Problems with bendiness.

I discovered, much to my amazement, and that of my teacher, that I could do splits at the age of five. We were in gym class and the teacher asked if anybody could do splits so everyone started to slide their legs outwards from the hip. The teacher put up her hand and called, no you slide one leg in front and one behind you, so we all started to try splits the way she told us and to my amazement I slid smoothly to the floor! The teacher looked at me with an amazed expression and said "did you know you could do that?" I shook my head, no I had no idea.
Of course I then discovered I could high kick, I could bend and touch not only my feet but the floor without bending my knees, and I could wrap my legs around my neck. By the age of nine or ten I was having trouble with my knees and hips, my hip would slip as I walked home from school causing me to fall to the pavement with no warning, and my knees would swell, which according to my doctor was housemaids knee ! He advised mom to bandage my leg from wrist to ankle and I was sent to school hobbling painfully, stiff legged as the bandages were so tight I couldn't bend my leg! Presumably it was meant to push out the fluid on my knee but just caused me great embarrassment and pain.
When in my twenties the back pain began, getting worse when I fell on black ice one at on my way to work, causing me to hobble painfully home, I later learnt I had ruptured two discs.
I managed for a while, I had physio and ended up at a back pain centre in a hospital in Manchester for three weeks. I learnt relaxation and pain coping techniques, and got back to work for a while.
Arthritis started to complicate matters, degenerative disc disease not helping and an unstable spine and knees which bend backwards contributed to my problems, and though I tried to keep going the pain often gets too much for me. I use a mobility scooter these days, I fought against it for a long time, especially as I was diagnosed with osteopaenia a couple of years ago and walking andk exercise keeps bones strong, but constant pain was wearing me down, walking was too difficult and too painful for me, using a mobility scooter gave me my independence back.
It's been 52 years since I found I could do splits and it was realised I am hypermobile, once the pain came it was hypermobility syndrome, now known to be the same as ehlers danlos type 3, perhaps if my doctor had even heard of this debilitating condition years ago I might have been treated differently, who knows.

Standing, walking. Wish I could!

Just been out for lunch with an old friend at a local garden centre, and although I was walking with a stick and mentioned that I have just had a mobility scooter because I cannot walk far or stand for long we still had to walk around the pet section where she looked for ages at the many things you can buy for hamsters nowadays because she has decided to buy a hamster for her daughter as a surprise for Christmas but has not yet bought the actual hamster! She bought things for it to chew on, a ball for it to run around in etc., so hopefully she will definately buy the hamster before Christmas now! I was already struggling just walking around the small pet section and standing for too long while she cogitated on which chewy thing to buy then on the way to the till to pay she decided she needed to use the toilet and left me standing next to her basket of hamster related goods while she skipped off to take advantage of the facilities which was not the best idea for me as just standing really hurts. So there was I, swaying from one side to the other wishing she would hurry up! Its true what they say, ehlers danlos mobility syndrome is invisible, even though I use a stick and walk relatively slowly it seems to go unnoticed, and I don`t like to make a fuss and say I am struggling so I suppose its my own fault as I suffer in silence. Its not even as though we were walking around for very long, but just a few minutes is often enough for me, it certainly was today, and the arthritis in my spine was causing, and is still causing, lots of pain. Its good in one way that people treat me as they would anybody else, but on the other hand when I am struggling it would be nice if, just for once, somebody noticed!

Pain in the side.

I don`t know if it has anything to do with my hypermobility, and ehlers danlos, but since about 3.30 yesterday afternoon I have been in agony!
I started having twinges in my left side, round about the area which would coincide with the bottom of my rib cage. The twinges got more and more frequent, and more and more painful, during the evening and by mid evening I was in agony with sharp stabbing pains every few seconds which made me wince and jump. The area was also very sore and tender to the touch and I could not even bare to have the material of my clothing next to the area so painful was it. The whole of my left side, from breast down to hip, radiating slightly round to the front and back was very very tender, though nothing was showing on my skin, no redness, no rash, no apparent swelling, yet I only needed to touch it and I jumped with pain. I tried to concentrate on the television, though I could not get myself comfortable, and by ten o`clock the tears were streaming down my face even though I attempted to stop them, the pain was just so fierce I could not bare it! When my husband realised how much I was suffering he brought me painkillers and a wheat bag, hoping the heat would help. I was wary about putting the wheat bag near to the tender area and I very carefully placed it as close as I was able, it took about an hour and thankfully the pains began to subside a little, soothed by the heat, or by the pain killing medication, perhaps both I don`t know, I was just glad the pain was a bit better! Eventually I decided I had to try and go to bed, reluctantly as I could not see how I would be able to sleep if the level of pain kept the same and I had to ask my husband to warm up the wheat bag once again. I laid it on the mattress and flattened it out, then carefully lowered myself gingerly on top of it. It took a while but eventually I managed to get a little more comfortable and I did drop off to sleep, though waking a few times in the night with the stabbing pains. I woke early this morning because of the pain and carefully got dressed and I have thought it best to rest today as moving around seems to aggravate it.
I have no idea of the cause but wonder if it has anything to do with my hypermobility and ehlers danlos, as I can move in a certain way and my ribs seem to dig in and hurt me. I have had something similar to this before, but not to this extent, not so long lasting and painful. Hopefully it will right itself, I don`t fancy yet another trip to the doctor!

