Comments on: Rheumatoid Arthritis Swelling: My Confession http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/ Bringing information & encouragement to fight RA Fri, 10 Feb 2012 20:28:38 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: sue http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-4/#comment-174881 sue Sun, 05 Feb 2012 23:00:17 +0000 http://rawarrior.com/?p=3505#comment-174881 I have stiffness and pain everyday..but only have swelling ocasionally.My new rhummy made comment on this on my first visit.felt as thou he felt i was a fake..like why would you!! I have stiffness and pain everyday..but only have swelling ocasionally.My new rhummy made comment on this on my first visit.felt as thou he felt i was a fake..like why would you!!

]]> By: Andrea Pappalardo http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-4/#comment-174424 Andrea Pappalardo Sat, 04 Feb 2012 21:24:37 +0000 http://rawarrior.com/?p=3505#comment-174424 I have next to no external swelling. My joints are never hot and red. A little swelling in ankles and knees on occasion but i always have some level of pain in the majority of my joints. The difference now after 10 years is the visible change in hands and feet due the joints becoming deformed and ligaments becoming lax. I've always been RF- and my SED rate has been normal since starting biologicals. I've been lucky however with my Rheums. I've had 3 and they always believe me and do blood work after the office visit, not before. I was even treated aggressively even while I was considered undifferentiated. I have next to no external swelling. My joints are never hot and red. A little swelling in ankles and knees on occasion but i always have some level of pain in the majority of my joints. The difference now after 10 years is the visible change in hands and feet due the joints becoming deformed and ligaments becoming lax.

I’ve always been RF- and my SED rate has been normal since starting biologicals.

I’ve been lucky however with my Rheums. I’ve had 3 and they always believe me and do blood work after the office visit, not before. I was even treated aggressively even while I was considered undifferentiated.

]]> By: Catherine http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-4/#comment-174099 Catherine Sat, 04 Feb 2012 04:16:38 +0000 http://rawarrior.com/?p=3505#comment-174099 I have had RA for 20 years. I have never had any swelling to speak of but have had huge amounts of pain and stiffness. The RA specialist I first saw said that most young RA doctors would not see any signs of RA in me. However I test positive for RA and do have significant polyarthritic pain. Generally people think there is nothing wrong with me and don't understand when I am fatigued or feel too much pain to go out. It is frustrating at times. I have had RA for 20 years. I have never had any swelling to speak of but have had huge amounts of pain and stiffness. The RA specialist I first saw said that most young RA doctors would not see any signs of RA in me. However I test positive for RA and do have significant polyarthritic pain. Generally people think there is nothing wrong with me and don’t understand when I am fatigued or feel too much pain to go out. It is frustrating at times.

]]> By: Kelly Young http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-4/#comment-174048 Kelly Young Sat, 04 Feb 2012 02:02:25 +0000 http://rawarrior.com/?p=3505#comment-174048 Your doctor must be up on current research! That is exactly what has been found in most cases, as shown by MRI or ultrasound studies! (as shown in part 2 of this post) Thanks for posting, Jen. Your doctor must be up on current research! That is exactly what has been found in most cases, as shown by MRI or ultrasound studies! (as shown in part 2 of this post)
Thanks for posting, Jen.

]]> By: Jen Cochenour http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-4/#comment-174016 Jen Cochenour Sat, 04 Feb 2012 00:07:59 +0000 http://rawarrior.com/?p=3505#comment-174016 I do not have swelling all the time - not anymore at least. It seems like at first the swelling and pain went hand in hand. Now that I am on more intense meds, the visible swelling is less common. I do notice it here and there in random joints though. Since my diagnosis in April 2011 my CRP has ranged between 0.6-1.2 (<0.5 is normal) and my sed rate has ranged 11-20 (all in normal range <21). When I was 1st diagnosed my Dr indicated I was basically swollen from head to toe- obviously my numbers didn't reflect the swelling but the pain was very overwhelming. I think I am very lucky in the way that my Rheum Dr has never once questioned my pain. In fact, at my last appointment, my Dr mentioned that she did not feel any swelling in my joints anymore and was very excited- yet at the same time she up'd my Humira from bi-weekly dosing to weekly. She offered the explanation that the swelling is more just internal now and would be visible by certain imaging procedures but not by her feeling it. Never once did she say it was in my head now or try to tell me that I am in remission when we both know I am not as pain is still present. I do not have swelling all the time – not anymore at least. It seems like at first the swelling and pain went hand in hand. Now that I am on more intense meds, the visible swelling is less common. I do notice it here and there in random joints though. Since my diagnosis in April 2011 my CRP has ranged between 0.6-1.2 (<0.5 is normal) and my sed rate has ranged 11-20 (all in normal range <21). When I was 1st diagnosed my Dr indicated I was basically swollen from head to toe- obviously my numbers didn't reflect the swelling but the pain was very overwhelming. I think I am very lucky in the way that my Rheum Dr has never once questioned my pain. In fact, at my last appointment, my Dr mentioned that she did not feel any swelling in my joints anymore and was very excited- yet at the same time she up'd my Humira from bi-weekly dosing to weekly. She offered the explanation that the swelling is more just internal now and would be visible by certain imaging procedures but not by her feeling it. Never once did she say it was in my head now or try to tell me that I am in remission when we both know I am not as pain is still present.

