite uncomfortable & the noise of my back cracking was quite worrying.
About 3-4 weeks later I went to see my GP and she referred me to see a physiotherapist up my local hospital.

I did some exercises with the Physiotherapist so he could determine what was wrong with me and where the problem was.
The problem was indeed in my lower back where I was experiencing the clicking/cracking noises and sensations. He also got me to do a number of things such and bending my thumb towards my wrist and some other exercises which told him I had hyper-mobility!

He applied pressure with his hands to the painful areas to try and ease the pain (or blockages as he said!), I'm not going to lie . . It REALLY HURT!
He printed off some exercises for me to do twice a day and I booked another appointment for the following week.

The following week I saw a different physiotherapist and he got me to do some exercises as well. He could see straight away that I had flexible joints as when I sit down and lean back on my arms you can see that my elbows are very bendy.
He talked about the muscles and joints in the bottom of my back and using a dummy version of the back he showed me where the problem was and what was happening.

He also relived some of the pressure/pain in one of my buttocks and this time it hurt even more. I've never experienced ANY pain like it before and I've had 2 tattoo's done and that hurt!!
After this session I was extremely sore and aching! I'm still having physiotherapy now, and its been 5 weeks now. I have good days and bad days. Sometime I'm in agony with it, and the pain makes me feel very sick.
I was prescribed some pain-killers and anti inflammatory tablets which I have to take twice a day but I have experienced side effects and I have not been able to sleep very well!

I was also given a support belt which I had to wear for 24hrs which admittedly did help my back out and I did experience less pain when I wore it, but because you have to wear it so tight, when I took the belt off I was actually quite sore and my hips were sore and looked slightly swollen from it, this lasted for about 4 days after taking the support belt off!

***CHANGES TO MY PERSONAL LIFE-STYLE***
I changed my job about 5 weeks ago anyway, as I wanted a career change from retail. I have an office job which of course involves sitting down all day. I have to take regular breaks from sitting down.

I used to go running once a week and I have now had to stop this, I had to do sports such as swimming and Pilates. I also haven't been able to do any sit ups for about 2 weeks which came as a huge shock as I try to do at least 100 a week!
I have to do 7 different stretching exercises twice a day, which means getting up earlier to do them and then going to bed slightly later in order to complete them twice a day!

I love clubbing and have always been the first one of the dance-floor and that's where I'll stay for most of the night. The first time I decided to go clubbing after being diagnosed I was in agony! The following morning after my night out, every time I moved it was very uncomfortable and painful.
I am still having physio now which costs me £40 for a half hour session which is pretty expensive if you have to go every week like me. If you get referred by the NHS, like me, you get 5 sessions free, then you have to start paying. Obviously prices may vary!

***MANAGING PAIN***
Hyper-mobility can be very painful to some of your joints, I have experienced very bad pain in the bottom of my back with an unpleasant clicking/cracking sound every now and again which is so loud someone sitting 3 feet away from me can hear it!
Your Nurse/GP may prescribe some pain-killers for you which will more than likely also be an anti-inflammatory!

1) Medications frequently used to reduce pain and inflammation caused by hypermobility include analgesics, anti-inflammatory drugs, and tricyclic antidepressants. Some people with hypermobility may benefit from other medications such as steroid injections or gabapentin, a drug originally used for treating epilepsy.

2) Heat - The application of local heat such as hot water bottles, heat rub creams, etc maybe soothing.

3) Stretch - Performing regular stretches may help to relieve pain. (You physic may give you some stretch exercises to complete every day).

4) Splints/Supports - Splints, Casts, Supports and Belts can be used to help reduce pain for knee's elbows and back pain.

***LIFESTYLE MODIFICATION***
For many people who suffer from Hyper-mobility their lifestyle changes can decrease the severity of symptoms.* If you write a lot, you may find typing easier and less painful.

Avoid over-stretching joints. Just because you may be able to stretch further than other doesn't mean it's a good idea to!
Watch your posture to ensure you are sitting/standing up straight. Weakened ligaments and muscles contribute to poor posture which may result in numerous other medical conditions.

I have also been told to stop doing sports such as running and sit ups. I have been told by my physiotherapist to do sports such as Pilates, Swimming and other sports like Tai Chi!This is always going to be a permanent problem which won't go away. The physiotherapist can try to ease the pain and help as much as they can but that's all they can do!

***KEEPING FIT***
If you are hyper-mobile it can be more difficult keeping fit as there is a greater risk of injury and you may find exercising quite painful.

To improve your fitness you need an exercise programme that addresses all the areas of fitness. The exercises need to be specific to meet your needs. Your exercise programmed should be performed at least 3 times a week. This should also be monitored regularly. A good exercise programme should include the following.

Posture - Good Posture reduces the stress placed on joints, reducing wear and tear. It also improves the available range of movement of joints, which help to maintain normal joint range and muscle length.

Breathing - Physiotherapists and other health professionals use breathing techniques to help reduce pain.

Aerobic Conditioning - Being aerobically trained helps to, regulate hormones and blood sugar levels, improves the endurance capacity of muscles including the heart, aids digestion and improves circulation of oxygen and nutrients to the body.

Muscular Strength, Power Endurance - These exercises help the muscles to provide sustained support for the spine and other joints.

Flexibility (Stretching) - These help to maintain consistent muscle length and maintain joint range.

Positive Attitude & Diet - Staying positive and committed when you are in pain is very difficult. It is advisable to eat a healthy balanced diet. Your diet has a very direct and powerful effect on your health.

REMEMBER - The person who should advise you on what exercises to do and how much should be your physic-therapist. If you are unsure of anything its always best to ask as you don't want to do yourself more injury!

***INFORMATION/GROUPS***
There is plenty of information available online about Hypermobility and there are also groups you can join. I was surprised at how many other people also suffer from this problem, some worse than me! There is a special group for Hyper-mobility which is www.hypermobility.org

***FINAL WORD***
Hyper-mobility can be very painful and it can get you down sometimes. Although people may think its pretty wicked to see how far you can bend your joints, don't risk showing them as you may be doing more damage to your joints than you think.

Stick to your exercise programme your Physio gives you and try to keep committed and think positive.
I'm not finding coping with this very easy as I can get comfortable sitting on the bus or when I'm on the train. I am constantly moving around every 5/10mins trying to get comfortable, people must think I'm a right fidget!

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I had a photo-shoot a few weeks ago now and I never realised until I looked at the pictures that you can see how flexible my joints are. You can see how much my elbows bend and it doesn't look particularly pleasant!

Many Thanks for Reading I appreciate all your ratings and comments.
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I had my last physio sessions last week (this was the last of the free sessions on the nhs, so it was my 5th session).

The physio said he could book me in for more physio sessions but he thought it may be a good idea the wear the support belt for a month and see how I get on with it. He said that no doubt in the future, maybe a month or so I may get refferred back to the physio again.

He also told me it was important to wear the belt for a month and do the exercises he gave me every day (first thing in the morning is better), wearing the support belt. He also told me that if I needed to take my prescribed anti-inflammatory/painkillers then do so.

The physio also mentioned it was important to do the exercises to strengthen the muscles around my pelvis as in the future when/if I decide to have children this may cause problems.
The Physio said although the pain may go away for a while and may feel like its got a lot better, the problem will still always be there and won't ever go away as its a permanent problem.


(Review also on ciao)

Summary: Bendy and very flexible joints such as putting your leg behind you head.