The Search for Pain Relief

Today has been a long, and frustrating day. First the new rheumy cancelled my appointment because of the weather. I know my GP doesn’t want to treat my pain, and I have held on and pushed through knowing I would be seeing the rheumy. So, back to the GP for help till I can see the rheumy. His first response was to schedule me with a different rheumy in April. I counter with a request for pain clinic, waiting to see if my insurance will cover it. His next offer was Tramadol which makes me ill interacting with my Prozac. These calls started at 8:30am and the Tramadol offer came at 4:30pm. I sit back in the recliner and start searching for other pain clinics around and thinking about my life. I have RA, no one doubts I have RA. For Doc’s that like numbers, mine leave no doubt I am in pain. For those that watch the way I walk and move, there is no doubt I am in pain. Yet, Doctor after Doctor treat me as if Advil should make me well, and if not I must be a drug seeker. I tell them over and over, I will sign anything, I will take drug tests, I will pick them up 2 at a time, I will jump through any hoop you design just make the pain tolerable. At 5:30 the GP office calls again and he is going to call me in 30 Vicodin that will need to last me till April. I was so relieved to know that I have something to dampen down the pain when it is at its worst. This isn’t going to improve the quality of my life, it is no where near adequate pain relief. It will however keep me from the brink where the pain is so bad that death is actually a preferable option.

This is where I have been today. Searching for pain doctors did not help my frame of mind either. I found a pain doctor that is a reasonable distance from me and started searching for his research, papers, etc. What I found really upset me. This is the evaluation tool for determining if a chronic pain patient is high risk for abusing pain pills. A score of 3 is high risk. I am working on breaking the list down and discussing each part, but for now, how does your search for pain relief reflect on this tool?

1. Focus on opioids

• Not interested in non opioid modalities

• Not interested in workup of pain or referral for workup

• Physician feels that patient is focused on opioids

• Demanding opioids

• Angry if denied opioids

• Asking for higher doses of opioids

• Asking for opioids on the first visit

• Asking for and/or insisting for specific opioids

• Claim allergies to all/most non opioid analgesics

2. Opioid overuse

• Self dose escalations and asking for more

• ER visits for opioids

• Asking for opioids on weekends and after hours

• Stolen/lost prescriptions and asking for more

• Taking opioids from nonphysician sources

• Excuses to obtain additional opioids

• Hospitalization for unexplained exacerbation of the chronic pain

3. Other drug use

• Prior alcohol abuse or illicit drug abuse

• current use or asking for benzodiazepine/soma

• current use or asking for barbiturates

• current use or asking for stimulants

4. Low-functional status

• getting financial assistance(non-retirement) from the State

• getting disability benefits

• Applying for or planning to apply for disability benefits

• On BWC, but not working and getting financial assistance from BWC

5. Etiology of pain unclear

• History, physical exam and investigations unclear in explaining pain symptoms

• Nonphysiological pain patterns like diffuse pain, whole body hurting, pain radiating up or down the spine

