Contraindications (Or My Meds Cause What Side Effects?)

Medicine in today's world is truly a wonderful thing.  Diseases that were once wiping out hundreds of people have been eradicated and viruses that were once considered a death sentence can now have their impact mitigated so that people can live normal lives.  Yes, science has come a long way and people are living longer, healthier lives.

Or longer, somewhat healthier lives.

Or, in some cases, longer, but not healthier lives.

Unfortunately, while there are many wonderful medical advancements in this world, many of these advancements come with some sort of downside.  It's a balancing game of outweighing the costs vs. benefits, and for the most part, taking the medicine or undergoing the procedure is of greater benefit than the risks of not taking the medicine or undergoing the procedure.  But while the overall benefits outweighs the risks, it doesn't mean that there aren't impacts of the medicine or the procedure that don't negatively impact the person.

Common complications of medications are side effects.  The fact is that each and every time a person puts something into their body, there is an impact.  Most of the times the impacts are good (or the positive impact outweighs the negative consequences).  For the most part, medicine would call side effects tolerable negative reactions to a treatment that helps treat/manage/cure a condition.  And--for the most part--they'd be right.

But those with chronic illness frequently tell the story as to how the side effects of some treatments outweighed the benefits of the medication.

The above meme is meant to be humorous, but unfortunately, there's quite a bit of truth behind it.

When I was first diagnosed with Fibromyalgia at the age of 15, I was provided with a prescription of Naproxen Sodium (which is now known as Aleve, and is available over the counter).  Nine months later, I underwent an Upper GI Series, they discovered an ulcer brought on by the medication, and that was the end of my experience with it.

The medication after that was Nortriptyline, a member of the class of Tricylcic Antidepressants.  It's an older drug, typically well tolerated, and this one lasted for a number of years.  Unfortunately, it stopped working.  I still haven't lost all the weight I gained while on it.

I can't do medications in the class of Selective Serotonin Reuptake Inhibitors (SSRIs), a class of antidepressants which contains Prozac, Effexor, Paxil, and others.  Unfortunately, I'm one of the people who experience an increase in suicidal thoughts while on those medications.  And yes, that sort of defeats the purpose.

I was on Gabapentin (Neurontin) for a while.  It's an anti-seizure medication which has also shown great impact on chronic pain conditions such as Fibromyalgia.  And yes, it helped the pain immensely.  It also negatively impacted my vision, and so no more Gabapentin for me.

My current medication list does contain medications that mitigates the side effects caused by other medications I take to control my conditions.  At this point in my life, my medication regime causes tolerable side effects.  I do recognize that there is a strong likelihood that that will change.  Either the side effects worsen or the medication stops working (or both), and then it's back to the drawing board to figure out how to manage things.

I also recognize that there may be a time in my life where I am on notoriously side effect ridden medications, such as chemo or Prednisone.  (I have been on Prednisone for short durations for asthma, and it's not fun.)

So how do I handle the issue?

• I'm up front with my medical team as to what side effects I find unacceptable and which side effects I'll tolerate.  
• I research the heck of out the medications/treatments that I'm on/undergoing and potential treatments.  I ask questions to the medical team.  If a new medication is suggested/recommended, I specifically ask "Are there any contraindications with my current medication list?"
• I track my side effects, particularly if I find them troublesome, to discuss with my medical team.
• And finally, as I've stated before in the blog, since it's my body, I make all final decisions.

Please do not take anything in this post as medical advice; this has been my own experience with particular medications, and you should discuss any medication concerns with your own medical team.

A link to the list of definitions of medical conditions I have in my medical chart

Pass on the Platitudes (Or, Please Do Not Tell Me to Get Well.)

There are a bunch of articles and memes out there that talk about what sorts of not-so-great things people say to those of us dealing with Chronic Pain/Invisible Illness.

But there's another category of things said that are meant to be helpful, usually come from well meaning friends, family, and acquaintances, but can tear us down just as much.  Here's a list of some of the most frustrating, but also, most common.

"Get Well Soon."

