Rheumatoid is not Arthritis but a Systemic Disease

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Most people when they think of Rheumatoid Arthritis think of arthritis. It’s not. It’s a systemic autoimmune disease that causes arthritis and..A whole lot more. It attacks the heart, the lungs, the eyes. You name it in our bodies, it can be attacked. Most people in the world and in the medical world don’t know this.

If any of you are living with this or any autoimmune disease (Most will have more then one) you will already know that you will be seen as a hypochondriac often. When you list all you’re going through to a doc, you will hear things like, “That’s not my department.” I’ve heard that one often. Well in reality it is their department when they are Rheumatologists, and Rheumatoid affects more than your joints. Much more.

I follow another site called Rheumatoid Warrior. This lady lives with RD. She’s written a book on her experience with this battle. It’s free on Amazon today. I’ve started reading it and wow! It sure makes me not feel so alone in this.

Her website has tons of stories of what people have battled beyond the arthritis part of this disease.  RA Warrior is fighting to have the name changed to Rheumatoid Disease rather than Rheumatoid Arthritis. It’s so misunderstood.

Here is the link to the book she’s written. https://www.amazon.com/Rheumatoid-Arthritis-Unmasked-Dangers-Disease-ebook/dp/B074CLX8TT/ref=sr_1_1?ie=UTF8&qid=1509374704&sr=8-1&keywords=rheumatoid+arthritis+unmasked

I’m not being paid in anyway. I’m just bringing some awareness and help where I can, since I feel very alone in this battle. 

I would love if any of you reading this would list the symptoms you have that you may find strange. They’re likely related to autoimmune disease. Here are a few of mine to get you started.

  • Trouble breathing and or asthma
  • Raynauds (Circulation is cut off in fingers, toes, nose/ears) 
  • Brain fog- trouble finishing sentences, bad memory
  • Painful tongue/swollen taste buds
  • Red burning blushing face (Not skin, nerve related)
  • Fatigue that’s more extreme then a normal tired
  • Epilepsy
  • Interstitial Cystitis (Have since lost my bladder)
  • Gut issues
  • Dry eyes/mouth/nose
  • Mouth sores
  • Fevers
  • Infections out of nowhere
  • Terrible joint pain/swelling/redness (Feels like joints are badly sprained)
  • Migraines
  • Auras 
  • Rashes
  • Extreme itchiness without a rash
  • Kidney or other organ involvement
  • Restless leg syndrome

These are just some of what I battle not all at the same time. Some things will come and go. Some will come and stay. Some start slow and progress over time. This disease is relentless and deadly and so very misunderstood. This disease and others like it are progressive.

You are not alone. Those of you battling it know exactly what you’re up against. Those not battling it, you’re lucky please be kind. We know that you can’t understand unless you live it, but we’d hope that at least you’d be empathetic. It’s a hard enough fight without having to deal with criticism, or skepticism, or being told how to heal it.

Just because we don’t look sick doesn’t mean we aren’t. We’re good a faking it. But we fake being well, to please everyone else. We want to fit in, keep up and be a part of your lives but this disease does not allow us too. Please don’t give up on us. Our immune systems are constantly attacking us. The pain and exhaustion that causes is often unbearable, and would put the average person in bed. We keep going.

The meds we have to take while they help in ways, also have their own often horrible side effects. So there’s that battle too.

And one more thing. If you see a person parking in a handicapped parking spot that doesn’t look sick, don’t assume they aren’t. There are so many debilitating invisible illnesses out there.

If you’re curious ask. I love when people ask me, because it gives me a chance to educate. I thank strangers when they ask.

So again if you’re battling any autoimmune disease please list symptoms that you have even if you think they may not be related to the disease. Let’s support each other and maybe we won’t feel so alone.

Sunny Days & Support,

CrankyPants

 

 

 

 

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13 thoughts on “Rheumatoid is not Arthritis but a Systemic Disease

  1. I have some of those symptoms you list, but have never been diagnosed with an autoimmune illness. Who knows, maybe this is why I like naps so much. Or maybe this just explains why it’s so hard to get a diagnosis–those who aren’t autoimmune can have similarities to those who are. It must be nice reading about someone with same stuff you have, and who has researched it very well. I will keep in mind from now on that rheumatoid arthritis is much more than arthritis.

    Liked by 1 person

    1. What symptoms do you have if you’re willing to share them, I’d love to hear. It is definitely a complicated disease any autoimmune disease. It’s why it’s so hard to diagnose. A lot of people write off their symptoms as, “I’m getting older, or I worked to hard, or moved/slept the wrong way. It wasn’t until the pain became really debilitating for me that I looked for help.

      Liked by 1 person

      1. Well, I’ve been a nap-lover all my life (always had a fatigue issue). I get frequent sinus headaches. Have had problems with kidney stones. Have chronic neck and shoulder pain. Nearly died of pneumonia several times when I was a kid. And I’m going bald.

        I’ve complained about some of these things to doctors from time-to-time, then they’ve run all kinds of tests and found nothing wrong. I’ve given up complaining. I figure bad health is just part of the human condition.

        But perhaps if I ever get as bad as you, I’ll complain again, and maybe some genius doctor will come up with a diagnosis. A diagnosis that might be in the ballpark, but somewhat off-target. Just like you have seemed to experience.

        Sigh.

        Liked by 1 person

      2. Never heard of those things. Maybe I’ll do that one day, but I’m worried it will send up a red flag to my doctor and then he’ll want to test me for other things, also. I hate tests! You really know how to scare a guy on Halloween.

        Liked by 1 person

  2. It seems with autoimmune diseases, especially systemic, the more you learn, the more there is a target on your back that no one can see or understand. But knowledge is power, even if it’s not complete or is medically evasive. The more you know about yourself; the more you learn about your individual reactions to a full systemic, all-encompassing degradation of your biologic systems; the more you can fight back. Knowledge is strength, and you are a fighter! Thanks for sharing.

    Liked by 1 person

    1. So true. I’m so glad I knew about all the meds before I got diagnosed. I could make an educated choice to stay clear of prednisone. Docs never would have told me what to expect. They never have on any of the other meds. Phew! Knowledge is definitely power.

      Liked by 1 person

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