Pain Clinic #9: Acupuncture Agony

I survived my first acupuncture treatment. I know that sounds dramatic, but I did have to sign a consent form and waive my right to sue the hospital and all staff if I had any negative reactions before my pain specialist started the treatment. Besides, once I outline what happened, that I characterize the outcome as survival might not sound far-fetched. After I signed the consent form, my pain specialist and the assisting nurse outlined all the possible known negative reactions I could experience during and after the treatment. The intention was to place ten acupuncture needles in my lower back close to my tailbone radiating outward to my hips, and more needles in other areas of my body. Because I can no longer lie comfortably on my stomach, we had to figure out the best position for me to lie down on the table to prevent me from moving during the treatment. The best position turned out to be lying on my left side with my right leg bent at the knee and supported by a pillow. I had another pillow placed under my head and both arms stretched in front of me – reading that back it sounds more complicated than it was. In anticipation of the bright lights of the treatment room, I brought a sleep mask with me that I put on to create a more relaxing mood.

With me lying steadily in place on the table, my pain specialist moved my clothes aside to get access to the bare skin of my lower back. She spoke to me as she started to insert the needles asking if they were causing too much pain as she placed them. Unfortunately, even though she didn’t insert them too deeply, the pain of each needle she put under the skin close to my tailbone was unbearable. After she inserted the fifth needle in the flesh close to my right hip, she decided not to put anymore into my back. I’m glad she stopped because I’m not sure I could have handled the pain of five more needles. My pain specialist placed the sixth and seventh needles on the backs of each of my hands in the soft pad between my thumbs and index fingers. The nurse set a timer for ten minutes, and then it was lights out.

During the first ten minutes, as I was lying on the table in the semi-darkness, I could feel an intense, tingling sensation radiating from each needle in my back and hands. It was uncomfortable and not at all like past soothing acupuncture treatments. When the timer went off the nurse came back to the treatment room to adjust, or as she said “twizzle” each needle. She set the timer for another ten minutes and left me alone in the dimmed room once more. The discomfort from the needles continued to grow. The familiar feeling I get at the beginning of a pain flare up started building in my legs, but there was still time left on the timer. While I waited for the time to run out, I hoped that the removal of the needles would ease the discomfort.

At the end of the twenty-minute treatment, my pain specialist returned to remove the needles. She delicately plucked each fine, silver sliver of metal from under my skin, and the nurse used cotton pads to dab blood away from some of the insertion points. My pain specialist told me to sit up slowly. As I sat up, a wave of nausea hit my stomach. I wanted to vomit. I sat still for a moment then tried to stand up. I felt dizzy. I had to sit back on the table. The nurse and my pain specialist were very concerned and made me lie back down for about 30 minutes. When I finally felt steady enough to stand up, the nurse said she could tell that I felt better because the colour had returned to my face. However, there was still concern that I might need more medical attention. She told me that if the nausea and dizziness continued or worsened that I should go to the emergency room.

As the day progressed, the nausea and dizziness started to fade slowly, but the pain flare up that followed was as unbelievable as it was unexpected. For the first week following that treatment, I had soreness in the areas where my doctor placed the needles; tingling in my hands and the soles of my feet; that tingling turned into fiery pain from the soles of both my feet all the way up to my pelvis and lower back, and I felt exhausted. I couldn’t sit comfortably and standing or moving around made the pain worse. I tried massaging the arches of my feet, my ankles and thighs but the added friction made the burning pain worse. Even my hands tingled, although I only had a single needle placed in each one. By the time I went back to the pain clinic for the second treatment a week later, I was so sore and stiff that my pain specialist decided against more acupuncture and had to increase the doses of my pain medications to help me cope with the pain. She also expressed surprise that I returned for another treatment and told me she hadn’t expected me to make it to the appointment because of the shape I was in after the first session, and how much pain I was still in while meeting with her. Even though I was still in so much pain, it never occurred to me to cancel the treatment.

It’s been a month since I had that acupuncture treatment and my pain is just getting back to a level where I can cope, even with the higher doses of pain medications. Because I had positive experiences with acupuncture in the past, this outcome came as a real shock to me. I knew that it was possible to feel some nausea and dizziness afterwards, but I wasn’t prepared for the intensity of what I experienced. Since going through this I found AcuTake, an online publication that provides information about acupuncture. According to an article on the site, “7 Acupuncture Side Effects That Are Normal”, one of the potential side effects is “worse symptoms” or what “is sometimes referred to as a healing crisis” because acupuncture “awakens your self-healing capabilities” and “can cause not only an exacerbation of current symptoms but also the recurrence of previous ailments that had been dormant.” The article further states, “The good news about this side effect is that it’s a sign that things are moving. In the case of acupuncture, this means that the primary objective is being met. That is, you are starting to transition on multiple levels from stuck to unstuck.”

I don’t know how true it is that I have to feel worse before I get better, but I have a follow-up appointment scheduled with my pain specialist in about two weeks and we’ll definitely have a conversation about whether the agony that comes with acupuncture will benefit me in the long run.

 

Stevie Wonder – Ordinary Pain

Pain Clinic #3

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.

Around the middle of February my pain medications were adjusted to help me cope better with nighttime pain and reduce the spikes in blood pressure that occur when my pain increases. The first change was a new medication (Clonidine) that was introduced to regulate my high blood pressure – just in case you didn’t know “chronic pain causes high blood pressure” and “chronic pain somehow fundamentally alters the relationship between the cardiovascular and pain regulatory systems”. Clonidine also helps me to get to sleep, which is something that I desperately need.

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

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?

 

Bon Jovi – Bad Medicine