Pain and Other Things

Historical look at Standards of Care since the 1980's: In the early 1980's, the government realized that the standard of care could no longer be applied by a local or regional standard. Patient management needed to be standardized throughout the USA. Each person had the right to expect the same treatment in Podunk, Hinterland as in the premier institutions throughout the country i.e Cleveland Clinic, Clevland Ohio USA.

The government created the Agency on Healthcare Policies and Research. AHCPR. The AHCPR determined the first three projects it would tackle were pain, incontinence, and diabetes. That agency continued to work on problem's until 1995 when the agency was renamed the Agency for Healthcare Research and Quality. How the agency evolved is not relevant to the discussion, but I like to understand perspective of how we got to where we are.

The pain research began in 1985. It was published in 1989. A cardinal finding that even to this day is not well known is that the " worst judge of a patients pain are doctors and nurses. The best assessment of a patient's pain is their own self report." To accomplish this tools were developed and promulgated. While the tools are excellent the application is not.

The visual analog scale (VAS) i.e the smiley faces was developed for children. Research showed that children could very correctly communicate their pain level. Interestingly, the VAS is not successful with adults. With adults the numeric or adjective scale is more successful at communicating pain level. But for the numeric scale to work more learning had to be done on the part of the docs and nurses. Then the docs and nurses had to teach the patients. This is where the system failed. Instead of requiring that the learning occur, the powers to be defaulted to what was easy the visual analog scale. This is evidenced by the fairly universal use of smiley faces throughout the USA being used with adults.

I did a research project in 1992 in an attempt to improve recovery and post-op pain management in the facility I worked in, hence, I read all of what the AHCPR produced in their original practice guideline. The info in the next few posts are still current today.

The above post was on use of the numeric scale for assessing pain. The patient was conscious and verbal. To keep things in sequence this next post is about non-verbal clues of assessing pain. It was written awhile ago in response to a family member that had a mentally challenged relative. All that I have included are the same observations I would make with recovery patients in PACU/Recovery, in the OR or Special Procedures where I was the nurse doing IV conscious sedation. The concepts are universal.

In the home setting, I have many times trained my homecare families in what I'm presenting to you. Please, realize you have to apply the information to the setting you are in. So, when I say do this or that it may mean ask the nurse

Non-verbal cues to pain

First Look: head to toe observation. If the patient is resting quietly breathing without effort, it's a good clue they are comfortable. That first observation is only seconds.

Then proceed with taking a closer look at each body part. Once used to this process you will know how to change it as needed

Head>> facial grimace, eye twitching, lip biting, repetitive head turning, arching of neck and head, nasal flaring, sounds>>grunting/crying/wimpering/ whistling/other noises. Place your hand below the nostrils to check air flow from the nose. Nose cleaning is probably the least thought of thing in all of care. Open mouth--look at gums and tongue. Unusual redness, swelling, white coating may be Thrush. Thrush can be incredibly painful.

Chest>>>breathing>>are respirations fast/slow. Is there an unusual rise and fall of the chest. Nasal flaring can apply to problems breathing or to pain. Sounds can apply to problems of breathing or pain

Abdomen>>pawing at the belly, arching in any direction. This one you wouldn't likely feel comfortable doing/looking at, but it's here for completeness. With the belly exposed is their visible movement of the abdomen. Does the belly appeared distended. Is the belly hard--all over or just in one area.

Extremities>>repetitive movement, twitching, pawing. spasms.

Skin: if pain is uncontrolled the body will react with a "fright or flight" response, skin will be cool to cold and damp/moist. Gooseflesh may even be observed. Color will be pale.

Blood pressure changes: Knowing the patients usual range is the basic need to know. This can be a tuffy because the origin of the pain will suggest what pressure to expect. Generally, uncontrolled pain will cause the pressure to go up (fright or flight response). But if the pain is associated with trauma, the pressure may be low b/c of bleeding. If the patient is on blood pressure meds this sign may be of limited value because the meds are blocking the fright or flight response.

