Sunday, August 21, 2011

The ABC's of RA Pain Management: Let The Games Begin!

(Picture Credit AFB)

Recently RA Warrior had some wonderful blogs featured on her Rheum Blog Carnival: Pain Relief in Rheumatology.  I read through them with vigor and came away amazed at the variety of bloggers and their vast array of pain experiences. Sadly though I also realized that little if anything has changed in regards to pain management and ra.  As you all know by now, I have had ra for 13 years and after reading these wonderful blog posts I now fully realize that we as patients need to understand the game of ra pain management.

And here's why.  My daughter is a twenty year old college student.  Recently she came home with a book entitled: NICE GIRLS DON'T GET THE CORNER OFFICE - 101 Unconscious Mistakes Women Make That Sabotage Their Careers.  For some unidentifiable reason (at first) my blood pressure went up immediately upon reading the book's title. Actually I was furious. I am 54 and have my BS in Business Management so throughout my career I have engaged in classes, seminars and the like on Women in Management. What surprised and fiercely disappointed me is that nothing has really changed. Not a single thing in this arena has changed in the past 34 years. The book has some interesting points and I am not here to review or critique the book but rather to reflect on why in the past 34 years little has changed in the area of how women are viewed in corporate America is similar to why nothing has changed in the area of ra pain management.

It didn't take me long to make the leap.  If we are still viewed in corporate America as having to make the changes to play the game well (obviously still primarily a boys game) then it wasn't much of a grasp for me to realize that we need to learn to play the game of ra pain management. And yes it is a game!  

We just haven't been taught the rules of this game and we have not been given the tools or strategies to navigate through the ra pain management field.  So first, let me lay out what I perceive as the game of ra pain management. And for simplicities sake, I am focusing only on narcotic pain medications here as almost all rheumatologists are willing to prescribe anti-inflammatories, pregnisone and ultram.

First you must acknowledge that this is a game and a game with very specific rules. And that is why we need to recognize it as such…there are rules out there impacting this ra pain management game and ones that are quite clearly written and some that are more camouflaged.  But, we need to know them all in the hopes of getting the best ra pain management we possible can obtain.

The game works something like this:

Rule #1:
Depending on your state (yes your state, as each state has rules mandating the dispensing of narcotic pain medications), you will need to know your individual state laws and rules that may hamper your doctor in the prescribing of said pain medications.  You will want to know this information for two reasons: 1) if your doctor tells you they don't prescribe narcotic pain medication, you can then ask if it is because of the laws of your state or is this a personal belief. 2) Depending on your rheumatologist answer you will want to either stay with him/her (in my opinion if they answer it is because of the law) or maybe leave them (in the case it is a personal decision on their part). If you are not in the US, you will need to understand your specific country's laws that govern narcotic pain prescriptions.

Rule #2:
You must come up with an ra pain management plan with your rheumatologist BEFORE you are in severe pain or a severe flare.  This should be part of your overall ra treatment plan. But PLEASE make sure you specifically discuss this early on in your treatment and BEFORE you are in a bad flare. There are many reasons you want to do this: 1) when we are in pain we may come off as being emotional or desperate (I fully understand why we are this way) but unfortunately emotional does not play well with many doctors 2) if you discuss the steps your doctor will take under this ra pain management plan you will know ahead of time what to expect, how to contact the doctor including after hours and on weekends, when you should receive an answer and what narcotic pain medications your doctor will be prescribing and for how long. 3) You may just be able to stay employed because you won't be missing so much time from work due to ra pain*.

Rule #3:
As great as some of the newer DMRADS are for ra, they are by no means a cure all for the pain of ra.  I am not a researcher (wish I was) nor a doctor to understand why some of these medications do help with the pain for some patients but don't dent it for others at all.  Nor can I explain why we as ra patients often have no swelling but still horrible pain levels. And even more frustrating is why so many doctors don't recognize the above two rules I have just mentioned (hint, hint doctors - start taking notes please).  You must understand the sub rules of Rule #3 and understand it well if you are one of these patients that receive little or no pain management from DMRADS, pregnisone, anti-inflammatory use or Ultram.  And even if you are one of the lucky ones that do receive moderate pain relief through a combination of the aforementioned medications, believe me, you will one day experience a flare that may require stronger pain medications. And given the implications of rule #2, you need to have your ra pain management program worked out in detail for your own sanity.

