Experiments with broken glass

The irony of a disease like mine and a blog is that on your worst days, when you need to vent and write the most on your blog, your hands are too painful to actually do it. Here I am though and I'll give it my best shot.

In my great wise, pseudo scientific mind I decided to stop my immune suppressant infusions. I have been on these medications for over 3 years so I was questioning whether they were really still helping. I have been feeling awful lately, so honestly rather than my scientific mind it was probably more of my petulant child mind saying "if I'm going to feel like shit anyway why am I putting this poison in my body?".
These medications are no joke. They are extremely dangerous and can create unforgiving situations where people die within days. That's not drama, just reality. So, you can see why I wanted to verify their efficacy.
I have had very good experiences with these medications (known as TNF blockers) all along. My first medication felt like a miracle. I was in absolutely terrible shape at that point having been misdiagnosed for 4 years and simply have a 'back injury'. So, the improvement was remarkable. Sadly, that med stopped working, which is fairly common, so I switched. The second medication was inconclusive in it's effects, but the third was awesome yet again, and that's where we landed until 12 wks ago.

Now 3.5 years later I seem to be suffering from "worsening severe fibromyalgia and myofascial pain syndrome". The flare ups have been getting worse and worse over the last 6 months and were genuinely confusing matters in terms of symptoms and treatment.bit all cane to a head about 12 weeks ago when I had been amidst a, seemingly neverending, flare up and having a lot of trouble dealing with it emotionally this time. I have had a positive attitude all along and generally can handle whatever comes, but for some reason this one was really getting to me. So, finally I told my Dr as I cried in her office that I wanted to stop treatments. "If I'm going to feel like shit anyway, I don't want these medications".

Fast forward 12 weeks later and I am in bed in intense pain and unable to walk much more than you the bathroom. It feels like there's

broken glass in each joint between the vertebrae and like someone is grabbing handfuls of muscles and twisting them as hard and far as they can. The ice picks in my SI joints are getting worse and worse again.
I think the immunosuppressants might have been working.....
I spoke with my Dr today and she is ordering my infusions again. I start next week. Thank goodness.

As miserable as I am at this moment I am glad I did this. When the the risks are discussed with me, which they are every time I go in, I will start least be able to tell myself that it's working and worth it. Once again quality of life vs quantity, but at least I know now that I am choosing correctly.