What Are Medical Books Missing When It Comes to Psoriatic Arthritis?

By Vickie Wilkerson

3 min read

During a recent discussion with someone, I was telling them my history of psoriatic arthritis. It’s the same old tale that most of us have in that it took way too long to get the proper diagnosis.

Once that proper diagnosis was reached, it took forever to find the right doctor to treat it. The same things that all of us have been complaining about forever, right?

After telling my story, I was asked a very serious question: What are the areas that medical books fail to cover when it comes to educating new doctors about psoriatic arthritis?

What information I would include in psoriatic arthritis medical books

While a couple of things came to mind right away, for the rest of it, I had to take several days to think about my response to what I deemed a really important question. Now, I want to share it with you.

The dreaded pain scale

In fact, this one can be tossed out. I really wish I could help write medical books because this would be the first line I would put in them.

If it were up to me, I would tell medical professionals how we live with pain on a daily basis. We have gotten good at forging ahead even when our bodies are screaming at us to stop.

That pain scale that is in existence doesn't even come close to what we deal with. Here's an idea: invent a new pain scale just for PsA sufferers.

Start it out at five, meaning pain I can deal with, and extend it to 15, meaning it's a horrible pain, and I can't function. That might come close to an actual pain scale for us.

No, we are not seeking pills

I would put this in bold print. Stop believing we are coming to you just because we want pain pills.

What we want is a way to function so we can live our lives without being in so much pain. As it is, we already take a lot of medication, or at least I do.

I want to be able to do things like I used to without being laid up in bed for days because I tried to do them. Listen with open ears and try to show compassion for what we are telling you. Maybe then you will be better equipped to provide the best care possible.

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Take the time to get to read our medical history

Before you walk in that door, take a minute or five to read our files. I understand you have a lot of patients to see, but only spending five minutes with us, especially if we have had PsA for a long time, is not proper care.

In all my years, I can only think of one time when the student doctor took the time to read my file. Can you imagine how mind-blown and impressed I was? Because she took the time to read my file, she was able to tell the attending physician the correct answer to a question she asked about medications I had taken. Imagine what it would mean to the care you receive if they all did that.

Learn about psoriatic arthritis

If you are becoming a Rheumatologist, learn about all the different forms of arthritis. It is not easy to jump to the conclusion that it is osteoarthritis.

I have gotten so tired of hearing that when I knew it was something more. I understand there is not a definitive test to tell you it’s psoriatic arthritis, but that doesn’t mean we don’t have it. The earlier we get to the proper diagnosis, the sooner the destruction PsA causes can be eliminated or treated.

Changing the medical narrative

This is what I came up with. Now it’s your turn.

I’m sure you have more that you could add to a medical book if we as patients were able to write one. Add to what I have here or write another section to this book.

I’m sure there is more that I haven’t thought of but immediately came to your mind. List them in the comments below.

Who knows. One day our book might become a reality.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Eric_the_Eric Member
I've thought long and hard on this, and I believe that there are only a few things I can add. First, as Vickie alluded to, I would encourage doctors to focus less on the severity of the pain, and more on how the pain impacts, or limits, the patient's everyday activities. Because pain is, in so many ways, subjective, it is simply not very practical to come to a determination of disease severity/progression based solely upon such a poor construct as a 1-10 pain progression scale. Another thing that I have found bothersome is this dependency on lab results. Psoriatic Disease is notoriously difficult to diagnose with labs; ESR and CRP are often well within normal ranges for patients with PsA, so labs should never be the determining factor. Unfortunately, too many doctors have been trained such that, in the absence of these inflammatory markers, the patient doesn't have a rheumatoid disease. Labs are only a snapshot in time, and those inflammatory markers may well not be present on any given occasion, if ever. Labs can be a good indicator, but should not be the be all end all for a diagnosis. And, finally, I would like to add that there needs to be as much focus on lifestyle changes as on drug treatments. In fact, considerations such as alcohol and tobacco cessation, healthy diet and exercise, and stress management should be among the first things addressed. This isn't to say that patients should be blamed for their disease due to poor lifestyle choices. But education in this area needs to be a key part of disease management, and it's a conversation that needs to happen a lot more often that it is. 
1. Vickie Wilkerson Moderator & Contributor
 <inline-mention username="Mary Lynn" user-id="4513411"/> I agree with you whole heartedly and your rheumatologist. Sounds like you really have a good rheumatologist. So many other doctors could take a play out of your doctor's handbook. It is only by addressing all the issues we have going on that we can be properly cared for. Thanks for responding. Vickie W., Team Member
2. christine.laaksonen Community Admin
 <inline-mention username="Eric_the_Eric" user-id="6704533"/> you bring up such good (and important) points! The limitations of the pain scale are tremendous. And, personally, when you mention measuring how the pain impacts/limits day-to-day activities and living it seems like a such an obvious solution. (From my understanding, oftentimes when measuring mental health, specifically anxiety and depression, how much it's impacting day-to-day life is a big factor in whether or not it's considered clinical depression or clinical anxiety.) So why couldn't we address chronic pain in a similar way? And, I agree, the difficulty in a diagnosing PsA, and the lack of test or procedures or labs that can confirm PsA needs to be better taught to doctors. Lab results shouldn't be the end-all be-all for diagnosis, and I'm still surprised to find there are doctors who don't seem to understand this. Finally, yes, it would be great if doctors could take a wholistic approach to treatment. Not because there's a one-size-fits-all to eating/drinking/etc for getting relief, but because there ISN'T a one-size-fits-all for getting relief, and everyone deserves to have a doctor look at all the ways a person can get relief and manage their symptoms. Eric, thank you for sharing these great insights! -- Warmly, Christine (Team Member)
Drauboa Member
 I believe that orthepedists should be required to learn about all forms of arthritis and be able to identify it. Those doctors are the ones doing x-rays and MRIs to try to find a reason that you have back pain or other bone/tendon issues. 
1. Vickie Wilkerson Moderator & Contributor
 <inline-mention username="Drauboa" user-id="3285041"/> I don't think a lot of people think about arthritis when it comes to one's feet, but I do agree they should be trained in all forms of arthritis. Vickie W., Team Member
Fifis Member
Hi Vickie Winterton I totally get behind what you are saying! I also think that if a patient says I have a family history going back four generations of psoriasis and psoriatic arthritis then that should be taken into consideration instead of constantly telling the patient there are no signs that this is an hereditary disease (as I was told for twenty years) There were lots of red flags in my past medical history of autoimmune disease but all were ignored The latter comes about because you very rarley see the same physician twice (I'm in the UK) there is no continuity of care here and I do understand that there are enormous pressures on health care but I also feel this disease is not taken as seriously as other chronic illnesses 
1. Mary Lynn Member
 <inline-mention username="Fifis" user-id="4532016"/> , excellent point about family history. I am sero positive RA with an overlap of PsA. Some scalp psoriasis and nail pitting years after my RA diagnosis led my rheumatologist to do further testing, which showed that I have the HBLA -27 antigen. Anyway, when I mentioned that 2 of my cousins have axial spondylarthritis, my rheumatologist was extremely interested. He wanted to know what medications they were on and how they responded. I am very sorry that you don't see the same rheumatologist. With this being a chronic disease, a doctor should be able to follow you over time. My joints can look OK at one appointment and be a swollen, hot mess at the next.

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