August 12, 2011

Pain Relief - Reality for Chronic Pain Sufferers

Kelly (aka RA Warrior) blogs about every aspect of life as a Rheumatoid Arthritis patient.  You can read about her experiences (and knowledge gained about) dealing with family, responsibilities, doctors, diagnoses, treatments, even the media and government, at her blog.  While Kelly's posts are focused on RA, we all know that these conditions overlap and we experience many of the same things with other diagnoses.

Recently, Kelly posted on the vital topic of pain relief.  Then, being Kelly and all, she took it a step farther and invited her readers to post on the topic as well for a blog carnival.  And, well, here I am:)

I wanted to focus on what I consider to be a fundamental issue for chronic pain sufferers, and one that (in my experience) isn't examined directly often enough.

As Kelly mentioned in her post, there is a lot of conversation on the issue of pain relief efforts by doctors / caregivers.  Patients, especially those in chronic pain (who are often mistakenly labeled as drug-seeking) and men, frequently find their complaints of ongoing pain are dismissed.  They get responses like "it should get better with this treatment" (excuse me?  "Better"?  What does that even mean?!), or "try using heat/ice/Tylenol/AnyOtherPacifyingMechanism" as if we haven't already tried these usual remedies before 'bothering' the doctor with the complaint.  It is VERY true that many (if not most) patients are struggling to have their pain recognized and treated at a basic level.

Unfortunately, the problem doesn't stop when pain is (finally) dealt with by a doctor.  Treatments (drugs, holistic remedies, lifestyle changes) usually aren't enough for chronic pain sufferers.  So then the discussion evolves to the problem of getting SUFFICIENT pain relief treatments.  But, is this realistic?

Image found here.

I'm all about hope - hope for understanding, acceptance, societal change, support, treatment, relief, advancements, and cures.  But hope has a caveat.  If the basis for hope is not realistic, hope may lead to huge disappointment.  To have hope and benefit from all the good things it offers, you have to have a realistic understanding of where you're starting out (this is all part of my "pragmatic optimist" theory).  Hope grounded in reality leads to actionable ideas; if we understand where we really are today we can do things to make tomorrow what we hope it will be.

So what is our current reality when it comes to chronic pain:
*We have chronic pain - which means we have ongoing pain over a long period of time.  The pain may come and go throughout the day but return day after day, or it might be pain that never truly goes away.
*We've tried traditional and OTC relief methods - OTC medications (acetaminophen, ibuprofen, aspirin), applying ice or heat.
*We've usually tried alternative relief methods too - massage, rubs, Grandma's never-fail tea & herb drink, hot baths, dietary changes, supplements.

What can doctors do:
*Prescribe medications specifically to relieve pain - codeine, morphine, fentanyl (these turn off pain receptors).
*Prescribe medications to reduce pain by reducing problems (like inflammation) - NSAIDs, steroids, muscle relaxers (these work to reduce the problem causing pain like inflammation or muscles pressing on nerves).
*Order professional therapies - occupational (how to relieve/prevent problems with how you move), physical (how to relieve pain & problems through exercises), orthopedic/osteopathic (adjusting your body for structural irritants (such as chiropractic medicine)).

Now for the reality check -
What are some limitations of these solutions:
*Drug interactions
*Side effects
*Long-term effects of drugs (such as long-term liver damage, ocular effects, kidney damage)
*Expense (high prescription costs and many therapy programs require a copay for every visit 2-3 times per week)
*Time commitments (it's hard to work therapy routines into busy or unpredictable schedules)
*Limited success - There is only so much these things can do.  The drugs that address things causing the pain are a great way to go but don't usually relieve all pain.  Therapies tend to reduce intensity but often don't eliminate the pain and can even cause other (lesser, usually temporary) ones.  The drugs most likely to really eradicate the pain are also the most dangerous - they don't treat the problem so the issue can continue to cause damage, they often involve mental side effects (everything from mood swings to delusions), distribution is usually tightly controlled, and many can cause addictions.

