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I’m winning the fight and here is how!

I was diagnosed with RA at 21 years old. It wasn’t too terrible for the first 10 years, just joint pain, stiffness, and feeling tired with periods of remission. In my 30s I went to get help, because I was getting worse flares, though the swelling was still mild in my fingers. At that time they said I was too young to start the drugs available for it, and that I should wait until it go worse (that’s how it was back then, now they know to start DMARDs right away).

The severe symptoms started

In 2017 after a two year period of relative inactivity, I had a few bad flares, and then in 2018 I started having severe pain in my joins, and worse of all my neck. It was so bad, it would wake me up from my sleep, and one morning I got out of bed and couldn’t move my knees for a few moments as if they were glued together. I went to see my doctor immediately, and they got me started on meds. First they hit me with steroids and a stronger NSAID, then started me on Plaquenil shortly after. Then a few months later they started me on sulfasalazine. Along with my joint symptoms I also have digestive issues, hair loss, and chronic canker sores in my mouth since it all began in 1997. They ran tests, and thankfully no Crohns or UC has turned up, but there are still things to sort out.

It’s been over a year of horrendous pain and suffering. At my lowest point I could hardly hold my head up, my fingers were stiff and felt like they were in a vice, and I was exhausted all the time. But with the help of my doctors and my own initiative I am winning the fight against RA.

I decided that I’d attack my RA from all sides

1. DMARDs I take are sulfasalazine and Plaquenil and a strong NSAID to help reduce the pain. My doctor threw in Vitamin D supplements and a multivitamin to take daily to keep my levels up. Also an inhaler until the DMARDs kicked in because I was having asthma attacks (haven’t had to use it in over a month!).

2. I went to physical therapy, because I had to deal with the changes in my cervical spine. Until I did, I wasn’t going to be able to do exercises to get my strength back, and cardio was out of the question since it was painful just to drive in a car to my appointments. I could walk at least and do some simple exercises, though my knees were killing me for awhile due to damage (Just because your joints aren’t swelling much doesn’t mean they aren’t going to take damage). Physical therapy gave me the initial exercises to start doing to combat muscle loss and to build some strength back up so I could get moving again. Over the last 3 months I have been adding more exercises.

3. I went to a clinical psychologist, because I had learned that RA also affects the brain. I had been suffering from anxiety and depression for a long time (for awhile I was so out of it, I didn’t even know I was depressed). I also had terrible brain fog, trouble concentrating, and remembering things; it got to a point I could hardly pay enough attention to watch a TV show, and socializing was difficult because I couldn’t focus on the person talking to me. I was having difficulty sleeping even when pain was controlled. I started taking Venlafaxin and Melatonin. Venlafaxin also helps with pain.

4. I went to a nutritionist and discussed all the problems RA was causing me, and she helped me develop a specific diet plan to combat fatigue and muscle loss from my RA. One problem I have had is that I lose my appetite and it’s hard to eat. I also tend to want to eat sugar because it gives me quick energy and a sugar rush that makes me feel mentally better for awhile. This causes me to lose muscle and gain fat. So she helped me pick foods that would help combat this, and help me reach my daily caloric needs. My diet now consists of lean meat, vegetables and fruit, with some whole grains for the most part. I will occasionally eat something like pizza (like once every 2-3 months), but I mostly avoid sugar and fatty, greasy foods (an occasional lapse doesn’t harm anything, and keeps life enjoyable).

How I’m doing current day

It is now almost July 2019 and today I ran 2.5 miles, walked my dog, and mowed my lawn and I am feeling good. I am lucky that I didn’t experience any severe side effects from anything I’m taking so far. I just had to get through the initial few weeks on sulfasalazine as my body adjusted to it, and deal with the pain and fatigue as I forced myself to move more, and working on my diet took a little while to figure out and get used to.

I hope my story inspires you to get up and fight your RA. It’s worth the effort. For the first time in 12 years I feel like I’m winning my battle.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Sanaveed
    4 months ago

    After taking medicines u faced any side effects? Any other increase in risk of symptoms?

  • BeccaFloyd
    4 months ago

    I’m shocked to hear your RA doctor told you that you were too young to start on meds, I was diagnosed in 1987 (I’m 35 now) and was among the first to be prescribed methotrexate, and I started taking Humira around the age of 15. It’s very interesting to hear how different doctors treat different patients. I think that’s one of the biggest struggles with RA, there is no standard treatment plan, as we are all affected differently by this disease. How wonderful that you are now able to do SO much, I consider that a huge win in dealing with RA and it’s symptoms. So much of our journey involves advocating for ourselves, and it sounds like you’ve done a great job doing that, on multiple fronts. Your story is an inspiration to all of us that are doing our best to live the healthiest, fullest, most rewarding lives we can.

  • jonnyohio author
    4 months ago

    I’m also surprised they didn’t treat it 10 years ago! All I knew back then was that there was something called methotrexate, never heard of anything else, and since they recommended exercise and NSAIDs like the doctor did when I was 21-22, I just figured there was nothing I could do but wait until it got worse. My new Rheumatologist (and my new primary care doctor) doesn’t understand why they refused to treat it back then either since Sulfasalazine has been available for a long time, and is considered a safe drug to take for it (My previous Rheumatologist is no longer working at the place I go). I did read that things have changed over the years, and that it was quite common to avoid DMARDs until there was signs of damage, but now they just start you on it right away because it takes time for DMARDs to work. I just feel super lucky that I had such a good response to Sulfasalazine and Plaquenil, and am so happy right now. I’m down to the same weight I was when I was in my 20’s and I’m putting on muscle I lost over the last year, and I’m still losing fat around my waste instead of wasting away. It’s such of a great feeling!

  • Holly
    4 months ago

    This is one of the best stories I have ever read on here. You are a great inspiration. It’s good to hear you are doing so well. I have no idea what sulfasalazine is, but I plan to look it up!
    Thank you.
    PS I am also doing well … worked like a dog at it, but always am happy for advice and support!

  • MrsT
    4 months ago

    When I first started with RA back in 1972, all they had was aspirin!

    I’m glad to hear the meds are working for you, and you are doing so well!

  • Louise1024
    4 months ago

    Thank you for a truly inspiring story. Glad that you are doing so well.

  • Franki King moderator
    4 months ago

    Thank you so much for sharing, @jonnyohio! What a great story. It’s inspiring to know that you fought and won.

    I was diagnosed young, too, I am 22 now so it has been 7 years. I am currently experiencing the same symptoms that you felt in the beginning – just occasional joint pain, stiffness, and feeling tired with periods of remission. I’m afraid that as time goes on it will only becoming increasingly harder to feel good on a daily basis but you have reminded me that fighting RA pays off!

    Thank you for being a part of our community!

    Best,
    Franki (RheumatoidArthritis.net Team)

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