Spiralling and calf work

I had an interesting physio session today. M decided to work down my right lower limb and then up the left lower limb. He is working on various spiralling patterning in me. All this lower limb work involved a lot of calf work and I coped really well and in fact it was the first time for me that it was finally hardly an issue. I got through any difficulties with use of breath for relaxation. The fact that M had explained to me some weeks ago that my sensitisation of (an overly) sensitised central nervous system aka chronic pain would bottle neck in my calves (due to previous traumas) has really helped me to understand when and why they become 'wired.' However it is a huge breakthrough that I am now allowing M to work on them properly without throwing the kind of fit I would have done not so long ago. For me understanding things is the key to breaking through these kind of issues. A lot of work has been done on the whole calf issue over the past few years. Latest measurement of calves now leave only 2cm between right (38cm) and left (40cm) legs. Our hope is to reduce this gap by a further 1cm, which would be normal.

M did some work into right obliques, psoas/diaphragm and then set about giving me two exercises. One is being on all fours and simply extending the lower limbs (whilst remaining weight-bearing). The other exercise involves putting one arm out to second position (whilst kneeling on all four) and then me following the arm with my head/neck, thus involving upper thoracic and this new area of sensation we are awakening in upper thoracic spine. It is an extension of the first spiralling exercise given the other week. I then repeat this to the other side. M also asked me to re-start my psoas exercise in addition to my other staple core exercises.

I am feeling really positive at this stage in the treatment and can now see some kind of end stage when all remaining faulty patterns have been removed and final areas of rehabilitation (including TMJ) take place. Then I will just need physio for maintenance only. I am continuing with all cardiorespiratory work, carefully pacing up activity. I have come a very long way in my musculoskeletal rehabilitation over the past 4 years.

Muscle stiffness and "spasm" and strength

I thought that I would share some of the thoughts that have been going around my head lately in terms of contemplating why I get this horrible locking muscle stiffness. One reason might be that I am not doing enough stretching after exercise - ballet or jogging. Another reason might be that as my muscles are regaining strength, they are tightening up in response to this, but it is not a feeling like DOMS. It is hard to reduce this muscle spasm and stiffness which tends to be at localised spots such as gluteals and abdominals. I have some tips for managing this. I have been doing Bowen lumbar spine moves to kick start things before then having a warm bath to allow my muscles to "relax." This is key as first thing in the morning is worst. I am taking magnesium as a supplement for nerve/muscle function. If the spasm is very severe I will take an NSAID and then possibly a small dose of Diazepam. Stretching is also an important strategy in reducing the spasm and getting moving. I am then also having manual therapy (usually physio) to reduce this - but it is a vicious cycle and it is difficult to break - I am in a bad spell of it, but have just recognised some major strength gains, so will look at this as the main reason and take heart (or muscle) and go and have a good stretch to reward my efforts.

Hello T8! - Improved strength and control

I have been dancing from home rather than attending classes for various reasons, and have been doing a great deal of experimentation, including changing the order of the traditional classical ballet barre and in doing more proprioceptive work (eyes closed and work for balance). Things are really beginning to pay off. I decided to do my usual barre work in the centre (except for Plies and ronds de jambe) and noticed I am now using both legs much more equally and that there is much greater control and sense of balance. Height might have reduced in some extension work, but there is a compensatory strength and control which is much more important, and flexibility is there, but I can't cheat in the centre!

Amongst the relevations of improved strength and control I noticed a new sensation in and around about T8 where I had feeling in that section of my spine for the first time, giving me extension at that level, but also greater functional support in that level for my arms. Actually the area felt sore - but I see that as an encouraging awakening of a new area of my body which will finally relieve pressure from C-spine and particularly traps.

I am still doing plenty of core stability work and have been on a few runs, increasing my length of run each time as I have had to build up again post-surgery. I am also very tired, but sleeping better again for the first time in a long while. I need my stress levels to reduce as my cholesterol is now very raised - for the first time in several years. This is a surprise as my diet hasn't really significantly changed, so stress is probably the culprit (GP to verify). 

Physio Update

I had physio both last Saturday (14th) and Wednesday (18th) July. On the first of these two appointments M worked on my lateral line and did a lot of work around sacral and gluteals. 24 hours later I did have autographs of his thumbs (or so it felt) in my gluteals. However I did manage a little bit of running within my walk to and around the park. I also did some ballet. The next day I paid for this and was in a fatigue, but had to override it as I had an overly keen painter coming to my flat to finally paint over flood damage.

On the second appointment M dealt with my left shoulder, left SCM and TMJ. There was a lot of spasming going on, but we found that holding me in the stretch made the spasm and twitching relinquish. M did a move in anterior neck (scalene) area, but I didn't like it, so he worked posteriorally again. His theory was to relieve the superficial muscles to give the deeper ones a chance. After the session I did feel 'lighter' in the area, but my neck did feel a little more out of control. He advised me to be doing some overball work every day to keep on strengthing the neck as well as pelvic tilts for deep core work. He gave me a new spiral stretch for my arms which I am really enjoying.

I had arrived at the session in a very upset and stressed out state - I am in some kind of burnout and have been through enormous stress in the last few months. Talking through the fact I had need to readdress this issue helped somewhat. I am finding physio with M really enjoyable and like the fact he works to address the fascial tissue helpful (from my position as a Bowen Therapist) and that he works on the Myers principles - which is interesting and work I know from Somatic practices and my work in Pilates. M is also very good at explaining chronic pain.

TMJ Update

                                          My Michigan Splint
On Tuesday I had an appointment to see a Head and Neck specialist. One of my GPs had not briefed the consultant at all well and despite my requests to see a particular person (who is very familiar with EDSIII). I was sent to the wrong person. Needless to say both the doctor and I managed with this odd situation as best we could. He has referred me for an MRI scan of my TMJ and a routine dental x-ray. At this point we need to decide whether is a biomechanical problem or whether we are talking management of facial pain. I showed Mr L my Michigan Splint and he could detect no major problems with wear and tear - although he said it might "feel" different over time. He said that my bite was better aligned than his and that orthodontics wouldn't solve my problem is what was my TMJ in motion that was the problem not in a static bite. Needless to say he has referred me on to the doctor I should be been sent to and we await news of scans - mainly to rule out discogenic problems. We both agreed this should be managed as conservatively as possible - e.g. no surgey! After my recent experiences I was more than happy about this.

