spongerobsquarepants Member Posts: 3
edited 16. Jan 2020, 09:48 in Say Hello
Hi everyone.
Hopefully this board will help me out in feeling better about my diagnosis.
I'm 34, always been fit and healthy up until 2018 when I started getting back pain.
Since then it's got worse, I have had to stop working as I can't be on my feet for long, struggle to walk longer than for around 10 minutes at a time and have to drive everywhere as I struggle to walk.
I've had an xray, mri scan and been diagnosed with a number of issues. I have osteoarthritis, as well as 2 trapped nerves/slipped discs in my back, I've also a curvature in my lower spine and ankylosing spondylitis. My hips are also causing me pain, as I was told that they are not aligned with one another.
I have tried numerous painkillers, currently on buprenorphine, had 2 nerve root block injections which haven't helped, physiotherapy.
I just feel robbed, the fact I can barely walk now from regularly playing football, running and going to the gym.
Should I push for an operation? As I feel like other options are exhausted.


  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi spongebob,

    Welcome to the forum, sounds like you feel you’ve come to a dead end, well done for finding the forum, a positive thing to do.

    Here is another positive thing to read. It’s our booklet about ankolysing spondylitis


    It looks like there are other medication options for you, so maybe a phone call to your rheumatologist nurse or a visit to your GP would be helpful.

    In the mean time, if you have specific exercises from a physio you do need to do those regularly, they will help your posture which is very important and keep your mobility at its best.

    Don’t lose your friends, hopefully you will be able to return to work and outside activities once your meds and any other health interventions are sorted.

    Keep posting on here, find some forums where you feel comfy, make some new friends and enjoy yourself. If you are struggling with sleeping, cooking, bathing etc just let us know and we can share ways to make all these things easier which will save your strength for fun activities

    If you want to chat to someone our helplines is here from 8am - 9pm on 0800 520 0520

    Take care

    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I began my first arthritis aged 37 (it turned out to be psoriatic) then osteoarthritis was diagnosed when I was 52. Some of my joints have one kind, some the other and others both.

    Psoriatic arthritis is one of the auto-immune kinds as, I think, is AS so treatment is medication to suppress the immune system. A neighbour of mine has AS, takes similar meds to me and like me will do so until the last breath. OA is the physical deterioration and erosion of the lovely spongy, slidy cartilage and has nothing to do with an over-active immune system (although thinking on that is beginning to change).

    Pain relief should never be overestimated in what it can achieve because for chronic pain it achieves very little, merely dulling the sharper edges of the hurt and even then for not very long. Generally males are more susceptible to pain as they have more receptors than females, they do feel it more keenly which must be tough. Mind you, the perception of pain is also affected by how effective one's neural transmitters are, for some they are very lively whereas others' are more sluggish.

    I am not sure what kind of operation you think is an option, in fact I am not even sure what could be done but that is hardly surprising as I am not a orthopaedic surgeon. More than ten million people in the UK are living with this debilitating, demoralising, exhausting and incurable disease: luckily I know why I have mine, I was born with an over-active immune system so it was always in my hand of cruddy cards dealt by life. The OA, however, came as a shock as I had no idea one could do the double. :roll: I know now.

    I am having a grim time at the moment so will stop. The weather is vile which is upsetting the OA and, despite the meds, I feel that the PsA is flaring after a very busy Christmas and New Year. Shoulda paced myself better, wish I had. DD
  • stickywicket
    stickywicket Member Posts: 26,358
    edited 30. Nov -1, 00:00
    You have lost a lot in a short time, in terms of mobility, and gained a lot of pain in its place. It's not much fun and it takes time and, indeed, effort to come to terms with it all.

    You mention ankylosing spondylitis but don't mention DMARDS. Has your rheumatologist not prescribed them? They are the first essential in any autoimmune form of arthritis.

    I''m not a big believer in painkillers because they don't. I prefer physio which can hurt and take up valuable time but which does strengthen our protecting muscles so that joints are better cushioned and hurt less. If you're not currently seeing a physio I'd go back or just, if you can remember the exercises, persevere with them.

    Surgery? What kind have you been offered? I've had hips and knees replaced very successfully but spinal surgery is a bit trickier. Perhaps a chat with your GP or your orthopaedic surgeón at your next visit. These things are not the same for everyone. The more bits we have wrong the harder the surgeon's job. Ask what he recommends, why, likely outcome etc.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    That's a lot to take on board all at once, I'm not surprised you are finding things tough. I suspect that there have been problems developing due to the AS for some time but reached a tipping point in 2018. Anything which affects the way our body moves can cause effects elsewhere, and that may be the case with your hips which will be affected by the curvature of the spine; that in turn may affect the knees - remember that song about bones? It's right! https://en.wikipedia.org/wiki/Dem_Bones) All that compensating and uneven use of muscles can cause a fair amount of pain.
    You've been given the link to the VA booklet, this NHS site may also be useful https://www.nhs.uk/conditions/ankylosing-spondylitis/
    You might also find it useful to look up scoliosis(curvature of the spine) https://www.sauk.org.uk/ for information about posture etc.
    Pain relief isn't straightforward in these situations and certainly isn't like the 'got a headache take a pill' scenario that is most people's response to pain. Drugs are part of it, but also things like coping strategies, learning what the triggers are and how to pace activity.
    Keep posting, it's better than bottling worries up, and as DD often says "We get it because we've got it!".
  • spongerobsquarepants
    spongerobsquarepants Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you for the replies and advice.
    I have been speaking to my GP regularly and the only thing they offer is painkillers.
    When I have been to the hospital and spoke with the spinal team I have not been given much in the way of information regarding an operation, all I was told was that it would be due to trapped nerves. I did have a passing comment from a nurse suggesting the way I walked looked like I would have to have a hip replacement.
    I just don't have much in terms of knowing what I can do, other than taking these painkillers that don't seem to help a great deal.
    It is so frustrating as I am desperate to work and I am unable to apply for anything other than PIP in relation to benefits at this moment in time. Unless there's something that I'm unaware of?
  • stickywicket
    stickywicket Member Posts: 26,358
    edited 30. Nov -1, 00:00
    If you've not seen a rheumatologist then I don't see how you can have been diagnosed with AS (ankylosing spondylitis). It is an autoimmune form of arthritis and requires Disease Modifying Anti-Rheumatic Drugs (DMARDS). I wonder if you actually have spondylosis which is a form of osteoarthritis affecting the spine. This might help clarify the difference though it's a site I've not used before. https://tinyurl.com/sr7bkqn . If you have AS then you should be on DMARDS. If you have spondylósis then the pharmaceuticals are in the hands of your GP and are, essentially, pan relief and anti-inflammatories.

    I think you could only ask your orthopaedic surgeon about surgery but you do have several things wrong which makes it more difficult. I'd be pusuing physio. It can certainly hurt and is unlikely to fix anything but will strengthen your muscles so that all those wonky joints are better supported.

    I wish I could suggest more but right now I can't think of anything.

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