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My Medical Journey

It’s been a long, trying, and difficult journey. I’m still searching for answers.

Since I was young, I always had a bad immune system. So, I would catch everything, mostly stuff that wouldn’t affect my future. Except for my knee, I blew it out in baseball 7th grade, torn cartilage among other things. Then, I had 2 c-sections, a hysterectomy, gallbladder surgery, and another knee surgery, all before I was 25.

Experiencing problems they can’t seem to treat

I started having problems with my body, a lot of pain, fatigue, and nodules of some type. They are internal and they like to move around, press on organs and nerves, bringing me to my knees. They have always been a big problem they can’t seem to treat. They don’t show under imaging.

In my 30’s, they said it was fibromyalgia, which I think is a catch-all for the drs. Some arthritis and thyroid problems, still no diagnosis on the nodules. My 40’s went to Hell. They started with a fall, cracked 4 cervical vertebra due to degenerate disc partly. I had a 4-level fusion, during surgery my Vagus Nerve was pinched which in turn caused all kinds of problems. Not reversible, they affected my heart, BP, stomach, throat, hormones everything non-movement including the spine.

So, for 5 years I was bedridden, my neck did not heal right, I had to get a pacemaker, and could not walk due to severe hypotension amongst a variety other things because of surgery. I did prevail and I’m now able to take care of myself for the most part.

Tired of hurting

After the cervical fusion, the rest of my spine went to crap, my lower back went totally out, I had to have a 2 level fusion in the lumbar, sciatic area. Full of calcium deposits, arthritis, and stenosis.

Still, mind you, I have the nodules causing my grief. My ribs can not be touched, I’m in horrible back pain all the time. My shoulders, hands, and chest too. My life is not where I want it to be, I’m so tired of hurting.

There are others in my family with the same issues I have. I read up AS and going to try and get tested for it. It sounds just like me and others in my family. I truly believe that there is something that has not been diagnosed to explain my health issues.

It felt good to write all this down. I’m sure it’s too long for most but didn’t know what to leave out.

Love this website, it’s so helpful and liberating.
Elana

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lawrence "Rick" Phillips moderator
    4 weeks ago

    Elana,

    Welcome to our site, it is great to have you. your story could likely have been written by many of us and of course most of us have many variations. AS is an extremely difficult thing to diagnose and finding the correct rheumatologist is a good first step for many of us.

    I hope you do find the answers and please continue to let us know how you are doing.

    rick – moderator

  • Auldyn Matthews-McGee moderator
    4 weeks ago

    Wow, Elena. Thank you so much for taking the time to post your story here. It sounds like so many stories I’ve read here and on Facebook.

    You’ve gone through so much, and it’s so inspiring to see someone like you who’s gone through so much in life keep trying.

    I’m so glad the website has been liberating foryou–that’s a lot of what we’ve wanted.

    How have you been managing the pain? I know many take different routes, and I hope yours brings you relief when you need it most.

    All my best,

    Auldyn [Team Member]

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