Further 6-12 weeks recovery, Post-Operative

I saw my physio today. He said there was a lot to do, so didn't waste anytime before starting to release my traps and other "nasty" upper body trigger points. Then there was work on my quads and hips trying to do anything to disengage my hip flexors and everything that was gripping on for dear life. Although we cannot yet prove that recovery takes longer in EDSIII/HMS patients, and the evidence for wound healing is anecdotal, my physio did say all his EDS patients taken longer to recover post-operatively. M has said to me that I can expect it to take a further 6-12 weeks to get to my pre-operative state. I had feared another few weeks, but this is a lot longer than I had imagined. All my superficial muscles are just fixing so he said there is no point in jogging, as pelvic floor will not be working, so we really are back to basics and pelvic tilts and trying to regain strength in my deep front line and lateral lines (Myers). At least I know now and can feel less guilty about resting, the reason for why I am feeling so fatigued and that it is all going to take a long time. It does, however, feel very hard to keep going back to square one!

Hanging into my Joints and no control!

                                                       Isobel in 'attitude' photograph by Marial Schroer

This picture was taken on a day when I had lots of control. It was also very wet outside -but that is a different story. Anyway, It is possible for a hypermobile person to have strength, but they might find they sacrifice some of their flexibility. Some of us (e.g. me!) want it both ways, but actually prior to my hospital admission I was probably the strongest and fittest I had been in myself physically - almost ever in my life. Now I am back to hanging in my joints, moving poorly with minimal control of my hypermobile extremities. It is miserable, painful (my knees keep slightly going out on me) and very tiring. I still have numerous trigger points including in my arms and hands, upper back and neck. I have no idea how much longer this state of affairs is going to last, but I haven't bothered to get dressed and am hanging about in my pajamas until I need to go anywhere later on. I think I need to keep resting whilst doing some very gentle and minimal physiotherapy rescue exercises - e.g. pelvic tilt. Will try and see if I can talk to my physio later today.

Screaming Pain and why

Ouch. Ouch. Ouch. Every point in my body is screaming and sharp pain everywhere. I cannot deal with this. Back to bed. Here is my article to explain why http://www.telegraph.co.uk/health/9349660/I-feel-brain-fogged.-Its-a-cruelly-deceptive-illness.html

Four Pelvic Tilts and Back to Bed!

Well, this is a very sorry state of affairs. I am only able to manage four pelvic tilts before the muscles completely fatigue. I have trigger point pain in numerous sites in my upper body. I have no "fuel" and need to go food shopping - but have no energy to even get about my flat let alone manage that. I can't bear this - however, I just don't think I can fight this one. I need to rest and wait until I have energy again - however long that might take.

In Severe flare up - time for Hula-Hoops!

So we have cellulitis, fatigue, pain, and now it is time for medication in the form of Hula-Hoops. Suddenly, I have developed a craving for these little potato rings. Not the healthiest of snacks, it has to be admitted - but it is the inner child in me and it is what I want whilst I am feeling bad. The alternative is chocolate digestive biscuits.

Superficial muscle overwork, whilst deep cores ones do nothing +Hypermobility

Since my stay in hospital my muscles have deconditioned. Research by Keer & Simmonds suggests that muscle tissues atrophy greatly in the first 5-7 days during inactivity, particularly the endurance slow-twitch muscle fibres (Keer, 2003, Simmonds, 2003). Additionally, and interestingly, muscles also atrophy in response to pain and fear (Simmonds, 2003).I am not doing very well. Although I had paced my activity up again and managed to walk around my park (normally I now manage to jog around 3/4 of it). My superficial muscles are still grossly overworking at the expense of the deep core ones which are just doing nothing. This is an extremely frustrating situation and one that for reasons I do not fully understand seems to happen regularly to hypermobile people. At some point, the deep core muscles do reactivate but until they decide to activate I have to play a waiting game. The reason for this switch in the wrong muscles -e.g. superficial muscles massively overworking at the expense of the deep core ones is not something I understand. It is very irritating and means I go back to hanging into all my joints until the deep core ones decide they will bother to activate. I know that 9 days in hospital in bed hasn't helped much and although I am trying my best - including trying pelvic tilts and other things to encourage their awakening, I am pretty much stuffed until the deep core ones ignite. Do any physios or other medical experts reading this have any thoughts or theories?

Bladder-Hell! - 9 Days in hospital

I have just got home after nine days in hospital . I am utterly exhausted and my joints are in a state of collapse - a far cry away from the lovely picture there was of me in yesterday's Telegraph. I have gone back to collapsing into all my hinges and have no strength. I am sure I will get it back, but it is going to be slow. So why was there such a problem?

I was admitted for a cystoscopy, which involves a camera being inserted into the bladder so that it can be examined for size, capacity, abnormal cells. As per my entry in 16-4-2012, there had been a problem inserting a catheter because I was in terrible pain, so one other reason was to look into this as well as endometriosis.

Given my present state of anxiety in general and because of my HMS, I asked if I could be admitted the day before the procedure. I then requested that they kept me in to repeat the VCMG test and that I did not want to leave until I could properly empty my bladder. The hospital were marvellous in all aspects of this and agreed. However, the chain of events that followed was not expected. I should have been home after the VCMG - but here is what happened!

