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

Reality Bites (or How Invisible Illness Plays Out on "Reality Television")

So, I have a confession to make:  I enjoy watching reality television.

I know, I know.  It's not really based on reality and most would likely agree that it's not stellar television.  Part of the reason I enjoy it is that I love learning about people and getting into their lives. (Yes, that's the social worker in me.)  The other reason is it's generally pretty mindless, and quite frankly, I sometimes need to shut my brain off and watch some mindless television.

Years ago, I became sucked into the "Real Housewives" franchises (yes, multiple) on Bravo TV.  For the most part, the show has been a way to escape day-to-day drudgery and the homes and obviously different lifestyles were so far removed from my life that I couldn't relate.  I could watch without getting sucked in and it could stay mindless entertainment that I could laugh at (and sometimes, laugh at while rolling my eyes).

But I have to admit, the Real Housewives of Beverly Hills managed to suck me in in a different way. The last couple of seasons, one of the cast (Yolanda Foster) has been bravely coping and fighting Lyme Disease and the impact that it's had on her life has been featured on the show.  Chronic Lyme Disease can be debilitating, and it's changed her life in drastic ways (which she addresses on the show).  For the most part, her friends seemed to rally around her, and then...

Someone accuses her of having Munchhausen's Disease. Now, Munchhausen's is classified as a mental disorder where the individual makes themselves ill in order to gain the attention of medical professionals and others. (It's quite a bit more complicated than this explanation and is extremely rare.  In fact, there are some in the mental health field that deny that it exists and that all of the symptoms should be classified as Malingering.)  But, in reality, what this person was suggesting is something that everyone with Invisible Illness faces--"I don't believe you're sick."

One of the reasons this individual brought this up was because of the photos Ms. Foster posts on Instagram (which includes selfies of when she is ill and receiving treatments and alternatively, when she feels well and is able to enjoy her life).  I found myself yelling at the television as if I were watching a sporting match.

Here's the thing. Those of us living with Invisible Illness are sick. Some of us advocate and educate. Ms. Foster is brave enough to post photos of herself when she is ill and receiving treatment as a way to advocate and educate, and continues to be part of a cast on a reality show. I write a blog, train professionals how to work with individuals in the mental health field who are living with chronic pain, and provide mental health services to individuals with chronic pain. Others create memes and t-shirts to raise awareness.

But we are also people. We are people who have lives and enjoy having fun.  We do not always want to be sick.  We do not want to always live in the illness.  We want to be normal.  We have interests outside of advocating and educating and being ill.  On good days, we can even enjoy some of those interests.  It does not mean we are faking our illnesses.

A list of medical definitions in my medical chart.

ADHD and Fibromyalgia (Or...Squirrel!)

Okay, so I have something to admit.

I get distracted easily, especially if I'm dealing with a lot of stress. I've joked for years that I had some weird form of Attention Deficit Hyperactivity Disorder, but as it turns out, there have been a number of studies showing that there is a link between ADHD and conditions like Fibromyalgia and Chronic Fatigue. And when you think about it, it makes a lot of sense.

Disrupted Sleep
Let's face it: when you don't sleep well at night--or sleep well consistently--it impacts the ability to concentrate and focus on tasks. And Chronic Pain Warriors are notorious for disrupted sleep. Since we have disrupted sleep, our ability to concentrate and focus on tasks can decrease, and the more the sleep is disrupted, the more challenges we have.

Increased Sensitivity to External Stimuli
Working in mental health, I've worked with kids who deal with ADHD, and I once heard a description that I think describes the experience perfectly:  Sitting in a classroom, trying to focus on the task in front of the student, but the brain keeps picking up on things like the ticking clock or the rustling of papers and it makes it difficult to focus on what the teacher is saying.

Those of us with conditions such as Fibromyalgia have an increased sensitivity to sounds, smells, and other external stimuli. So, the ticking of the clock can be extremely distracting (and potentially irritating).  In times of increased stress, our sensitivity can increase, making our ability to focus even more challenging.

Increased Fatigue
This is also linked to problems sleeping, but living in a body that is in constant pain is fatiguing. When the body--and brain--are fatigued, the ability to concentrate and focus on tasks becomes more challenging.

Co-morbid Conditions
First, "co-morbid conditions" means other conditions that tend to exist in addition to the "main disorder".  For instance, for individuals with Fibromyalgia, it's not uncommon to also develop conditions such as Reynaud's Syndrome, Hypoglycemia, or Migraine.

Using these three as examples, if you're dealing with poor circulation in your extremities, such as in the case of Reynaud's, it's going to be difficult to focus on things when your hands and feet feel as if they're freezing off.  Or in the case of a Hypoglycemic moment (low blood sugar), the ability to focus can fly out the window. And Migraine? Well, anyone who has experienced the nausea, light sensitivity, and feeling of inexplicable pain in the head can tell you how hard it is to focus when one of those things hit.

While I was writing this post, I found myself distracted a number of times by the cars driving by outside, the sound of the A/C clicking on, the show on the television, my phone, more cars driving by, by a piece of paper on the front lawn, by my dog dreaming on the floor, by the headache that's starting to form because of this cold that I've caught....

The list can go on and on. In times of higher stress (physical, mental, and/or emotional), my ADHD is worse. It can be exhausting, working to focus on tasks, particularly if I find myself getting distracted easily. My husband has learned that if he wants to talk to me about something, he has to make sure he has my full attention before starting the conversation. It's not uncommon for me to become distracted by my own thoughts while I'm having a conversation with someone. It's definitely worse when I'm having more stress or pain.

