Year of the sheep.

After my last GP appointment, my hip got steadily worse.

On the 29th, I rang NHS Direct at about 21.00, to see about getting a clinician to look at it. Long story short, by 4am on the 30th I’d given up, and went to bed with a blue foot and a leg I couldn’t use.

The next morning, I phoned my GP, who “Would get back to me urgently”, and by about 13.00 I was on the phone to Dr Hpm, who sent me immediately for x-ray at any local hospital.

So, by 14.00 I was in a friend’s car, on the way to not one of the three usual hospitals (CA, StJ, LGI) but to the neighbouring Trust, basically because the scenery over the hills in the snow is rather nice and it wouldn’t be full of drunks and busyness. And, you know what, it was really nice. The receptionist booked me in and did all the digging for me to find out where I was supposed to be (A fax from my GP had been delayed, so I’d arrived without any paperwork), a nurse got me a trolley to rest on, since the chairs were killing my back and hips, and the radiographer (From the home country!) was really quick and professional and friendly. I was in and back out in less than an hour – Didn’t get to look at my own x-ray, which I usually like doing, but will have the results within the week.


And then this morning, I rang UCLH to see about my Stanmore referral, who told me to ring Stanmore – And they’d lost it. So, on the 2nd, when I go to my GP again, as well as asking for my medication to be reviewed and getting the results of my x-ray, I’m also going to have to push for the referral letter to Stanmore.


Oh well, happy new year, and hopefully the next one will be better.

Swings and Roundabouts in the Rat Park

Yesterday night was a long, long night. Got to sleep around 4am, woke up at 5.30 after a nightmare that was violent enough that I fully dislocated my shoulder in it, leaving me basically trapped in bed, then dozed on and off unti leaving the house at 7.30 to get to my 8am GP appointment with Dr Hpm. I had five questions, and these are they, as I asked them, with the answers;

1) Can I get half of my Laxido swapped for glycerin suppositories?

a) Yes, of course. Here, have a non-repeat prescription for twelve infant-sized 1g glycerin suppositories, which the pharmacist advises “Oh, just take five at once”.

2) Can I have my NSAID changed to a stronger one?

a) Yes, of course, have some diclofenac. I somehow manage to leave without a diclofenac prescription though.

3) I’ve not slept normally since March, it’s making me exhausted and feel like shit, and I’ve been taking far more diphenydramine than I really want to. Can I have some help?

a) No, because you might end up addicted to sleeping pills. Have you tried a hot milky drink? (Literally. He actually invoked the legendary ‘hot milky drink’. He may as well have said ‘How about turning off all the screens and sitting quietly for an hour before bedtime?’ This ignores the fact that I no longer have a ‘bedtime’, and that I wake up screaming at least twice a night. He said that sleeping pills were only very rarely given out, nowadays, and that they were worse than heroin and stopped working after a week (All verifiably false, by the way, I know plenty of people who take zopiclone regularly and have done for years, and it still work.)

4) Can I have more diazepam, the stuff that everyone has been happily prescribing me on an as-needed basis for most of this year, and that has been the only thing to reliably stop the muscle spasms?

a) No, because it’s addictive. We don’t want you to end up with an addiction problem on top of your existing problem.

4b) Can I have a non-addictive antispasmodic then? I do need something to stop the painful spasms which can cut through heavy doses of morphine and turn my hands blue.

a) No, have you tried putting a heat pack on them? Or an ice pack? Two pounds of frozen peas, that’s the best thing.

5) Physio told me that my GP was the one who needed to sort out the investigations into my hip and give me the steroid injections. Will you?

a) No, ask Rheumatology.

In fact “Phone them up and ask yourself” was the answer to all my questions about other departments and trusts – Rheumatology, Stanmore (With the addition of “Say you’ll take a cancellation, that you’ll get down there at a minute’s notice”), CBT for Pain. Everything.

He was also very, very concerned about the fact that I used morphine as a painkiller. Worried that I was addicted. And lo, has kept me on half rations for a second month, meaning that I’m going to spend another month in pain. If you give me 60 tablets to last 30 days, and tell me to take 1-2 every 12 hours, I’m going to run out by about week three. Or I’m going to go back to rationing out my medications, and spending most of my time in a medium amount of pain. And sleep less.

But now, really, I want to talk about addiction.

