I almost passed out this morning. My body couldn’t figure out how to absorb the pain that was being forced through me. To compensate, my brain was on the verge of shutting me down to protect me from feeling anymore.
The pain was a convergence of two separate pelvic pains. The first is the undiagnosed pelvic pain I’ve been living with for over 18 months. This pain is with me every minute of every day with varying degrees of intensity. It is accompanied by referred pain in my legs and back. The second pain, is a recurring one and has been with me for a few days because of the not-so-joyful miracle that is womanhood. My periods have been unbearable since the arrival of my first one when I was almost fourteen. I dread them. When they show up the cramps simultaneously apply a vise-like squeeze and stab my lower abdomen; and the lower backaches and leg pain make standing straight difficult. What a wonderful time to be a woman (imagine that swimming in sarcasm).
Each of these pains is like a super villain jockeying for the role of superior ruler of the realm formerly known as my body, which is no longer controlled by my will. This morning I was captured and held hostage while the two battled each other for supremacy. For a few hours my period was on top. I definitely felt her dominance when I was reduced to a sobbing, crumpled ball on my bathroom floor begging for mercy.
For now the two seem to have reached a truce. They have divided the territory within the borders of my pelvis to build their individual camps. They have settled in for the foreseeable future. When they will pull up stakes and leave permanently is an unknown.
I got through this morning’s battle because I didn’t know what to do except stop resisting the pain. The tenser I became the more intense the pain became. While I was on the bathroom floor I positioned my body in child’s pose. It is the one yoga pose I can move my body into without adding to my pain. It helps to calm my body just enough so I can cope. This morning it helped me to surrender.
I’ve been weepy all day. I’m on a high pain rollercoaster that won’t let me off. So instead of screaming, I cry. The peaks of this ride keep reaching higher into the stratosphere when all I want is someone to make it stop so I can step off into the slow crawl of life.
But crying helped today. Sometimes being able to loosen the valves helps to relieve some of the pressure. I especially needed it today when I woke up in so much pain I knew immediately I wouldn’t be able to go to the holiday dinner I was invited to attend this evening. The call to express my regrets was a hard one, but my effort to fight back my tears was met with sympathy and understanding.
This isn’t the first time I’ve had a weepy day. I seem to move through cycles now. My pain and emotions merge and climb beyond previous limits where my body and mind completely collapse. Then I must pick myself up again and move forward.
I’m crying now as I type. The pain won’t be gone when I’m done but emotionally I will feel just a bit better.
The medical mystery that I am continues to perplex the doctors trying their best to treat me. My body keeps presenting one strange or rare symptom after another. During last Friday’s visit to the pain clinic I had not one, but two highly intelligent, well-trained doctors baffled by the sudden reversal of an “unlikely but serious side effect” they both believe might be caused by one of my pain medications. Before I get to this puzzling occurrence let me give you some background.
The doses of a second medication (Gabapentin) were adjusted. I have taken Gabapentin multiple times a day for some time as a part of my pain management regimen. My doctors believe the referred pain in my legs and back is caused by my nervous system’s overactive response to the source of my chronic pain. Therefore, my nervous system needs to be calmed. The pain specialist increased my nighttime dose of Gabapentin from 900mg to 1200mg with an option to take an extra 300mg if I needed it in the middle of the night.
About a week after making the changes, I noticed something strange happening to my body – HA, imagine that, something stranger than what I am already living with. My feet, ankles and calves were swelling. The swelling is so bad at times it’s hard to find a pair of boots or shoes to fit my feet. I contacted the pain specialist to report these symptoms and she decided that the Gabapentin might be the culprit, so she dialed my nighttime dose back down to 900mg with the option to take an extra 300mg if I needed it in the middle of the night. She decided to dial back the Gabapentin mainly because I had “reached the outer limits of the maximum dose for a day”, which is based on quantities given to men who are twice my size. Think about that for a second… Even with this reduction, the swelling has continued, in varying degrees, since February.
Now that I’ve filled in the background, here’s what happened last Friday. When I woke up on Friday morning my feet, ankles and calves were swollen. At the appointment the pain specialist asked me to take off my socks and roll up the legs of my jeans. The swelling was visible. To see how far up my legs the swelling went she asked me to take off my jeans and get up on the examination table. To rule out the possibility that I might be getting clots in my legs she massaged the length of my calves and rubbed my ankles and feet. As an added precaution she is sending me for an ultrasound of my legs.
As she examined me, she combed through her encyclopedic memory to find a link between my medications and this odd symptom. She feared that I might be experiencing what is listed as an “unlikely but serious side effect” of Gabapentin: swelling of the hands/ankles/feet. She wanted a second opinion on what she was seeing so she decided to ask the head of the pain clinic to come in to do a second examination. She asked me to stay undressed and lying on the table.
Unlikely But Serious Side Effect
About 15 minutes later both doctors came back to the examination room. To their amazement the swelling was almost gone. Luckily I had taken a picture of the swelling the day before so the head of the pain clinic had something for comparison. They concluded that I have fluid retention in my legs and that elevating my legs worked to reduce it, but the Gabapentin may or may not be the root cause. They also suspect that I might be experiencing issues with lymphatic drainage that could have been caused by a procedure I had in February as well, which literally penetrated the source of my chronic pain with a needle. Their shared perspective is that the agitation of the mass could have triggered this reaction, but even that is questionable because the majority of the swelling is on the opposite side of my body from the mass. To be on the safe side the doctors decided to dial back the Gabapentin even further and want to see how low they can reduce the doses and still manage my pain effectively.
Nothing about my illness has been ‘normal’ or ‘textbook’. I was misdiagnosed to begin with and now only have a working diagnosis. Some of the medications I’ve been prescribed have not performed the way they are supposed to. And on top of it all, I keep getting more odd symptoms that can’t be directly accounted for or don’t fit with what my doctors think is causing my illness.
With all of this I have one question: what do you do when your body keeps throwing up one hurdle after another in the path toward recovering your health?
My Small Surrenders 