Psoriatic Arthritis Woes: What I Wish My Rheumatologist Knew

By Vickie Wilkerson

3 min read

My PsA journey is as unique as my fingerprint and certainly not a one-size-fits-all. This pain is not all in my head - and I have to explain it often. Finding people who exercise compassion, empathy and an attempt to understand is far and few between. This is especially true of my rheumatologist.

I mean, I could write a book on all the things I want my rheumatologist to know. For the last 2 years, my appointments have been a nightmare.

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What does my psoriatic care look like?

I am on Medicaid. I cannot see a private rheumatologist because none of them in the whole state of Louisiana will accept Medicaid as payment for services. Yes, you read that correctly — the entire state. The same holds true for dermatologist which I should see for my psoriasis.

To receive care, I must go to a teaching hospital to get care for my psoriatic disease. It is the rheumatology department that I go to for both conditions because this hospital doesn’t even have a dermatologist on staff. That means that I am treated mainly by a future rheumatologist.

Sometimes you just want an experienced doctor who has patient bedside manner, that asks the right questions, and genuinely want to know how you're doing. I can't find that at this hospital.

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I'm often left feeling frustrated!

I know that I should be content that I'm getting treatment at all - and I understand that sentiment. Alas, I am not. Don’t get me wrong, interns need to have hands on experience before going into private practice. However, it does not provide any kind of adequate treatment when it comes to treating these conditions.

Many times, I feel more like I am the doctor instead of the patient. Thankfully I do know quite a bit about psoriasis but not so much about psoriatic arthritis. That should be their domain since they are going to one day be a rheumatologist.

I find myself telling them more about what I know than them telling me about arthritis and the damage that is happening in my body.

What do I want my doctor to know?

In a nutshell, I am constantly having my own advocacy tested as well as my knowledge on these conditions. Sometimes all these interns want to do is focus on my psoriasis - it's important to me that both my conditions are addressed, researched and treated.

Now you know my experiences, allow me to gripe about what I wish these soon-to-doctors knew.

Why shouldn't they use the pain scale?

The pain chart is a total waste of time. I can give you a number of my current pain level between 1 and 10 since 10 is the highest but given the fact that we live in pain daily 10 is not a sufficient number to detail that level of pain. My level on any given day is above 10. My answer “well about a 3.”

What can they learn from us?

Trust me, don't misdiagnose me. While I understand you must treat me for both conditions, please take the time to learn something about psoriasis since that is the case. I do not need you to tell me that I never had psoriasis, that I have vitiligo because you see the hyperpigmentation left on my skin.

Why should they listen to us first?

Listening is key! Take the time to truly listen to what I am telling you. If I have to get to a point of telling you to go get the doctor on duty you will never treat others with psoriatic arthritis in the proper way either.

Do you have anything you would like to add?

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Do you also find it painful to sit for extended periods of time?