The conditions I have are chronic.  The damage that they've caused to my body is permanent.  I will have good days, but this isn't something that I'll recover from.  I'll never return to perfect health. There is no recovery from these conditions. There is no "getting well."
Statements like "Get Well" or "Get Well Soon" make me feel dismissed, as if either haven't been listening, don't believe me, or don't take me seriously.


"You Should Exercise More/Lose Weight/Eat a Certain Way [or fill in the blank with other helpful advice]."

First, anytime someone starts a sentence with "you should", my inner rebel (who I believe to be a 16 year old girl) laughs and says "make me."

Unless you're on my medical team and I've asked for your medical opinion and advice, I have no interest in what you think I should do with my health and body.  Your well-intentioned--but unsolicited--advice is not wanted.

If someone says something like this to me, I don't find it helpful.  I find it dismissing and in some cases, quite hurtful.


"My cousin's ex-girlfriend's brother's vet had that and tried XYZ treatment and is cured!"

I have to say that any approach that starts off listing a variety of family members or friends who have been "cured", it sounds like an urban legend, which takes away a lot of authenticity of the statement.

I've been going through this for a long time now and have run the gambit of treatments, both of the Western Medicine variety and the Eastern Medicine variety.  In the past, for a number of years, I successfully controlled my Fibromyalgia with diet, exercise, yoga, meditation, massage, and acupuncture.  Unfortunately, that is no longer an option, particularly since I now have conditions that must be controlled through medication otherwise I risk more damage to my body.

I can safely say that I have been on almost all medications that have been prescribed for Fibromyalgia at least at some point in my history.  The few that I have not been on have been because they're either contraindicated (I was on a medication in that class and it did not go well) or I refuse to go on it due to side effects (i.e.-Lyrica and the weight gain).

And there are people and organizations out there who attempt to profit off of people like me--those dealing with chronic pain/invisible illness and wanting some sort of relief from the pain and fatigue. Because of that, I'm pretty cautious these days about what I'll try.  So, I appreciate the advice, but please, save your breath.


"I Know How You Feel."

No.  You don't.  Even individuals who experience chronic pain cannot say that they know how another person experiencing chronic pain feels or what they're going through.  There may be certain circumstances you can relate to, but no two people experience these sorts of things in the same way.


"Just Think Positive."  "Think of All the Good You Have in Life."  "Think About What You're Grateful For."

These statements are so dismissive to someone going through a rough time.  Is it a good thing to look at things positively?  Sure.  But there are times in everyone's life when someone just needs to vent or needs support.  By saying these things, not only have you not offered support, but you've also dismissed what they're experiencing as something that's not important to you.  And since these conditions can start to encompass the entire being, you've just managed to say to them that they're not important to you.


"Other People Have it Worse than You."

Yes.  There are other people in the world who have it harder than me.  I acknowledge this.  It's one of the reasons I advocate for individuals living with Chronic Pain/Invisible Illness.  It's also why (in my professional life) I've chosen to work with and advocate for individuals experiencing Serious and Persistent Mental Illness.

But this statement is so hurtful and dismissive.  Imagine you've just gone through the worst day of your life, and a loved one says this to you upon you venting about it.  Doesn't feel so great, does it?


Helpful Things to Say
If you want to offer support, try these:

"I believe you."
"I'm here for you."
"How are you?"
"How can I help you?"
"Would you like to talk about it?"
"Thank you for talking to me about this."


A link to the definitions of conditions listed in my medical chart

Personal Costs (Or The Costs of Having to Let Go of Dreams)

At the age of 15-when I was diagnosed with Fibromyalgia- I had dreams of going to Saint Louis University as a pre-med student and then following that up with a stint at Saint Louis University Medical School.  My ultimate goal was to either be a surgeon or an ER doc.

I made it to Saint Louis U and started out as pre-med.  At that time, I really didn't like how managed care was progressing and wanted to be able to help people, but do it without insurance companies dictating my treatment plans, and so I switched to Social Work.  (The irony of this is that I ended up as the "red tape" in a managed care organization-a publicly funded managed care organization-for a number of years.)  But I made a conscious decision to change my major and focus of my education, and while there are definitely times I wished I had stayed the path into medicine, I'm mostly happy with the career path I've chosen.

