Arthritis

This is my story about my rheumatoid arthritis. I am not a medical professional and all of the information presented below is based solely on my experience and opinion. 

The Beginning

It all started a long long time ago in January of 2003 at the best university on earth.

It was the second semester of my freshmen year and I was headed back to school after Christmas break. On the drive up I felt sore like I had been weightlifting the day before, but of course I had spent the whole day on the couch, so that wasn’t a possibility. I just brushed it off.

But, over the next few months the pain continued all over my body. It was painful to sit, to move, to lift my arms, to shower, to walk, to do anything. I was still going to my classes, but it would take me an extra hour to walk there because I couldn’t make my feet move. I completely quit exercising and leaving my dorm room. It was all I could do to keep up with my classes (which I ended up bombing). All I did was go to class, do homework, and sleep. Everything else was too exhausting. Because my parents lived 5 hours away and I always think I’m dying of something, they didn’t realize how bad it was for a while. I finally came home one weekend and my mom drug me to our family physician who suspected arthritis (among other things) and set me up with a doctor in Lubbock.

It took about a month of testing everything from the terrifying (Lupus) to the embarrassing (Syphilis – guess they thought I had been sleeping with an 19th century aristocrat) before they diagnosed me with RA.

Medications

I was immediately put on a very high dosage of Prednisone (which made me feel better immediately), hydroxychloroquine (to prevent further joint deterioration), Mobic, and Enbrel. I woke up the next morning and for the first time in months I could get ready for school, walk, go up stairs, and sit in class without feeling like I was going to die. But, the Prednisone was really hard on me. I gained about 30 pounds, was very moody, had terrible breakouts, and was just angry for no reason (and I’m normally a pretty happy person). I was on Prednisone for about a year before I started to wean off it. The pain came and went, but it was overall manageable and life was much more enjoyable. In late 2006, I stopped experiencing the severe pain and swelling for months at a time. We slowly decreased my meds to where now all I take is Mobic each day.

Side Effects

Prednisone’s most notable effect was on my skin and metabolism. Before it, I rarely had a breakout and made it through high school with pretty good skin. I also had a good metabolism. I did run, but even in off-seasons I only gained a few pounds and my eating didn’t really decrease. When I started running again, I was able to easily go back to my running weight. I also realize that this was in high school and that was many moons ago. But a couple of years later, after 12 months of Prednisone, I gained weight I couldn’t lose. I exercised and ate healthy and I couldn’t lose a pound. It took me about five years to lose the first 20 and I never lost that last 10 again. I was a normal weight when I started, I’m 5’6″ and I weighed consistently around 130. So it’s not like I’m mourning that I don’t weigh 110, I am not going Black Swan at it.

I do have a couple of toes and fingers that are slightly turned and nobby, but they have stopped moving in the past few years. I also have had some major changes in my lens prescriptions. The Hydroxychloroquine can cause blindness and I get my eyes checked frequently. Luckily, this too has slowed since I got off that medication.We have no idea why I have Arthritis. They say something can just blow through that triggers it. Tell me that’s not fun to think about?

Life Today

Since then the pain has been off and on. I do feel different pain when the weather changes. Since I’m stuck in boiling hot south Texas, it has only been cold enough a handful of times for me to even notice. When I was on the heavy medications all I did was sleep. I was so tired and exhausted all of the time. I felt like a bus hit me. It was really scary and depressing. My family would go on vacation and all I could do is sleep in the room. We tried to go skiing once, but it was so horrible we spent most of the trip in our hotel room. And, arthritis can make you super uncoordinated, so I had some really bad falls. I still have bruises from 7 years ago. Oh and you bruise really really easily and they don’t heal for a very long time. It is very very sexy come short season.

My parents were also really worried about the long term effect of the medications (such as facial distortion, blindness, depression…) and we were happy to have a doctor that medicated me as needed. Granted, this didn’t happen until I felt good again and was experiencing very little pain. I try to take folic acid, calcium, and glucosamine every day.  I still can’t grip things well and I can’t open a jar to save my life (majorly depressing when I’m alone and wrestling with a jar of Nutella). Luckily, my sister bought me an electric jar opener and now I feel superhuman.