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Amy68 Member
If it weren't frustrating enough that our disease doesn't have it's OWN specialist, trying to find a Rheumy who treats PsA is challenging too. And then you have to hope they're taking new patients. Or in my case, new self-pay patients. And that you can afford it. (Here, $350 first visit, $150 each additional visit.) Have you tried asking if you can self-pay a private rheumy? I don't believe it would be considered insurance fraud since they don't take the payment plan you DO have. But back to your question. 1) Don't chalk everything up to the fact that I'm menopausal. I have very few menopause symptoms but a whole lot of PsA symptoms. 2) Don't write off symptoms just because they're not mentioned on the Johns Hopkins or Mayo websites. 3) LISTEN to me when I tell you what's worked and what doesn't. Conversation works both ways - I talk, you listen; you talk, I listen. Rinse and repeat. 4) You don't see me on those awful fatigue days or during bad joint pain. You see me when I've showered, dressed presentably and did my hair. The difference would astound you. 5) I'm here for your guidance and expertise but if you don't explain your reasoning to me how can I put any faith in what you want me to do? See #3. I could do this all day ... 😁 
1. Amy68 Member
 <inline-mention username="CathyD" user-id="3278598"/> I'm glad! I really do find reading through the posts and comments on this site helpful. Not just for the camaraderie and understanding, but also in articulating what I want to say, in explaining things to others, for coping techniques and ideas, and so much more. I sincerely hope that my comments help others just as much. I'll add to the list soon. 😁 
2. CathyD Moderator
 <inline-mention username="Amy68" user-id="6765940"/>, I can say from personal experience that your comments do help others here just as much! We always love hearing from you and so appreciate all your input. Hugs 💖 -Catherine, Community Moderator
mandyfish Member
I sometimes wish I had the energy to report my old Rheumy to the authorities for malpractice! The whole 8 years I was using her she never once started the benefit in light exercise and movement. In fact she went as far as saying every time I was in pain I should rest…! I believed her and rested and then ended up with so many other physical issues because I had lost muscle stretch etc. it took me two years with an EP to get my body back into working order-throughout multiple flair up’s as well. Those 8 years were miserable, since moving rheumatologists and getting proper advice I have so much of my life back. Only giving medication and recommending rest only was, in my eyes, malpractice. I would love to tell her she ruined a huge chunk of my life and ask her to change her recommendations to others. 
1. mandyfish Member
 <inline-mention username="Amy68" user-id="6765940"/> ouch! A broken ankle sounds painful and annoying!?! Thinking back to when I was first diagnosed I did a deep dive into internet research. But I found myself getting very worried and pessimistic which is the complete opposite of me. So I quit all the online support groups and searching and just concentrated on me and what I was experiencing. I thought that I would ‘cross those bridges if I came to them’. I suppose that is when I started only hearing what my Rheumy was offering which in hindsight was the problem. And yes, always look forward, can’t change the past 😊 Best wishes 
2. Amy68 Member
 <inline-mention username="mandyfish" user-id="3298688"/> internet research can have its drawbacks for sure. I try to avoid focusing on symptoms and instead focus on treatment options. But I'm also one who doesn't read the side effects on medication so I don't influence myself - I give them to a trusted friend and if I start complaining about anything on the list, she tells me to see the doc. lol. As to groups - this is the only one I participate in and I really feel a connection to the other members, which helps in coping with the frustrations of this disease. You nailed it when you said annoying with regard to the ankle. I'm used to dealing with pain, but the frustrations are what's really dragging me down. Even the simplest tasks, like changing the cat box or watering plants or prepping food for the week are challenging, and I won't even start on the difficulties of taking a shower. My bed is only properly made the day my neighbor changes my sheets because I can't get around to the other side of the bed with the way the furniture is arranged. Laundry is a monumental task. I suppose if nothing else, this whole thing is a lesson in patience. When I've eventually run through every curse word I know, my problem-solving skills finally kick in and I figure out the best way to tackle whatever's at hand or learn to let it go. The sheets are pulled up and it doesn't really matter if the bed isn't perfectly made. And the other lesson is forcing myself to ask for help when there's just no way for me to manage it. Like getting the trash out to the bin since there's just no way I can get down steps on crutches by myself while lugging a bag of trash. Ugh. It'll all be easier when I finally get into a boot and reach the weight-bearing stage. Hope you're having a lovely weekend!
mandyfish Member
