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.

Visit to the Neurological Hospital - for POTS + Hypermobility

I had an appointment today at the London Neurological  Hospital (attached to UCLH) to assess me for Postural Orthostatic Hypotension Syndrome (POTS). My first blood pressure lying down was something horrific like 191/158. Upon standing this dropped to 132/90. My blood pressure was very high, but typically dropped on standing, as is the case with POTS patients. The outcome is I am being referred for 3 days of intensive testing which might require admission to the local patient hotel - although I suspect I can come home as I am not really that far away. They will look at everything including bladder/bowel and blood pooling and they are going to look at hand-sweating as my hands are often damp and clammy. It all sounds fairly radical and I suspect I am useful research data for them since there is not that much that can be done if one's Autonomic Nervous System (ANS) has a mind of it's own as is often the case in hypermobile patients. Anyway - will see what happens when I go for testing. It all sounds quite interesting - I get my own scientist for about 3 days! I think it will be worth going just so I can write about it for the sake of others, even if I don't benefit. Tomorrow I have a bladder appt - it is all go, go go!




On another note - did a ten minute continuous jog with no stops. Now need to push for 15. Have come along way since only managing 90 seconds!

Happy New Year 2012!

Another New Year and a chance to start afresh and full of good intentions, starting with an hour long walk with a ten minute run factored in for good measure. Yes! I wasn't able to manage more as I had been in bed with flu on and off for the past few days, so did what I thought was realistic without going too far. I even ran for the bus yesterday which is becoming a regular thing for me to do now. I am hoping that by the end of of 2012 I might be able to manage to run for 45 minutes or so. I have a long way to go yet but if I keep managing doing 2-3 jogs per week I might be able to build this up. Other considerations for more cardiovascular work involve becoming an organ donator - or cyclist and then of course there is swimming. Anyway, I am full of good resolve and was just starting to get into to some good habits at the end of 2011, so here is my chance to build upon them.

Further rehabilitation goals involve resolving bowel problems (left side very painful) and bladder issues. If these and sleep are fully dealt with, I would consider myself fully rehabilitated. It is difficult with something like endometriosis which is another separate medical condition and not exactly related to HMS - although there is considerable symptom overlap.

I wonder that if I conquer all my symptoms whether I just lose the status of HMS to 'Hypermobile.' I wonder with all my chronic pain and symptomatic overlap whether this is possible.....? I will always have faulty connective tissues, but can they be fully managed and tamed???!!! Not "Taming the Tiger" so much as "Taming the Tissue!"

Christmas 2011 was better than 2010!

I have to say that this Christmas was much better for me than 2010 because (apart from IBS problems and subsequent back pain), I was physically much better and fitter. I was able to manage to do so much more with my nephew (who is now 2 and gorgeous) and hold him and not suffer such bad pain, fatigue and other repercussions. My endurance as improved and definitely my strength. The release I had in Bowen continues to make a huge difference. All the physio and exercises have paid dividends. Happy Christmas!

Lumbar spine hyperxtension + Pain!

My lower back is really sore and feels "sprained" in my disc prolapse (L4/5) and hinge (area of hyperextension). I have tried Bowen but I have been doing a lot of exercise and so that area and even my abdominals and shoulder girdle feel very sore. My back is better during activity than in lying - so night-time is worse and the last two nights have not been good and I have needed to resort to codeine. In addition my guts are not good so that is probably putting more pressure on that whole area in general. It is days like this that I am going to miss K who would have known exactly what to do very quickly, purely because she knew my body so well. It will hard for me to ever trust anyone again who can so abruptly terminate treatment. I hardly have any energy to explain to someone else how to work on my body. Bowen is usually good, but it is hard self-Bowening this area as there are moves needed at the back of the knee and hamstring and require further contortionism.

I am trying Diclofenac and paracetamol. I have been doing copious gluteal stretches and when in the water and swimming, lots of pelvic tilts and twists. Fortunately there is a physio at work tomorrow, so I might seriously consider  it, or acupuncture/Tui Na on Wednesday. I just don't want my back being in a state over Christmas. Also it feels like it is "about to go" in a more serious capacity in certain postures and is very clicky. I always get more anxious and nervous about my lower back flaring up because it has been so bad in the past. I am doing some Pilates and ballet later, so hope that is cathartic.

Cardiovascular work and Endurance - Update

My endurance and cardiovascular fitness are both improving. I managed to jog for 15 minutes with very minimal walking breaks. Not so long ago I was still only managing about 6 minutes, with 1.30 continuous. This is much better. I had some left anterial leg pain, but it is only because I am still not going through my feet enough - also I prefer running on grass to concrete and don't have the best trainers in the world.

I was the only person in the Hydrotherapy Pool this afternoon - I did about 15 mins of continuous widths before I asked the life guard if he could make the water shallower so I could practice with no floats, but at 90cm I was still feeling too unconfident. He was kind and gave me some advice and made me swim with a float with one arm and then the other, holding it like a sandwich. I still felt too freaked out to do all he was suggesting I try and I am still not really breathing much at all - although I am when I swim with the dumb bells. Half way through the session the guards changed and the other one told me how much harder it is to swim with floats compared to without - there is so much more resistance, so I am doing well to manage several widths at a time.

Anyway, it is clear that what with now sleeping right throught the night and having no POTS symptoms anymore and a normally functioning neck, this aspect of my treatment is now giving me improved endurance and hopefully I won't experience fatigue much more - or only very minimally. I had back pain today, but I coped with doing some stretches and the exercise has made it all feel much better. There are no short-cuts in managing hypermobility syndrome, but I am considerably better since my release of last week. I would like to see how long I remain POTS and fatigue-free! Happy Days!

Update since Traumatic Release from Bowen

Since the spectacular traumatic release that I got through Bowen Technique, I have had an extraordinary week. I have slept right through the night, every night more or less, and I have been out drinking several times - so this is a huge improvement. I feel energetic and totally "in my body." I have coped with a very emotionally challenging week, and managed very successfully a big event at work. I look quite different, alive and sparkly. I have had lots of energy to go out. I have done lots of exercise. I am a new person! http://www.bowenworks.org

Ballet Today

I did 'Pilates into Ballet' and there seemed to be no major problems. T said that my head alignment as I am going to do a forward ports de bras wasn't correct. She explained why and then I was able to do what she wanted with no problems. I think I had been compensating incorrectly in this movement for ages. I should now be able to do it properly now my neck is better.

I had a tiny bit of dizziness at the end of the class, but we only did a bit of jumping - but otherwise felt strong, in control and very centred. My knees are quite hypermobile at the moment, but I am otherwise managing them, though first position and ronds de jambe still present a challenge.

I am supposed to be being videoed next week - so will be interesting to see what I look like now.

I did not eat enough again today, so had to buy an emergency snack about an hour before class (a healthy nut bar) but I need to eat properly as that is just foolish.