It’s still really hard for me to carry heavy things like grocery bags and I get fatigued from just standing in one place (I can’t stand in one place for more than a few minutes, talk about feeling lazy). It’s hard if I have to sit for a long period (several hours) of time because I get “stove up” and it takes me a minute to get moving again. Otherwise, I feel really lucky because my pain and problems really are on the low end of the misery scale right now.

Running

I ran consistently from 1998 through the fall of 2002. After arthritis, I pretty much completely stopped until the summer of 2009. So when I compare running before and running after, I do realize that there is a major gap in time, weight, age, and physical ability.

I do find that running is more difficult with RA then it was before. I don’t recover as quickly, I get fatigued easily, and my body parts seem like they ache a lot more (I wear really padded shoes to run because they are the only ones that don’t make my feet feel like they are breaking). I also ice my knees, hips, and ankles every night as well as using a foam roller. I found these steps have really helped me recover faster. I also take Naproxen before long runs and Prednisone if I am in an unreasonable amount of pain the next day. I have learned what to expect in terms of normal soreness from a long run versus abnormal joint pain. My feet hurt in the morning which is why I hesitate to run at that time. It feels like they are bruised, it’s hard to explain, but they are total bitches in the morning.

I found that once I felt better and could exercise it increased my energy and well being. When I skip exercising for a week or more now I feel much more tired and achy. I’m sure there may come a point where running becomes uncomfortable or painful and I will stop then. But I still enjoy swimming and cycling which seem to be pain free.

My Thoughts

I think it is really important to find a doctor whose goals are similar to your own. My parents were really worried about such aggressive medications and we found someone who didn’t want me on them long-term. Most people I know started on aggressive medications just to help the pain and stop further damage. Icing the areas in pain and getting massages seem to have helped me. My mom and I spent a lot of time reading about Arthritis and spending time on the Arthritis Foundation page because we didn’t even know where to start asking questions. Overall I feel really lucky because it is manageable and I have a normal life. I really can’t complain because it could be so much worse, but I probably will anyway. Deal with it.

An area that I am hoping to focus on more now is diet and how diet can aid in preventing inflammation. Even though some research points to a plants and grains based diet while others point to plants and meat (Paleo), they do seem to have some agreement on how dairy, sugar, alcohol, and gluten may affect inflammation rates. I have been reading about the Paleo diet and I plant to start implementing it soon. I also need to lose weight because weight gain does affect inflammation and joint pain. So that is an additional goal. I’ll keep you updated!

If you have any questions, comments, concerns, or suggestions email me at runningoffthereeses@gmail.com. I’m always happy to talk about it and I welcome opposing opinions and thoughts.


14 Responses to Arthritis

  1. Lucia

    Have you tried acupuncture and changing your eating habits? I am a firm believer that there i a way to cure everything without having to take pills. because while it might be helping you with something, the chemicals from it might be messing up other things. I tore my acl playing soccer, and they told me i needed surgery but with acupuncture and chinnese medicine i was able to cure my knee without any surgery

  2. Thanks for sharing your story! It’s definitely a tough line to walk when you’re looking at the benefits of medication vs the side effects. I’m really interested to hear about how the diet changes affect your symptoms! At the very least you’ll have symptom relief if you ever get pregnant ;)

  3. Allie

    I just discovered your blog and love it! I also have RA and experience a lot of the symptoms you do. Its worse in my hands and ankles and have had to give up running because I was told it was bad for my joints. I do a lot of exercise because it makes me feel better but I stick to cycling and weights. I had no idea it makes you uncoordinated though but it explains why I trip all the time and drop things! I also know what you mean about sitting still for long periods of time, your feet feeling like they’re breaking, medication making you tired and being unable to open jars! Sounds like you had a bad experience with prednisone. I’m on methotrexate but took prednisone briefly last year. Fortunately I didn’t have any side effects. Finally I have also been thinking about changing my diet. I hardly ever drink now (due to my medication) but think I really need to cut down on sugar. I didn’t realise dairy could be a culprit and would love to hear about your experiences when you do change your diet.

