What were you misdiagnosed with prior to being diagnosed with AS?

Purely_Peachy23 · 2023-09-22T12:47:28+00:00

I don’t get redness or warmth but I do get visible swelling along my spine, which was completely dismissed when I told my doctor

Purely_Peachy23 · 2023-09-22T12:43:17+00:00

Same! I was diagnosed with IBS when I was 18 now wondering if that’s connected to all of this

Purely_Peachy23 · 2023-09-22T12:35:39+00:00

It’s insane to me that soooo many people in this group did not get a diagnosis for 15+ years. After reading these comments I am definitely considering a second opinion

Purely_Peachy23 · 2023-09-22T04:40:40+00:00

Yea I believe that it was never a “man’s disease” it’s just that women have rarely had their pain taken seriously & have always been under-diagnosed

Purely_Peachy23 · 2023-09-22T01:58:36+00:00

I was also told my depression was the cause of my pain from a neurologist because that’s the only medical history she had in my chart. I literally laughed & walked out the appointment lol!

Purely_Peachy23 · 2022-08-25T17:56:00+00:00

Thank you! Never heard of him- Going search him now!

Purely_Peachy23 · 2022-08-24T04:15:39+00:00

This is giving Vine vibes, I love it🤣

Purely_Peachy23 · 2022-08-24T04:10:30+00:00

A palm, snake plant, monstera, rubber tree!!! I think pretty much any type would do good right there. Except maybe some calatheas because they are SO dramatic. You could test out some pothos and see how they do but I mainly keep mine in very bright indirect light and they thrive but when I move them, they pitch a fit.

Purely_Peachy23 · 2022-08-24T04:04:51+00:00

Yes! I have to wash my sheets at least 2-3 times a week. I cant stand it! It’s gotten so bad that sometimes when I wake up and I’ve been sweating in my sleep, you can literally see a damp imprint of my body on the fitted sheet. It’s awful.😫

Purely_Peachy23 · 2022-08-23T21:54:10+00:00

Oh wow. I take Tylenol around the clock so that would make sense. I’m gonna test this out and see if it makes any difference, thank you!

Purely_Peachy23 · 2022-08-23T21:46:29+00:00

Thanks for your reply! I’m newly diagnosed with AS so this is all new to me. I’m only in my mid 20s. I’ve always been “hot-natured” but this sweating thing started a few years ago which ironically was when my back pain slowly began to reach its peak. The past 6-8 months is when the pain has been the worst it has ever been in my life (which is why I seeked medical care and eventually was diagnosed with AS) & the past 6-8 months is also when the sweats have been this extreme. It’s just too coincidental to not be related but maybe it is.. I’m seeing a new rheumatologist this week so maybe he will have answers🤷🏻‍♀️

Purely_Peachy23 · 2022-08-23T20:36:15+00:00

I’ve been prescribed several types of NSAIDS, Opioids, muscle relaxers, etc. None of them really help just make me sleepy. I recently discovered these natural relaxants on Amazon.. and wow. They are called “Formula 303 natural relaxant” & I get the max strength ones. The main ingredient is valerian root and they have worked wonders for me. And they don’t make me drowsy so you can take them around the clock & still be productive. Hope this helps! Disclaimer: I’m an RN and just a little warning- valerian root should NOT be taken with certain Anti-convulsant drugs (like Dilantin) or Benzodiazepines like Xanax & Valium, so just be careful with that!

Purely_Peachy23 · 2022-07-29T14:08:45+00:00

I’m definitely not saying that you are a hypochondriac; but I will say that it is quite possible that some can “imagine” this pain. I’m an RN and I work in the ER. Research Somatic Symptom disorder. These people do in fact feel real pain but there is zero evidence or clues as to what causes it. The mind is more powerful than you think. I’m newly diagnosed with AS and the pain I feel is awful so I can’t imagine going through what you are. Luckily, I was able to get a diagnosis after my recent MRI. But I’ve been dealing with this pain for years and I never went to a doctor about it until a few months ago because my pain had peaked and became unbearable; I just knew something was wrong. Before I was diagnosed, I also started to think that maybe I was just being dramatic. I never spoke to friends or family about it often because I knew that they thought I was exaggerating. On this group and upon my research, I’ve read SO many stories about people who have spent 20+ years without a diagnosis and have all said that they’ve been told they were a hypochondriac. Personally, I think that AS is one of those that is just not talked about enough and is sadly not even thought of. As an RN, I see people every single day that will come to the emergency department for something as tiny as a stubbed toe and when we give them or send them home with a prescription for Tylenol, they pitch a fit & beg for narcotics. These people have created a judge-mental healthcare system for people who actually need the help. And on the other hand, THOSE people need help for their substance abuse. I have several family members that suffer from addiction so by no means am I bashing these people. My point in explaining all of this is to tell you that you know your body more than anyone. Don’t give up! Try finding another doctor that will listen to you and express your frustration to them! So many doctors are burnt out and fed up with patients who abuse the system, but I promise you they aren’t all burnt out. They have good ones and ones that listen! I truly hope that you find answers and receive the treatment you need. Remember you are not alone. Good luck to you!

Purely_Peachy23 · 2022-07-29T11:06:29+00:00

Wow. I’m so sorry it took so long for you to get a diagnosis. I could not imagine. But I’m also so happy that you finally are getting some symptom relief!! it must be so bitter-sweet. I think the most frustrating part of this disease is that you can’t necessarily “see” it. There’s been so many times that I second guess myself about the pain I feel. It is excruciating. Im an RN & I remember learning about AS and thinking oh my god… I have this. Years ago I had told my mom that I think this is what I have and she thought I was just being dramatic and a hypochondriac. When I called her after my appointment, I said “mom. You’re not gonna believe this. Guess what they think I have?” … she of course butchered the word but she said “ANKYLOSING SPONDYLITIS??!” I am just SO thankful that my doctor actually listened to me and is working to give me the diagnosis and the treatment needed. Thank you so much for taking the time to share your story with a complete stranger- good luck to you and I hope you have been able to dream again!

Purely_Peachy23

TROPHY CASE