After diagnosis of Ehlers-Danlos Syndrome most people are pointed in the direction of a Physiotherapist, who will become one of the main health-care professionals involved in the treatment of the disease. I was diagnosed 100 miles away from where I live and although the Rheumatologist I saw has a team of specialist Physios and Occupational Therapists well versed in treating EDS/HMS it obviously wasn’t feasible for me to see them on a regular basis. So I was referred to my local general Physiotherapy Department.
I asked to see the head Physio, who I knew had one other patient with EDS. My request was ignored, and I was placed in the care of a newly qualified Physio who’d never heard of EDS or hypermobility syndrome. Super! She did the standard muscle strength assessment on me, and was mortified when the neck strength test sent my neck into a horrendous spasm which lasted 4 days. I also showed her my bendy joints while she just looked on in horrified amazement. I think I scared the poor young girl half to death. Any exercises were also hampered by the fact that I also have M.E., a disease in which exercise is “the enemy” and should be avoided at all costs. The words rock and hard place spring to mind.
Three months of weekly physio later it was obvious we were getting nowhere and I was getting increasingly frustrated and despondent. I’d heard about a Rheumatology Physio at a hospital in my nearest city, Carlisle, who worked with several EDS patients and asked my GP if I could be transferred to her. She’s called Fran Armstrong and works at the Cumberland Infirmary. Here I was offered hydrotherapy which is great non-weight baring exercise for EDS, though sadly I couldn’t do this as the effort involved made my M.E. worse, plus lots of core strengthening work using extremely gentle Pilates based exercises.
Fran is very aware I also have M.E. and the impact this will have on my attempting any exercise. She’s a lovely person who is doing her best to help in extremely difficult circumstances and I’m so grateful for that. We do both get frustrated, though, that exercises we know will help my EDS exacerbate my M.E. It’s reassuring for me to know, however, that I have someone I can call on for advice. For example, at the beginning of April I realised that, after taking my dog for a walk in a rutted farmer’s field, I’d ‘done something’ to the sacrum area (ie. the base) of my spine. The burning, aching, stinging pain went from my sacrum, over the Iliac crest of my hipbone, and radiated down the outside of my hip and thigh to my knee. Ouch, ouch! Luckily I had a physio appointment coming up, and Fran was able to examine me and determine that nothing seemed out of alignment. She thought, therefore, that I’d torn the Sacroiliac ligaments which hold the sacrum at the base of the spine to the pelvis, and told me I had to have 2 weeks of bed-rest, followed by several weeks of very short walks on level ground. Three weeks on and my back is still flippin’ killing me 😦
Physio exercises for EDS aren’t something you do for a couple of months and then all is well. It’s an ongoing treatment which has to be constantly monitored, re-assessed and tailored depending on what is going on with the joints at any one time. A good relationship with your Physiotherapist is, therefore, a big, big, deal and I know I’m lucky that mine is lovely and acts in partnership with me, knowing I’m an expert patient and know more about my body than anyone else – what will help it, what will hinder it, what I can do and what I can’t.
Here is a list of my current 30 minute exercise regime. I’m supposed to do it daily, but can currently only manage about 3 times per week:
1. Scapula setting exercise
Lie on your stomach, head down and straight (resting on a small pillow if this is uncomfortable), arms straight and slightly away from your sides. Lift both shoulder-blades off the floor by 30degrees only. Hold for 5 seconds. Repeat 3 times.
2. Core strengthening exercises
Lie on your back, knees bent. Contract navel towards spine and hold, whilst at the same time contract pelvic floor muscles and hold (this aligns the spine in a neutral position and is the starting point for ALL exercises). Then pull your whole spine down towards the floor. Hold for 10 seconds. Repeat 3 times.
Start in the same position, knees bent, navel and pelvic floor muscles contracted. Drop one knee very slowly and in a controlled manner by 30 degrees. Hold for 10 seconds. Repeat 3 times with both knees.
Lie on your side, knees bent at a 45degree angle, one arm straight and under your head. Contract navel and pelvic floor muscles. Extend the other arm off the floor and out at the front of your body, and move up towards your head. Repeat 10 times with both arms.
Lie on your tummy (I have to use a pillow under my stomach due to the fact I have an exaggerated curve in my spine which is painful in this position). Head down and spine straight. Arms straight out on the floor above your head. Contract navel and pelvic floor muscles. Clench your buttocks, hold for 10 and repeat 3 times.
In the same position, lift one leg off the floor by a few inches. Hold for 10 and repeat three times with each leg.
Yes, I know stretching is considered a bad thing in EDS, but some parts of my body, particularly my neck, are so stiff and rigid it’s really limiting my ability to turn my head (not good when driving the car!) so we thought we’d give stretching a go – if it makes things worse, I’ll stop.
Sit on the floor in the lotus position, ie. legs crossed. Contract navel and pelvic floor muscles. Place ear to shoulder, hold for 5, repeat 3 times on each side.
In the same position, turn the head to one side as if looking behind you. Hold for 5, repeat 3 times on each side.
In the same position, pull chin down and inwards, feeling the stretch in the back of the neck muscle. Hold for 5, repeat 3 times.
Stand up. Contract navel and pelvic floor muscles. Slide one arm down the side of your body, feeling the stretch in the opposite side of the torso. Hold for 5, repeat 3 times on each side.