L4/5 Spinal Prolapse - with Left leg Sciatica

I have had a minor posterior disc bulge since 2001 when I was in mid-twenties. It used to kill me and the pain was very localised to the disc area on my spine. I was tried on various drugs such as Gabapentin, a new neuropathic drug at this time, which failed to help. Neither did Amitriptilyne. I did increase exercise, but that didn't help so much. The Bowen Technique was helpful for the pain, but it wasn't until I started to have intensive physiotherapy in 2008-11 that my back pain was really 'sorted' and that involved doing a lot of core stability work and retraining, which was hard and painful at the time, but radically improved my pain.  I still had bad times with endometriosis until I had a total hysterectomy aged 39 and was then put on Oestrogen HRT patches which is supposed to stablize hypermobile joints, rather than loosen, as progesterone does.

Fast forward a few more years, and I am now 43 and as of three months ago, I start to get more lower back pain which is in the trunk, rather than in the actual spine. I start a campaign of Pilates and core stability exercises, but in walking, these deep core pelvic floor muscles are no longer firing well, yet I have no idea 'where' they have gone! My back slightly improves over time and then as we get to the end of May I have a major flare up of back pain that is localised to the spine and that old disc. I had by this time ordered a spinal support 'wrap' and wore it only a few times, whilst continuing with a 15 minute daily programme of Pilates/old Physio exercises. A few days later I woke up with pain radiating down my left leg. My first thought was that I had forgotten to do some Piriformis stretches the day before, so it was my fault. (My piriformis is always tight!).

I managed to walk in town, but was aware that my left leg didn't feel quite right, but the pain in my back had eased. I was then going to have my hair cut, and I remember this spot in my gluteals (where the sciatica nerve would pass through) was very painful, and sending radiating pain down my left leg. It was hard having to sit for so long.

The following day was even worse, and without knowing it, I was actually walking on the lateral border of my left ankle, rather than through my left foot as I had unknowingly lost sensation in my foot. By the next day I had severe pain in my tibialis anterior and peroneals on the left leg from walking so strangely the day before. My proprioception had badly let me down. I tried self-treating. I got some stronger anti-inflammatory medication, did some Bowen on my leg. My Osteopath was away and so I received a visit from a GP via NHS111 who wanted me to go to A&E on account of some loss of sensation in my left leg, as well as the radiating pain, which I suspected was entirely related to that old disc prolapse.

The following morning, at just before 9am on 1st June I arrived at A&E. To be honest I thought they would fairly rapidly dismiss me, reassure me it was sciatica and to keep up with moving about and painkillers, but they didn't. By early afternoon I was being assessed by the medical doctors (rather than surgical), following A&E doctor triage. The medical team were a little baffled by the lack of sensation in my medial calf, and at some points on the edge of my left ITB. They then returned and told me I needed a rectal examination, but I knew why this was. Anyone who has problems with lack of bladder and bowel control, and it is immediate concern for a condition called Cauda equina syndrome, which is a rare disorder that usually is a surgical emergency. In patients with cauda equina syndrome, something compresses on the spinal nerve roots. As I could feel the rectal examination, this could eliminate Cauda equina, fortunately. 

A short while later the medical doctor came back to say that they were admitting me and that we were waiting for a bed on the ward, and that I would be admitted for pain management. They had also used my 'Care Plan' document, and it was very clear they were implementing it. From my point of view this was a real 'thumbs up' moment in that the healthcare professionals were trying to do their best for me and my wishes, although I was still surprised they still hadn't sent me home with painkillers. 

By c5pm I reached bed 7 on my ward. I was very impressed with the care shown and treatment in this hospital, it far outstripped other hospitals I have attended (barring one other).

I was later asked to try and walk down the corridor in the ward with a senior registrar. Despite the fact I was limping very bad (more, staggering than walking), he said I was doing really well and that he wanted me to keep mobilizing in this way on a regular basis. The hospital took advice from my pain management consultant at another hospital who created a regime of 20mls of Oramorph every 2 hours. This was fully implemented by the Sunday, and then phased out through Tuesday and I was discharged from hospital on the Wednesday, so it was a five night admission in total. Whilst I was in there I was asked my advice about what  I would want from an inpatient advice book, and helped with this work.