Unbelievable 'Traumatic Release - via Bowen Therapy for neck problem

There is a way of doing Bowen Therapy which works differently to conventional Bowen although it involves the same types of moves. It is called 'Mind  Body Bowen' and involves the patient charting symptoms and feelings as they go they appear (or not) in the body. It was developed by Margaret Spicer and Anne Schubert, two Bowen instructors in Australia. I had attended their course in c2007 and had the most amazing traumatic release witnessed by 34 people. It took two separate attempts, but I incredibly went through my own birth. I experienced this both as my mother and as myself. Since that huge release I felt calmer and more in my body than I had felt before until that time. I had several Mind Body Bowen (MBB) sessions with my Bowen instructor, Nicola Hok, and had some smaller but still hugely significant releases - one involving a water episode and another relating to my shoulder range of movement appearing, but it strongly linking to 'being patient' about things. I have conducted the work with varying degrees of success on a few patients, but have experimented with the work on my own body at various times. The potential danger of this is if the release is huge and there is no one around to talk to, or if there is no story reached in conclusion about what the body throws up. However, last night has blown me off the planet in the most spectacular fashion and might mean my neck trauma is now resolved. Here is what happened:

"Last night I was feeling very anxious and couldn't sleep. I decided to do MBB on me. Did Moves 1 and 2 and not "very much" happened, so thought it was going to be a very quiet session (sometimes I fall asleep). After moves 3 and 4 it all kicked off. Left hand was flapping about. left little finger very twitchy. Spasms on left side of the body, particularly in T-spine. I was often either breathing very deeply, very fast, or not at all! Pulse rate was fast. Eyes fixated and staring. This must have gone on for about half an hour, and I then moved slightly and was then at an odd angle. Right little finger was twitching, but spasms on left continued and I started making strange sounds. As I was being pulled further around to the right, so left pulled around, I started breathing more strangely again, with deep breaths, fast breathing, or none. I was making more strange noises as if gasping. Then, I felt a huge pull around my left neck and was completely gasping. I was choking and being strangled. This happened twice. I was very scared (in myself at the time), but managed to free myself and pull myself away. I was trying to get my hand to move the object. The realisation was immediate and obvious.  The umbilcal cord was caught around my windpipe and left side of my neck. I managed to move it myself (possibly hence the hand flapping). I was near to death twice. My neck feels sore (SCM) but I was going through this whole thing for about an hour. There is no doubt in my mind what I went through. I am sitting here now having no problem doing forward flexion. If I am right about what I have experienced and document, it might mean that things improve."

Today I feel much calmer in myself and completely 'connected'. I have got normal neck flexion, no dizziness,  no pain, no headaches, no temperature or pulse rate changes. My head looks straight and not rotated or in lateral flexion. Only K would be able to verify the change so will see if she notices. I will obviously have to see if this holds for at least a week with no repercussions, but if so, it could explain why physiotherapy had not ultimately managed to rehabilitate this aspect of my neck. I am hopeful this could be the final end of the matter.

People like Peter Levine have done substantial work on trauma release and PTSD and so I am hopeful that with some further help from Anne and Margaret in Australia, I will be able to document this in my new book with some rational explanation of how and why this happened.

Looks like the fact I almost died twice during my birth has contributed ongoingly to held trauma. If I have really successfully released this my life should now dramatically improve. I managed another jog this morning and I have been able to re-create a new blurb for my new book. Onwards and upwards!

Cardiovascular work and Endurance for Hypermobility Syndrome

I have been swimming and jogging twice this weekend. I managed to get around the park once completely without stopping and then for a further three circuits with tiny amounts of walking only. This is the best I have managed so far. Tomorrow I need to go around 5 times, at least once without stopping at all.

I went swimming this afternoon and did another good many widths before then doing additional upper body work and some ballet in the pool. It was a good and enjoyable session and I have also not worn my cervical collar today at all, and I feel OK. I am beginning to manage a little more forward flexion, and I think this is owing to the eye exercises that K had given me - I didn't realise how subtle that movement was, but it is enough to start the beginnings of real forward flexion, hopefully without disaster.

It has taken me a long while to begin to understand that if my cardiovascular system works better, therefore I have a more efficient heart (pump). all the tissues will become better oxygenated, and then I will start to have more sustained energy and improved endurance. Now that I have accepted this I will work really hard to build on both this and the legacy of K's work.

I am also starting to understand other things I can do for myself if my back hurts - for example gluteal stretches. I am now guilty of not doing enough stretching, so this will be important to retain my usual level of mobility.

I have two goals for the new year 1) to find a jogging buddy and the 2) to have more swimming lessons so I can really swim properly without any floats. My confidence has improved in the water, my muscular control really has and now I just need to be brave enough to know I can swim on my own!

I am not going to have any physiotherapy this week and this feels a little daunting, but OK. I am sure I will manage. I have self-help tools, exercises and stretches, and medication, when needed. I can also use things like my neck collar to help. This last aspect of my rehabilitation is all about gaining self-confidence and independence. I am also my own therapist and can do work on myself, as need be.

I will miss K, but it will also be great to be able to show her that nothing she ever did with me or taught me was wasted and that I have taken it all on board, eventually!

Physio

After treating me for 3 and 3/4 years, which is magnificent service, K has said that she has now taken me as far as she is able to. In the main a lot of my rehabilitation is now complete thanks to her, so the remaining issues that need a final resolve are the neck and POTS symptoms. I am being seen by the POTS team in early January and then by the Neurologist again in late January. Another physio is now taking over my case and knows me already and what has gone on thus far. We have discussed the need for 8-10 sessions for now to conclude neck and shoulder work as she too agreed that otherwise my rehabiliation is nearly complete. Neither the new physio or K could do the final aspect of the work which is the critical endurance and cardiovascular work. Only I can do that for myself. If I can manage to do that, then C-Spine, POTS and fatigue will all eventually improve. I am very sad that K needs to leave me at this point, but also respect all that she has done and will always remain grateful.

C-Spine X-Ray for Cervical Instability

I had my cervical spine (neck) x-rayed on Wednesday and am now awaiting the outcome of that. The x-ray is to look for 'cervical instability' at C1/2. I did a profile pose with my neck at a normal angle, then in extension - which freaked the radiographer out because I could tip my head so far back. Then in flexion which was much more restricted. To be quite honest, I doubt that they will find anything as I suspect it will end up being due to ligamentous laxity, but the results will tell. In the meantime I have a new and better collar, so have had far less POTS symptoms and I continue with all physio specific exercises.

Measures - calves and weight

I am now about 67kg. I admit this might be because I have hardly eaten for two days owing to emotional stress.
Calves  - L = 40, R = 38.5cm - this is so good and they have both gone down, particularly left.

Swimming and Jogging and Walking

For various reasons (it is too cold, too dark, I was too tired, 'coldy') I haven't done much exercise in just over a week, so I did a week's worth in one day which I am bound to pay for tomorrow. I did a jog in the park and then went for a walk. In the afternoon I went swimming. I did 15 mins of continuous widths then did a load of "ballet" and neck/arms specific exercises before doing another 15 mins of widths. My next step has got to be to doing this without floats and having some lessons. I am planning on both going for another jog and swim tomorrow and on Monday, a jog and then Pilates and ballet. I have got to get consistent about my exercise regime, as it is not good enough at the moment!

