"Med Seeking Behavior" and chronic pain (Or how can I prove to you that my pain is real when I have an Invisible Illness?)

We were watching the show "Night Shift" the other evening, and there was a scene where a patient comes in with obvious pain.  It appears she had kidney stones (to which I can attest is extremely painful), and the inexperienced medical professional on her case diagnosed kidney stones based on the tests, including blood in her urine.  Turns out the patient was a frequent flier to the ER and nicked her finger so she could put blood in her urine, and her chart documented a long history of med seeking behavior, specifically trying to get narcotic pain medications.

Now, med seeking behavior is a major problem for the heath care system today.  I won't deny that. And while the "typical" drug seekers shown on the media and in television shows usually show addicts in a fairly dramatic fashion, the truth is that health care sees med seeking behavior in a variety of ways, including individuals complaining of pain caused by invisible illnesses. And those individuals may truly experience the levels of pain that they're reporting--or they may not.  But it does make it harder for those of us who are truly in pain and need certain medications for treatment to receive the treatment we need.

So while society tells us "But you don't look sick" and many don't believe us, health care can share the same opinion.  And I can't blame health care for being cynical.  Prescription drug abuse is on the rise, and the FDA has changed their rules about prescribing Hydrocodone as a way to partially address this issue.  There are reports on the Office of Inspector General website of doctors being arrested for inappropriately prescribing Schedule II drugs and fraudulently billing for them.  Add in the news of increases of death due to accidental overdose of prescription pain medications, and it's understandable that medical professionals are cautious.

But there's very much a flip side to the story.  Those changes have led chronic pain warriors who rely on those medications to function to have great difficulty in getting the meds.  The cynicism of health care professionals to those with invisible illnesses who rely on those medications has led to people not getting what they need for treatment.  And this isn't the entire health care profession--there are many out there who acknowledge that there is a proper place for narcotic pain medication and work with patients on appropriate pain management.  

I've had experiences that run the gamut in the 20+ years of living with chronic pain.  The first time I was ever given a Narcotic pain med, I was about 20 years old at the time, and I was in the ER with pleurisy.  For those who aren't familiar with the condition, it felt like an elephant that was sitting on my chest and trying to crack my ribs with every breath, every attempt at talking, or every attempt at moving just a little.  It was extremely painful.  (Funny story: to say that I'm somewhat sensitive to pain medication is an understatement.  Shortly after the administration of the drug, I had the sudden urge to sing Disney tunes.  I must have said this aloud, because the nurse turned to my mom, who was with me, and said "Perhaps she only needs half of the pill.")

My primary care at the time was fairly wiling to work with the Fibromyalgia and Myofascial Pain Complex, but he also was quick to prescribe the pain pill I tolerated so well with pleurisy as a PRN ("to take as needed") for me to deal with pain.  This wasn't something I had requested, but it was something that worked quickly to deal with severe pain and would allow me to get back in track in maintaining my health.  

Over the years, it became a staple in my care.  For doctors looking at my history, they saw how frequently the PRN pain meds would expire before I even needed them (which shows how often I utilized them), and I've always been pretty vocal that I prefer other ways of dealing with my pain spikes if I can.  I can honestly say I've never had one of my (many) primary care physicians treat me as if I were med-seeking.

I can't say the same for some of the specialists I've seen.  And I really can't say the same for trips to the ER.  I once had a very nice and sympathetic ER nurse tell me to be careful sharing that I was diagnosed with Fibromyalgia with ER staff, because many of them will view me as doing nothing but med seeking.  

I will admit; I did go to the ER med seeking once.  (Well, actually, it was a total of 5 times in a week.)  I had kidney stones.  At that point, I would have stood on my head and whistled "Dixie" if they could take away my pain.  (And, in normal circumstances, I can't do either.) Generally, though, if I'm at the ER for pain, it's because I'm concerned there is something really wrong going on in my body.