I had a few visitors each day, and although I couldn't walk well, and other patients kept on suggesting I used frames/crutches I had been asked not to. Some people questioned why I was admitted at all, and why for so long, including such a huge increase in opioids. This is a good question, although I did manage to sleep well in the end, something that has been a big problem since I got home. 

I had an MRI when I was in hospital which indeed showed that the nerves exiting from L5 were compressed, so the disc had worsened, nor surprisingly, since the last MRI in 2015. 

The day after I got home from hospital I went to see my osteopath. I told him the whole story and he spent  most of the session addressing my left glutes, ITB and peroneals/tib anterior. He suggested that I only did 'the clam' and 'cat' as exercises at home, in addition to regular 'short walks.' This I followed to the letter. I am still unable to do pelvic tilts, stretching my left piriformis is still too painful, and I still have bad radiating pain. Apparently it could be several weeks before I am walking properly again. I can walk OK for about 20 minutes, and then I can no longer walk through the left foot, without it simply slapping on the ground (like a 'dropped foot'). I am about to go for a follow up Osteopath session. I have also discussed the idea of some one-to-one Pilates sessions again whilst I am in this acute injury phase. 

Another therapist I work with said that he also feels there is a further emotional underlie going on here, and that might have contributed to what I called the final swansong, when the pain had gone down my leg. Just at the moment I feel a complete crock what with all the problems I have in my arms and shoulders due to my bone tumour in the right proximal humerus and also strongly suspected 'Thoracic Outlet Syndrome'. This is really upsetting me as I play the recorder, sometimes quite well, and was offered to do some recitals this month and had to turn them down owing to the pain that the additional practice and rehearsal might cause. All is not well for me just now.

The need for constant rehabilitation - ongoing exercise regimes!

One of the biggest problems with Ehlers-Danlos Syndrome - Hypermobility Type (EDS-HT)/ Joint Hypermobility Syndrome (JHS) is that the management needs to be continuous. It is a life-long condition, meaning that the ligamentous laxity remains (although declines with age), and it is a heritable disorder of connective tissue meaning that the collagens continue to reproduce in a 'faulty' way. This means that the risk of injury is never far away because of often widespread joint instability, pain caused by overworking superficial muscles, and frequently a lack of firing of the deep core stability muscular system. The cycle of a manual therapist (usually a physiotherapist) releasing off the tight superficial muscles is needed in order to relieve pain, whilst the patient needs to work to strengthen (in particular) the deep core muscular system to help with joint stabilization and to maintain the range of movement that is natural in a hypermobile body. This loss of the full range of movement in a normally hypermobile body is something that undoubtedly leads to further pain, and many hypermobile people complain of 'feeling stiff' as a result. Whilst the over-worked muscles may receive manual therapeutic attention, it is the job of the patient to strengthen and this whole process is cyclical and seemingly never-ending.

Of late I have experienced such arm restrictions that I was neither able to adduct my arms (lifting sideways), lifting my arms forward, and hardly any movement on extending my arms backwards. There was simply no strength in my upper body to support my arms let alone allow for any, let alone my usual 'hypermobile' range of movement. There was also absolutely no strength to the extent that I couldn't even hold a newspaper. Tasks like drying my hair had become virtually impossible, and my desire to garden all gone out of the window because I could only manage to trowel out one weed!

I thought I might need to contact my (old) physiotherapist because she was so skilled at helping me, but as this was not possible for various reasons, I had to look at my blog and my books and see if I could find any answers in the form of exercise management. Interestingly Bowen Therapy had helped with my spinal extension, but now I needed to do a whole batch of exercises, and I knew this, in order to give myself any hope of gaining any upper body strength and stability and so I could also improve my arm range of movement again in all planes. Luckily I came across about 8 exercises, and even after a week my range of movement has improved, and already tasks like drying my hair have become possible again. I have also been doing remedial work on my neck, and since everything is joined onto another piece in the body, therefore no part can really be separated, this is important as the neck work will also support the shoulder/upper body work. In addition I also have to continue doing gluteal strengthening work at least 2-3 times in the week. It is a big ask. I also aim to walk for 30-60 minutes a day and then try to fit in some ballet.