I had a choice of a suprapubic catheter or a urethral one, and upon discussion with the doctor opted for the former (remember, my previous experience was bad). The surgery went fine and although the pre-med had no effect on me at all - I lay as still as a corpse and tried very hard to keep calm when I was given the sedating injection. Afterwards I woke up fine and my throat was sore, and later that night I passed about two cups of blood, which was quite horrific (but I had been pre-warned). On Tuesday morning I felt quite good, and then after lunch went downhill rapidly and then was in severe pain. I was crying and in huge distress. My BP rocketed and the on-call doctor finally came. He took some bloods, ordered oramorph and flew off. I remained in this state for 24 hours. My abdomen was like a board. When I got down to radiology, he started to look at my bladder and said, "uh oh, we have a problem." I said, "what sort of problem..?" He said that there was fluid where there shouldn't have been and he wanted to abort this test for now and ultrasound me. This he did, and it confirmed that the suprapubic catheter had punctured my bladder and that fluid was seeping into the peritoneal fluid. He said that if I would allow him to urethrally catheter me he would be able to prove this. I agreed he could try but just as he almost got it in I couldn't cope with the pain again and he sent me back to the ward and said he would inform my team straight away.

I got back to the ward and they said to me I am 'nil by mouth' immediately. It looked like I was going to need another operation to repair the hole. The urologist came down and said to me that he would only be taking me to theatre to insert a catheter so, if they gave me lots of oramorph, would I let him try now because I would probably feel better more quickly. I agreed. He was very clever. Told me he was inserting some pain numbing drugs and popped it in. He said that the "hole" would repair itself, that we weren't sure how or when or why it happened, removed my suprapubic cannula and left.

The next day my abdomen was still sore and very tender. I hadn't opened my bowels for several days and then when I did I managed to contract diarrhoea and had to be put into an isolation room. I was kept in there for 36 hours and was not allowed out until they had proved I was not infectious. I was not. By this time, my wrist was also really hurting and it turned out I had an infection in my cannula site. My wrist was swollen and very sore and I was put on oral antibiotics. By the weekend, I required oramorph again and then had to have 3 huge doses of 2 different antiobiotics by IV line, over 2 days. My bladder was settling down and I requested a catheter bag you can wear on your leg because I was increasingly immobile and in more joint pain. This I was given, and then I was allowed to wonder around on the ward.

By Monday, they removed the catheter. It was a scary moment, but my bladder did then behave. I do still require further testing, but they are delaying it for a while so I can recover. My wrist still hurts, and I have two lots of different antibiotics to take until the end of this week. The hosptial did do everything possible, but I am aware of slower wound healing etc. I also despair about the temperature of the room - no wonder infections are rife.

I cannot cope with much more. This year has been the most stressful ever. Physically, I was fortunately well before I went to hospital, but I am very weakened again now. I will have to pace myself up carefully, and will probably need some physio. Feeling anxious, stressed and upset is not great. Needless to say, the Telegraph article did cheer me up yesterday, and all the other reader response (appreciated) - but today it is back to coping with my body and a miriad of other worries, a bladder with a hole in it and a wrist to match. Welcome home, Isobel.

Severe Autonomic Nervous System Disruption and Hypermobility Syndrome

Although I started off in severe pain over night - back pain, psoas in huge spasm and abdominals, this has now led to the following - and seems a regular pattern in myself (not sure about everyone). There seems to be severe Autonomic Nervous System (ANS) disruption

• Excessive urination - needing to pass urine on average 8 times per hour. The worst I have had is 15 times in 90 minutes, but not unusual
• Freezing cold - despite a bath, electric heatpad, two duvets and a dressing gown, thermal pyjamas and a cat - hands and feet especially cold
• Heart rate/Pulse rate changes
• Digestive system very gurgly and noisy and guts in spasm. Nausea
• Muscular spasm attacks and twitches (more neurological than Autonomic Nervous System)
• Complete brain fog and thought processes very slow. Headache
• Global aching and trigger point pain (not ANS related). In 'tender' pain
• Feeling "wired" 
• Fatigue will follow on

Today will be a fairly wasted. Trigger unknown for ANS disruptive symptoms. Recovery - 24-48 hours.

Autonomic Nervous System and Fatigue

I came home and then not long after, I received a mobile phone sales call. I was about to change deals when it was if my battery had just run out. I was suddenly ravenously hungry after a very busy and stressful day. I just couldn’t make any more decisions and go through contracts or small print. In the end I just had to hang-up and stagger to the kitchen and rapidly heat a prepared stirfry and eat before I literally passed out.

The next day I woke up with a splitting headache and ached in general. My head was very fuzzy and foggy, but I had to battle on with patients to treat. At lunchtime I received a call from a man who needed to measure a new bathroom window I need. I was standing leaning on the wall with my legs crossed in order to get any stability. I then went to bed to try and rest before treating again much later in the day. The following day things were not much better, but again I had patients in the evening. I did cancel a friend coming for coffee and a treatment swap, but had to preserve my energy. The day after that was still similar, only I was in more pain and by day five I had no energy and spent most of it in bed, aching, in severe pain and on lots of pain medication. Then the excessive urination started which seems to correlate with these episodes of severe global nodules of pain and fatigue. This, I am assuming is all related to an Autonomic Nervous System that is massively out of kilter. In my experience there is just no point in fighting this, and the quicker I give in to it, the more likely I am to recover.

Today I am finally better, and a bit cabin-feverish, which is a good sign. I am going swimming as need to do some exercise very badly – did a little ballet yesterday, from home, but had struggled with walking the day before that. Hopefully this fatigue has now subsided. Until the next time.

Hospital Appt update + Biofeedback Training Update

I had had a stressful day. I had attended two hospital appointments one was a pre-operative assessment in advance of my bladder surgery on 18^th June. The nurse, although she meant well, was a real ‘jobs-worth.’ I had helped out as much as possible by writing her a list of all the medications I am on, medications I am allergic to and my ‘special needs’ during surgery – e.g. give me a very good pre-med, ideally admit me to the ward in advance of my surgery. The nurse didn’t appear to know anything at all about Ehlers-Danlos Type III Hypermobility Syndrome and was googling it on the internet. I did (tactfully) try to suggest I explain and then said I did know a little bit having written a book on the topic and being well on my way to a second. This, somehow didn’t do anything to appease her. I asked her about being able to be admitted onto the ward and she said she would email, but was very negative about it and didn’t think she’d be able to help. So much for patient care/requests etc. There were sound reasons for my request, but she just ‘wasn’t getting it.’ There are times when I begin to question the clarity of my own communication!

