Difficulty getting diagnosed?

Hi, I'm new here and wondered if anyone has any advice on getting diagnosed. I am 21, and have had horrendously bad back pain for over four years and counting. It has gradually gotten worse and worse till ti is utterly unbearable and i cannot function. I also now have horrible pain in my legs (particularly right calf) and my feet too, especially at night. Despite all this, I have been dismissed by endless doctors; no one will help me, or even attempt to diagnose me. All they do is tell me 'it's probably not serious' and ignore me. I cannot go on like this, the pain is so so awful beyond description. If anyone knows anything that might help me to get a diagnosis and then be able to move forward, please, please, let me know. Thank you.

31 Replies

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  • Be persistent is the only thing I can suggest. It took me 4 years to get a diagnosis for back pain. Write down all your symptoms, when pain is worst/ better. What medication you have tried and how it is affecting day to day life. Hope you get help soon x

  • hi, sorry to hear your suffering. I had exactly the same problem years ago and it literally drove me nuts!!! I was even called a 'hysterical female' in my notes. Horrific attitude from some consultants. I was proved right in the end. Root nerve damage in my lumbar region and I receive injections in my facets which makes movement bearable. You must be strong and keep insisting they do further tests. Getting a different consultant too. Strangely though if you went private I have no doubt a diagnosis would be made. Really good luck, just don't give up no matter how tough it gets. 💋

  • Hi. Have you been referred for xray at least ? After 4 years of pain there should be a diagnosis of the source of the pain. Treatment ? Pain medication I would have thought.

    With this length og time your pain is definatEly considered chronic so I would ask for referral to a pain management clinic.

    It seems almost unbelievable that a doctor would say that something was probably not serious without some sort of investigation into what is happening. Perhaps a change of GP might help

    I think you will have to be pushing for a diagnosis, let us know how you get on.

    Dee

  • Hello Pencil

    Your pain sounds like mine but mine was in leg and is now in leg and feet.

    First is your pain burning and of the nerve pain type or is it muscular pain which is from tight or strained muscles? If it is of the nerve type, you should in any case have a full flex extension Xray performed and an MRI which will get your lower thoracic to full lumbar spine. These two images will allow for the specialist to be able to look for anything that may be causing pressure on the nerves and cord. In my case I had advanced stenosis at L2/L3 and a large disc bulge further up at T12 L1. You may also have Scoliosis which could be causing your issues. In any event, if you have had persistent pain, you need the imaging to do a proper diagnosis. At least that is how it is done in the USA where I live. I hope the imaging comes back normal for you. Trust me, you do not want to have back surgery if you can avoid it. I had surgery a year ago and afterward I developed nerve burning pain in my feet! Do you have calf fasciculations? Please find a proper specialist for a complete diagnosis. In the meantime you should avoid bending lifting and twisting and try to use cold packs to see if you can get relief. If a specialist mentions the need for surgery please get several opinions and include independent sources. I am sure you will find answers and relief. Educate yourself on spinal anatomy and problems of the spine as well. Knowledge is power.

    Best of luck

    Jerry

  • Hi.

    I'm very very sorry.

    Have you been referred/been seen in a Pain clinic ???

    Has your GP said those things (not to worry)

    If so can you find a new one ???

    Are you on any meds for your pain ?????

    Please let me know.

    Steve.

  • Hi Steve, Not on any meds and not overly keen to try them, but even that would be a start! Tried multiple GPs without luck, and was referred to pain management once only to be given codeine which made me vomit and i couldn't take it (not that it touched the pain either) abd then was sent to physio (no help again) and since then have been utterly ignored.

  • Hi.

    How are you doing with no meds pain wise ???

    Yes they do say meds are not any good with chronic pain.

    We are getting more like USA every day.

    They have currently got a "ticking time bomb" with Optoids.

    Every gp just think these are the right way to treat pain.

    Yes I'm currently under 3 pain clinics (Birmingham, Oxford, Liverpool)

    None off them are any good to be honest.

    No physio's made me worse.

    As for gp's "Well"

    Steve.

  • Not good really. I have to constantly rely on heat or ice but to the point where i basically have to burn myself or freeze myself because otherwise it doesn't even touch the pain... So i can't really do things like going out much because there is no pain relief. I quite agree about the meds; i don't want the negative side effects (hello, all this is depressing enough without that!) and i don't need my head fogging up either. Same here with physios, totally unhelpful... And ditto gp's. I hope you are able to find some help with your pain too. Have you any techniques for dealing with pain given the uselessness of the nhs?

