need some advice… and to have a rant

[avavs777]

hi all,

i’m new here. i have been diagnosed with scoliosis as well as disc degeneration in my lower back. i recently had an mri scan which i didn’t hear back about for over a week, until my mum called the doctor and he told her that there was an abnormality with one of my hips that he was having an orthopaedist look at. i suffer with lots of aching and spasms in my back and hips every day but my pain has been really bad the past two days and i just don’t know what to do. i went to urgent care a few weeks ago and sat there for 3 hours crying out in pain every 5 mins… eventually i just went home. i would’ve gone to a&e but i’m never taken seriously when it comes to pain as i have learned how to function even with severe pain, as i just don’t have a choice. unfortunately i can imagine i look completely normal to everyone else, even if it feels like someone is setting me on fire on the inside. the past two days have been excruciating… i can still walk and talk (unfortunately), but every movement just makes me want to die. i take naproxen, diazepam, co-codamol and sometimes dihydrocodeine for pain and nothing is taking it away (normal for me, but just is really unhelpful). my mum is currently very ill and in hospital so i don’t want my family to think i’m trying to take attention away from her… just don’t know what to do with myself though. because she’s gone i’m currently taking care of 4 pets and her sick mother as well. i’m so overwhelmed, and upset that the doctor never told me that there was something wrong… would really appreciate any advice/kind words.

thanks

[Emma2017]

Hi there, pain is so so frustrating and you sound far too young to have to deal with that all the time. I know what backpain is. Having had 5 spinal operations. I still suffer from referred pain and back pain. Know what you mean by sometimes just any movement is annoying. I don’t have scoliosis so cannot comment on that. For my other symptoms it’s just a must to keep moving. So I do some gentle Alexander technique exercises and try and walk a lot. Having used a crutch since Feb 2017, I finally managed to walk without about 6 months ago. Without knowing your exact diagnosis it will be difficult for anyone to give any advice. If I were you I would make an appointment with your GP and go over the MRI and see if a referral to a specialist might be an option. If not then A.T and walking is my best advice. I take pregabalin and dihydrocodeine but am in the process of reducing the pregabalin. As with any back suffering pain you tend to look perfectly normal to others. My crutch stopped that but now I am able to walk without it’s difficult for people to grasp the pain I feel. It’s fine though I just ask xyz if needed and people are fine once they realise what is what. Take care and let us know if there is any more news from your GP.

[avavs777 in reply to Emma2017]

thank you so much- i’m sorry to hear about what you’ve been through! i’m trying to still walk around but it doesn’t seem to be helping much. my gp is apparently on holiday now, and can’t help me until he’s back (quite frankly i don’t even think he’ll help me once he’s back anyway… he seems to have given up with me and i am assuming he will just refer me to the ortho who has apparently been looking at my scan). i’ve never heard of alexander exercises- will definitely have a look at those! thanks for the advice- 5 operations is a lot to go through, you’re incredibly strong! hopefully your pain will eventually settle down. always here to chat if you need

[Emma2017 in reply to avavs777]

It’s alexander technique, it teaches you a lot how to walk correctly and to sit correctly. My teacher combines it meridian line exercises. I first was not sure but it does help. Your dr might be fed up but you can ask to be referred to another specialist for a second opinion .

[costabuck]

Rant as much as you want on here, people on here understand issues with long term chronic pain. Even though we may not have the same pain or symptoms its always good to express your feelings and issues otherwise you can internalise everything and that definitely does not help!I started with my chronic pain when i was 25yrs old after an accident in work and then what made everything worse was the surgeon who did 2 illegal procedures on me! I wont bore you with the details but 17 operations later I'm still here.

As you say, people don't think there's anything wrong with you because you're walking, talking, & everything else but we also become very good at holding everything together in front of others! Its our day to day mask i think.

Anyway, always happy to listen & help if we can on here kx

[avavs777 in reply to costabuck]

17 operations!! you’re so strong… i’m sorry you’ve been through all of that. it’s such an awful feeling, knowing you can’t cope but also knowing that no one will listen or be concerned when you tell them that you’re struggling. thank you so much for your kind words, i really hope you can find a solution for your pain. likewise, always here to listen if you need.

[Emma2017 in reply to costabuck]

What operations did you have, to have had so many? What a nightmare.