Newly diagnosed Osteoarthritis of the spine

Storm

Hi everyone

I suffered with psoriasis and have had increasing pain on my lower back over the last 2 years. An X-ray showed normal 12 months ago and my GP refused to refer me on. In desperation I paid for an MRI and rheumatology appointment. The results are in and I have severe osteoarthritis in my lower back. This news has knocked me for six. I have been in constant pain for over 24 months and now take Naproxen daily. I’m trying to organise physio privately as my GP declined to refer me as the NHS was swamped with COVID patients.

Feeling overwhelmed under supported and not sure where to go next. Terrified that the progress of the arthritis will end with paralysis, incontinence etc.

Any advice or guidance would be so welcomed

Sharon_K

Hello @Storm

welcome to the community. I can understand that you feel overwhelmed and undersupported as it seems like you have had a difficult time with little support or information. Understanding what you can do to hekp yourself is a really good place to start

https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis-oa-of-the-spine/#osteoarthritis-(oa)-of-the-spine_managing-symptoms

whilst the information about this condition does mention the possability of paralysis or incontinence it also says this is an uncommon complication so try to remeber this too. It is natural to focus on the worst aspect of course, when I feel like this I remind myself that I am not that special so I am not likely, to get the rare complications either. It's useful to find a way to be knowledgable but stay in the present with the situation that is infront of you. A physiotherapist will be most useful to help you to stay as active as possible and it would be worth asking for some flexibility spinal exercises that you could use in the pool or in a hydrotherapy pool. Has your rheumatologist started you on any DMARDS? Were you also diagnised with psoriatic arthritis? It would be worth clarifying this information.

https://www.versusarthritis.org/news/2022/may/all-about-psoriatic-arthritis/

I am sure some of our members will be able to share their experience with you. Let us know how you get on and remeber you are going to be overwhelmed for a while so be gentle with yourself and ask as many questions as you need. That is what the community is here for.

Best Wishes

Sharon

Grace111

Hi Storm

so sorry to hear you have been overwhelmed by your diagnosis, I was terrified when I was told I had arthritis in my spine. I originally had psoriatic arthritis at 18 and it has slowed progressed to all my joints. The treatments back then in the late 70’s were nowhere near as good as now. My spine is now completely fused and I can’t move my neck at all but I don’t have any of the complications that you have mentioned. My life has been great so far, I am married my daughter is grown up and I still get out and about. Other issues have meant I now use an electric wheelchair but in all honesty I wouldn’t change a single thing. I would certainly ask your consultant if your psoriasis is part of your spinal issues. Also I would highly recommend keeping active and doing back exercises set by a physiotherapist. It does take time to adapt so take it easy. I hope you get some support soon and personally I would change my GP to get someone willing to listen and help.

hugs to you

Grace

Storm

Aww thank you Sharon.

The rheumatologist has suggested a further scan in 6 months to check progression. He did not diagnose psoriatic arthritis and no DMARDs were suggested. My Psoraisis is a right mess just now - seems like my immune system is having a crisis.

I am 55 in full time work and have been healthy and coping until recently - I’ve been a tearful mess since the diagnosis

Grace111

Hi Storm

I am not surprised your psoriasis is a mess, it loves a crisis doesn’t it 😂 Great that you have been healthy and coping well until recently I would suggest just taking one step at a time. I know it’s hard but try not to dwell on something that may never happen. Hard I know but arthritis has taught me to live in the present as much as possible. Can you still work? it’s also great news that your consultant is going to get you back in 6 months for another check. Hang in there, you got this 😊

Hugs

Grace

Storm

Aww thank you Sharon.

The rheumatologist has suggested a further scan in 6 months to check progression. He did not diagnose psoriatic arthritis and no DMARDs were suggested. My Psoraisis is a right mess just now - seems like my immune system is having a crisis.

I am 55 in full time work and have been healthy and coping until recently - I’ve been a tearful mess since the diagnosis

Storm

I am so pleased to have found this forum - Grace thank you for you kind and positive advice.

DebbieL

Hi Storm,

I’m also 55 and have Osteoarthritis of my lower spine. When I received my diagnosis I was devastated. I wasn’t offered any treatment just to continue with painkillers.

I complained to my doctors by email and surprisingly got an immediate doctors appointment and a referral to a back specialist. I take nortriptyline and 30/500 co-codamol for pain at night. The back specialist offered me pain management, well-being or physio. I took physio and everything changed. I managed to stop taking painkillers in the day. I do ballet and stretch classes which have really reduced my pain.

I have a 4 inch memory foam topper on my mattress which really helps me to sleep.

I would keep going back to your doctors until they refer you. I sometimes think they try to put you off with painkillers! Complain- don’t give up.

I really thought that my life was just going to be pain and continuing reduction in mobility when I was diagnosed. However I can do so much more than I thought I could. I have needed to make changes. I work part time, I swapped step class for ballet, running for cycling… I have some bad days where I take to my bed but more good days.

I really hope you find a good way forward. A good physio can really make a difference. Also finding the right pain relief is also important.

Take care

Debbie

Storm

Dear Debbie

Thank you so much for all the advice and inspiration. I’m in tears writing this but they are tears of thanks and surprise.

I like the idea of writing to the GP and may well follow your lead.

stay well and strong on your journey and thank you so much 🙏

DebbieL

Dear Storm.

I am so glad that I could help. I really don’t understand how doctors can give the diagnosis of Osteoarthritis with no treatment plan. When I look back to how I was at my worst to how I am now I am amazed at the improvement.

I will always have osteoarthritis but I can do so much more than I ever imagined. I just have to do things differently.

Good luck and stay positive. I’m sure you will find working with a good physio will make all the difference.

Take care

Debbie.