Are you in Pain?

“Are you in pain?” Or “How would you rate your pain?” Or “Are you still in pain?” Or “Laura, I hardly touched you, you can’t be in that much pain?”

Hearing those questions repeatedly, especially in the hospital when they ask these questions at the beginning of each shift, I can feel exasperating at times. I am sure those people suffering with a chronic illness or chronic pain finds themselves in similar situations when asked about their pain. Also our tolerance of how much pain we can endure before reaching for pain medications like Tylenol can be different too. GBS and being in daily pain goes hand-in-hand with other. Again, comparing the pain felt in two GBS survivors with the same variant (AMSAN for me) can also vary depending on your severity of your case. 

To answer your question, “Are you in pain?” Yes I am. I am in pain 24/7 primarily in my lower arms and lower legs. The numbness, tingling and the feeling of pins/needles is constant. If I do even the slightest exertion with my hands (making a fist) or lifting my arms/legs in physio - the numbness and tingling get heavier to move and it spreads upwards on the limb. I describe it as “My body is humming”. I don’t necessarily need to take Tylenol unless it remains for over an hour since it started. My answer for “How would you rate your pain?” - my zero starts at two. I have just have built up a tolerance to my “normal” feeling of pins and needles. It is when the rate goes 6 or higher, this is when I contemplate getting a dose of Tylenol to help calm the pain. While in the hospital (2016-2018), I was given opioid pain medications but I felt quite drowsy during the day. I no longer want to take opioid medications mainly for this reason (haven’t since beginning of 2018). The only prescribed pain medications I take are Cymbalta and Lyrica throughout the day. Unfortunately with Lyrica the side effect I get is edema which I already have an issue with; so we have to keep it at a low dose. It’s all a balancing act with medications and how your body reacts. Constipation and dehydration are my two other conditions I have to balance with my medications (Lasix) and being immobile too. 

With GBS, one of the recovery residual effects is becoming hypersensitive all over your body as your nerves begin their healing. When you are hear “demyelinating” vs. “axonal damage”, it’s like deer in headlights - What does this mean? In layman’s terms and simple explanation - if you have demyelinating of the nerves - it is the outer coating of the nerve that has been damaged by the virus. This coating can regenerate and can contribute to full recovery from GBS. If you are told you have axonal damage to your nerves, the outcome is poorer than demyelinating nerves. Why? The axonal part of the nerve doesn’t regenerate or their is limited recovery. This what has happened to me - severe axonal damage - I’m assuming this is why I am still a quadriplegic after 3.5 years. Obviously, I have peripheral neuropathy (disease of the peripheral nerves) but it is specified as Sensorimotor Neuropathy - disease of the sensory and motor peripheral nerves. My neuromuscular physician told I would be looking for less numbness/pins and needles in the recovery of my sensory peripheral nerves and would be looking for muscle strength/tone in the recovery of my motor peripheral nerves. In the meantime, I will need to learn to increase my tolerance in pain and adapt in accepting this is my now in my daily life. 

As much we try to desensitize my hands and feet, they are still the most painful to touch by hands or the cloth they use to clean me, put cream on me  or a towel to dry me. Electric pulses dance through my toes and hands that it makes me jump sometimes (especially with my fingers). For the past 6 months or so as I sit in bed or wheelchair, those electric pulses feel like they hit my finger or foot joints increasing my pain level. Definitely not fun. 

Being a quadriplegic and having a neurogenic bladder (bladder dysfunction due to nerve damage) I must have an indwelling Foley catheter for emptying my bladder. This is a constant bone of contention for me because of the amount of pain it causes - many times leading to tears. I feel every movement of the catheter in my bladder. My complications with the catheter is a regular occurrence. While in the initial hospital visit, I had the common complications of Foley catheters - recurrent UTIs which you are given antibiotics to treat the UTI. Unfortunately, my UTIs are now caused by colonized (inactive) organisms which are resistant to antibiotics. This has lead to having a excess of debris which blocks my catheter. For the month of June, I have had 4 catheter changes and there are still 6 days left of the month. To put it in context of people who have Foley catheter, these are normally changed every 3-4 weeks. You can see how my frustrations can get the better of me, ending in tears. To be proactive, I now 2 flushing of my catheter twice day (day & evening shift) to help prevent the blocking of the catheter. 

So, yes being in daily pain is a part of my life. I don’t think it will ever go away, sad to say. My level of pain changes day to day depending what I do. The simple action of being turned side to side for changing and transferring can be brutal that it can wipeout my energy and send my body’s humming into overdrive. As you can imagine, my pain impacts my mood for that day. When the pain gets too much, it’s hard not to look ahead in the future. In frustration and exhaustion, I say “I can’t do this for another 15-20 years” or “I am so done with this!”. To let you, this is how I vent, it is not saying I am giving up - I’m not giving up that will recover more in the future. This is how I am feeling in that moment.