The Day My Life Changed in 3 Hours

By Nikkifriki-aks

2 min read

On the 3rd of June 2016, I was having my 2 days off. I went to the beach and that same evening we set off for a wine tasting event. I was fine but my feet felt tired. There wasn't anywhere to sit so I just managed. Then the same feeling started to creep up my legs and sit on my waist.

Within 3 hours I went from fine to feeling like I was walking on broken glass, so much so that I ended up having to get a piggy back ride home. This pain didn't leave me...ever. I kept going to the doctor's and they'd just prescribe anti-inflammatory drugs. After so long I couldn't handle the pain and left my workplace mid shift and shuffled crying my eyes out to the doctor's AGAIN.

Still saying that it's just sciatica, I'm prescribed slightly stronger meds and given a sick note. After 8 months and being put on antidepressants, I'm told I have to go to a medical review. Scared of what will happen I go to the doctor's for advice and get a scolded for being off for 8 months for "just a back pain." Crying my eyes out I leave and the next day I'm back in work.

Miracles occur and riddled with pain and anxiety I survive there for another year until I go for my work routine check up and the doctor (presuming for some reason that I have a gluten intolerance err...ok) puts on her notes in my report that I need to see a specialist. My doctor FINALLY after 3 years of telling me that it's in my head or I could have chronic back pain for no reason forever, FINALLY gives me a referral.

In December 2020 during the coronavirus pandemic I am treated as a person with an illness. The specialist fresh out of university tells me that he suspects that I have AS sends me for x-rays, MRIs and a blood test. Finally after 4 and a half years I am told that it's not in my head, I'm not complaining for attention and it's not just a backache. I'm told something that I had suspected for a while.

I have AS and chronic sacroilitis. Now my new journey can begin but it will be a one filled with disappointment and despair. The lack of empathy and lack of communication on their behalf begins anew. Now I'm fighting for them to hear that I have chronic neck pain and that their biologic meds aren't the miracle they believe they are. Wish me luck...I'm going to need it.

Needless to say that I've passed 2 medical reviews and now I'm allowed to continue as a "pensioner" at 44 years old till 2024. Then the battle begins again.

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CommunityMemberea4be4 Member
Your story is similar to mine. My pain started after my son died in 1988. I always had some back pain but took ibuprofen well one thing led to another to the point that I had a hard time getting out of bed. I was so stiff. at that time I had just started a business that I didn’t know much about. I said whole Nother story so I was under the stress of a new business. I was under the stress of moving of a new job and my dad was in the hospital dying so all the doctors just kept saying I was under stress and I said yes I am under stress but I’m having unbearable pain anyway to make a long story short I was not diagnosed till 2007 and my family and my coworkers all thought I was nuts, the doctors thought I was nuts everyone said nothing was wrong with me. I was just under stress and I have As and fibromyalgia, and now I currently have a deteriorated neck where I have to get nerve blocks and epidurals. I get severe headaches jaw pain the lust goes on and on I just wish there would be some really good doctors out there that could help you. I wouldn’t wanna help you my latest doctor said there’s no help for me. I miss my original doctor she retired. @
Auldyn Matthews Moderator & Contributor
I am so sorry that you had to go through that journey. I'm relieved to read that you got your answers and hopefully are on a path toward recovery and thriving rather than surviving. How are you doing these days?
James Hollens Moderator & Contributor
Hi <inline-mention username="Nikkifriki" user-id="4548490"/> , Sorry to hear that what sounded like a lovely evening ended so badly and was followed by a long period of not being taken seriously by doctors. It is so frustrating how long this condition usually takes to diagnose! I'm glad to hear that you have finally got the answers you needed now, even if it probably wasn't what you were hoping for. How have things been since receiving the diagnosis? Have the biologics helped at all or have they been a total failure? I hope that you are able to find some relief for your neck too soon as well and that the communication struggles improve too! Sending love, James (Community Member)