Bone scan.

Full body bone scan.

On Friday I had my annual visit to my surgeon, I see him every year for 10 years following my diagnosis of breast cancer. He came into the room and asked how I was and I said I was fine apart from the fact that my arthritis was quite bad. Oh how I wish I had kept my mouth shut, he asked me where the pain is, has it become very bad, do I have pain elsewhere? The pain in my lower back is with me all the time, I also have it in my knees, ankles sometimes, shoulder, hips and at times in my upper back. He popped out of the room then appeared a few minutes later, he thinks I should have a full body bone scan, just in case, was that okay? Can`t say I fancy the idea, but then he is the specialist so I should trust his judgement, he knows what he is talking about. You should also have an xray of the lower back, we can arrange for you to have the xray today, and you will receive a letter to go back for the bone scan soon he said. So off I went to have a back xray which thankfully did not take too long, the bone scan will take a lot longer. I have heard what happens and don`t really fancy it, but needs must. The doctor freaked me out a little when he said if there is anything to discuss you will receive a letter to come back and see me to talk about it. Hopefully it is just my arthritis that is troubling me, I cannot think of the possibility that it could be anything more, so I won`t. Comes to something when you want to hear the news that your spine is crumbling!

The invisible and the pain.

Ehlers danlos and hypermobility syndrome. What a mouthful! I suppose it needs a really long name because it covers a multitude of symptoms! The collagen, which is at fault ofcourse, is not only in skin, in joints, but in every part of the body, and so it affects all kinds of things. The thing is, it is largely invisible, and so if you do not walk with a stick, sit in a wheelchair, or wear splints or supports, others do not realise what problems you have. If you think about it when a joint over extends, or bends in a way it is not meant to, it will become worn and pain is bound to result. If the organs of the body are affected, which they frequently are, you can have all kinds of problems with your heart, stomach, bowels, bladder. After all if the walls of, say the bladder, are stretched you can well imagine the trouble it could cause, lets just say Tena lady and leave it at that. I have had physical problems since childhood, especially with my joints, my knees would swell up and be painful but my doctor would diagnose fluid on the knee. I would go to school with a leg bandaged from ankle to thigh! My joints have always sublaxed, or partly dislocated to those who are unaware, and I would find my hip would give way whilst walking home from school, making me fall to the floor. The lollipop lady often picked me up when I suddenly collapsed in front of her, and sat me on the concrete bollard at the roadside until I got myself together. She presumed I tripped I expect, but I did not, my leg would just give way underneath me, and would not support me. There was nothing I could do to stop it happening. I would tell my mom, but she just thought I was clumsy and kept tripping over my own feet! The number of times my knee or ankle has given way, quite a few times I have plunged down the stairs, unable to save myself or stop it happening. These days I have a rail either side, which I cling on to as I walk downstairs carefully. My hip is often very painful, especially if it has sublaxed just because I turned over in bed! I walk with a stick now, my ankles and knees often "go" and so it is easier and safer, I don`t want to fall. My spine is unstable, and painful all the time, not helped by a fall I had some years ago when I slipped on black ice. Now I have trouble with such a lot of joints, I can only raise my left arm some of the way above my head as the shoulder is hurting these days. My fingers ache and I can no longer sew as I used to do. It is easier to type than to write for too long holding a small pen. I can not stand in the kitchen making the elaborate cakes I once did, standing causes my back pain to go into overdrive and my fingers are unable to squeeze a piping bag to ice the cakes. My mobility is severely restricted, walking causes such pain it is easier not to do it. My life is a world of pain that I try to hide from others, I do not want those I love and who love me to know my suffering.

We need help.

Its about time the health professionals got to grips with ehlers danlos syndrome. After all it was discovered in 1963 so by now, surely, it should not be such a mystery to the medical people who should know all about it. Its a complex subject I know, and there are many different types, but if you have it, its no joke, and it would be nice to be able to discuss options such as exercise and pain relief without the medical doctor looking at you as though they do not believe what you are saying. It is very isolating, personally I have suffered in various different ways for many years, and now my arthritis in lots of my joints is a real bugbear for me, it is very debilitating and I often feel trapped within the confines of my own body. As it does not show, like a broken arm or leg, people are unaware of the problems faced by those with this illness but they are very real, and very painful. Ehlers danlos syndrome is a problem with collegan in the body and joints wear too quickly as they are overused, it can affect internal organs, eyes, ears, heart, you name it. Please medical fraternity, do some research, we need help!

A pain in the ......................

