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Undiagnosed but in pain

For context I live in the U.K. and while the NHS are brilliant and free, the waiting lists and pressure on them leaves them limited in some ways.
I am also young, healthy and “fit”, I go to the gym everyday, I am very mobile and don’t look like I’m in pain… but I am.
I manage the pain really well, I am active as this is what, for me keeps the stiffness and pain at bay. I avoid sitting and laying down as even 20 minutes like this and I feel my back start it get stiff and then sore.
I am also aware of this condition as my Grans Dad had it and it was a very severe form.

I am 24 and first experienced symptoms aged 20, during lockdown. I had one phone appointment during lockdown that was utterly useless but for the past year I have been going back and forth to physios, blood tests, doctors and scans.

My MRI came up as some bulging discs but not in the right area, my blood tests came back without the gene and no inflammation in the blood but all the doctors have said that none of this is conclusive due to bloods only showing inflammation during a flare up (which like I said I manage well) and the MRIs tend to not show things until it progresses more.
They have gone down every route and all 6 of the physios I have seen have said that this is the biggest likelihood BUT to be diagnosed here you need to see a rheumatologist and they have said they do not want to see me.
They have said they do not think they will be able to help me right now as the medications and treatments they will offer will potentially affect my quality of life. They said as I manage so well they want me to continue to manage until it is unmanageable and then they will intervene.

It has left me at a loss, I do not know how to explain it to people and I feel like because I am undiagnosed I cannot get any help or support or understanding because no one I know has it nor do people truly believe I do as I haven’t had that official sign off from the professionals.
I do not want it to worsen, which in some ways it has when compared to the first onset but if it does not worsen I will remain in limbo but also I do not want medications that will affect my day to day life and I am just feeling confused and alone.

  1. Hello!! I’m also here in the UK. I’ve been told for years by physios and doctors that my pain is mechanical, because MRIs do show degeneration, but my symptoms don’t fit with that. I’ve decided to go private and I have my first appt with a rheumatologist tomorrow which im super excited about but also nervous!!
    Maybe going private is an option if you already have your scans and bloods. Hope you find a way forward and get a diagnosis

    1. thanks for jumping into the conversation! We are grateful to have members such as yourself who share experiences and resources. I hope finds her way. And I certainly hope both of you find better health and wellness. Thoughtfully, Rebecca (team member)

    2. I am sending you all the positive vibes for your appointment. Please give as an update. Hope all goes well.

      Nicky (Team Member)

  2. Hello - Welcome to our site. You are certainly not alone. First, there are some here who use the NHS in the UK and I have only heard nightmare stories of having to wait months and incomplete care, etc. I truly feel for you. I am hoping one of these individuals hops on and helps guide you toward better care and understanding across the pond.

    Your proactive approach to managing your pain through exercise and staying active is admirable. It's common for individuals with ankylosing spondylitis to maintain a seemingly healthy and active lifestyle while still experiencing pain and stiffness. And it sounds like you're facing the challenges of ankylosing spondylitis despite not having an official diagnosis. Its great you have begun the exercise regimen you state is helping. Kudos.

    Although difficult and seemingly impossible, I believe it's essential to pursue a proper diagnosis and work closely with healthcare professionals to develop a comprehensive treatment plan tailored to your needs. While exercise and staying mobile can be beneficial, they may need to be complemented by other treatments or lifestyle modifications to manage ankylosing spondylitis effectively. Don't give up. Get that appointment (hopefully with rheumatology) and continue to pursue the avenue of inflammatory arthritis, seeing that you state it runs in the family.

    I understand how frustrating and disheartening it can be to feel dismissed or overlooked when seeking medical help, especially when you're experiencing symptoms that impact your quality of life. It's concerning to me that you're not receiving the support and attention you need from the physios and rheumatologists.

    Feeling stuck in limbo without a clear diagnosis or treatment plan can be frustrating and anxiety-inducing. It's completely understandable to feel confused and alone when facing uncertainty about your health and treatment options, especially when they impact your daily life.

    It's incredibly difficult to navigate the balance between wanting to prevent the condition from worsening and being hesitant about medications that may affect your quality of life. Hang in there. I wanted to drop off a few links to articles/forums on this site they may help you get through this difficult period while on this journey toward diagnosis.

    We are here to support you - if you have ANY questions or feel exceedingly isolated do not hesitate to reach out to a moderator/team member with questions or thoughts. Also, there is the website that has a tremendous amount of information. Sending strength your way as you tackle the health system and physicians. Thoughtfully, Rebecca (community moderator)

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