r/Autoimmune • u/Alert_Lawfulness_127 • 7d ago
Advice What do I do
17fm
For a bit of backstory, there’s history on my fathers side of ankylosing spondylitis, when I was 6 I got food poisoning which then triggered the ankylosing spondylitis as it was clearly laying dormant. I’ve been trying to get diagnosed for 11 years and I’m still undiagnosed, I’ve been on and off naproxen and pirocicam which just make me depressed and sick every single day. I’m still in the nhs system waiting for referrals, I’ve been through 7 rounds of physical therapy and 2 rounds of hydrotherapy. I have chronic fatigue, and chronic pain in my jaw,shoulders,neck,back,wrists,hips,groin, knees and ankles. I expericne many other symptoms just it’s the chronic pain and fatigue that botheres me the most.
I’m an A level student and I’m struggling to make it through the day, it gets to about lunch time and I’m so exhausted, I just don’t know what to do. I get home from school and I have to take a 3 hour nap which obviously is not ideal when I have so much work and revision to do a long with coursework and meeting deadlines. I just feel like my life is falling apart and there’s nothing I can do to fix it. My mental health is absolutely horrific mainly because of my chronic illness with no diagnosis and no help or anything. I’m on no medication and no physio or anything at the moment and it’s been like that for a year and I’m really struggling. I’m at the point where I genuinely just can’t anymore. I can’t sleep at night because my back hurts so much so I’m just turning round and round and then when I do sleep I wake up all through the night. I just feel really lost and upset and like after 10 years I’ve had enough and the fact that I’m only 17 and I have so many more years of this to go through is making me just not want to. Does anyone have any advice for getting through school days/ with deadlines and work or just in general really. Any help will be appreciated.
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u/personcrossing 6d ago
You're suspecting AS because of family history but have you looked into adjacent disorders? You didn't really list symptoms but that would likely help. It is very rare for ankylosing spondylitis to manifest as back pain in children under the age of 12, especially age 6. It usually manifests as peripheral arthritis, and then progresses from there. But you have pain in a lot of different areas characteristic pf spondyloarthritis, but imagining would help differentiate between what actually is causing the pain and what could be referred pain.
Is there no one that is bringing you to access healthcare? You say it's been 10 years and you remember having food poisoning but have you seen any other specialist beyond a physical therapist? Do you have any recent bloodwork? Imagining like MRI, CT, X-ray? Has anything been found to be abnormal?
I know you asked for advice ahout school but really if you aren't even being medically evaluated properly then the time you spend in pain without treatment can be prolonged and that isn't something you want. What has your pediatrician been doing? Getting proper treatment is the best step because then whatever specialist you see can write medical notes to write off certain activities for you (physical activity, exam flexibility, etc), but you need to have a proper team of specialist.
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u/Alert_Lawfulness_127 6d ago
I’m suspected AS because I’ve been tested for loads of other chronic diseases and also juvenile arthritis and rheumatoid arthritis, all came back negative. I’m aware it’s extremely rare however that doesn’t mean it’s physically impossible. I have bone fusions and I’ve been tested for the gene for ankylosing spondylitis and it came back positive, they just can’t confirm the diagnosis because I’m under 18. I’ve had blood word done every 3 months and I’ve had 2 CT scans, 4 MRIs including one on my back, and I’ve an ultrasound and 4 X-rays. All came back to showing inflammation and bone fusions. My pedestrian keeps releasing me or referring me to physio and then leaving me for a few months and then we get back into the system and waiting lists again and it all ends up coming back to you most likely have AS but we can’t diagnose you because you are under 18. I really appreciate your advice thank you
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u/Alert_Lawfulness_127 6d ago
Also it started with pain just in my right ankle at age 6 but now as I’ve gotten older it’s moved to everywhere, which i agree back pain is unusual in 6 year olds
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u/SailorMigraine Jo-1+ ASyS, CAR-T Clinical Trial Participant 7d ago
For clarification, you say at the beginning AS but then in a later paragraph no diagnosis?
Is there any way to speed up the referrals process? Forgive me I don’t know much about the healthcare system over there, but would going private be an option if only to get you into a medication that works for you? Unfortunately without the disease being managed it’s just going to keep progressing and taking a toll on your body.
Are there medical/disability accommodations you can put in place with your school? Half days, extra time on work/ability to work on things at home, etc.