After this appointment I had an hour to wonder around the streets surrounding this busy central London hospital. I had lunch in an area of benches, half of them with pigeon turd on them. At least it was outside on this gloriously hot day.  I then returned back to a different department of said hospital for a review of my Biofeedback Training. Unfortunately things hadn’t been positive for about the last ten days and I had again resorted to laxatives, where Balti had failed, and had a very sore botty yet again. I said I had resorted to straining and using maximal effort sometimes with very poor outcome. Nurse V said for me to use my bracing technique and to ‘pump’ my waist muscles and then wait a few moments for nature to take its course before trying again. She reminded me not to take large inhalations in advance and to remain slouched and relaxed. She also suggested the use of glycerine suppositories for later on in the day, if I needed to complete my clear out. We rebooked a new appointment for late July and I left full of new resolve to sort out my bowels.

The day ended with a meeting with my publishers about book number two (or three, if I include my poetry book) and it was a long, but very useful meeting. The book is very likely to be restructured, but we will wait until we have all the medical team’s input before doing that.

More Feldenkrais

I have been a huge fan of Feldenkrais for a long time now. I recently did a week course on use of breath in Cornwall and then last Sunday did a course involving use of breath, voice and pelvic floor. The work involves bony movement rather than forcing or fixing lots of muscles as can happen sometimes via Pilates work (in the wrong hands). When I say 'bones are moved' this of course involves muscle tissue as well, but we are required to use minimal muscle effort in Feldenkrais work. Being the typical 'overworker' I am, I did mange at one point to be moving in extension and in another movement plane (incorrectly) rather than just elevating my side (when lying on my side). You'd have had to been there to see it!

One of the things I particularly enjoyed from last week's workshop was use of breath - the notibly hissing which I found a very powerful way of connecting with feelings of anger. It was also a good way of engaging pelvic floor muscles, as was making "shush" sound. We also did 'sea-saw' breathing and at the end of the day some imaging work in connection with use of the sitz bones. It was an enjoyable day and Maggy was excellent.
I would highly recommend Feldenkrais for hypermobile people and indeed there was another hypermobile person in the class with back problems and although a bit anxious about things, she was reassured and seemed to be just fine with most aspects of the class. Go and try!

Best jog/run ever + Psoas

I did my best jog/run ever. Almost right around the park, small bits I walked only. The reason I couldn't quite make it to the finishing post was a big stitch I keep getting in right diaphragm. Must do some Bowen on this.

The Psoas strengthening exercise is going well. It initially caused a bit of back pain and for my ITB to be slightly irritated, but otherwise I can really feel the difference it is going to make to supporting my pelvis and abdomen and lower back. Addressing psoas will stop me going to forward flexion as psoas 'aggressively' grabs me. It will help with hip flexors.

The ankle/Achillies stretch is painful - but it will help with foot/ankle mobility and help with calf etc.

Psoas Bites and Calf Palpation

I had physio today. Despite my email to M complaining about migraine and TMJ-related symptoms, I then told him my calves were completely 'wired' so he decided to address this. He begun by asking me to do a calf stretch. Actually this was a more soleous and achilles stretch and showed these areas are very stiff in me and so this is a new stretch for me to do. This didn't 'upset' my calf.

M then assessed my hip joints and  hamstrings and psoas function. My psoas is very weak and therefore highly reactive - it 'grabs' when threatened. I now need to strengthen it so it doesn't go into this reflexive response. I have a new exercise to do lying on an overall (under my lumbar spine) and then bring my legs into flexion, one at a time. Predictively, the left side was weaker than the right.

M then did a lot of work on trying to calm down my spine and the sensidised senation in my calves. He also did a lot of work in my T-Spine and Rhomoids and lev scap, all of which was painful and very tight.

The session ended with M palpating my left calve in great detail, including posteriorly. He was able to confirm how nice, relaxed and free the muscles are - even though I have horrible sensations in them. I need to keep reminding myself about this, although academically I have always known that there is no injury in them, but all the pain/sensations are chronic pain problems and faulty neural pain pathways.

I am seeing M in 3 weeks, just before my bladder op. We are presently still up against things in terms of lack of sleep and general autonomic dysfunction. Jogging etc all going quite well!

Feldenkrais Works!

I have been doing some Feldenkrais sessions and can really confirm how marvellous the work is and that it is highly effective. I arrived with my shoulders attached to my ears and now have a neck again, freer shoulders and a fully liberated thoracic spine. I can swing my shoulders freely, rotate my trunk and my hips feel freer. I have taken less painkillers, been able to run further and feel much better than I have in a while.

This week is National Feldenkrais Awareness week. I would highly recommend you trying to get along and try a class or visit the website http://www.feldenkrais.co.uk/

Suitable for all hypermobile people, injured dancers, people of all ages. Feel better for it - I know my body is.

Shoulder subluxes during ballet

On Monday my back was taped up with Rock tape - two pieces down my erector spinae muscles from my shoulders down to about T7/8 and then a horizontal piece of tape across the stop of my shoulder line along traps. This was done with the thought that it will hopefully give the muscles in the area a rest and to give support in general to the area. An outcome is never definitive - but that was the aim of treatment.

I have problems with my arms in classical ballet second and fifth positions  at the  best of times because I am so weak in the lats and upper thoracic and because some of the muscles overwork. I kept on getting corrections about my arm (especially left) and elbow line throughout class.

We were doing an exercise involving taking the arm to fifth with the leg in attitude and then to do a promenade. I have done this numerous times - but when I took the left arm high, my shoulder did something rather extraordinary. In an effort to by-pass the tape and avoid the restrictions it was (necessarily) imposing, I think my shoulder slightly went out of joint (Subluxed) so that I could achieve the movement I needed to make. The result was extremely ugly and an appalling movement pattern to reach the fifth position with the left arm high. My teacher said, "I don't think you'd better do that ever again!" as if it was all my fault and something I had done on purpose. I generally didn't expect that to happen!

I felt quite upset after class and had pain all down my left arm, into the shoulder blade and at around T7/8. I have taken some painkillers and probably should ice. I also have a huge bruise coming up on my left leg, posteriorally,  mid-calf. Sick of the same injury patterns.

