Pain: What About Patient Centered Care?

This week I had a hand operation that involved the rearrangement of bones and tendons. In case you have not read much about orthopedic surgery it often involves power tools, and may cause you to feel pain after the procedure is over and the nerve block wears off.

In the past I have accepted the usual prescriptions for percocet and Tylenol 3, but this time I refused them since they make me sick to my stomach. Nothing like surgery and throwing up to make you feel really bad.

The plan for another type of pain relief did not work very well at all. I was given a prescription for a different type of pain pill and told to take 1 or 2 every 3 hours. How patient friendly is that? How could you manage to sleep?

perfect pain killer?

If these pills were so ineffective that they would only help with the pain for three hours that just doesn't seem good enough. What kind of patient friendly dosage schedule means you take pills every 3 hours? I phoned the surgeon about this and he did not even understand the point I was trying to make.

Let's just imagine we were talking to a Doctor like Victor Montori, who has sympathy for what is now known as the burden of disease. I wonder if he might think of a better way?

Burden of disease is crushing

I was about to delete this blog post until I ran it by a few friends. 

This is what Lucy thought: 

"I don't know what it is with pain medication but I think they think we are all addicts. When I had my knee replaced I had to fight for more pain medication in the hospital and then when I went home they gave me barely enough to last two weeks. Thank goodness my doctor agreed to give me more. Another patient at Physio had hardly been given anything by his hospital and couldn't do his therapy. It was really awful - he didn't have a GP to go to for help. 

I always meant to talk to my surgeon about this and I will in future as I think it is something they need to look at."

And Joanne agreed to an extent:

"I agree with you on the pain pills and with Lucy's comments. The drugs they give us going out of the hospital are completely inadequate both in dosage and in # of pills. I got too little after my hip surgery. Only enough for 3-5 days. I don't know the equivalence but after the hip experience, I asked my GP for a prescription in advance of hand surgery and had plenty of pills. Even that didn't get rid of the pain entirely. 

The fact that my pills had acetaminophen in them was also an issue because it would have taken me above my daily limit. If I have any more surgeries, I will request drugs in advance from my GP. From 3 surgeries, it doesn't seem to me that the hospitals will bend on this issue. I hope your pain begins to subside soon."

Whatever happened to patient centered care? Is it any wonder that patients don't always follow instructions?!

When you obviously have pain, beyond a shadow of a doubt, you can't even get adequate pain relief. That adds even more weight to the previous post about the difficulty of getting pain relief with chronic pain.

Aging and Pain Pills: Julie's Viewpoint

Pain medication is a big issue for those with chronic disease. Julie a US member of our support group has some complaints, based on her experience:

"Someone who doesn't know what real pain is has made the rules.  They are more worried about drug addicts than patients in pain.  It is difficult to find a doctor who will prescribe pain pills and they keep close tabs on the number of pills a person can have.

They were trying to stop the "pill mills" where controlled drugs were being sold to addicts and they closed down several "pill mills" in Houston.   BUT - at what cost to people who really need pain relief?

Now, it is very difficult to get pain medication.  If a person goes to a Pain Clinic, they make a
the person fill out pages of forms - some forcing a promise that they will absolutely not get pain medication from any other doctor or place.  There is also a page telling people to be very careful with their pain medication because if a person would accidentally lose or somehow destroy the pills (by dropping them on the floor or in water etc.)  they will NOT be replaced.

A drawback of the Pain Clinic model is that patients have an extra appointment every month for testing and to get another prescription for more medication.  A Big Hassle! and even harder on the elderly and the poor.

My Internist prescribes the lowest number of pills (Hydrocodone) at the lowest dose for me.  He doesn't really want to do that and he said he only has 2 patients where he will write a controlled drug prescription.  He said he only does it for me because I am a long-time patient, he knows that I suffer from RA and that I am really in pain. I am hopeful that he will keep doing that as I don't want the hassle of having to go to a pain clinic every month, now that I am 80.

Pets can help people deal with pain

The insurance companies keep tabs on what and when and how much a person can receive and they won't let any controlled medication be filled early - it can be filled 3 days before a person has their last pill. (So if you need pain pills forget that vacation)  This is what my pharmacy told me.  Other pharmacies might have different policies.  I do know my doctor will not re-fill a prescription before 30 or 90 days are up depending on the medication.  The prescription has to be on a green prescription paper with all of the doctors drug numbers on it and it has to be taken to the pharmacy in person and handed to the pharmacist.  It can not be telephoned in or re-filled any other way.

Many of the Pain Clinics will make people try other methods to ease their pain before they will prescribe medication.  This situation really isn't fair to sick people. Obviously it will help some people to cope with their pain using less medication over time, but we all know that "One size fits all" is a fantasy"

It also makes you wonder why insurance companies have taken on an enforcer role in the war on drugs. I get the feeling that they feel more able to take care of my health than my doctor can and I feel that is wrong.

Most of these are going back to the drugstore - wrong strength, now off the market and inferior generic

Arthritis Affects More Than Your Body

In the post about "Changing Shoes" Dr. Backman showed how that image came to symbolize what we've lost with inflammatory arthritis.

That led me to think of writing a post about the psychosocial aspects of living with Rheumatoid Arthritis, only to realize that this is a topic for a book, not a blog post. Still, not starting at all is accepting defeat too soon. 

Here's a relevant paper that I found among the first results of a search - Arthritis and Pain. Psychosocial aspects in the management of arthritis pain. It's not new, but when was the last time you saw anything happen fast in arthritis, with the exception of flares? The study is a perfect follow up to the shoes metaphor since Dr. Backman wrote this paper too.

