Why I call them “Rheumatoid Arthritis patient facts”

There were many things that didn’t add up as I started to read Rheumatoid Arthritis “facts.” What I read was not what I experienced. The more I heard from RA patients, the longer was the list of things I wondered about. I can’t believe I’m saying this out loud.

By the way, yes, I realize that I’m generalizing. I’m sorry if that bothers anyone, but I’m not claiming any percentages. These are just things I’ve noticed. The thousands of comments on this blog support the following conclusions:

 

Ok, I’m pretty sure of these Rheumatoid Arthritis facts about RA patients

1. Patients often disagree with rheumatologists about a status of RA remission or “control.”
2. There are a disproportionate number of nurses and hairdressers with RA.
3. There is not really a typical Rheumatoid Arthritis.
4. Side effects seem to come and go, but patients do better when they are warned, which is not frequently.
5. External obvious swelling does not consistently correlate with pain.
6. In some ways, not much has changed in 44 years.
7. I think people with RA are usually optimistic, kind, and helpful.
8. So many RA patients are diagnosed with FMS for well-known RA symptoms.
9. Almost everyone I meet with RA had symptoms for years before diagnosis.
10. RA patients often don’t realize that their comorbidities are due to RA.
11. Most RA patients are private about how much pain they live with daily.
12. Most RA patients have a higher than average pain threshold.
13. Using joints often causes flare. Using flaring joints makes them worse.
14. There are things that some RA patients need that they don’t get – like work accommodations, medical treatments, or better mattresses or shoes.
15. Most RA patients I meet hate people thinking that they just have “arthritis.”
16. Most of us have already tried eating healthy, exercise, and juicing & it didn’t help our RA.
17. Many of us have had a doctor doubt our veracity.
18. There are often discrepancies between the facts & what is in medical charts of RA patients.
19. Most of us have a family member who doesn’t “get it” or won’t hear the truth about RA.
20. Hoarseness due to inflammation in larynx joints is not rare.

I was really tired when I made this list. Can you think of anything I missed?

Recommended reading:

• Bewilderment of Early Aggressive Treatment of Rheumatoid Arthritis
• Fibromyalgia Diagnosis: Do They Know for Sure?
• What about Classic Rheumatoid Arthritis?
• New Greece Shoe Policy for Diabetics Favors Amputation

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This entry was posted on Tuesday, November 30th, 2010 at 6:00 am and is filed under Don't miss this!, Reality Check. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.