Easing pain in Hypermobility Syndrome?

Question

I have the above condition and my joints are sore...I take so much medication that I rattle. Does anyone else have this condition and can help. Also my pain receptors are unable to switch off to parts of my body, they cause pain spasm that hit like lightening ( not funny) Anyone out there have this? //(*_*)\\

I forgot to add this is a hereditory condition!

Answer 1

Regarding your pain medications, you should contact your Rheumatologist. He is the better person to decide what's best for you. However there are some exercises and life style modification methods that should help you. Some of them are,

1) Daily stretches are of paramount importance. The thoracic spine is the first place to stiffen in adolescents and 90° trunk rotation should be encouraged. To ensure 90° rotation to both sides, try sitting in a dining chair and twisting around to hold the back of the chair, so that your shoulders are at right angles to your pelvis. Repeat to the opposite direction. Do this once a day.

2) It is important that daily sessions of muscle relaxation should also occur. If you feel that you might need help with relaxing, ask your physiotherapist to teach you some of the techniques.

3)Ensure that you breathe with your diaphragm. It is important that you oxygenate your body maximally to keep the tissues healthy and energetic. The diaphragm is the most energy efficient muscle of respiration.

4) Isometric / static strengthening exercises should be done to stabilise the joints.

5) Balance education and proprioceptive improvement exercises should be encouraged too.

6)There may be a need to support the flat foot with insoles and a referral to a podiatrist or physiotherapist may be indicated.

7) Abdominal muscle strengthening exercises are important too. Prior to any movement of the upper or lower limbs, the trunk is stabilised by the automatic contraction of the abdominal muscles. When the abdominals are weak, the trunk, which includes the back, is less stable, limb movements are less co-ordinated and back injury more likely. Practise pulling in the low abdominal muscles and pelvic floor as you continue to breath normally and as you perform everyday activities.

8) Lying for 5 minutes daily, on your side or back, with your legs curled up, helps the discs imbibe water, thereby improving their hydration and shock absorbing properties.

9)Good hydration of body tissues is an essential factor in protection, repair and maintenance. Drinking plenty, (preferably water) before and after sport, is vital for healthy tissues.

10)Participating in racket sport has been found to significantly increase upper trunk strength and reduce the incidence of neck and shoulder pain.

11) Make sure you rest your joints each day. This does not mean that you must lie down and sleep but ensure you avoid fixed positions. FIDGET!! Only stay at one task or in any one position for a maximum of half an hour.

12) Have a daily programme of management; pact your activities, avoid repetitive tasks and fixed positions, keep your joints moving without overstretching, try taking up Yoga or Pilates exercise.

13)Change your way of life - the way you move; when to exercise; continually correct your posture; take rest times

14) Become a problem solver by managing daily tasks to suit your body. Look at ways of changing your environment so that, for example, work surfaces are at the correct height, avoid continually bending. Provide cushioning between your body and the world with softening aids, adaptations of your environment. These could include self help tchniques such as wedge cushions, strapping to prevent over movement of vulnerable joints, muscle and nerve mobilising exercises, massage and treatment of tender trigger points.

Answer 2

I don't have this particular disorder, but do have a little bit of a medical background. So here are my particular suggestions...

If your pain is from an injury then you should follow the rule: RICE. Rest the injured joint, use Ice around the joint to reduce any pain and/or swelling, ‘Compress’ the injury (using an elastic bandage or something similar) and Elevate the injured joint (e.g. if you’ve sprained your ankle then put your foot up!)

If your pain is not from an injury then heat is very useful for easing pain - try an electric blanket, a hot water bottle wrapped in a towel or a warm bath. The sachet hand warmers that you can buy to slip inside your gloves on cold days are also very good!

If heat isn’t enough, then paracetamol may help. Many people with Hypermobility Syndrome find that paracetamol is better than Ibuprofen or aspirin. However, all painkillers can have nasty side effects if taken too often and so you should only take them when absolutely necessary.

Pain can actually feel worse if you feel miserable or if you are bored and brooding on your pain. You will often feel better if you can try to take your mind off the pain by doing something you really enjoy.


Kimberly, RRT

Answer 3

Howdi! I also have Elhers Danlos / Hypermotility Joint Disorder-

My experince may not be typical, please don't think I am pushing a 'do it yourself, minimize your pain' line of bull***t.

I have been a chronic pain paitent for 10+ years, on high dose narcotics, with pain recpetors (pain gates) firing randomly.

Over the past year I have been able to reduce and eliminate 90% of my pain meds.

This is what helped me. It's not fun, and it's not esy and it may do nothing for you.

I started weight training, at a very low level. Yes, it hurt. The goal was to stregnthen and 'muscle bind' the small muscles around my joints without tearing them. I befriended one of the BIG guys at the gym- not one of the personal trainers- and had him help me with proper body mechanics.

I also started using suppliments to give my joints and connective tissue building blocks to rebuild. Jarrow brand 'bone up' seems to be the most effective one, and I can't explain why.

I also started acupuncture for pain control.

I changed meds from narcotics to Tramadol, and began cutting down tramadol as well.

Yes I still hurt. But no where near what I used to, and now I am off pain meds except for random bad days. I have learned to protect my joints with muscle. I feel better, and I kick *** now in the gym.

I also learned when to expect joint pain, and learned to tape some of my joints for outer support- my wrists for example.

Although I am not a big believer in 'diets' I know that I feel worse when I eat high carbs and high sugar, and better when I eat high protien- but that's me.

Google Elhers-Danlos and get connected with the support networks as well.

Don't dispair, yes this is genetic, yes it is chronic, yes it sucks.
We are each individuals and I don't want to give you false hope, but I had no hope, and now I do.

Peace sweety.

Answer 4

three members of my family have this horrid condition,we saw prof graham at the rheumatology clinic in london several years ago,no help was offered,but a diagnosis meant disability allowance and inc benefit was given to them.i asked to be referred there and my gp got us in.it seems we are all hypermobile in our family,but only three have the syndrome,which makes them ill and,like you in a lot of pain.we use heat a lot,warm baths with relaxants in,lavender oil,and rose oil to lift the spirits.rest and swat up on the condition,have a leaflet handy for people who ask hyper-what???,no-one seems to have heard of it.my daughter,22, rests before any occasion that takes lots of energy,my son 20,hurtles through life and pays dearly for it later.my husband takes warm baths,and uses an electric heat pad(£15 argos)look up the hms association on the web for your area,and get in touch with other sufferers,there will be many about,and it's good not to feel alone.take pain killers when neccessary,and recognise limitations imposed by this are just as valid as more obvious illnesses,which get far more sympathy.i hope this helps in some way,not a cure,but support.xxjill

Answer 5

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