The title of this post for once actually has meaning, rather than just being a random thought that’s popped into my head whilst loading the page. The Rat Park experiments were a series of experiments (no shock there) done on rats (surprise!) by Bruce K. Alexander that involved altering various features of their environments and seeing how willing they were to take morphine in various situations. The (simple) version of the outcome of the experiments was that there’s very little basis to assume that a drug-induced adiction theory is correct.

So, what’s drug-induced addiction?

Basically, there’s two ideas about how people become addicted to substances; Drug-induced addiction is that the very nature of the drug makes people addicted to it (This giving rise to myths like “If you take crack cocaine once, you’ll always need more, because you’ll be addicted”) and the other is that it’s the social factors around drug-taking that make addiction possible in the first place (Alexander’s words were “Severely distressed animals, like severely distressed people, will relieve their distress pharmacologically, if they can”). Effectively, if (as a human) your association with morphine is that it’s the thing that you take for fun and to get high, you’re likely to get addicted. If your association with morphine is that you take it to relieve pain, even though you’ll incidentally get high, you’ll possibly end up with a dependency, but you won’t end up addicted.

If you’re interested, look up Bruce K. Alexander’s papers on addiction, he obviously talks about it in much greater depth than I can here, and with much better clarity.

I am dependent on morphine. I sometimes take it at levels which could be dangerous for someone who is morphine-naive, and usually take it at levels which would make someone morphine-naive very lightheaded and drowsy. This is because I have a tolerance for it, which is another side effect of regular use. My need for morphine is because I have regular, acute, musculoskeletal pain, radiating from constant fresh injuries, for which I must take a strong painkiller. The strong painkiller which works best for me is morphine. Thus, I am dependent on morphine. If I was no longer in pain, I would no longer take it.

You probably know what addiction feels like – Most people have felt headachey and faint after missing their morning coffee, or short-tempered and generally terrible when craving a cigarette. And with that feeling of “urgh” comes a craving for more – More caffeine, more nicotine. If I go for a week without morphine, I don’t feel terrible, and more importantly I don’t crave more to take the withdrawal effects away. For the first day, I get a slight headache and feel stiff, bruised, sleepy and emotionally fragile, but my drug of choice to fix that isn’t “more morphine”, it’s a paracetamol, and lots of fruit juice, and maybe a nice heavy breakfast. If I was addicted, my first instinct on feeling that distinctive bruising around my eyelids wouldn’t be “Oh, time for a big cup of tea and a lazy day” it would be “Take the morphine.”

I’m dependent, I’m not addicted. And I know that having a life without hypermobility related pain isn’t possible, but that the best chance I have for getting somewhere close to that is a mixture of exercises and medication. And the medication makes it easier to do the exercise. Grim as it sounds, even if I was addicted – If I motivated myself to go out and do things with the promise of morphine when I got home – that would still be better than spending my entire life in pain and miserable, for the sake of not offending the puritan sensibilities of a doctor.

A day in the life.

Inspired by @LittleMissBendy, here’s a day’s worth of subluxations. It’s been a fairly light day – Not tried to do much other that sit on the settee, watch TV, and read a little bit, due to a long, knackering week. On a day where I’d tried to do anything, I’d have had more. It’s also the winter solstice, so I might do this again at the vernal equinox, then midsummer, then the first day of autumn.

Anyway, happy solstice, I should go to bed.

00.00 – Midnight, 20th December. So, this is the entire record of the 21st of December 2014. Happy solstice, me.

00.34 – Jaw subluxations, whilst eating salmiakki. All small, all popped back in without needing to be manipulated.

01.10 – Full dislocation of left shoulder, due to “Hanging” on shoulder (Resting on elbow without using muscle tension to stay up, resulting in a lot of tension through the shoulder girdle). Needed massage, opiates, heavy manipulation to reduce.

2.30 – Bedtime. Sleep amazingly well,

10.00 – Wake up, and inventory the night’s injuries; Two shoulder subluxations, right wrist subluxed. Reset all upon getting out of bed, very little resistance from anything.

11.20 – Pain in hip starts. Reset right wrist sublux, but it doesn’t stay reset. Decide to ignore it.

12.17 – Hip subluxation, with horrendous back pain

12.51 – Hip subluxation resolves itself; Loud CRATCHUNCK noise, silver stars.

13.04 – Wrist subluxation becomes full dislocation.

13.09 – Realise that right shoulder has subluxed again, scapula has crept around to side of ribcage.

13.10 – Left radial end of clavicle is wrong, and hurts. Clunks back into place. Realise that whole shoulder and neck area is wrong on both sides. Very tense and very sore. Morphine time.