Arm stretch, POTS, Fatigue + Hypermobility Syndrome

It has been a big week for me. My beloved cat had to be put down on Monday. I had suspected he had a cancerous growth, but the harsh reality of the determined diagnosis led to his death, but it was peaceful, albeit horribly sad, but the right thing for him. I was my birthday on Friday, and I wasn't sure what would happen this year, as my last few birthdays were a disaster. This year was different, and I had a very lovely day indeed, helped by great generosity and kindness of my work colleagues, especially K. On Saturday I had my grandmother's 90th birthday and managing family dynamics and tensions even though overall it was a actually a lovely occasion.

Last night (Saturday) I had the desire to do a big thoracic spine stretch and although this sounds no big deal, I stood against the wall and put my arms above my head and stretched them up and against the wall until my finger tips reached the ceiling (I live in a basement flat). This was the first time I had seriously managed this stretch without having a spasm attack or because those T-spine muscles were too tight to elevate my arms because of the pull from my neck. The stretch was long and and has definitely ended up being neural because I now have pain down both arms and woke this morning with a huge fatigue. I also did some neural leg stretches and gluteal stretches (left side much tighter) to help with my lower back pain - this did help.

Last night, I was also had some POTS symptoms and nausea, but had had a very long time without the collar on, which probably hadn't helped. I slept well, waking once, but woke up feeling totally fatigued with pain in all limbs. This isn't great as I have a lot to do both today and tomorrow. My body doesn't make allowances for this. Thankfully I booked Tuesday morning off work to rest, so can have a long lie-in, if needs be. This is good planning on my behalf, but need something now!!!

Eyes and spasm!

I didn't expect this - but I decided to do my eye exercise lying down in bed - the exercise just involves following my finger up and down and sid to side and then bringing my finger towards my face. It is all about eye-tracking. I started to "spasm" and "twitch" all over the place from trying the exercise lying down. This didn't happen when I was doing this standing.

Running - the pitiful truth

I timed myself running before I got out of breath today and managed only 1.28. I then did 6.40 altogether of running and walking, trying to run as much as I could. I am going to have to do this at least twice a week as this is very poor.

Lower Back - Range of Movement and Trunk Rotation

Yesterday in physio, K was very successful in giving me hugely improved trunk rotation - I was like an owl by the end of the session. Much of this release seemed to come from the work K did on my pectoral muscles. This has held well and I have just done my exercises and a ballet class all of which involve spinal rotation.

What has not improved, unfortunately is my spinal flexion ROM and I have still lost some ROM in my spine and cannot achieve quite what I would like to be able to - but a) I am hypermobile and used to a particular ROM and b) I am a ballet dancer, so expect a certain ROM as well. In addition, my right leg (usually the most flexible) seems very restricted in 2nd and I couldn't get my normal height in grand battement - but I am fussy!

However, I danced again with the collar on tonight and we had some quite difficult battement fondus and adage to do and I think I was dancing with control and good use of core. This is an achievement in itself. Pirouettes were good, allegro, not great. I seriously need to address my feet in allegro, but my cardiovascular fitness, or lack thereof is now holding up my progress in jumping work. K thinks I should be able to run for 20 minutes and be able to hold a conversation. She hasn't seen me running for the bus which usually leaves me looking like I am going to need resuscitation. I have requested a "running lesson" when I can safely manage 5 minutes continuous running. This could take me some time. I must now factor in at least 2 runs per week.

Speech Therapy in Physiotherapy for TMJ problem

My latest physio session was interesting. K has been working on my TMJ for sometime and this week noticed that my right upper lip was not moving well whilst observing me talking. As a result she then did some manual work on me before then asking me to count to twenty. First I thought this was rather odd, but then I realised what she was wanting me to do. Basically when I talk, I do not articulate very well with my facial muscles or really use them  much at all, so this has now become a new exercise - Speech Therapy in Physio! Another part of K's multi talented and multifaceted approach with me. I must say I found it all rather embarrassing and was rather self-conscious about it, but now I am even practising it on the bus. As K said, "Diction, Darling." This is all actor stuff!

Just been swimming - good session!

I have just had a really good swimming session. I managed the most I have even managed (so hope that I am not too fatigued tomorrow). I did about 30 minutes of continuous widths alternating with crawl and breast stroke. I still prefer breast stroke because of the natural hypermobility of my hips doing 'frog legs', but this is much harder work for my upper back and shoulders. I find the rotational aspect of crawl more challenging and the parallel kicking - still it was great for my endurance and cardiovascular fitness, which was K's aim of sending me swimming.

After 30 mins, they put the bubbles on as it is a Hydrotherapy pool and so I used this time to do some targetted exercises for my upper back, neck and arms and then some ballet exercises as it is so good doing them in the water. I then went back to width swimming for the final ten minutes of the session. I did a little work lying on my back, but that was more for relaxation.

Anyway, I wanted to post something positive on here!

POTS Symptoms/Vascular and Headache + Hypermobile

I don't know how or why I am still on a computer given my existing symptoms. I could be cut in half and in pain on the left-side of my body from the top of my head and down the whole of my left-side of body. I have extremely cold hands, but my legs are warm and normal temperature. I have am "locked" solid and as is if it is squeezed on the left side of my head and neck and into my TMJ and have been seeing "stars" but not of the 'I'm a Celebratory get me out of here' kind. I was fine in the morning, although I had woken up at 4am with a busy head an anxiety about various things and then fell asleep again and struggled to get up for work. I feel very sick and nauseous and so tired of this whole situation - this is with the collar on! I had a late lunch at work as had been in early which might have made things worse. I am quite low in myself and was supposed to be going out for drinks with people after work, but just not up to it at all. Work was a struggle in the afternoon as it feels my brain is separated from my body and very hard for me to think through anything at all.

I have done my physio exercises and now taken more antisickness tablets and diazepam. I did some Bowen at lunch which gave a brief period of relief. My arms are very symptomatic and just so cold, even though it is quite mild.

One other new thing I have been trying this week is use of a SAD lamp - but it is too early to say how this is helping or not.

On the positive side - had 2 much improved days in the week with no fatigue or symptoms, but this is unbelievable. I do with this would all go away.

Finally, my bladder is affected in that there is a delay in me wanting to pass urine even if I need to. I then feel like an electric shock going down my back and then I can release my bladder. It is a really strange sensation. Running water seems to help!

I have been trying new memory foam pillows and they are quite hard, but think they are giving my neck more support - still quite a lot going on.

Hoping to swim and do a bit of a run this weekend and also to actually do something nice and normal like get out for the day to see a friend!

More book writing is also on the agenda!

Wearing a Cervical Collar during a ballet class!

I just did one of the best ballet classes I think I had done for a very long time, wearing a cervical neck collar!

Last night I had done class (without a collar) and really struggled with nausea and changes in heart rate and blurred vision, but nausea was most over-riding symptom - I had to keep checking where the bin was! These are POTS related and also seem more than likely to point to the possibility of the suggested cervical instability at C1/2 (all yet to be proved).

During today I did suffer extreme hand/arm coldness even with the collar one, but this improved after doing some Bowen (treating someone else!) and having had lunch.