Heart rate: Knowing the patients usual range is the basic need to know. Generally, uncontrolled pain will cause a fast heart rate (fright or flight response) If the patient is on medicine that is blocking a fast rate change, then this sign is of limited value. Low heart rate can have many origins outside this scope. But if the known heart rate is routinely above 60, and is now lower than 60 with other signs of trouble. Activate EMS.

Then I would check for a bowel impaction and bladder distention. May sound nuts, but in an altered mental status the head hitting/grimacing that is easily attributable in your SIl's case to bone mets to the skull, could be b/c she's impacted.

In summary for the nonverbal patient: Do the assessment and vital signs, assure no impaction or bladder distention, determine that this is not a new problem which requires a doc call, or pain med needs to be given. I'd get the pain med on board and let it start working it's magic. Comfort measures.

The key is once the decision is made to give pain medicine don't delay getting it on board.

Thery're many theories about pain. The first that was introduced in the 80's was simple because not allot was known. Over time I still used it. The Pain Cycle. When Pain occurs>>>> we become anxious and the area has a flood of signals>>>increasing pain>>>>increased anxiety and area flooded with signals>>>>increasing pain>>>>>> and increased flood of signals to area.

I tried to make a drawing, but it didn't work. I chose the following image because it has the scissors. Where the scissors are is analogous to a pain scale of 1-3. As pain increases think of travelling around the circle to the opposite side. That would be analogous to 7-9. When you effectively use the pain scale to drive how you take your pain medicine, then you keep the pain under control. You don't allow it to get out of control. Does this work?

Throughout the USA standardization is now routine in documenting pain. The following list was developed in the 70's it was referred to as Qualifying History of Patient Complaint. In medicine complaint or ' complains of ' has a very specific definition. It defines the problem. In medicine, it's referred to as Chief Complaint (CC). From the chief complaint an algorithm of appropriate questions can be derived. For example, you say you have chest pain, I have a list of specific questions to define a quick identification

What I will next do is a form with definitions on how to use the identifiers. It will be a generic form. When done I will cut & paste to another box so it's clean i.e disconnected from verbiage. How I suggest the form be used is to do it weekly and placed in a ring binder. Then a next section with the pain & medication log. This becomes very useful for tracking pain. Incredibly useful when pain levels change. Docs respond very well to this type of documentation.

Chief complaint(what's hurting/what's wrong, has to be something physical related to the patient))?

Location of pain?

Radiation of pain( does the pain go to another area from the original pain site)?

Quality(stabbing, throbbing, squessing, burning, electric, dull, achy, itchy, crawly, sometimes the best question to get a patient to describe the feeling of the pain is to ask "if you had to give me the pain what would you do?")?

Intensity(pain scale based on a 0-10. Can break it up i.e. At rest--3/10, with walking 7/10, bending 10/10 Breaking it up is truly the best approach.)?

Quantity( how often in the day, constant or intermittent)?

Aggravation(what makes it worse?)

Alleviation( what makes it better? What have you done i.e. pain med, massage, if alternative, some folks hesitate to disclose, but it means a whole lot to disclose. Unless it's marijuana and you are in a non marijuana state. See below post.)?

Scenario of first symptoms( When did first symptoms appear, what were you doing, Were they're any symptoms in the recent past that you can now associate with the present problem. Were they're any symptoms in the distant past that you now can associate with the present problem.)?

Checking on an old friend, came across this post. Consistant.

Sep 13, 2014 11:18AM - edited Sep 13, 2014 11:20AM by sas-schatzi

Kay so happy it was helpful. Back in the late 70's and early 80's, in the Ems community, we started just using a 1-10 scale. Zero -no pain, 5 moderate pain, 10 worst ever. It was amazing without science behind it how well we were able to communicate the degree of pain. I continued with it as years went on. Totally bought into the resaerch by AHCPR once I found it, because I'd seen that it already worked.