I want to emphasize that I chose those changes.

I've worked in a variety of fields under the social work umbrella, but my primary focus has been mental health.  I've got experience working with kids and adolescents, adults, families, foster care, adoption, trauma, serious mental illness, and a variety of other areas, but one of my biggest areas of expertise is that of mental health policy.  I worked in Quality Management and Compliance for a number of years, chairing meetings, consulting with county and state personnel, and just generally making a pretty good name for myself throughout the state for my knowledge and participation in the policy arena.  I was one of the best in the field.  I was on track to become a Mental Health Director one day.

But then my health had other ideas in mind.  I went from being a non-stop one woman show (because of the way the county I worked for was structured, I ended up with a lot of oversight responsibility) to barely being able to get out of bed most days in a matter of a couple of years.

Bye-bye dream of being a Mental Health Director.
Bye-bye to being a force to reckon with in the policy arena.
Bye-bye to my good reputation.
Bye-bye to my working full time.
Bye-bye to a solid retirement plan.

Please don't get me wrong.  I love what I am doing now.  I am still in mental health, working as a clinical director, and getting to do a lot of things I really enjoy like training and clinical supervision. I couldn't ask for a better group of people to work with.  But I am not working full time.  (I am also building a private practice.)  And I would have liked to been able to choose this path in a way that didn't damage my reputation or my financial stability.

What other things have these conditions cost me?

I don't have the energy to spend as much time as I'd like with friends and family.
I don't have the energy/lack of pain/hand strength to enjoy being out with my camera as I once did.
I don't have financial security.
Because of the financial changes and the amount of debt, I worry constantly (and the added stress isn't helpful for any of the conditions).
New cars, new clothes, fun trips--those things that many seem to take for granted fall way down the list when it comes to buying things.

And for the people who say things about individuals with invisible illness not wanting to work?  I've generally found those with invisible illness tend to be an overachieving sort of people until our bodies give out on us.

A link to the definitions listed in my medical chart

Incongruence (Or why I can be smiling and still reporting a pain scale that's off the charts.)

In mental health, we spend a lot of time evaluating a person's mood (what they're feeling, how they're feeling, if they're happy or depressed --or any variety in between) and their affect (how they appear). Most of the time, in the general population, people reflect how they feel.  So if they're happy, they're smiling; if they're sad, they're not necessarily smiling.  In the field, in these cases, we say that someone's mood is congruent to their affect.

But sometimes, people who are happy do not reflect this.  Or they may not appear to be much of anything, but they report differently.  In these cases, we indicate that this person's mood and affect is "incongruent".  (Yes, spellcheck, that really is a word.)

In my 20+ years of living with chronic pain and invisible illness, I learned that I don't want to live in the pain.  I'd rather be smiling and laughing.  Humor tends to be my default.  (And I'll be the first to make jokes about myself.)  Anyone who's ever been in one of my trainings or spent time with me as a supervisor knows that I have a dry sense of humor and I'm not afraid to use it!  (But only when appropriate of course.  :) )

But I also tend to use it with my medical team.  I tease my acupuncturist that he's my monthly torture appointment (those cups hurt!) and I joked with my rheumy the other day that my pain spike is related to the seasonal change that we have yet to have, but that my body says we should be having. Humor also tends to be my mask.

I've become so practiced at wearing my mask that the only people who see me not wearing it are those who are the closest to me.  The ones who know me really well can see through the cracks in my mask when I'm not doing well.  They can see past the humor.

But the doctor I've just met for the first time?  They only get to see my mask.  I might not make jokes with them, because they won't realize I'm joking, but they get my pleasant affect and demeanor.  And yes, I get double takes when I present as pleasant, smiling, and report an '8' on the traditional pain scale.  Or I receive looks of disbelief.

What a lot of people don't realize is that handling an 8 with humor--when possible--makes that pain feel better than handling an 8 with depression or anger.  It's still an 8, but with a little bit of humor and pleasantness, I can fake my body into believing that the pain is actually a 7, even if it's just for a few moments at a time.

