Chronology

The first sympton was aged five. I woke up and when I stood up from bed I couldn’t put any weight on my leg. I was taken to hospital. I remember the nurse forcing my leg flat on the table for x-ray and a shooting pain in my knee (which they ignored) and diagnosed nothing, basically.

After this I was in intense pain (in my knees) sitting on the floor, for example, in school assemblies. Unfortunately, my mother and the school were both cold/uncaring so I learned to just swallow the symptoms.

Next, there was intermittant pain in my knees. This started mid-teen years and so people just said it’s normal growing pain and no help was saught.

Looking back there are two symptoms around aged sixteen that I think are relevant to mention. One is that I wasn’t strong. It would manifest, for example, when I was asked to help push a car, and was totally unable to make it move. I came last in all school races, though I wasn’t obease. The other relevant thing is that I looked a lot older than I am, always about a decade.

I left the UK aged 21. By then I found it difficult to squat and there was also creaking and cracking coming from my knee caps.

Aged 25 it became serious suddenly. Over the course of a week, a strong clicking and crunching coming from my hip joint became unbearable pain and weakness and I was unable to walk at all for a few days. I think back then it was both hips but centering on the left (hard to recall as it’s shifted nowadays and the right is now bad). I was unable to squat at all, nor get out of a chair without using my hands. I never regained these abilities.

There was some improvement but it was up and down after that; I never recovered. On bad days I can hardly walk since then. Occasionally my shoulders are affected, a few partial shoulder dislocations and one full dislocation.

I could only ever walk so far because of pain, and just lived with it.

When going up stairs I could only do so on one leg for a number of years, but had a dream of using railing to strengthen the weak leg, and I was acutally living in a place with such a staircase (with rails either side) so I could support the weak leg almost like being on crutches. When I first tried using the weak leg there was a lot of clicking and scrunching from the joint, and weakness, but it improved over time and was pretty much cured at a later date when my weight was slim. Nowadays I use both legs to go up stairs but stop and go on only one or the other if there is pain in one particular hip (which can be either side) and I might use the railing if I am very tired. Generally, stairs are no problem.

In my mid-thirties I developed an eating disorder and my weight went down to around 62kg, and many symptoms hugely improved. My weight varies but generally I stay slim around 75kg. At the start of my forties I settled in Cambodia and regained a little weight, started work, and has the usual symptoms but bearable. I had finished this bout of slimming and noticed that the muscles seemed diminished. My collarbones were standing out. My biceps seemed shorter. There were specific indentations in my buttocks where very specific muscles seemed to have disappeared. Also the muscle on the top of my shoulder reduced.

I’d been socially phobic my whole life but was now confident enough to go to a hospital and ask for a diagnosis. There was an electrical stimulation test (EMG?) and I was told I have myopathy but it would be hard/impossible to diagnose. I think there was a CK test that was normal. I was passed around various consultants and it was getting very expensive and I lost my temper and complained. They sent me to a senior consultant who examined me and reviewed all my notes and he said that he didn’t believe I had myopathy and that my symptoms were due to slimming. I had a general medical then and the doctor there, on the basis of looking at my collarbones, said it looks normal, yes the bones standing out, but normal genetics (this was a general doctor).

I carried on for about six years but then had a constant pain in my right hip, radiating down both legs, aching, difficult to walk sometimes. The hip pain never went so I went to a different hospital and was given a single xray on my right hip and told it is a narrowed hip space and told to get a replacement. I had to wait six weeks for a consultant and in the meantime they gave me physiotherpy. This was very hard to start and I could hardly do the exercises, but I got stronger very quickly and the pain rapidly improved, basically disappearing within a couple of weeks. I got to see the consultant. He was basically an idiot and didn’t even look at me. Based on the xray, he said it’s ‘very bad’ and to get a hip replacement. I forced him to look at my shoulders. By then there was no muscle around the shoulder at all but the muscle over the breast was normal, so because the one above it had disappeared it really stood out as too big, but he glanced at it and said ‘I don’t see any signs of a dystrophy’. So I went back to work and didn’t have any symptoms really (apart from the normal weakness, pain was gone) for around four years.

However, two years after that I started getting back pain. I thought it was my kidneys and got them checked out but it was OK. I since realised that it occurs when I sit in a chair with no lower back support, it comes on after about ten minutes. I need to support my back with a cushion and if I do that it’s OK. If not, the pain will persist depending on how long I was sitting without support. This is also a permanent symptom now.

It’s worse now in the last year. I think I also have perhiperal artery disease. I have a pain when walking, aching, burning toes, it goes with rest and sometimes I can walk it off. Specifically, the right hip is the weakest point, with pain and occasional dislocations, usually when I’m in bed. It kinds of locks and when it goes back to the socket, it’s agony and weak and I can’t put any weight on it. Both hips are similar but the right is worse. There is also pain in my shins. It’s definitely centred around the left shin but it can be both. It comes on AFTER I finish walking and about ten minutes into a rest period. It is around the centre of my shin, and is usually the front but it can be the back in the calf muscle also. I don’t know if it’s PAD or the muscle working too hard due to myopathy? It could also be referred pain from the hip? My ankles are discoloured and the hair has fell off my shins. I weight myself and hover around 75kg but it can change by up to five kilos either way over a few days.

The hip pain returned, worse right side. There was a lot of clicking and dislocation and pain in bed, but I was 83 kilos and I dieted down to 76 and the night symptom improved. But the pain is unbearable if I sleep on any soft mattress, so I’m forced to sleep on a yoga mat on the floor. It’s also painful to sit on a soft seat. I actually walk around with a bouyancy aid (which they use to teach children to swim), so I can use it to sit on soft seats, such as in a cinema. But the seat needs to be above a certain height or it’s too painful.

I’m still doing physio and recently started taking turmeric, but I can only walk around a kilometer until the pain starts (sometimes less). There are two types. The sharp, stabbing pain at the joint (I assume arthritis) and the radiating, throbbing shins, feet and toes (I assume PAD). I still do physio and now aerobics and both help. I notice, when my hip allows, I tend to be better when active and excercising, walking as much as I can. The muscles on my thighs seems much thinner. Also, the muscles seem to have melted out of my face, my appearance has changed a lot. I’d say my chest muscles seem to be diminishing a bit. There is no weakness anywhere though. My face muscles all move normally. If anything, I can do more physio exercises now than when I first started five or so years ago now. It’s the volume of the muscles rather than their strength from what I can see. I do restrict my food though, only eating in the evening, to keep my weight down as it seems to help.