  • Hi.

    "Thanks"

    Where do you get your pain if you don't mind me asking ???

    Does the heat & ice help with your pain ???

    I'm using Hypnotheryapy at the present with great results.

    My pain is all down my right side neck to toe.

    I know that the pain is caused by damaged nerves in my brain & spinal cord.

    My left side is numb & my right side is where the pain is.

    So what I have devised is using a tens machine too create pain.

    I can then switch the pain across from my right side into my left side.

    Fooling my brain totally.

    This works really well but it's a bit scary too start with as I'm taking on my "brain" bid time !!!

    Steve.

  • Lower back all the way down into my legs and feet. Also have hip and shoulder issues, but it is the back and such which is worst. The ice and heat help a bit but only at certain temperatures and obviously it is damaging to my body so i don't like it, but have been left with no choice given unhelpfulness of gp's. Gosh that's really interesting. I am glad that is working for you! I have tried a tens machine but it didn't help me. I hope it keeps working for you, that's good to hear.

  • Hi.

    Now that you mention your lower back it has reminded me that yes I do get pain there as well.

    Sorry but I forgot to mention that I use supports on my neck, hands & feet.

    It takes me ages to get ready, I don't mind though as I know that I will benefit greatly in the end.

    My hands look like I've got boxing gloves on as well.

    Yes I have got loads with my recent ones being wireless so I can now "dance" around my house at my leisure !!!!

    Sorry for going on !!!!

    Steve.

  • Not at all, glad something is helping! Didn't know wireless ones existed, that is really cool!

  • Hi.

    Many many Thanks.

    I have been desperately look for one for years now.

    I had the idea for years now just needed the equipment.

    Now I can put it all in action big time.

    Mind you it is very very weird when my pain switches from one leg to the other

    It's a double whammy as both legs become pain free as the left leg is numb since 1998.

    Mind you my brain goes into melt down but with a little practice is is getting better.

    I just hope that the wireless signal doesn't get interrupted & I start "turning on my head"

    Not a go idea hey !!!!

    Steve.

  • I am glad you are finally finding some relief! I really hope it does keep working for you; maybe there's hope for all of us! I hope your brain keeps adjusting to it and it continues to improve in general.

  • Hi.

    Thank you very much.

    I'm very sorry for going on & on.

    I should/would like to both help & support you if possible please ?????

    Thanks.

    Steve.

  • Aw no not at all, it's really nice to hear other people's stories and see that other people are in the same boat. Thanks, i appreciate it!

  • Hi.

    Yes it is lookingvery very good.

    I will keep plugging away.

    How are things with you ????

    Steve.

  • And that's really good to hear, you deserve to have some pain relief! It's reassuring to hear. And suffering a bit at the moment. I think mostly the worst thing is the constant barriers from doctors, with them not caring and refusing to believe me or help me. At thw moment, it feels like this could be this way forever which depresses me immensely. Sorry for me going on!

  • Hi.

    Thanks. Don't worry I'm very very happy to listern anytime.

    I'm currently working on something even bigger hopefully.

    I will fill you in tomorrow if you want.

    Steve.

  • Thank you, and same to you, any time; it's really helpful just to talk to people and know they actually understand. And yes, I would be really interested to hear about that tomorrow,

    thanks!

  • Hi.

    I'm currently testing a "Medipen"

    This is a CBD natural vaporiser.

    It uses a very small amount off Legal Cannabis Plant with different oils/ flavours.

    I will be rolling this out more from today to check it makes a difference.

    In my small trials indoors it does help big time.

    Steve.

  • Hi again,

    ah wow, that's interesting to hear, I am glad if it seems to be helping you. Let me know how it continues, good luck!

  • Hi.

    Yes I have been using/puffing it most off the day I will give it a few more days.

    "Looks good"

    I'm electrocuting my left leg with the Tens machine to confuse my brain.

    This is switching my pain from one leg to the other. "Spooky"

    Steve.

  • weird how the brain works, huh? but if it's working, then great! Funny how doctors can't seem to work out anything, and yet we sufferers can! Hope you continue with the progress!

