Posts Tagged ‘chronic pain’


A fellow blogger recently wrote about the correlation between chronic pain caused by her Still’s Disease and her monthly visitor… and this really got me thinking. What is the correlation between lady hormones and Rheumatoid Arthritis (RA) pain? Here are a few things we already know.

  • RA affects three times as many women as it does men
  • Many women begin feeling their first RA symptoms after giving birth

So I started keeping track of my own symptoms and doing some additional online research.

Rheumatoid Arthritis Pain and Lady Hormones

It turns out I DO feel absolutely terrible just before and after aunt flow is in town. I mean most girls I know might get bitchy or some occasional cramps before the painter is in, but I straight up can’t walk or function. It just isn’t right!

And if my personal story isn’t convincing enough,  Medicine.net says the following.

Researchers are finding that the immune system is influenced by signals from the female reproductive hormones. It seems that the levels of hormones, such as estrogen and testosterone, as well as changes in these levels can promote autoimmunity. “Autoimmunity” is a condition whereby the immune system (which normally wards off foreign invaders of the body, such as infections) turns and attacks the body’s own tissues, such as skin, joints, liver, lungs, etc. Autoimmune diseases typically feature inflammation of various tissues of the body.

Autoimmune diseases are also characterized by a disorder of the immune system with the abnormal production of antibodies (autoantibodies) that are directed against the tissues of the body. Examples of autoimmune diseases include not only those that feature inflammation in the joints, such as systemic lupus erythematosus, Sjogren’s syndrome, and rheumatoid arthritis, but also disease of other organs, such as occurs in Hashimoto’s thyroiditis and juvenile diabetes mellitus.

When women report only having symptoms or having increased symptoms at monthly intervals that coincide with their menstrual periods, many doctors will recommend adjusting or adding medication to reduce inflammation selectively just before and during the period. The rationale for this short-term adjustment is that the immune system may be temporarily more active as women’s hormone levels change during their periods. The additional medication can frequently help to avoid the symptom roller coaster that affects many women with arthritis.

This leads me to question why not one single Rheumatologist, or OBGYN for that matter has ever discussed the correlation between hormones and RA with me? It seems clear that a relationship between the two exists. If you haven’t already, do yourself a favor and start tracking your monthly friend to see if you find a pattern. I’d love to hear your feedback.


I came across this cartoon on RA Guy’s blog this morning and thought it was so right on that I had to share with my readers too. I can’t tell you how many times I’ve felt this way.

What’s wrong with this picture?

“And before anyone gets upset, I am not trying to compare the diseases mentioned above, all of which are serious. I am merely trying to make a point about the uniformed comments and lack of awareness that RA Superheroes encounter on a regular basis. We have all received these responses, plus many others, at one time or another during our journey through chronic pain and debilitating inflammation” – RA Guy


If I randomly said the word “arthritis” to someone, they would most likely conjure up an image of a grandparent complaining about achy joints. I for one used to always think of grandma Petrillo from the Golden Girls and that awful, menthol, medicinal scent of  joint creams like icy hot. 

Most people don’t hear the word “arthritis” and think of a twenty something person like myself. Or worse yet, a small child. Did you know that there are approximately 300,000 kids in the US who have been diagnosed with some form of arthritis? In fact, there are lots of these kids who spend most of their childhood in and out of hospitals. Many of them occupy their summers healing from joint replacement surgery and spend what would be there after school playtime getting medical infusions at their doctor’s office.

There is no cure for arthritis just as there is no sound theory as to why people get the many forms of arthritis. Some evidence indicates that getting arthritis may be linked to hereditary causes while some research points to environmental factors. 

Wonderful organizations like the Arthritis National Research Foundation are working towards completely eliminating arthritis someday. The Arthritis National Research Foundation (ANRF) actually funds scientists to cure arthritis by discovering the causes of arthritis and its related diseases including osteoarthritis, juvenile arthritis, rheumatoid arthritis, lupus and other autoimmune diseases. In addition to funding scientific programs, this organization also runs community focused programs that help generate awareness for all of the different forms of arthritis like the ones that affect kids.

View the video below to meet a little girl named Bailey who is the ANRF’s hero. Children like Bailey give me the inspiration to keep writing and sharing the stories of everyone affected by arthritis.

God bless children like Bailey. Words cannot describe how much my heart goes out to this little girl and her family.


