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