My Diagnosis Story

What symptoms led up to your diagnosis?

I had a large benign tumor on my ovary. It was nearly 29 cm and they told me I had ovarian cancer.  6 months later I got into a hospital had it removed and found out it was benign.  At the same time we found this we also found nodules on my thyroid.  I was told to leave the nodules be and just keep an eye on them.  Approximately one year later I went very hypothyroid and was very ill.  Finally the right side of my thyroid was removed.  It took another year to get meds right and get in somewhat under control.  After these two things my body has never been the same.  I have symptoms with no real  answer.  I am optimal by doctors lab tests on my thyroid now,  but still show  signs of thyroid problems, about a year after the thyroidectomy I was diagnosed with chronic fatigue syndrome.   I started receiving ssdi for these problems and a host of other ailments as well as mental  illness, bipolar 1, panic/anxiety etc... Not even 2 months after receiving ssdi in 2016 I go to my pcp and start telling her of the symptoms I am exhibiting.  I was unable to sit or stand or walk long periods of time because of fatigue and swelling and pain from cfs, but a new pain set in.  I can remember telling my doctor that day the pain feels like it starts in my back/or spine and spreads all over my body.  After showing the doctor where my pain was coming from she looked and me and said you have fibromyalgia.

What tests did your doctor do, and what was this experience like?

She tested some tender points and asked me to confirm some symptoms, I also saw a rheumatologist, did a lot of blood work to rule out other illness that can mimic it, I have a second pcp where she too confirmed this diagnosis.  I have spent countless hours reading and researching where I too agree this is definitely me with close to all symptoms minus a very few.  I was happy to get a diagnosis for what I was feeling but it  brought with it a lot of stress, the more I found out about this illness the more dread I felt.  

Upon learning about your diagnosis, what happened next?

I have been diagnosed for a year and a half. I am currently going through acceptance/denial/grief cycle.  I have searched high and low looking for a cure and then just looking for relief from the pain. I have found a couple of new additional health problems that actually can irritate my fibro, such as arthritis in neck and back and one of my hips, this is all new and really complicates matters worse.  I have not until recently had to deal with the unbelieving doctors concerning fibro but just got a little taste of that recently.  I feel like at this point nobody truly understands to what extent of pain I am in and I am fearful of being in this much pain for the rest of my life.  I  have heard about the recent fm/a test but am a little reluctant at this early stage to be brave enough to get the blood test for fear of a negative result.  I have seen where many people have had a negative result and they say there is no way in the world.