Anyway, I think that the tape highlights the fact that even limiting movements mean I will try and screw it literally elsewhere in order to achieve a movement I want to make - even though the result was a subluxation. The left shoulder is clearly very weak and there is no doubt there is little strength or control in the shoulder girdle with some muscles in huge protective spasm. This is all information and highlights where further treatment and strengthening work are required. South of about T7/8 is looking substantially stronger and I had far fewer lower-limb corrections in class. However, was upset about how the teacher had reacted in front of everyone as it made me feel quite freaky. Wish my body didn't do these things at all and not my fault - blame it on my collagens!!!

Physio Update

Yesterday I had physio with M. He had stern words with me about my need to pace myself as I cannot keep going into these catastrophic fatigues which are a little bit fuelled by me and not stopping working or having time off. I know I am my own worst enemy, but also it is hard to stop me when I am really engaged in something - but I have taken on too much (writing) and that amongst other Autonomic Nervous System problems (e.g. needing to pee 9 x in one night) are all taking their toll. M did a lot of work on my T-Spine and C-Spine and TMJ. He said this could explain some of my symptoms and that my recent problems with ringing ears could also be explained in terms of the blood vessels in the area all being squashed. M has given me an exercise to do for my TMJ, in order to loosen my jaw but also some pressure release points to press at the back of my mouth.

It was a good and helpful session. We talked about pain, chronic pain and sensitised sensation and why it is my calves always end up firing pain signals during physio and at other times. M explained that my system becomes overloaded and the neural response ends up in the calves because they have been injured so often in the past.

M is seeing me again in the 3 weeks and suggested I stop doing the Arrow exercise for now as well as it is too much for my thoracic spine at present. M taped my T-Spine in an attempt to give the muscles some rest.

Functional Movement Disorder & Hypermobility Syndrome

An Extract of a letter to me from my Consultant Neurologist explain my Movement Disorder (snake-like movements in my spine and other twitches -e.g. shoulders)

"I think (her) movements are best characterised as a functional movement disorder. This is a rather poorly defined term, and one where synonyms like psychogenic imply very clearly a psychological explanation (typically based on thbe idea of an underlying emotional trauma). While this may be a cause in some people, the vast majority of people I see have physical triggers (physical illness, injury and pain), and I think this is a much more important and understandable way in which such learned patterns of abnormal movement can emerge. This is not to minimise the importance of psychological factors such as anxiety or depression - these can be important too, just as they are in more traditionally accepted neurological problems such as Parkinson's disease or tic disorders.


I have now seen a number of people with joint hypermobility syndrome who additionally have movement problems that seem to me to best fit within the "functional" category. I think that the common experience of people with hypermobility of chronic pain, abnormal problems that occur in HMS (e.g. bowel, autonomic bladder problems, anxiety and depressive disorders) act together to increase vulnerability to development of these abnormal movement patterns" Consultant Neurologist

http://www.youtube.com/watch?v=MuyJvWCIwDM&context=C484a208ADvjVQa1PpcFMA9MmI4mRcyfORhIj_lakOCKiYtbxDPME=

Fatigue and craving chocolate digestive biscuits!

Monday night after the disasterous bladder test was not good. Having gone to bed, totally wiped out, just after 10pm, I woke soon after 1am and then remained awake until just after 7am. I got up at 2pm and then had an early breakfast at 5am, but all day I all fancied, if not craved, chocolate digestive biscuits! I got to sleep so fatigued it was unreal and in fibromyalgic pain, which is just so widespread with needle points - this time in my knees as well as in my shoulders. I took a cocktail of the relevant drugs I need and did the Bowen sacral move on myself as my gluteals were so tight (not relieved by stretching). My sacrum "jumped" to say the least. I had another bath and went to bed. Gradually sleep came and an exhaustion beyond measure. I was so fatigued throughout the day I could hardly get about my flat. I texted my neighbour about obtaining biscuits for me, but she was going to be out until 8pm. She said she had some in her flat that I could eat - it was just too hard for me to physically manage two flights of stairs. I just had to wait - but when the said biscuits arrived I wasn't keen on them after all! I managed to watch a bit of TV before going to bed again at 9pm and remained in my bed until about the same time the next morning.

The next day (Wednesday) I had a bit of a codeine hangover, but did manage to go for a walk and obtain a few items locally. By today (Thursday) I had recovered again.

The fatigue that goes with Hypermobility Syndrome is just evil - but this particular episode I think was fuelled by the hospital fiasco and the stress of having to make an awkward phone call as well as teaching my first classes of ballet. Too many things on one day. I have been going through a very difficult time now for several months and things are really taking their toll.

Bladder Investigations - Disaster!

I was due to have some VCMG Bladder investigations (under X-Ray/video) done to measure bladder pressure on voiding - so I had to arrive with a full bladder and pressure was measured in a special toilet. The next part of the process was supposed to involve insertion of catheter in both bladder and rectum whilst fluid was introduced into the bladder and I had to say when I could first detect fluid in my bladder, to when it would feel full to slightly needing to go to really needing to go. Unfortunately I failed at the first hurdle when the doctor failed to insert the catheter. I was writhing in agony and had never known pain like it and promptly burst into tears. The doctor, who (was very nice) and said he did this all the time to children and had even done the procedure on himself was most surprised, but said that this is all information in itself. He noted my history of endometriosis as well as HMS. He said he would report all this back to my consultant urologist Mr H. After this I needed to go to the bathroom and was in excruciating pain on passing urine and was bleeding. I was in terrible pain and crying - I think from shock as much as anything else. The staff were fantastic and so nice to me. They said to take paracetamol straight away and got me drinking lots of fluids. Then took some ibrobufen. I managed to go to the bathroom again and it was marginally less painful. The rest of my body, particularly left abdominal, bladder area, adductor and back had gone into spasm and I was in a lot of pain. I was kept in the department a further hour before managing to leave. I felt exhausted, but then had to teach later in the day.

