Rheumatoid Arthritis… What does it feel like?

Pain can be a major drain

According to the Mayo clinic definition, Rheumatoid Arthritis is an autoimmune disorder which “occurs when your immune system mistakenly attacks your own body’s tissues. In addition to causing joint problems, rheumatoid arthritis can also affect your whole body with fevers and fatigue”.
Let’s think about this for a moment… That means my immune system really attacks my own body’s tissues? Yes, once you are diagnosed with this debilitating disease, you learn that your body will constantly fight YOU for the rest of your life. Imagine that… Your body has no control of your body. Scary stuff.
In my case, pain moves throughout different joints in my body, but it does so symmetrically. So if my left wrist is in agonizing pain, my right wrist is sympathetic and the pain in my right wrist becomes excruciating too. The same is true in my toes, my fingers and most often.. my hips. My hips burn constantly. When my disease flares up in my hips, knees or ankles, I can barely walk let alone make my way up the stairs to my second floor bedroom.  When my fingers are affected, it’s impossible for me to wash my hair, brush my teeth or button my own fly. Thank God leggings are back in style!
While it’s true that research and medicine have come a LONG LONG way over the past 5-10 years, they haven’t yet come far enough.  I started trying various drug cocktails about five years ago now. From Methotrexate to Prednisone to Humira to Enbrel to Sulfasalazine to Naproxen to Vicodin to Celebrex and still no 100% relief?! Unbelievable. My current flavor of the week is a combination of Humira, Methotrexate and Sulfasalazine. Who knows what’s next? My doctor recently mentioned Orencia which is given through transfusions once a month. Sure, I’ll find the time to spend an entire day at the doctor’s office once a month between working all day and going to school in the evenings…
All of that being said, I’m starting to get the feeling that I’ve painted myself as an absolute pessimist between my last two blog entries. I promise you dear readers, that is not the case. In fact, it’s amazing what happens to people when God throws some obstacles in their way. Nothing is impossible! More on that later.



33 thoughts on “Rheumatoid Arthritis… What does it feel like?

  1. Katie you are an interesting writer. I look forward to reading your future blog posts. Even though you are struggling with this potentially crippling disease, one would never guess with your outwardly positive attitude! And even when you are faced with life’s obstacles, you still find time to come up with clever quips like “Thank God leggings are back in style!” and “…varous drug cocktails.” Very Katie of you 🙂

  2. When I suddenly experienced intense pain and swelling, leading to the discovery that I had developed RA, I felt totally blindsided. I knew nothing about this disease and needed info that I could understand right away.

    1. I completely agree bird.. part of my mission is to create awareness about RA so nobody has to feel alone the way you and i did when we were first diagnosed. Take care and stay well!

  3. Katie; Thank you for you blog. You do a great job at explaining the pain and what it’s like to have RA. We have lots of people come in to our research facility and talk a lot about what you describe.

    I am not sure where you are located but if you in the DeLand, Orlando, FL we do clinical trials here. If not, maybe some of your readers could contact us

    Treatments for rheumatoid arthritis are one of the research studies we’ve been working on here in DeLand, Florida. Some of our investigational treatments have shown promising results, but there is we need to do additional research studies to test investigational methods that may help us understand the condition.

    1. Thank you so much for sharing don. I am currently located in the Chicagoland area, but am interested in centers conducting clinical trials like your’s does. Hopefully, some of my readers in Florida can take advantage. We appreciate everything you do!!

    2. Don, it’s so great to know the research is on-going. I wish I lived closer, I would definitely jump in, but I’m in Houston, keep up the good work and please keep us posted!!

  4. i think i have it my fingers knees ankles and elbows are very painful it keep awake most night and i have the pain all the time it get very red as well it make it very hard to do things around my house

    1. Hi Jean, thank you for sharing. I definitely feel your pain. My fingers and hips are usually the worst. Lately, my knees have been acting up pretty bad too. Have you found any medication to help you during your flares? I hope that you have been blessed with people in your life to help you around the house. Keep well and take care!