To start with a definition and a direct quote from the paper:
"psychosocial factors refer to two dimensions of experience: the psychological (cognitive, affective) and social (interacting with others, engaging in life activities)".

The impacts that arthritis has can be seen in all parts of our lives, but pain is a huge topic that we are not able to ignore. It can result in what used to be small tasks, like getting dressed or washing your hair, becoming more difficult. Many activities start to take more thought and effort. 

Pain can also be difficult to predict or explain when others can't see it. You can look fine but it gets more difficult to make plans and commitments. It takes a toll on your self esteem too when pain is physically and emotionally exhausting and overwhelming.

Arthritis has impacts on our families and on our communities too. It was a huge change to my family when I was suddenly too tired and sick to be consistent in what I was able to do as a mom. I know it had an effect on my children.

With my husband, I worry. I saw the toll it took on my Dad and my father in law when they had to assume the role of caregiver when both my mother in law and my own Mom had health issues late in life.

The bulk of the cleaning and shopping fall to him now, and when I was too tired to socialize after working a full week, he also missed many get-togethers.

It's a balancing act

In my work life the stress was more a pressure to achieve results that it was physical, but that was in the job I found after it became evident that working full time in a bank took too much physical effort.

What many people find is that their whole lives change and dealing with illness and changes at the same time is very challenging.  I'll let Julie talk about some of the changes she has seen in her life.


"I think the biggest problem that I have socially is not being able to plan much in advance.  I don't know how I am going to feel on any certain day.  Sometimes, I will accept invitations with the understanding that I might not be able to make it depending on how good or bad I feel that day.

 

Clothing and shoes is also another consideration.  Trying to find something that looks kind of dressy and nice while wearing really clunky, orthopedic type shoes is a problem.

 

I try to never plan anything for the morning before 10:00 a.m.  It takes me that long to eat breakfast, take my medications, get dressed, etc.  I have to plan to go slow in the mornings - so no early morning socializing for me anymore.

 

When younger, I used to be much more sociable, but I have to limit the socializing  now.

 

I think it is all about knowing your limitations and accepting them".

Julie's outdoor cat, Grover

Hurt, Hurt - RA Playlist

Many of us have pain as a common thread in our conversations.  Hence the title of the post. It comes from Runaround Sue, an oldie by Dion and the Belmonts, and the best Hurt song ever.  

Listening to music is a good way to take your mind off of your body for a while. In fact music is an inspirational plus while writing blog posts.  It doesn't work as well when I try to understand a complex scientific paper unfortunately.  These days focus is more necessary than multi-tasking.

With chronic disease how many of us do not wish for Yesterday?  If only We Could Turn Back Time we think we'd be a lot happier.

Hurt So Good is an unknown concept in the RAD community, Misery is more apt.  For those with neuropathy Needles and Pins might be the song of the day.

                                            Needles and Pins - Neuropathy

Don't try to tell us that Everybody Hurts. That does not go over well: in fact it's a pet peeve. What we really have is All The Things You Never Wanted.

                                Things I never wanted in my house

What we hear from well-meaning friends is Don't Worry, Be Happy. They think that's a sure cure for what ails us when we Haven't Got Time For the Pain.

Really, the King of Pain is after us and we are trapped in a Sea of Heartbreak.  OK, that's a little dramatic. All we have to do is go Off To See The Wizard (rheumy). Hopefully then we'll be Feeling Good.

When that doesn't work I Fall To Pieces and wish for Novacane or  Dilaudid. (Note:Those are not my painkillers of choice, nor are they recommended).

We need to take The High Road so we don't Lose It and go Sliding Down the Crooked Road.  And here we are planning to exercise and the best we can do is Once Around The Block.  Even though we're younger we'll never have the Moves Like Jagger.

And for the final illness indignity All the Money I Had Is Gone.  We pay quite a price to coexist with chronic problems.

                                        guardian.co.uk

I'd say that What Doesn't Kill You makes You Stronger isn't  accurate with RAD. Physically you often lose strength.  Mentally it's hard to judge your own strength but we always hope for a Beautiful Day.

Your Brain on Pain

I have been worrying about brain power so I thought that reading blogs about the topic might help. One of them said "Ban the calculator" which lead me to think back to the year when calculators became so cheap that we gave them to people for Christmas presents. That was a big deal back in the 70s (?) and now you can get them free.

Maybe it's a sign of aging that I can now remember when commonplace items of the present were not a part of my life.

This worry about memory may be because of the "brain fog" connected to medication and illness that affects cognitive abilities.  Even mild sleeping pills can cause a decline, especially in the elderly (That starts when?).

Honestly I think that pain also has the effect of dragging down your thinking powers and your will to do things.  Before I was diagnosed with RA I has serious symptoms like fatigue, swelling, pain and weight loss but all I could think of was successfully continuing my life as it was.  That took all of the energy I had.  Even working only part time I would come home from work and fall asleep with my clothes on. So there was no energy left to help me develop ideas to solve the problem on my own or to find help for a solution.

It's amazing to me that so many people with chronic disease get past this and do so well at helping others get out of the trap. An effective treatment for your health problem is the best way to get out of this slump but that is as far away as the gold at the end of the rainbow.  Proper treatment was what finally got me on the slow train of not recovery exactly, but improvement.

Here is the link to the LifeHack post on increasing brain power
http://www.lifehack.org/articles/productivity/10-simple-ways-to-increase-your-brain-power.html
Tip #1 also sounds like a good way to have more fun, though it won't be sky diving for me. 

Really and selfishly my prime goal is to be happy and I think I finally decided that eating too much is not really making me happy.  I would like to be as happy as my old avatar looks like she was, or this baby.