]]> By: Cindy http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-4/#comment-173985 Cindy Fri, 03 Feb 2012 22:06:01 +0000 http://rawarrior.com/?p=3505#comment-173985 Oh, I forgot to mention that they found my RA from aspirating my knee before giving me a cortisone shot for pain after my whole body got slammed pretty suddenly. When I have had to stop the mtx due to a surgery or infection within 2 months I can't grip anything, get down to the floor without falling and I have to crawl up on my elbows to get to the couch to crawl my way up off the floor. After being back on mtx for a few months I am back to my "normal" which was a sign that it was RA as well as the joint damage that can be seen on x-ray in my wrists. Oh, I forgot to mention that they found my RA from aspirating my knee before giving me a cortisone shot for pain after my whole body got slammed pretty suddenly. When I have had to stop the mtx due to a surgery or infection within 2 months I can’t grip anything, get down to the floor without falling and I have to crawl up on my elbows to get to the couch to crawl my way up off the floor. After being back on mtx for a few months I am back to my “normal” which was a sign that it was RA as well as the joint damage that can be seen on x-ray in my wrists.

]]> By: Cindy http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-4/#comment-173983 Cindy Fri, 03 Feb 2012 22:02:04 +0000 http://rawarrior.com/?p=3505#comment-173983 I have had very little swelling throughout my decade of RA. My CRP and sed rates are usually in the normal or not too bad range. I've been on mtx (25 mg) for 10 years. I mostly had one staff doc at the VA (disabled vet) and he could detect the slightest swelling and said that was just how my RA manifested itself. He was very good and cared about how I was doing and wanted me to have improvement. When he trained in new docs/PA/interns at the VA he would have them examine me first and then tell him what they found. Not one ever found signs of active RA/swelling. Then he would examine me and explain to them what they missed. Unfortunately when he left I got one of those PA interns. After a year I finally got assigned to another staff VA doc (very hard to get) and she is very knowledgeable, no-nonsense but I feel confident that she is interested in helping me get the most relief and care possible. I've only seen her twice so far. I have had very little swelling throughout my decade of RA. My CRP and sed rates are usually in the normal or not too bad range. I’ve been on mtx (25 mg) for 10 years. I mostly had one staff doc at the VA (disabled vet) and he could detect the slightest swelling and said that was just how my RA manifested itself. He was very good and cared about how I was doing and wanted me to have improvement. When he trained in new docs/PA/interns at the VA he would have them examine me first and then tell him what they found. Not one ever found signs of active RA/swelling. Then he would examine me and explain to them what they missed. Unfortunately when he left I got one of those PA interns. After a year I finally got assigned to another staff VA doc (very hard to get) and she is very knowledgeable, no-nonsense but I feel confident that she is interested in helping me get the most relief and care possible. I’ve only seen her twice so far.