I have some recommendations regarding this:

• Develop a strong rapport with your primary care doctor, and be open to other forms of treatment besides Narcotics.  Some medical groups have acknowledged the vast problem of chronic pain, and have started pain management practices that focus on a variety of ways to help alleviate pain.
• Educate yourself.  Work on finding what works for you to control pain that may not include the pain meds.  There are reasons I don't like Narcotic pain meds. They don't completely take away the pain and leave me feeling fatigued and sluggish for a few days after (on top of my already present fatigue), but the digestive issues?  Don't get me started on those.  And frankly, overuse of them can lead to dependency on the medication and potentially damage to organs.  That's why I use it as a last resort.  Is there a place for them?  Absolutely.  Do I still have my PRN prescription in the medicine cabinet?  Absolutely.  Do I still opt for time in the pool and acupuncture before I reach for them, when I can?  Absolutely.  
• If you have to seek out emergency care for pain, be open and honest.  Despite the recommendation from that ER nurse, I don't hide my diagnoses.  And yes, I have been treated poorly in the ER at times.  (And then I've filed complaints and requested that the staff receive additional training on chronic pain and invisible illnesses.)  But if you hide something, it'll appear you're hiding something, and staff are going to jump to the worst conclusions.  
• And if you seek out emergency care for pain, and they determine that your pain would be better responsive to an injected anti-inflammatory rather than a narcotic, don't argue with them (unless you know you have a contraindication for the anti-inflammatory).  Arguing with them isn't going to help your case and WILL make you look like you're med seeking.  After all, the purpose here is to help manage your pain, not to get you higher than a kite while doing so.  

Definitions of 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.

What can set a flare in motion? (Or why I HATE Daylight Savings Time.)

Flares are times at which the symptoms of Autoimmune Disease/Chronic Pain conditions are at their most acute and severe.  Flares can be short term (few days) or can last long term. They can happen for unpredictable reasons, but a Chronic Pain Warrior learns that are certain things that can set flares in motion for them (and it can differ from person to person.)

For me, there are things that I know can start a flare.  Stress, emotional overexertion, physical overexertion, changes to my sleep habits, medication changes, allergies, if I'm fighting off an illness (or sick with an illness such as a cold or the flu), or a multitude of other factors.  There are many that I've learned to avoid or to mitigate their impact, but there is one change in my environment that seems to get me every time.

Time changes.  Daylight savings time changes are probably my least two favorite days of the year, consistently, because I'll feel the impact of those changes for at least a week. Unfortunately, I can't avoid the flare, but I've learned a few tricks to mitigate it:

• Avoid trigger foods like sugar, caffeine, and alcohol.  I tend to avoid those foods anyway, but I seem to crave sugar and caffeine when I'm flaring.  (They provide quick energy, but I pay for it later.)  
• Try to drink plenty of water and stay hydrated.
• Eat regular meals.  (Don't skip meals! This can cause even more problems.  As a tip, many grocery stores are now offering prepackaged meals that are easy to throw in the microwave or oven and don't require too much thought, planning, or work.  Keeping a few of these around while flaring can allow you to focus on recovery while still getting a nutritional meal.)
• Rest when needed.  (Sleeping too much can also be a problem because it'll throw off sleep schedules, but allow yourself to rest.)
• Don't over-schedule/over-commit yourself.  Take a step back and focus on your self-care.
• Are there adjunctive therapies that help you?  For me, those include the use of Essential Oils, massage, acupuncture/cupping, and meditation.
• Gentle yoga (keyword gentle) and stretching can be helpful.  
• Do you have an activity that you enjoy that doesn't require a lot of output? Maybe it's reading a good novel, watching a funny movie, or sitting outside enjoying the sunshine. Spend time doing something that you find enjoyable and relaxing.

Personal Note:  I've found great Essential Oils through a company called Ravenscroft Escentials (link here).  Ginger and Charlie are amazing, extremely knowledgeable and helpful, and their "Fibro Rub" oil has helped me immensely.  

Definitions of medical conditions listed in my medical chart

Getting the Lupus/RA Diagnosis (or I KNEW something else was going on!)

