What's Happening To My Body Is Real

1 year ago something changed my life forever.

It started with back pain

I woke up having severe pain in my back. I have a spinal fusion due to scoliosis, so I thought maybe I twisted wrong in my sleep, but the pain felt different than anything I have experienced before.

It continued to get worse. I went to Urgent Care and then eventually the ER. They did a MRI but couldn't see much because of the hardware in my back. They did find multiple gallstones and said I have arthritis and spinal deterioration.

New symptoms emerge

Was sent to an orthopedic surgeon that did my spinal fusion. Fusion is solid, but my pain was increasing and affected my right side. My right leg went numb from the hip down for a week or so. When the feeling started to come back, not only did I have severe intense back pain I had developed intense nerve pain and numbness, upper abdominal pain, nausea, increased brain fog, confusion, and memory issues. After having a zillion tests, no conclusion on what is causing this. I have not been able to have my gallbladder removed due to clotting issues.

One of the blood tests they ran for my clotting issues had Lupus in its name. Had no idea what Lupus was. I started looking at the symptoms of Lupus and what it is and I was seeing a lot of common denominators.

Growing list of symptoms

  • I was diagnosed with Thyroid disease about 17 years ago
  • I had a virus attack my heart and put me in heart failure 5 years ago and my heart goes into some kind of rhythm that causes sudden cardiac death
  • I have Non-Smoking COPD and restrictive lung disease
  • Dec. 2019 blood clot in my heart.
  • Redness on my nose and cheeks
  • Cannot tolerate the heat at all anymore
  • Very sensitive to sunlight
  • Headaches
  • Joint pain and stiffness (mornings are the worst)
  • Brain Fog / Memory Issues / Confusion
  • Nerve pain
  • Blurry Vision
  • Muscle weakness
  • Fatigue
  • Chest pain/hurts to take deep breath at times
  • Circulation problems/Fingers and Toes turn blue or white/lose feeling and strength (I did not know there was an actual name for this - Raynaud's Disease I think is what its called)

Waiting for a diagnosis

After all the doctor appointments and testing, there is no conclusion on what is causing all this. I feel very frustrated and invalidated that my pain and symptoms are real.

They have ruled out stroke, seizures, RA, brain tumors, and feel my clotting issues may be caused by taking Eliquis. But I had other issues before I started taking Eliquis and they have ruled out my other meds for the cause of symptoms.


I don't believe they have done an ANA test as far as I know. Tons of other blood work, yes.

I would have thought something would show up in one of those tests. I'm not sure whether to continue this search for why this is happening to my body.

Coping with stress

I feel like I'm getting nowhere and getting deeper in debt with medical bills. I'm not able to work and disability is fighting me all the way, which adds to my stress level.

I just want some peace of mind and focus on healing. All of this gets overwhelming at times. Luckily I am a glass-half-full type of person with a lot of determination and not a negative nellie.

A positive outlook

I have a lot of positives in my life and a lot of life to live yet. I will not let whatever is going on with my body defeat my happiness in life.

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?

By providing your email address, you are agreeing to our privacy policy.

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

Join the conversation

Please read our rules before commenting.

Community Poll

Do you read through your insurance policies and ask questions?