• Inconsistent pain patterns

• Investigations normal

• Investigations don’t explain or correlate with the symptoms

• Physician feels that the etiology of pain is unclear

6. Exaggeration of pain ( again really??????)

• Exaggeration of pain symptoms

• Positive Waddell signs

• Unexplained moaning and groaning with slight movement

• Unexplained difficulty with movement

• Exaggerated facial expressions during physical exam

• Unexplained extreme limitation in the range of motion of the spine or joint

• Cannot clearly justify use of cane or walker or wheelchair

• Unexplained worsening of Pain after physical exam

• Cannot complete physical exam because of pain which cannot be justified

• More than expected tenderness in the area/areas of pain

• Pain out of proportion to the findings on investigations

• Physician feels that patient is exaggerating pain

http://www.painphysicianjournal.com/2004/july/2004;7;333-338.pdf

Good Morning RA

You awaken at 7am and before you even open your eyes you are aware of which joints are achy and which joints hurt.   You wiggle your toes and rotate your ankles, open and close your hand and circle your wrist.   You try to move the covers and realize your arms are too weak and painful.   Slowly you bend your knees moaning and stopping several times before they are high enough to displace the covers.   It takes a full 2 minutes to roll over in bed enough to get the covers off your arms.  Heart rate is up; tears are brimming, time to rest.  You finish getting the covers off and sitting up on the side of the bed, it is now 7:30a.m...  As you sit on the edge of the bed resting you start your range of motion exercises to help the stiffness that feels like every joint is wrapped in an entire roll of duct tape.  7:45am you slide off the edge of the bed and stand up.  As the weight hits you feet, ankles, knees and hips they all start screaming like someone has put them in a vise.  Once you get your balance you take your first step of the day and moan.  12 steps to the bathroom take 3 minutes.   You fall on the raised toilet seat and give a big sigh of relief.   You are thankful that you remembered to load the freedom wand with toilet paper last night.  Now you are so tired and dreading standing back up so you sit there and wait.    When you get up (and close the lid) it takes a bit to get your hand to operate the flushing mechanism.   8:15am time to brush your teeth.  It takes 2 hands to get the toothbrush out of the cup, and get toothpaste on it with a tube squeezer.   You sit back down and using 2 hands to hold the brush, brush your teeth.  Stand, rinse your mouth and take a deep breath.  Its 22 steps to the front door.  Your feet feel like you are walking on marbles.  Your ankles feel like the worst sprain ever.  Your knees are wrapped in duct tape full of rocks and clamped in a vise.  You made it to the door in 5 minutes let the dog out and collapse in the recliner next to the door and fall asleep at 8:40am.  9:30 let the dog back in and hobble to the kitchen for breakfast.  Takes 2 hands to pick up the empty bowl and place it in the seat of a chair.  Two hands to lift and pour the cereal and milk.   Now you have to pick the bowl up with your wrists instead of your hands and move it up to the table.  You place your left palm on the bowl of the spoon to make the handle rise off the table and maneuver your right hand to hold the spoon without grasping it.  Each bite is a combination of raising the spoon as far as possible then moving your head down to get it.  Hobble back to the kitchen and put the bowl in the sink.  11am take your meds, hobble back to bed.

You were awake 4 hours and still haven’t brushed your hair or changed clothes.  This is a moderate day, not the best and not the worst.  Think about what you do in the first 4 hours of your day. 

Communicating Rheumatoid Arthritis Pain

Pain is one way our bodies tell us when something is wrong. The last few years has seen many changes in hospital policies moving towards better treatment of pain. Pain is now considered the “fifth vital sign” with Temp, heart rate, respirations, and blood pressure. Many States, the veterans administration and Joint Commission have made policy stating; "that pain be assessed and treated promptly, effectively, and for as long as pain persists." . As patients we have a right to be treated with respect even when it relates to our chronic pain. So why do so many suffer with inadequate pain management?

2011 Consumer Guide to Pain Medication & Treatment states Medication-related problems would rank fifth among the leading causes of death in the United States if they were considered a disease. Although opioid pain medications can be a useful tool in the treatment of pain, the misuse of opioid (narcotic) pain medications has become a national issue. The abuse of prescription opioid pain medications now ranks second—only behind marijuana - as the nation’s most prevalent illegal drug problem. It is a federal crime to take a controlled substance that has not been prescribed for oneself. (pg11)

New laws are being put in place so doctors are again afraid to prescribe pain medications,  pharmacies have extra paperwork to dispense pain medications, and patients are left to suffer.  Yet even law enforcement state that it is important to fight addiction but not at the expense of not treating pain.  So, how can we improve our pain control?

Communication

Everyone on the team has to speak the same language.  If you don’t understand each other misunderstanding will lead to ineffective treatment.

