NOTE: I suck at blogging. I have not been going in any sort of chronological order. I have also not been explaining things very well. Yesterday I wrote about an ‘a ha’ moment I had when my ob/gyn spoke about chronic pain as a fire alarm going off where there is no fire. I liked the metaphor. What I didn’t say was that I have both chronic pain and the other kind: actual inflammation. They are very, very hard to tease apart. In fact, I really cannot tell the difference. So, let me explain:
As I understand it,I have fibromyalgia syndrome and a connective tissue overlap disease in addition to my primary immune disorder. All of this means my neurons are morons and do not fire correctly. There is also something going on with my cytokines. I don’t really understand that yet, but I am learning.
When the connective tissue disease or MCTD (Mixed Connective Tissue Disease) was diagnosed at Mayo in 2011, I was put on a medicine called Plaquenil. This med helps dampen the immune system so it quits attacking itself and making my tissues swell on the inside. Once that took effect, a lot of my pain subsided.
In addition, when I do my igg infusions, my pain decreases. So, I know my pain is partially due to disease.
However, a lot of joint pain and just everyday pain remained and I was told it would be with me for life.
Thus begin a journey down the chronic pain rabbit hole. I was told to find a ‘pain doctor.’ Well, I wish I had been given some sort of guidelines. I have written a couple of essays about these experiences but let me summarize:
First guy: sent me home with multiple narcotics and suggested I take them all at once and go on about my day. I nearly died in a car accident.
Second guy: Seemed brilliant and gave me stuff that worked but I never saw him after first two visits. I was shunted to his P.A. or even a Medical Assistant. The wait times in his office were one to two hours past an appointment. They kept increasing the medications then yelling at me for being an addict. It was very confusing and created a sense of shame and loathing that felt awful. I didn’t know what to do.
I went to Mayo again in spring of ’12 and the doctors there told me a good pain clinic works at pain relief from several angles and never just hands out pills. So, I fired the guy I had been seeing and found someone who has a more balanced approach.
At this point, I am off of over half of the narcotics and am once again turning to acupuncture as well as trying to help myself through diet and very moderate exercise in the pool.
However, the nature of the beast is that if I push too hard, it comes back and bites me in the butt. Sunday I felt good and the water felt wonderful. I got excited. It felt like my old body was back. I jogged in the water for twenty five minutes or so.
That was a big mistake. It caused my body to react against itself and swell on the inside.
No one seems to understand how this works exactly but somehow we trigger a response that brings on the pain and the fatigue when we ‘over do.’ The disgusting thing is, you never know when you have over done it!
I find this hard to live with.
So, in a nutshell, that is me and chronic pain. We are not friends.