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Can you have rheumatoid nodules without actually having rheumatoid arthritis?

I’m going to apologize ahead of time for my long winded post...I am extremely frustrated and confused, and honestly don’t know what to do or how to get a proper diagnosis of whatever is going on... I’m a 41 year old woman with a rather long history of medical issues...I truly believe there is a common denominator with my health problems but I’m really struggling to get anywhere with my doctors... I’ve had spinal issues since I suffered an injury at 16...I’ve had two surgeries, the second in 2011...they fused 3 levels at that time...the surgery was supposed to take 3 hours, but took 9, because of the extreme degeneration of my vertebrae...my surgeon had to place extra rods in my spine because he said the vertebrae were literally crumbling in his hands... He also advised me at my first post op appointment that he had removed several nodules from my spine to have pathology testing done...the testing confirmed they were rheumatoid nodules I was told... I’m not sure why my primary doctors never felt it necessary to investigate this further, as I’ve had countless systemic symptoms for many years... Along with my spine, I have severe degeneration in my knees and hips... In the past two years: I’ve been advised I have zero cartilage left in either knee and am in need of two knee replacements when my insurance decides I’m old enough to qualify for them... I’ve been diagnosed with severe bursitis in both hips, and also told I have very little cartilage left in either hip... Have been diagnosed with moderate to severe osteoarthritis in the entirety of my spine, both knees, both hips, both hands, and one of my feet... The joints and toes in both feet have become severely in the past 12-18 months...I’ve been told I’ll need corrective surgery in the future... I’ve had pleurisy 5 times in the past 2 years, pneumonia twice... In the past 2 years my symptoms have been progressively getting worse...they tend to come and go pretty rapidly... I’m constantly getting severe Edema in my hands, face, legs and feet...I cannot even wear socks when it happens, as the pain is unbearable... I’ve been told I have thickening of the wall in my left heart ventricle... I have painful red swollen joints basically everyday...the joints affected differ from day to day, but there’s always at least a couple affected...my joints are almost always affected symmetrically... The past few months the joints and muscles are so stiff and rigid, it takes me hours to get out of bed and become slightly functional for that day... My fatigue is overwhelming...I can literally sleep 24 hours and still feel exhausted... I have rotating sensations of burning, tingling, pain, pins/needles throughout my entire body... I have had significant vision changes, with painful dry eyes, as well as blurred vision with occasional double vision...terrible sensitivity to light very frequently... I have never ending inner ear pain in my left ear... I constantly have migraines with nausea, vomiting and horrible vertigo... I’m now getting vertigo daily, with or without the migraine... I had an extremely rare and aggressive breast tumor 18 months ago, cystosarcoma phyllodes...it grew from 2 cm to 9 in a 3 week period...it was determined to be of borderline malignancy after removal...if it had contained just one more characteristic of a malignant tumor, it would have been a full cancer diagnosis...I was told I was basically considered a stage 0/1 cancer at time of diagnosis...the tumor was very deep within my chest wall and I had about 2/3 of the breast removed, causing severe nerve damage, affecting my breast, underarm area, entire arm and hand...I was told the tumor was extremely aggressive and had it been found even a few weeks later, my prognosis would have been very poor... Three weeks ago, I found a lump in my neck...after 2 weeks, I decided to get it checked because of the breast tumor history...I’m told it’s not a swollen lymph node...my doctor ran bloodwork for my thyroid, as I have hypothyroidism already...that came back good... 2 days ago I found 2 more lumps in the same area, all on the left side of my neck... That night, my entire neck swelled up rapidly to about double it’s normal size...my entire chest, shoulder area and rib cage also became very swollen... I started getting severe chest and shoulder cramping... By this morning the swelling was completely gone...And now tonight, it’s starting to rapidly swell again, and my entire body feels as though I am on fire...I have no fever, no cough/cold, etc...I have agonizing joint and muscle pain again, and severe nausea and diarrhea...my face is red and puffy around my eyes and cheeks, I have a horrible feeling of pressure behind my right eye, and am getting short episodes of facial numbness and twitching on that side...during the episodes, I’m also getting tingling and weakness down the entire right side of my body and can only drag my foot to walk...the episodes last about two minutes and I’m getting two to three per hour... In the past 6 months my bloodwork has shown many fluctuations...I’ve had concerning levels of white cells, red cells, platelets, vitamin D, potassium, thyroid levels, as well as one positive wine negative ANA test... I’m seriously lost on where to turn...I’ve been photographing and journaling my symptoms for about 6 months because I feel as though nobody takes me seriously and I literally cannot stand it anymore... Part of me can’t help but feel like I might have RA because I have no other logical explanation for the rheumatoid nodules found in my spine during that surgery... I am angry...I feel as though I may have a disease that should have been diagnosed almost 9 years ago, and I’m now possibly going to suffer permanent joint damage in multiple joints because I’ve not gotten the proper care... I don’t have any idea what this could all be caused from, but clearly I have some systematic issues beyond the fibromyalgia I was diagnosed with about 12 years ago... Does anyone know if rheumatoid nodules can have a cause other than RA? my mind can’t help but feel that those nodules should have been investigated further for a cause... Anybody with any advice would be immensely appreciated... I will also say I have a very large family, 9 siblings...2 have MS, one of those 2 also has fibro and RA... Two more have autoimmune thyroid disease, as does my mother...and another one has Lupus...I have several extended relatives on both sides with a history of RA, Lupus and MS... Sorry for the novel, I’m just trying desperately to get a full understanding of what is going on with me...any advice is appreciated greatly...

  1. @peanuts5678 Hey, first off, know that you aren't alone any more. You've come to the right place. All of those symptoms you've mentioned I have experienced in some form to some degree, including cancer, in my 30+ years of RA. I was diagnosed at 9 and now I'm 42, and the co-morbidities, as they are called, are awful sometimes. For me, they took two years to diagnose me, and I never tested positive for any factors or blood markers, and still don't. I spent years with a very good Infectious Diseases doctor who didn't rest until he had settled on a diagnosis. There are ID doctors in every major hospital, and it might be something to possible think about visiting one if you have nowhere else to turn. I can't speak to rheumatic nodules or what causes them, but an ID doc does specialize in looking at all symptoms and trying to find an overall cause. I know that's not the answer you were looking for but it's the best I can do right now. Just know, no matter what, you can come here and talk with people who get what you are feeling. You aren't alone. Let us know what happens. Keep on keepin' on, DPM

    1. Hi @peanuts5678, you are a trooper! Wow. I am so sorry about everything you have been through. I can only imagine how you are feeling. I think Daniel has some good advice about the ID doctors as well as way more experience with RA and comorbidities. Have you spoken with your primary care doctor about the possibility of RA or why you would have rheumatoid nodules? Like David mentioned, it can take years to get a real diagnosis so make sure your doctor knows that this is something you want to look into seriously. I wish you the best of luck. Please keep us updated on how everything goes!
      Best, Franki (RheumatoidArthritis.net Team)

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