About a year ago, I received the diagnoses of Lupus and Rheumatoid Arthritis.  It took awhile to get there, though.

I know I've mentioned in previous blog posts that my blood work didn't show anything wrong, but that's not entirely accurate.  At the time of my Fibromyalgia diagnosis, there was nothing of note in my blood work, but there have been some funky issues in my blood work over the recent years.  But there were no major red flags until my medical team started doing investigative work into my history and started ordering the "non-standard" blood tests.  So, again, I found myself going from doctor to doctor, having so much blood taken I started to joke that they should just put a port in, over the course of about 2 years.  

The appointment where I finally received the diagnoses?  It took ten minutes with a new Rheumatologist who looked at my file and said "I'm adding the diagnosis of 'Unspecified Autoimmune Disease' to your file, but you have Lupus and RA.  And you have to start on this medication today."

On one hand, I didn't want more diagnoses.  I certainly didn't want additional medications. But on the other, I was right.  Even though the symptoms for Fibromyalgia, Lupus, and RA are similar experiences in the body, I knew there was something that was dangerous in my body.  Fibromyalgia makes life miserable as hell, but it doesn't cause damage to organs and joints.  Lupus and RA do. 

Lupus is a condition that can affect almost any part of the body, especially the skin, blood, joints, kidneys, heart, and brain.  Without proper treatment and management, Lupus can be fatal.  Rheumatoid Arthritis is a progressive autoimmune condition that mainly affects the joints, but also muscle weakness and swelling.  The damage to the joints can be debilitating. Disease modifying drugs, such as Plaquenil, can be a great first line defense for these conditions, but other common treatments include chemotherapy drugs.  

I don't share this information because I want pity or people to feel sorry for me.  I strongly believe that everyone has their own challenges to overcome, and these just happen to be mine.  I believe that I've been dealt these cards because I am strong enough to handle it and the natural advocate in me can advocate for individuals with invisible illness and can educate about invisible illness.  This will be a lifelong battle for me.   

Definitions of medical conditions listed in my medical chart

Guilt (or Choosing between being what society sees and taking care of myself)

There are a lot of emotions that go along with having Chronic Pain/Invisible Illness, but a predominant one is the feeling of guilt.  And the messages we receive from friends, family, significant others, employers, and society help perpetuate those feelings of guilt.

I'm going to be speaking from my perspective, and I have to admit that I'm making myself vulnerable with this blog.

There tends to be this societal view of invisible illness as "it doesn't exist because I can't see it."  And when someone is dealing with invisible illness and is unable to participate in activities or unable to work or needs a disabled placard, the default attitude of society tends to be that that person is malingering.  This attitude can come from the general population, family, friends, and even the medical community.  

From day 1 when my journey to a diagnosis began, I encountered that attitude.  The doctors would say "All your blood work is normal, so there's nothing really wrong with you.  You just need to see a psychiatrist."  (Remember, this was more than 20 years ago when mental health and physical health were seen as separate systems, and those professionals that chose to work with the mental health side of the medical field were met with the same stigma as individuals with mental illness.  To this day, there continues to be a stigma associated with individuals with mental illness and those professionals who choose to work to help that population, but there is work to decrease the stigma.)  

Even after my diagnosis, doctors didn't believe me.  I was viewed as adverse to attending school and mentally ill.  As I became a young adult, I continued to encounter this attitude within the medical field, but I also encountered it with friends.  It wasn't uncommon for me to have a good day one day (and completely overdo it), and a bad day where I wasn't able to do anything the next.  "But you were fine yesterday," is a statement I've heard many a time.  

No.  I wasn't "fine" yesterday.  And the nature of these conditions means that they are unpredictable.  While there is a lot within my control (what I eat, my sleep hygiene, taking my medication and supplements, etc), there is a lot not within my control.  Something as simple as weather changes or fighting off an illness can throw me into a flare.  Stress is a huge factor in managing these conditions--the higher my stress level is, the more challenges I'll have.

