Visual Evidence of Inflammatory Arthritis – When ‘Invisible’ IS Visible

Visual Evidence of Inflammatory Arthritis – When “invisible disease” becomes visible. What Axial Spondyloarthritis & Psoriatic Arthritis looks like and how it manifests in other ways throughout the body.

Get ready for some gross photos! In my opinion, there aren’t enough photos of this kind of thing online. And if I ever need an immediate article to show a doctor, I can now pull this article up and show them.

Today is my 15 year anniversary for axSpA! I can’t believe I’ve lived with this awful disease for so long, nor can I believe what it has stolen from me. It’s ironic that I’m writing a post that shows how happy and fulfilled my life was until chronic disease struck and took everything away from me.

I’ve spent the past month going through this site to update old articles. MSW is 17 years old, so it is filled with happy memories of extensive travels and all the activities I used to do before I became disabled. It can often be a bitter reminder.

Yet I still run into attitudes regularly that show people do not believe I am disabled.

Most people think of arthritis as an invisible disease but…

It’s visible when you know what you’re looking for and looking at! For years I’ve hesitated to show photos because it’s gross. It’s still too easy for doctors and everyone else to dismiss arthritis. My doctors are constantly asking for photos to show Taiwan NIH that I need my arthritis medications.

It’s important for others to SEE WHAT THIS DISEASE DOES TO A PERSON. Maybe seeing these photos will let another patient out there know that they’re not alone.

Today’s post shows you that it’s ‘not just arthritis’.

Statistics for inflammatory arthritis are quite high so keep in mind lots of patients suffer in this way. My arthritis isn’t what most people think of when arthritis comes to mind.

It seems strange to be showing you what my life looked like before I became ill and disabled. But the changes are graphic. I wish everyone could understand how my life has been left in ruins. I wish all doctors could see the before and after photos of a patient’s life so they understand that a person’s life is not theirs anymore when disease takes over. There’s not much left of who they used to be once disease starts wreaking havoc.

Trust I will continue updating this article as there is no doubt in my mind that more’s coming.

Here are some photos of my life before my diagnosis and after my diagnosis. I was a world traveler and had been to 35+ countries before arthritis ended my travel days.

Why is visual evidence of inflammatory arthritis needed?

Visual evidence of disease is crucial for many reasons:

It Provides Accuracy in Diagnosis

The first think I want to talk about is accuracy of diagnosis. Visual evidence is tangible proof of the presence and extent of a disease. It is the first thing that rheumatologists ask for when I tell them my disease activity is escalating. It is the number one request from doctors.

It helps healthcare professionals to make accurate diagnoses. Visual evidence offers valuable insights that complement other diagnostic methods such as laboratory tests or patient histories. It also reminds me it’s real!

Treatment Planning

Visual evidence helps doctors come up with appropriate treatment plans. For example, I have psoriatic arthritis as well as axial spondyloarthritis. My doctor needs to be reminded of my skin problems when he’s looking at different treatment options for me. Different diseases, even ones in the same family of autoimmune arthritis, might require different approaches to treatment.

A visual diary shows the severity and specific characteristics of your disease. It can help your rheumatologist choose a treatment plan. (And since my rheumies don’t read this site, I can now just send them this link if they need/want more proof for the government.)

Another example I can think of is that I’ve had recurring bouts of shingles. Being able to show my doctor what is happening also reminds him that he has to disqualify certain treatment options for me to avoid shingles getting worse.

Monitoring Progression

Visual evidence serves as a baseline for monitoring the progression of the disease over time. And boy, does my disease progress and change over time! That’s why I take photos regularly of what’s happening and I document it by date and with which meds I’m on. But doctors also need to do this.

By regularly comparing visual representations (such as images or scans) taken at different stages of the disease, healthcare providers can assess the effectiveness of treatments. This also helps them identify if your disease is getting worse or perhaps improving.

Patient Education and Engagement

Visual evidence helps patients understand their condition better. Not that I need reminding of how bad it is. But sometimes when I see tangible evidence of my disease activity from 10 years ago, it reminds me that I’ve experienced certain distressing symptoms in the past.

Communication with Other Healthcare Providers

Visual evidence facilitates communication among healthcare providers. Plain and simple, if I had not documented my psoriasis and shown it to my dermatologist who was then able to consult with my rheumatologist about it, I would not have a confirmed psoriatic arthritis or health coverage for my medications!

When multiple specialists are involved in a patient’s care, visual representations of the disease provide a standardized way to convey information, ensuring that all members of the healthcare team have a clear understanding of the situation and can collaborate effectively.