13.39 – Right wrist sublux. Hand very numb and very weak, popped back together, but cold and not working well.

14.02 – Right wrist, full dislocation,

14.13 – Hip hurt and unstable again. In stretching it out, managed to pop ankle.

14.15 – Left wrist subux.

15.01 – Left shoulder went to pieces, including a couple of ribs. Lots of pain and thus fell asleep.

18.06 – Woke up, still in pain, still in pieces. Reduced left shoulder (Much pain, much force needed), gently tried to reduce ribs, only semi-succeeded.

18.10 – Noticed right wrist, reset wrist with other hand. Took several steps and was incredibly painful.

18.11 – Right scapula starts creeping towards the front. More sore and stressful than immediately painful.

18.18 – Left thumb DP joint repeatedly subluxes.

18.30 – Lying on left hip, realise that position is pulling it out of joint. Subluxes.

19.01 – Left shoulder, pops back in comparatively easily, hurts enough that I get very lightheaded though.

19.04 – Eating fried bread, jaw subluxes again. Right wrist subluxes, pops back in by cracking it. Now have a screaming headache. More morphine.

19.23 – Right patella slides off and sideways. Popped back by hand.

19.54 – Left foot goes into spasm, takes a few minutes to work out that the problem is a sublux in the ankle. I hate feet.

20.08 – Horrendous back pain, ankle still not sorted.

20.20 – Left shoulder sublux, clavicle crawling up my neck.

20.36 – Right shoulder sublux, scapula and radial head of clavicle involved, mostly just the glenohumeral joint though. Popped back under own steam.

20.41 – Pain in right hip becomes completely disabling, lose ability to do anything other than shift uncomfortably and make pained noises.

20.48 – Return to conciousness.

21.32 – Medial clavicle (right hand side) comes off, out and forwards. Debating whether it’s bad enough for hospital, since breathing is awkward.

21.56 – Right shoulder reuced a bit, right wrist still very, very fucked. Got a hot water bottle on it, and letting it settle.

21.58 – Wrist kerthuncked back into place. Ow. Fuck. Ow. Ow.

22.27 – Right shoulder falls out, again. Neck and head absolutely screaming. Food and morphine.

23.06 – Right wrist subluxes and sticks subluxed.

23.23 – Something terrible happens in my lower back. Intense need to vomit.

23.58 – Left shoulder has fallen out and downwards, and nothing will keep it in place. And not sleepy at all, due to the pain.

So, the totals are;

Jaw – 2

Shoulder girdle – 14

Wrists – 12

Fingers – 1

Ribs – 1

Hips – 4

Knees -1

Ankles -1

TOTAL – 36, that I’ve noticed, with times where I’ve had two or three at once (The classic reset-fall out-reset-fall out-reset and sodding stick this time combination) counted as one episode.

And now it’s midnight again, and that’s a fairly normal day in the life. Tomorrow, I plan to get for a swim at the free session at the pool tomorrow, and maybe work on my dolls’ house a bit. Yesterday was knackering because I bought a load of paint, basically.

More bollocks from the physiotherapist

After having all that, I’ve dug through my bag of the leaflets that he’s given me. Now, consider that he thinks he really “Gets me” and knows that I “Don’t want any bullshit”. Complete with his statement of “Oh, us physios tend not to believe in anything that we’ve not seen with our own eyes.”

Three booklets – Two inappropriate in my specific case, and one which I think should be pulled from circulation altogether.

First, we’ll go with the tone-deaf; A leaflet called “Do you want to Improve your Health?”

“Health trainers provide a free one-on-one service to support you to lose weight, become more active, and manage your stress levels better, in order to lead a healthier lifestyle”

1) I’m not overweight. I’m 5’9, and weigh 9st5 at my heaviest.

2) I swim two to four times a week. I’m unable to walk, particularly. I’m as active as I can be, and every decent physio has told me to train less hard.

“A Health trainer could accompany you to the supermarket to help you understand food labelling and make healthier food choices”

3) I can’t physically get to the supermarket. I am more than capable of reading food labels, thank you. I eat a well-balanced diet. I supplement my B12, iron, calcium and vitamin C, I eat plenty of dark green leafy vegetables, wholemeal bread and pasta for soluble fibre, lentils and beans for protein, almonds, peanut butter and olive oil for fats. My only dietary vices are dark chocolate, port, three pints of beer a month and liquorice.

And finally;

“Health trainers work in the following areas-”

4) Nowhere near my house. Which the physio would have known, if he’d ever looked at my notes.

