Mirena, autoimmune disease, & side effects

I started birth control pills in 2007. I believe I was only on them for a couple of months before I started having muscle soreness, especially in my legs. My doctor suggested I switch to another type of birth control without estrogen in case this was a reaction. My OB/GYN recommended Mirena. I was honestly worried about remembering to take the pill while on it so five years of worry-free birth control sounded great.
I wish I'd done more research then. Instead it all started to come together last week when I did a google search to find out if it was going to hurt just as much having it removed as it did having it inserted five years ago. As I read I realized that this was very likely the culprit for all the health issues I've been experiencing over the last five years.
My muscle pain continued off and on, progressing to difficulty lifting my arms above my chest and especially above my head (they feel very tired and almost as if the blood is draining from them). Eventually this began happening in my legs as well, typically in the morning when getting up. Joint pain started and was a huge annoyance and frustration. My Raynaud's started in 2009. It started off as annoying and I guess relatively mild (and limited to my feet). Now it is severe and began involving my hands last year. To the point where today it was mid 50s after being warm all week, so just walking outside several of my fingers blanched completely white and were numb for over 30 minutes. New England winters are hell when even mild temperatures set off numb, often severely painful, fingers and toes. Especially when the sun and heat cause their own set of uncomfortable symptoms.
The worst part of the whole thing has been the numbness and tingling which showed up about a year and a half ago. I literally woke up with a numb hand one day. I thought 'I must have been sleeping on it'. But it didn't feel right, not the usual pins and needles when the feeling came back. I thought it was odd. The next morning I woke up with both hands numb. I thought 'Well... that doesn't make sense'. It pretty rapidly progressed from there. I couldn't make a fist in the morning, I'd drop things, I couldn't open my door to let me dogs out without using my elbows or feet to maneuver the handle. My hands and eventually arms would go numb while I was trying to fall asleep. I had severe joint pain in my wrists and hands. I was terrified I wouldn't be able to do my job, and being in my 20s this was devastating to me. My hands and fingers would go numb or ache while using tools at work. Luckily these symptoms improved over time but never went away. Some days are worse than others.
The past 6 months or so I've had increasing amounts of stiffness, discomfort, and fatigue in the mornings. My tingling and numbness progressed to affect my back, shoulders, legs, arms, neck... virtually everywhere. I had a lot of trouble falling alseep and staying asleep. I would wake up in the morning so uncomfortable. I tried sleeping in different positions and nothing helped.
Mentally these things (among other more minor issues throughout the years) were draining. I was so frustrated and irritable. I had been to several Rheumatologists who found positive ANAs and clear symptoms and blood test results of an autoimmune disease, but no specific diagnosis of which one. I was referred to a hand surgeon who recommended carpal tunnel surgery pending results of what seemed to be an invasive test that I decided not to take (since I didn't plan to have surgery anyway, knowing this was not true carpal tunnel. It came on suddenly and in both hands equally, and she admitted I was young for it).
Lastly, breathing became difficult for me. I get winded going up stairs. I became extremely short of breath on a moderate hike that I'd done before without a problem. I knew this wasn't normal for me. I may be a bit out of shape, but I'm not overweight and I'm generally active during most of the day. I finally went back to my preferred Rheumatologist to discuss trying a medication he had recommended. Luckily, I wasn't ready to make the decision and he wasn't ready to push me into it. Still, I wondered where this would end since it seemed so many things that I enjoyed were being taken from me.

Imagine my surprise when I read about Mirena and realized this could have triggered my autoimmune issues and it could explain why I never seemed to have any sort of 'remission' period. At that point I didn't even want to wait the two days to make an appointment to remove it. I found the strings and pulled it out myself.
It's been 9 days and I don't know if it's coincidence but I've been sleeping better with a huge amount less numbness and tingling. I've also felt better. One of the strangest things I've noticed, though, is that I did NOT want kids while on Mirena. Obviously I didn't want kids to begin with or I wouldn't have enjoyed the idea of 5 year birth control so much. But I mean I did NOT want kids EVER the past several years or more while on Mirena. I hated the idea of children. Within days after removing it, I suddenly found myself thinking "if I have a kid..." and the thought shocked me. I hadn't thought about even considering kids in years. It surprised me that I suddenly thought that. And then I started wondering whether I truly didn't want kids or whether it was some Mirena-induced negative thought process or hormonal imbalance. To be clear, I don't suddenly want kids now that the Mirena is gone. Instead, I now am considering the possibility of having a child in the future, which is something I don't remember doing in at least several years while on Mirena.

So for me, I guess things are looking up now that it's gone. But I find some things so incredibly strange. It hasn't been long but I'm thrilled to have even minor positive changes in my health and attitude. Finally some hope that my body isn't going to just continue to rapidly deteriorate before I make it to 30.
I'm glad I found this forum before I made the mistake of immediately getting another Mirena like I'd originally planned after having this one removed. Honestly, I'd much rather worry more about getting pregnant and have heavy periods, cramps, etc than go through all of the issues I've been dealing with the past five years. I just wanted to share my experience since those who shared theirs have made such a difference in my life. Tweet