Hi, my name is Saireen! How can I get my spine injuries diagnosed?

Saireen
Saireen Online Community Member Posts: 6 Listener

I suffer from multiple chronic back pains in lumbar from a fall,  coccyx from another fall and I felt my mid spine move and bled, and mid thoracic excruciating pain after a car accident. As well as peripheral neuropathy symptoms. Doctors have refused to offer me an alternative MRI scan I wanted the Doughnut MRI scan I would not feel claustrophobic in that one but they have refused and left me suffering instead. Pain meds mainly mental health tablets have not taken edge off pains. Only Amitriptaline for nerve issues has taken some edge off. Can anybody here advise how I can get my spine injuries diagnosed please, as I suffer excruciating daily pains and I am on my own so  I struggle with my day to day and finding it very difficult to work at a work station even with reaosnbale adjustments some of which still need amending improving to support my conditions properly. Thank you in advance. I am with Rethinking Pain as doctors refused to refer me to Pain Management and Rheumatology. Rethinking Pain simply makes me do exercises and change diet but end up in even more pain from exercises making life very difficult on own. 

Comments

  • Saireen
    Saireen Online Community Member Posts: 6 Listener

    Hello is there any advice for me please? Thank you.

  • Rosie_Scope
    Rosie_Scope Posts: 6,558 Scope Online Community Coordinator
    edited May 2024

    Hello @Saireen, sorry you haven't had a reply to your post yet. I'll move it over into a different section where hopefully more members can find it and offer some thoughts.

    Could you perhaps ask your GP for a second opinion for your spinal problems? I know that's not always possible, but could be worth a try to see if a different team might have any other ideas for you. Sorry you're in so much pain at the moment, I hope you find a way forward soon 🙂

  • Saireen
    Saireen Online Community Member Posts: 6 Listener

    Thank you so much @Rosie_Scope. I will ask GP for a second opinion and to refer me to rheumatology who provide therpaies for fibromyalgia i believe.

    I did pilates this morning and then hadn't changed posture much as work equipment makes changing leg posture difficult so I ended up exhausted fatigued drained and tired all day. I got nothing done.

    I have informed work the set up they provided me is not working for me and is exacerbating conditions so they will probably look intit.t as I have asked them to give me paid leave whilst they get the adjustments in place,..

    as the more I use it the weaker my legs and body feel because I get stiffness bloatedness tingling pins needles and pain in legs and feet.

    And when I get up from work chair because legs were not able to change posture every few minutes and leg rest does not align with chair too so there is a gap that strains legs and spine..

    It's very difficult living on own with chronic pain that causes chronic fatigue and tiredness and still expected to work in this condition. it's very stressful trying to explain to people how it impacts.

  • onedayatatime
    onedayatatime Online Community Member Posts: 239 Empowering

    Hello @Saireen . I'm very sorry you haven't been able to get a proper diagnosis and it does sound as though you need to see some form of consultant. I understand how the MRI scans can be quite claustrophobic. I have heard of some form of sedation that can be offered but I don't know if that is an option with the NHS.

    It personally took me a couple of years to finally be referred to a consultant for my spine, mainly due to it being around the time of COVID. It was actually the podiatry team and not my GP who had me referred to a consultant. When podiatry referred me to see a consultant, I was able to book through the NHS e-referral system online and was given the option of various hospitals. The consultant then requested MRIs.

    My thinking is that if somehow you can get further than your GP and get to the point of booking to see a consultant, then perhaps the choice of hospitals available may either offer sedation for an MRI scan or have the doughnut type machine you mentioned.

    Perhaps a referral to the rheumatology dept may eventually put you on the road to seeing and receiving the help you need.

  • Cantilip
    Cantilip Online Community Member Posts: 621 Empowering

    OK, you have had three distinct episodes, two falls and a car-accident, and they are refusing to refer you? Not at all sure that's on but I can imagine a scenario where the MRI is the block. Is that the case, that your GP won't refer you until they have the result of the scan?

    You do know you can always ask them to halt the scan? In my case the problem was excruciating pain in my shoulders preventing me lying flat without squealing. First MRI had to be abandoned. Second time it wasn't completed but they did have enough pix, as I recall it was 20 mins out of about half a hour.

  • Saireen
    Saireen Online Community Member Posts: 6 Listener

    Hello both. Thank you so much for your replies and I'm sorry you had to go through so much too before getting anywhere.

    My Conditions have been deteriorating rapidly since 2019 but had pain conditions since 1993!

    And yes no diagnosis as such of what I actually injured in those falls and accident; and why has it not healed? I can feel dent in my thoracic spine and I can feel a possible herniated disc In lumbar also sore coccyx with some numbness.

    Yes the MRI was the block and they could have offered me sedation but didn't! So I ended up having a 3 hour panic attack from them putting me in the narrow mri! I had to get out.

    I was at the hospital for some scans for something else a week ago and I spoke to a radiologist regarding MRIs and that GPs won't offer any alternatives. She informed me the doughnut one will not give best results but said there is a new MRI a wider one to fit upto 20kg. She said I should ask GP to refer me to that one and to give me sedation too. She also offered to hold my hand whilst I'm in it if I book it on a Sunday when she is in work. So that's my next step. She said it has a big TV screen they can give me something to watch and will keep me in 15mins most likely. So that's my next step to ask GP as mobility is worsening.

    My Conditions have deteriorated more in past month I've just had to arrange a cleaner and I had alot of difficulty getting a wash due to carrying too many pains in my body and they cause fatigue which means I get dysfunctional. I rest most of the day.

    My GP rang me yesterday and said she has referred me to Rheumatologyand will see what they say.

    Hopefully as you say if i push them more i may get a proper diagnosis as they just keep guessing they have no idea. But I can feel something is very wrong. It's too much pain to love with daily.

    Thank you I will update.

  • Jimm_Alumni
    Jimm_Alumni Scope alumni Posts: 5,713 Championing

    😊Hopefully you don't have to wait too long @Saireen, please do keep us updated on how you're doing

  • Jimm_Alumni
    Jimm_Alumni Scope alumni Posts: 5,713 Championing
  • onedayatatime
    onedayatatime Online Community Member Posts: 239 Empowering

    Hopefully you'll make some progress and get the MRI done. You do need it. Perhaps do a little research and find what hospitals near you have the machine recommended or offer sedation. Because of long waiting lists, the NHS can also refer you to some private hospitals. So also research those. Let us know how you get on and hopefully you won't have to wait too long.

  • Saireen
    Saireen Online Community Member Posts: 6 Listener

    Hello

    Thank you. So far I have managed to get social services to refer me for a full care assessment to see what if anything they can do and they are also speaking with my doctors to see what they can and are doing for me. The doctors confirmed they have referred me to MSK rheumatologist and have asked them to check me for arthritis when I have asked that they need to help me with my Fibromyalgia symptoms. Let's see what happens! I don't know if I have any kind of arthritis i need help with the peripheral neuropathy symptoms as that is what appears to reduce my mobility I'm not sure.

  • Rosie_Scope
    Rosie_Scope Posts: 6,558 Scope Online Community Coordinator

    Fingers crossed it's the start of getting some more support and symptom management @Saireen. Keep us updated with how you're getting on 😊

  • Saireen
    Saireen Online Community Member Posts: 6 Listener

    Thank you yes fingers crossed.