Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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swelling of the lymph notes

mckvirginia
mckvirginia
I'm just wondering if anyone gets swelling of lymph nodes when having a flare or particularly challenging time. I have always had what I consider to be excessive swelling, especially under my neck since I was a kid and had a really bad case of mono. I always assumed that mine are just extra sensitive to fighting something. Lately, though, when I am having what I consider for me to be a flare (increased swelling/redness of joints, more joints affected, steam roller running over me a couple times a day, etc.) the lymph notes swell a lot and ache. The ones under my jaw make it hard to chew. Just curious if it is my own personal weirdness or possibly connected to RA.
mckvirginia
mckvirginia
nodes....sorry
carrottop50
carrottop50
yes on the swollen lymph nodes...They seem to stay swollen all the time but some times they swell so bad that like you my jaws hurts really bad. I too had mono a long time ago. I also have Sjogren's and I think that is what causes my lymph nodes to swell. RA and Sjogren's seem to go together for some folks. Has your doctor run some blood tests such as ANA, anti-SSA and anti-SSB for Sjogren's? With Sjogren's I also have very dry mouth and dry eyes. Some nights I wake up with not one drop of saliva in my mouth... Talk to your doctor about it. Hope the flare settles down soon.
cap1972
cap1972
Agreed! It's nice to know others have the same thing. The worse I'm feeling, it seems like the larger it swells on the side of my neck. What a pain...in the neck!
mckvirginia
mckvirginia
Carrottop, I had labs drawn in April 2015 when I first went to my PCP with concerns about how I move. I am 44 and I get up and walk around like I'm 84! She thought all of my symptoms sounded like RA and took labs for RAF and ANA and Lime. ANA and Lime were negative. The RAF was only 7. She said that it is usually low in the first stages of the disease and sent me to a Rheumatologist. The Rheumatologist said that she didn't see any signs of inflammation (weird because my fingers and toes are all twisting around, and my joints are all swollen). She said it was OA, scheduled me for a follow up in 6 months, and told me that there is nothing anyone can do about OA so there is no need to come back unless I really want to. I'll admit, I was very discouraged and felt dismissed. I didn't go back in December to my appointment. But my symptoms are worse. My toes are now forming humps on them and hurt all the time, my fingers and wrists hurt all the time. I don't know what Sjogren's is, but I have the dry eyes for sure. Sometimes when I blink it feels like my eye balls are folding over under my eye lid. The episodes that I can only call a flare take it all out of me and I have to really push myself to get through. Its like I am sick with a horrible flu without the flu. About a month ago my jaw hinges started really hurting off and on. The lymph nodes swelling and hurting happens almost daily, and right now with this extra flaring, they are huge and sore and interfering. I did make another appointment with the RA for the end of June. My gyn also thinks it is RA and my daughter and a good friend are both very insistent that I go back and advocate a little better for myself. I definitely feel like life is limited as it is now. I'm gaining some confidence on this board. I hate confrontation with drs, tho...they always talk to me like I am 2. The rheumatologics said my bloodwork showed I was anemic and maybe that is why I am feeling fatigue. My PCP said my anemia is very slight. It feels like they both are saying, you have no fatigue, you are just a hypochondriac! There is no swelling in your joints, they are all growing pockets on them! Won't that be nice to store all of your extra things!
carrottop50
carrottop50
So sorry you are having so much pain and discomfort. I too would say like your daughter and friend to stay with this and keep talking to your doctor until you get some answers. Or even change doctors if you are not happy with the one you have. I think a lot of folks are treated the way you have been and sometimes we do need to be a better advocate for ourselves. Hey even take your daughter with you to your next appointment she may make the doctor understand better then you can. I take my hubby with me and he has helped a lot at times. Sometimes I forget all the things that have been going on in between visits if I have had some bad flares during that time. Maybe keep a journal of the things you are feeling so you will be able to tell your doctor what you have been dealing with. Hope you can get some answers soon. Did your doctor happen to do a blood test called anti-CCP... that is usually a good one to have done. It is a newer test then the RF blood test and it is use to diagnose RA also. That was the one test that showed I was positive. My RF is normal.

I see that RASally posted where she has done some research on RA
which you can check out on Daily Strength and there are other documents people have uploaded. She wrote a pretty thorough document about how RA is diagnosed - some of the tests, the normal value ranges for blood work, tips about x-rays versus more advanced imaging.

Read her post here: http://www.dailystrength.org/c/Rheumatoid_Arthritis/forum/21663085-new-people-ra-diagnosis-paper