I wanted to share my fibromyalgia diagnosis story because there are things I wish I had known months ago, and maybe knowing my story can help someone else who is on their chronic illness journey.
It’s been almost 10 months since I was diagnosed with endometriosis by laparoscopic surgery and received a Lupron injection to help “get rid of it.”
Almost 10 months since my symptoms and condition became a chronic, daily issue.
Prior to that it was relatively episodic and manageable for me.
The 3-month dose, Lupron injection definitely triggered this months-long episode with the major symptoms being:
- debilitating migraine
- chronic fatigue
- aching body pain
- pain to the point of suicidal ideation
- And so much more
I did not get out of bed for almost 30 days initially.
But because it was supposedly a less than 1% reaction, there was nothing my gynecologist or primary care doctor could do but tell me to “take these pills (more pharmaceuticals) and wait for it to wear off.”
After waiting a few months, I decided there was definitely something that had been triggered and I started to wonder if it could be fibromyalgia because the symptoms seemed to match what I’d been reading about.
I went in for numerous blood tests and check ups, but all anyone could tell me was:
- calcium high
- vitamin d low
- hormone levels “messed up”
- ANA slightly high (autoimmune reaction)
- No common autoimmune tests positive
- Everything looks healthy…
- Nothing we can do but wait….
Then the symptoms changed – worsened,
- mini seizures
- expressive aphasia (couldn’t talk)
- electric tingling down arms and legs
- electric pain in my brain
- Pain, pain, so much pain
So I was finally referred to Endocrinology, Rheumatology and Neurology, and again found myself waiting for appointments and not getting out of bed unless necessary.
The Endocrinologists thought Hashimoto’s, but the numbers were all normal.
Rheumatologist refused to test me for anything and said it was the Lupron was the cause – okay fine, the Lupron caused what, though?
Neurologist sent me for MRI, EMG and EEG and everything came out normal.
I asked for an MRI of my brain, and after much fighting with insurance and a trip to the ER I got one – but it showed my brain is normal.
At this point I was getting the idea everyone thought I was making this up to get out of work.
Through much Google searching I found a company that does a blood test that confirms fibromyalgia with 99% accuracy.
The test was covered by my insurance so I decided to take matters into my own hands.
I ordered the test through fmtest.com and within a couple weeks had a confirmed diagnosis of fibromyalgia.
My test showed a lower positive, which the nurse said was often an indication of something autoimmune such as Hashimoto’s – made sense.
It was about month 8 of my chronic condition that I received the fibromyalgia diagnosis to add to my thyroid and endometriosis.
The next referral, and the only one my doctor could give at this point, was to pain management and physical therapy.
But my new pain doctor was not convinced that fibromyalgia was the end of the line for me.
I told him I felt like something was touching my nerves – I feeling I had gotten familiar with when my spine herniated in college.
He decided to MRI my lower lumbar (something I wanted to do in the first place but not one doctor felt was relative), and found a leak in my spine that was in contact with my nerves.
All of a sudden my pain made sense.
The answer is not going to be physical therapy and just learning to live with fibromyalgia.
I can get a surgery and hopefully resolve this issue, and if I don’t I could lose all sorts of feeling in my body to the point of needing a colostomy bag.
After 10 doctors and almost a year of working to find real answers I have mine.
But how many people out there are thinking they just have fibromyalgia and they have to learn to live with it, while something else is really the problem?
I still have a lot to do to sort out my health, but I’m grateful for what I do have.
Sometimes I just think it would have been nice if the first doctor who saw me have troubles got to the bottom of it early on – I could have been fixed by now and not having to depend on my retirement fund in my thirties, jobless and waiting for surgery so I can function properly.