Started a job in Nov 1992 at a surgery center, I observed completely inadequate pain control AND poor communication with the docs. I put together a program for the nurses. At the end of the program, I could see by their eyes, I didn't make a dent. I said to them "I can see that you are hesitant regarding this information, please, share with me why". There were looks back and forth. Then one nurse said "I know when my patient is in pain" The others chimed in supporting her statement. My response was "Just to restate that the AHCPR group made up of 800 people from around the country, that searched and researched, all that could be brought together to develop these guidelines AND that the first premise of the research states nurses and docs were the worst judges of a patients pain"." You believe you know what your patients pain level is?" Again, there was the exchanged looks. The group spokesperson said "Yes". Again they all chimed in-----OH MY! That was 1993. To this day, 2014, I've seen too few nurses aggressively control pain.

That's why it is important for you/us to understand this---to protect ourselves

Leslie, First Thanks. I agree strides towards pain control are way beyond where they were years ago, but not far enough yet. A dear friend on these boards that I hope will come and explain her DGS's scenario. His pain was so bad that he went to the extreme of amputation. But science/ medicine could offer no other solution. He's happy now.

What I hope here is that there will be many posts with stories and management outcomes. We learn so much from each other.

Corky, you are the exact reason that the original initiative of the AHCPR was written(1985-1990). Pain management was NOT being done. You are the exact reason, I included the history of pain management and the response of the nurses in one of the posts. "I know my patients pain" Chit. Not sure how long I will pontificate, but it's Friday and I have wine.

AHCPR defined how to evaluate and how to direct care. A whole care industry developed i.e Pain Management. That was inclusive of docs, nurses, Physical therapists, Occupational Therapists, rehabilitation, and drugs. Sounds good. Was good if you were in the right system.

Now we fast forward to 2016. Then narcotic addiction to prescribed meds has terribly complicated matters. Controls on narcotics and scheduled drugs have lead to an unpresented state data bases on drug prescriptions to avoid doc shopping and prescription abuse. In the fall out of this, is you and me. Anyone trying to legally get help for pain is in the system. I will link to a thread that further defines that problem.

https://community.breastcancer.org/forum/110/topics/830496?page=1#idx_25

I actually started this thread b/c of Mags who has fibromyalgia too. My goal was to bring pain into one thread. Examining current research re: fibromyalgia is important to cancer patients b/c if it's present when treatment starts it's going to be worsened. If it isn't present there's a chance that the AI's can cause the domino effect of pain. Been there, but the research denied that they're was a connection in 2009. Since then, the out roar of AI patients musculoskeletal pain, the connection is accepted. Plus the problems of bone depletion by many of the drug traetments.

But I haven't gone to the "mattresses"(research) to see what is going on recently with fibromyalgia, but I promised Mags.

This will be a long response because the research takes time and fortitude.

I hope others with knowledge will pop in and share.

Pain in our cancer community is common. Control varied. Doctor denial getting worse.

Oh chit, , Looked for post--------------gone. Forgot I was working on a reserved post box.

Let's take each part of your question and address it specifically.

"Great presentation and tools".-------------------thanks

" I have fibromyalgia but the burning pain isn't usually under control. So I look for ways to reduce the pain from a 6 to a 3." This statement is your issue. i.e. Chief complaint: Uncontrolled pain________(area), Dx fibromyalgia, ICDM10 code_______. other ICDM codes that apply .

Should have been addressed by Rheumy and Neuro docs. If they each had you coming back for visits after diagnosis and treatment plan with follow up to see if the treatment plan was working without adjustment of the plan, they were bleeding you and the system.

"My rheumatologist no longer sees fibromyalgia patients due to the Affordable Care Act. She said that there are so many new patients needing treatment for auto-immune disorders that cuts had to be made somewhere". Rheumatologists are one of the most costly and rare specialties. How they are most effectively used is to diagnose and develop a treatment plan. Once the patient is stabilized on a treatment plan then a once a year contact is reasonable with the PCP maintaining the treatment plan. As you identified pain control hasn't been accomplished by the the treatment plan. Should have been? Your not in a stable place. Your Rheumy cutting you loose was wrong. They had an option Pain mgt consultation. To say she no longer sees fibro patients b/c of the Affordable Care Act has nothing to do with care. I am suspect of this doc. Is they're another Rheumy?

