Living with chronic disease is all about supportive relationships


Is RA worse than OA?

I recently received an email from a husband who was concerned about his wife who was diagnosed with rheumatoid arthritis (RA).  He wondered if it was both to have both RA and osteoarthritis and which one of the two was worst.

Here is my response:

I also have RA and I was diagnosed about three years ago. First, Rheumatoid Arthritis (RA) is worse than osteoarthritis (OA) and it is not usual for someone to have both conditions. Both RA and OA are serious but they have both have the possibility of being manageable. RA can also be very serious.  This is because RA is a long term disease that leads to inflammation of the joints and surrounding tissues.  It can also affect the organs.

The cause of RA is not known but infection, genes, and hormones are believed to be contributors to the disease.  It is an autoimmune disease where the body’s immune system attacks itself.  A normal immune system fights off infections and viruses but with autoimmune diseases, the body attacks healthy cells because it mistakes them for unhealthy ones.   RA can happen at any age and women are more often affected than men.

Doctors believe that RA affects joints on both sides equally but that there are cases where one side is affected and the other not, or one side of the body is worse. However, at some point, it does eventually affect both sides.  The wrists, fingers, knees, feet, and ankles are most commonly but other joints can be affected. The course and the severity differs of the disease differs from person to person.

The disease often begins slowly with symptoms similar to those in other illnesses.  These include fatigue, loss of appetite, low grade fever, swollen glands, and weakness.    Eventually, joint pain appears.  This includes morning stiffness that lasts more than one hour. Joints can be warm, tender and stiff when not used for as little as an hour.  Joints are often swollen and feel warm and boggy/spongy to touch.  Over time, joints can lose range of motion and become deformed.

Other symptoms include chest pain when taking a breath (pleurisy), eye burning, itching, dryness, and discharge, nodules under skin (these indicate that the disease is severe), and numbness, tingling, or burning in hands and feet.  Joint destruction may happen within 1 to 2 years after the disease appears.

RA usually requires lifelong treatment including medications, physical therapy, exercises, education and possibly surgery.  Early and aggressive treatment for RA can delay joint destruction.  Medications include diseasing modifying drugs, anti-inflammatory medications, anti-malarial drugs, corticosteroids, and biologic agents.

Again, the course of RA differs from person to person.  For some patients, the disease becomes less aggressive over time and symptoms improve.  Other people develop a more severe form the disease.  People with a rheumatoid factor, an anti-CCP antibody, or subcutaneous nodules seem to develop a more severe form of the disease.  Persons who develop the disease at younger ages seem to get worse more quickly.  Treatment has improved in the last 10 years.  Many people continue to work fulltime.  I am not saying that life with RA is not a painful – it is a very painful disease and it can make life difficult.  After several years, ten percent of persons with RA are severely disabled and unable to do simple daily tasks such as washing, dressing, and eating.

RA can cause severe complications for some people.  It is not only a disease of joint destruction.  It can also involve all organs. More severe problems include anemia due to failure of the bone marrow to produce enough new blood cells, damage to lungs, injury to the spinal cord when the cervical spine becomes unstable from the RA, Rheumatoid vasculitis (inflammation of the blood vessels), which can lead to skin ulcers and infections, bleeding stomach ulcers, and nerve problems that cause pain, numbness, and swelling and inflammation of the outer lining of the heart (percarditis) and the heart muscle (mycarditis).   Both percarditis and mycarditis lead to congestive heart failure.   Sjogen’s syndrome and fibromyalgia are secondary conditions that come after an RA diagnosis and further aggravate RA symptoms.   Moreover, RA treatments are strong and cause some major side effects.

It is very possible for RA patients to have normal lives – not easy, but very possible.  It depends on the degree to which RA affects a person’s daily activities and how well that person can hope.  Coping strategies are important but it takes time to find ways that work for each person.  There is no one solution for all approach with RA.  Patients must take control of their health, work their doctors, and work on a trial and error approach to find what best works for them.  It is also important to know limits: i.e., resting when you are tired because RA can make a person prone to fatigue and muscle weakness.  It is also important to connect with others and to make time for oneself.

Why I Advocate

One of things I often wonder about is whether spouses and significant others actually understand the physical and emotional tolls that that RA and other chronic pain bring to the sufferer and their relationships.   As sufferers, we all know that chronic disease can destroy a marriage, a relationship or a friendship.   We all have come across people that just don’t understand.  It is one of the reasons I keep going even one I can’t because I don’t really have time to deal with people who just don’t get it.  In fact, I am not alone here.  We are all faced with the pressure of appearing healthy when we are not.

