So What Does RA Feel Like?

There is a big difference between rheumatoid arthritis and osteoarthritis. Osteoarthritis is the kind from overuse that causes your knee/elbow/hand to hurt when you over use it, or maybe even when you aren't using it. Rheumatoid arthritis is systemic and starts with your little joints - like your feet and hands. The joints become achy and bulge and more.

This article explains better than anything else I have seen on what RA really feels like:

Like the fatigue and exhaustion after climbing a mountain or running a marathon.
Like the aches and pains after a significant fall or being in a car accident.
Like the full body aches and pains of a bad case of the flu.
And the stress as you wait for a flare to happen and make all the aches and pains start again.

"However, in order to truly understand, you must envision your injury, the flu, and the exhaustion all occurring at the same time. You must accept that your body would not heal in a few days, you would not be refreshed after a night of good sleep, and your ‘normal' would forever be compromised. But like all RA patients, in time you would learn to adjust. Having Rheumatoid Arthritis is not the end of the world it's just another way of living in it."

Not only that you can't forget the mental confusion sort of like chemo brain.

This is part of my life. And add in all my other health issues and I am the picture of health.

Stop Comparing

When I was diagnosed with breast cancer, I quickly learned every person's cancer is different - even if they have the same diagnosis. (This is why it is so hard to treat.) I learned not to compare myself to anyone else. In every support group, even if we had the same diagnosis, we learned how different all are.

I get this. We are all different. We can't compare our cancers to each other.

But.... why do I keep comparing my rheumatoid arthritis to others? I have to stop comparing myself. My mother has had RA since 1989 and a friend (exact same age as me) has had RA since the early 2000's. Their differences are striking. My mother was diagnosed when they only treated RA when it became symptomatic so she has many of the deformities and issues common among patients treated according to the old standards. But her health is much more stable than mine. My friend has had RA and has very few problems. Until she retired (for non-health reasons), she worked full time including much business travel and long days.

Me? I struggle with fatigue, pain, and more fatigue and more pain. How did I get to be so special? I try not to compare myself with my friend but I do.

As medical diagnoses go, everyone is unique. It doesn't matter if three people have the exact same diagnosis but because of their genetic make up, medical history, and other issues, each is unique. No two are alike (boy am I glad I am not a doctor trying to cure people). And everyone interprets everything different. Some people might be distressed by a little nausea and others may not think it significant.

The lesson that I need to better learn is that I need to stop comparing myself to anyone else's medical stuff. I am unique and so is everyone else. I just need to focus on this life lesson. I think I will stop whining as much if I did. Everyone else will appreciate that part.

I Think I Should Go Back To Bed

Sometimes the day just doesn't start off right.

• Somehow my laptop screen is cracked. It was fine last night.  I have no idea how this happened. I can order a new one and have it home waiting for me when we get back. (I get to use my husband's in the meantime.)
• I get an email that says people with RA have lower cancer survival rates. Need I say more?
• We are at the beach and its cloudy. Where's the sun?

All reasons to go back to bed....

I had the wrong question

I was going to ask my rheumatologist if my rheumatoid was in remission. That was the wrong question to ask.

I should have been more concerned about joint erosion and disease progression.

Damn.

So I got to get x-rays and ultrasounds of my hands, wrists, ankles, and feet. I was tired by the end of the x-ray session. I am not good at standing around these days. Particularly while standing in a specific position and not moving while they take issues. All of my feet and ankles had to be weight bearing. That was Tuesday.

Yesterday I went for an ultrasound of my right hand and wrist. I was looking at the images on the screen. I asked the tech how she could tell what was what - the answer was a lot of training. I said the image of my wrist looked like the ocean in an old print of an ocean with a ship.... She agreed.

I will get the results at my next appointment. And then we will discuss additional treatment options. The problem is that the TNF (tumor necrosing factor) which is some how part of the new fancy biologic treatment options. So my rheumatologist has to talk to my oncologist first.

