How Do You Deal With The Fatigue?

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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Show Us Your Hands! Join Our Board Of Directors!


Show Us Your Hands! is moving to the next level. We are beginning the process of becoming an official nonprofit charity organization in order to continue organizing creative community projects and awareness campaigns aimed at increasing public understanding of inflammatory arthritis. This means we need to grow our Board of Directors.

This is where you come in!

As a member of the Show Us Your Hands! Board of Directors, your responsibilities would include:

  • defining our Mission and ensuring we stay on course,
  • developing an annual plan and managing programs to accomplish our Mission,
  • implementing and maintaining transparent financial systems, budgets and accounting controls,
  • supporting and engaging in fundraising efforts,
  • internal board management, such as electing officers and replacing outgoing Directors,
  • establishing and overseeing special-issues committees (e.g., community outreach, volunteers, awareness programs, special events), and
  • helping promote Show Us Your Hands! and its activities to the public.

Our organizational culture is one that emphasizes proactive teamwork, respect and a sense of humor. We believe in the inflammatory arthritis community and in this organization and work hard for the love of the cause. (This is another way of saying that this is a volunteer unpaid position!)

If you are committed to working at the global grassroots level to unite and inspire people who live with inflammatory arthritis, please let us know by responding to a few questions before November 1, 2012. We will carefully review all submissions and then contact selected individuals in order to schedule brief online interviews.

Experience with finance and accounting is a plus.

Apply now to join the Show Us Your Hands! Board of Directors.

The mission of Show Us Your Hands! is to unite and inspire people who live with inflammatory arthritis. We carry out this mission through creative community projects and awareness campaigns aimed at increasing public understanding of inflammatory arthritis. Our community members, program participants, volunteers, donors, directors and staff work together to build hope for the inflammatory arthritis community, one hand at a time. For more information, please visit www.showusyourhands.org.

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Calm Before The Storm

Over the past couple of months, I’ve noticed a steady uptick in the frequency and severity of my flares. I’ve gone from having a peak every other week (this, and not true “remission,” is where I often strive to be), to once a week minimum, to my now current of almost every other day.

While many people who are feeling the same thing right now can attribute part of these changes to the weather, I’m unable to do so. Down here in the southern hemisphere, we’re experiencing some of the warmest, most pleasant, spring weather possible. Which leaves me with the fact that I have, indeed, had to cut my weekly methotrexate dose in half because of elevated liver enzymes. Hence, the increase in my disease activity.

And as my rheumatoid arthritis “comes back” (even though it never really went away), there are two things that I’ve realized.

First, I’m not experiencing any feelings of guilt or blame. In the past, I’ve always beaten myself up a bit whenever I started having more flares. I’ve always wondered if there was something that I was/wasn’t doing to make my condition worse. Now, I’m a huge advocate of taking care of myself as much as possible, and I’ve never limited myself to just pharmaceutical treatments, but over the years I’ve learned that no matter how hard I try, sometimes I’m not going to be able to “control” my rheumatoid arthritis. It’s just going to take its course, whether I want to or not. So rather than spending my oh-so-precious limited energy on trying to prevent such flares, or on trying to figure out what caused this current flare (a game I played for so many years), now I just sit back and relax as much as I can…increased disease activity or no.

Second, I’ve realized that each and every new flare is an opportunity to learn something new; to figure out how to better cope with the pain and disability.

Yesterday I was flaring much more than usual. My right hip–*the* one joint in my body which up to now has not been affected by my RA–would occasionally scream out in pain midstep. The soles of both feet felt like a hot iron was being pressed against them, and…oh well, you get the point. The inflammatory process was moving full sail ahead, and I was in a lot of pain. And while I knew I was flaring, I mentally refused to declare as much…not in an attempt to deny what was going on, but as a way to focus on something else, despite the pain that I was experiencing.

As I sat there, reading, simultaneously watching a football game on my computer while watching a movie on the television screen, surfing the Internet, and so on (not so much in any panic or distraction mode, as this is what I do most evenings)–even having left my bed to spend time in the living room (I love my bed, but sometimes I just get absolutely tired of spending so much time there), a funny thought crossed my mind, as I somehow managed to have a relatively “normal” evening. All at once, I somehow managed to push myself forward, hold myself back, completely accept the pain, and not focus at all on the pain.

I chuckled to myself. As many personal successes as I’ve had in my life, such as getting my masters degree from Harvard University, etc. (and here I’m referring to those “visible” successes that are there for so many others to see, things which in all honesty I’ve never been too into), they come *nowhere* close to many of the private successes that I’ve been able to experience during my journey with chronic pain…and highest on this list has to be the ability to maintain control of my thoughts, and to feel calm and balanced, no matter how bad the pain might be.

I doubt that there are many other personal accomplishments, which can rank higher than this.

As I got into bed, having already started to fall asleep in front of the television, I noticed that the pain was there, hovering, ready to take over. I knew what I was in for, and there was absolutely no way of avoiding it. For the umpteenth time I sensed that (overwhelming) fear–that “oh my god, what do I do now?”–floating around in my head. I did, however, something that I don’t normally do when the pain is that bad. I absolutely refused to go down the path of feeling scared and anxious, of wanting the pain to go away.

So I invited it in. Literally. I told my pain that it was welcome in my body.

And just like that, the fear passed. Within a couple of minutes, I was soundly asleep.

The storm was coming, but I was calm.

Success.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Vicky Besley

Real Profiles of Rheumatoid Arthritis
Photos © Vicky Besley

Name?

Vicky Besley

Age?

27

Location?

Worcestershire, England

How long have you lived with RA?

4 years.

What advice would you give to someone who has just been diagnosed with RA?

Make sure you are comfortable with your rheumatologist as it makes the whole process a lot easier. Don’t be scared to ask lots of questions no matter how trivial but most importantly don’t be afraid to ask for help.

Do you use any mobility aids?

Yes I have an electric wheelchair for in the house, a manual wheelchair for going outside in so people can push me. They were hard to accept but they mean I can still do things I enjoy.

How has living with RA helped to improve your life?

Its made me realise how strong I actually am! Its made me stop and enjoy things more and reminded me to have fun it lifts your spirits when you have something to look forward to.

Do you have any visible signs of RA?

Yes my hands are bent over, my left knee has fluid and often swells.

Can you please describe some of your favorite coping strategies for living with RA?

To just smile and get on with it, I tell myself I can get through this, a smile helps.

Can you please describe your current medical (traditional and alternative) treatments?

I have Reiki every week which helps lower my pain levels, also pain killers nothing further (see below).

Is there anything else about yourself that you would like to share?

My treatment has been affected by the fact i also have a heart defect called Tetralogy of Fallot which has had an effect on what treatment I can have and also the level of pain killers I can take.

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