Category Archives for Pain Management

Painful Pins and Needles

I haven’t had a lot of luck finding someone who can help me clean my home and do my laundry on a regular basis since becoming ill. The last person I hired was wonderful. Unfortunately, for me, housecleaning was only extra part-time work she did to make ends meet. Fortunately, for her, she was able to find full-time work with enough hours and compensation that meets her financial needs. Her now full-time employment means that she doesn’t have the extra time – and I’m certain not the extra energy – to clean homes anymore.

Since losing her help, I haven’t been able to find someone or a service that will include laundry as part of housecleaning without charging an arm and a leg. So, I’ve returned to doing both tasks on my own when I have the energy and not too much pain, which means things aren’t always as tidy as I like them to be. This past weekend, I had to do laundry because my dirty towels and bed linens were starting to pile up. All the activity and energy I needed to get them clean caused a pain flare up and triggered a symptom I haven’t had for a long while: my feet and ankles are swollen.

The usual warning sign of feeling pins and needles prickling from my toes and up my legs all the way to my hips preceded this pain flare up. Feeling pins and needles always causes an extremely high level of anxiety in me because I know it’s what happens right before the level of my pain starts to climb; and once the pain starts to climb I have no control over how intense or painful or for how long the flare up will last. All I can do is hope that it won’t be so terrible that I’ll have to go to the hospital emergency room for help to cope and get some relief.

On the other hand, I don’t get any warning sign(s) before my feet and ankles swell. It just happens and it adds to the pain in my feet and ankles because they become tender to the touch. I never know how swollen they will become: at times, I’ve been unable to wear certain shoes or boots because my feet seem to grow a size. I never know how long the swelling will last: this is the third day so far and sometimes they’ve stayed swollen for weeks.

Furthermore, after all this time, my Pain Specialists don’t know the reason(s) behind the swelling. At one point, they believed they increased the dose of one specific medication I was taking (Gabapentin/Neurontin) too high. This made sense because one of its known side effects is swelling of the hands/ankles/feet. However, last year, when my Pain Specialist decreased the dose then eventually removed Gabapentin from my treatment the swelling didn’t immediately go away. Some months later, it did stop, and it stayed away since about the middle of last summer. Why it came back a few days ago, I’m not sure.

So, once more my legs feel as if they are on fire as the pain builds and they swell. I’m doing my best to keep my legs elevated because I hope it will help to reduce the swelling – even if it’s only a little bit – and staying off my feet can help me cope with the pain flare up. I’m also sticking closely to my medication schedule by taking them as soon as my alarms go off because I want to maintain a steady level of pain medication(s) in my system.

If things become unbearable, I’ll make my way to the hospital emergency room.

There’s not much more I can do…

 

The Pill Box

Every week, either late Saturday night or at early light Sunday morning, I go through the ritual of filling my pillbox with my medications. My pillbox has 28 compartments. Each gets filled with a varying number of medications in the form of pills or capsules. On average, I take a combination of about 32 pills and capsules each day. However, the 32 pills and capsules don’t account for all the medications I take daily because I have others that come in different forms i.e. liquids, inhalers, and – on the odd occasion when my gastrointestinal system protests against ingesting certain types of oral pharmaceuticals – suppositories. Early on in my illness, I was even prescribed a topical anesthetic for pain that came in patch-form, but it did little to reach the source of the pain deep in my pelvis.

The largest part of the pills and capsules that fill each pillbox compartment are medications I take to manage my pain. They aren’t all opioids/narcotics, but the majority of what’s in the compartments usually is. Unfortunately, not all these medications always do what they are prescribed to do. Therefore, over the last four years there have been many changes made to my medications. Changes in doses are usually an increase in strengths – as petite as I am I seem to need large doses to manage my pain –, but I’ve learned that dose increases doesn’t have to mean an increase in quantity. Some medications have also been swapped for others of equal strength when they have caused unexpected side effects or delivered no benefit at all after weeks and in some cases, months of hoping for some relief with them; and occasionally new medications get added to the mix in an effort to boost the benefits of what works.

