Wednesday, June 12, 2013

A Problem & A New Vision for RA Treatment



“The type of pain associated with moderate-severe RA is comparable to bone cancer.”

This is a quote from a recent post by Vanessa Collins on HealthCentral, an interview with Mischelle Jackson, who lives with RA. The source of the quote is Mischelle's rheumatologist. And it has been reverberating in my mind since I first read it a week ago.

I have never heard anyone compare RA pain to any other pain. It makes sense, though. This lifts pain out of the very individual and problematic 1-10 pain scale. A scale which, exactly because of its individual nature, does nothing to convince doctors that your pain is very real and is indeed that high. Assigning an arbitrary number that varies from person to person — and varies from experience to experience within one person — feeds the notion that high pain equals the person not coping well with the pain (as opposed to being a really high level of pain). And so, catastrophizing enters the picture.

Yes, that again. I’ve shared my feelings about that concept before more than once, but let me recap. It is a term used to describe the way people with chronic pain deal with their pain. Or rather, not deal with it. It’s a concept used in medicine and medical research to indicate that a person worries a lot about their pain, magnifies the pain and its impact and includes a feeling of helplessness. Which to most people who actually live with chronic pain sounds like a pretty normal response to high levels of pain. Right? I do think that there is such a thing as coping well and coping not-well with pain, but I also think that medical professionals labeling certain statements and emotions as catastrophizing is condescending and patronizing and shows complete lack of empathy.

Me? Opinionated? Whatever makes you say that… 

Many rheumatologists don't prescribe pain medication. They tell their patients that they treat inflammation and that if they treat the pain, it will mask the inflammation, making it impossible to see if the disease is responding to the meds. This is a good point and works well with the increasing number of people whose disease response to the medications that are now available. But some don't. And what about them? They may be referred to experts in pain management, but there aren't enough of those. Some areas have no pain specialists, others have a few, but the waiting lists are so long that you can wait a year or more to get in. This leaves people with few options. Some are lucky when their family physicians step in and fill the gap. However, family doctors are not pain specialists, may not know what is available or may not be comfortable prescribing narcotics. Leaving the person without effective pain control.

And this is where I start asking questions. Such as, is it ethical to not treat RA pain? Is it ethical to say "not my specialty" and move on, leaving the patient with a huge, unaddressed problem? A problem that prevents them from having any meaningful quality of life and may very well contribute to depression or suicidal thoughts. Let's put it in perspective: what if an oncologist said that they treated cancer, not the pain that is caused by the cancer? Would that be acceptable? Or would it be seen as a failure of their duty as a doctor, even cruel?

Perhaps catastrophizing — or shall we call it not coping well? — is so much of it a player in the chronic pain field because people do not have cause to feel confident in dealing with their pain. If your doctors won't treat it and you can't access the specialists that can treat it and teach you how to live with it,what reason would you have to feel confident in your ability to cope with the pain? And would this not cause you to worry about your pain, feel that is taking over your life and make you feel helpless? Perhaps the issue is not why people who live with RA catastrophize. Perhaps the more pertinent issue is why health professionals minimize the pain we experience. 

About a year ago, I asked why the first step when diagnosed with cancer is to see an oncology social worker, but people who are diagnosed with a chronic illness like RA are sent on their way, expected to cope on their own. The same question applies to pain management. Oncology includes a knowledge of treating pain or at the very least having a specialist on staff who is an expert in treating cancer-related pain. Why do rheumatology departments not do the same?

Dr. Edward Keystone, a leading Canadian rheumatologist, calls RA "a medical emergency." Perhaps it is time that the field of rheumatology starts treating it as such. This doesn't just include early and aggressive treatment to enhance the possibility of going into remission, but also an awareness of the reality of living with RA and the impact it has on your life. Each rheumatology department at every hospital ought to be one-stop shopping. You see the rheumatologist, get a diagnosis and a prescription for medication. Before you leave the office, you will also have a referral to a social worker who can help you adjust to your new reality and connect you to community resources who can help when you need it. If you do not respond to medication or have moderate to severe disease, you get an automatic referral to the pain specialist who is part of the clinic.

What other services would you include in rheumatology clinics?
  

12 comments:

Melissa Davenport said...

This is an excellent post, Lene. Very true that many don't have access to proper pain management.

I am very lucky that my family doctor prescribes pain meds for me. To be honest, I don't tell my Rheumatologist that I'm on them. In my mind, I don't want him to tell me to not take them because he might not be able to tell if the meds are working, but even with the pain meds, I can tell if my RA meds are working. After all, if they were working, I wouldn't need to take pain meds.

Marietta said...

When I was a kid with arthritis (dx age 10), the pediatric rheumatology office I went to had a staff social worker, to make sure kids and family were doing ok. Of course, it was unhelpful at the time, what I needed was better pain management and a more understanding family (my siblings mostly).

Today, I think pain management for autoimmune arthritis is a major crisis. We DO need social workers to help us adjust. We need everything you posted about Lene. And we need it now.

Annette said...

I would definitely include physiotherapists and occupational therapists in a rheumatology clinic, and at least the names of GOOD orthotists to help with orthotics for foot pain.
It would be great to have an "ask the doctor" email for non urgent questions such as "Here is a picture of my rash. Do you think I need to see the doctor?" or "I plan to have surgery. How long do I have to be off of my medications?"