Insulting leaflet number two is an advert for the “Expert Patient Programme”, which seems to be CBT-lite. It’s also six two-and-a-half hour sessions (Can I concentrate for an hour at a time? My university sessions are about two and a half hours, and they wipe me out for a week afterwards…), taught by members of the public whose only training is… That they’ve done the course before. It looks very much like it’s a way to get the worried slightly-ill to talk to each other and thus feel less isolated and possibly to bother doctors less. This is a good thing. It’s probably not all that appropriate for someone who’s suffered from psychosis for years, who has said many, many times that they have difficulty talking about their problems in a group setting, and has an extremely rare illness that nobody else in the group will have even heard of. I don’t like people. I don’t like talking to them and I don’t like letting unnecessary extra people knowing what’s wrong with me. It’s not appropriate.

Insult three is the “Positive Care Programme” which, having been given to me by someone who prides himself on evidence and reasoning and not believing in bullshit, is interesting; It’s about alternative therapies.

As it says “Each week we like people to attend a Workshop, a Group Therapy, and an Individual Therapy.”

Here’s some highlights, because this booklet goes on forever;

Acupressure (“Causing the body’s energies to flow freely and enabling it to heal and balance itself”).

Emotional Freedom Technique “Freeing the flow of the body’s energy systems”.By holding the “healer’s” hands above or on the patient, to “clear energies that have become blocked”

Metamorphic Technique “Gently enabling us to move forward in life with greater ease” via touching your hands, feet and head.

Giving Voice “Finding the Song in your Heart”

Lots of stuff about “Spiritual exploration”

Nutritional therapy “Cleansing the body of accumulated wastes and toxins”

Tai Chi

Two types of meditation

Dru Yoga

The Alexander Technique (Lots of touching-based pseudoscience)



Indian Head Massage (During which you may have a “Healing Crisis” in which “You may feel terrible for a few days, if the body has had a great many toxins removed)

And finally our good old friend acupuncture, which is claiming to cure “Anxiety, appetitie problems, arthritis, backache, bladder dysfunction, breathing difficulties, CFS, colds, constipation, cystitis, depression, diarrhoea, dizziness, fertility trouble, frozen shoulder, haemorrhoids, headaches, heartburn, indigestion, joint pain, leg cramps, lumbago, menopausal symptoms, menstrual problems, migraines, morning sickness, osteoarthritis, rhinitis, sciatica, sinusitis, sore throat, stomach disorders, ulcers, stress, tennis elbow and trigeminal neuralgia” which is a lot of conditions for something which isn’t really a medical treatment at all.

Brilliantly, the whole booklet begins with;

“It is important that people do not do more than one individual therapy each week as many of the therapies work on the body’s “Energy” field or by removing “toxins” and to have more than one individual therapy may be counterproductive.”

Ignoring the fact that, if your liver isn’t removing toxins, you’re going to need more than a quick bout of cuddles and crystals to make you better. And that there isn’t an energy field in the body that can be manipulated by gently touching it.

For fuck’s sake. This is all funded by the lottery, but it’s still fucking pseudoscience, and it’s still being pushed by the NHS.


And finally Insult Four was a letter about dealing with “Persistent pain” that was “Unexplained and did not respond to conventional treatment” – AKA “Pain that is completely psychological”. Further showing that he has no idea that EDS causes constant minor injuries in the form of subluxations and soft tissue injuries, and that my pain is perfectly explicable – AND that it responds well to actual therapies; Pain medication, massage, stretching, exercise, rest. He was just a terrible physio. The proverbial stopped clock that was right twice a day.


This gets dark, so don’t read it if you’re feeling wobbly about being crippled.

Physio yesterday – I’d been really looking forward to it, since my last appointment had been good-but-weird.

I’ve had a rough couple of days on the hip front – Lots of pain, lots of instability, lots of subluxes. On Monday night, after having an emergency GP appointment at the behest of 111 for the amount of pain I was in, I took 6mg of diazepam on top of 70mg of morphine to get to sleep. So to describe me as “A bit groggy” on Tuesday morning was an understatement. I woke up at 10, was on the bus by 11 (No time to eat in beforehand, and the bus driver insisted that I wasn’t actually disabled “Just because I was carrying a stick” and that turned into an argument), arrived in town by 12 (hideously travel sick, dry-heaved until I saw stars about ten yards in front of a small group of evangelists, who did nothing to help), took half an hour to walk across town from the first bus stop to the second (No time to eat again, the coffee shops were packed), took the second bus to CA (Again, travel sick to the point of fainting), so by the time I got to the upstairs desk at CA I needed a transport chair and a porter. My leg was a howling mess, I was fainting whenever I was standing, my vision was blurry, I felt sick, and my hip hurt so much that I couldn’t get a whole sentence out. So I flumphed into a trainsport chair and got a porter to take me down to physiotherapy – Arriving slightly late and barely able to string a sentence together.