Is it great being hypermobile? No really.

Over the years I have had problems with so many of my joints, I score top marks on the Beighton Scale, it seems that most of my joints are loose.
My ankle is so painful at the moment, it came on yesterday suddenly for no reason whatsoever, one minute it was okay, the next I could hardly put my weight on my left foot. The ankle has been clicking for some time, and I have had many times when pain has started in the ankle for no reason over the course of many years, but this time the pain radiates up the lower calf and I get a shooting pain when I put weight on it. I have put my magnetic support on which normally works in a few days so I am hoping it will take the pain away, though as yet it has done no good at all. I am barely able to hobble and am slightly worried that this pain is not the same as I usually get. I have noticed that in the last few months the pain, when it comes, lasts for longer. At one time I could put the strapping on and it would subside within 3 or 4 days, but it has been playing up a little for a fortnight now and keeps getting worse each time it returns. My GP said he cannot give me any different anti inflammatories or pain killers so he seems to have given up and I don`t quite know what to do, or where to go for help. I do find that if I have pains in one or two joints it makes me walk slightly differently to compensate for the pain site and then I subsequently get pain in a different place because I am moving my body in a slightly different way or position.
I used to think it was great being hypermobile when I was younger and my party piece was to do the splits, high kick or wrap my legs around my neck. I now hate being hypermobile as I would not be in the physical pain I am suffering now if I weren`t.

Sleeping, or not.

I have not been sleeping well lately, things on my mind but also I have not been able to get myself comfortable. Lie on one side, hip displaces slightly, pain. Turn over, shoulders ache then hip begins to hurt. I can`t win. I lie in the dark trying to still my mind, make my mind blank but then I have to turn over because my knee hurts and my back has gone into spasm. He snores loudly beside me and I despair of getting any sleep. I hear his alarm go off at 6am and groan, I can`t remember being asleep yet and it is almost time to get up.

Pain.

I asked my doctor yesterday if I could be refered to a rheumatologist. He told me it would not be of any benefit, they would only give me the same anti inflammatories and pain killers I already have on repeat prescription from him,and would not be able to offer me anything else. I asked about steroid injections and he looked horrified, telling me they have lots of side effects and I have enough problems as it is, without anything else! He said steroid injections are more for rheumatoid arthritis than the osteoarthritis I have. He showed me his own hands and told me he has osteoarthritis himself for which he does not take anything as he does not want the side effects! Thats all very well if you just have the pain in the hands I thought, but when you have back pain, both lower and upper, knee pain, your shoulder hurts and your ankle is painful and clicks aswell as the joints of the knuckles and fingers you need a bit of help! I find standing in one spot for more than a few minutes agonising and my hips and back scream with pain when walking, so much so that I need a mobility scooter. I would love to avoid taking medication, and I tried for a long time to do without, but I have reached the stage where the pain is too much and I cannot function without pain relief. I am 57 now, so maybe a rheumatologist would not have a lot to offer, but I think perhaps my GP has not taken my hypermobility into account, maybe he has I don`t know. To be told there is nothing else he can do is difficult to come to terms with, and to know I have to live with this pain, as even taking the medication I still have pain, though perhaps the edge is taken off, is very hard to bear.

EDS IS A PAIN, LITERALLY.

My right hip is absolute agony right now, so much so that I don`t know where to put myself. Everytime I move, even if it is a small movement, it is much much worse and walking, well walking at the moment is almost impossible. The pain killers have not done a thing, though I took a couple two hours ago, I have had my anti inflammatories and I am now wondering what to do as nothing is helping. I don`t even know what I have done to it, but then again my hip can sublax just by my turning over in bed, so really I don`t need to do a lot! Hopefully with some rest it will right itself, I know I can`t put up with it like this for much longer.