Undiagnosed/misdiagnosed chronic back pain

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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.

Thanks x

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7 Replies

  • Posted

    I am sorry your sufffering all this pain and being so young. I do not know what i causing all this pain and am wondering if a Neuroligist may be something to consider as they look at everything . Only other option i can think of is if you can afford to go private to see someone quicker. Thou we shouldn't have to. It seems a long wait a year. Are you in the UK? Have you being given any meds to help with any of the pain, are you working? I hope that someone can offer some other advice for you. It is difficult as we are not Doctors here so we cannot diagnose. Hope you find out sooner rather than later.

    All the best.

    Elizabeth. 

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    • Posted

      Hi Elizabeth,

      Thanks for taking the time to reply to me. Yes I'm from Glasgow and I've been given naproxen and cocodamol to help with the pain but neither take ge pain away completely and I'm still in agony at the end of the day. Yeah I work, I actually have two jobs as I'm putting myself through a postgrad at uni. I work as a sales assistant and as a support worker for children with autism so I spend all of my working hours on my feet which obviously doesn't help the pain but I can't afford to give up my jobs. I love working so would hate to have to give up either of my jobs plus I wouldn't be able to continue with my postgrad studies. I'm trying so hard not to let the pain affect my life more than it does already. I did consider going private but my best friend is a doctor and advised me against it. She said that it would cost me a fortune just to get the same tests that I would get on the NHS, so she advised me to ask to be referred to a pain clinic to manage the pain. Really gets me down though to think that I most likely will have to just deal with it and try to manage it and will never be pain free. The last rheumatologist told me that I would never be pain free and I was completely depressed about it so I'm just determined to try and find some help or at least other sufferers. It's strange as I've been looking over forums for years trying to see if anyone has experienced the same pains as me and I'm yet to find someone. Praying this forum can help. Thank you very much for your well wishes, I really appreciate it smile

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    • Posted

      Why i replied to your post is because i also suffer chronic pain, thou mine is from arthritis. So i understand constant pain and as i had septic artthritis since aged 11 and osteoarthritis all of my adult life. I also understand that it seems no one is listening. I am fortunate that i have a good consultant and have under gone a total knee replacement and a revision done by the age of 52. I am now 59 and have now got  osteoarthritis in my right knee, i have today been to the hospital for a steriod injection, my does it hurt. I also was diagnosed at 40 with osteoarthritsi in my lower back. The way you described that sitting is painful, i also find that i am in pain constantly sitting. You say arthritis was ruled out, so it must be something else. The meds your on are the same that i take, naproxen and cocodamol. I also take gaberpentin for nerve pain and amitriptyline to help me sleep. As Holly said the pain clinic is a option to help find the meds that will work best for your pain. Your so young to be suffering so much. I really don't know what to say except some of us here can understand the pain factor, but for you not having a diagnosis must be frustrating as without that at the moment the drs can only treat the symptoms ie pain. Anytime you want to talk about your health, i and others are around. We can support you as best we can at least we will not judge you and we can listen, thou we are all strangers here it's amazing how much we care for others on the forums.

       Sending a big hug.

      Elizabeth.

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  • Posted

    Hi there,

    I can empathise with you but in no way is the pain I suffer the same as yours, and despite my many chronic painful bits ( lower back, nerve pain, wrist,  ...all started with 2 now 3 bulging discs and sciatica in my case ). I did a degree , had 2 children married and had a full time job in Pharma Industry. As Elizabeth suggested if I have a ''gut feeling'' who I may need to see I often ''go private for first appointment'' to get into the system. and most drs are then happy to transfer you to their NHS list. I have done this when after waiting nearly 18 weeks a hospital cancelled a clinic appointment on me, I had a holiday coming up and needed to see someone, so I had no choice, as they were playing games with lists and moving people around, it varies between £150 - £250 where I live anyway to see a consultant private for a first appointment. Other options : Is there a good Pain Clinic at a local hospital ? Whilst this may / may not get you a diagnosis they are less tunnel vision than a consultant in a specific field, and will have other treatments at their disposal that may help with the pain, they may even have heard of a similar case since they cover a more varied patient group. As someone who also lives in chronic pain, I attended a BreathWorks Mindfulness course ( I went to Leeds ) but they are all over UK, look on net, did an 8 week course inc'd'Mindful meditation, cannot recommend enough. Stress and worry does feed the pain cycle and this is one way to help adress it, I am a real sceptic believe me, and whilst not a cure this does help. I know how it feels to think no one understands the pain you are in, can do nothing, I am 41 now but was 33 when it relly started and had to stop working, and lose your direction in life. I ended up on antidepressants, in the end I had no choice, I used to sell them and it was not my plan to ever end up on them myself ! Placebo doesn't work on me either !! I do attend a pain clinic, I have done Minfulness Course ( books good, with CDs better, but if new to it then a small group course is better )....this may at least keep your sanity and reduce ome of your pain in the meantime....I have had so many contradicting opinions over the years, and I worked in the medical arena, that it can be so frustrating. Good luck, hold on, and I hope this may be of some help.

    Take Care, Holly 

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  • Posted

    Hi again,

    I just wanted to say that I know you are young, and I just wanted to say that whilst many meds can be seen as a ''magic bullet'' in the first instance, all have differing side effects in the long term, and these are diff. for diff. people. I do take medication, but be prepared you may not find what works for you straight away.....amitrptiline ( an old style antidepressant ((TCA)), is often used in tiny doses for chronic pain, for some it works and is cheap too, personally I had flu like symptoms and could not tolerate it at all, and I am pretty sturdy when it comes to taking most medication ! I spent 5 years taking pregabalin / gabapentin, used at doffering doses in diff. people, there is little evidence that doses above 1800mg a day inc. the effects only the side effects, I have taken this. However, I was only in my late 30's when I told the drs about it having a negative effect on my memory and language centre of the brain, and it it through people like on this site I realised that I was not the only one, so in summary for the first year after I got over the initial side effects it was a very good helpful medicine, but I have now weaned myself off and still have memory impairment, it upsets me a lot still at 41 so I felt you should know both sids to this medication, not just the initial side effects. It works on GABA receptors in the brain....it has many effects / side effects...worth reading about it if anyone proposes these to you as some find it hard to come off again once on it. I too have had steroid injections in my spine, trigger point injections, done under x-ray at the pain clinic, again efficacy varies over time and from one person to the next. I have varied from ''amazing'' to ''negligible''. If you manage to get a diagnosis clearly that's even better as they can be more targetted in your treatment. Good luck with getting a diagnosis and hopefully something that alleviates some of the pain, I was 19 when I first got an 8 month unrelenting episode of sciatica, and the drs couldn't help me, in the end it settled down, until a few years later......don't give up hope. If you get chance to access a meditation class though I would still rec'd that in the meantime, the calming effect on the body helps release some of the tension that pain builds up

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  • Posted

    hello dear, I am so sorry you have such difficult problemas at young age... I would suggest seeing neurologist, maybe a chiropractor and maybe pain management clinic, maybe anitdepressants and just keep on looking then what could give you some relief, maybe swimming, meditation, accupuncture. I am in pain for last three months. Sometimes I feel that the psychological impact it has is almost worse than the one on my body... good luck girl. ypu will get through it. 
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  • Posted

    Everything you said (except for the end bit about your feet) is my 12 year old daughter exactly. She has gone through the same doctors and diagnosis, except even more and we did MRI scans as well as bone scans. She has had chronic back pain for almost three years and no one can help us. Exercise makes it much worse and she has so much trouble falling asleep. I hope you get a diagnosis soon. Take care
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