So I have written this to show just how dedicated the EDS-HT/JHS patient has to be, and how commitment from the patient is so necessary in order to manage the condition. I will of course check in for some more treatment - be it Bowen, Osteopathy or Physiotherapy, but the hard work has to come from me. On that note,  I must sign off and get started on my 20-30 minute program!

My diagnosis of Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES)

Over the past 3 months I have had 3 separate hospital admissions, some of lengthy duration where the condition Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES) was missed by general surgeons, colorectal surgeons, gastroenterologists, rheumatologists, gynaecologists and pain management experts. I go to another hospital for a follow-up out-patient appointment where the gastroenterologists are EDS experts and lo and behold in a very short time, ten minutes - a diagnosis is made of this peculiar, although by no means recently discovered condition (1924). I had to perform a sort of physio assessment by getting into various positions, going into forward flexion, rotation of spine, extension of spine as well as doing things like pushing my legs against the doctor, and other similar movements. This was to see if the pain was triggered. When I saw my osteopath later in the day, he also did a further assessment of getting me to raise my head and aiming one elbow at a time towards my knee. This did bring the pain on a bit.

The treatment (and there is some) involves a steroid and local anaesthetic into this nasty trigger point which is the result of a nerve that has come from the spine and wrongly deviated into my abdominal muscle (most likely rectus abdominus), and on palpation feels like a pea deep in the muscle.  I could always located it exactly on palpation, as is typical. I am also to have some manual therapy and trigger point work in the area, which I have begun.

Anyway, despite numerous investigations (MRIs, CTs,Ultrasounds) this was finally picked up on simple palpation and some movements. I nearly cried with relief when I received the diagnosis. At least I know my pain is not sinister and can now be managed, also with pain relief, I will also be doing some Bowen therapy work on it too.

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During my first osteopathy treatment, O (Osteopath) performed general palpation and gentle massage around the area -  O was able to locate the spot(!). O also had to do work into my inguinal ligament and into the top of adductor longus as well as work in the diaphragm.

Immediately following the treatment, I felt higher up on my hip and out of my hip (taller). The day afterwards things were fairly 'quiet' with the pain location going up to about a 3/10. I was then OK for another day before hitting a massive fatigue and the pain score rocketing to a 6/10 which came mainly from my lumbar spine in my disc bulge/hinge at L4/5. Side flexion was agony. I managed the day with heat - hot water bottles and pain killers. I then saw O the next day.

In the next treatment session O gave me an exercise for my hip to encourage movement which is very limited (internal rotation). O then worked on my back before going back to the pea-site of the pain. There were definitely some ouch movements. O also worked on my upper back and trapezius.

The next day I hit a big fatigue which improved thankfully throughout the day. My upper back was also in terrible spasm. Today I am relatively pain-free, and less fatigued.

I will keep you posted over the course of the journey in my treatment with ACNES.

For further information:
https://www.thepermanentejournal.org/files/Summer2002/acnes.pdf

Ehlers-Danlos Syndrome-Hypermobility Type Books

I have written two books about Ehlers-Danlos Syndrome - Hypermobility Type. The first one is aimed at patients, and is being upgraded into a 2nd Edition later in the year:
A Guide to Living with Hypermobility Syndrome - Bending without Breaking.

I then write a book which is primarily aimed at medical professionals - junior doctors, physiotherapists, psychologists, Occupational Therapists and more:
A Multidisciplinary Approach to Managing Ehler-Danlos (type III) Hypermobility Syndrome.

Update!

I received a feedback comment today from my last post which is dated 1st December. I think that the reader was wondering how  I am now, given my lack of blogging.

