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Hi everyone! I am completely desperate for help so thought I would post on here just to see if anyone else has experienced what I am or if anyone has any thoughts on what it could be. Prepare for a very long history.
So I am a 23 year old girl. I have been having chronic back pain for the past 6 years now. The back pain started when I was 16/17 and on roacutine for acne. Some of the side effects listed were back problems and joint problems. I started to have really bad side effects physically in my skin and back pain after almost two years on the medicine so was taken off. Since then the back pain has gradually worsened to the point that it's honestly a chore just to get through one day and I can't remember the last time I wasn't in pain.
The first few times I went to see the doctor I was told it was muscle pain etc and then finally was referred to a physiotherapist. When I went to the PT I was told I had a leg length discrepancy and according to them it was blatantly obvious. They said that my body looked out of alignment, my posture dropped slightly to one side, I had more muscular definition in one side of my body than the other (bum, legs etc) because I was constantly leaning on one side to make up for the length difference. I was referred to orthopaedics(?) and was fitted with an insole which didn't help at all. I have since been told by 3 specialists that I have a leg length discrepancy and 3 have told me that I don't. I have been sent to rheumatology who done tests and told me I don't have arthritis. I then went to another rheumatologist who told me he thinks I have joint hypermobility, handed me a pamphlet, referred me to a physio and made an appointment for a year later. The physio is not helping at all, in fact I feel it's making the pain worse.
I can't sit in a chair without a supporting back for 1 minute without feeling unbearable pain, if I'm on my feet for more than four hours I get horrendous pain in my ankles and heels to the point that trying to lift them off the floor is unbearable and I have to shuffle my feet along the floor. I walk with a limp. If I sit down for five minutes I can't lift my legs to take steps, my body becomes so stiff and my lower back honestly feels like its incapacitated. I get pins and needles in my legs and feet alot and when I'm walking and put my right foot on the ground I often get this pain in my lower back, it's like nerves twitching and my legs buckle to the point that I just slump on the floor in a heap. It leaves me terrified to take my next step. I have been sent for an MRI and was told I had bulges in my discs but that it shouldn't cause any harm or make a difference to my life. More recently I went to an osteopath who told me that I without doubt do not have joint hypermobility and am nowhere near as mobile as I should be to get that disgnosis. I can't tell you how many times I've been to the doctor and been told that joint hypermobility is a disgnosis of exclusion and there's no tests that can be done. I tell them I can't walk, I'm in constant agony and physio makes it worse and I'm just given more pain killers and told to keep attending physio. Recently the pain has spread to my hips and I was given an X Ray. I've just received a letter with the results of my X Ray which say that my right hip joint is shallower than it should be for someone my age but there's nothing that they can do for me.
I am honestly at my wits end. I feel like I've been screaming for help and no one is listening to me. When I ask to be referred to someone else I'm told that I can only be referred to a rheumatologist as that's the only person that can help me but I need to wait for my years appointment. I feel embarrassed because I don't want to seem too dramatic but this is ruining my life. Every day I wake up in pain and it's constant and stops me from doing so much. I just burst into tears when I got my X Ray results because I'm sick to death of hearing that there's nothing that can be done for me.
If anyone has any advice or suggestions please let me know, I'm so desperate.
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