Unfortunately, the unpredictable nature of Autoimmune Disease/Chronic Pain means that there are times I have to cancel plans at the last minute with friends or call in sick to work. It means that there are days where I do very well and appear very "normal" while the next I'm not able to walk.  Or breathe.  Or I'm screaming in pain.  Or I collapse in the shower because of fatigue and overheating.  Few people get to see me on the days I'm struggling.  

The thing is that I want to spend time with friends.  If I make plans with someone, it's because I wanted to make those plans with them.  I want to work.  I don't call in just because I want to play hooky.  And when I have to cancel something or miss out on something, I feel guilty.  I hate letting people down.  

A number of years ago, I had made plans with a coworker/friend to do something on a day off, but when the day came, I woke up running a pretty good fever and feeling like I had been run over by a truck.  I was no where near safe to drive, and so with regrets, I called to cancel plans with this person.  

Her response?  "I wish you had let me know you didn't want to get together sooner.  I could have made plans with someone else."

I was frustrated that a supposed friend couldn't see how much I was struggling.  But I felt the hit of guilt that I had to cancel.  

I also hate asking for help, and I frequently have to rely on my husband.  There are times I feel like a burden to him.  I have to ask for a lot of help, but there are definitely times that I'm not able to contribute much.  I feel guilty because I feel like such a burden.  

I should add that I have amazing friends and an amazing husband, all who assure me regularly that I'm not a burden.  An example of the awesomeness of one of my friends is when I broke my foot.  She came over to visit and cleaned my kitchen for me.  (And she knew me well enough to move my crutches out of my reach before she started cleaning the kitchen.)  This is also the same friend who will check in with me when we're out to make sure I'm not pushing it to the point where I'm not safe to drive home.  I can let the mask down around her.

But the guilt comes in other forms.  Use a disabled placard to park in a disabled designated spot, but don't use anything to help you walk?  People look at you as if you don't really need the spot.  (Some will even make comments.)  The mind starts up with "am I taking this spot away from someone who needs it?" and "could I walk a little further today?"  The fact is that on the days where I can walk or that I'm feeling good, I don't use the placard.  So when I use it, it's because I need it.  And yet, I'll still question myself.  Similar things happen with using the disabled stall in public restrooms, where (logically, I know) what happens in there is no one's business.  But the feelings of guilt make me want to broadcast to the world that I needed the bar on the wall to help me back to standing.

So often, society views individuals with invisible illness as lazy.  Again, logically, I know I'm not lazy.  I have a photography business, I create jewelry, I write, I have a private practice, I'm working on a third masters, I work full time, and I still try to fit in more stuff.  And yet, I feel guilty for taking a nap when I have a day off because it may mean that I'm lazy.  The truth is that I'm doing what I need to do to care for myself, and even at that, I'll let guilt propel me to push myself even more, and then I pay for it later.

I'd like to offer some sage advice on how to deal with feelings of guilt, but I'm still working on that myself.  What I will say is that your health is your priority, and you need to care for yourself first and foremost.



Definitions of medical conditions listed in my medical chart

Chemical Sensitivity (Or what do you do when your shampoo makes you break out in hives?)

About four years ago, I began having allergic reactions to my shampoo.  And shortly thereafter, I noticed that I was breaking out in rashes with my face cleanser and make-up. Then there was the allergic reaction to my deodorant (which was highly uncomfortable), and I noticed that I seemed to have increased sensitivity to my body wash.  Even my clothes seemed to cause a sort of allergic reaction.  I'd used the same brand of products for about 15 years, and the brand reported themselves to be natural with ingredients that shouldn't cause these sorts of problems.

But sure enough, I was experiencing sensitivity to something within the products I had been using for years and found myself standing in the aisles of Target wondering what would work for me.  Well, I found myself wondering what would work, but also worried of what else may cause these reactions. (I'm glad to say that I was eventually successful in finding new skincare, shampoo, body wash, make-up, deodorant, laundry detergent, and cleaning products, but I'm also very aware that this could change at any time.)