Rule #4:
Chronic pain kills!  It kills not just our livelihood, spirit, family well being, financial well being but it also can bring about a dark depression directly associated in my humble opinion to the lack of ra pain management. I know of two people that recently took their lives due to the severe pain of poorly treated chronic pain and one blogger I am still waiting to post in the hopes that she too didn't take her own life from the pain of her disease(s). So that we don't become a dog chasing our own tail, realize that if you are starting off with chronic pain from the onset of your ra diagnoses, you may carry this with you for the rest of your life. Now I did say MAY. I do not want to paint a hopeless picture here. In fact this is exactly what motivated me and  worked up my blood pressure and thus the creation of this post. I want you all armed with the rules so you know how to get what it is you need when you need it….ra pain relief! I do not want one more person that I know to ever have to get to that point in their life. And I firmly believe that because doctors do not treat ra pain aggressively enough, patients are left to linger in often excruciating pain which then makes them emotional which then makes the doctors to say they are depressed or over reacting to their pain. This continual hopelessness from lack of pain treatment leads to desperation which leads to…well…this has got to stop. Doctors need to treat pain with not just respect but with the proper medication treatment to curtail the pain or at the very least make it manageable.

Rule #5:
Come armed with all you know. So, you agree that you need to come up with a pain management plan with your doctor BEFORE you need it. You go in with pen in hand, binder ready  only to find your doctor spewing off the following: meditation, acupuncture, use of cold/hot, massage, yoga, exercise, PT, OT, TENS unit etc. etc.  If you are not already familiar with some of these "pain management" techniques then you need to study up and go in prepared. And please study up on the difference between addiction and dependance regarding narcotic pain medications. Beat your doctor to the punchline. Let him/her know you have carefully done your research, you are not just an educated patient but one that is empowered with your knowledge. Be ready to discuss with your doctor your willingness to try these other steps/techniques but under no circumstances should you let your doctor off the hook for narcotic pain medications as an option and this very important discussion about an overall pain management game plan. This is why you need to have this discussion with your doctor early on and BEFORE you need it. I am not saying that some of these other techniques do not help manage pain to some extent but in my personal experience they should be integrated on a daily basis for chronic low level pain.  The big guns should be pulled out for the bad flare or patients with long standing ra that have not gained remission from the current arsenal of medications and/or other pain management techniques out there.

Rule #6:
Passing the ball. Yes, this is often done. Pass the ball to another specialist. In this case you will hear your rheumatologist refer to a "pain management specialist". NOW HEAR THIS fellow raers.  A lot of pain management specialist do not and WILL NOT treat patients with ra. What! I hear you exclaim. From personal experience I can attest to this catch 22 hell. My ra doctor did not want to prescribe me narcotic pain medications  even though I was on every conceivable DMRAD, pregnisone, and anti-inflammatory known to man and referred me to a pain management specialist. I wound up going to one (took me several weeks to get in) only to be told he didn't treat patients with ra. According to them, it is the responsibility of the rheumatologist to deal with the ra pain. I called a total of 7 other pain management specialists only to be told the same thing. They will not treat patients with ra. Round and round we go! I would call a few pain management specialists ahead of time in your area and inquire if they treat patients with ra. If they do, then great! This can be an option for you if your doctor can't or won't write narcotic pain medication prescriptions.  And for those of you who are the unfortunate ones and live in an area where pain management specialists will not treat ra, you can tell your rheumatologists this from the get go during your pain management plan discussion. Oh, won't he/she be surprised that you have done some homework. But I will tell you, you will be glad you did. Look how much time and pain you will have saved yourself by doing all of this ahead of the needed time….a terrible flare or horrible pain level.

Rule #7:
It's not in your head! RA pain is not a figment of our imagination and don't you ever let any doctor tell you it is.  Your pain levels are real and they can be treated with the right doctor willing to take the task on. If your rheumatologist even begins to go down this road, I would immediately seek out another ra doctor. Just be sure you get a copy of all your medical records ahead of time and read his/her notes carefully to make sure he/she did not taint your medical records with personal views written in the margins. I can not tell you how many patients have been denied SSDI or pain management treatment due to comments in margins. Know your records and know them well! It may take awhile to find that wonderful rheumatologist but there are many of them out there. It is just the journey to find one that may take some time.  Start the search early and continue on until you find the right match for you which includes a pain management game plan that you both agree on.