The Pill Box – 1

The Pill Box – 2

Sometimes, the number of pills and capsules I take might fluctuate from day-to-day. That fluctuation depends on whether my doctor(s) writes prescriptions for medications with a minimum and maximum dose. Because my pain medications are largely opioids/narcotics, I try – not always successfully – to take the lower end of a prescribed dose when possible to manage my pain. My Pain Specialist prescribes my primary pain medication in two forms. The first is a long-acting opioid/narcotic prescribed to be taken multiple times each day that is intended to manage my pain for a scheduled period. The second is a breakthrough or ‘rescue’ dose of that same opioid/narcotic that I take in between the long-acting doses; especially in times when my pain levels are high, which is most of the time. I try to take that breakthrough medication on the lower end of the prescribed dose(s), when I’m having a good day, which is rare; or if I’m lucky enough to sleep through the night the overnight breakthrough dose gets skipped.

The main point of having a pillbox is to make sure I don’t miss scheduled medication doses because I take so many throughout the day. Unbelievably, I’m not always successful and might miss a dose of something from time to time, whether it’s because I get distracted or I’m fortunate enough to get some restful sleep. Nonetheless, the brightly coloured compartments of the pillbox that I fill with brightly coloured pills and capsules is my constant companion and may remain so as long as I need a reminder to take 32 pills and capsules – give or take a few – each day.

If you don’t have a pillbox, how do you remember to take your daily doses of multiple medications?

 

Sleep: The Unconscious Way to Cope With Pain

Have you ever had such intense pain, physical, or other, that all you could do to cope with it is sleep?

I’ve slept for the better part of the last 2 days. I had to attend a family event on Sunday afternoon. When I say “had to” I don’t mean forced to, I mean I would have felt horrible – worse than the pain I’ve had since – if I hadn’t attended because it was in honour of one of my favourite aunts who does whatever she can for everyone. However, between the drive to the home of my uncle who hosted, moving around to interact with all the family members and family friends; and then the drive home, my body had to go into near shutdown so I could cope with the resulting pain flare up.

By the time I arrived home around 11:00 PM on Sunday night, I knew I was in for a rough few days; not to mention my experience dictates that it takes at the very least two days for me to recover after going out to do anything. Upon arriving at my uncle’s house in the afternoon, my pain level was already climbing; and on the drive home, the soreness in my legs had already become unbearably intense. When my feet touched the ground as I got out of the car, it was definite that I would not escape the punishment for daring to enjoy life just a little bit while celebrating the life of someone I love. After shutting the door to my home behind me, I made a beeline for my bedroom to change into cozy pajamas then I went into the bathroom to perform the nightly rituals of brushing my teeth and putting my hair up so I don’t wake up with an equally painful tangled mess of hair to deal with.

I was in bed by midnight. It took some time to fall asleep because I was so uncomfortable with the pain building throughout my body. I vaguely remember waking a few times during the night, but I know I was too exhausted to awaken fully to take my overnight breakthrough dose of pain medications. I even slept late and missed taking my first large dose of pain medications on time at 6:00 AM. However, being late this one morning didn’t matter much because being asleep kept me unaware of the pain. The rest of Monday was spent in a groggy haze of pain medications and sleep, but I didn’t miss much because it poured rain most of the day and the grey sky outside was not at all appealing.

I woke up around 4:00 PM because my phone rang. It was my therapist calling me. I called him on Saturday shortly after coming out of my panic attack so he was responding to my message. I knew he wasn’t in the office during the weekend, but I felt that I had to talk to him as soon as it was possible to sort through why the panic attack might have happened. As usual, he helped me sort through the still lingering feelings and to realize how everything I’m coping with – including the current pain flare up – and all that I’ve lived through in my life are so deeply connected, it makes a panic attack a reasonable thing for me – or anyone dealing with so much – to experience. He also gave me some practical tips on how to cope if I have another episode: splash my face with cold water, put cold water/a wet cloth on the back of my neck, breathe into a paper bag, lay on the floor so I feel grounded, and connect visually with objects around me so I can know what’s real. I was grateful for that conversation and the clarity it brought.

I stayed awake for a few hours after that conversation. My friend R called for one of our weekly chats. Then I tried to make sense of the horrible news of the day and deciding what my stomach could tolerate so I could make a meal. I failed at both and fell back to sleep on my couch. I managed to wake up a few hours later to take my last large dose of pain medications and I might have stayed awake for about an hour or two. The next thing I became aware of was that for a second morning in a row my body opted to sleep as late as it could handle before waking to take my morning dose of pain and other medications. After doing that, I still had the need for two morning naps.

I also realize, sometimes I have to accept that it’s not always conscious methods that are best for coping with my pain.

 

The Beatles – Golden Slumbers/Carry That Weight/The End