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

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12 thoughts on “Pain Clinic #3

  1. Medications are tricky, especially recognizing the side effects. Many times I was told that opioids cause constipation. Doctors would automatically write a prescription for this side effect whenever prescribing opioids for me, but I never really had that problem. Many people get sleepy when taking antihistamines, but not me. Some people get nausea and stomach problems while taking a lot of aspirin, but not me, at least not yet.

    Fluid retention can be caused by so many different things… Anti-depressants can cause weight gain and, I would think, also fluid retention. Of course, so can the birth control pill or other hormones.

    And I wonder why your doctors didn’t consider a diuretic? Or could it be an allergy? If it might be the Gabapentin, why not switch to another similar medication? Have you ever taken Neurontin?

    Just throwing out ideas, maybe you’ve already thought of all these…

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    • Thanks for all this insight.

      I tend to get the rarest side effects when taking a targeted medication. A number of years ago I had to take a medication that had vertigo as a rare side effect and of course I got it 🙂 They had to take me down to the lowest possible dose because it was a medication that I needed to take.

      Gabapentin is the generic name for Neurontin. Right now if something works they try not to mess with it too much. The strange thing about all of this is that I have no weight gain just the swelling in the legs and feet. I’m not taking any other meds that might cause this symptom so they are fairly sure that reducing the dose will help. The swelling has been better over the last few days with the reduced dose and sleeping with my legs more elevated.

      It’s almost comforting to know I’m not the only one with medication problems… 😉

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      • It’s been awhile since I tried the hodgepodge of pharmaceuticals that doctors prescribed for me over the years, including Neurontin. Unfortunately, these kinds of drugs never helped me at all. I’m just wondering, does the Gabapentin still work as good as when it initially worked for you?

        And I’m so glad to hear that the swelling is better. It’s scary when your body has a reaction like that and you don’t know why.

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        • Thanks.
          My hodgepodge of pills has been tweaked multiple times since the start of all this 18 months ago. The Gabapentin on its own isn’t doing what it used to because the dose has been increased along with everything else. The longer they take to figure out my diagnosis the worse my pain gets.

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          • I sure wish I could help, maybe give you the diagnosis you’ve been seeking. It’s hard for me to remember when my pain was only 18 months old, but it only took a year for me to get the diagnosis. Many pain patients have to wait a lot longer.

            Not that getting the diagnosis helped that much in the long run, since my condition can’t be cured, even though I tried really hard (and for a long time) to make things better — even surgery. Years ago, I recall throwing away about 10 boxes full of research that I had accumulated… In the end, it was all about learning to manage the pain, not fix the problem.

            Taking Gabapentin for such a short time shouldn’t lead to its ineffectiveness. Have you thought about getting a DNA test? With some markers, it can show if you have difficulty metabolizing certain medications.

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            • Thank you again. All the support I get here means so much to me.
              I know it hasn’t been long since my illness started compared to some people but I miss my old life 🙂
              I’m sorry getting a diagnosis didn’t help you. I’ve been told to prepare myself that that may end up being the case for me.
              My pain has been getting incrementally worse and they’ve had to increase my meds to compensate. I’ve been locked in in at a pretty high level cocktail for some time now of which Gabapentin is just one of the meds.
              I’ll keep DNA testing in mind. There isn’t anything that I’m not open to at this point.
              I hope you’re having a good weekend 🙂

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  2. Gabapentin was one of the many many drugs I was taking when I was on non-marijuana pain meds. I had so many side effects, I no longer knew what the root cause of my pain because I was just plain screwed up all the time. I finally went cold turkey (against doctor’s order, and it was pure hell to do, but I was sick and tired of all of the drugs) so I could start from scratch and limit the drugs. Gabapentin was amazing for my hot flashes, but it was the first to go because it really was doing nothing for my pain anyway. Neurotonin is similar drug which I tried, and it did nothing as well. As sophisticated as we should be, medicine does not do a good job with pain management!

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  3. Where I live, pain management clinicians will only work on patients who have symptoms that they can stick a needle into. My GP doesn’t feel qualified to Rx for chronic pain. Point is, you are fortunate to have found a group who will work for you. ☺

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