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.

IBS and EDS

It has come to light that IBS seems to be connected to EDS, having had stomach problems for a long time now I can well attest to that view. Food intolerance and stress contributing to the problems in my opinion. It is restrictive and debilitating and on many occasions I have been forced to cancel a social visit because of the problems caused. Pain caused by IBS can be terrible, and other side effects which I will leave to your imagination! Sometimes the only way to get over a flare up of IBS is to stop eating, and I am often just on water for a couple of days in the hope that it will sort things out. It gets me down and can often last for days, not an easy thing to cope with.

BURSITIS

For a few days I had bursitis behind my knee, very painful, but with rest it has eased a lot. I have had it before, all part of the ehlers danlos hypermobility experience I think, never a dull moment! I was visiting my cousins at the weekend, and we were all pulling our thumbs down to the wrist, one point for each wrist on the beighton scale. Then my cousin Susan said she could wrap her legs around her neck when she was younger, and we began to compare notes,  as I used to be able to do that too. They could remember me doing the splits, though when I was invited to perform this particular trick I declined because at the age of 56 that is now beyond me! Clive asked how I knew I could do these things, and why on earth did I try them in the first place?! Frankly I don`t have an answer to that, I suppose just because I could! I have always been a fidget and can never keep still, but perhaps it was a bit extreme to wrap my legs around my shoulders! Maybe it was in gym class at school, I honestly can`t remember. I know I discovered I could do splits in gym class at the age of 5, I certainly did not know I had the ability before then! I do now wish that I had not gone to such extremes, though how much it would have helped, and whether my joints would still be in the same state they are nowadays is anybodies guess. I often see people in their 70`s and 80`s walking briskly past me, when I am struggling to walk and leaning heavily on my stick, and think to myself why is life so unfair? Not that I wish any harm to those people, I just wish I could walk as quickly and without pain.

Hurt hurt hurt hurt hurt

When I woke yesterday morning my neck, shoulder and the upper part of my left arm felt very painful. Whether I had slept in a strange position or whether it would have happened anyway with my loose joints, and having had pain in the shoulder for some time, I don`t know, but despite taking pain killers throughout the day the pain did not really ever subside totally.

Today I woke with the same pain in my neck, shoulder and upper part of my left arm. I have taken pain killers and am currently sitting with my arm resting on a cushion to take the weight of the arm and I am now waiting for the 4 hours to be over so that I can take some more pain killers so once again they may have taken the edge off the pain, but it has not gone by any means. Maybe some heat would help, or I could try my tens machine again, but at the moment I am feeling rather sorry for myself as I sit here trying to keep occupied so as to forget the pain for a while. Not easy.

I used to think it was cool that I had been born with hypermobile joints, after all I was the one at school who could do the splits, I was the one who could high kick above my head, I was the one who could wrap my legs around my neck and walk on my hands, tied up in knots. I was the one who used to make people pull a face and hide their eyes when I pulled my thumb down to my wrist or turned my arms backwards so that my hand faced in the wrong direction. I am now the one who wishes I could never have done any of those things. I am the one in pain.