Rule #8:
The rule of camouflage. Often in this game, there are many things that will impede the doctor/patient relationship. I call these impediments, camouflage. We know they are there but we can't pinpoint what or why they happen. One study about The Effect of The Doctors Sex on The Doctor/Patient Relationship points one camouflage out quite clearly…

"Four propositions are put forward in this article.  Firstly, that women doctors and medical students are different from their male counterparts in certain respects. These differences seem to reflect differences in male and female socialization. Secondly,that the qualities which women doctors tend to have, and which women in general tend to have, correspond with the qualities patients desire in a good doctor. Thirdly, that female patients are more likely than male patients to prefer women doctors, and in effect recognize the link between the first and second propositions. Male patients, although they seek similar characteristics in their doctor, are less likely to associate these characteristics with a woman. Fourthly, the outcome of doctor-patient exchanges is significantly different in a number of respects according to whether the doctor is a man or a woman. Communication is easier,more time is given, drugs are less frequently dispensed and women patients are treated more seriously if the doctor is a woman."

Another camouflage is our societal view of narcotics in general. How often we have heard the confusion over addiction vs. dependence for someone with chronic pain and yet how often have we heard our very own doctors mention that we will become addicted to narcotic pain medications and this is why they will not write a prescription. It is sad that many doctors have yet to understand or even bother to research the difference.

And add all this to the confusion of what comes first, chronic pain or depression. I could write a book on that one!

My point is that you need to be aware that often their are underlying or subtle (camouflaged) issues going on between a doctor/patient that we can not put our finger on but we know are there and impeding us from getting what we need. In this case pain management that works.

Rule #9:
This is a lifetime game. RA is not curable at this time. We will always have ra and we will always be under the care of a doctor for this chronic condition for the rest of our lives. Treat it as a lifetime game. Get to know the rules of this game, understand that you are in this for the long haul and that as part of this long journey you want as much pain free time as you can get. Don't be willing to give up everything you do, love, or want to ra and be willing to fight to keep these things. Yes, it is true that we may have to modify things at times (heck in my case all the time) but this does not mean you should have to give up basic things like dressing yourself, combing your hair, keeping employed, etc. etc.  Often these things can only be obtained with correct pain management. Plan to revisit your pain management game plan often and know your options ahead of time. I want what is best and more importantly humane for us. We should not have to suffer like I have seen so many suffer over the past 13 years. We need to hold our doctors and the medical community accountable for proper treatment. I am not asking you to be an activist (although that would be wonderful if you so choose) but do partake in developing your pain management game plan. Know the rules that govern it and learn to get to home base quickly rather then being struck out and having to play inning after inning.
                                                                            (Photo: Think Stock)

Things You Should Be Discussing With Your RA Doctor or My Home Run Game Plan For Pain Management:
Corticosteriods (steroids) including both pill and injections
And of course Narcotic Pain Medication(s)
Physical Therapy
Occupational Therapy
Use of cold/hot
TENS unit 
Possible Dietary Changes including: anti-inflammatory diet, gluten free, dairy free, sugar free, etc. etc. 
Possible Addition of vitamins/herbs

* Further reading on how to stay employed with ra on abcsofra.blogspot

Heigh-Ho, Heigh-Ho, It's off to work we go...Part 1


Unknown said...

You are amazing! I just read this to my husband and I would truly like to print it out and send it to every one of my doctors who has made me feel like a drug-seeking hypochondriac for wanting to take something stronger than ultram or anti-inflammatories.

Living in constant pain is unbearable. I am alive today partly because I overcome guilt due to narcotic misconceptions once or twice a day and take a little yellow pill. The little yellow pill, which is supposedly so evil, gives me a few hours of relief from the unrelenting pain all over my body. I experience no "high"--- unless you consider being able to function a high. (I consider it a right, quite frankly)

The support of wonderful people like YOU, also, has done so much to help me make it through the worst of times. Nobody "gets it" like fellow chronic pain sufferers.

Thank you for this post, your knowledge, but most of all your heart. You are the best!!!

Deb aka AbcsOfra said...

Beth...bless your heart. I am so sorry that your doctors have made you feel this way. It is wrong and criminal in my opinion. Grouping true chronic pain sufferers together with drug seeking addicts is an injustice that has been prevalent for far too long and needs to cease. Personally I am tired of the status quo for ra treatment in many aspects but this is the hot topic of late on my mind. Don't you EVER let ANYONE make you feel less because you want the most normal life you can obtain. And if taking a narcotic pain medication brings you somewhat of a normal life then good for you that you have found a combo of medications that are working for now.