Physio G came out to get me, and immediately told me off for being in a transport chair; Not overtly, just a tetchy “Oh, why are you in a chair, come on, get up. Why aren’t you walking?” He didn’t actually seem to be about to remove me from the waiting room until I gave him some sort of answer, so I just replied with “Can we talk about this in the room?”

He tutted at me, wheeled me down to the physio room, and asked again.

“I’m fainting whenever I stand up, not so fast that I can’t squat, and save myself from a full blackout, but close. My hip hurts – Hurts beyond anything normal, and it’s constant. I wake up in pain, the pain spreads up my back through the day, then I knock myself out at night to get so much as a few hours of sleep. It’s been at what I’ll describe as a solid 10 for three days. If I put weight on it, it gets worse. If I’d had the option to not come to physio today, I’d have stayed at home, because crossing town was hell.”

He tutted again. Didn’t want to examine the hip at all, just wanted to reassure me – There was no such thing as a hip subluxation (There is), the head of the femur was enclosed almost totally by the acetabulum (It isn’t), that the joint capsule was too sturdy to let the head of the femur move out under anything less than the pressure of a car crash or similar (True, in healthy people who have anywhere near sufficient collagen) and the thing that I thought was a “sublux” was just the greater trochanter moving past the glute medius (It isn’t, I can feel the difference). He described the problem as just being “Clicky hips” which was “Common in teenage girls, but most of them grow out of it” (Despite the fact that I observed that it happened a lot as a child, and really hurt, stopped when I was in serious training as a teenager, then started again a few years ago).

I told him that the GP yesterday had told me to ask for a steroid injection into the hip, and an ultrasound. First he bit my head off over “WHY would you need an ultrasound?” and then only reluctantly backed down when I, fairly reasonably, pointed out that it would show if there was soft tissue damae or inflammation that made the hip worse. He then said (Wrongly, as far as I know) that physiotherapists couldn’t ask for either ultrasounds or steroid injections. And then he was in an even worse mood.

He gave me some knee exercises – Holding the knee at 60 degrees and extending the foot against a wall, to strengthen the quad, some hip exercises that C2 had given me already, some shoulder exercises (Hold a stressball, straight-raise the arm), and some back exercises – Sitting straight, not slouched, and doing pelvis tilts. I reminded him that I’d not sat up straight, or even sat in a chair at all, for several months. I reminded him that doing so was painful, exhausting, and that it was a goal in and of itself.

And that was the second time that he told me that I was doing a pain avoidance strategy – First, that the muscles in the shoulder just “wouldn’t work” because they were trying to avoid the pain, but for some reason for my back and my hip, he very definitely suggested that I was putting some concious thought into being… In pain? Floppy? I think the word he wanted to use was “Lazy” – He’d called my shoulders lazy, he’d described me as anxious before. He seems very fixated on all of my coping strategies to be “bad habits”, and he described the movements that reduce the pain and appear to return the bone to the right place after a shoulder sublux (oddly, he WAS happy to call a shoulder sublux a sublux, just not a wrist or a hip) as “funny stuff” that I needed to stop doing.

At this point, after having been asked to try a couple of exercises, the pain in my hip pinged over from “Deafening” into “Complete obliteration of the self” and I jut froze up and stared into space, trying to signal that I couldn’t hear him at all because of the pain. He wasn’t curious about the pain, and didn’t even apologise for making me do an exercise when I was already obviously in agony. It subsided, slowly.

And then he started on the patient community. Suggesting that we’re all self-reinforcing bad information, and making each other all worse by describing “that painful thing where the joint jams up and the bone looks like it’s in the wrong place and the limb goes completely weak” as a sublux, and that we were just being superstitious and panicky and all silly.

He booked me in for January, my final session, and seemed very satisfied that we were on the same page and that next time he saw me I’d be 100% healthy.

I made it as far as the toilet in the upstairs reception before I started crying.

