Real Profiles of Rheumatoid ArthritisPhotos © Annie
Plainfield, Indiana, United States
How long have you lived with RA?
I had gotten very sick with RA around 7 years ago and finally got diagnosed 6 years ago.
What advice would you give to someone who has just been diagnosed with RA?
I would advise people no matter what age they may be is not to be scared. This is just a “speed bump” in life. By having this disease, I believe it only makes us stronger. Also, don’t let people degrade you for it. This makes you special.
Do you use any mobility aids?
How has living with RA helped to improve your life?
I’ve had numerous people came up to me and telling me that they never knew arthritis can happen in younger people. I’m ready to be an advocate for those my age to tell people that I’m not even half the population with people my age that has a form of Arthritis.
Do you have any visible signs of RA?
As of right now my fingers are turning to the side, but I have “ring straighteners” that veer them back to being straight. My fingers and toes are like normally very swollen. Thankfully, I have no more visible deformities. Unfortunately, the RA had gotten into my joints such as my shoulders and hips.
Can you please describe some of your favorite coping strategies for living with RA?
I absolutely love to cry. I believe it can be the best way to let out frustration. When I am stressed because my doctor’s appointments are not going the way that I want to go, or I just feel like a blob, I just sit in my bed and listen to music.
Can you please describe your current medical (traditional and alternative) treatments?
Currently, I am taking plaquenil, along with B-12 injections. Other than that, I like to be on less medication as possible.
Is there anything else about yourself that you would like to share?
Along with RA I was diagnosed with multiple other health problems. I was diagnosed with Sjogren’s syndrome, Lupus (yay for Rupus!), and Crohn’s disease. Thankfully I was diagnosed with RA so I can handle all these other “speed bumps”! I love to joke around about my diseases’, but I will never let them tear me down.
I’m not a big fan of superlatives, and rarely feel the need to always have to compare one thing to another (first, best, biggest, only, etc.), but I must admit that there are instances when it becomes necessary to use certain qualifiers, in order to better understand the item that is under inspection. So as I look back at my most recent flare–a flare from which I am still emerging–I can say, without a doubt, that it was my “worst” flare to date.
Why do I say so?
For days on end, I had absolutely no idea how I was still able to move. Honestly. I know–and live–the whole “mind over matter” thing, and remind myself as much on a daily basis. This is an absolute necessity, when one lives with chronic pain and disability. Over the past few days, though, I really had no idea how I was able to move…even as I, somehow, continued to do so.
In the past, it’s always taken weeks–if not months–to fall into a flare as severe as this one. This time around, it took just a matter of days. And during previous flares, I’ve usually topped out at two major peaks of disease activity, during my days of continuous pain and inflammation. During this flare, I entered into the unfamiliar territory of having three major peaks each day…just as I was coming out of one crisis, I was almost immediately going back into another one.
I think we’re all familiar with the snapping and cracking sounds that are constantly emitted from our arthritic joints, but never before had my bones produced entire musical scores that were almost as long as Beethoven’s third symphony. Even after I’d stop moving my right shoulder, it would still–almost magically–continue making sounds…and if I’d take a drink of water, my jaw would rattle for the entire duration. (And silly me, all I could think was that these sound effects would be so cool two weeks from now, on Halloween!)
When I finally got around to calling my rheumatologist Monday morning–a few days before having mistakenly thought that I could go at least another week without having to see him–my life had become a complete blur, with a few moments of clarity here and there. I really do think he lost count of the number of inflammed joints in my body (or maybe after a certain point, a specific number doesn’t even matter anymore)…and the time it took him to jot down notes after my physical evaluation, which usually takes just a few seconds, ended up taking minutes.
But despite all of the above, I’m reluctant to label this flare as my worst yet. In a weird sort of way, I actually consider it to be my best flare to date. “Best” and “flare,” how can these two words be used in the same sentence, especially from someone who doesn’t even like superlatives in the first place, you might be asking? Well, let me explain.
This was the first major flare that I’ve gotten through without an anxiety attack. (Enough said!)
I used every second of this flare to try to learn something, not only about the pain but also about myself. Instead of staying in bed and getting depressed, I decided to dress up and go out to a nice dinner. Instead of crying (and don’t get me wrong, I don’t think there is anything wrong with crying…in fact, I think it’s one of the best ways to work through certain emotions), I decided to smile and laugh…as much as I possibly could.
Whenever there was something that I could not do, I reminded myself that there was something else that I could do. When even holding my 7″ tablet to read became too painful, I listened to music…and I didn’t just listen to music that I already knew. I decided to explore something new. (And this is how, over the past week, I listened to more Jazz music than I’ve probably ever listened to in my entire life!)
