Re: Mirena, autoimmune disease, & side effects

I'm sorry for what you're dealing with! Your story sounds much like mine. Very similar symptoms. I also dealt with Raynaud-type issues, as well as erythromelalgia. It severely affected my lifestyle for a 1 1/2 years after removal, and now has gone away. I would spend hours every day with my feet elevated, with a fan blowing on them, to ease the heat flare-ups. Then it would push my feet back into chill mode, and they would turn pale again. My hands were also bothered, but my feet were the worst. My Dr. attributed it to autoimmune illness because I had ANA's, but nothing specific enough to give me a diagnosis. Now, at almost 3 years post, the ANA's have gone, and many of my neuro issues are better. I no longer have tingling, twitching, numbness, or muscle weakness. Fatigue is much better. I remember so clearly trying to wash my hair in the shower and having to take breaks every 15 seconds to rest because my arms couldn't take it.

Hang in there! You'll get better! Don't be surprised if you have periods of improvement followed by a return of symptoms (or even a new symptom, or a worsening of them). You might have an entire month of feeling awful, and then a better month. Try not to stress and worry. It can be a see-saw effect, which is scary because having the IUD out makes you feel you should be better.

Keep posting - we're here for you!

Love,
Diana Tweet