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Hi There – This is My Story

Wow. I am not sure where to even begin. I’ve been “lurking” on here for some time. Gaining confidence to post & make my story public knowledge. So I’ll just start, and try to make sense of it all.

Living with multiple diagnoses

My official current diagnosis is ankylosis spondylitis, psoriatic arthritis, fibromyalgia, and Hashimoto disease.

Hindsight, I had signs & symptoms going back to junior high at least (I’m almost 48). When I was in high school I got mono, missed school for the required 6 weeks, and never really honestly ever had full strength after that. The major back issues started my freshmen year in high school (around 85-86). I was in sooo much pain trying to walk, sit, etc there was no relief.

X-rays confirmed then that had what they were calling “rigid spine”. I had extra fsfvertebrae, and the bottom two had fused together. During this time they said no more physical activity for me, no PE or athletic classes, or marching bad. Things eventually calmed down back wise, I just always had my physical limitations. However, my family ALWAYS blamed it on my weight. If I felt bad, it was because of my weight. If I had a hard time moving around, it was because of my weight. You get the idea.

Go to college, experiencing new symptoms

It wasn’t until I was in college that other/different symptoms started showing more. Fevers, which my mom to this day still says I’m nuts and that I don’t have a fever. You know how it is though! Even the slightest, slightest fever can make you feel like crap.

I was working as a respiratory therapist and got SUPER sick. My sides were killing me – not my back as much- but sides. The Dr sent me for blood work and kidney scans. My sedimentation rate was off (first clue of autoimmune). I know the Dr was worried. The only time in my whole life I remember a Dr calling to check on me! Not his nurse, not the receptionist, but him! I was super sick for a couple of weeks. It finally passed (again). Life went on. I didn’t follow up with blood work I was supposed to. Bad Pudge!

Currently seeing a specialist I don’t like

This went on a couple more times, same scenario. Same blood results that I never took the next step on. Finally about 8 years ago, my primary sent me to a specialist. At first for a long while, she kept saying I had RA. As time has gone on and more testing and more problems, it has evolved into psoriatic arthritis. I cannot tell you which is worse. Psoriatic arthritis or AS.

They each play they own part. As of the past couple of years, my joints swelling have caused more issues, neck and upper back pain (holy hell pain), extreme fatigue, and the list goes on. My current autoimmune specialist, I seriously cannot stand. Her bedside manner is the worst!!! Last time I was there I voiced a concern about having more and more difficulty breathing. To wit, she basically told me nothing and when it gets worse SHE will let me know. I’m telling her NOW it’s getting worse! I could go on & on about this lady. I won’t. So motto bore to death I’ll stop for now.

My current symptoms and medications

My current symptoms are:

  • Neck pain/mid back/lumbar
  • Limited mobility
  • Muscle, joint, and bone pain
  • Migraines
  • Ocular migraines
  • Worsening vision
  • Tingling/numb mouth
  • Bladder leakage
  • Spastic/muscle /jerking spasms
  • Difficulty walking

My current meds are:

  • Cocentyx 150 mg once month
  • Gabapentin 600 TID
  • NARCO 10/325 q4 during day
  • Belbuca 150mcg every 12 hours
  • Sumatriptan
  • Vitamins

There are others I’m supposed to and don’t for the migraines-it’s too much. These abide are my necessities.

It’s not perfect, but I’m feeling better

I’m sure I’ll have more to say. These days I’m feeling some better with the Belbuca – meaning I’m not spending every non-working moment in bed. Is it perfect? No. But until I find the right doctor I don’t think there is a perfect way.

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

  • Erin King moderator
    2 weeks ago

    @pudge I’m so glad you decided to share your story! I did the SAME THING as you when I was first diagnosed…read a million forums and pages on the internet but was too nervous to share my own story. I’m so thankful for the community I have gained and the people I have met and genuinely connected with, and I can’t wait for you to find the same!

    Finding a doctor you like is so important but can be so hard. Unfortunately, it seems like there just aren’t as many doctors specializing in these types of diseases as there needs to be. I wish you the best of luck in finding a new specialist that you love and that listens to you, and again- welcome!

  • Lawrence "Rick" Phillips moderator
    3 weeks ago

    Hello Pudge,

    It is great that you gained the courage to let us know you. I want to let you know that I, and the entire community are glad you have joined us. I am sorry for the reason, but love that you are here.

    Most of us have similar stories to yours. We have lived with misdiagnosis, struggled for answers and have been relieved to learn what the issue is.

    I hope you will find a better match with your doctor. I have found that having a good patient doctor relationship improves the outcome. I have a few doctors in my time (RA, AS, Type 1 diabetes) and I will offer a my one sure way to find a good doctor.

    I insist that unless they laugh with me on the first appointment I refuse to go back. I am not saying it is the best or a fool proof way to find a great doctor, but it does work for me. I hope your plan (whatever it turns out to be) works for you as well.

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