Talking About RA and Balance: Pain Relief in Big and Little ways

If you have ever read me before you probably know that my blog is 2 fold.  I talk a lot about food, but I also talk the relationship between that food and my auto-immune disorder.  I am trying to balance my life so that I feel as good as I can and one of the ways I do that is through eating a vegan diet.  But that’s not the only way.

Today’s post is more about the RA side of things then the food.  Because going vegan has helped me deal with RA, but I still take medication.  I’d love to think that someday I won’t have a need for those meds but for now they are a part of how I deal and balance.  And they may always be.

Taking care of the pain is part of the balance of living with RA.  There are different ways to do that but it is integral to functioning appropriately because without some control of the pain I couldn’t function.  But having read Kelly at RA Warrior’s recent post I am lead to believe that many people have difficulty with this.  That not all rheumatologists are willing to discuss pain and prescribe medication or talk about ways to handle it.  The conversations that arose from a Twitter chat about RA lead Kelly to create a blog carnival all about pain.

It’s not that I don’t think about pain.  I think about it every day.  But until Kelly put out the request for posts I hadn’t put much thought into writing about pain.  But I have been writing a lot about balance lately and this fits in nicely.

I seem to have a very high pain tolerance, as friends remark regularly.  Apparently I do things like shake out my hands and /or move body parts to adjust them without really thinking about it.  Often when friends say “So?  You’re hurting?” my first reaction is to say “No.”  Sometimes I think that I’m so used to being in pain I don’t always notice it.  I know I often don’t notice it until it’s almost too late.

My rheumatologist and I have discussed this.  She has told me I don’t have to be in pain.  She encourages me to take my pain meds regularly and not wait until I’m feeling bad.  (At this point 2 alleve twice a day plus the other meds.)  Together we have tried to reduce my prednisone.  The first time we tried it didn’t work at all and she told me to stop.  Now we’ve managed to get it down by 1 mg a day.  Not much, but something.  Her reasoning, among other things, was that if I flare badly when I go back to school I will have some leeway as I can easily go back up.  How sad it is for me to think that other rheumos don’t talk to their patients like this.

We talk about food too.  She says I’m the only patient she can remember who has lost weight while on daily prednisone.  When I told her I feel better since going vegan she was thrilled.

At my appointments we discuss stress and ways to reduce it.  She asks me about how much I’m sleeping and what I do to relax.  When I told her I was saddened that my hands can’t handle me doing my mosaic artwork much anymore we brainstormed other things I could do to feel creative.  It’s a conversation we have.  Yes she is the doctor but I am the one living the life.  We both have our expertise.

It’s not totally her job to make me better, nor is it totally my job.  We are working together and I wish all patients had that relationship with their doctors.

She helps me manage my meds.  She monitors my blood levels and says things like “Your white blood cell count is lower than I like” which gives me information to make good life choices.  Not all those choices are easy (like the one I made recently to change positions to a job where the stress might be a little less and the exposure to some sicknesses a little less) but I feel like I have someone who trusts my judgement.

I am responsible for being a good patient.  This means taking my meds, having my blood drawn when I’m told to, and following up with other specialists.  (Like the eye exam that was overdue??  Yes.  I did it!)  But it also means both telling her the truth about my pain and trying other ways to deal with it beyond the meds.

I tried massage.  When I had a major flare in my 20s it did help some.  This time it felt great when I was having it done but I hurt for days so I decided against it.

I like guided imagery for pain assistance.  My personal favorites are ones by Belleruth Naparstek like this one.  (I am in no way connected with her or her company.  I have just had some mild success with them.)  They don’t take the pain away but they have been known to relax me enough that I can sleep when the pain is vicious.

I firmly believe that cutting out animal products from my diet has helped me with pain and inflammation.  Particularly when I have dairy I feel both more sluggish and more swollen.  And having improved my diet to the point where I am eating less processed food I have eliminated most of the symptoms of IBS and reflux I had before.  Since I feel a little better dealing with the RA is just a little easier.