The biggest lesson that this has taught me is that I need to slow down, focus on one thing at a time, and be gentle with myself when I'm more distracted.  I've learned to laugh it off at times, despite the fact that in a world that moves 100 miles an hour, it's not the easiest thing to do. It takes time, practice, and patience.

Be gentle with yourself today. Wishing you low pain, high energy, and laughter.

Definitions of Medical Conditions Listed in My Medical Chart

Mental Health and Chronic Pain (or No matter how much you try, you can't separate one from the other.)

Mental illness is still a somewhat taboo subject, despite the fact that 1 in 5 Americans experiences mental illness in a given year and 1 in 20 experiences a serious mental illness (one that substantially limits the ability to function in life.)  For more information on these statistics, check out the National Alliance on Mental Illness. 

Individuals dealing with chronic pain/invisible illness are at a higher risk of being depressed/anxious, and yet it's the double whammy of stigma.  Furthermore, so much of medicine still wants to separate the "physical illness" from the "mental illness".  We're a whole person, and yet our treatment is silo-ed.  And this doesn't work in the long run.  

And those living with chronic pain/invisible illness frequently get "accused" of being depressed.  My response to that?

Of course I am. I have to live in a body where my mind is sharp and wants to do all sorts of things, but my body says "Nope." I don't sleep, so my body never gets a chance to heal, and I never get a chance to get all those good benefits of sleep, so yes, my mood is poor. My disease keeps me isolated at times.  

While Lupus/RA can be fatal because of what kind of damage they can do the body, Fibromyalgia is not.  And yet, there is a number one cause of death to those individuals who are diagnosed with Fibromyalgia:  suicide.

So, how do we keep someone from being a statistic?  First, we need to realize that a person experiencing chronic pain/invisible illness is a whole person.  Yes, they have pain, but there is so much more than just pain.  That pain is affecting how they live their life.  That pain could be impacting their loved ones around them.  

To start, a disclosure:  I'm a therapist, so I'm pretty big on the whole "everyone can benefit from counseling in some way" thing.  I've worked with couples, families, and individuals of all age groups, from those individuals who just needed a little extra assistance to the Seriously and Persistently Mentally Ill.  My "go-to" modality tends to be Brief Solution Focused Therapy with a little Cognitive Behavioral Therapy thrown in, but I'm also trained in some other modalities and have experience in working to help address trauma.  

That said, I truly believe that anyone diagnosed with chronic pain/invisible illness can benefit from some mental health support.  Therapists can assist in processing the trauma of being diagnosed and living with chronic illness, can assist in being a sounding board for processing thoughts and feelings, can teach coping and relaxation skills, can provide couples and family counseling, and can just generally be one more person in your corner for support.

But not all therapists are going to be right for all people or all conditions. Just like finding a primary care doctor or specialist who will work with you, it can be a process to find a therapist that fits with you, so here are some helpful hints:

• Define your preferences for a practitioner.  Would you rather work with a male or female (or is this not an issue for you)?  Where would you like to receive your services (office?  maybe via phone?  online?)  Some of this will likely be limited by insurance or your ability to pay out of pocket, but insurance companies are required to provide the same level of coverage for mental health as they as physical healthcare.  
• Ask questions of the potential therapist.  What is their background?  In what are they experienced?  Are they familiar with the condition you're dealing with (or are they willing to learn about the condition)?  
• Just a side note here.  Do not be concerned if the therapist starts asking you questions about your condition or your experience with the condition after indication that they're familiar with it.  Everyone experiences things differently and what could be a very problematic experience to one person may not be that problematic for another.  Even if I have another chronic pain warrior sitting across from me as a client, I will still ask them what they are experiencing, how that experience is for them, and what they hope to gain from counseling. That's how client centered therapy works--we start where the client is at that moment and move from there.
• Define why you are seeking mental health treatment.  Are you looking for ways to cope or manage pain better (without additional medication intervention)? Are you looking for ways to process your feelings about your condition?  Are you looking for couples counseling so that you and your spouse can receive help around this issue? Defining what you hope to gain will help you find an appropriate therapist who utilizes an appropriate type of treatment to assist you.
• Educate yourself on different treatment modalities. There are probably hundreds, if not thousands of different types of treatment modalities that exist. Some, like Brief Solution Focused Therapy, is more of a problem solving intervention that is very short term.  Cognitive Behavioral Therapy can also be short term, and it focuses on changing thoughts and behavior.  There are some specialty treatment out there that focuses on trauma (and some are said to be beneficial for pain management), such as Eye Movement Desensitization and Reprocessing Therapy (EMDR).  There are even treatments that utilize art therapy and art therapy techniques.  Not everyone is going to be comfortable receiving all types of therapeutic treatments, and if you're not comfortable with it, it's not going to work for you.
• Understand that therapy is work.  Frankly, if you're not willing to do the work, no therapist or modality out there will likely work for you.  But the work should be balanced.
• Be open and honest with your therapist. They can only help you if they have all of the information. In addition, if something they suggest feels like something you aren't going to do, tell them. They're working to help you, and so giving lip service to something only hurts yourself in the long run.

If you or someone you love is experiencing suicidal thoughts, please ask for help.  The National Suicide Prevention Lifeline can be reached at (800) 273-8255.  

For those interested in online therapy with me, my online office can be accessed here.

Definitions of conditions listed in my medical chart.