I wore the collar nearly all day. I hated it. It is really hard to explain why I am wearing a collar for a non-acute injury. This evening I decided to do ballet in the collar just to see what happened. I took it off for a brief spell before class to do my physio specific exercises. I then decided to wear it and it was most interesting. I had much better control of my body in general and less pain and tightness in upper traps. I had no nausea (although as a precaution tonight I took a precautionary antisickness tablet). I had no dizziness, or change in heart rate and no visual problems. I felt much more stable in my body and was much easaier able to access my deep core abdominals. I seemed to manage most of my range of movements, although I still have an issue with hamstring tightness and hip tightness which I will be taking back to K (and right ankle). However, otherwise I did a very good class which had some very challenging adage and I even found pirouettes easier.

There is no longer any doubt that it is my neck instability that is causing all these extra symptoms. I would welcome K and H's thoughts following my collar experiment during ballet class. T had to rush off after class, so couldn't check what she thought.

Horrendous Fatigue and Global Muscle Pain

Well, dear reader - this is just unbelievable. If I could find just one muscle in my body that doesn't hurt today, it would be a miracle.

Yesterday I had a good physio session with K. I had come in a really good mood and was wearing my collar. I did a bit of shopping afterwards (kept finding nice expensive dresses I would have loved, but couldn't afford). I then came home and did a short (5-10 min jog/walk) round the park, mainly jogging. I then went swimming. Unfortunately the hydro pool was closed because it was broken.  I did have to swim in the main cold pool, but kept going and did what I'd usually do in the small pool and had less swimming area than normal. I came home via doing some food shopping and ate. Fought to stay awake for Casualty - which I enjoyed because I love Dr Dillon Keough and then went straight to bed. Exhausted beyond measure. Woke at 8am, more tired than when I went to bed. Have just got up to try "getting up" and had a bath which is one of my pain tactics. Took some Diazepam and had some coffee, but my eyelids are drooping again and my bed is calling me back. I can obviously do "nothing" more physical until I have had at least 5 days in a row without collapsing in severe fatigue. I have got the beginnings of a sore throat again and continuously have early signs of infection. The pain is just dreadful. I have a book which needs writing and a whole other pile of stuff, not to mention work I need to do this afternoon and God forbid something nice like visiting a friend. I wonder how I have any friends left. No. Today is stay in bed and or watch TV. My arms are now hurting so am going. When am I going to get better from this? Patience is not one of my strongest virtues. If I was giving advice to a patient I would be telling them to go and rest. Now I must follow my own advice! Good day and Good night!

Rhematology Review and Physio for HMS going forwards

I saw my lovely Rheumatologist yesterday. He would like to review several blood tests as one (in terms of muscle function) was slightly abnormal. The priority, however, is neck function and the instability in my neck which is resulting in such (at times) severe POTS symptoms. I need to obtain some cervical x-rays of particular points which he will request from my GP (to arrange). Until we know more from the x-rays or for ruling other problems out, H has suggested I wear my neck collar subtantially more to give the area support, and he wants me wearing it 12-16 out of 24 hours - so quite a lot! This is going to be quite a challenge from me to explain given that I am Bowen Therapist and work in a health environment. The other challenge which I experienced the last time I was wearing the collar for any length of time was that other therapists -e.g. osteopaths thought that I was just making my neck weaker, but actually we need to turn this concept on it's head (so to speak, no pun intended). Wearing the collar is allowing the muscles to rest and regenerate and when I am not wearing it I can do my physio specific exercises to keep working on the muscles. In addition I already noticed that when I walked (with the collar on today) my head posture was obviously better and I could track my eyes better. When the collar was removed I had a better idea proprioceptively of where my head was and should be, as it is presently too far extended and rotated. It will be interesting to see how things go with my neck and whether this in fact speeds progress up. However, anything is better than these continuing symptoms.

In addition, further blood tests will be done also to look at white cell counts which are often raised in me and when I present in A&E they always think I have  UTI because there is always indication of infection. H also wants my bladder investigated and then to have the Tilt Table tests for POTS. Finally, a diagnosis may be made of Fibromyalgia, but it will be a last resort - although I am aware many of my symptoms fit. In the end, it is how these are managed that is crucial and there is some possibility of trying some new medications for this also.

It was a very good and positive appointment and it will be interesting to see how the neck goes with all the increased collar use - oh, and obtaining a proper foam memory support pillow, and the results of ongoing tests.

Later after a very full-on physio session I went for a short jog and then swimming. Considering how fatigued I was two days ago, I have done well. Had a very good sleep last night and think I will be on for another good one tonight!




He is also interested in looking at other blood tests to see why my white cell counts might be raised.

Severe Fibromyalgic Flare up with Hypermobility Syndrome

Although one of my rheumatologists alluded to me having Fibromyalgia (FM) I tried very hard not to take this as an emotional hit of another diagnosis, but tried, as K suggested to accept it as a description of symptoms going on. I am in one of the most severe flare ups I have possibly ever had in relation to pain and FM+HMS. I am so fatigued I had to sleep between the people I was working with today. I had to take a taxi home. I have had two long hot baths in less than four hours and taken Diazepam, Codeine, Oramorph and anti-sickness medication. I have tried stretches, doing my physio exercises, relaxation, watching TV, but the pain is searing, sharp, and in nodules in my neck, shoulders, hips, calves, hands, arms, feet, virtually everywhere. I feel so isolated. I just want someone to hold me. I have cried, I have held my cat. I have eaten chocolate. I feel under huge pressure to be at work tomorrow because I am the only person on duty in my department. I am being seen by my Rheumatologist because he is visiting my place of work tomorrow, so that is the best reason I have of going in. I have no brain. My concentration is terrible. I cannot follow instructions. I forget everything. I am useless. Maybe I am human, or just trying to cope with an exceedingly difficult situation. It has been my aim to try and help others. I need  help from people, but it is pathetic asking for help with shopping. Last weekend it took me half an hour to change my duvet because my arms were too tired to manage the task very quickly. I feel too proud to ask for the help I need and don't want to bother my friends. Worst of all, I am sure that K is absolutely sick of me, but I need some help and a priority for now has to be getting back on top of my pain and severe and relentless muscle spasming. I am depressed because this is such a huge flare up. The Isobel I know wants to keep on beating this situation so she can continue helping others. I am sure I will be able to do so again in due course.

Words Unsaid - Cogntive and functional difficulties + EDS3 (Hypermobility type)

There is so much I want to say to K and never enough time. I can blog in the week and write in other ways, but it feels like I have to box myself up into one hour in the week, which is fine if things are going well and “I am well,” but lonely and isolating if they are not. The story is all so complicated that it is tiresome having to explain to others what the problem is, not that they often understand. Even the simple common cold becomes more complicated causing additional fatigue and a peak flow which is normally about 600 (the reading of a typical male) deteriorates to 350 which would be normal for a female, but feels hugely abnormal to me.

My behaviour is strange. I have periods of acting like I am experiencing caffeine overload, even if I am not. I am usually articulate, but have difficulty explaining situations with clarity or misinterpret information and/or instructions. This results in confusion and difficulty for those around me.  It is like having a screw loose – but I am not stupid. I feel lost in my head and the wiring is all wrong so I cannot get the right information out. I am frustrated because my behaviour can be either manic, or on the reverse that things are ‘foggy’ and moving so slowly, as though I am a long, long way away, like on a old-fashioned long-distance phone call.  Both situations result in difficulty for me in communicating. The former, manic state because I act without thought, irrationally and as if I am all over the place. The latter state makes it hard for me to understand anything unless you speak to me as if I am very stupid and very s-l-o-w. I feel trapped in my head because in neither extreme state can I communicate in a moderated way. This is very isolating and upsetting for me, and difficult for those around me to understand. I am not sure what I should do to best support either of these situations, for myself, or those who are close to me (personally and at work).