I can confirm that I am doing very well in a musculoskeletal capacity, at any rate. I have had 4 Osteopathy sessions since 1st December, so over the last 5 months, and usually it is to release my piriformis muscles, which are so tight and constantly overwork (bilaterally). For those of you who don't know, the piriformis muscle is a nasty horizontal muscle deep and under the gluteous muscles and can actually squash the sciatic nerve, and generally cause a lot of pain. I do regularly stretch the blighters, but they can still cause extreme pain. I also have osteopathy if my back becomes particularly inflamed and has remained so for more than a couple of days. I then also have my upper traps released and sometimes some manipulation of my thoracic spine to improve it's mobility.

I am still having to work on my medial rotation, which is so restricted, and important in walking and in fact in anything other than ballet. I am improving the use of my hips, rather than "fixing" them when I walk. I walk so much better now than I did years ago when this blog begun. I owe my help to two physiotherapists and my recent osteopath.

When I am not having osteopathy (or physiotherapy), I also self-treat myself using the Bowen Technique, which I also practice. This is excellent and keeps things at bay for a lot of the time in between sessions requiring some deeper work. I have been a Bowen therapist for 11 years now and predominately work with those who have Ehlers-Danlos Syndrome- Hypermobility Type (EDS-HT).

In short, I am continuing to do very well, and I am extremely lucky.

Acute injury and straining a facet-joint

I had a small overnight bag (OK - it was heavier than it should have been). I bent down to retrieve my post, bending diagonally. The force required pulled me to the left and I felt something 'go.' I thought I would get over it until I was holding my new niece for some time on a low sofa . I felt the muscles in the area go into further spasm. I moved about, knowing I had 'done something' more to my back than the usual muscular aches. I had, in the morning, applied kinesio tape to my back, for the sake of the pain in my 'hinge' at L4/5, but it had not helped this more acute incident.

Over night I had more pain and despite glute stretches, there was a slow and gentle throbbing sensation which went into my left buttock and gently down my left leg. I knew I was in trouble when I was struggling to weight-bear on the left leg, but sitting was also very uncomfortable. Luckily my osteopath had space to see me much later in the day, so I was most glad.  He said I had strained a facet joint pulling on the adjacent and adjoining musculature and it was all inflamed (no kidding!). A treatment ensued with the request to ice, drink plenty of water and to use heat pads.

I tried some Bowen moves on the area, but also needed painkillers. A follow up appointment was arranged for Monday the following week. It is all frustrating and I am still in a great deal of pain. It just shows how little I still need to do in order for there to be a full-scale incidence. I am absolutely shattered. To be fair though, even normo-mobiles could have incidents such as this.....

Cracking Thoracic Spine - Literally!

I saw my lovely osteopath today. I said that I would like to include osteopathy (and acupuncture) in my update of the book I had published in 2011. It is really good to have found someone who is a) really good and b) is aware of working with both dancers and people with EDS.

I was videoed walking. On the first go, my legs were more medial than was normal (and certainly normal for me). I explained I was trying so hard to use medial rotation and my adductors! On the second go, it looked a little more normal, but still not showing a very natural use of hips.

I was given some things to do with my feet and then I showed my exercises to T before there was a plan of action for my very tight thoracic spine and ongoing glut medius and overwork right hip and underworking left gluteal.

I actually got "cracked" today at T8 and somewhere else. It felt good, although a bit scary, but it was so tight, something had to give. It is the first time in about 20 years I have allowed someone to "crack" my spine, but it was about stiffness in rotation and it did help to free things up.

Some of the manual work was more painful, especially the work on my medial rotation which is so jammed to the right.

I left with more exercises to build on the  Feldenkrais work of allowing the hips to tilt up and down more naturally. I have to continue with my calf work and lunges. It was a good session!

