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Tuesday, April 16, 2013

The many myths of RA

     When someone is first confronted with the diagnosis of Rheumatoid Arthritis, it can be one of the most confusing and challenging times of your life.  The news of having to live with a disease characterized by chronic pain as well as the myriad of other health issues associated with RA is overwhelming to say the least.
     So to try to sort through all of the information and ascertain what is true, what is false, what is relevant, what is not, can be a task not easily undertaken.  It is, nonetheless, critical to successfully managing RA, that you separate fact from fiction and myth from reality.
     That is one of the most critical tools you can use to manage your RA not only day to day but also in terms of planning for your future with a chronic disease.   Researching the realities of RA is just one way you can take control of what often seems like an out of control disease!
     I know for me, heading to my computer and the local library was a God send when I was first diagnosed 17 years ago.  I felt that I needed to learn all I could about RA before I made any decisions about treatment, my future, my ability to continue to do certain activities and on and on.  I wish had known of the many myths that surround this disease.  So, that said, I am going to share some with you for you to digest and learn about.

   1)  Rheumatoid arthritis is the same as osteoarthritis.  It is not and yet nearly everyone you meet or encounter will think it is so it is up to you to correct that misconception or move on.  RA tends to hit people at a much younger age, especially when you factor in JRA (Juvenile Rheumatoid Arthritis now referred to as Juvenile Idiopathic Arthritis) while OA is often related to aging. There are hundreds of chart and image comparisons that you can are two charts that I like (one short and sweet the other a bit more in depth).

I also like this image of a joint.  It gives a good graphic comparison of the effect of RA versus OA.
     This may well be one of the first, initial myths that you have to handle and it will likely persist throughout your life as each person you meet and share your diagnosis with will need to be informed - or not - the choice is yours.

2. RA effects everyone the same way.  So not true!  In all of my years of meeting folks with RA, and I would guess that number exceeds a thousand, no two people have the same exact experience.

From symptoms, to treatments, to how you cope and how the disease manifests, the differences are countless.  To suggest otherwise ignores one of the most challenging aspects of RA - and that is the total lack of regularity and predictability with this disease.

3.  You don't "look" sick so RA must not be that bad of a disease.   Just because you may not appear to be sick or in pain does not mean that you are not.  RA often is a "hidden" disease, with pain and fatigue our constant companion even when we look just fine.  
As you go through the years, RA patients tend to get better and better at hiding their symptoms and not letting others see their pain for fear of being treated differently or losing jobs, friends, a social life, etc.  Or simply our ability to handle pain and our threshold to do so rises over time. That does not mean we are pain free, symptom free or disease free.

4.  You should wait until you have x-ray proof of joint erosion before starting treatment.  In years past, physicians treating RA would often wait until joint erosions showed on x-rays and/or there was a positive RA factor in the blood to start on the "heavy hitter" medications or DMARDS (Disease Modifying Anti Rheumatic Drugs) such as the relatively new  class of drugs called biologics.  

Studies have now conclusively shown that early aggressive treatment not only slows or prevents erosions but can bring about remission heretofore not even a possibility.  

5.  Exercise is not good for if you have RA and the flip side that exercise can totally relieve symptoms.  Exercise and movement are critical to maintaining muscle tone, range of motion in your joints and to relieve the depression that often accompanies a chronic disease like RA.  I prefer swimming and any form of aquatic exercise as it is joint neutral and actually relieves pain for me.
In addition, it aids in sleep.  On the other hand, the type, amount and frequency of exercise should be carefully planned and monitored to ensure that you do not trigger a flare or make it worse.  Too much exercise is not the answer and can do more harm than good.  

6.  Living in a hot, dry climate and/or diet can cure or relieve your RA.  According to the NIH and other experts in the field of Rheumatology, neither climate nor diet can effectively change your RA.

7. RA symptoms are not treatable and the disease will eventually lead to disability.  There are more options available today than ever before to treat RA.  The good news is that they can prevent joint damage, thus delaying or preventing any disability and relieving many of the nasty symptoms of RA from pain, swelling, inflammation, fatigue and a myriad of other systemic problems that can arise from RA.  
Working with your physician and a team of experts is the key to managing RA and ensuring that you make the right medical decisions for you.

8.  You can handle this on your own.  I saved this one for last because in my mind this may be the single most important one to dispel.  Do not for one moment think that "toughing it out" on your own is the right approach.  IT IS NOT!  Put aside your pride and need to be independent because in the case of chronic disease management you need to let them go if you have any hope of successfully managing your RA.
Understanding and embracing your Support Team is arguably the single most crucial piece of the the chronic disease management puzzle.  Without them, their knowledge and support you will struggle.  End of story.
     So finally, by dispelling and understanding the myths surrounding RA you can separate fact from fiction and better manage your RA.
And once you have achieved that, you will be better able to move through life with joy, peace and a strong sense of how to successfully navigate through your disease journey with a sense of happiness and hope.


Elizabeth said...

Very true. Great post!

Lana said...

Great post! I have learned that living with RA is a complete lifestyle. Everyday of your life, you have to work to make sure your RA doesn't get worse and medication alone isn't enough.

symptoms of rheumatoid arthritis said...

Pain control is an important aspect of treating RA. Ideally, you'll want to use the safest drugs and only when necessary, with the ultimate goal of managing your pain without medications. Some of the safest prescription drugs for pain are the non-acetylated salicylates, such as salsalate, sodium salicylate, and magnesium salicylate.

Faisy Faisy said...

I have never had a food allergy. Ate all foods and never had a rash or anything. Peanuts, no problem. Shellfish, love it. The only allergies I had ever had were to pollen, dust, and animal dander. And penicillin. But I grew out of those environmental allergies by the time I reached 30.symptoms of rheumatoid arthritis