Chronic Pain and Suicide Risk (Or why aren't we addressing such the need for help in such a high risk group?)

I recently had a doc say to me "Fibromyalgia won't kill you."

I know this. I've dealt with this condition most of my life.

I shot back, "Yeah, I know. The other half of that statement is 'But it will make you wish you were dead.'."

Let's just say that particular doctor's visit didn't go well.

The reality is that there are many chronic pain conditions and illnesses that in themselves, are not deadly. That part is true. But the damage that these conditions cause to our lives, livelihoods, bodies, relationships, and even our daily interactions can and do place individuals with chronic pain and chronic illness at a higher risk for suicidality.

A recent article published by the American Chronic Pain Association (2016) reports that a recent survey they conducted showed that 47% of the respondents (chronic pain patients) have contemplated suicide. Given that 100 million Americans are living with chronic pain (according to the National Institute of Health), one would think that there would be more attention given to what is such a high risk group and such a large part of the population.

And frankly--even more concerning--is that the recent push from the CDC and other federal entities to limit the access of opiate pain medication has had an increasing negative impact on suicide rates. In short, since chronic pain warriors are having more difficult accessing the medication they need to control their pain, the suicide rate among this population is rising (Pain News Network, 2016).

Why are Chronic Pain Warriors at higher risk for Depression/Anxiety?

There are a number of factors that can contribute to depression and anxiety, including not enough sleep (or enough restful sleep), isolation, not getting enough Vitamin D, some health conditions, a chemical predisposition to mental health challenges, and many others.  For instance, if someone with Fibromyalgia has sleep disturbances, this is not only going to cause an increase in the level of pain, but it's likely to impact the person's ability to interact with the outside world (leading to increased isolation), and may start a cycle of poor sleep due to pain leading to more poor sleep and so on.

And then, there is the stigma. This comes from everywhere. It's in the judgement of every person who watches me get out of the car when I have to use an accessible space to the coworkers who wonder why I called in sick to the doctors who tell me I shouldn't feel this bad (when they themselves can't begin to fathom what I feel). It's from well meaning but misdirected individuals who offer the "cure" their brother's second wife's cousin is selling this week for all conditions. Maybe we have family and friends that we feel we're asking too much of or have become a burden to.The stigma is isolating as well.

And, of course, there is stigma in reaching out for help with mental health. There are the lack of resources for individuals reaching out for mental health. In addition, while there is an increasing understanding of the impact of chronic pain and illness on mental health, this is still a growing movement, so the professionals who are competent in chronic pain tend to be scarce.

How do we address this?

The good news is that there is a growing trend (Thanks Medicare!) to have patients of all backgrounds complete a Patient Health Questionnaire (PHQ) when they see their PCP. The PHQ is a screening tool for depression, and it also screens for suicidality. This can be a very useful tool, and since Medicare implemented requirements for screening tools to be utilized as a part of patient care, other insurance companies are noticing and following suit.

Social media has also been a great place for chronic pain warriors to find support from fellow chronic pain warriors, and some areas have in-person support groups. These can be great resources.

Ultimately, though, care for people like me has to be holistic and address my mental health needs as well as my physical health needs. This means all of the systems of the healthcare system need to come together to treat Chronic Pain Warriors as the whole person that they are (chronic pain and all). It requires an approach that is common sense in many ways, but is rarely put into practice: treat the whole person, not just the problem area.

And finally, medicine and the CDC need to realize that there is an appropriate place for opiate pain medications in chronic pain management. It's not necessarily the whole treatment plan, but it can be part of a comprehensive treatment plan, and for many people, it's a necessary part of treatment. It may be the only thing keeping someone going on with the fight against their pain.

If you or someone you know are experiencing suicidal thoughts, get help. The National Suicide Prevention Lifeline can be reached by calling 1-800-273-8255 or visit their site for live chat.

Update (Or why I've disappeared for a while)

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