Jan said...

Thank you, thank you.

Deb aka AbcsOfra said...

Jan...this is why I started this blog. If I can help even just one person out there on their journey, I have accomplished my goal.

Terry said...

Awesome post! I wished I would have seen something like this when I was first diagnosed. I learned mainly by trial and error, had a horrible rheumatologist at first. Thanks for this amazing post, I know that people will benefit from this.

Deb aka AbcsOfra said...

Tharr...thank you for the encouragement. Be careful, I may just go on blogging forever :-) with all of this encouragement. I had a rough time getting proper pain management during my early years of ra and really believe that had I had some help with the pain part of my ra, I might have been able to stay employed longer. And we all know what loosing a job means financially.

Thrive With RA said...

Hi Deb,

Excellent post -- very helpful and informative! We do need to be our own advocate, don't we?

Thank you!

Belinda said...

Wonderful article. I think that pain is definitely undertreated, and I think that physicians are going to extremes and just deciding not to prescribe any scheduled drugs for pain to avoid any legal problems. The problem is, they are also avoiding their responsibilities. I think physicians are going overboard when they make a blanket policy to not prescribe narcotics, even when the situation warrants.

The physicians who have been prosecuted in connection with narcotic prescriptions were prosecuted because they WERE abusing their ability to write those prescriptions. Many physicians were basically trafficking narcotics. Some were trading narcotic prescriptions for sexual favors, and one physician I know, was even involved in offering narcotic prescriptions to a patient if the patient would lodge a formal complaint against his colleague. I think everyone involved; the patient and the physician need to remember that along with "rights" and priviledges, we also have responsibilities. The physician has the responsibility to do his job, ameliorate pain and suffering at the very least. The patient has the responsibility to be honest with their health care providers, and to adhere to the plan of care.

Pain is not simple. There are differences between chronic pain and acute pain. Those with Rheumatoid Autoimmune Disease may have acute pain, chronic pain or both. Often, once a patient is diagnosed with RAD, they are mistakenly classified as having chronic pain because the DISEASE is chronic. I make the distinction between acute and chronic pain, not that either is more deserving of relief than the other, but because the treatment of acute pain is different than the treatment of chronic pain. Additionally, perhaps “chronic” pain, could be avoided by treating the acute pain. In that case, the physician is negligent in his responsibilities. Do they even understand the risky position they are putting themselves in? Think about it. What price would you put on your happiness, your ability to earn a living, and the price tag for your relationships? That will be the amount requested by the plaintiff’s attorney in the courtroom.
The physicians took an oath to "do no harm" however, everything that I have read regarding pain management states that unrelieved acute pain leads to chronic pain. There are big differences between acute and chronic pain. I think that RA patients, or at the very least myself, have ACUTE pain.
"Chronic pain persists despite the fact that the injury has healed. Pain signals remain active in the nervous system for weeks, months, or years.
Physical effects include tense muscles, limited mobility, a lack of energy, and changes in appetite. Emotional effects include depression, anger, anxiety, and fear of re-injury. Such a fear might hinder a person’s ability to return to normal work or leisure activities."
"Long-term recruitment of pain fibers leads to permanent changes in the nervous system that can contribute to chronic pain.11 Persistent NMDA-receptor activation (from persistent pain) stimulates nerve growth and regeneration and remodeling in the spinal cord that can lead to allodynia, a state in which stimuli that do not normally cause pain, such as light touch, are perceived as painful."
"Unrelieved acute pain...might lead to chronic pain". I think THAT is what the physicians need to be wary of, and I think attorneys need to hone their medical knowledge. This will be the next wave of litigation, and rightfully so. The physician is actually CAUSING harm when they decide to not treat acute pain. They are putting every patient that they refuse treatment for acute pain at risk for a life time plagued not only with pain, but also all of the illnesses that go along with chronic pain.

Deb aka AbcsOfra said...

Belinda...I so agree that it IS the physicians responsibility to treat acute pain. I feel they do harm when they don't as they let the patient suffer. But I also do believe that chronic pain must be treated as well. Some ra patients suffer with what I like to call acute chronic pain. That is a pain level that is acute or unbearable but also chronic. Thank you for such a thought provoking comment.

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