When I started this blog a bit over a year ago, I wanted to provide a glimpse of what it's like living with invisible illness. Part of that meant educating on a variety of conditions. I also wanted to make it a resource for others who were suffering.
But there's also the part where I have to be open about my experience and how my illnesses affect me. And so, with some trepidation...
It's been a very rough few months for me.
I've been dealing with an increase in my pain fairly steadily over the past few months. It got to the point where I was having to take my PRN (as needed) Opioid pain medication nightly in order to sleep. In late February, after talking with my doctor, I decided to try a new medication that had been suggested to me over the past couple of years but I'd been hesitant to try.
Please note: nothing I say in this blog should be taken as medical advice. Please discuss any medications and medical concerns with appropriate medical professionals.
Naltrexone is an Opioid Antagonist used to help individuals who are addicted to Opioids to stop while helping their pain. There has been some research that Low Dose Naltrexone (LDN) can be useful to help pain in individuals with Fibromyalgia. The reported side effects are generally pretty minimal and well tolerated.
Well, by most, anyway.
Two days into taking the LDN, my pain had spiked significantly and I was experiencing other flare type symptoms. Four days into taking the medication, my depression and anxiety had started to significantly worsen. By day 5, I was incredibly labile and increasingly suicidal. On day 7, I woke up experiencing tactile and visual hallucinations. That was the point where I notified my doctor and stopped the medication.
I wish I could say the side effects immediately reversed upon stopping the medication, but even 2 1/2 months later, I am still struggling with the increase in both my depression and anxiety. I began having almost nightly panic attacks that would keep me from sleeping and my suicidal ideations became very severe. (My medication has been changed to include meds to address these issues, and over the last couple of weeks, things have started to improve mood-wise.)
Aside from the mood side effects, physically my pain and fatigue levels have been beyond ridiculous.(Shortly after stopping the LDN, I caught a nasty Upper Respiratory Infection that turned into Asthmatic Bronchitis that left me very ill for a month, so that hasn't exactly helped matters any.)
Currently, I am able to work...some. It's exhausting. On days where I don't work, I sleep or rest the majority of the day. I've been slowly trying to incorporate other activities back into my life such as gardening, playing with the dog, spending time with friends, etc, but it's been slow going and adding those activities means that I'm recovering for the next day or two. Things that most people would not even think twice about require so much energy from me.
For instance, something that has become very taxing for me to do is talking on the phone. I already tend to avoid talking on the phone because of my hearing problems, but there is so much energy that is required to follow and track conversations in addition to struggling to hear, it wears me out too easily. There are a handful of people that I can comfortably talk to on the phone because they understand that I can only handle short conversations, but generally texting is best for me these days.
The cognitive challenges have definitely become more noticeable and frustrating. I'm not tracking conversations as easily and there just seems to be a fog over everything (thought-wise) that I've been fighting through. For someone who can usually multi-task and recite regulation from memory, it's beyond frustrating. I feel so stupid these days. I can't keep track of days or appointments, even with my reminders in place, and I'm not this flaky person. I don't want to be this flaky person.
I am fighting my way back, but it is slow going. My mood is slowing improving and I'm finding enjoyment in activities again. I'm finding my laughter again. I'm still exhausted and prone to severe anxiety attacks, but the medication is helping. It's a slow recovery, though. Unfortunately, the combination of the slow recovery and lack of energy leading to isolation has made the mood recovery even slower.
Physically, there have been some new developments, and I'll be seeing several of my specialists this month to figure out the plan. Not all of this is related to the attempt with the LDN; it just added to the situation to make it the perfect storm.
So, today, I'm going to focus on the time that I was able to spend with family, laughing at the goofy antics of our awesome dog, the beautiful plants growing in my garden, and the fact that I was able to give some very cool gifts to two very amazing women in my life. It was a good day.
A list of definitions in my medical chart
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