Undiagnosed condition
My daughter wrote this for our GP, we had been attending the Doctor's surgery for many years. Children sometimes suffer for years with an undiagnosed condition.
This has been very difficult for me to write because I deliberately don’t think about things because I find that is the best way to cope. I would like to know what is wrong with me because I feel that people think I am making a fuss about nothing when I know I am in constant pain.
I get pains in my joints pretty much every day, sometimes it might be all of the day sometimes just part of the day. I have had pains since I was a young child. My mum says I had blood tests when I was little but that they came back clear.
I always get severe period pains before, and during my periods. I get the same pains at different of the month. I have been tested for celiac but it came back clear. My joints hurt more during my time of the month and the headaches, dizziness and sickness is worse. I feel slightly nauseous most of the time, but sometimes it is more severe than on other occasions. I get headaches every day; they pound and make me feel dizzy. The doctor thought it was migraine but didn’t want to start strong medication at such a young age.
I get tingling and an electric shock sensation in my spine, normally between my shoulder blades. This happens if I get too hot or cold, though it does happen at other times too. This doesn’t happen every day but seems to happen randomly. I get pain along my spine every day. My neck aches all the time but more so when I stand up. Sometimes everything really hurts and I feel really ill and dizzy. I feel cold most of the time; I find my electric blanket helps me at night. When I get too cold I will shiver for ages afterwards. My feet and hands get cold and it is hard to get them warm.
I have had tendonitis for a few years now, this can be very painful. My wrists hurt all of the time. I have had to give up the violin, piano and vaulting because as soon as I do any of these things the pain becomes really bad. When it is really bad it hurt my wrists, fingers and goes up to my elbow.
My fingers and thumb come out of joint slightly and go back in a few times a week. When this happens it hurts for a few days afterwards. I have to use voice recognition software because typing and writing hurts me. I wear hand splints to support my hands when I do some activities, but this often doesn’t help because the ones I have restrict my movements. I hurt my wrists when I swim but I haven’t found anything that helps yet. I find everyday tasks difficult; things like wiping the table with a cloth will hurt my wrists.
I have continually sprained my ankle, when I did vaulting I wore a tubi-grip to protect them. I generally only wear flat shoes for the same reason and I find boots the most comfortable footwear. However, recently my mother bought me some barefoot shoes, and they have helped a great deal. I have very sore toes; the big toes are the worst. They were injured for no reason and have been hurting for about a year. My big toe came out of joint recently, I was just walking and it hurt, it came out of the socket slightly and then went back in on its own.
My hip joint often feels like it’s coming out this hurts for a few days, but because it happens a lot it constantly hurts. My knee caps feel like they are moving on their own, sometimes when I put my finger on it, it feels like it’s creaking. My shoulders and elbows hurt and crack but don’t come out. I feel thirsty all the time, but the doctor tested me for diabetes but it came back clear.
I start to feel full after the first few mouthfuls of food, even if I was starving before I started to eat. I eat little and often. I feel like the food needs water to wash it down but the drink always fills me up so I can’t eat that much more of the food. I get stomach cramps every day, sometimes they are worse than others. Ibuprofen helps slightly but it doesn’t really take away the pain. I try to ignore the pain, I see the pain as green blobs with legs, I will close them behind a door and this help me to ignore the pain.
Sometimes the pain is too much to ignore, particularly when I have a headache. I don’t join in active games with my friends because I will always end up hurting myself and it takes ages for it to heal. I seem to fall over an awful lot, more than once a day. I struggle to get to sleep, sometimes it’s because of the pain but often my brain is too active to fall asleep. Having a bath before bedtime helps me to sleep. But I still feel as though I haven’t slept well a number of nights a week.
My Pilates teacher says my back is very flexible and she has never known anyone who can bend to the side as far as I can. She says I tense my neck and shoulders while I am doing some of the exercises. I can touch my wrist with my thumb.
I am very short sighted, I have convergence insufficiency. When I was younger I was unable to see fully and for a time the glasses wouldn’t correct my sight. I had a scan, but the results came back clear apart from the blocked sinuses that are caused by a dust mite allergy.