I am still in pain on emptying my bladder, but my bladder just isn't feeling very full, which is extraordinary given the amount of fluids I have consumed. My appetite has been poor for days and I am in a quite a lot of pain, hence writing this at 2.30am. I have just taken some codeine now so will hope this helps.

It now appears I will most likely require a full examination of bladder and urethra etc under general anaesthetic in a procedure known as a cystoscopy. I am going to contact my consultant's secretary to see if my next appointment could be brought forwards. I definitely don't feel right or myself since having this done and will seek advice as needed in the morning, if need be. The fact I am managing to pass some urine is obviously a good sign, but the pain I experienced was totally out of proportion for this type of test and could indicate some kind of blockage. I am sure it will all get resolved and sorted eventually. Not a great day!

Neurology/Neuro Science Appt - Movement Disorder

I saw the lovely Dr M today at the Neurology Hospital.  I was able to show him and his team of three colleagues the benefit of some of my movement patterns (see below). We talked about whether I did any of these things as a child (no). He tried,  unsuccessfully, to stop me doing this movement pattern, so was able to determine that it wasn't a movement tic that could be supressed with a combination of CBT + medication. I was offered medication but have declined it - although could have a stronger version of a drug like Diazepam for severe episodes of these twitches (e.g. like I had on a longhaul flight). The other option are injections - but again I feel I will wait and see what happens. Dr M is aware that I have a newer twitch in my left shoulder, but thought that my eyelid twitches might be due to a thyroid imbalance, so has suggested that this is tested. I suspect that will be normal as am sure that has been tested before.

Moreoever, Dr M thinks that this is all linked into my Hypermobility Syndrome and Chronic Pain syndromes and the way that they nervous system has been wired up. He certainly didn't think it was psychosomatic or "put on." He is aware that it started just over two years ago during physiotherapy. He has suggested I carry on with my Bowen treatment and Physio and keep exercising and all the good things I have been doing. As the myoclonus don't hurt me I said I am not too bothered by them as they mainly happen during treatment or when I lie flat. After my appt I was asked to take part in some research as my hands aren't affected by the movement disorder and the experiment showed that in those with movement disorders are much more accurate at assessing repetitive finger pressures than normals/controls. Although the trials are in their early stages, I thought this was fascinating - but obviously I have a heightened awareness of my sensorial feedback - perhaps because of my history of chronic pain and HMS. Anyway, all very interesting, and I have offered to help them with other research.

http://www.youtube.com/watch?v=MuyJvWCIwDM&context=C484a208ADvjVQa1PpcFMA9MmI4mRcyfORhIj_lakOCKiYtbxDPME=

Huge Fatigue + Global Pain

I had physio yesterday, but had already gone to the appt feeling "a bit below par" and with the brink of a sore throat and feeling very cold. M did a lot of work on my spine in general, my latest MRI scan showing the same disc bulge at L4/5 but nothing other than some normal arthritis and wear and tear. M asked me to show him the arrow exercise, which I did. He said I had been doing more with it than I should have been and reitterated what he did want to see. Then he gave me an extended version of the same exercise to incorporate gluteals. Perhaps that is what has caused the fatigue, or maybe I am coming down with something. More than likely it is just usual EDS symptoms and global pain with fatigue are gold standard symptoms. It is hurting me to type, so today will be a short one. Factor in some depression and mood swings and you get the picture. I have had enough of all of this. M said I really should be resting since I have been signed off for work, but I have so many other things to do I keep pushing on with all my other projects and writing instead. This leads to a complete crash. Pacing!!!

My Book on Hypermobility Syndrome!

http://www.amazon.co.uk/Guide-Living-Hypermobility-Syndrome-Breaking/dp/1848190689/ref=pd_ecc_rvi_cart_1

Insomnia

Another night of no sleep so far, despite medications. Thank God for the Internet then and the TV!

Keep on, keeping on

This blog is now almost four years old. The journey has been a very long one and seems far from over. I am presently very fatigued again - new movement patterns - even bowel muscles need to be re-trained so this is tiring me out. Sometimes I am just exhausted of always having to fight just to do things everyone else seems to take foregranted. I am weary of the constant medical appointments - two more tomorrow including the MRI to look at brain and the whole of my spine to work out what the muscular twitches are all about. They are getting worse again and there are more of them. This, apparently, could be a legacy of some anti-depressant medications from several years ago. No wonder then I am not over-joyed at the prospect of anymore SSRI drugs. The last quarter has been utterly appalling for me - I have been more unwell and missed more ballet and work than in the last 5+ years. Yet, I have so much to celebrate and despite all the odds have achieved an enormous amount. To all my friends and family who keep reminding me about this, thank you. I am listening, I am just not hearing.

I have found a poem that I wrote a few years ago. Presently I am here, revisited. I wrote poetry to help others who might be in a similar position to the ones I am sometimes in. Some of you might identify with this. I want to change the scene!

 Stuck

It is all busy out there, and I am just stuck in a well

There is light out there somewhere

All I can see are bricks, infinitely and cosy.

God! Do you think if I shouted anyone would hear?

I can’t stop crying.

The drip, drip of my tears are pooling around my feet;

There is not enough tissue to absorb their moisture.

I feel so excruciatingly sad, but I can’t tell anybody about it.

No one understands, and I can’t talk of it

I am just an act in a play that has gone on far too long

Change the scene.

Isobel Knight, Skin Collection (2009)

Biofeedback Training

Following having an MRI Proctogram, which shows the muscles involves in doing a bowel movement (except that jelly is used so you are not really being MRI'd doing a bowel movement), the results showed no prolapses or rectoceles which can be found in hypermobile patients. It did,however, explain why my bowels are not emptied as well as they could be. The reason is that my Transverse Abdominals TRabs and obliques are not working efficiently and that I need to let the rest of my muscles hang and relax forward. Biofeedback training informs a patients about their Proctogram results and then is effectively bowel re-education and results are individualised. Mine showed which muscles were not working and how I need to not hold my breath and try and wait until I am quite desperate to do a bowel movement before I go so that I hopefully need to go less often and also using the techniques to engage the right muscles "bracing" and using waist line muscles rather than holding my breath will be helpful, also relaxing forwards on the toilet. It will take a bit of time, but it could all make a lot of difference and mean an improvment in my constipation and properly clearing my bowels.