I don’t want RA or fibromyalgia to limit me but they are both pretty serious and painful diseases.  They affect every aspect my life.  I have lost my share of friendships and other relationships as a result of my health.  As a result, I have learned to take a proactive view on life with these conditions.  I am not alone and one thing I know that is that there are people in my life who actually are willing to make the effort to understand.  Moreover, I have learned to forget about the ones that don’t.

While for me, it was not that easy, I wish for others that relationships don’t end because of disease.  I wish that spouses, significant others, family members and friends would make the effort to understand.  That is why I advocate – not just for me but for all of you who need support and understanding. No one has to go at this alone.  In addition, I advocate because I want to set an example for my children that relationships are not just about convenience but about truly being there for the people we love.

My goals didn’t seem so clear in the beginning but they become so much clearer as my watched my brother struggle with a terminal illness.  I saw what it did to him on both an emotional and a physical level and all I could do was stand by and hold his hand.  While I know that it may have not been enough, it was enough for him so that he didn’t feel alone.  Loneliness when you are chronically or terminally ill is a powerful thing.  So, for those of you are fortunate enough to be healthy, know that support is the greatest gift you can offer. It means the difference between happiness and sadness. It is what love is really and truly about.

I never knew how important love was until my siblings and I held on to one another through my brother’s illness and his passing.   Love means you won’t have regrets.  My relationship with my brother wasn’t as strong or as close as it should have been but he became sick, it was like we knew what we had to do so that we wouldn’t have regrets.  While I wished that he and I had a better relationship before he became sick, we made up for it the last two months of his life.  I am very grateful to have had that chance and I know that so many don’t.  Supporting those you love, especially when they are ill, is the best gift you can offer to them and that you can offer to yourself.

***If you a question related to RA, Fibro or chronic illness you would like me to answer, please feel free to send me an email to livingit-lovingit@live.com and I would be happy to answer your question.  Be sure to put “Blog Question” in the subject line so that it does not end up in my junk folder.

 

Today is Fibromyalgia Awareness Day


This year’s theme is “Fibromyalgia Affects Everyone” and the goal this is to emphasize the sweeping effects of the disease – “from broken lives the economic costs to patients and society.” The NFA’s Walk for FAME (Fibromyalgia Awareness Means Everything) is the most significant aspect of this campaign for awareness. 
Other 2009 Awareness Day Campaign Elements include: NFA’s Weekly Live Podcasts (click here) NFA’s 2nd Annual Walk of FAME (Fibromyalgia Awareness Means Everything) Virtual Walker Opportunity Walk of FAME Drawing Media and Community Outreach (click here for sample press release) Candlelight Observance (click here) Proclamation Program (click here) “Fibromyalgia Affects Everyone” Events (i.e. seminars, car shows) Pledge to Care Program (click here) Awareness Day Products (click here) Post-Event Slide Show (send us your pictures) In addition to participating in the walk, here are other things participants can do: Participate as a “virtual” team or walker by signing up on NFA’s Walk of FAME website and encourage your friends and family members to support you or join your team
Post National Fibromyalgia Awareness Day information on blogs, discussion boards and social network sites, such as Facebook and MySpace (as I have done here) Host an alternative awareness event and post your event on NFA’s Community Events Page (click here) Participate in the 2009 Proclamation/State Resolution program (click here) Share your personal story with the media There are local events being held all over the country. For more information, click HERE.
Some Facts about Fibromyalgia (FM) Fibromyalgia is one of the most common pain condition diseases. It is believed that 10 million people in the United States are affected by the condition. Moreover, it is estimated that 3-6 percent of the world’s population is affected as well. 75 to 90 percent of FM suffers are women, but the disease also effects men and children of all ages and ethnic groups. The disorder is common in families, “among siblings, mothers and their children.” Diagnoses are usually made between ages 20 to 50 and incidents/diagnoses rise with age.
Symptoms of Fibromyalgia include: chronic widespread body pain, which is the primary symptom of the condition. Most suffers also experience moderate to severe fatigue, sleep disturbances, sensitivity to touch, light, and sound, and cognitive difficulties. Many individuals also experience a number of other symptoms and even suffer from other overlapping conditions such as irritable bowel syndrome, lupus and arthritis. The cause of Fibromyalgia is a mystery but new findings continue to bring doctors, patients and researchers a basic understanding of the disease. Moreover, there is currently no cure for FM but better methods of diagnosis and treatment of chronic pain continue to be developed.
National Fibromyalgia Association The National Fibromyalgia Association is a non-profit organization whose mission is: To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. The association was founded in 1997 in Orange, California by Lynne Matallana and Karen Lee Richards. The NFA is now the largest nonprofit organization working to support people with fibromyalgia and other chronic pain illnesses. The NFA offers a number of resources including access to support groups – locally, nationally and online. For more information visit the NFA website regarding support or click on any of the following links regarding online support groups.
As a long term sufferer of the condition, I can tell you that support is essential and it is the best decision you can make for your self.
Source: National Fibromyalgia Association

