Recent diagnosis of osteoarthritis in spine. Coping with first flare upšŸ„²

Jules65
Jules65 Member Posts: 7
edited 28. Nov 2023, 14:06 in Living with arthritis

I have been struggling with general walking and pain when standing still for more than 20 mins since January this year. The discomfort in the mornings and general pain increased over the months and my osteopath said I was too pain sensitive for them to help and told me to request an MRI with GP. Months later I get the results I have arthritis in my spine predominately L4 & L5 from an historic injury. Also bulging posterior discs. Was basically told to consider long term management as it is degenerative and pain relief when required. End of July had my first acute flare. Not been able to go to work due to pain and my mobility being affected. Just prescribed pain meds to get me through. Not actually seen a health practitioner as all appointments have been on the phone. Even then, depending who I talk too, makes me feel Iā€™m wasting their time. Donā€™t know how to address a possible phased return to work (office work, so nothing manual to consider). Feel so low at the moment. Keep being told to find a new normal but donā€™t know where to start.

Comments

  • Ellen
    Ellen Moderator Posts: 1,841

    Hi @Jules65

    Welcome to the online Community.

    I see you have been diagnosed largely by telephone and an MRI with Osteoarthritis of your spine.

    This has obviously come as a huge shock and will take some adjusting to. This information might be of use:

    https://www.versusarthritis.org/news/2021/august/how-to-adapt-when-you-ve-been-diagnosed-with-arthritis/

    There is no rush to find your 'new normal' it takes time for all of us and you should be kind to yourself while you are thinking it all through.

    I'd also suggest you read the thread by another new member who is in a very similar position to you:

    https://community.versusarthritis.org/discussion/55062/finally-diagnosed-spinal-osteoarthritis

    Finally I really would push to see 'someone' a GP to start with or ask for a videocall at home and have someone with you if you can. Not being alone during your consultation can give you more confidence to push for treatment. An extra pair of ears is always good too.

    I'll leave you to meet some of our members to share their experience and tips with you

    Best wishes

    Ellen.

  • AusJen
    AusJen Member Posts: 5

    Hiya, I've just been diagnosed, (read original post). I had L4L5 L5S1 operated on and titanium discs implanted, but after a recent episode I've been told I have OA from L3 all the way to coccyx and on hip bone. I also have it in both knees but it does bother me too much. This time I have bladder weakness, limb weakness, permanent pain and exhaustion. I would say you need to be seen in person to discuss everything you need to. Your mental health with be effected also. I had a telephone consultation, then a GP appt, who then sent me to orthopedics via a&e. I pushed yo have just 1 gp follow my case and hes been great. As for work, give yourself time then discuss with your boss how they can help you.. I have an issue with my work as I'm a kitchen assistant in a school, it's very manual and theres currently no part of the job I can do, dur to lack of strength and mobility. Finally 1 battle at a time. I learnt, dont try to sort everything at once. Xx

  • Jules65
    Jules65 Member Posts: 7

    Thank you AusJen. I have another doc appointment scheduled for Monday. I think I will insist on seeing them in person to talk through things and discuss next steps or options available to me. I have gone into panic mode mentally more so since this flare up and seem to be worrying about everything.

  • crinkly
    crinkly Member Posts: 158

    I'm so sorry you are worried about your situation and hope your coming GP appointment is of some help in lessening your anxiety. It gives me little pleasure to welcome you to the unofficial spinal OA club but I hope you find some support on this forum because worrying drains energy, makes everything appear worse than it is and mental panic has entirely negative effects. šŸ˜°

    Like others have done above I'd also advise taking one small step at a time although all of us want definitive answers to our many questions from the outset. Since we are all different the answers to our questions are often discovered from within us as a result of lived experience.