I made it into town before I’d decided that I was an idiot who’d done nothing but inconvenience people because I was a stupid insane whiny hypochondriac for three years, and that I didn’t deserve to live. I felt guilty and ashamed for the number of times that I’d had to cut short or cancel trips out with my best friend and his family because I was too ill to continue – Because I couldn’t walk. Worse than that, for a few split seconds, I resented my ill friends – I thought that they, like me, just had insufficient willpower and were reinforcing bad behaviours in themselves.

I was sitting down behind the abandoned Chinese supermarket, next to a couple of piles of human shit and a few scattered needles by the time I had got around to thinking about all the doctors’ time I’d wasted over the years – The number of genuine looks of sadness and doctors and staff staying late to look after me. I thought about the staff at the pool who had to put up with my constant wobbling around. I thought about the paramedics who had to give me nitrous and muscle relaxants, when they could have been attending to actual emergencies.

I felt like a pointless drain on everyone around me, and worse than that I felt stupid. I felt both like I was a gullible idiot who’d been taken in by seemingly-helpful people, and like I was an evil manipulator who’d wasted the time of too many consultants.

I fully intended to just open my jacket, take my drugs, and fall asleep. Hypothermia would be pretty quick in weather like this, sped up by not having eaten for a few days and by a full daily dose of morphine making my skin flush, chilling my blood down faster. I’d exchanged texts with my best friend a few minutes earlier, saying I was on a bus and going to do some shopping then go home, so nobody was particularly expecting me. It was quiet and out of the way and it didn’t take any courage that I didn’t have, just an extension of the wilful laziness that I evidently did have in spades.

I decided that I’d not do anything hasty. If I was going to leave in a few hours, I could use them wandering around town, spend a ludicrous amount of money on something just to see how it felt, maybe go and sit by the canal for a little bit. I managed to trick myself into going for a meal at the vegan cafe, and from there, onto a bus home.

I finally collapsed into a heap of wet leaves about two hundred yards from my house, from a mixture of cold, exhaustion, nausea and pain. I lay face down, next to a busy road, for what must have been just under an hour. When I finally came to, a group of pedestrians had literally just passed me, without stopping. My leg hurt. It burned, hot enough that I couldn’t fall back into unconsciousness. I dragged myself down to the old railway tunnel, (150 yards to go) a bit of shelter from the elements, and threw up a few times. I walked along it (125), up to the top of the ramp at the foot of my road (60), to the wall next to my neighbour’s house, where I could lean and try to stop my head from spinning (20) and then finally fell through the front door of my own home and curled up on the settee.

It was 6pm.

By midnight, I’d looked through my file – A+E admissions, letters from hypermobiity specialists and rheumatologists, observations from on-call doctors and my GPs; Plenty of pages saying “We saw this patient, with a dislocated wrist which had occurred spontaneously.” “The hip had become subluxated and the patient could not walk” “This patient has clear and severely disabling hypermobility” “The muscles had locked, meaning that diazepam had to be administered before the patient was able to successfully manipulate the joint back into the correct position”.

Years and years’ worth of highly qualified people telling me that they had seen, with their own eyes, exactly what I had described. People who outranked a non-specialist physiotherapist in the same way that a field marshal outranks an airsoft enthusiast. And most importantly, the note from the specialist hypermobility clinic saying “You seem like a fairly astute person – If a meical professional says something that you know doesn’t make sense, and doesn’t match up with your experience, just ignore it.”.

So, what’s the point? Well, I think my points are basically what I always say;

-Think before you speak, because as a medical professional your words carry weight that they wouldn’t otherwise. Your patients will want to be “good enough” for you, and if you make them feel like failures, it will hurt them.

-Educate yourself. The physio would have been correct IF he hadn’t been talking to someone with Ehlers-Danlos syndrome. He should have read the notes, even if only the physio pack, before making pronouncements.

-Educate yourself. Identify when your doctor is going wrong, and be prepared to challenge them. Demonstrate things if needed.

-Take any new information and add it to the information that you already have, given appropriate weighting. Don’t let one bad medic undo the word of a dozen good ones.

I think I’m going to be fine. I’m sad and angry and still in just as much pain as I started with, but that’s just normal. But, really, think before you tell someone who’s in pain that they’re just bringing it on themselves.

A day of little victories.

Today’s tiny victories;

-Got a 2.1 (77/73) in my third year German module, so I’m now halfway through my final year of undergraduate.

-Made a 20 minute mixed kilometre (Freestyle and breastroke) for the first time in ages, and got home safely.

-About to play a game of chess, probably with delicious roast potatoes as well.