Normal people don't react in quite this way!

Last weekend I came down with a cold. Big deal. Lots of people have a cold at work and in the country generally. It is normal. We all get several colds a year. However, having a rather unstable head/neck and T-spine have caused me additional compliations. The sore throat I started with was all at the level my neck is blocked at. I came out with a cold at the weekend, and thought that I was dealing with that - despite having additional nausea and feeling 'a million miles away' K treated me on Monday and did a lot of work on my TMJ. She re-assessed my 'Walking Hands up the wall exercise' and I could do that. The new aspect of the exercise included removing one arm and then the other arm and then both arms off the wall in attempt to keep my head in a stable position. On Monday through to Wednesday I had just about managed that, though head was moving when both arms came off the wall.. Today I cannot even walk my arms up the wall - as I have butterfly spasms going on and a complete lack of control. I am in nodules of pain systemically, especially upper body. These are fibromyalgic points. Most 'normal' people would not have this, particularly, and I know this is not a flu (where pain would be a factor in normal people). I am also severely fatigued, with muscles overworked everywhere.

On Tuesday evening, although I did not go to ballet class, I did some ballet at home and my body felt like chewing gum. It was extraordinary and was just so fluid and lovely - but I don't think there was much strength. Yesterday I spent most of the day in bed, went to bed for the night at 8pm and was exhausted beyond measure. Today I am so weak that even typing is hard. I can hardly walk, and no deep postural muscles are working. This is definitely not what happens in 'normal' people. I get so weak so quickly. I am more and more tired and can do even less. I am still housebound today, but struggling because I am running out of food so will either have to make an effort to walk to the local shops - but I may as well be walking to the moon because walking to the end of a corridor to check my postbox is far enough.

On top of the pain and fatigue we have a nasty chest. My normal peakflow supersedes males of my age and can be at least 550-600. Presently it is 350 which would still show as being normal for a woman my age, but for me this feels terrible as it is so below my 'normal' range. Doctors don't understand this and so this is just another measure of being normal, for other people, but abnormal for me.

K has written about working with me on my Facebook page and I have done links with hers. I feel so sorry for K because this whole situation is so difficult and my symptoms are just catastrophic - the cold has just finished me off. Despite this though - bladder and bowels are much better than they were and my lower limb function is remaining good despite me now feeling weak. When I danced it felt beautiful. It is important to continually hang on to what IS good despite the abnormality of other things. Because K is always so positive, I can remain positive despite being at a very low ebb today.

Neck wrong at 3 movement planes (so all of them!) plus TMJ

K writes, "Basically, your neck is not moving in the correct planes.  Your head is too far forward on your neck (neck protraction), your neck is rotated to the right, your upper cervical spine is extended.  Your TMJ is symptomatic and your eyes are not tracking correctly.  We gave you increased ROM to your left shoulder as requested and this has led in part to your lack of stability elsewhere, the left side being the weaker side.  The fact that your lower body has held is a real breakthrough. 

We need to get neck in a neutrally stable position with eyes and TMJ working more efficiently before these neck symptoms ease.  We have succeeded in the past, but only with compromises.  Once TMJ was stable, things were better, but TMJ was only stable when neck was still protracted and extended, the rotational dysfunction had corrected.  We have never addressed eye tracking as this is totally new to me, but we will work it into our treatment plan.  Mid-scapular function has improved, but only when you concentrate on an exercise, when not 'exercising' your upper cervical spine extends and protracts.

You will have to work out the lesser of all the evils, stabilise/correct one component and work to modify another.  There will have to be undesirable compensations, but again, I will reassess how far 'wrong' these are and we progress.  Your pelvis and lumbar spine followed just the same path, but the ill effects were tight left ITB, neural left calf and left abdominal pain.  These were not as alarming for you as the neck symptoms you experience, but it is the same pattern of gradual correction."

More work and exercises to do....!

Neck continues to be a nuisance!

Following last Monday's treatment, I started to get headaches on the Tuesday afternoon. I had partly put this down to the potential stress of having my appraisal in the morning (that had gone very well), but after Tuesday, things massively escalated. On Wednesday I had to leave work early owing to nausea and POTS symptoms. I then felt neck had completely restricted at it's same level of problem -not quite sure which level this is - but I have ended up with Eczema on the left side, a sore throat, both on Wednesday and then a very severe sore throat (now possibly cold) on Saturday. Bladder has been very, very affected and last night (Saturday) went to the bathroom approximately 15 times at night. Sleep has been very poor for the past few nights, and there is pain and spasm in neck and upper traps/T-Spine. Additionally arms are affected and weak. Fatigue is very much around and a very big one feels in the offering, which I am trying to fight off. Mood is affected. I am quite depressive and "flat" and there has been a mild increase in self-harm, perhaps bought on by skin irritation in the area. My behaviour is on the border and I have already hugely annoyed K by emailing her too much in the past week - so behaviour is very child-like and demanding and manic, but also cognitively "fuzzy" headed and very slow as extremely tired. I have to say that as much as K has had enough of this and suggested I found someone else - partly as a result of a lack of support for her from other medics -I too am utterly fed up with this situation as it does not make me feel at all well. We truly seem to be up against it, and I do feel for K as I am sure she has had enough. Before our new book is completed, there must, I feel, be a positive resolve of this situation.

Physio Update

I had a really good physio session today. I had come with a hugely increased range of movement in neck (flexion) which had been released in a Bowen session on Saturday. The result of this had been some fatigue and nausea yesterday as I coped with this extra range of movement. I had wanted to see K today particularly for my right ankle being tight, and restriction in plie. K had time, so I had an hour of physio and K begun work in my sacral to continue to aid with both tightness in the sacral area, evacuation (and bowel related stuff) and for lower back stuff and then to support both neck and ankle work. K had to do a lot of work to my right foot, calf and anterior tibia which was all tight. K's work improved this plie and then did some more work on right big toe which helped with releve, although this is still both tight and painful as yet.

K did work on my TMJ for both bladder and neck work and then did some work on my ribs which were very tight, especially left and first rib, and my stomach was being pulled around to the left. K said more work needs to be done on left anterior rib cage. This made me have some POTS symptoms for a brief time, but  then eased off.

K ended up doing some work on sacral again and then released off my lumbar spine including opening up an area I have held for ages. We ended up doing an exercise where I do a pelvic lift and then leg extension which is a strengthening area for lumbar spine and also a neural stretch for foot.

It was a really good session and then when I went running this evening it was much better for me all round and I felt very fluid, body-through and managed more than I had done before.

Managing More!

I have just got back from a few days in Washington DC where I attended the International Association of Dance Medicine (IADMS) conference. It was my first ever visit to the USA and I really enjoyed it. The sense of space is amazing compared to here in the UK and the people are so friendly. Washington DC has some beautiful buildings and of course the shopping malls are enormous. The food was good and we found a really good diner in George Town.