    • Reese's Runner

      Hey Allie! I’m sorry you have RA!!! Ugh that is so frustrating! I try to eat less sugar, but about once a week I eat about two pounds of candy. I just can’t quit. I’ve noticed that when I eat a lot of dairy I hurt too. I’m having a hard time living without cheese.! How are you doing?

      • Allie

        Haha I’m the same with the candy! Sugar is just too addictive. I didn’t even know dairy was a trigger food until reading your blog so I think I’m going to try and cut back (I eat a lot of it at the moment!). No cheese or yogurt is going to be so hard!

  4. Hayley

    I just recently stumbled on your blog and I am loving it. You are hilarious! Thanks for sharing your RA story. I have been on a gluten free diet since October (pretty much went into it kicking/screaming/refusing) but a Celiac diagnosis forced me into it. My joint pain was gone within the first 6 weeks and now it makes sticking to it a lot easier. It was totally overwhelming to begin, but now I’m experiencing running like I used to. I’m excited to see how any diet changes affect your RA, I hope you find something that works for you.. Good news: Reeses and cheese are gluten free.

    • Reese's Runner

      Wow that is really good to hear! I’m glad you have actually found some relief! I “try” to eat less gluten, but I fail a lot. But, I’m going to keep trying!

  5. Krystal

    Cely, how has gluten free worked for you? I’m supposed to be getting gluten free for my interstitial cystitis but I’m really intimidated and afraid that I wont be able to stick to it, I’m so glad you shared your experience with pain and I’m sorry if I seem like a jerk when I comment on your blog I’m usually in pain and that makes me grumpy : ( it really sucks you have to deal with that but for me finding other people that understand pain is like a God send it’s extremely hard because my Husband and 3 boys don’t really get it (they really do try) and keeping up with them is super hard! Thank you for sharing!

  6. Hi Cely!

    I literally have goosebumps reading this story. I too was diagnosed with RA back in 2004. I played college softball at UCLA and was in so much pain that it was about time to hang up my cleats. I was on prednisone, celebrex you name it. And the prednisone made me crazy, literally. After having a hysterical melt down, and screaming at my entire family and boyfriend all in the same room, and crashing to the floor crying, I realized I couldn’t take the RA drugs anymore.

    So I started reading EVERYTHING under the sun about inflammation, arthritis and nutrition. But the two reads that changed my life were Skinny Bitch, and the China Study. I became a vegan, gluten-free eater in the summer of 2005, going into my Junior year at UCLA, vowing to get healthy and find a way out of my meds.

    Within a week ALL of my symptoms were gone entirely. I have never looked back. I threw away all of my meds, and never went back to my internal medicine doctor. There are still days that I wake up with aches and pains, but I’d like to think that my RA is dormant.

    I am no doctor, obviously, but something in my life changed, and the biggest change was what I put in my body. If you ever want to chat about this, I’d love to tell you more in depth what I’ve learned.

    Love to you.
    Whitney

    • Reese's Runner

      That is so awesome!! I’ve found I feel a lot better if I avoid processed foods, sugar, and alcohol. But thankfully, I fair pretty well even though I clearly eat those things regularly. I think if I had to go back on prednisone for more than a few days again I would probably make some major dietary changes similar to yours. Anyway, I’m happy that you are doing so well!!

  7. I just found your blog and am inspired by your story. I was recently diagnosed with MS and am hoping to stay active through it, so it’s nice to hear of others who continue to run and work out while dealing with challenges of their own.

  8. JINA

    I smiled all the way through reading your experience of RA. Weird, but it felt like you were telling my story. I was only diagnosed five months. Before reading yours and other suffers’ blogs, I felt like I was having an outer body experience. Hmmmmm

  9. Claire

    It’s really great to see someone talk about RA. I’m 22 and have it for 3 years. It’s so hard to be so young and deal with a disease that can be so crippling. I’ve gotten some good tips from your page and I’m happy to see you have yours somewhat under control!

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