Bugger this “Land mammal” lark, I want to be a mermaid in the Werra.

Lovely merry go rounds

On Tuesday I went back to physio, short on sleep, low on pain relief, but feeling surprisingly good about it all. There’s a running pattern where I just don’t sleep at all the night before my first session with a new physio – A good physio (C2, my wonderful dark mistress, physio to whom all others shall be compared) is like a good friend, meeting them can be a slightly life-changing experience, and a bad physio (C3, looking at you) can make your life a misery.

New physio, Physio G, seems to be closer to the former than the latter, but time will tell. He immediately focussed on two things; That I was probably dealing with a lot of emotional fallout from having been so fit, and now being “nothing” (His words, not mine), and that I was not interested in being fed bromides about wellness, I wanted the truth without the supserstition.

Firstly, I think that he was projecting his own experiences onto me a little bit; He’d been a semi-pro rugby player, got horrendously injured in his early twenties, and fell back onto physio as a “useful thing he could do”. He seemed far too keen to put his own experiences of feeling like the world had left him behind onto me, but on the other hand, they seemed fairly congruent to mine, so I don’t mind running with that. He’s also in agreement that CBT for Pain will do me the world of good, and that Stanmore (Where I get the impression he’d been a patient) will be a game-changer for me. So, well, he’s happy to accept that my mental health and physical health are linked, but that the physical is still very real as well.

Secondly, he seemed relieved that I’d already accepted that “pain free” was an unrealistic goal. He visibly relaxed after having asked “So, what do you expect out of physio?” and having me give the answer of “A set of strategies that let me make sense of which pain is dangerous, and how to minimise and control the pain that I do get. Which should, in turn, let me do more things with less risk”. He admitted that 90% of the worst part of his job was getting people used to the idea that they might just be in pain forever.

Thirdly, he was happy to point me in the direction of improving my own knowledge – I’d said that my goal was to reach the point where I didn’t need a physio, I just needed a textbook so that I could devise my own course. He approved of this as an idea, which was amazing, since most medics seem to hate the idea of an autodidact, especially one that seems to be gunning for their job. Took me through a dissection of the wrist, thumb and elbow, explaining the hypermobility in my thumb, checking that I knew the difference between a synovial pop and a subluxation (Sadly, I do get both, and I’ve now collected two days’ worth of data to show it, so his edict of “Stop cracking your wrists” is going to be reformulated to “I will stop cracking my wrists as a nervous habit, but will still do it when I need it”) and reassuring me that my elbow was really unlikely to subluxate when it was at full extension – But that I should stop hanging on it at full extension, because that was leading to muscle weakness in the arm, due to lack of use.

I now have hand exercises – Not the patronising “Two exercises at a time! You’ll forget more!” but four fidgets to strengthen key, pince, tripod and opposed grip (Using plasticine for better and tighter grip, and a stress ball for convenience when I’m out), finger situps to strengthen the palmar interossei and the flexor digitorum (Gripping a towel for greater resistance), and finger extensions (Elastic band around all the fingers, open and close hands) to strengthen up the various pollicis and stop the thumb from sliding past the tendons. And, indeed, every week I’ll get a new set of exercises for a new set of joints. Sets three times a day, taking about ten to fifteen minues a time, plus other stressball-mushing as required.

I also have a small notebook, in which I’m recording exercises as I get them, along with pain episodes, PRN medicine consumption, swim durations/distances and exercises. And I have physio textbooks on the way.

You know that motivated, rational, compliant, interested patient that everyone says that they want? I’m going to try to be him. I’ve got something like eight months before Stanmore, and if I’m not in the kind of shape that makes the ward sisters a bit wistful by the time I get there, I will consider myself to have failed.

Swam again on Tuesday – 800m, took about 35 minutes with plenty of breaks. Going again tonight. Was comfortably overtaken several times by a guy training for the Land’s End to John O’ Groats cycle, so I need to work on that. Hopefully see him again next week.

An Open Letter to Ehlers-Danlos UK, about the latest issue of Fragile Links

Yesterday, I got my copy of the Winter 2014 Fragile Links in the post – The official magazine that goes out to everyone in the EDS society, the big support network for EDS patients in the UK, which has a medical panel which includes Professor Beighton (Yes, as in the Beighton Criteria, literally the person who wrote the book on hypermobility) Professor Rodney Grahame and Dr Hanna Kazkaz – The three names that you’ll find one of somewhere in basically everyone diagnosed with EDS or joint hypermobility’s notes.