In the midst of another busy day at work yesterday, the newest Chronic Babe newsletter written by Editrix Jenni happened to pop into my inbox. I rarely have the time to read these while working, but desperately needed a minute to step away from the 25,000 line Excel spreadsheet I was analyzing before my eyes glazed over and my head exploded. I don’t know how many of you have come into contact with Chronic Babe’s website or newsletters before, but let me tell you… they are simply amazing!

The Chronic Babe site is designed to give women living with chronic diseases like Rheumatoid Arthritis, a spot to connect via laughter, shared medical tips, career successes, embarrassing stories, boy gossip and more. Ultimately, Chronic Babe provides readers with an escape to a fun place where girls living with illnesses are not alone. And it does all of this while making these women feel sexy and proud.

Here’s a snip-it from yesterday’s newsletter. This is for all you sexy, wonderful sick girls out there! I hope you find Jenni’s writing as powerful as I do.

 

“The other day I tallied the number of doctor appointments I had in one week: 5. Then I thought about how many business calls were piggybacked on either side of those appointments, and how for each call I had to put on my best business face (voice!) and not let on that I wasn’t feeling well. Then I thought about the deadlines I met, the challenging conversations I had, the time I spent patiently explaining rheumatoid arthritis (changed from fibromyalgia) a to a new friend who was confused, the numerous bus rides I took while in huge pain. For a moment I was tempted to look at the tally of everything and throw a big ol’ pity party. Why me? Why do I have to deal with this big pile of awful? And why do I have to show up for everything with a great attitude, being helpful when I’m exhausted and compassionate toward others when *I’m* the one in pain?

Why? Because I’m brave. Yup, I said it: I’m brave.

I’m not trying to be braggy here. I’m not puffing myself up. I’m just being real with you. I’m brave. SuperBrave. Every day—in spite of pain, fatigue, headaches, exhaustion, cramps, stomach irritation, blurry eyesight, dizziness, memory problems and, did I mention, pain—I show up for my life. I work, I maintain relationships, I put on makeup and cute clothes, I volunteer in my community, I nurture my creativity. And I do everything I can to maintain my health, including (but certainly not limited to) exercising, eating right, practicing sleep hygiene, meditating, praying, taking my meds on schedule, asking for help, doing yoga, journaling and following doctors’ orders. I am totally awesome!

Guess what? You are too! You wouldn’t be reading this if you weren’t trying to be the best Babe you can be in spite of illness. I bet you do a ton of things to take good care of yourself. I bet you do a ton of things to care for others as well. And I bet there are people in your life who don’t have a clue how hard you work to keep it all together, to THRIVE and not just survive. I’m not just guessing here; I get your emails every day, talk to you on the ChronicBabe Forum, meet you at events. I see you out there! You are some of the bravest, most hard-working, inspiring folks I’ve ever known. And it’s YOUR bravery that keeps me motivated on my worst days.”

 

So to all my RA affected readers out there, remember that you are totally awesome!! I believe that there isn’t much out there that you can’t do. Stay well and stay active because while your body sometimes gives up on you, you can’t give in to the disease by giving up on yourself.

Visit chronicbabe.com to read other inspirational blogs and to sign up for Jenni’s newsletter. I hope Jenni’s newsletter brightens your day like it does mine.


According to Reuters Health, recent studies support that moderate drinking may slow the progression of Rheumatoid Arthritis. A study of 2,908 Swiss RA patients followed for 4 years indicated less joint damage amongst people consuming one drink per day than their non-drinking counterparts. Who would have thought? I’ve been trying to convince my Rheumatologist to pass me the bottle for years! Can Reuters please call her ASAP? 

To drink or not to drink? That IS the question. All jokes aside, this issue is overwhelmingly confusing.  We’ve heard both sides of the debate a million times. Most rheumatologists will tell you that alcohol will poison you to death while many scientific studies seem to prove otherwise. OK, that’s a bit dramatic but seriously, which is it?! If I’m working out regularly and eating my fruits and veggies, can an innocent glass of wine with dinner be all that terrible?