This incongruence is why I have such a difficult time when medical professionals attempt to rate someone's pain only by how they're presenting, rather than asking for a self report.  What someone else's definition of what a particular pain level should be based on what an individual presents as--particularly if they have never experienced said pain level--isn't an accurate reporting tool.  The pain scale is really a self-reporting scale.  It's my experience of the feeling of pain in my body.  That experience--the sensations of pain, the location, the quality, the severity--will change from person to person.  My "8" might be someone else's "10" or it could even be someone else's "4".  But I've dealt with this so long that there are extremely few medical professionals who could come close to evaluating my pain level by studying my facial expressions and body language.

Now, as a caveat, are there people who will report high pain levels to get the "good stuff"? Absolutely.  But even those people should not be criminalized; addiction is a disease and should be treated as such. And by assuming any person who reports a high pain number with an incongruent presentation is simply drug seeking?  That's just doing a disservice to individuals experiencing chronic pain.

A link to the definitions of conditions I have in my medical chart.

Suppressed Immune Systems (Or My Body Is So Busy Attacking Itself, My Immune System Can't Fight Things Off)

It's a busy day at work and suddenly, from across the room, someone sneezes. Immediately, my senses go on high alert and my mind goes into Def-com 5 mode, running through the lists of my "avoid illness" supply list at home.  Or I'm spending time with family, and someone coughs a bit, I try not to make it obvious as I avoid being close to them.

And no, I'm not a hypochondriac.

The unfortunate reality is that a common cold or the latest flu virus that makes a "normal person" sick for a few days can knock someone like me out for a few weeks.  The fact is that when someone's immune system is occupied with attacking one's own body, there's not a lot left over to fight off the viruses and bacteria that are out there that makes people sick. And so it means that it doesn't take much exposure to something to make one of us sick and we can get sicker with the bug and for longer than the average.

All this in addition to the pain and fatigue--how did we get so lucky!

I currently have a cold that my husband brought home with him.  As soon as he felt something coming on, we went through the steps.  Zicam for both of us, check!  Healer's Chai Breath Drops for me, check! Halls Vitamin C Drops, check!  He got over it very quickly, in maybe a day and a half.

I'm on day 5 of the cold, and it seems to still be picking up steam.

Chronic Pain Conditions, Autoimmune Conditions, and all that are associated already tend to isolate those individuals dealing with them, but to have to avoid people during cold and flu season?  That tends to just add to the feelings of isolation.  So how does one deal with all of this?  Please note: This is not a substitute for medical advice from your physician. Always seek out a physician for medical advice pertaining to your health circumstances.

Here's a few tips I use to try to stay as healthy as I can:

• Good sleep hygiene
• This means going to bed at the same time and getting up at the same time everyday;
• Minimizing television and other computerized device usage in the evenings before bed; 
• Minimizing caffeine intake in the late afternoon and evening; 
• Minimizing alcohol intake (it can keep people awake and disrupt sleep); and
• Minimizing sugar in the late afternoon and evening.
• Good hand hygiene
• Not sharing utensils or drinks
• Regular light exercise
• Stress Management techniques
• And the utilization of homeopathic/holistic treatments when necessary.  (Please note that I am one of those individuals unable to take the flu vaccine, and the common antiviral medications make me more sick than the virus does typically.)

The fact is that I know I won't be able to avoid getting sick in some instances, and then I rely on water, tea and honey, homeopathic treatments, and good ol' soup (seeking medical attention when the symptoms appear to be more severe or different from what is associated normally with a cold or flu virus).  

And I tell my family to buy stock in Kleenex Tissues.  :)

Definitions of Medical Conditions Listed 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

Everyday tasks that become challenges for Chronic Pain Warriors/those with invisible illness

In the field of mental health, we often talk about a client's ability to perform Activities of Daily Living (or ADLs, because we mental health types tend to talk in alphabet soup). These are activities related to hygiene, ability to cook and care for oneself, ability to complete chores, ability to function appropriately in social settings, ability to budget and manage finances, and just generally things that most adults are able to do for themselves.

