Tag Archives for Pain Management

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

Bad Sleep Hygiene

To say I’ve been having trouble sleeping is a monumental understatement. I wasn’t a good sleeper before I got ill – I had a sleep study years ago that confirmed I have a sleep disorder – and now sleep taunts me like a schoolyard bully.

A lot of the time I get the worst pain flare ups starting in the early evening. Whenever I end up in the hospital emergency room it’s because of one of these evening gifts. Most nights I convince myself that I can cope with the help of deep breathing; a mantra I whisper to myself at the worst peaks “the pain is not real”; or by numbing my mind with countless hours of internet surfing and TV watching.

I keep telling myself that I have to do something to fix this bad sleep hygiene. My efforts might work for a night or two, but as soon as the pain climbs it all goes out the window. My body wakes me at 2:00 AM, then 3:00 AM, then 4:00 AM, then… – I think you get the picture – until it’s impossible to stay in bed. Then about late-morning I struggle to keep my eyes open and have to submit myself to the pull of sleep, which only lasts for a few hours.

I read today that “it takes, on average, 21 days for a new habit to form”. I know this. I also know that I haven’t given my body a fair chance to adjust to the sleep needs controlled by my pain. To cope better I need more sleep. To keep my body strong I need more sleep. To hold on to my mental health I need more sleep.

Tonight is the first night toward forming a new sleep habit. I have decided on a bedtime and I will be tucked in between my striped sheets by that hour, full of hope that I will sleep through the night.

 

The Chordettes – Mr. Sandman

Pain Clinic #2

Later today I have an appointment at the pain clinic.

The pain specialist I’ll be meeting with is the one who completed my intake last summer. I like her because she is not only thorough she is also very sympathetic. She is an anesthesiologist who specializes in pain management. What that means is that she has extensive knowledge of medications in addition to how the body responds to pain.

Before I met her the doctors treating me questioned the probability that my congenital condition was causing me the level of pain I reported. When she examined me my responses to cold, heat and and external pain stimuli were not within normal ranges – I am hypersensitive to all three. She also confirmed that my range of motion is substantially affected by my pain.

When the pain specialist delivered her report, my family doctor/general practitioner finally stopped pushing me to take antidepressants – she believed my pain was psychological. Because of that belief she had a theory that a certain brand of antidepressant would effectively treat my pain – it didn’t even make a dent. Upon receipt of the pain clinic’s report, she finally conceded that my pain is very real and started prescribing the level of pain medications I need to cope with the pain. She also stopped making me take the pain-filled trek into her office every few weeks so she could ‘assess’ me, which was a welcome outcome because traveling to see her caused me a lot of extra pain.

My reluctant surgeon’s attitude shifted too. When I first met her last summer she was almost dismissive of me and my concerns. She actually told me in that first appointment that she had not reviewed my images ahead of meeting me and needed to schedule time with her radiologist to do so before she could complete my diagnosis. That did not fill me with a lot of confidence. However, after she received the pain clinic’s report she started investigating options for dealing with my congenital condition that might not cause me incremental long-term pain or have a long list of poor outcomes.

Without the pain clinic I imagine that I would still be foundering to find doctors willing to listen to me and develop the right treatment plan(s) or give the proper level of support for me to cope with my pain. It makes me hope that others who are living with chronic pain resulting from any condition/illness are equally as fortunate to get the level of care they need from their healthcare providers.

 

Three Days Grace – Pain