Last year when I had attended the IADMS conference in Birmingham UK, I felt more jet-lagged and fatigued than I did when visiting another country and experiencing 'real' jet-lag. I managed to attend as much of the conference as I wanted to. I managed to do a group cycling tour and lots of walking each day. I did sleep, though was often waking too early as I was worried about getting up in time to help on our work stand! I went out a lot and had a lot of fun. This little trip gave me a real insight into a significant quality of life.

Since I have returned home, I have coped with the jetlag again and managed two full days of work, including going running and doing two ballet classes. It is just amazing how much more I can do - the fatigues are still going on, but are getting less "huge."

On my last swimming session I managed to swim some strokes without floats!

In so much pain.....

Oh dear!! I cannot think that "normal" people can suffer this much pain from doing a little bit of a jog and run in a park. It is abnormal. I know my pain gets amplified - but this is crazy. I have severe abductor pain and upper body pain. Work was horrendous because the pain made me so stressed - it felt like everyone was shouting at me - even though they weren't. K was really good to me at lunch time and listened to me and let me be. I am having treatment again tomorrow mainly to save me having to go to clinic on Monday. I hate this.... Yesterday I felt so well and fine. I wish my body reacted normally....

First time - up and running!

I went to the park today and once again repeated my measured walk and beat my score of last weekend. I did it this time in 7.30. I had a very good sense of deep core abdominal strength and confident eye line, thus retaining neck alignment. I felt strong and purposeful and really raised my heart rate level in the walk, doing it as fast as possible. I then walked a bit further around the park before just trying to break into a gentle run. As it was a Thursday, and the park less busy, I felt able to just have a go without feeling people might be looking at me. I was probably going in 50 metre stints and then decided to use the chorus of songs to run in and walk in the rest of the time. This meant my HR was raised, but I was even able to sing along. I could probably go even faster and longer! Later in the day I had to walk a lot more owing to bus problems because of a fire local to my work, so certainly did plenty of exercise. Was also absolutely starving hungry! Anyway, in terms of the running, I felt quite stable and think the movement probably looked good, but will ask K to review it if she has time. Running was a huge step forwards in my progress and I am really proud of myself for having a go - several times. It felt much stronger than it had as a child or teenager. I must do some gluteal and calf stretches before bed tonight! Oh, and I also had 8.5 hours sleep last night. Life is good today!

Huge improvements to sleep and bladder

I hadn't slept well since very early childhood - probably for the past 30 years. I am now 36. In the past few months I have had increasing periods of sleeping through the night without waking to need to use the bathroom. Sometimes things were so bad I was waking on average 6+ times per night to use the bathroom, or was simply not sleeping. The results have been disasterous and a complete lack of sleep, healing, repair or general brain function and sanity. No wonder sleep is a form of torture.

Physiotherapy, for reasons neither K or I are entirely clear about, has improved my ability to sleep so I am starting to reliably sleep through at least 2-3 times per week and on the less good nights only wake once or twice which would be fairly normal anyway. The improvements to bladder might be explained by stronger abdominals and pelvic floor, but also on work on the central and autonomic nervous system and work done via my neck. Sleep could be explained by work done on head and neck, but are as yet inconclusive. From my point of view, it doesn't matter. K and her work have had a revolutionary effect on my health and wellbeing for which I cannot thank her enough. http://www.watkinsphysio.com/index.htm

Physio Update

K has said that I am now in a new recovery phase following huge change. This is because we have massively increased activity levels - particularly of activities my body has not liked so much until recently. Just straight forward walking and then swimming (front crawl stroke) have been difficult for me because I have such hypermobile hips that my legs want to be in external rotation - hence my love of ballet, so for me controlling a neutral and parallel line requires a lot more control and effort than from a 'normamobile' person. I am doing more and more and new demands are being made on me - for example walking with my head held up, rather than with my eyes looking at the ground as I have done in the past. This is requiring a significant more amount of control and effort hence my latest fatigue, which K says is all explainable.

K released off my gluteals which were very tight. She did a little work to my back, but after doing ballet today, she needs to go back there because I couldn't quite get to where I wanted to go. However, K has to be so careful with me and not to kick other things off, so has usually adopted a less is more approach in her work with me.

K revisited my TMJ which is now opening normally and wide. This must have been another example of masked hypermobility. This all feels much better than it ever has before and has never opened so wide or straight before. More and more things are getting normalised and sorted out, which is really lovely.

K has worked on bladder and 'evacuation' (Bowel) and these have also improved - particularly bladder, and because my bladder isn't waking me up so much at night, I am now sleeping better. Because I am sleeping better, I have improved healing, repair, mood and cognitive function.

I left K a note after my physio session to say that my eyes had improved - so I can wear contact lenses for longer - perhaps better oxygen and tear flow. My skin is clearer and I am finally getting rid of Milia (tiny whitespots) which I have been plagued with for years. I am also craving healthier foods and and am less interested in chocolate and instant carbs in favour of fruit, veg and normal food. This is better as I will become more balanced. I have lost approx 2kg, although I am feeling my stomach muscles are not as toned as they were, so feel larger - but I am not doing all the physio exercises I had to in favour of using the muscles in normal activity and beyond.

At the end of the session, K unearthed the fact my left shoulder is restricted and we will work on this next session. This was also apparent in ballet where my upper T-Spine is restricted, and I am also severely restricted in spinal rotation - so that is something else to work on.

Anyway - it is all coming together and K has done such a fantastic job with me, I am very lucky to have met her and that she has stuck by me all this time!

Endurance + Fatigue

I timed myself walking in my measurable stretch of park.I think I shaved off about 1 minute off the time of 2 weeks ago, but was in a good mood and feeling competitive, which helped me. I'd say I did it in about 7.45 compared to 8.45 last time. This is a good improvement. Unfortunately my mobile phone timer didn't work, so I had to rely on the times I was listening to pieces of music. I will repeat the test in another few weeks. After my "timed walk" I did a circuit of the park before feeling quite hungry and went to E.D. to buy something to eat and a fresh fruit juice (on the boiling hot day it was) and then walked back to the park to eat spinach and ricotta cheese, an apple and fresh orange and carrot juice. I then felt more than just "a bit tired." My batteries had gone and I knew this was a fatigue rather than "being tired." I struggled back to the bus stop and then home. I had to go straight to bed. It was about 1.30pm. I woke up again at 2pm and then went outside in the garden in the beautiful sunshine with a rug, cushions, water and a book and slept on and off until 5pm. I ate at 6pm and then was back in bed just after having slept most of the afternoon away. I got up after 8am the following day. This is fatigue. My muscles all hurt like hell, particularly my gluteals, but my neck has remained in severe spasm and K and I are seeking advice from HB on this matter. I took Diazepam for the spasms before I went to bed.

***************************
I felt much more energetic today and downloaded some really good music for my MP3 player for walking in the park and walked for a good 2 hours. I then experienced an "emergency" hunger and was getting quite angry in the shops just because everyone seemed so slow - but again it is a very hot day. I came home and ate a very good lunch and then had to chill out for a while. My gluteals are still in agony, and painkillers are not helping. I am seeing K tomorrow, so hope she can do something about them. When I go into spasm it is just horrendous and won't release. In addition, my deep core muscle system has "switched off" so I have lost that beautiful connection with my neck and deep abdominals meaning the superficial muscles are overworking yet again. This is a very tiresome state of affairs and something I wish would go away. I am feeling quite grumpy about this and the amount of pain I end up because of it and feeling totally lazy - but at least I can loll about in the garden in the sunshine. 