I, like many other individuals dealing with an Autoimmune Condition, have developed Multiple Chemical Sensitivity (MCS).  WebMD has a great technical description of this condition, but here's a definition from my point of view:  Intolerance to a variety of chemicals that can lead to allergic reactions within the body.

I won't bore you with the list of chemicals I cannot tolerate, but fragrance can be a major trigger for someone with MCS.  Strong perfumes or colognes are problematic items for me, because it can actually trigger breathing difficulties and severe nausea.  I once had to share a computer wrist rest of someone who wore strong colognes, and found myself breaking out in hives on my wrist.  I can't walk down the detergent aisle at the store because of the strong perfumes.  I can't wear clothes that have been bleached, nor can I be around areas where bleach has been used for cleaning purposes.  

Like Fibromyalgia and Lupus (or other Autoimmune Conditions), there isn't a definitive list of what chemicals to which a person with MCS will react to, nor is there a list of potential reactions, so what I may have sensitivities to others with MCS may not (or vice versa).  

It's easier to control the environmental factors within the home.  For instance, in our household, we've found a line of house cleaning products that both work well and don't lead me to have a negative reaction.  We're very clear with the individual who cleans our house for us that it's necessary for her to use those cleaners, as well as why.  

In our home life, we have run into some challenges with MCS. My husband and I are both artists and many creative endeavors require chemicals that aren't so great.  I refuse to give up those creative outlets, and so I've had to figure out workarounds where I can.  The big challenges come while being out in the world.  

Ever have the experience of stepping into an elevator with someone who's wearing very strong perfume?  For a "normal" person, it's an uncomfortable experience, but for someone with MCS, it can feel like being choked.  So you can imagine being stuck on a plane or working in an office where strong fragrances exist.  

So, if you're sensitive to chemicals, what are some ways to deal?

• If you're working outside of the home, advocate for a fragrance-free workplace. You might be surprised how many of your coworkers will thank you for it. Chemical Sensitivity is also recognized as as a disability by the Americans with Disabilities Act.  (Learn your rights under the ADA.)
• Read labels.  Learn about what products you're using on and in your body.  Learn about the products you use to clean your home.  Not all "natural" products are natural (labeling can be misleading), so do some research.
• Remember if you have an Autoimmune Condition, you're more likely to develop additional Autoimmune Conditions and/or Chemical Sensitivity.  Talk to you medical team and other trusted professionals on how best to address these issues for you.

Definitions of medical conditions listed in my medical chart

Working with Medical Professionals (or You may have the M.D., doctor, but since it's my body, I'll make the final decisions.)

A doctor spends a lot of time in school, learning.  After they get through the classroom part, there's internship and residency, and depending on which specialty they choose, more time spent in residency and fellowship. There's a lot that goes into learning how to treat the various ailments and traumas that can happen to a human body and no one person can learn absolutely everything there is about medicine. 

This isn't to discount the amount of effort, time, and knowledge it takes to get those two letters behind one's name.  I have a huge amount of respect for those individuals who dedicate their lives to helping others, whether it's in medicine, social work, or a related profession.  But with any profession, there are always a few individuals who go into it for the wrong reasons (read: money).  And with medicine, there always seems to be a few docs out there who seem to suffer from "God Complexes" where they are unwilling to concede that they, in fact, may not know everything.  

When one is diagnosed with a chronic illness, it can become a full time job to coordinate doctor's appointments and medical procedures.  Fitting in a trip to the pharmacy before they close seems to happen more often than grabbing a quick cup of coffee with a friend.  

The receptionists at my primary doctor's office know me well.  They see me walk in the door and grab my paperwork without asking my name.  They ask about my husband and dog. They, like my close friends and family, have seen me "without my mask".  There's really no reason to pretend to be happy or healthy when you're going to the doctor's office.

My current primary care is awesome.  She respects my desire to try to treat my conditions as holistically as possible and understands that she is part of a medical team that I've chosen to help me, but that I make the final decisions on any sorts of medication and treatment.  I don't say that "I make the final decisions" to be a difficult patient; I say it because I have to live with the impact of those decisions.  