]]> By: Chris N http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-4/#comment-173968 Chris N Fri, 03 Feb 2012 20:59:40 +0000 http://rawarrior.com/?p=3505#comment-173968 Hey Kelly, Thank you so much for all you do!! I was diagosed with ra five years ago, right after my 40th bday and Fibro a year ago. I have an aunt who also has ra,she also was diagnosed at 40. Until early last year I was able to basically "ignore" it but in February I had a MAJOR flare and I couldn't function for 6 weeks. I never really recovered,I have not been the same since. This has been the hardest thing I have ever gone through. I was SO desperate to find some answers and just find proof that I wasn't crazy and I found your website, you were a Godsend!! You have encouraged me in so many ways but especially to better educate myself on this horrific disease. ANYWAY, this has been the first time I have commented on here so here goes... My hands and wrists are the worse. I had an MRI done on my right hand wrist in Aug. and it showed significant deteriation. I have constant pain and on again/off again swelling. I wear a wrist brace most of the time. I had to also stop wearing my wedding ring because it gets so tight and is very uncomfortable to wear. That was a very sad day!! I also have TERRIBLE fatigue and have started having sleep issues that I have never had before. Brain fog is also a big issue. I get horrible swelling and pain in my shoulders because of bursitis. I saw the comments about bra straps and swelling.... So true, bra straps are so painful. Icing my shoulders help, (PT suggestion), but I have also had to have cortisone shots in both shoulders because the pain would get unbearable. My ankles also swell up and are painful if I'm on my feet too long. I am currently on 3 meds for ra, one of those meds I just started in September because pain and swelling were so bad. I have tried many pain meds, but my body doesn't handle pain meds too well. So my ra dr said I could take 2-4 Aleve a day, as needed. I take at least 2 a day, it only takes the edge off the pain. I have a great rhuemy, but you taught me how to ask her the right questions and get the best results from her. Last month my blood work was the best it has ever been and I had no swelling,so the new meds fixed that, but I still have pain all the time. Sorry this was so long!! Hey Kelly,
Thank you so much for all you do!! I was diagosed with ra five years ago, right after my 40th bday and Fibro a year ago. I have an aunt who also has ra,she also was diagnosed at 40. Until early last year I was able to basically “ignore” it but in February I had a MAJOR flare and I couldn’t function for 6 weeks. I never really recovered,I have not been the same since. This has been the hardest thing I have ever gone through. I was SO desperate to find some answers and just find proof that I wasn’t crazy and I found your website, you were a Godsend!! You have encouraged me in so many ways but especially to better educate myself on this horrific disease.
ANYWAY, this has been the first time I have commented on here so here goes… My hands and wrists are the worse. I had an MRI done on my right hand wrist in Aug. and it showed significant deteriation. I have constant pain and on again/off again swelling. I wear a wrist brace most of the time. I had to also stop wearing my wedding ring because it gets so tight and is very uncomfortable to wear. That was a very sad day!! I also have TERRIBLE fatigue and have started having sleep issues that I have never had before. Brain fog is also a big issue. I get horrible swelling and pain in my shoulders because of bursitis. I saw the comments about bra straps and swelling…. So true, bra straps are so painful. Icing my shoulders help, (PT suggestion), but I have also had to have cortisone shots in both shoulders because the pain would get unbearable. My ankles also swell up and are painful if I’m on my feet too long. I am currently on 3 meds for ra, one of those meds I just started in September because pain and swelling were so bad. I have tried many pain meds, but my body doesn’t handle pain meds too well. So my ra dr said I could take 2-4 Aleve a day, as needed. I take at least 2 a day, it only takes the edge off the pain. I have a great rhuemy, but you taught me how to ask her the right questions and get the best results from her. Last month my blood work was the best it has ever been and I had no swelling,so the new meds fixed that, but I still have pain all the time. Sorry this was so long!!

]]> By: Mr. C. http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-3/#comment-173965 Mr. C. Fri, 03 Feb 2012 20:54:49 +0000 http://rawarrior.com/?p=3505#comment-173965 Kelly, thank you for all of your hard work and all of the information on your website. I am thankful that my RD is one of the good ones. Otherwise I'd have to be hunting for another one or simpley miserable. I am also glad I only have my meds and health to worry about (with RA/RAD that is), instead of what the doctor will or won't do. Any time I call he calls me back within a few hours maximum. I'd be quite upset to have my ring cut off, after it started getting tight, I seldom sleep with it on, I figure at least if I'm awake I'm more likely to notice before it's to late. Kelly, thank you for all of your hard work and all of the information on your website. I am thankful that my RD is one of the good ones. Otherwise I’d have to be hunting for another one or simpley miserable. I am also glad I only have my meds and health to worry about (with RA/RAD that is), instead of what the doctor will or won’t do. Any time I call he calls me back within a few hours maximum. I’d be quite upset to have my ring cut off, after it started getting tight, I seldom sleep with it on, I figure at least if I’m awake I’m more likely to notice before it’s to late.

]]> By: Kelly Young http://rawarrior.com/rheumatoid-arthritis-swelling-my-confession/comment-page-4/#comment-173921 Kelly Young Fri, 03 Feb 2012 18:58:18 +0000 http://rawarrior.com/?p=3505#comment-173921 Number 4: same here. exactly the same. nothing but prescriptions has ever been offered to me. Not even suggestion of ice or heat or injections. Number 4: same here. exactly the same. nothing but prescriptions has ever been offered to me. Not even suggestion of ice or heat or injections.

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