Unfortunately, this means a patient with chronic pain may be expecting too much from modern medicine & our doctors.  When we begin a new treatment (pharmaceutical or otherwise), we should discuss with our practitioner what are the REALISTIC benefits we can expect to experience.  HOW MUCH pain relief should we look for, and how long will it take to realize?  I'm concerned that as patients we are setting ourselves up for failure by looking for complete relief when it just isn't realistic at this time.

Of course, I believe we should HOPE for full relief.  We, as people, DESERVE this relief, and we should demand scientists keep working for it.  We should still have hope, now that we know exactly what it would take to be real!

In the meantime,
There are a few things we can do to make the most of the reality in which we live:
*Prioritize...and make sure our doctors share our priorities - medications come with side effects and contraindications.  But that doesn't mean we have no choices!  A patient should decide what he/she can & can't live with, and work with their doctor to align their medicines accordingly.  If the steroid you'd need to relief the symptom most intrusive to you interacts with something else you take, tell your doctor that this is more important.  They may be able to take you off the other medicine, find out if there's an alternative drug that won't interact with the steroid, or suggest other options to allow you to take the steroid which may make you happier. 
The same is true for side effects from drugs - if you can't stand a side effect, maybe the original symptom is worth living with.  However, remember that the reality simply is you can't have it all.  It's rare you can treat and resolve a symptom completely without other side effects, so have a reality sit-down with yourself and decide which you can live with.
*Take responsibility - let's say your doctor ordered a therapy, but you can't afford (in terms of time and/or money) to go 2 or 3 times a week for 8 weeks.  Find a way to go a few times, and consider if you can learn the therapies to do on your own at home.  This is usually an option with physical therapies (depending on the safety of doing the exercises on your own), though less so with ones that involve someone else 'forcing' your body (like in an orthopedic setting).  If you're considering this, be honest with your doctor and discuss if this is something you can try safely.
*Don't get mad, get creative - If a treatment really isn't cutting it, think in different directions.  What about combining different types of treatments; many drugs interact, but what about some medication, lifestyle adjustment, and an alternative therapy?  Since they each approach the problem in a different way, it's more likely you'll experience comprehensive relief!  Just remember nutritional treatments can interact with prescription drugs, so consult your doctor to be safe.  And don't forget seeking spiritual support!  But we can address that in another post:)

Image found here.

And if that still isn't enough?  Use your voice.  Tell the government and science community "hey, the status quo isn't cutting it here".  Blog, join an organization, write letters, make phone calls, spread community awareness, reach out to drug companies.  Find other people who agree with you and work together.  It can become your calling in life, or be something you throw your weight behind when you have some free time.  But you will be empowered, and since you can't run a marathon without a first step, your action is pivotal!


  1. Great post !!! I remember a doctor who told me that with Sjogren I should begin to accept to live with pain and get used to it. She never saw me again.
    (Jazzcat-sorry I have an issue with the computer, I can't log in).

  2. Love this post. And voting thumbs up to Jazzcat's comment too!

    Thanks for all of your hard work, Jenny, to lay out these points so clearly.

  3. Wonderful post! I am also for having realistic expectations. I loved your point about realizing that there are costs and benefits to all treatments. Sometimes the original complaint is better than the treatment; sometimes you have to deal with the side effects of the treatment because its better then the original complaint. For me, changing my diet has helped some. It hasn't cured me by any means (I'm in a rough place right now) but it has helped and it's a cost I'm willing to endure for the benefit.


  4. This is great and you're so right talking about realistic expectations.

    I'm trying to work on that!

  5. I totally agree with you on setting priorities about your life. Unfortunately my doctors waited so long to really treat my pain that I am afraid of being in pain so being without vicodin is out of the question. I was basically forced into this priority due to society's attempt at controlling who gets pain medication,how much and when. The pain was the main reason I became disabled from work...catch 22 if I took the meds I couldn't drive or take care of my patients if I did not take it I would be in bed trying to sleep away the pain. Now when I need a refill I hope and pray that the doctor will refill's one thing to have pain controlling your life but to have a doctor (another human being) having that control is scary.


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