Feldenkrais Session - Functional Integration® work

This afternoon I had the great pleasure of having a much-needed Functional Integration® (one to one) Session of Feldenkrais. It was something that was long overdue, and I had the privilege of having a session with the lovely Maggy Burrowes who works in South London not far from where I live. Maggy is someone very special and someone who contributed to my most recent book writing all about Feldenkrais for people with Hypermobility Syndrome. http://www.amazon.co.uk/Multidisciplinary-Approach-Managing-Ehlers-Danlos-Type/dp/1848190808/ref=pd_sim_b_3 

After a good catch-up, Maggy begun to work on me, doing a session that was aimed at freeing my hips and helping with improving my use of hips pelvis and to help with walking. Such as the one-to-one work in Feldenkrais, it seems that as the recipient of treatment, that I am doing absolutely nothing whilst the practitioner does all the work. Not entirely so. I was very much processing what Maggy was doing. It was if my brain was listening - certainly my ears felt active, but I was "hearing" the work deep inside my body. The movements are incredibly gentle and the Feldenkrais is working on improving the relationship of the bones, rather than necessarily the muscles, although of course the work is very holistic. In fact, I was having sensations on my head and neck when Maggy was working on my feet. The work is almost playful because Maggy is just coaxing the joints to articulate in a subtle, yet different way.

Maggy started by working on me with me lying on my left side. I then lay on my back to compare the difference before she worked on my right side. By the end of the session, which must have taken towards an hour, the right side of my body (the actual shorter leg/side) felt much longer than the left and then I went to stand, which was interesting. My right knee felt a little more vulnerable - initially since it had its full range of hypermobility fully restored, but this certainly felt OK - I didn't feel unstable. However, upon walking my hips were going up and down and there was far more 'articulation' in the pelvis and I had an improved tilt in my pelvis, improved belly breathing and increased sensation and use of my feet. 

I am now a little tired, which is entirely normal following this work, but my body feels better and freer for it and I think it will be interesting to explore walking with my 'sexier' hips and allow the muscles to relax off that are keeping the area in such a held way. 

If you haven't yet had Feldenkrais as a one-to-one session or Functional Integration® (as it can also be taught in class settings) I would highly recommend it. Maggy Burrowes website is http://www.vocaldynamix.com/index.html and she is a lovely person and as I say, very knowledgeable about Hypermobility Syndrome and also works a great deal with singers, being a singer herself.

Update - Guts, bladder and walking

Diverticulitis - Guts
Since my last posting, I ended up having another visit to A&E and left with three different types of antibiotics to continue to calm my diverticulitis. A recent colonoscopy showed diverticular disease, as expected - there was nothing of further interest (thank goodness!) I am seeing the Colorectal Surgeon on Tuesday. I still end up with pain and inflammation, but otherwise managing my symptoms.

Bladder
It wasn't until fairly recently that I realized that on the whole my bladder was able to retain far more than in the past and that I wasn't waking up (in general) more than twice per night to use the bathroom. This was a big improvement, I believe fully linked the the improved use of trunk and the deep internal muscles and pelvic floor fully firing as a result of improved walking and use of hips. This has been a significant improvement.

Walking
I had to have some treatment on my back as glute medius had gone into spasm and the surrounding tissue. My left gluteal is not firing at all and the right side is doing all the work.  Same old, same old pattern. I have got exercises again - this time for firing the left gluteal and the on the right to improve function of calf. I sometimes wonder if I will ever be fully rehabilitated. Every step I take continues to be one in the right direction... One direction (!) .....

Diverticulitis

I have been really unwell over the past week which resulted in an emergency hospital admission for one week in order to control an episode of acute diverticulitis.

In 2011 I was diagnosed (as per colonoscopy) with diverticulosis which seems to be the asymptomatic form of diverticulitis. At that time only three very mild sites were found. When I was admitted via A&E last week, a CT scan was requested which found significantly more (uncomplicated) diverticulitis. This ultimately resulted in requiring me to be on a clear liquid diet (mainly water) with saline drip infusions and double-antibiotic IV infusions three times daily + pain relief. I left hospital with another 7 day course of two different antibiotics. I am now home, having lost 3kg last week and assessing my diet to ensure it is the best it can be to support my ongoing constipation and to aid recovery. I have an appointment with my colorectal surgeon tomorrow, which is really fortunate.