Research and Education

Finally, visual evidence of inflammatory arthritis contributes to medical research and education. Images and other visual documentation of diseases are valuable teaching tools for medical students, researchers, and healthcare professionals. It helps them learn about different diseases, their manifestations, and their management.

Overall, visual evidence of disease plays a pivotal role in healthcare by enhancing diagnostic accuracy, guiding treatment decisions, monitoring disease progression, empowering patients, facilitating communication among healthcare providers, and advancing medical knowledge and education.

Inflammatory arthritis is graphic and it will completely derail your life. And I happen to be a complex patient. If I had to compare myself to others, which I KNOW I SHOULDN’T DO, but if I did, I’d say I’m one of the sickest people I know. That’s thanks to comorbidities that wreak havoc and feed off my arthritis.

So not only is arthritis slowing me down and hitting every part of my body, but the other diseases I have that often accompany arthritis have made my health into the perfect storm, and it’s been that way for two decades.

My reality is it’s not going to get better. I think this is all I can expect from life now. Thus I MUST concentrate on things within my range of accessibility that bring me joy.

EPIDEMIOLOGY OF AXIAL SPONDYLOARTHRITIS: AN UPDATE – National Library of Medicine 2018-2019

Below: Free CDC poster about arthritis

Note that more than 20% of adults with arthritis find it very difficult or cannot walk three blocks, such as from a parking deck or subway to work! Three in 10 find stooping, bending, or kneeling very difficult!

Visual evidence of inflammatory arthritis – Bring on the gross photos!

Swollen and grotesque joints from crippling inflammatory arthritis that started in 2009…

Surprise! My first symptom of inflammatory spinal arthritis actually didn’t show up in my back first. It showed up in my knees and my feet. The first sign for me that something was really wrong was bilateral swelling of both knees and my toes.

Edema and fluid filled limbs

Perhaps one of the most embarrassing and most depressing aspects of life this year was catching a glimpse of my legs in March and realizing that I don’t think it can get worse than this.

I had edema running from hip to toe in March 2022 and then again in 2023. Edema was also present in my upper body and face for most of 2022 and 2023. Some days I wake up and my face is super puffy and tight. My upper body looks puffed up in many places. It took that long for the fluid to go away.

Do you know what it’s like living with fluid in your body? It’s very painful. It’s also very itchy and distressing.

Add bonus points if you can figure out which part of my body is featured in the bottom center photo.

Skin disease: Psoriatic Arthritis, MCAS, & Drug Reactions/Allergies

I can’t even begin to tell you about all the skin problems I’ve had since I was a child. After I had two allergy tests done – one at age 6 and one at age 24 – I learned I had more than 200 allergies. I’ve discovered I react to almost everything, especially metals and chemicals. And because I react to almost everything, I’ve had really weird skin rashes for decades.

I was diagnosed with Psoriatic Arthritis years ago. I’ve always felt my never-ending skin problems are small compared to what I’ve seen with other patients.

But the myth is out there that you need to be covered in psoriasis to get a diagnosis.

In reality, many PsA patients qualify with just 5% of your body being covered with psoriasis. I didn’t even realize how bad my psoriasis was until I started taking photos of it. Despite having a heavy family history of PsA on both sides of my family, my 2018 rheumy never sent me to a dermatologist for confirmation!

So here’s what it looks like and while I don’t get massive patches of it, it still shows up regularly on my legs, hands, elbows, butt, face, on my head, and IN MY EARS.

Shingles

This is some nasty shit but it’s my life and I want to show you what it looks like. My doctors didn’t even know what it was at first. The only reason I figured out what this painful rash is is because I attended the American College of Rheumatology convergences and they cover this topic every year. Patients who are on immunosuppressants often have massive problems with shingles.

I had mono at age 14 and have had this rash popping up in the same places for more than 20 years.

Now I get it almost every month. Corticosteroid shots and prednisone triggers it at the 72-hour mark. Certain biologics trigger it. Stress triggers it. Illness triggers it. It’s nasty and I wish someone had told me that I need to get the shingles vaccine. I was treated with anti-virals in December 2023 but it doesn’t feel like the helped. I’m not sure when I can get the Shingrix vaccine. I need to get inflammation under control first.

It’s too late now. I hope someone reading this benefits from seeing these photos and doesn’t have to wait so long to get a proper diagnosis and for a doctor to take it seriously. Shingles is SO PAINFUL!

So that’s it for now. Trust I’ll be adding more evidence to this post to ensure people understand that autoimmune disease is visible and it doesn’t go away.

All we can hope for is remission and slightly easier days with less visible symptoms. So that’s that.

An invisible disease is now visible and you have visual proof of inflammatory arthritis.