Measurements

A scale is generally used to rate pain.  The problem is that it is very subjective.  Marie Lamond Levesque, a fellow RA Warrior posted to the discussion board a wonderful Pain Scale.  I recommend printing it and putting it in you folder so you and the doctor are understanding exactly what your pain level is and how it affects your life.

Goals

Is the goal to be pain free?  Is that realistic with your disease progression?  Maybe just being able to cook dinner.  The goal will be very individual  but should be about improved quality of life.  If you are a zombie it isn’t healthy and if you hurt to bad to move it isn’t healthy.  Strive for the middle.  Write down your goal so you and your doctor are both clear on where you want to go.

Documentation

Keep some type of log or journal and take it with you to the doctor.  Just a notebook works or there are several online tracking tools and even some u can print and put in a binder.  The ACAP has several tools to help with documentation.  I really like their Fibro log even for RA.

Improving Early Diagnosis in Autoimmune Arthritis

Kelly at RaWarrior put this topic up for a blog carnival.  I really wanted to participate in the Carnival but this topic left me scratching my head.  How do you diagnosis something that is poorly understood, variable, and unpredicatble?
I woke up one morning disabled.  The doctors kept asking me if I hadn’t had symptoms before and I kept telling them NO.  Now it is 20months later and I have learned a lot.  My answer now would be YES.  Over at least 5 years  I had what I called my “wandering pain”.  Pretty much something hurt everyday, but not the same thing more than 1-2 days in a row.  I wrote them off as getting older, slept wrong,  pulled something, etc.  A few times  I did see my PCP for more severe pain, or longer lasting.  She always ran lots of tests but we always had more questions then answers.  I now know she was looking for RA  then but I didn’t know.  ESR and CRP was always elevated, sometimes a little, and sometimes a lot.  I didn’t show RF  and my pains were NEVER  symmetrical.  Eventually, no matter how bad the pain was  I wouldn’t go to the doctor.  As a nurse the worst thing I could imagine was being labeled a drug seeker/attention seeker.  At one point I worked for 6 weeks with a broken hip because to me it was just another wandering pain.
In listening to other peoples stories, I know that I am not alone.  Frequently “the wandering pain” visits those of us that end up diagnosed with Autoimmune Arthritis.  Often times symmetrical is not how it starts yet that is a defining characterisitic of rheumatoid arthritis.  Blood tests aren’t conclusive, x-rays don’t show til late, MRI’s are too expensive and limited by most insurance companies and PAIN  is a four letter word.

Link to the blog carnival:  http://rawarrior.com/rheumatology-blog-carnival-2-how-can-diagnosis-be-improved/

My Welcome to RA

April 29, 2009 2am I awake in pain worse then my most horrible nightmare. I tried to get out of bed and realized my arm would not even lift the thin sheet i had on, I was terrified. The neighbors finally heard my screams and call 911. This was my welcome to RA. For those that like numbers my rf factor was 619.5, sed rate 155, ccp >250. I was lucky and got SSDI within 6 months on my first try so money became less of an issue but I had no insurance, so finances stayed tight. My first rheumatologist was great, she had RA herself including the ulnar deviated fingers. She explained things to me so I could understand them, not that I am stupid but in shock from the drastic change in my life. MTX is not an option cause of a non-alchohllic fatty liver with elevated liver enzymes. So, we tried the sulfasazide (spelling error). It did nothing. At this point I ran out of savings and had to be referred to the clinic. Continued on 80mg prednisone daily and not able to do simple tasks. Multiple trips to the clinic, and frustrated, like wrestling a polar bear to get information out of these people. No change in treatment. I am a +tb converter, but no history of tb. They wont give me biologicals. Go January 20th to see a different (4th) rheumotologist, wish me luck he is willing to try something besides the prednisone.
I have not gotten any adaptive devices, simply if I cant do it, it doesnt get done. This site has made me want to fight again. But fight differently, I might not be able to walk the mall but I'll get a wheelchair and go enjoy the mall. I will get and use ever device to make me independent again. I might not be able to do alot of things, but my life isn't over