This has been very difficult for me to write because I deliberately don’t think about things because I find that is the best way to cope. I would like to know what is wrong with me because I feel that people think I am making a fuss about nothing when I know I am in constant pain.
I get pains in my joints pretty much every day, sometimes it might be all of the day sometimes just part of the day. I have had pains since I was a young child. My mum says I had blood tests when I was little but that they came back clear.
I always get severe period pains before, and during my periods. I get the same pains at different of the month. I have been tested for celiac but it came back clear. My joints hurt more during my time of the month and the headaches, dizziness and sickness is worse. I feel slightly nauseous most of the time, but sometimes it is more severe than on other occasions. I get headaches every day; they pound and make me feel dizzy. The doctor thought it was migraine but didn’t want to start strong medication at such a young age.
I get tingling and an electric shock sensation in my spine, normally between my shoulder blades. This happens if I get too hot or cold, though it does happen at other times too. This doesn’t happen every day but seems to happen randomly. I get pain along my spine every day. My neck aches all the time but more so when I stand up. Sometimes everything really hurts and I feel really ill and dizzy. I feel cold most of the time; I find my electric blanket helps me at night. When I get too cold I will shiver for ages afterwards. My feet and hands get cold and it is hard to get them warm.
I have had tendonitis for a few years now, this can be very painful. My wrists hurt all of the time. I have had to give up the violin, piano and vaulting because as soon as I do any of these things the pain becomes really bad. When it is really bad it hurt my wrists, fingers and goes up to my elbow.
Esther doing some physio
My fingers and thumb come out of joint slightly and go back in a few times a week. When this happens it hurts for a few days afterwards. I have to use voice recognition software because typing and writing hurts me. I wear hand splints to support my hands when I do some activities, but this often doesn’t help because the ones I have restrict my movements. I hurt my wrists when I swim but I haven’t found anything that helps yet. I find everyday tasks difficult; things like wiping the table with a cloth will hurt my wrists.
I have continually sprained my ankle, when I did vaulting I wore a tubi-grip to protect them. I generally only wear flat shoes for the same reason and I find boots the most comfortable footwear. However, recently my mother bought me some barefoot shoes, and they have helped a great deal. I have very sore toes; the big toes are the worst. They were injured for no reason and have been hurting for about a year. My big toe came out of joint recently, I was just walking and it hurt, it came out of the socket slightly and then went back in on its own.
My hip joint often feels like it’s coming out this hurts for a few days, but because it happens a lot it constantly hurts. My knee caps feel like they are moving on their own, sometimes when I put my finger on it, it feels like it’s creaking. My shoulders and elbows hurt and crack but don’t come out. I feel thirsty all the time, but the doctor tested me for diabetes but it came back clear.
I start to feel full after the first few mouthfuls of food, even if I was starving before I started to eat. I eat little and often. I feel like the food needs water to wash it down but the drink always fills me up so I can’t eat that much more of the food. I get stomach cramps every day, sometimes they are worse than others. Ibuprofen helps slightly but it doesn’t really take away the pain. I try to ignore the pain, I see the pain as green blobs with legs, I will close them behind a door and this help me to ignore the pain.
Sometimes the pain is too much to ignore, particularly when I have a headache. I don’t join in active games with my friends because I will always end up hurting myself and it takes ages for it to heal. I seem to fall over an awful lot, more than once a day. I struggle to get to sleep, sometimes it’s because of the pain but often my brain is too active to fall asleep. Having a bath before bedtime helps me to sleep. But I still feel as though I haven’t slept well a number of nights a week.
My Pilates teacher says my back is very flexible and she has never known anyone who can bend to the side as far as I can. She says I tense my neck and shoulders while I am doing some of the exercises. I can touch my wrist with my thumb.
I am very short sighted, I have convergence insufficiency. When I was younger I was unable to see fully and for a time the glasses wouldn’t correct my sight. I had a scan, but the results came back clear apart from the blocked sinuses that are caused by a dust mite allergy.
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