Improving Endurance

As I now enter the final stages of rehabilitative physiotherapy, one of the things that K now needs me to do is to work on improving my endurance and then cardiovascular fitness. This is not something that K can do for me in physiotherapy or with physiotherapy exercises. We have talked about walking and improving my speed. Walking is important for reinforcing my new movement patterns in parallel and for whole trunk involvement.

Last week I timed myself walking in the park:

Some rough calculations on a google map of the part of the park I 'timed-walk' would make my walk approx 1km. I had already walked to the park before I did the test (perhaps call that a warm up). I didn't do the test 'flat-out' but worked out where I was going to walk to and set both music (chose jazz music for speed) and set timer. Took me 08.45. I then walked around the park for a further 15 minutes before repeating the test in reverse. I chose the same music to listen to to make the test as comparative as possible. The time back took 08.51 but is hardly significant. I would not say that I "went for it" and that I did not really push myself at all. I think that this is because I am still quite fatigued.

In 2006 I walked 479 metres in 5 minutes so I am now doing c1000 metres in c8.45. Not sure how to work out the difference(!)

I think it would be worth repeating this test when I am better in myself and am really able to push myself properly because I think I could to it faster than that, so perhaps I will repeat the test in another 1-2 weeks on a "good" day and then make an average of a comparatively worse day to get some parameters. I could then periodically repeat the test when I have been doing more walking in general and swimming and/or cycling.
 

Featured in the Daily Express!!!

Flare up Recovery

I have been feeling better since Wednesday following my last flare up. I saw K on Wednesday and she did a lot of work on my TMJ (Jaw) and neck which caused some very minor spasming and changes to heart rate/temperature, but nothing compared to the way I used to react in the past. K said that I had come out of the flare up remarkably quickly and well and felt that I had moved up to a new level in my stability and in how I was in general, and I agree. I can "go down" very quickly, but I am also able to recover more quickly than in the past. One of the crucial things in retaining my management relies on ensuring that my deep postural muscle groups remain functional since it is when these disengage and the superficial ones take over that I very rapidly end up in fatigue. I have gone back to doing some of my most crucial physio exercises such as pelvic tilt and ones involving the neck and then progressed to others -e.g. hoola-hooping and side-stretches. It has taken a few days, but I am feeling much less fatigued, I am sleeping much better again and my deep core muscles are definitely functioning again. I think it looks like I will need to retain some of my physiotherapy exercises in order to "remind" the deep core muscles about what they are meant to do. As I say, the reason why the deep muscles which are meant to be endurance (perhaps that speaks for itself) disengage and then the superficial and fast-twitch muscle groups take over is a mystery. In normal people both systems work together in harmony, but it just seems that in hypermobile people this is not the case. Any doctors or physiotherapists care to comment or add theories - I would be glad to hear them!

Update - Severe Abdo Pain and Fatigue

When one thing goes wrong, it is frequently a short time before a myriad of other things follow - a bit like a domino effect (Grahame, 2010, p.29, Knight, 2011, p25) of incidents which occur over time, sometimes with very rapid onslaught. K and I starting to refer to this as 'Chaos Theory' Mine went something like this:

I had physio with K last Monday where she worked to relieve my left ITB which was pulling my knee again. She also did work to soften and relieve tension in both my lower and upper back/shoulders. I felt better after the session which had preceeded a stressful episode - a text from work when I was supposed to be on annual leave. I left K and felt better for talking to her (about work) and then was able to go shopping and enjoy my day. That was Monday (22nd August). During the night I had a mild asthma attack - the first in years. Taking a blue inhaler relieved it. The next day I had a pre-operative assessment at hospital and then had two messages from work and had to deal with more 'emergency issues' again whilst on leave. I then felt very low and fatigued. I thought it would be a good idea to try and do something and go shopping in town just prior to my ballet lesson. This was a huge mistake because I was so fatigued that after just over an hour of shopping I could hardly stand. Ballet was out of the question, which was a shame because I had done a good Pilates into Ballet class the night before. I got home from town and literally went to bed. It was 6pm.

The next day I had rallied slightly and went into town shopping again and had a more positive experience. I had somehow managed to miss lunch and came home starving hungry and ate at 6pm. I felt very achey and took some Diazepam and Codeine. I barely had an hour's sleep during the night and felt jetlagged.

I woke up on Thursday morning feeling completely fatigued, and in pain. I had to treat a few people and then was supposed to have an appointment with a stylist in town. It was pouring with rain. I didn't want to go, particularly as I felt I had found the right dress the day before. I went in but hardly had the energy to try much on and was probably quite hard work for the stylist. I went and picked up the other dress and struggled home. I went to bed for an hour at 4pm and then felt quite extraordinarily hungry. I ate at 5pm and took 7mg of Diazepam for pain and within minutes of finishing supper fell fast asleep in front of the TV and went to bed. I had only had about an hour of sleep the night before. I woke up around 9pm with left abdo pain which had been lingering for a few days and had got worse. By 11pm after more codeine I couldn't take it anymore so rung SELDOC for advice. They advised me to get to A&E so I called a non-emergency ambulance and taken to my local A&E. I was put in a cubical straight away as it wasn't too busy. It was generally a useless experience - they took bloods - messed up right hand so took from left hand. Bloods and urine came back clear. They then transferred me to the Clinical Decisions Unit (or Can't Decide Unit) before a more senior doctor came along to say they weren't going to admit me because I already had several appointments and referrals coming up and the only thing they could then do is to put me on an IV of Morphine. It was very tempting - but I declined it as I was too worried about work as I had the payroll to do and then to treat as well. They did give me some Buscopan to also try for the left abdo pain as well as to continue with my other drugs. I came home at 7am having again hardly slept through the night. I decided to have two hours of sleep before going to work, which was a  good idea.

I got through the day quite well and a colleague gave me a lift part of the way home. I came  home and ate a light supper before falling asleep again in front of the TV and went to bed at 8am and slept through, waking twice and the next thing it was 10.20am before I had to get up to go and do a photoshoot for a national newsaper for my book. I was so fatigued when I arrived I could barely function. This was not helped by having to wear some crazy highheels for the shoot. I was all made up and looked very glamerous, but I could have done without this. I did become more awake as the day went on and managed to sort out my bedroom and threw away about 3 bin-bags of clothes - which no longer fit because my shape has changed so much!

I was tired but did not sleep well last night. I woke up at 6.30am - very early for a Sunday.

Chaos Theory
Preludes to this disaster:

• Stress from work (when on annual leave)
• Doing Pilates...? (too much - though was very careful) 
• Change of movement patterning as I am now 'fixing' muscle groups in my legs much less
• Asthma attack
• Left abdominal pain
• Fatigue
• Poor sleep
• Bladder more 'irritated' than normal (increased urination)
• Increased pain and global wide-spread nodules of pain
• Poor memory, decision making etc

All these factors lead to chaos in the system and multisystemic chaos at that.