  5. Hello Katie, I just ran across your blog while checking out some other RA blogs I follow. I was diagnosed with RA 7 years ago. It’s not an easy journey that we are on, but we continue on and do the best that we can. I started on Enbrel/MTX, then Orencia, now am on Humira/MTX. You mentioned Orencia infusions. it would take on average 1 1/2 to 2 hours from walking in to walking out when I was doing them. Wouldn’t it be great to find 100% relief?

  6. I have read all of the above comments,and i hope one day there is a cure for this.
    My daughter is three almost four and she has been diagnosed with JRA,it is terrible for her and our family to deal with.The hardest part is im mommy and i cant make ir better or go away.We are having a hard time finding the right fix for her.If anyone could tell me anything they do that seems to help during a flair up…or just on one of the bad days i would greatly appricate it.

    1. I read your concerns and I can here the pain you are in, right in my ears.
      Nevertheless, life has to continue.
      could you try the forever living products. My doctor told me they helped a certain patient of his.

    2. Hi to all,

      name is Toni and I am from Australia I am new to this site but always read your comments and stories. It seems so hard for me to understand that how much pain someone goes through when they are having a flare up. I have had RA now for 10 years and have tried many treatment and cocktails and now for the latest one Orencia I start this one on 22/8/13. Wanted to ask has anyone else been on Orencia and if so how they found this one to work. I read that it could give you cancer and of course I am worried. Look we are all worried about the end results of these drugs we take and how much damage they are doing, but we don’t want extra damage do we. I am so scared sometimes of how Ill end up, I suspect its the pain that does this to me. You know how hard we all try to just get on with life and try and enjoy our good days which are not that often I have not had any treatment’s since January, and been up and down with flares ups and I am just so tired of all the pain.

      Katie you was in Australia Canberra not long ago and my Dr. went to hear you speak I wish I had known I would have crawled to hear you.

      1. Hi Toni – I WISH I was in Australia recently!!! 🙂 Unfortunately, that was not the case. How are you doing on the Orencia? I haven’t tried it, but am having no luck with Enbrel or Humira and am read to try something new. Keep me posted. I hope you’re feeling BETTER!

  7. Katie,
    I’ve been told that a change in my diet can alleviate some of the pain – I haven’t seen a change yet…..any suggestions?

    1. What changes have you made to your diet? Have you eliminated red meat and wheat? Try exchanging those things that cause inflammation with other things that can help alleviate it like salmon, veggies, chicken, whole gains, etc. Also add vitamin D. It helps!

  8. I just found out that i could have had an RA flare up. The doc thought that it was tendonitis and gave me a steroid shot and it seemed to help. waiting to see a RA doctor to find out if that is truely what i have. I feel so overwhelmed and confused, and know that the stress right now is not helping at all. Hips and legs ache all of the time shoulders are always stiff.

    1. I’m so sorry to hear that Michelle! But think I know just how you feel. It’s so scary to learn you might have a chronic disease. Have they tested your RH factor via blood test yet?

  9. I find it really helps to pace your self and to stretch every morning, I feel limber after this. I’ve recently started on cimzia along with sulfasalazine and plaquinel with this combination it only makes me comfortable but am still experiencing that dull pain. So I find that being active really helps along with the meds to keep that ugly flare up at bay(if that makes sense) I was diagnosed 6 months ago and am coping the best I can with this RA so any other pointers that will help me along in my journey?

    1. Hi Heather, really sorry to hear about your recent diagnoses. I do not have personal experience with Cimzia… In fact, I was clearly wrong when I’d thought I’d tried everythng in the 9ish years since my diagnoses. You’ll have to keep me posted and let me know what you think. Starting your morning by stretching is a great thing to do. Have you tried yoga? I love hot AM yoga to get my joints started for the day. Also do your best to stay positive. I think a good attitude can help your overall well being.

