Weird RA Symptoms - So Much More Than Joint Pain
I am curious to hear about everyone's "weird" symptoms that aren't normally talked about with RA... at least outside of this community anyways 😉
For example, I occasionally experience swelling in my lips. I have never met another person with RA who experiences this, but I have been told by a couple of different rheumatologists that "its just one of those things that could definitely be associated with RA". I also have developed Rosacea as a result of this autoimmune disease as well as tendon pain and tissue swelling, electric-shock type feelings that occur when swelling is so bad it starts to compress the nerves, secondary sjogrens, costochondritis, I think the list might be endless!
Since RA is a systemic disease, it is always interesting to hear others experiences with all the things that they go through. So often I will voice a complaint about something hurting or something that I think is a little out of whack and my husband will say "oh, what did you do?" but really I didn't do anything - its just one of those things!
Anyone else go through anything that would be considered a strange or weird symptom to someone who might hear RA and only think joint pain?
I’m fairly lucky that I don’t have a ton of serious joint involvement with my RA. Most of my issues are not bilateral which is odd also. However I have a lot of tendon issues. For the past few months I have been dealing with tendinitis of my IT band which runs from your hip to your lower leg. It has been the most painful thing I have experienced. My doctor gave me a shot a few weeks ago which have given me some relief which I am grateful for. I also have Sojogrens. It’s a strange disease that difficult for people to understand.
Hi
. Sorry you have these tendon issues. RA definitely can impact the connective tissues, In addition, have you and your doctor ever discussed connective tissue disorders. This article from our editorial team discusses mixed connective tissue disease: https://rheumatoidarthritis.net/mixed-connective-tissue-disease and this one undifferentiated connective tissue disease: https://rheumatoidarthritis.net/undifferentiated-connective-tissue-disease. Of course, only a doctor can provide the proper diagnostics. Hoping you get some answers and relief soon. Best, Richard (RheumatoidArthritis.net Team) wish my doctor would listen to him or what I have to say what I tell him that my elbows hurt and my fingers or my wrist and my ankles Etc. It's kind of dismissive sometimes well that's this or that could be that will if it's my tendons I don't play tennis I'm not actively doing anything it must be something instead there's no discussion or detail about what or how to handle it. It's very disconcerting. Thank you for providing this forum.
Hi
. You certainly are not alone in experiencing weird symptoms, whether from RA. a comorbid condition, or as medication side effects. I pretty much don't even know where to begin, so I just want to share with you this search of our archive on the word "wierd," which brings up multiple articles from our contributors and community members discussing the various odd symptoms that come up: https://rheumatoidarthritis.net/search?s=weird. This community understands. best, Richard (RheumatoidArthritis.net Team) Hello kelseyhaus....I'm so happy that I am not alone with your symptoms. I suffer from many of the same you do. It is so helpful for me to know others have the same symptoms.
I had a pleural effusion (aka pleurisy) and partially collapsed lung. Was hospitalized for a week - tethered to a machine via a hose in my back - as it had to be drained slowly to prevent further lung collapse. The fluid was biopsied and was rheumatoid fluid!
I have the tingling you describe in my L wrist hand and arm and am sure it is because of elbow contracture that is no doubt pinching nerves.
I also have annual HIVES. Every August it starts out looking like a mosquito bite or a couple of bites. But it lasts for WEEKS! The old ones flatten out and the reddish area become larger and new ones form over most of the month, sometimes into Sept. I have been to several allergists and dermatologist. Had biopsies done and it is an allergic reaction of unknown source – attributed to autoimmunity.