Dealing with pain is such a problem. When I do take painkillers I feel so much better than I normally do and yet I do not like to take them everyday.

Anonymous said...

Physical therapy and nutritionalist

Social worker would be a very helpful resource especially as you wade through medications and labs, affected and options for work especially FMLA.

I'm lucky with my RA doc she prescribes my pain meds and is a firm believer in quality of life!

Cheryl said...

Wonderful post Lene! My family doctor was prescribing pain meds for me, but he wasn't giving me enought to control the pain I was experiencing. I finally asked my rheumatologist for a referral to a pain management specialist. It took me several tries to find a pain specialist in my area that didn't just treat back and neck pain only. The funny thing is, when my rheumy wrote my referral, she wrote that she was referring me for fibromyalgia, she wouldn't refer me for RA. I do have some pain from my fibro, but it wasn't anywhere near the pain I experience from my RA.
And I could have really used a social worker when I was first diagnosed to help me cope with the diagnosis and find resources.
Thanks as always for your informative and insightful posts!!
Cheryl

Vanessa Collins said...

Amen, Amen, Amen!!! Did I say, Amen?!?

AlisonH said...

YES YES YES!!! My daughter has been fighting this very fight: her rheumatologist not only doesn't believe in giving out pain meds for her lupus, she actually called and yelled at her family practitioner for prescribing them because she wouldn't!

If she's worried about masking symptoms, how about letting the patient tell how the disease is doing? Y'know, in her case, the one that has the PhD in molecular immunology...

Anonymous said...

Hi Lene.

Thank you so much for your thoughtful post. I saw a Rheumatology Conference schedule of presenters for sometime summer 2013 in Las Vegas. I'm sorry, I can't locate the reference to the conference right now.

There will be a presentation by a "pain specialist" espousing the latest research on central pain theory in rheumatic disease. I think the presentation is by either Goldenberg, Clauw or Fitzcharles.

This prompted me to continue reading several of the latest published journal articles by "leading scientists" in the field of pain management and rheumatology. The writings make me angry and then my scientific, researcher mind kicks in. I will be writing a paper about "central pain theory" and why the research is significantly faulty.

As an example of one of the latest publications, check out highly distinguished authors who wrote: "New Concepts in Pain Research and Pain Management of the Rheumatic Diseases" by Goldenberg, Clauw, and Fitzcharles (2011) in the Seminars in Arthritis and Rheumatism, Vol 41, 319-334, doi. 10.1016/jsemarthrit.2011.04.005. I believe this has also been published in the Pain journal in 2011. http://211.144.68.84:9998/91keshi/Public/File/9/41-3/pdf/1-s2.0-S0049017211000941-main.pdf

To be frank, this type of promotion of such an inadequate theory without significant challenge has to stop !!!!! Our lives are at stake.

Central pain theory does not adequately address many of the confounding variables that are present in rheumatoid arthritis. These variables relate to disease processes in people with the disease as well as factors such as inadequate monitoring of disease activity due to poor assessment measures, lack of training of physicians, and infrequent monitoring of co-morbid medical conditions.

Central pain theory does not account for the significant systemic disease process that affects ligaments, tendons, muscles, tissue, joints, cartilage, organs, lymphatic system, vascular system...etc... If one looks closely, the research on pain in RA doesn't begin to tap the surface of the pathophysiology of our disease. It's infuriating !!

We've all heard terms like catastophizing, exaggerating, amplifcation of pain, depression or other mental health labels that are thrown at us as the cause of the pain. You tell me how it is that children as young as 18 months who are diagnosed with Juvenile Idiopathic Rheumatoid Arthritis have the capability to put-on any of these nonsensical behaviors and how this adequately explains the disease or their pain. ENOUGH IS ENOUGH !!!

Anonymous said...

The other one-stop shopping service that we desperately need is associated labs for MRI and ultrasound imaging of our joints. This is done routinely in Europe. In fact EULAR just published guidelines on using MRI and ultrasound in rheumatology and why it is superior to either xray or joint exams. Research has shown that ultrasound and MRI are much more reliable in showing inflammation AND erosions than a rheumatologist poking around at our joints or xrays. I'll take scientific, objective evidence (advanced imaging) over a middle age man's opinion any day.

There is a debate in rheumatology about if there's a need for rheumatologists to be trained to do ultrasound. I think the debate is ridiculous. There are millions of labs with highly trained radiologists and technicians who can perform these procedures. Get over yourselves rheumatologists !!

Sorry but you've hit me on a pain-filled day and my tolerance is down.

Lene Andersen said...

Anonymous - would love to continue this discussion, you have some great ideas. But... I don't know who you are! Email me at landers5ATgmailDOTcom, please?

HellOnWheelz said...

Arthropathy - RA, OA, psoriatic or other related sub-types - are ALL painful. The difference in pain treatment by the medical community between a Dx of arthropathy and a Dx of a more convential disease (such as cancer) with equivalent pain levels is this: the convential disease Dx presumes a CURE will be accomplished, a Dx of arthropathy is chronic - there is NO cure. Anyone with a chronic auto-immune disease will tell you - we are, for the most part, on our own.

livingwithra said...

Thanks for bringing attention to this neglected topic. I would love to see newly diagnosed RA patients see a counselor of some type to help them wrok through the myriad of issues that comes with having a chronic disease.
Andrew