  • Hi, I'm sorry to hear of your difficulty. You need to persist with your doc or see another doc. I had been complaining of back pain on and off for years - starting when 19 and was not physically examined in any way till I was X-rayed at 26. They said it showed normal wear and tear but X-Ray's are limited in what they can show. It wasn't till I was 33 that I was diagnosed with Ankylosing spondylitis - an kind of inflammatory arthritis - after My knee swelled up and didn't go down.

    I have got better at getting referrals to specialists when I think it is important. What I do is prepare by writing things down - symptoms, questions etc. If you have researched anything which seems like it may be what is happening to you then see if you can find information from bona fide medical sites to take to discuss. You are not telling doctor what to do but asking them to rule out some causes by referral to a specialist.

    It can be intimidating having to do this kind of negotiation but often with persistence, they will refer on to appropriate specialists. Good luck and best wishes, Irene

  • Yep spondylitis is what I have too and it's painful. Mine due to psoriasis

  • Thanks for the replies everyone. To explain further i have tried 5 GPs and the only one test i was ever given was osteoporrosis which i did not have. I had no further luck. I have tried and tried time and time again and literally no one will take ne seriously even though i remain calm and polite , they completely dismiss me, as though i am making it up. They just will not conisder any tests or even that anything could be wrong, so even after 4 years i am no closer to any idea of what is wrong, let alone any treatment. With every appointment i have written down all symptoms abd timelines and everything, only to have it glanced over and ignored, unofrtunately.

  • Hi, know what your going through. When I first started with my back problems the G.P. I had at the time was quite happy to keep feeding me pain killers. I struggled to work till it got so bad I could not work anymore and all the while my G.P. would not even send me for any referrals.

    Six years ago I moved house, down sized because I was finding it harder and harder to look after my house and garden. I then moved to another G.P. who has been marvellous, cannot do enough to help me, having scans, seeing consultants, but sadly my back is in such a state plus I have curvature of the spine that it is to dangerous to do any surgery and so I have to live with it with the help of a cocktail of drugs. I think if my first G.P. would have acted when he should and before my back got to this state I would not be where I am now.

    So I say to you is your first move is to see your G.P. for second opinions, if you have no joy move G.P. It`s hard but you do have to keep pushing for help.

    Good luck and keep your chin up, don`t let them beat you.

  • check out this website and see if you think you fit the criteria for inflammatory back pain. nass.co.uk/about-as/getting...

    If you do tick most of the things on the list, then copy that list, go back to your GP and say "this has been going on for too long. It wasn't caused by injury. I think I really need to be checked out by a rheumatologist to make sure it isn't inflammatory back pain". If inflammatory back pain does seem to make sense to you, you can also phone the NASS helpline and discuss what to do next with them.

  • NASS helpline is a good idea. I found them very helpful in the past.

  • Hi, I'm new here too. I'm 51 and a mum of two grown up lads of 21 and 24. I've been unable to work for three months now after suffering sudden onset severe low back pain. I paid £320 for a private MRI scan & diagnosed as having two torn discs in my lower spine. I'm shocked you have been suffering for so long without a proper diagnosis and appropriate treatment. As other have said the priority for you is to have an accurate diagnosis as soon as possible. If you can afford it ask your GP to refer you straightaway for an MRI scan at your nearest private hospital. If you can't afford it then request a referral on the NHS to see a neurosurgeon or orthopaedic & spinal surgeon and insist on it, explain your symptoms and say you can't cope any longer. It may help to go along with a parent or close friend for moral support. Once you have a diagnosis you can start getting treatment, possibly including physio,, appropriate medication and injection therapy. I think surgery is only considered as a last resort. I have tried physio but unfortunately can't tolerate it at the moment. I saw a new GP who was fantastic and assured me he would help manage my pain until I can see a surgeon for injections. Up until now I've been taking ibuprofen and co-codamol which have only helped a bit. The new GP has upped the dosage of these and added in Amitriptyline at night 10mg to start with and I can honestly say that after only two nights I have 80 per cent pain relief, a miracle after 12 weeks of feeling like my life was over and something I had almost given up thinking was possible. This painkiller specifically targets nerve irritation. I really do sympathise with you it's so very hard to cope with constant pain, it dominates every aspect of your life but help is out there, it's a case of getting the right help for your particular issue so diagnosis is key. It's hard for anyone but you are so young to be in this situation so my advice is to be very insistent and refuse to be fobbed off any longer, take care xxx

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