Rheumatoid Disease – Health

For those of you who don’t know, I am now supporting the notion that rheumatoid arthritis (RA) ought to be called rheumatoid disease (RD), to separate it from the notion that it’s anything like osteoarthritis.

So, I had a 6 month check-up with my rheumatologist today.  Even though it wasn’t my best of RD days (very mild “off day”), I’m kicking butt!  I’m doing so well, after examining me, he decided no labs were needed.  How awesome is that and what does that mean?

As usual, I went with a long list of questions.  I love this doctor because he answers all of them for me, and I have a feeling I make him late for other patients (sorry other patients, but there’s stuff I gotta know!)  Conversations were sparked, and I love that because I always learn something.  He noted I appeared to have lost more weight (I had, now at 51 pounds).  I also told him about how my diet has allowed me to tease apart all of these RA triggers and asked him what research says about diet.  I’ve asked this to previous rheumatologists, and I always get different answers.

The answer I got today was that there was very little research about RA and diet.  What research is available isn’t very good, as it mostly asks people to reflect on what they ate (not very accurate).  He went on to say that most research is funded by big pharmaceutical companies, who want to promote their drugs.  There’s no money in changing a diet to treat disease.  I LOVE that my DOCTOR said this.  I have long thought the exact same thing!  And RA/RD, of course, is one of the most expensive diseases to treat.  He also stated that the Arthritis Foundation supports an elimination diet for RA.  I hadn’t heard that before, so I googled it.  This should interest you (especially the second page of the article)…


Note the discussion of trying the “stone-age diet’?  Guess what folks!  That’s PALEO!

My doc and I also went on to discuss some of what it would take to do a Paleo or diet  research study.  To do it right would be expensive.  Could you trust people not to cheat?  Could you house people for a month to monitor what they ate?  Could you get volunteers, keep the study small, work off donations…. my mind is spinning right now.  I would LOVE for this to happen!

So, on to further discussion during my appointment.  What is making me feel better?  Is it the diet?  Is it the fact that I’ve lost so much weight (heavier folks in general will have more fatigue and pain)?  I weigh less, that’s less weight on my hips, knees, etc…  My doc says that some research supports the notion that biologics work better when people are a normal weight, but that may only be true because people with lower weight generally feel better whether they have RA or not.  Oh, the possibilities….

Here’s what I think and why I think it:

I was a normal 5 foot 3+ inches, 127 pounds when I was diagnosed.  I was very fit.  I don’t think my weight or fitness specifically was an issue.  I was in a very tough graduate program where I saw students crying under the stress on a daily basis.  Stress was high for sure.  I worked at 4:00 AM, so my sleep habits were definitely messed up.  Lack of sleep may have been an issue/stressor.  I was in college, I lived alone, and I didn’t know how to cook meat, so I didn’t eat much protein.  Diet could definitely have been an issue.  So, basically, I think diet, stress, and sleep are likely high on my “start of rheumatoid disease” list.  Weight loss was only after I ballooned up to 185 (and over 200 when pregnant with my son) as a result of lack of ability to exercise and steroid prescriptions.  Losing that helped, I’m sure, but doesn’t explain it all.

K.R., I want you to think about this part.  I’m not sure if it applies to you, but I want you to think about it.  This thought has occurred to me.  What if my rheumatoid disease isn’t any better than it was pre-paleo?  What if I’m just healthier, so I feel better in general, and therefore my rheumatoid isn’t as noticeable?  My inflammation markers are down (wonder what my numbers were when I was first diagnosed?)  What if my fatigue is better because I’ve managed to learn to exercise with my disease?  I will say I’m nowhere near as strong as when I was diagnosed.  What if I’ve just gotten the rest of my body so healthy (better sleep, food, stress), that rheumatoid disease (arthritis) can’t have as dramatic of an impact on me as it did before I got so healthy?  What if eating all of these fruits, veggies, and meat is exactly what I needed?  What if I can IGNORE my rheumatoid disease?  I have days when I feel dang near perfect, but I still have days when my RD is noticeable.  It’s definitely not gone, but what if I’ve just gotten to a point where it doesn’t matter.  I guess another question is, will it matter in the long run?  Maybe I’m still doing joint damage, but don’t feel it (xrays don’t seem to indicate I’ve had much further damage since 3-4 years after diagnosis, and I’m now in year 17).

What if I’m so healthy in all other areas of my life that having RA doesn’t matter?  Is that possible?  Should my overall health be what I’m treating, rather than rheumatoid disease specifically?  And if so, what specific areas of health should I treat within myself?

I am thinking more and more that folks with RA have more control than they think (and I sure thought I had no control except how often I injected my meds).  What if this whole time I needed to be treating ME and not my rheumatoid?

Think about it!  I’d love some comments here on the blog or on Facebook!

– Lori


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