In Decline.....

Although I have held on for so long, some of the things that had improved  - e.g. sleep,  not waking at night to use the bathroom and fatigue are now all re-appearing and I am becoming symptomatic again. A recent virus, stress at work and now depression are all taking their toll. I once thought that I could become so well managed I would be symptom-free, but this just isn't the case. HMS is a connective tissue disorder that is inherited. The same tissues re-manufactor themselves in the wrong way. No matter what exercise I do, rest I take or don't take, the tissues continue to tighten or loosen at will and I symptoms re-appear. I am going to do some Bowen medial moves to rebind the tissue - but otherwise I just wonder about treatment. It is just so ongoing. I haven't had K's treatments for over a quarter, but I am now in decline and symptoms are reversing. This is sad, but inevitable and true. I will always have to work at things, but it sometimes feels such a losing battle. Also I am not sure who/how to trust anymore and never will again.

Not Sleeping Again

I am not sleeping again and it is very miserable. I had seen such an improvement in sleep and not needing the bathroom so much at night that it is very tedious to return to being restless, not sleeping, feeling manic and busy head and a real depression. This has been going on for several weeks and I have had to get myself up this morning even though it is a) Saturday, b) I am feeling jet-lagged and exhausted.

I had physio on Tuesday and M did more work on my T-Spine and gluteals and lumbar spine/sacral. There was minimal spasm and it felt good afterwards and still does.

I did a Pilates matwork class for an hour - first in ages and for once wasn't in agony or too sore or tired afterwards. This must be an indication of how far I have come.

Despite two near faints last Saturday afternoon, I had my BP taken at a doctors appointment yesterday and it was very good 127/72 with heart rate of 66, so very good.

The blog is fairly quiet because there is little of significance to report on here!

Physio Update 1-3-2012 Lower back/T-Spine

This blog has been rather quiet over the past few weeks reflecting that I have been coasting along, but moreover have had a virus which has been quite nasty. However, I am more fatigued again at the moment (post-viral fatigue) but I would say that I haven't been as fatigued as I used to get overall - so my endurance must be improving - although I haven't been doing as much exercise as I should.

Since my last treatment - the taping of the right ankle did lead to an improved proprioceptive awareness of  the usage of my right leg. I have been less bothered by the soft-tissue irritation, although it is still there at times.

My lower back went into flare up last weekend and although Bowen took some of the edge off the pain, I was also aware of a lack of usage of deep core muscles and the fact my hip flexors were incredibly tight. M was able to confirm this and also just how tight my right-sided Psoas was. M did some work to off-load this and also noticed all my spasms or 'Propriospinal Myoclonus' as they are more technically known. These continued all the while he was doing work when I was lying prone, which is more unusual, as they more usually occur when I lie supine. M also did some work on my thoracic spine and noticed "a lot going on" particularly at T7/8 where it was very painful and causing more spasms and an increase in calf pain. M did lots of manual therapy on my back in general and ended up giving me an exercise I need to do lying prone. I need to have my pelvis tilted into the couch in order to engage my deep core abdominals. I then need to engage gluteals before taking my shoulders of the bed and last of all, my neck. This means that all extension work is taken off my lumbar spine, thus putting that more into flexion and extending my thoracic spine and neck which needs extension so that the thoracic spine starts doing something. This was where K had intended to address in the end. M has asked me to try the exercise, which is a bit of a variation of the 'arrow' in Pilates with cushions under my legs, tummy to see how it goes. I need to do exercises for quality, not quantity.

It was an interesting session and I felt better after it. I am being reviewed again in two weeks.

New Physio

I saw my new Physio, M, today. It was quite hard for me to have to go through all my history all over again - M probably didn't realise that is very fatiguing for me also because it is so long and complicated. I forgot quite a few things as wasn't expecting to have to go through it given he has read my book - but all therapists have to take histories - it is just mine is two books worth! M had a look at my frontal posture and noted that I was standing predominately to the left - so after all this time and all my work with K this is still the case. He wants me to believe that my right leg is a good strong leg and to think of the bone-on-bone connections in that leg (as imagery to reinforce strength). He treated my right ankle as there is some soft-tissue irritation which had been impeding my plie but nothing significant. He decided to tape my ankle not because of the soft-tissue irritation but to give proprioceptive feedback to that leg and to encourage me to make greater use of it it. He says his next port of call is likely to be gluteous medius. I am always pulled/drawn to the left leg, but further up the body there is an almighty pull back to the right to counter-balance this. My body is still compensating for an injury that took place 30 years ago. This is so mad! After the session I became incredibly fatigued and now just feel quite depressed. It was hard because obviously M doesn't know me and I was (in the end) used to more "hands on" therapy from K and also because K knew my body so well. I am sure that M is a good physio and it is just difficult for me to adjust to someone new. Overall our intention is not for me to become dependent on more physio but for me to carry on managing as I have been on my own - so I need to carry on with all my exercise. I have been a bit lazy this week, that is for sure, but the snow is not conducive to exercise!

Management of Autonomic Dysfunction - Recommedations

For patients who suffer from Postural Orthostatic Hypotension Syndrome - 'POTS' or 'Autonomic Dysfunction' the following are recommended:

•       Maintaining a good fluid intake (plenty of water)
•       Taking adequate dietary salt
•       Elevating the head of the bed upwards at night by about ten degrees
•       Developing a good situational awareness of factors likely to be associated with lower blood pressures. These include warm environments, prolonged standing, pain, stress, large meals, exercise, hypotensive  medications, alcohol and factors associated with elevations in intrathoracic and intra-abdominal pressures (for example, coughing and micturition respectively)
•       Making use of physical counter measures such as calf exercises
•       Ensuring good general cardiovascular fitness in particularly trying to make sure that there is good lower limb muscle tone.

This came from my letter from Hospital of Neurology, Queen's Square in London (the doctor who saw me works very closely with Professor Mathias, a leading expert in Autonomic Dysfunction.