Haven't brought myself up to date yet on 2016 treatment of fibro, but again that was the goal b/c of Mags. It will get done.

"The neurologists in this area will diagnose but not treat fibromyalgia patients"---------AFC, again it get's down too, MEDICAL specialty rarity. This specialty once consulted should develop the treatment plan that the PCP caries out. Same as Rheumy, a once a year check in appointment should be enough unless a changing condition is present. If a treatment plan is working and no knew symptoms than a return visit can be delayed

"So now it falls to my internist, who is my PCP. We are presently looking at changing meds and incorporating gentle exercise. Because of my age she no longer recommends NSAIDS because they can damage the kidneys. I can't take aspirin and Tylenol doesn't help. She will not prescribe any narcotics, not even as a rescue medicine. Uncontrolled pain has a grip on my life".

You and your PCP shouldn't have to be working out anything. The treatment plan should have been done by the Rheumy and Neurologist. Apparently, your PCP has been abused in the sense she hasn't got treatment plans from specialists. Both of you have a reason to complain to insurance carriers. She has a reason to take it to the medical council, medical society governing body of the county.

Ask the PCP for a Pain Mgt referral. But without a treatment plan from Rheumy and Neuro it will be a bit more problematic. They could have made the whole scenario much easier. But a good pain doc may turn this around for you.

Corky, I had polio in 1952 as a 26 month old (twin). Life long pain, stiffness that needs constant work. always pushing. Not complaining. But recognize degrees of pain. Once had a conversation with a workmate complaining of knee pain. After questioning, she described never having pain before. I stood in wonder looking at her. Repeated the question several times b/c she was the antithesis of what I had lived my whole life. Zero.......................Just needed to share.........That's not us, but we can gather stuff that helps

They're is this nationwide crackdown on controlled pain meds. Ask your doc to consider Tramadol(generic/ Ultram(trade). It's a good drug for pain. But oddly I have found many including me that describe the first few doses as strange. Then when I had no other options I tried it again. Same scenario, but it worked great for pain relief. Lower pain scale is nirvana.

Corky, What were your original D totals, then subsequent. I will bring some research from another thread on D. Dr. Heaney Professor Emeritus from Crieghton University is a great resource on D. Interesting dosing on Levothyroxine and Cytomel (T3). Would love to hear the full story of how you came to it.

AH-HAH, I just came to the part about the D diagnosis by that very bright Neuro doc. That is exactly why I asked about your D. I too had bone pain that was unremitting. Put off to post polio and fibro. Went to a new Endocrine doc in 2007. MY D2D3 measurement was <4--with this statement next to it. "To low to measure". The unremitting bone pain improved. It didn't return until I went on the AI's.

Your story about the UTI is too typical. Old Doc Clarke was teaching one time and I never forgot this pearl, "If you listen to your patient they will tell you what's wrong."

I see a function of this thread is looking at us a whole being. Each body part and all the functions work together.

Well glad you got the referral. The catch phrase this decade is Mindfulness. Basically, it's meditation. I wrote a post somewhere about producing endorphins. Rather than rewriting, I will be mindfull and try to think where it's posted.

Please, get your ring binder going with the weekly general form and then the 2nd pain documentation form. Where it says 'note' to the side. write body parts that hurt. If you have to use separate lines b/c one body part hurts worse than do it.

Fibro is still discriminated against. Why? Because it's predominantly in woman. Even woman docs discriminate.

With Codiene it is a good drug. It's the metabolite of Morphine. Two cautionairies 1.most complained of s.e. is abdominal pain after taking. Take with food. 2. constipating. Get thee to the Constipation thread and think about what you can do to mitigate this s.e.

Will send PM phone number so we can do the Genelex thing.