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Prior to my emergency admission to hospital I had a fairly dramatic increase in weight (about 7kg) and then started to have increasing left illiac fossa pain which became very severe resulting in one episode of vomiting. I went to A&E where I was x-rayed and found that my colon was completely 'loaded.' I was asked to go home and take 8 Movicol laxitive sachets and repeat. This I duly did and then was in so much pain 48 hours later that I returned to A&E. They repeated the x-ray to find that the colon was less loaded, but shortly after a decision was made by the surgical team to admit me to hospital.

I have had years and years of problems with my bowels and difficulties with efficient evacuation. Having tried diet and bowel retraining as well as regular exercise, nothing improves. It is just possible that owing to my EDSIII the stretchy collegenous tissues might mean that there is an increased risk of diverticulitis (Knight, 2013). This is far from proven as yet, and further research would have to thoroughly investigate any such link. I am beginning to accept that as much as I can do with my diet and exercise that it might be my faulty connective tissues that are rather unhelpful in my management. I do fear for the fact I might need surgery. I have been warned that if I have another one or two episodes resulting in admission that this is likely to be the case.

I will have another colonoscopy in six weeks to assess the situation. I will, as ever, keep you posted.

Update - TMJ/Dance/Walking + Abdominal Adhesions... :(

Walking/Fitness
I am now feeling seriously "fit." I am now walking really well - so properly using trunk and hips for the first time ever. This is meaning that I am now using all the trunk and hip muscles and this has meant my walking speed has now really improved and that I am losing the last major bit of spare-tyre that would never go from my middle. I think it will soon be time to do some running again....

Dancing
As a result of my work in parallel and strengthening that alignment, has actually reinforced the strength in my core stability and in dancing as well. I have, for sometime, been experimenting with the order of the classical ballet barre and have made many changes to the order of the class as well as mainly doing the barre work in the centre (e.g. with no support, except for 2 exercises). I need to continue my adage work, and urgently need to work on pirouettes and allegro.

TMJ
I had some more work done on my TMJ and now have an exercise to strengthen the right side of the lower TMJ to try and stop the deviation to the left. I had no spasms during treatment and no reactions of any (negative) kind the next day. This might really get sorted out. I must still get my orthodontic appliance reviewed. 

Abdominal Adhesions
A recent scan has revealed that I have adhesions to my left bowel, ovary and the back of the uterus. It is coming up to crunch time and probably more surgery later in the year.....:(  Endometriosis etc. It looks like surgery will certainly be required. Again....

Work on TMJ (Jaw)

I finally braved it and asked the Osteopath who has been working with me lately to have a go at working on my TMJ. In the past this has been extremely risky and increased my Movement Disorder as well as making neck and migrainous symptoms worse.

This time, because of the extra work I had been doing on strengthening upper body including traps and rhomboids etc, there was much less problem with that "kicking off" and there were no "spasms" or the Movement Disorder, which had been so difficult in the past.

G did work in gently mobilising neck before doing actual work around my TMJ (so sensitive!) or inside my mouth (with gloves on). My jaw so wants to go to the left and everything is pulled in that direction so he had quite a challenge in persuading the right side to take over a little more.

After the treatment I felt my jaw was more clicky, but unfortunately today I am feeling a little migrainous and queasy and the area feels rather sore - but getting into this area has always been 'dodgy' so am happy to see how it goes over the next week, or before I can have more treatment.

It would be so nice to have less pain in this area and to stop hearing my own heartbeat all the time, not to mention opening my mouth more 'straight' and having a less clicky jaw!

Working on Walking

I saw my Osteopath yesterday (change from physio) because I was getting some sciatic symptoms on the left leg. I imagined this was a partial result of the new hip exercises and work given to me by my physio, but it was going to be much easier and quicker for me to see the osteo, who is lovely, like my physio.