SOURCE: http://www.reuters.com/article/idUSTRE62O2TZ20100325


Pain can be a major drain

According to the Mayo clinic definition, Rheumatoid Arthritis is an autoimmune disorder which “occurs when your immune system mistakenly attacks your own body’s tissues. In addition to causing joint problems, rheumatoid arthritis can also affect your whole body with fevers and fatigue”.
Let’s think about this for a moment… That means my immune system really attacks my own body’s tissues? Yes, once you are diagnosed with this debilitating disease, you learn that your body will constantly fight YOU for the rest of your life. Imagine that… Your body has no control of your body. Scary stuff.
In my case, pain moves throughout different joints in my body, but it does so symmetrically. So if my left wrist is in agonizing pain, my right wrist is sympathetic and the pain in my right wrist becomes excruciating too. The same is true in my toes, my fingers and most often.. my hips. My hips burn constantly. When my disease flares up in my hips, knees or ankles, I can barely walk let alone make my way up the stairs to my second floor bedroom.  When my fingers are affected, it’s impossible for me to wash my hair, brush my teeth or button my own fly. Thank God leggings are back in style!
While it’s true that research and medicine have come a LONG LONG way over the past 5-10 years, they haven’t yet come far enough.  I started trying various drug cocktails about five years ago now. From Methotrexate to Prednisone to Humira to Enbrel to Sulfasalazine to Naproxen to Vicodin to Celebrex and still no 100% relief?! Unbelievable. My current flavor of the week is a combination of Humira, Methotrexate and Sulfasalazine. Who knows what’s next? My doctor recently mentioned Orencia which is given through transfusions once a month. Sure, I’ll find the time to spend an entire day at the doctor’s office once a month between working all day and going to school in the evenings…
All of that being said, I’m starting to get the feeling that I’ve painted myself as an absolute pessimist between my last two blog entries. I promise you dear readers, that is not the case. In fact, it’s amazing what happens to people when God throws some obstacles in their way. Nothing is impossible! More on that later.

 


Rheumatoid Arthritis is one of those infamous invisible diseases…if you’re lucky. If you’re lucky, the doctors diagnose you in a timely manor so physical aspects of the disease don’t begin to mutilate your body. If you’re not lucky, your fingers and toes begin to curl up and take on a new form which you cannot control. It repulses you to look at your own joints and limbs. You want to crawl into bed and cover your head without ever making a public appearance again. Unfortunately you can’t do this as you’re a single 23 year old girl with bills to pay.

You just graduated college so you are thousands of dollars in debt and living in an urban apartment that costs more than a half of your monthly salary. Just weeks ago you were jet skiing at a friend’s weekend cabin without a care in the world.  The sun was shining down upon you, your hair was blowing wild in the wind and all you could think about was the promise of your bright future. You just landed your dream job at an advertising agency making a less than satisfactory salary, but hey you’re really MAKING it, right? That’s how it seems until you wake up one day, unable to move your shoulder. When you try to squeeze your hand or fingers together, you cry. You’re such a strong women, but you cry when squeezing your fingers together? What’s wrong with you? Why are you acting so weak?

The orthopedic specialist says it’s just tendonitis, wraps you in a shoulder splint and tells you to take it easy for a few weeks. The pain becomes so unbearable but you push back those tears, go to work and sit at your desk like a good worker bee for 55 hours a week. You try aimlessly to type with one hand for days and then weeks but the pain doesn’t end, it starts spreading. Next your feet start going numb, both of them. You can barely get out of bed in the morning because your feet start burning to the point that you have to peep out of the sheets to make sure there hasn’t been a house fire in the night. The podiatrist says it’s just plantar fasciitis (an inflammatory foot disease which comes and goes, causing minor pain and swelling) due to all the jogging in the months and years prior. It’ll go away, the doctors says, just give it some time. At this point, you have your shoulder in a splint and you’re limping at the same time. How did you go from jogging and jet skiing to this invalid of a person at 23 years old in just a few weeks? 

Six months pass and you are juggled from physician to specialist to orthopedic to podiatrist when someone finally decides to take your blood and test your Rheumatoid factor. They finally say you’ve been diagnosed with Rheumatoid arthritis. They say that this explains all of the pain and curling of your joints. Arthritis? Isn’t that an old person’s disease? I think my grandmother has arthritis in her ankle… Why does my whole body hurt? What does Rheumatoid mean? How did this happen? What did I do wrong? I am too young for a chronic disease. There is no cure? Will I feel like this for the rest of my life? No one in my family has Rheumatoid arthritis. Those are just a few of the thousand thoughts that cross your mind the first time you hear your diagnoses. This is when you realize that your life is about to change… forever.

This blog is the first of a series on what it’s like to be diagnosed with Rheumatoid Arthritis.