Catherine you are so kind with your words, thank you ♥️ EP must be an Australian thing sorry- exercise physiologist. Trained like a physiotherapist but specialises in exercises that support specific needs. So once an EP assesses you and all your specific physical ailments and needs, they write a program of exercises to follow. For me it was building up the muscles around my bad knees and feet etc which actually helped dramatically! I was amazed at how much pain dissipated once my knees were working better and more supported by the outer muscles. She was also able to diagnose and fix the propriaception disorder that was a result of joint issues and minimal exercise. This has completely stopped my falls. I am a different person after gaining my strength back, yes I still have joint and tendon issues but lots of my pain was due to other mechanical issues which were dealt with. I also feel more positive about the future with older age, I feel much more stable, balanced and strong. In case anyone is interested, the types of exercise started very gentle-walking in a therapy pool, resistant bands, simple gym machines with minimal weight. Every 6-8 weeks I would be assessed and a new plan made to follow. I could do it at home with a few cheap items or could do a session in the clinics group area. If I was in pain one week she still encouraged me to come in and she adapted the session to focus on other areas. At first I was resistant of this (brainwashed by Rheumy to rest and feel vulnerable) but I soon learned what my body needed and benefited from and would attend every week. I am very lucky to have EP and Physio readily available and covered on my plan. I know those costs would be restrictive to many but knowing you can do the plan at home and only see the therapist once every few months might be an option. Rheumatologists and most doctors don’t recommend exercise as much as they should. Don’t fall into the trap of only listening to them. Best wishes to everyone x
1. CathyD Moderator
 <inline-mention username="mandyfish" user-id="3298688"/>, thank you SO much for taking the time and energy to share more with us all. I love that we can learn so much from each other here. A quick internet search tells me that we do have exercise physiologists here (I'm over in the UK), I had just never heard of them! I will definitely be looking into this as it seems like such a useful therapy, and great that they can target both specific areas of the body and specific things that you're struggling with. I had a couple of courses of "regular" physiotherapy, probably over 10 years ago now, as I had some trouble with my knees too, due to PsA - strengthening the muscles around the knees did really help take some pressure off. I would love to have a more targeted/in-depth assessment! I had also never heard of proprioception disorder - that must have been awful. Falls are really horrible aren't they, and such a shock to the system when they happen. I'm so glad that the physiotherapist was able to help so much with this issue as well. It sounds like she really worked with you and adapted the program to what would work best for you as an individual. Thank you for going into detail about what kind of exercises are included on your program - it always helps to hear specifics with these things. Do you mind me asking how many days per week you do the exercises? And did you have to build up to doing them more often or have you done the same amount consistently throughout the program? So glad to hear that you're feeling much better now, and in so many ways. I do hear you on still struggling with symptoms though. I hope one day we can all get the full relief that we deserve. Thank you again for sharing here and being so generous with your experiences. Warmest wishes, -Catherine, Community Moderator
mandyfish Member
In a perfect world where life, family, work doesn’t get in the way I would love to do a little bit every day but that never happens. At the start I was only working part time so I was able to go into the clinic twice a week and would do one pool session and one gym session with an EP all to myself. They could look at every move I made and make adjustments to my style which helped me to really understand what muscle was being targeted in each move. Those 1 hour sessions were gold! I was not only looking after my physical needs, I was getting unselfish me-time. At the beginning it was very soft and all about retraining my mind and body talking to each other. Every two months they would do an assessment to capture the improvements and then adapt the plan to increase slightly and target more areas. I had a big say in what goals I wanted to achieve as well. Like strength in going up stairs and ablilty to get off the floor to name a few. The clinic sessions would have some cardio in them as well so it was a well rounded exercise session. Then at home I would just do some of the strength bits when I had the time. I am much more disciplined when I have appointments each week then relying on me finding the time 🤣 There were set backs like Covid and other illness but once I saw how quickly the muscles weakened after only 5 weeks off, I realised the benefit of consistency. EPS are my rock stars 🤩 Best wishes! 
1. CathyD Moderator
 <inline-mention username="mandyfish" user-id="3298688"/>, wow, that really is extremely targeted and tailored! How amazing. I'm not surprised this has been so helpful, given how attentive the EPs are in these sessions. It's great that some of the exercises can be done at home as well, once you know what you're doing. I do hear you on being more disciplined at appointments, and trying to balance work/family life with finding time for the exercises. Setbacks can really get in the way as well, as you say. I had built up to being reasonably active last year (walking every day and doing weights two or three times a week) but then caught COVID for the first time this January. I'm more or less back to square one now and have been feeling rather disheartened. You've inspired me and given me hope. I'm really happy that you've benefited so much from this program. Thank you again for sharing here. We appreciate you! Warmly, -Catherine, Community Moderator