The average person--without any major illnesses--goes to the doctor when they get an acute illness like a cold or the flu, or maybe annually for a physically.  For an individual with chronic illness, there are frequent visits to the doctor's office (or doctors' offices, depending on the condition).  There may also be multiple medications for an individual to take.  And with those medications come side effects.  And some of these side effects aren't the most pleasant things to experience. 

I have been through multiple medications since my initial diagnosis of Fibromyalgia 22 years ago, and along with those medications, I've had to deal with side effects.  Some have been relatively minor, like dry mouth.  Others, such as the weight gain I mention in a previous post, haven't been so minor.  And still others, like the ulcer, have a potential to be very serious.

There are medications I prefer to not take unless it's absolutely necessary.  Like many people with chronic pain, I hold a "PRN" (or to take as needed) prescription for narcotic pain medications, but I avoid taking them unless I can't breathe, can't walk, or am in absolute screaming pain.  I think there's this idea that pain medication takes away pain, and in my experience, I still feel the pain.  I just don't care as much about it.  

But when I decide it's time to take a pain pill, I've committed myself to feeling rebound pain (and yes, that IS as fun as it's sounds), a pretty good headache, digestive challenges for the next couple of days, and just generally feeling like crud for a few days after taking it.

So, I've educated myself about the potential medications and treatment.  I ask lots of questions.  I've learned that while the internet can be a great tool with lots of information, WebMD can convince anyone they're dying.  I turn to peers on social media and online support groups for information and support.  I read journal articles.  

And while my primary care is awesome, amazing, and completely supportive of my participation in holistic therapies, I occasionally have to see specialists that aren't so awesome.

I've gone through multiple Rheumatologists.  For some reason, doctors in this specialty and I just don't seem to get along.  (They want to tell me what to do without questioning it and I like to question things.)  If I'm going to undergo a particular treatment, I need to know what the potential benefits/risks are to the treatment before I'll agree to it.  If it's adding an additional medication, I need to ensure that the new medication won't cause additional side effects that are highly problematic for me.  If it's a new medication, I also want to ensure that there aren't any contraindications with the medications I'm already taking.

I have had doctors tell me that all I needed was to "sleep and exercise more".  (At that point, if I could have done either, I wouldn't have had to see the new Rheumatologist.)  I have had doctors tell me that they didn't like treating people with Fibromyalgia.  (I was actually seeing this particular doctor for the recently added diagnoses of Lupus and RA).  And, as is my right as a patient, I fired both of those doctors from my medical team.

Here are some steps to be an active participant in your medical care:

• Educate Yourself.  Seek out information about your diagnosis and symptoms. Look up information about potential treatments for those diagnoses, and pay attention to the side effects in the fine print.  Find which doctors in your area/insurance plan are rated well, in terms of knowledge and patient care.  
• Ask Questions.  Ask questions of your doctor.  If they're not receptive to questions, they're likely not the appropriate doctor for you.  (And as a note, if you're seeing someone new or if you've received a new diagnosis, write any questions down prior to the appointment and bring your list with you.)
• Be clear about what outcomes you want.  Realistically, what you ultimately may want may not be attainable.  But what outcomes can you live with?  What's possible?  What can be done to get you from where you are closer to where you want to be?  
• Be clear about what side effects/outcomes are intolerable for you.  If increased fatigue is a problem for you, you likely don't want to be on a medication that will make you very tired.  If weight gain is a no-go, then you may want to avoid medications where weight gain is a side effect.
• Don't be afraid to request a change of provider.  Just like not all people get along with each other, not all doctors are meant to treat all patients.  Sometimes it's just a conflict of personality types, and it's within your rights to request a change of provider through your insurance carrier.  
• Don't be afraid to say no.  Ultimately, it's your body and therefore your decision on whether you move forward with certain treatment.  If you're not comfortable with it, it's your right to decline that particular treatment.

For more information, check out the Joint Commission on "Speaking Up".

Definitions of medical conditions listed in my chart.