The osteo noticed similar things about my hips to the physio and said that periformis was massively overworking and that my glut max and other gluteals were doing very little. He watched me performing some developes and other movements and then worked on my gluteals and some of the discs in my spine which had become irritated and in some pain - notably L2/3.

After this I was given two new exercises which complement and take further the exercises I was recently given by my physio. One involves pointing my foot around the face of the clock so for right leg pointing at 1pm, 3pm 5pm etc and left leg at 11, 9, 8 etc. I have to do the left leg twice over because it is not as good as the right one. The second exercise involves forward lunges ensuring I rotate my trunk and use my hips and that my knees are pointing medially with my head straight forward. Again I have to do more reps with the left leg in extension as it is not tracking as naturally or correctly as the right leg.

Following doing all my physio and osteo exercises I went on a walk and was really focusing on keeping my left leg tracking medially, rotating in my trunk and swinging my arms and then using my hips and toeing off. It was a lot to think about - it is amazing just how complex walking is as a movement pattern. By the end of the walk (about an hour) my TFL and adductors had really had enough, but I could feel my trunk working properly and some hip hitching and rotation movement. I then did some adductor stretches and then was really annoyed at how tight my hamstrings felt!

I am now quite fatigued, but that was a lot of new movement patterning. Think my spine, adductors and hips will be rather sore - just more training pain!

It is interesting seeing two different therapists of two different disciplines, but even though they don't know each other they seem to complement each other very well. I would love some Bowen too at some point!

Physio Update - Right hip problem

For sometime now I have had problems with my right leg when it becomes the working/gesturing leg (in ballet), rather than the supporting leg. Flexion in external rotation has been difficult so I have been hitching my right hip in order to get higher extensions. The left leg, by contrast has become a much better working leg as it was being so overused as a supporting leg.

My physio could see the imbalance and said that it looked like my gluteals were weak which was contributing to the problem. This had been pointed out be a Pilates teacher a week ago! He did some manual therapy on my right hip and gluteals before giving me an exercise that would involve working on my medial hip rotation (which is very restricted) and would also ensure that adductors were being used as ITB and TFL have been too dominant on the right. He also asked me to do some work in kneeling.

I did my exercises before going for a long walk today and my hips are now sore internally, but I felt very upright and poised; pelvic floor working very well and thoracic spine more engaged following work in arms and upper body (doing a version of 'the plank' modified and using the wall).

This is the first physio appointment I have had for four months, and shows how well my musculo-skeletal system is working (at leasst). Pity about other systems.....!

My new book on Ehlers-Danlos (Type III) Hypermobility Syndrome

My new book comes out in mid-March - for further details - see below:
http://www.singingdragon.com/catalogue/9781848190801

Movement Disorder - Neuro Update

I had a hospital appointment with the lovely Dr E and he has suggested that I need to stop having any manual therapy for the moment and so physio is presently suspended until further notice. I wasn't very happy about a total ban on all manual therapies as my upper back and neck need attention, so will continue having Bowen Therapy which is less risky for the area, it seems, than physio. Dr E has said he will send me to a Neuro-Physio if my movement disorder persists at its present level. We have agreed I am in a flare-up situation, but that it should settle, as it has been before. He will certainly see me again sooner if there is a problem, or send me to neuro-physio. I can continue taking medications, as appropriate.

A few days prior to seeing Dr E I did some Mind Body Bowen work on myself which gave me another beautiful emotional release. Everytime I do this I get just a little bit better.

Ten days after my last physio appointment and things have now really calmed down and there are no spasms, but just muscular tightness and tension. Bowen required and lots of sleep!

Tektonic Spasms and Movement Disorder

Yesterday, disaster struck after work on my neck, approx C3-7, TMJ and trapezius. It is very definitely not my physiotherapist's fault. These areas of my body almost seem like a massive danger zone and should be surrounded by red warning triangles. What happened next has happened in the past (see 'youtube' link below) - but were stronger than I have ever had them and in waves and pulsing like movements, systemically. When I left physiotherapy I was standing at different bus stops (as I had to change buses) and was standing and my body was literally going into these tektonic spasms - like the footage below only much worse! It was unbelievable and quite scary and hasn't happened in "free standing" not like attempting an exercise (as below). I got home and had to take some medication and basically rest. I ended up in bed at 6pm too tired to do anymore, but then woke again about 10.30pm for about 2 hours. I then was "out for the count" again.

