Muscles slow to relax after sustained contraction and failed trigger point release

[ana_qi]

I have a challenging problem and I would really appreciate your thoughts on it.

I am a 40 year old female with Ehlers Danlos Syndrome - Hypermobility Type. I have been unwell since the age of 15 but I was only diagnosed with EDS 18 months ago. I have mobility problems and I suffer daily pain. I have hypermobile ankles, knees, hips, wrists, elbows, shoulders, neck, and an increased lordosis of my lumbar region. I also have Postural Orthostatic Tachycardia Syndrome and seronegative Sjogren's Syndrome.

In the past few years I have suffered with muscle spasms. When I hold something tightly my muscles do not relax when I let it go. I was told this was myotonia but EMG and nerve conduction tests were normal so there are no obvious electrical problems. This interferes with my daily life and is preventing me from exercising and doing EDS rehab.

I tried pilates but one pose caused a muscle spasm in my neck that left me in severe pain in the back of my head for three months until a doctor prescribed a low dose diazepam.

A local physio tried to do trigger point release on a knot in my shoulder but it did not release and it caused a muscle contraction that took several minutes to relax. The physio did not know why this happened and discontinued treatment.

The physio instead gave me simple isometric exercises to do. Laying on my back on my bed she placed a towel under my knee and told me to tense the muscle and gently press down. I did this five times without difficulty or pain. When I stopped she placed her hand on my leg and said my muscle was still very tight even though I thought I felt relaxed. It took several minutes to properly relax despite me being comfortable and mentally relaxed.

This causes many problems with daily activities, writing, controlling my mobility scooter and chopping vegetables leaves my hands feeling stiff and sore. Attempting to walk or use an exercise bike causes sudden pain as my knee stiffens up around the knee cap. Even my elbow gets stuck if I try to whip cream or beat cake mix.

This muscle tension has plagued me for 25 years. When my pain flares up it feel like every muscle in my body is tense, even though my mind is calm and I am not anxious or stressed. This also causes a lot of pain that is not reduced by pain killers.

These problems prevent me from doing daily activites, physio and exercise. Visual or progressive relaxation exercises do not help. Diazepam does help, but it is not a long term solution.

No-one knows what is causing my muscles to stay tense and I would like to know if there is anything I can do about it. My doctors are keen for me to exercise to strengthen my muscles to support my lax ligaments but this is not possible when they are so tight. If I try and push through the pain it only makes the problem worse. I really want to improve my health and mobility but this is one stumbling block I can't seem to get over.

This is a video of my hand after making a tight fist for around 15 seconds. It is a struggle to straighten my fingers again and even when I can move them my hand feels stiff and sore.




Your thoughts are very much appreciated.

Thank you!

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[Kate Greenaway]

Hi There,
To give you a brief picture of my experience - I have 30 years experience in physic- trained graduated in Australia I have specialised over 20 years in complex chronic pain syndromes and the last 15 years studying and working with the body's connective tissue(CT). EDS as you know is an autoimmune disorder affecting the CT if there is thickening, tension or old holding patterns in your CT there will be problems in moving in a naturally free smooth gentle way - all your organ systems will be affected too as we are all CT from inside our cells to muscles, fascia, organs - even our blood and lymph fluid is medically recognised as fluid CT. In my experience with my body and hundreds of clients - It is supra sensitive tissue that hardens if their is any physical or sustained emotional strain. This causes compression of the affected organs and dysfunction/pain in the area affected. I hope this makes sense.
The way forward for you maybe to slowly reconnect to the natural way of moving gently - by a series of small movements that incorporate rotation and sliding gliding - I have developed these movements and exercises and use them myself a lot and present around communities in Northern NSW, Sydney and Melbourne. CT loves gentle rhythmic movements that have a sliding gliding component- as in its natural state it is fluid and flexible and allows smooth gentle pain free movements. How does this sound to you ? Warm Regards Kate Greenaway

[ana_qi]

Thank you for your reply, Kate.

Firstly, may I correct you. Ehlers Danlos Syndrome is not an autoimmune condition, it is a heritable disorder of connective tissue.

Secondly, I'm not sure what you mean about sliding and gliding. Any movement that involves sustained muscle control, even gentle isometric exercise, leads to prolonged muscle contractions. I am very severely affected, I cannot stand unaided, I struggle to walk more than a few metres and even gentle tai chi exercises flare up my symptoms to the point where I can no longer care for myself.