Their faces, and their endorsement, is right there in the first few pages of Fragile Links, Which is why I was surprised to find an article under the category of “EDS and Food” that consisted of pure unadulterated pseudoscience.

There’s no doubt that food can be a massive issue for many people with EDS, regardless of the subtype – We tend to have slow gut transit, delayed gastric emptying, a tendency towards irritable bowel or constipation, often difficulty chewing and swallowing due to a dodgy TMJ, and food allergies and intolerances seem to be quite common. A low FODMAP (Low in Fermentable Oligo- Poly- and Mono-saccharides, And Polyols) diet is often advocated for anyone with notable gut problems – Which is exactly what Gibson and Shepherd said it was for [1]. Some of us tend to eat only soft food that goes down easily without needing too much chewing or too much of a challenge to swallow. Most of us need food that’s easy to prepare – Chopping requires hand-strength, standing by the cooker requires leg strength, or the ability to sit in a perching stool for long periods of time, lifting baking trays or roasting tins in and out of the oven takes coordination and strength that a lot of us don’t have. So there’s a lot to worry about, with food.

Enter Yasmin Yekelenstam, making wild claims about the properties of food whilst completely misrepresenting the authors that she cites;

Foods described as antihistamine – Onion (“Rich in quercetin”), garlic, coriander, thyme, basil, turmeric, arugula, spring onion, chives, butternut squash, ginger, water chestnut. This may be true, but if it is, then it only applies to people who need a low-histamine diet, which is an incredibly small number of people, and the article was very unclear about that.

Foods described as anti-inflammatory – Thyme, onion, garlic, coriander, basil, olive oil, carrots, spring onion, chives, arugula, turmeric, white pepper, butternut squash, ginger, coconut, vanilla, nigella seeds, water chestnut. If these were notably anti-inflammatory, then they’d probably be mentioned by doctors when providing NSAIDS, either in a “Oh, you’ll want more of these” way, or in a “Oh, you’ll need to stop eating these, you don’t want to overdose” way.

Foods described as “potentially” preventing cancer – Mushrooms. Having read the two papers linked [2][3], which talk about the use of a concentrated extract of a chemical found in white button mushrooms, which was found to have anti-aromatase properties in large concentrations… That’s a long way away from saying “Prevents cancer”, and I don’t think a “Possibly” and “In animal trials” quite covers how tenuous the possibility is. A friend has debunked similar in the past. Another citation on this was from, which seems to be sort of like the Milk Marketing Board, but for mushrooms. Whatever it is, it’s not a peer-reviewed journal.

Foods described as inhibiting prostaglandins and reducing “brain fog” – Mushrooms. This one came with no citation beyond her own blog. Prostaglandins do an awful lot of jobs, none of which particularly need inhibiting with food (And if they do need inhibiting, such as when they’re inducing an early labour, the advice isn’t “eat more mushrooms”).

Foods described as analgesic or painkilling – Mushrooms, coconut. (I’m fairly sure that the only way a coconut is painkilling is if applied, whole, to the back of the head, until unconciousness occurs) there’s no citation at all on this one, and I’m sure that if coconut was actually an analgesic we’d just eat a dozen Bounty bars a day, instead of all this messy business of altering our mental health with gabapentin and amytriptaline and risking serotonin syndrome with tramadol and good old fashioned overdose with morphine.

Foods described as stabilising mast cells – Water chestnut. Mast cell stabilisers are actual medications, again, not foodstuffs.

A final indicator that the whole article was talking about something contrary to science was the assurance that if you’re avoiding sugar, you could replace the sugar in a recipe with apple puree or dates – Both of which are sweet because they contain huge amounts of sugar.

And I worried – I worried that it required non-trivial amount of scientific literacy to determine that the writer had misrepresented the findings of the papers she cited. I worried that, by putting this article in a magazine that’s headlined by the leading lights of EDS diagnosis and treatment in the UK, that it looks like they endorsed the article (Did they?). Mostly I worried that it’d add an extra level of anxiety to many people’s already fraught relationship with food.

And I worry that I’m not the only one who will have read it and had their trust in EDS UK ruined. They’re usually a great organisation, but I don’t want any part of my membership fee to go towards flogging pseudoscience. There’s enough people out there preying on our desperation – Telling us that for a price, they can give us the information that will make managing our condition with “One simple trick” that little bit easier – that we don’t need our own support group to help them.

I’d love a response, just explaining why the article was allowed to be published.

[1] Gibson and Shepherd, 2009