Feeling a bit blue so writing in blue. Nobody can describe the affect of constant pain on a person, unless you have the misfortune to suffer constant and unremitting pain you would not understand what it is to go through it. With ehlers danlos syndrome pain is part of every day life, I can turn over in bed and my hip will sublax (partly dislocate), unfortunately this is something which happens often. I already have back pain as a constant reminder of my health problems, my knees crunch and grind and if I were to attempt to kneel down the pain would be terrible, I know I found out the hard way! My hips now give me constant problems, and often give way on me, making me walk in a very odd way. For the past few months my left shoulder has been causing problems and now my right one has joined in. Basically I am dropping to pieces. Ehlers danlos hypermobility syndrome is a pain in the.................................

GETTING STUCK!! Ehlers danlos strikes again!

I had the most horrible experience yesterday, most people would not find it so awful, after all it would not happen to most people, but because of my joints it happened to me, and I was mortified and panicked that such a simple movement could go so wrong.

I crouched down to see to something, I did it without thinking, but as soon as I was down in the crouched position I realised that I could not rise again. My husband saw what I was about to do and tried to warn me, but he was too late, I had already done it. Son in law grabbed my arm and tried to help me up but my knees had locked and I simply could not get the strength to push my legs upwards. My husband joined in, grabbing me underneath the arms and tried to pull but I was in such an awkward position that he could not get me up either and it took a third person to hold me under my left elbow to give me the leverage I needed to get back on to my feet! I know I carry too much weight, that probably had something to do with not being able to pick me up so as you can imagine I was so upset that it had taken three people to help me to rise. My legs were weak and shaking by the time I got back on my feet and I had to stand holding on to the windowsill for some time to gather myself before I could walk back to my seat and thankfully sink into the chair. I must have gone into panic mode, I can remember saying "help me, help me" over and over and it seemed an age before I stood up again though it was probably only a minute or two. My confidence is completely knocked and I am worried that if I should take a fall I would not be able to get back on my feet again. Both of my knees are gone, they grind and click and if I kneel it is absolute agony so the thought of having to get on to my knees is not a good one, though if I had been on my own when I crouched down I think the only option would have been to somehow roll myself on to my back, and then on to my side and crawl to the nearest object to be able to push my legs into position, whether I could do that or not remains to be seen, and I certainly do not want to try it just to see if I can manage! It must seem like such a simple thing to anyone else, and you probably are wondering what the fuss is about, but it has really worried me and my confidence is not good right now.

I don`t want to be this way.

I am really struggling, normally I put a face on things and pretend I am fine so that not many people realise how bad I am with walking and with the pain I have to put up with, but lately I am finding it harder and harder to pretend. I am not all right, I am in pain all the time, and just walking around my house is a problem for me, my back is painful, my hips hurt and the pain is wearing me out. My knees hurt, my ankles give way and my feet are painful, the toes seem to contract, its very strange and very painful. Even my fingers are giving me problems, the knuckles are swollen and hurt, I am no longer able to get my rings on the correct fingers as I cannot get them past my knuckles! My left shoulder grinds and crunches and is very painful and it seems to affect my arms which seem heavy and which hurt. I really don`t know what to do about it, and how to cope, to be honest, everything is getting on top of me. I never thought I would say this, but I can see myself ending up in a wheelchair, my walking leaves an awful lot to be desired, there seems no end to this pain, medication does not help, or not much, I see people walk past me who are much much older than myself and I feel awful, I am 56 years old and I don`t want to be this way.

Everything hurts - Ehlers danlos hypermobility syndrome.

Everything is hurting at the moment, my left knee keeps on giving way, I keep going over on my ankle and my back is giving me some real problems, why do I have all these things go at once? I am thinking it is because when my knee gives me problems I must walk in a slightly different way to compensate which in turns causes my ankle to give way and then ofcourse my spine is out of alignment and that hurts too. My left shoulder is so painful at the moment that I am having a problem lying on that side, but when I turn over to lie on my right side my hips sublaxes and I am in pain with that! I had to lie on my back the other night, never a good position for me, my legs go completely numb and I cannot feel them so when I try and get up it is a real struggle! Just to add to my problems my internal organs play me up, mainly my bowel, whether it is a result of ehlers danlos hypermobility syndrome I am not sure, but having read some reports on their website about this very problem I would not be surprised. I have told my doctor quite a few times about the trouble I am having but he just prescribes loperamide which I have been taking for quite some time. I think I get immune to it after a while as it stops working properly and I am back to square one, so I have to stop using it for a while and then I am confined to the house - I won`t go into details, use your imagination! Its not nice. All in all this EDHS is not nice, I am in pain 24/7 and often a new pain will pop up unexpectedly and sometimes an old pain will fade, whether due to the joint going back into place or something else I`m not sure. I never know what the next day will bring, and not in a nice way.