Things I wish I Knew 10 Years Ago about

Rheumatoid Arthritis.

It’s not just about your joints.

Rheumatoid Arthritis is named incorrectly. It is an autoimmune disease that causes inflammation that affects the entire body. Many people now refer to it as Rheumatoid Disease. This also helps to distinguish it from your friend’s old basketball injury or your Grandma’s achy knees. That’s Osteoarthritis, the wear and tear type of joint problem.

Rheumatoid Disease attacks our entire bodies. Chronic inflammation affects tendons (tendonitis), bursa (bursitis), blood vessels (vasculitis), heart, lungs, kidneys and nerves. It increases your chance of developing Cardiovascular Disease, Diabetes Mellitus, Depression, Lung Cancer, Lymphoma, Dementia and more. It is generally accepted that Rheumatoid Arthritis shortens a patient’s life span by 10-15 years.

Don’t expect to see lots of swollen hot joints.

Not having red swollen joints is our goal.  We want to avoid that happening as much as possible.  Once the damage is done, there is no reversing it. Sometimes friends and family want to see something dramatic to go with all the pain you are experiencing. We can have lots of pain with very little to see on the outside. Don’t feel guilty because you have pain and there is nothing to see. The pain and damage are all going on in the inside.

It’s not your fault.

No one knows for sure what causes Rheumatoid Disease. It’s not because you could loose a few pounds or ate the wrong vegetables. Some studies show RD runs in families. We have 4 people in my family with Rheumatoid. People often give advice like drinking vinegar, taking herbs or elimination diets. If any of those things really worked, none of us would be suffering day in and day out. They may help some people but they are certainly not a cure.

Listen to your body.

Some things routinely cause Rheumatoid flares in patients but everyone is a little different. Pay attention. What was going on just before this flare? Did you decide to mulch the garden after weeks of not doing much? Sudden strenuous exercise will cause a flare. Bad news at work? Stress certainly will set off a flare. Not getting enough good quality sleep? Inadequate amounts of sleep always set me off.    Search for patterns and trends and then you can avoid those situations as best as you can. I keep a journal. I make notes and try to get to know my personal Rheumatoid as best as I can.

Find the right Rheumatologist.

You and your Rheumatologist are going to be in a long term relationship. You need a doctor that really listens and gets you. If they don’t, move on. Make sure you have input about your therapy. Rheumatoid therapies are complicated. Ask questions and read up on things. Make sure you are getting your information from a reliable medical source. Still confused? Then it’s time to talk to your doctor. If you don’t trust your doctor’s advice or judgment, its time for a new doctor.

Autoimmune Diseases often come in clusters.

There are more Autoimmune Diseases than Rheumatoid. There is Lupus, Sjogren’s Syndrome, Vascutlitis, Raynaud’s Disease, Hashimoto’s Thyroiditis, Celiac, Schleroderma and more. It is common for a patient to have more than one of these conditions. Once Rheumatoid Disease starts, over time it can morph into more autoimmune conditions.

The medications can be scary.

If you read the package insert to even everyday drugs, you might think twice before you took them. RD drugs are even more scary than most. The good news is that we now have many drugs to treat Rheumatoid Disease. If you have a problem, you can just try another. They are not perfect but they are pretty amazing. It was not that long ago when Rheumatologists had little more than aspirin and steroids to offer their patients. Get to know your pharmacist. Talk to your doctor. They are all there to help.

Don’t spend too much time in the online Rheumatoid Support Groups.

Online support groups can be really helpful for emotional support but not for medical information. People tend to post stories about unusually bad experiences with their medications or misinformation that they read somewhere else on the web.  The patients doing great and having no side effects aren’t the ones usually posting. They can make you feel like Rheumatoid is a hopeless cycle of pain and loneliness. Reading too much about pain and frustration in those support groups on a bad day can make you even more anxious and depressed.  A positive and optimistic attitude is sometimes the only thing that gets you through a really bad day.

Get Counseling.

If you are struggling with accepting and coping with your RD, get real help. Chronic inflammation causes the release of cytokines into our bodies. Cytokines cross into our nervous systems and are thought to cause depression. It’s not just you, it’s the disease. Find a good councilor who understands chronic pain and really gets you. Don’t be afraid to try a few. A good councilor can feel like a good friend or a safety net. Find the right person for you. It will probably be another long term relationship in your life with Rheumatoid Disease.

The attempted suicide rate of rheumatoid patients is 46% higher than people without RD. This is important stuff. Talk to your family doctor or Rheumatologist. Antidepressants can make a huge difference and some even help with pain. Counseling is often offered at your workplace or at local practices that have sliding scale billing if you have to pay in cash. Reach out to your doctors, they may know just where to send you. I wish I had acted on this tip years ago.

Don’t rule out other things that help.

I’ve struggled with Rheumatoid Disease for over 30 years. I’ve tried a lot of things. Here are some of the things that have helped me.

  • Meditation. It’s not nearly as exotic or hard as it sounds. It helps with pain management, depression and anxiety. I find that stress is one of my biggest triggers for a RD flare. Meditation is my “go to” when it comes to stress and anxiety. Although I think taking a class works best, it’s easy to find lots of YouTube videos and free apps that will lead you through it. (I love my teacher Aleeze Moss’s videos)
  • Floating. Unfortunately, floating centers are not available everywhere. I am lucky to have one close by. Floating is getting into a tank of super saturated Magnesium Chloride Solution (Epson Salt). It makes you so buoyant, you can’t sink. You can turn off the lights or music if you want complete sensory deprivation. You can even just fall asleep. Most people go because it feels a lot like meditation. I go for that and in addition, soaking your entire body in Epsom Salt for 60-90 minutes pulls all the inflammation out of my body. I feel better for days! (I use Float SNJ here in South Jersey)
  • Aqua Therapy. I joined a local hospital associated gym that offers physical therapy in a warm water pool. I grab a floatation noodle and just putter around in the warm water. It loosens my stiff joints and just feels good. (I use Virtua Health just around the corner)
  • Dietary Supplements. Not all things “Natural” are safe. Dietary supplements are not regulated by the FDA and can pretty much contain anything or nothing. They have side effects just like tradition pharmaceuticals and some can even be life threatening. Check with your doctor of pharmacist before starting and please never take more than the recommended dosage. With that said, I take Tumeric, Krill Oil, Vit. D and B12. They can’t hurt and they might help. CBD oil is very hot right now too. It’s a complicated subject and may be a good subject for another blog post.
  • You might benefit from using a cane. I have fallen several times and a cane gives me more stability. Walking in the city or any uneven area is a fall waiting to happen for me. I hated using it at first. I felt like the whole world was watching me. I searched for a long while and found an incredibly cool cane on Etsy. Now people don’t ask why I am using the cane, they just say Wow, where did you find that amazing cane?

Own It.  I got in an elevator a few months back with what appeared to be a professional businessman. He made a comment about me taking the elevator up just one flight. I guess he was in a hurry to get to work on the tenth floor and seeing that I am a bit overweight, he probably just assumed I was just being lazy. I immediately responded that I have Rheumatoid Disease and the pain and stiffness are at their worst early in the morning. He quickly changed his attitude and murmured that he was only joking. Not all diseases can be easily seen. Speak up!  I hope that man will think twice before he makes a comment like that again and it made me feel good to break it down for him!