I managed my expectations well. Even on Monday, after I received my corticosteroid injection, I continued to spiral downwards. I wanted to relief right then and there, but I had to remind myself that my doctor said it would take 24-48 hours to take effect. And sure enough, the worst of my flare started to subside the following day. And as I sit here two days later feeling an entirely different type of pain–the destruction that this latest flare inflicted on my body–I know that it’s going to take time to get back to where I was just a few days ago. So I’m giving myself an entire month, to rest and recover. I didn’t get here overnight, and I’m not going to get out overnight. I’m going to manage my expectations accordingly.
And during the most challenging moments of my recent crisis, I knew where to turn to for help and support, and did so without hesitation. Sometimes it was matter of making a phone call, or requesting a hug here at home, or posting something on my Facebook wall. Whatever it was, it all fell under the realm of not only knowing that I needed help, but also knowing that it was okay to ask for this help…and realizing that I was surrounded by more people than I could have ever previously imagined, who were waiting and ready to offer a helping hand and some kind words of support and encouragement.
And this is how my “worst” flare became my “best” flare ever.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Today is World Arthritis Day!
Please take a minute to learn more about Rheumatoid Arthritis.
Guide: 60-Second Guide to RA
Inflammatory arthritis is an umbrella term describing a group of autoimmune diseases that involve inflammation in the joints. Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of inflammatory arthritis a person’s joints are attacked, which can result in chronic pain and inflammation. Depending upon the specific type of inflammatory arthritis, different joints, organs and parts of the body may be affected.
The Show Us Your Hands! Inflammatory Arthritis Community Collage is a symbol of the wonderfully supportive inflammatory arthritis community that continues to grow and connect online. It acts as a reminder that we should be proud of our inflammatory arthritis hands. The Show Us Your Hands! community includes people who live with:
- Anykylosing Spondylitis
- Juvenile Idiopathic Arthritis
- Mixed Connective Tissue Disease
- Psoriatic Arthritis
- Reactive Arthritis
- Rheumatoid Arthritis
- Sjogren’s Syndrome
- Still’s Disease
- Systemic Lupus Erythematosus
Thank you for helping us raise awareness this World Arthritis Day by sharing this information with family and friends!
I’ve always been a huge fan of incorporating lifestyle measures, stress reduction, mindfulness-everything, gentle exercise (which I’ll admit, is the one item on this list where I can use the most improvement) and a healthy diet into my rheumatoid arthritis treatment plan. What is your experience with these issues and their relationship to fatigue? When my RA is most active, nothing seems to help but frequent naps…but on more mild days, I’ve found that all of the items mentioned above really help. Dr. Irwin Lim–a rheumatologist from Australia–asks the same, in the following post.
By Dr Irwin Lim, Rheumatologist
Rheumatoid arthritis, as well as the other inflammatory arthritides, are very much better treated in this day and age. And yet, it’s common to hear patients speak of tiredness or fatigue. Sometimes, this is profound and crippling.
When the disease is active, and I can detect objective signs of inflammation, the disease activity is an easy scapegoat. The more active the disease, the more systemic the symptoms. Fatigue will likely occur.
However, it’s much harder to explain when the disease seems well controlled. This is especially true if the disease is felt to be in remission.
If I cannot detect swelling of joints, and the patient denies joint symptoms, and the monitoring blood tests are all normal, how do we explain continuing fatigue?
I don’t have that answer.
Sometimes, it’s attributed to a side effect of the medications used. Sometimes, fibromyalgia is diagnosed as a coexisting problem and this is blamed.
I don’t think the answer lies in more medication.
Instead, I think lifestyle issues need to be addressed. Patients who have lived with a chronic disease, become deconditioned. Pain and stiffness reduces normal activity. Over time, muscles, tendons and ligaments become weak. In some, weight gain is an issue. Tolerance of effort reduces.
I believe it’s important to act early in the disease to encourage mindful eating and regular, targeted exercise to address these issues.
Randomised control data? I’m not sure that exists but it does seem to make common sense.
Medications can only improve one aspect of rheumatoid disease. Lifestyle measures remain an important, but unfortunately, often forgotten goal.
If you’re a patient, please share your experience with fatigue. If you’re a doctor, please share how you deal with this difficult symptom.
Dr. Irwin Lim obtained his fellowship with the Royal Australasian College of Physicians in 2003 in the specialty of Rheumatology. As director of BJC Health, Irwin developed the initial clinic in Parramatta to a multisite and multidisciplinary group. He strives to develop innovative, effective treatment solutions for patients suffering from chronic disease.
For more information, please visit www.bjchealth.com.au.
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