  10. It’s all about keeping the imflamation down.Stress level down. And your spirits up. I choose 5 months ago to get off my meds. methotrexete. My right knee is hurting and hands and elbows stiff.I have decisions to make I don’t think I want to feel like this for the rest of my life. Rock on everyone living with RA

  11. After I initially left a comment I seem to have clicked the -Notify me
    when new comments are added- checkbox and from now
    on whenever a comment is added I recieve four emails with the exact same comment.

    Perhaps there is an easy method you can remove me from that service?
    Thank you!

  12. hi I woke up one day and could not move my hands,my feet are so swollen, my knees are in pain and everything hurts. I am going to the dr on Friday to get my results but this pain came on suddenly 3 weeks ago, and has not gone away. I want to cry, I just turned 36 and this seems too soon to have your life change completely. anybody feel the same?

    1. Unfortunately, it just happens that quickly… You live a normal life until one day you wake up and… BAM! That’s a thing of the past. I’m so sorry you’re going through this. I was diagnosed at 23 and probably had very similar feelings as you. If you ever want to talk, please feel free to email me: Katiestew18@hotmail.com.

  13. Hi again to all, its been a while since I have been able to get out of bed. I am still on Orencia and a nurse comes to my home once a month a gives me the infusion. I am also now pain patches 10mg per hour 7 days a week. My knees are the size of a football and the only thing that helps is a combination of pain killers and ice pack. Don’t know if Orencia is helping yet as it has only been about 4 months since I started it. Had another treatment today and at least I am out of that bed of mine. Katie, I will try and keep you and all informed with my new treatment, perhaps if I share my views on my new treatment it can help someone. Thanks for listening, you know that your site really does help. Reading everyone stories helps us get through our own pain.

    1. Hi Toni- How are you feeling? I really hope the Orencia has helped. I will be trying Actemra for the first time ever very soon… Just waiting on approval from insurance and my mail in pharmacy. Would love to know how you’re doing so please keep me posted.

      1. Hi guys, well its been a while now since I have been on Orencia, and I am so sad that my blood test came back with a high levels of inflammation,I am so upset about everything. You see here in Australia when I went to my Dr. I signed a contract saying that I able to try 5 treatments in my life time and I only have one left and I am 56 years old. I had a very very bad flare up this month and I explained that to my RA Dr. So back on the steroids for another week and then more blood test. This flare was pretty bad again. I don’t know what I am doing wrong. My dr. told me that’s all we can do for the moment till I get my blood results back. I am also on 20mg of pain patches and three endone’s a day to help manage the pain. You know what I don’t understand, how much pain is involved, and even with these drugs all they do is numb the pain, not take it away. I am now using a walking cane and its getting harder to walk as the pain is so bad in my hips. knees and my back. Aww well I suppose I’ll just have to keep on going. Katie I hope you get approval for your new treatment. I will let you know what happens next week when I see my Dr. Take care all and stay positive. We are only given what we can handle.

  14. Hi there! I’m at the scared I don’t know what’s wrong with me stage. Apparently nearly everything my body has experienced in the 32 years I’ve been alive have pointed at RA and I am now waiting on the results of my blood tests. My pain comes and goes but there hasn’t been any apparent swelling other than my left foot. Arthritis in both my knees in my 20’s and now my elbows are going whack. For some reason mine is not on both sides like most postings are saying. It’s predominately my left side which is my weaker side. I definitely do not want RA but at this point I’m scared if it’s not because then I have no clue what is wrong and why I’m feeling like this at such a young age. How did you cope with the “what if’s” and frightened feeling when you were waiting on diagnosis?

Hi and thanks for stopping by katiestew.wordpress.com! I will review and approve your comment shortly. If you have questions or want to get in touch, please feel free to email me at katiestew18@hotmail.com or follow me via twitter at @kstew_arthritis. Stay well!

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