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The swelling of my joints will go down sometimes.
Even when it does the pain is still there,sometimes even worse.
Having a hard time to get med’s to help.
Not sure what to do anymore.
I really do need some help.
Thank You Kelly
I understand Robert. All the symptoms of inflammation or disease activity are not always present at the same time in tbe same intensity.
It’s simple to understand if you actually live with that.
The remaining pain helps me to understand. My pain continues even though the swelling is less. Sharp pains that drop your jaw because of the severity. Thank you
Thank you for this post. Each day I wonder how much pain is “acceptable”. If I can scuttle along the floor and walk to the bathroom without wanting to cry, it’s a good day…Obviously, I haven’t found my magical medical cocktail yet, but I often wonder when I do, will I know it and how pain free can life be? This post gives me inspiration to continue to fight for less pain. I continue to have severe inflammation and take 15 mg of prednisone daily in additon to plaquenil and humira. My doctor really wants me off the prednisone, but I cant get below 15 and resemble a human. My prednisone dependency is scary and real, but that’s another topic altogether. I have recently developed nodules (left wrist and both elbows) and also have scleritis in both eyes. I am guessing these new developments along with my ongoing daily inflammation mean my disease activity is high.I have my next appointment with my Rheumy on the 24th and amgoing to discuss some of these topics with him. Thanks for tackling this important topic.
I just have to ventilate today. Had to have oral surgery. Doctor ordered me off my Methotrexate before surgery. I feel like i’m starting all over with RA. I have absolutely no energy and in pain. No swelling cause still on Prednisone 4mg every other day. It’s made me depressed, angry,so very tired and everything hurts. Right now i’m fighting right and left achilles tendonitis. The oral surgery was to remove a hard area from my mouth they thought was cancer. Thank God it isn’t, but led to a new diagnosis of chronic sialoadenitis. Very rare,of course and it probably will come back. I know i’m very blessed and normally don’t complain. It’s nice to talk to people who understand. After 12 years I can finally say, my name is Karla Richardson. I have RA and I need Methotrexate. Not easy for me. Tired of fighting this. God bless you all. Thanks for listening.
Kelly I love this follow up, an incredibly thorough and well researched piece, I’m tempted to print off & take to my rheumy 😉 In all seriousness I’m looking forward to part 3. Just one thing I’d mention regarding steroids being used as a partial diagnostic tool, my first rheumy told me categorically that because I didn’t respond to pred I must be imagining my pain!!
As you can imagine I was at first distraught and then angry. I hit the Internet and after some research found that up to 30% of RA patients are known as ‘steroid resistant’ – meaning they will have no effect on inflammation or disease activity.
I was so relieved, she had me thinking I was going crazy! I changed my rheumy xx
Hey Denise thanks for the discussion. Steroid resistance is very rare. But tolerance levels often vary. I know about this because like you I did not respond to my first prescribed dose. AND, to top it all off, steroids themselves vary (there are numerous versions). There are 2 RAW articles in particular that I think could help with these points. Ill get to my computer to post you the links. I think there are a couple dozen here on the topic plus the valuable discussions on the comments pages.
Just click the arrow where it says list of all topics near the top right and click on prednisone to see them all
This one http://www.rawarrior.com/prednisone-dosage-case-study/ uses mostly my own story about dosing. I learned that it took a higher dose to get a noticeable response. So don’t give up. Of course you are not imagining it. At least that drove you to tell your story with others.
Also injections can be a better route – I’ve had dozens. There can be less systemic side effects to direct joint injections and they can be very effective.
On the way different steroids can work differently in even the same person. I can attest to this as I think I’ve had 6 different steroids injected at this point. They are different in effectiveness and side effects.
http://www.rawarrior.com/prednisone-versus-prednisolone-the-same-for-everyone/
Also don’t forget what I mentioned in #12 – there can be direct effects on nerves and bones that can be painful / damaging but may not be related to inflammation. You can check out that footnote and I’ll hopefully be able to write more on that soon.
I hope this helps
Bi weekly Humira and weekly Methotrexate injections. Still have pain – stiffness – fatigue.
Same thing with Enbrel – am I expecting too much? Is there ever a perfect cocktail?
My joints rarely look red swollen or anything but normal even when they feel like they are on fire.
Hi Kelly,
I have been through seven different biologics and using prednisone every day for the last five years for my rheumatoid/Sjogren’s (autoimmune issues). I can’t tolerate NSAID’s or Methotrexate. I live with chronic pain every single day of my life. It does not stop! I just had major surgery, an ileostomy. I had severe Diverticulitis, it perforated. I went to the emergency room with terrible pain in my stomach and ended up staying eleven days. My point is, we RA’ers are so used to living with pain that we sometimes don’t know the seriousness of it until it practically kills us. It’s sad and very scary.
Thanks for this post! I just got all of my bloodwork back and it’s “within normal range” for the first time in two years. However, I still have pain and swelling. I actually don’t feel any different than I did when all my blood test results were really really bad. I still have a low fever too. I’m realizing that the meds really just lower my blood work numbers. I’m pretty convinced that it’s not actually doing anything to my RD. However, reading this post made me feel like I’m not crazy or alone and I appreciate that. Thanks for all you do!