There are times when adults aren't able to complete ADLs for themselves. Illness tends to be a big factor in this, whether it's physical or mental illness. Those who know my professional persona typically see someone that's fairly high energy, on-the-go, jumping from one task to the next, being the calm in the storm, great in a crisis type of person.  I'm the one who can strike up a conversation at the hair salon or in the grocery store with complete strangers.  It's not fake; I genuinely care about people and I genuinely enjoy what I do.  I enjoy what I do for a living, and I want to be the kind of person other people enjoy working with.

But I have to admit, it's an act. I don't fake being sick; I fake being well.  And yes, there are times when I can be considered someone who is unable to complete their ADLs.  There are many everyday tasks that can be difficult for individuals with chronic pain/invisible illness to complete.  Here are a few things that can be challenges:

Showering
Showering can be an interesting experience.  Many people with autoimmune disease/fibromyalgia/chronic pain experience a condition called Dysautonomia, which can cause exhaustion, tachycardia (fast heart beat), and the feeling that one might faint (or that one might actually faint).  While the heat from the shower can help ease some of the pain and relax muscles, the heat from showering can also cause other problems.

For someone like me, without a working internal thermostat, the heat can cause me to overheat quite easily.  Conversely, a cooler shower can also cause problems because the cooler water can trigger my Reynaud's phenomenon.

It's not uncommon for me to sit in the tub of the shower to bathe while the shower is running, or to take baths and use the handheld shower-head to wash my hair.  But there are days when bathing in the morning just does me in for the day.

Cooking
I love to cook, and I'm a pretty good one.  There's nothing quite as exciting as getting new recipes or walking through the produce section of a Whole Foods or a farmer's market during the summer months and seeing all of the great produce.  I can come up with fantastic recipes off the top of my head, and I love cooking with fresh herbs from my garden.

But I had to learn awhile ago that I had to make a choice.  After working all day, I don't have the energy to cook meals.  Some days, I barely have energy to heat something up in the microwave. Sometimes I just hurt too much to stand any longer.

This is where it becomes a trade-off. I'm fortunate in that my husband is willing to do much of the cooking and I try to help with finding easy and health recipes that can make leftovers. I still get to cook at times, but it's usually relegated to weekends and I usually throw something together for the crock pot.  I have to be honest, though.  If it weren't for him, ensuring that I ate regularly would be a problem.

Cleaning
Flat out, I pay someone to come clean regularly. I learned a long time ago that if my priority was being able to work that meant two things when it came to cleaning: 1) I wasn't going to be able to work full time and clean my house regularly and 2) paying someone else to clean is a necessary expense for my health.

Now, housecleaning happens every other week, and so we still have to do things like dishes and laundry and general day-to-day cleaning, and that can still be a challenge.  I've had to be okay with shortcuts on some things.  Again, my husband has had to take on more than his fair share of chores. And I've had to learn to ask for help...which I'm still working on.

Paying Bills
This is where brain fog can really cause problems.  It's so easy to simply forget to pay a bill unless there's some sort of system in place.  For me, I actually put which bills to pay when on my calendar on my computer and my banking is all online.  (The issues with my hands have become worse over the last few months and typing is infinitely easier for me than writing checks.)  But I admit, there are times when due dates slip by.

Part of self-care means taking care of these activities. There are some aids to help with showering and cleaning, but it can also mean sometimes those of us dealing with Chronic Pain/Invisible Illness need to reach out and ask for assistance. It's hard to admit that one has trouble with tasks that a "normal person" takes for granted, particularly when we're talking about a disability that's invisible.

To friends and supporters of someone dealing with Chronic Pain/Invisible Illness, be there. Be willing to listen and support. Don't judge. Don't make jokes about these sorts of things. Be honored if they ask you for help and support, because that means they trust you.

To the Chronic Pain Warriors/Individuals with Invisible Illness, let your supporters help you. Be gentle with yourself. And do what you need to do to take care of yourself, even if it means having to put other things on that "to do" list aside.


Definitions of medical conditions listed in my medical chart