Better week!

Although last Monday I was in very severe pain, things had significantly improved on Tuesday and remained manageable again since. I had a Neurology appt on Thursday to review my neck symptoms (now very well managed) and 'Propriospinal Myocloneous' or muscle spasm/twitches. I was able to give Dr T the full benefit of these and have 'youtube' footage. He is now referring me on to another expert as he would like to see whether there is a cause or more accurate diagnosis. He has also requested that I have an MRI scan of my brain, cervical, thoracic and lumbar spine. I think the lumbar spine would be particularly useful as it has been ten years since that was last done. My new physio also thought this would be beneficial. Dr T expects there to be arthritis found and nothing much else of great interest, we hope. He is reviewing me in a year.

The rest of the week has been good - my energy levels remain good, I am generally sleeping well and have been jogging a few times and did ballet on Tuesday. Just had a really lovely weekend with my family.

http://www.youtube.com/watch?v=MuyJvWCIwDM

Back in Severe Pain

I am not prepared to contest my last posting - indeed I followed my own advice, and by bed-time last night my pain had generally zeroed. By 4am, things were massively different. I had a pain score of 8+ and couldn't sleep. I put on my head-pad and after much twisting and turning took 1/2 codeine tablet - only half as had to to be up for a medical appt. If I could have stayed in bed by the time I was drowsy enough to sleep, I would have done so.

Upon getting up again, had a hot bath, did some gluteal stretches (very tight!) and assessed movement function. It is easy to see why many medical professionals would dismiss someone who can "easily" reach into full forward flexion (although it hurt). Spinal extension also looks "easy" but hurts significantly, and side flexion was agony and this is where the worst of the pain is on actual movement. rotation wasn't too great either. I look very lordotic and have an egg-shaped area of pain in my left illiac fossa, upon deeper palpation. My guts aren't great which won't be helping, but I think the abdominal pain is more referred. Sitting is painful and feels like a drill is going into a specific area in my my lower back. I feel miserable. I can't cope with this anymore. I am exhausted. This flare up has now gone on over ten days. Enough is enough. Just can't function. Just wonder what the point of being is right now. Brain is as good as useless. Really fed up, in case you hadn't realised.

Exercises does help pain!

My last post was quite dark, so I want to reassure all my readers that I am OK. Writing has become one of my coping mechanisms which is why I do so much of it. However, even I have days when I can sit at a computer for hours and only write half a page just because I want what I am doing (e.g. for my new book) to be perfect. I am also very easily distracted and need absolute quiet to work well, especially when I am in pain. The higher my pain, the more stressed I become, the more "aroused" I become -e.g. by noise, things that startle me, the less I am able to do. I work in a glass office and find this incredibly difficult, alarming and impossible to concentrate well. I get interrupted all the time and if I am in pain this just increases my pain and makes it feel like I am working with 100 road-diggers. At home I have much more chance of success because it is usually very quiet here and I am much more comfortable in peace and quiet and therefore in less pain. It is all logical really.
 
Exercise does help pain. I ran yesterday and then did an hour's swimming - 30 minutes of constant widths followed by ballet and other water-resistant exercises. I was so tired by 9.30pm, but went to bed soon after 10pm and was too tired to sleep. I woke several times and then the pain increased a lot so I took some Dihydrocodeine and then had a bad codeine trip!

My lumbar spine is better than it has been in the last few days, but there is pain and I have had referred pain in my right calf (for a change - it is usually left) which is isolated, but is referred from my back. Additionally I am having trouble with plie on my right leg because something is "stuck" at the back of my right heel. This is only occasional but will need a more permanent fix. I had taped my back, but that has gone now and I will go for a walk in the park (it is a lovely day out) and run today. The exercise does help my mood as well as my pain. It is really perverse contemplating exercising when in pain, but it is essential. I also did some rescue exercises yesterday and used hotwater bottles. I did Bowen as I went to bed. I am about to do more book writing!

Life beyond the horizon

I sometimes wonder if I was very bad in my previous life. Anything that might just explain why I am continuing to suffer so much in my present life. No matter how much I try, what exercises I do, how hard I work (at work), it so often feels as though I get punched back in the face. Today is one of those days. I wonder how much more I can take of this. When I am well (as for anybody) it feels fantastic. No one should take good health foregranted. It is a real gift, and just lately, I have had a taste of it. So it now feels so bitter to be in so much pain I want to vomit, so much pain I want to curl up and die, and in so much pain I wish for someone to plunge a needle in me to end the suffering, just as I was able to do for my dear cat only a few weeks ago. This time, there could be a simple solution. I could "just" be suffering from a kidney infection. Since my urine was tested postively for a UTI, as it always seems to every single time it is tested, (last week in urology was no exception). I could be 'measurably' ill with a medically explainable problem. However I more than suspect it is not. That although there is severe pain in my spine, loins, central abdomen and illiac fossa (right and left) no one will help me - the doctors might give me some morphine, but no one will really "do" anything, until the next time, and the next time and the next time. Maybe I have just become cynical. I have so much I could give and do. I have achieved so much but could do infinitely more, but I am tired. Exhausted. Fighting at times with a force that is bigger than I can cope with and hospital upon hospital appointment and being sent for more and more tests because there are more and more things that are wrong. I want to get off this merry-go-round of hell and just float off into the sunset. Not in this body, but a long way from it. Humans can't be "put down" - but I wish I could. That would be humane. This is not humane. I will wake up again and want to fight, but at what continued cost to me and the NHS? I can contribute to the lives of others and actively want to help and support others, but I have reached my lowest ebb because I can't see things ever really changing. Ever so once in a while they do - to tease me, and then I get this. Again. I don't want to wallow in self-pity which is why I keep trying to work around this condition write about it and offer help to others. It is devastating that I have lost K and it feels hard to keep walking forwards, one foot in front of the other, but that is all I can do. I rarely get so incensed on here - but pain  is highly emotive. Tomorrow might be a different and better day. Like many others with chronic painful conditions, I will keep plodding on. I just hope there isn't a next life.