K asked me to try and do 2-3 pelvic tilts and some exercises for my neck. I had already done this on the day she asked me to - I am going to do a full-set of physio exercises today and also want to go swimming, though will undoubtedly have to take this more slowly than where I had got before - pacing!

Today my arms still hurt like hell. My abdo is better though again.

Improvement!

I think I am coming out of flare up and have successfully managed a very long and trying day at work followed by a really good ballet class. The new soleous stretches K gave me on 1st August are really helping and I felt like I had much more demi-plie and more jump. I am in a much better mood also since doing the class, especially as it was a good one. I would still much rather see K next week in a good space and not in the middle of a flare up. I also need to be able to get on and do more book-writing!

Flare up 'rages' on

This flare up has really taken a hold to the extent I have had to ring my GP for advice (too fatigued to go there). I have pain in every single square centimetre of my body. Needle-like pain all over my arms, upperback  and into my legs. My left knee is really unhappy, and as for my lumbar spine, it is in absolute chaos. My left abdominal hurts and I am wiped out. This post will be short. I have been advised I can up my dose of Diazepam to cope with the worst of my muscle spasms. I will go incrementally from 5-7mg and then up to 10mg to cope with this. I can take codeine, but we are trying to mimimise that because of the problems with my gut (Diverticulcosis) as per diagnosis of Colonoscopy. I had no effects from the sedation or local anaesthesisa, (Lidocaine) and was thoroughly awake throughout - so perhaps I am suffering from the effects of this also. The worst aspect of the procedure which actually caused pain was being pumped full of gas so they can see the colon. This caused a lot of pain until (ahem) it was released.

I hate being in the state. I have done all the right things. I went swimming on Friday, I even walked back from hospital on Saturday as I was totally "with it"  Yesterday I went for a walk and did some ballet and physio exercises from home. Today I am "grounded" and will just try and do one or two physio exercises. I keep trying to do things like work (from home), but the pain is just awful. I am missing K, but even she would be in difficulty helping me today. I will keep having baths, and cuddling the cat. I would like a big hug form someone. People just understanding helps. Will go on the HMSA forum (Hypermobility Syndrome Association Forum). I hate flare ups. There is no-knowing how long it will go on for, but it will pass in time. I have had a remarkably good few weeks, it is so depressing returning to this space.

Flare Up

I hate this. In the middle of a huge flare up. Pain literally everywhere. Fatigued. My tummy is in awful pain. Colonoscopy on Saturday. I am still trying to work, but it is getting harder. I have been in such a good space lately that it makes it all the more difficult to return to being in this state. My muscles are just gripping in spasm for dear life, and there is needle-like pain everywhere. I had some Feldenkrais yesterday which did free me up for a while, but by the evening was wiped out again and in bed by 9pm. I just hate days like this because everything is such hard work.

Horrible day!!

I wrote my last entry after codeine and Diazepam. It is some of my better writing(!). I am "out of it" today. I am in pain everywhere, I am completely fatigued. I can hardly move. Worst day in about six weeks, so can't overly complain. Got to relate to what is being requested of my back and new movement patterns. What is always curious is the amount of pain I get in my arms, upper back and neck - perhaps lifting my nephew this weekend is to blame for that, but probably fibromyalgic pain. Back to bed with the cat, I think. Very grumpy. Brain-fogged.

Bending with(out) breaking

My spine is like a sea-horse - or so I have discovered in the past week. I had flattened off my lumbar curve - we think protectively. Whilst I am now undoing this on an almost addictive way by either imaging, or moving into what is producing pain I thought I had left in 2001, I feel I am coming whole circle in everything in treatment. I am going swimming again and want to smash and wriggle my back against the walls of that pool. There is an addiction in repeatedly cracking and clicking my spine (at a guess where my disc prolapses at L4/5). I am taking an ecstatic and perverse joy in creating this sensation of appalling pain as I ask the area to awaken and move. The difference between now and 2001 is that I am no longer afraid. I have lost control of this new sense of movement and in both it's recklessness and mine I am creating havoc in my knees and calves. I have had to tape myself (24 hours) and my adductors are fighting a losing battle against my knees and ITB which are fighting to wonder off laterally. My core is being challenged to the maximum to retain my pelvis and fight against movement patterns which I had barely lost (standing and walking in lateral rotation). My deep abdominal muscles are squealing in the fight as I let my tail uncurl to form a more beautiful curve. I am fighting the fact that it looks like my bum is sticking out. It is futile asking me, "Does my Bum look big in this?" I don't know where I am in alignment, but need to understand that these curves in the spine are protective and knocking them out is denying them their functional and aesthetic right. The way I am sitting is changing from moment to moment. In lying horizontal I am like snake, constantly fidgeting to make my spine click. All the while, my calves are in a raw, blunt, pain and feel as tight as the ball of my fist. My Soleus are being pushed to the limit in a new and deep stretch, that makes them gasp. The effort to achieve all this is just like me in the water - I am fighting it with huge determination. I am facing all my gremlins all at once - there is no longer any armour and I am having to expose all my raw nerves and confront them. Only I can do this. I am now doing this alone, but using every bit of self-management I possess including Bowen Therapy, taping, painkillers, water, pacing, movement, self-belief. I am curious in this new journey of self-discovery. A really big bit of me very much wants to "get help" but I also need to see if I can work this one through myself. This is partly because K is away, and I want to show her (and me) that I can manage by myself as my independance and self-won success and skill at managing my HMS improve all the time. I want to take control even though we are exposing so much pain in a raw area. Perhaps I just see it as discovering a new country. I think curiosity and determination are helping me to replace fear, coupled with a positivity and a quiet self-confidence that I will win in the end. I am in charge - not my body! It is a new concept for me - playing it back at it's own game. Both of us (mind and body) are as bloody stubborn as the other!

Feeling Fantastic!!!

I feel fabulous and well and in a wonderful space. I don't think I have ever felt quite this well or good in all my life. I feel energised and positive, fit and healthy. If this is what being in good health means - then it is just amazing. I don't think I knew what it meant to be really thriving and well until now. Today is the first day of the rest of my life. I am ready for new things and new people in my life. I didn't know life could actually be this good!

Physio was good  -  K did some work on my back, which was necessary as L4/5 was tight to the right. I now need to work to try and articulate the tight and "straight" area of my lumbar spine  - my hinge being at about L2. Below that is restricted and needs mobilising to take pressure of the L2 area. I need to do a pelvic tilt on standing with my knees slightly bend and standing against the wall, trying to retain a tiny curve in the more restricted area. I can also try this in sitting.

K did more calf work and I also need to try and do a soleus stretch. When I did this to the right it was instinctive and correct movement, but to the left, I rely on my right leg too much to support the movement that K asked me to do. Both this and the pelvic tilt are new exercises. I will continue with some of the neural dorsiflexion stretches, and can do any of my other exercises as I feel necessary.

K was pleased I had been swimming, and wants me to try and do this weekly. I think this is a realistic target. I can do this before work on some days of the week; Friday would be good as I do too much else early in the week.

Anyway, a good session and then a really nice ballet class this evening, but left calf - actually soleus - felt "dodgy" so did what felt "safe" to do, and wanted to do more, but knew it wasn't going to be sensible.

We have achieved sense and sensibility!