So confused.

cazmarelda
cazmarelda Member Posts: 6
edited 6. Nov 2021, 12:17 in Chat to our Helpline Team

I was diagnosed with cervical spondylosis and chondromalacia patella. I was 39 and had a good career, due to a combination of severe pain in my knees and depression/anxiety I resigned from my career believing within a year I would re- apply for another post - that never happened.

The pain was too much and it never let up. I did all the pain clinics and numerous procedures and many med changes nothing helped and gradually other joint became affected with OA, for despite the fancy titles at the start, it was OA.

I have it in all joints now and some birth defect that affects my hips which are also arthritic. I live in pain and from flare to flare. On the list for TKR's and hip replacements. I had my TKR cancelled October 2020, due to aortic stenosis. which was on my medical records and which I wrongly had assumed had been seen and noted.

I have DDD in my lumbar spine and that is the worst pain of all. I had to fight to get the MRI and I have had to fight for every right to be tested for why I live in extreme pain. it is so hard to fight those who are 'specialists' in the whys and wherefores of a specific condition but who have never lived with the condition or any chronic pain condition.

I am now trying to get my head around the terminology that is used by different consultants, more so the spondylosis or stenosis of the lumbar spine./cervical spine. I have listened and understood little, for it is saying 'often there is no pain' and yet I am often in extreme pain. The diagrams used or confusing and the truth is I saved the videos but closed them, for now.

I do not want to be in this pain, too have such limited mobility, to spend more time indoors due to pain of walking in back, legs, feet and everywhere. Pain is subjective and there is no way to measure pain and so is this why most consultants are dismissive of pain?

Someday's I do not want to even move, for even my thumbs hurt and yet Tramadol is not working and I am going to no more pain clinics to have procedure after procedure, that causes more pain in travel there and back then any pain relief then I have ever gained or even been aware of.

With other conditions that I have, it is really impacted on me mentally and although not depressed I live with a low mood. I can do less and less over time and so watching a video that says or I believe it is saying that if I have stenosis I may end up paralysed and having no known tests on my neck since I was first diagnosed, how do I know I am receiving the best treatment?

Thank you

Comments

  • Anna
    Anna Moderator Posts: 925
    edited 7. Nov 2021, 15:50

    Hello @cazmarelda,

    It’s not surprising that you sometimes feel low when you are challenged by pain, and the pain of osteoarthritis is often not understood by medical practitioners. It can sometimes help to talk someone who has an understanding of your diagnosis and is there to support you. The Versus Arthritis helpline is available from 10-6, Monday to Friday so why don’t you give them a ring on Monday? They offer a friendly ear and, although not medically trained, they will certainly understand what you’re going through and give you support.

    Since you are also concerned about whether you are receiving the right treatment, it’s always worth going back to your GP and telling them of your concerns. Sometimes writing a list of everything you want to say helps you remember when you’re talking to the GP as it’s so easy to forget sometimes.

    Many of our members also understand what it’s like to live with pain as you do and I’m sure someone will drop in to give you a supportive word.

    Best wishes, and do keep posting to let us know how you’re getting on.

    Anna ( Mod)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • Hi @cazmarelda

    Thanks for your message. I'm sorry to hear that you are living with so much osteoarthritis and pain. Many of the terms you've mentioned are part of how the body deals with the arthritis related changes in joints - such as growing bone, spinal stenosis, which can fill the cavity where nerves pass down the spine - for example. At Versus Arthritis we try to encourage avoiding complicated language as well as some terms which are negative - such as 'degeneration'.

    Instead we try to share research and information which shows that daily self-management techniques - keeping moving through each day, and doing the regular physiotherapy stretches and strengthening as well as healthy eating to lose overweight, can help to manage osteoarthritis (OA).

    I'm so sorry that your heart condition and Covid pressures on the NHS are affecting your access to treatment and surgeries.

    I wonder if you'd like to ring us here at the Helpline on our freephone 0800 5200 520 so we might hear what's going on for you, and offer support and information.

    We can take time to talk and listen while you can learn about what arthritis is, and gradually let that sit with you, and talk about ways to manage better.

    Osteoarthritis (OA) of the spine | Back pain | Versus Arthritis

    Emotional wellbeing | Support, self-help | Versus Arthritis

    If you are interested in some of the ideas to do with emotional wellbeing, we can talk about options with you. It's particularly worth mentioning this to your GP as they can help get you support.

    I hope we can help further.

    best wishes

    Guy - Helpline Team