At my last appointment my doctor asked if I would be willing to try yoga.  Her thought was that she wanted me to have multiple ways to deal with the pain.  She wanted me to have a variety of strategies to deal with flares so that I could have the most normal life possible.  It’s like having a great big toolbox of ways to handle pain.  There are the tools I use regularly, plus some that are there if I really need them.  It’s another way to balance.

What do you have in your toolbox to handle pain?

7 responses to this post.

  1. You have an amazing rheumatologist! I havent dealt with pain, but the proper cause and hence treatment of my balance and eye problems hasnt been found, with 10s of specialists in the picture but no one person to look at the bigger picture and figure out the some solutions.. dealing with things that i cannot do anymore,prioritizing what to try doing and so on is the way of life. Some yoga and Tai chi is what i am focussing on right now.

    My parents and grandparents have dealt with some or the other problem and have benefitted by Yoga(personalized for their problems by an expert), Acupuncture and Reiki. You can try some of these to see if they help.
    Take care.

    Reply

    • Richa:

      Thanks so much! I think I realized while writing this how amazing my rheumo is!

      I have thought about acupuncture but haven’t made that leap yet. I need to!

      Reply

  2. You’ve given me something to think about. Any tips on being successful with a vegan diet? I don’t think it would be too hard for me. I don’t eat much meat now so i really wouldn’t miss it much. How did you start?

    Reply

    • Jane:
      I was sort of crazy and just jumped in to be being vegan without the normal omni to vegetarian to vegan transfer. For me, deciding that I was not going to have dairy at all was the biggest decision. I tried out different milk replacements. For drinking or on cereal I prefer sweetened vanilla almond milk (though I like things sweet). For baking I prefer unsweetened plain coconut milk. I think the soy sour cream and soy cream cheese are just fine. For a long time I didn’t eat any fake cheese because I didn’t like them at all. (You have to be careful when you check fake cheese because they often include casein, a milk protein.) I just ate my pizza without cheese and was fine. Dayia makes a vegan cheese that is pretty good though not exactly like regular cheese. Once you get comfortable with that then you could tackle eggs, especially if meat is already something you don’t eat much of. (I prefer flax meal and water as my egg replacer in baked goods though there are others that work as well.)

      I recommend that you do some research on anti-inflammation diets. The book “The RAVE diet” has been recommended to me though I have not yet read it. It recommends a very low fat vegan and gluten free diet for dealing with auto-immune disorders. You’ll find a lot of different things when you read about this. A lot of it recommends a very strict way of doing it. For me I needed to take a more moderate approach (though some might not think going vegan is moderate! lol). I still eat nightshades (tomatoes, eggplant etc), soy, and gluten which are all things recommended to avoid. For me removing dairy, meat, and eggs made enough of a difference that, for now, I’m good. There might come a time when I decide to take gluten out of my diet to see at least if it helps. As I’m sure you know with RA comes things like an increased risk of heart disease so I figure that at a minimum I am helping that with my diet. Plus, things like reflux and IBS that were bothering me are now much improved which means I have “more energy” to deal with the RA.

      I am not a doctor nor a nutritionist. These are simply my experiences. But I’d love to talk to you more about this if you are interested, especially if you have questions about cooking and baking. Good luck!

      Jen

      Reply

  3. Posted by Marie on August 19, 2011 at 9:36 AM

    I really like your blog – I too have purchased books on Vegan Gluten Free (I was tested for food allergies by my naturopath – allergic to gluten, dairy and eggs!!) I still eat meat at present, but have increased my fish intake – trying to go Vegan is something I want to do, but the family doesn’t – makes it hard!!!

    Reply

    • Thanks Marie! We are a “mixed family” here. I’m a vegan, my son is gluten free (and has sensitivities to potatoes and sweet potatoes, apples, oranges, peanuts and pecans), and my daughter and husband are omnivores. But I’m very lucky to have a family who is willing to go along with my food things. We sometimes eat all vegan and sometimes there is meat at the table and I just don’t eat it. (At those points I make sure the side dishes are heavier.) Good luck to you!! Feel free to ask any questions!

      Reply

  4. […] and it gets chosen quite a bit.  I’ve even written several posts specifically about balance: Pain Relief and Balance, More Balance and Dessert, and Summer is Over and Finding […]

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