    I do know how challenging spinal OA is as mine led to early retirement from my job as a PE teacher, I also had to change most of my hobbies as they depended on being physically active so it was quite a shock. šŸ˜²

    Now 75 I have learned to accept what cannot be changed but to live life to the full, taking each day as it comes. It isn't always easy but I am thankful to have retained enough mobility to enjoy family life and to volunteer for a national listening charity. (I still have my 'down days' but they pass and the 'mojo' returns.) šŸ˜

    You are beginning your journey on the spinal OA road and I hope you will find this forum reassuring. Don't hesitate to ask questions that could be answered by those of us who have been on this highway for some time, take all the professional advice that is available to you and take heed of the signals from your own body in deciding if/how to make changes in your lifestyle. šŸ˜š

  • Jules65
    Jules65 Member Posts: 7

    Thank you @crinkly I think this forum will be a real support system for me. I realise now I have to accept there will be changes I need to make along the way and adapt over time. Been trying to juggle pain control, dealing with return to work concerns and getting some family members to understand itā€™s not something I can fix and move on. Accepting that the ā€œsuck it up and push on throughā€ is not a solution.

  • Lcc86
    Lcc86 Member Posts: 31

    Hi Jules, I have some similar issues. I agree with others, you need to see a GP in person. If you can get that appointment, make a list of things you'd like to ask before you go so that you can be prepared - the GP won't mind. They should potentially be offering you some physiotherapy or pain management appointments at least. There is more than just taking painkillers to manage, although that can be an important part of pain management.


    You can also look up "pain management programme" as there are some good virtual resources that you can work through at your own pace that can help you learn what works for you during a flareup. It can be a case of trial and error, we all have to find what works for us and it can take time.


    With work, could you get an appointment with occupational health? It would probably be good for them to be aware of your diagnosis so that they can try to make appropriate adjustments e.g. a more comfortable chair if needed.


    I hope you can get somewhere with receiving more support. Try not to worry as stress can make flareups worse (easier said than done I realise!), this forum is great for resources and support too.

  • Jules65
    Jules65 Member Posts: 7

    Thank you @Lcc86 I have been able to sort a face to face appointment with my GP for Wednesday now. I had to push the fact that I havenā€™t not seen anyone for a physical examination at all but the advice on here really spurred me on. He has mentioned referring me for pain management and possibly back to Orthopaedic specialist as well as issues are not getting any easier. I also have my first physio assessment tomorrow so will hopefully be armed with more information that I can share with work to agree a phased return to work plan in the coming weeks. Fingers crossed that goes

  • Lcc86
    Lcc86 Member Posts: 31
    https://community.versusarthritis.org/discussion/comment/684986#Comment_684986

    Good luck! I hope it all goes well

  • jennistewart442
    jennistewart442 Member Posts: 9

    Hi

    Newly diagnosed OA of the spine and hips. The GP said mild but the pain Iā€™m in suggests otherwise. Diagnosed through X-ray only.

    Reading through this has helped me understand what steps I need to do. I have a physical job and have been muddling through the pain. But I see that my pain isnā€™t going away and needs to be addressed head on. I have to talk to my line manager. Iā€™m scared. Cause I donā€™t know what is going to happen

  • Jules65
    Jules65 Member Posts: 7

    Hi @jennistewart442 i have had a productive few days following the support and advice Iā€™ve had from here. Had my hospital physio assessment Tuesday. Actually saw my GP Wednesday AM who has referred me to pain management clinic and further blood tests to rule out any auto immune issues. He told me pain is subjective and should be treated by what the person is feeling rather than the assumption of how progressed the arthritis appears on a scan. He also recommended a phased return to work. Armed with all this information I was able to have a chat with my manager who has turned out to be very supportive making some relative changes and scheduling a phased return to review at my own speed. All that worrying and anxiety of processing all scenarios settled within a couple of days. I now feel I have a management plan in place which has taken away so much anxiety. Sorry to blurb on. I suppose Iā€™m trying to say, now you have a diagnosis from your doctor ask for a referral for physio and pain management or medication review. In turn this will give you points to raise with your employer in how you are dealing with this personally and hopefully get the support you need at work too. I really hope they prove to be as supportive as mine and ease your worries to help with your management plan. Good luck.

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