Rheumatoid Awareness Day, Not Arthritis Day

I was wrong. Tuesday was not Rheumatoid Arthritis Day, it was Rheumatoid Awareness Day. This was started in 2013 by the Rheumatoid Patient Foundation. For 2016, they asked people to select one of their Rheumatoid Disease Facts and blog about it. 

In addition to the fact that I was wrong about Rheumatoid Awareness Day, I was also not aware that rheumatoid arthritis is only one symptom of rheumatic disease. 

So I did a little research. Here is a full list of all the other rheumatic diseases with a brief look below.

• Bursitis. A condition involving inflammation of the bursae (small, fluid-filled sacs that help reduce friction between bones and other moving structures in the joints) that produces pain and tenderness and may limit the movement of nearby joints.
• Fibromyalgia. A chronic disorder characterized by the presence of tender points—points on the body that are painful upon the application of pressure—and widespread muscle pain.
• Gout. A type of arthritis resulting from deposits of needle-like crystals of uric acid in the joints, usually beginning in the big toe. 
• Infectious arthritis. A general term used to describe forms of arthritis that are caused by infectious agents such as bacteria or viruses. 
• Juvenile idiopathic arthritis. The most common form of arthritis in childhood, causes pain, stiffness, swelling, and loss of function of the joints. 
• Polymyalgia rheumatica. A condition involving tendons, muscles, ligaments, and tissues around the joint that causes pain, aching, and morning stiffness in the shoulders, hips, neck, and lower back. 
• Polymyositis. A rheumatic disease that causes inflammation and weakness in the muscles. The disease may affect the whole body and cause disability.
• Scleroderma. A condition in which an excessive production of collagen leads to thickening of and damage to the skin, blood vessels, joints, and sometimes internal organs such as the lungs and kidneys.
• Spondyloarthropathies. A group of rheumatic diseases that principally affects the spine. 
• Systemic lupus erythematosus. An autoimmune disease in which the immune system attacks the body's own healthy cells and tissues.
• Tendinitis. Inflammation of tendons that is caused by overuse, injury, or a rheumatic condition and may restrict movement of nearby joints.

Here is the list of the rheumatic diseases that I have:

Arthritis

Bursitis

Fibromyalgia

Tendinitis

But I had no idea that all these other diseases were considered to be rheumatic diseases. But now I have learned and I hope others can learn as well.

Rheumatoid Arthritis Day - yesterday

Yesterday was Rheumatoid Arthritis Day. I missed it. I have a track record for missing all my medical ailment days. At least I am consistent. But RA is not a fun ailment.

Rheumatoid arthritis is different than osteoarthritis. Osteoarthritis is the kind you get from overuse of your joints - like too much tennis or running. Rheumatoid is the autoimmune kind where your body body's immune system attacks your joints. And if you are lucky like me, you get both kinds.

30 years ago patients were told to take aspirin for the pain and the focus was not on treating the disease but the symptoms. Now patients are treated aggressively so that there is less chance of deformation in your joints - translate that to less likely to need a wheel chair in the long term.

I feel somewhat knowledgeable about RA as my mother has had it since 1989. But it wasn't my body so that I didn't know that much. Clearly I wasn't walking the walk so I can't talk the talk. Once again the clear difference between being a patient and not being one.

The longer I have it, the more I realize I do not know about it. For example, I do not understand the biologics. I mean I know what they do and how they work, but I do not know about the differences between them. One thing I do know about them is that if you have had cancer, they do not like to prescribe them to you. So I may never get them. And therefore never learn much about them. 

I also know it usually starts with the small joints of your hands and feet and it is usually parallel - meaning if it affects one hand, it affects the other. Both sides of your body at the same time - just so you have more fun. I know from your hands and feet it moves to larger joints - like elbows and knees. But I am not sure about hips and shoulders as much- so that may be my osteo kicking in.

So anyway, I missed Rheumatoid Arthritis Day. So to celebrate today, I will go see my knee doctor and find out what's going on there.