Newly diagnosed--Have question about pain management
Tomorrow I will have my 5th injection of Enbrel. I take this with Celebrex, which I don't feel is helpful. I was less than a month into a brand new job when I experienced my first flare. It was pure hell. I couldn't call in sick, take time off work or tell anyone I felt like the life was being sucked out of me all while experiencing inescapable pain. In hindsight, I now see that I literally muscled my way through a flare not knowing what it was. After about 2 weeks on Enbrel, the fog lifted and I experienced significant pain relief, but I feel like I might have hit a wall in terms of progress. Today, the pain was so bad I was in tears, again-- the pain still wakes me up at night, I cannot do simple things like squeeze a sponge, lift a mug, cover myself with a sheet, etc without significant pain. I am tough, but I have my limits. I am curious to know what is a reasonable amount of pain to endure. I am not one to cry, and to be reduced to tears because of the burden imposed on me from inescapable pain is highly unusual. Am I supposed to just deal with this and get used to it...is this life with RA, or can I anticipate a life w/o pain once I find the appropriate treatment? What are some pain management suggestions. I find myself clinging onto, or resting my hands on anything that is the slightest bit cold, and I hate the cold. I despise narcotics, but are these effective in treating pain associated w/RA?
kingkatekong,
Thanks so much for writing to us in our forums. We are sorry to hear abou the pain and swelling you are experiencing.
While everyone's RA pain is different you certainly are not suppose to just get use to it. There are some ways that may help manage your pain. Many people find this article helpful on tips and tricks for managing pain: https://rheumatoidarthritis.net/living/community-ideas-managing-pain/ Sounds like the cold may help you, but I am sure you would rather be pain free then keep on using the next cold thing you see. Here's aother article I think may resonate: https://rheumatoidarthritis.net/living/pain-increase-sensitivities/
Addiitonally, we do encourage you to speak to your Dr about a treatment plan that works for you, different treatments do work differently for everyone, but it may be something to consider. I thought this article would resonate with you: https://rheumatoidarthritis.net/living/when-is-it-time-for-a-new-treatment-plan/ as well as this article: https://rheumatoidarthritis.net/living/finally-the-right-mix/
If you haven't been to our Facebook page, the commnity there might be able to give you some additional support.
Reach out to us anytime and we wish you all the best,
Lauren (RheumatoidArthritis.net Team)Thank you for the thoughtful reply. I see my rheumy this week and have already written down a series of questions to ask--pain management being at the top of the list. I'm thrilled to learn that you are able to control your pain with Aleve. I had asked about methotrexate and he seemed to think biologics were better? I'll inquire again. I don't know what my SED rate is...I just know that for the longest time my labs have been normal, but my joints are jacked and the fatigue is indescribable-though much better since the Enbrel.
Thnx again!
Kate
Hi KingKateKong. Short answer, no, that is not what well controlled RA feels like. I am sorry you are going through this. It is hard enough to get through this phase without having to worry about keeping a new job, not having time off, trying to make a good impression, be upbeat and knowing you aren't protected by the Family Medical Leave Act for the first year. I remember those days. I don't miss them.
Are you just on Embrel and Celebrex? Did they try methotrexate or give you a reason that it wasn't a good idea for you? They started me on Plaquenil, then added Imuran. I developed liver toxicity on the Imuran, so they took me off of it and my liver went back to normal. During all of this I was in tremendous burning pain and could barely take care of myself. I was on narcotic pain meds. They added methotrexate and things got better. I was able to walk and get up off of the couch without assistance, but still on pain meds. All of this time I was unable to work. My SED rate was near 70. I finally told my doctor that I needed more relief and my goal was to get off of narcotics. He started me on biologics in addition to the other meds and things progressively got better. Do you know what your SED rate is?
I am off the narcotics for 5 years, currently on Xeljanz, and my last SED rate was 32. All I take for pain is Aleve. My doctor had me switch to that because he said naproxen sodium worked best on RA.
I think sometimes doctors don't realize how bad it is because your joints don't appear hot or swollen. That was the case with me, but when I spoke up, he was receptive. I was on my 3rd Rheumatologist before I found one that seemed to be concerned about my quality of life.
I would suggest that you speak up and see what happens. If you don't get any further help, consider getting another opinion. I had my best luck at a university hospital.
You are your best advocate. Things do get better. Hang in there.
KTIt has been a frustrating year. We are now on methotrexate which does help and steroids but, my question is will there always be pain. Should I expect it? With methotrexate I'm at least able to get out of bed and not feel like I've stepped on gravel, but still have burning in knees &feet. Hands and wrist no longer feel light tight gloves. I'm just not sure of what is now considered normal....
Hi Sherri4. What you describe isn't well controlled RA. I'm on methotrexate (MTX) and I take 25 mg injectable. I think you need to be on your final dosing level for 3 months before you can tell how it is working. From there, my doctor added a biologic because MTX alone wasn't enough for me. We tried several but settled on Xeljanz. Again, it took a few months before we could tell if the meds were working.
Now, I can manage my pain with OTC Aleve. I can't run marathons or do 'normal' things people my age do, but I'm not in the constant pain you are talking about. I have break through pain when I do too much and I can still have the occasional flare, but compared to how I used to be, I can't complain.
Give it time, but communicate with your doctor. If they aren't willing to treat you aggressively, consider getting a new doctor. Pain means active disease. Active disease means irreversible damage is being done. That is permanent. It can also be doing stuff to internal organs you can't see. My lungs are full of rheumatoids.
You are your best advocate. Be brave and hang in there.
KT
