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.

THE GREAT WARDROBE CLEAR OUT.

It has taken me 4 days to finish sorting out my wardrobe and drawers. Not because I have lots and lots of clothes but due to the fact that I find it difficult and painful to do repetitive movements or to sit on uncomfortable chairs or a seat without a backrest. Standing for any length of time is also out of the question, hence the reason why it has taken such a long time to sort out my belongings! I am very pleased to have got rid of 4 bin bags of old clothes and bits and pieces and now I have tidy drawers and a wardrobe that I can actually find things in! Having to pace myself when I do anything is a pain, but the sense of achievement when I finish is great. I am rather a hoarder, and a perpetual dieter, so my weight rises and falls all the time, and I have differing sizes in things! There were, however, some things in my wardrobe that I have literally had for years, and I kept them thinking and hoping that one day I would get into them again! Never going to happen, I differ a stone or two, but I doubt I would get into clothes so much smaller, though one can hope, and besides by the time I lost enough weight they would be completely out of fashion!! So I have been ruthless for onces, and discarded anything I have not worn in a year and am unlikely to wear ever again realistically! Although I did this clear out over 4 days it has still taken its toll and I am still in some pain, but I comfort myself by saying perhaps not in as much pain as I could be if I had not taken my time and paced my activity. Its the only way to cope, I have realised, when you have ehlers danlos hypermobility syndrome.

OUCH

I decided to sort out my wardrobe this morning, it had rather a lot of things in I either don`t wear now, or cannot get into any longer, and I can`t find anything. I am quite a hoarder so I decided to be ruthless and get rid of stuff I have not worn for a year or so and have no intention realistically of wearing again. The problem is that now I have a large pile of discarded unwanted clothes on my bedroom floor and have done too much so I can`t find the energy, or the pain free movement, to be able to fold them and put them into bags. I did take one bag up and then realised it would not all fit into that one bag, but by the time I had walked downstairs to fetch it, and then slowly and painfully climbed the stairs again, I was incapable of putting much into it. I tried valiently to pop a few bits and pieces into the bag, folding them as I did in preparation to take them to a charity shop, but the pain did get the better of me in the end and I was forced to give up and leave them where they lie for now. I have to pace myself in what I do and this morning I am afraid I was too enthusiastic in my endeavours and over did it, which was my own fault. I feel better now though that my wardrobe holds fewer clothes, clothes that I can fit into and which I wear all the time, it is an achievement for me to get it sorted and it is frustrating that I am now unable to quite finish the job I started, due to my EDS hypermobility, arthritis and pain.