Migraine Mystery Turns Out to be Autoimmune Disease

I had occasional - maybe once / month - migraines when I was young. I'm not really sure when they started, but I do remember at 8 yrs old just lying in bed crying because I hurt so much. But I had 2 evil stepmothers that never took me to the doctor about it, and I believe my dad was in on it because they both told me that I just read too much and called me an 'intellectual snob'.

As I grew older, the headaches (migraines) became more frequent, and I had other symptoms too. My lower back hurt all of the time, other joints hurt but they took turns thankfully. I was a little sluggish but not so you'd really notice. I just attributed all of this to exhaustion as I was going to school, working 2 jobs, and going out with friends. I also developed insomnia, which is really bad when you have a migraine and are in pain and just want to sleep.

Even older, I just 'dealt with it'. I developed stomach problems in addition to everything else, and was always deficient in magnesium, potassium, etc. The migraines were steadily coming more often, and I was really at the 'miserable' stage. I had no idea what was coming! I'd be happy to be there now!

I had countless tests - antibodies were always low in addition to the magnesium, potassium, etc. I had colonoscopies, endoscopies, other invasive tests. They could find nothing!

Then I moved, and had to go to several doctors - it is amazing the number of doctors that don't believe a patient! I finally found a doctor that was willing to help - he tried several treatments, some of which offered a little relief.

By this time I was in my 30's and had migraines every day. The pain was a lot worse, and my lower back and neck were most affected. Also, I noticed my hands and feet would go numb or they were slow to respond. I found out later that this is called neuralgia, and if it is on both sides it is peripheral neuralgia, like mine. Most migraine meds helped, at least for a little while. I managed to help build a fabrication company and became VP. Was doing pretty well. I could even shut my office door, turn off the light, and lie down if I felt bad!

I actually wrecked a car I'd had less than a week because of a migraine! I was going home early, and very nauseous because of the migraine. I didn't want to vomit in my car, so I pulled over when I thought I was clear (Obviously I wasn't). I vomited all over the parking lot and not in my new car though!

Shortly after, as I was leaving the office, I had a seizure. Luckily my boss was there, and I was hospitalized. They could find no cause for it but did recommend a neurologist. Turns out I'd been having seizures and not realizing it, because they can cause short-term amnesia.

I ended up being hospitalized approximately 12 times, and they could never figure out the cause. When I got sick, like with the flu, I got REALLY sick. Twice because of the flu and dehydration etc. I had kidney failure.

Finally, a doctor walked in, took one look at me, and said 'You obviously have limited neck movement. What other problems do you have?' He is a rheumatologist, and after 20 years, he was able to diagnose me. I have Systemic Lupus.

Lupus, an autoimmune disease, happens when the immune system attacks its tissues, causing inflammation, swelling, pain, and damage.

There is also a Cutaneous Lupus, which causes the familiar butterfly-shaped rash on the face.

Systemic Lupus can attack any of your systems, including neurological, which is why I have the migraines and the neuralgia, digestive, and of course endocrine (my body no longer produces steroids - I have to take steroids every day, circulatory system (I have to take blood pressure meds twice / day) and the renal system. I have to be very careful and pay close attention to my kidney function. The joints are affected, and the pain is pretty bad.

I was on narcotics for over a year, but elected to quit taking them. The doctor had told me I'd be on pain meds the rest of my life, and I am not looking forward to that. I decided I would stay off painkillers until I just couldn't stand it anymore. Some days I really regret that decision...

I was asked to share my story in the event that it may help someone, and I hope it does. I didn't want to scare anyone but if I do help anyone it is definitely worth it!