Finding Out


I am not here to claim I know anything. I didn’t go to college to study rheumatology. I am legal assistant with a degree in business administration. All I know is that my journey with rheumatoid arthritis has been a long one, probably about ten years plus and I was only recently diagnosed. I spent years telling doctors about my ailments and every time I was told that “this” is what was wrong with me, I would feel relieved. The diagnoses were always short-lived and at some point, I was embarrassed because I started to feel like it was all in my head.

In the beginning, I just felt like things weren’t right. Nothing was really wrong with me, but it was like this aurora of negative energy was hanging over me. I would feel lethargic all the time. I was never able to feel rested. Now, this is going back as long as ten years ago. I visited doctor after doctor and at some point started to feel like it was all in my head. I remember feeling worn out for days at a time and no one (not even my doctors) could understand why I felt so darn awful all the time.

There was occasional joint pain, and sometimes, my body just ached all over. As the disease progressed, I started feeling these irregular twinges, sharp shooting pain that would be over as soon as they started. I was quite aware that I wasn’t feeling well but I ignored the sporadic pains that I was having. Last year, at about this time, I found out and I was pregnant and somewhere around my fifth month of pregnancy, I started getting a horrible twinge in my lower back. I was also tired all the time and associated the pain and fatigue with my pregnancy. My hands, feet, and knees were swelled up from about my fifth month.
By the time I had my son in September, I had started to understand what I was feeling, enough to describe it to my physician – fatigue, pain, feeling of malaise (dissatisfaction with life), swollen joints, and low grade temperature (even chills). I knew that I wasn’t depressed and that something was medically wrong with me so I was persistent. My doctor ordered every test she could think of that was consistent with my symptoms.

Shortly, before I was diagnosed, my pain had reached new realms. I could define the pain much more clearly – acute aches, burning pains, stabbing pains and even impaling pain. Also, sleep started becoming difficult. My weight was fluctuating (up and down) and there were periods where my vision would be blurred, when I couldn’t concentrate, and I felt really awful. It felt like my body was under attack.

While I waited for my test results, I prayed everyday that whatever I had was curable. I wanted to be able to live a normal life, to be around for my kids and, at the same time, I wanted to feel normal. My doctor called the day before Thanksgiving (2008) and told me that it was time to see a rheumatologist.

I went through so many emotions in the weeks following my diagnosis. I was relieved, finally a confirmation that I was not insane. I was also confused as I knew nothing about RA. Then came questions – so many. How many going to live with this disease? How is this going to affect my children? I started to feel angry and self-pity. Why me? What did I do to deserve this?

I am currently seeing a rheumatologist every two months and I am a combination course of treatment of Sulfasalazine and Hydroxychloroquine. I get my blood tested every two weeks. I am trying to live as normal of a life but some days are in fact challenging. Stress turns into flare ups. I have even had to ask my employers to cut down on my work as the stress can really add up by the end of the week. I haven’t yet informed my supervisor of the reasons why I had to cut down but I know the day will come when I have to let her know. Right now, I am just trying to stay on my job as long as I can. I haven’t really had many pain-free days in the last year, but I am still optimistic that my doctor and I can find a treatment plan that will eventually (hopefully) put my RA in remission.

In the meantime, I am doing my research, looking for and giving support to others dealing with the disease and just counting all the blessings in my life. My goal is to help people understand RA so they do not have to suffer physically and emotionally as I did for a number of years. I started an online support group for moms living with rheumatoid arthritis on Twitter Moms and I am hoping that I can start a local group in the west side of Cleveland for RA patients. RA is a long and tough journey and no one should be forced to bear that burden alone.