Today I am still in massive fatigue. Is a struggle concentrating to type. I have had lots of painkillers, two baths, more sleep and have now got someone in to help me and do some cleaning and give me some support. As it snowing outside, I have no strong desires to go anywhere, will take today as a duvet day and an opportunity to catch up on some missed TV programmes.

Although this is to do with my pain and changes to my nervous system in general, my physio and I have wondered about other "feed-in" factors such as mood, emotion. I have thought about this over the past day and do not think that either are involved as also recall having more "spurting" or "pulsing" movements when having Bowen. The movements do not hurt me at all, but there often feels like a "charge" - perhaps like electricity, with a hum. I am aware that people with epilepsy and those with migraines often have signs and symptoms before they have an attack, and this feels similar. There are more blog entries on this, if you have the time to go further back. Meanwhile, below are the promised "Youtube" videos from 2011. 

You Tube Links of 'Movement Disorder'
 http://www.youtube.com/watch?v=7KRCw4tyuLo
http://www.youtube.com/watch?v=JZblJySdXLE
http://www.youtube.com/watch?v=MuyJvWCIwDM 
http://www.youtube.com/watch?v=L8EoXU-SW0M

Physio Review and neck extension work

I had a physio appointment today. Things have calmed down a great deal over the last two weeks with deep-core muscles really kicking back in making my life much easier. I think the swimming and Biodanza helped with that. Despite a day of the most awful and screaming arm pain and two days of fatigue, things are better, but highlighting problems in my thoracic spine (getting very hunch-backed) and also arm-pain.

M did some work into my neck. In occiput - and extension in that area, there is no problem, but around C4-7 in neck extension things really kicked off huge muscle spasms. He did work on scalenes, ribs, traps, and has requested me to spend some time on the overball working on my neck extension, imaging if need be to start with if muscle spasms and twitching are rife. This area and thoracic are the last bastion now of my treatment - now almost 5 years later!!!

Biodanza! -

I started a new dance class called "Biodanza." It was absolutely wonderful. I felt joyful, energised and laughed so much during the class. I also realised how cardiovascularly unfit I have become lately. The form of dance is based on Jungian symbolism, creative, sensual, and bio-units -e.g. atoms in movement and awareness of space and what total freedom of movement.

The sessions involve working in a group as well as in pairs, small groups and individually. We started in a circle holding hands and walked around and this sped up. We then did some hip "wiggling" work to another piece oc music and shoulders to another piece of music. We then followed Gita, our teacher as she led us through a sequence, which really got us moving, this was individually. Then we did more work in smaller groups and then had to move about changing groups very fast - this was quite tiring, but fun. After this the class was split into men and women, with men dancing first on their own, and in their own way to the song, 'What a Feeling.' then the women had a go. I was doing a mixture of ballet-type moves whilst just doing any types of running, jumping, and turning I fancied. When we had done this we gathered very closely together whilst we were all breathing to recover.

The second half of the class was much slower and involved more tactile and sensual work which I very much enjoyed. One thing involved people in groups of four layering their hands, layer upon layer. We also did some from the heart work, and more circle work with our eyes shut and finger tips connecting. We then had the opportunity and priviledge to walk around the room, make eye contact with someone and give them a hug. This felt very nurturing and safe. The class ended with the group in a circle and walking about which became more and more energised.

I had wondered that I might really find the class too much for my calves, but they were fine. My hips and lumbar spine felt a bit sore the next day, but that was a very minor pay-off for a wonderful class full of laughter and real freedom and creativity of movement. I am looking forward to the next class, but feel that I am now ebbing away from the constraints of ballet and technique to a more liberating form of movement.

Images of Kinesio-taping

Me taped - lying in child's pose (position that tape was applied)