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View Full Version : Old rheumatoid arthritis fears popping up yet again



ckelley116
28-04-22, 13:33
I hate even having to type that.

Between February of 2018, after being diagnosed via MRI with tenosynovitis running rampant through my right (dominant) hand and bursitis/a ganglion cyst in my left foot, and December of 2019, I had three separate rounds of bloodwork to test me for RA or another autoimmune disorder. Almost everything came back clear - I was negative for RA/autoimmune-specific things all three times, ESR was within range, and only my CRP level was elevated. In February 2018 it was a little over 11, March 2018 it was a little over 12, and December 2019 it had dropped to 8. Nowhere near the levels I was told to expect if I did have some inflammatory disease, and the rheumatologist said it was highly likely I was in the clear.

After the tenosynovitis, which was likely to be caused by overuse (I'm on a computer almost my entire day), I haven't had any hallmark RA symptoms. No terrible pain. No visible swelling. No redness. No warmth. No tenderness. No morning stiffness. I haven't had fatigue or the flu-like symptoms so many others have experienced. The blood test in 2019 was just to see if I could in fact put all of this behind me, not because of any new symptoms. Since the tenosynovitis resolved I have felt, at least in regards to what I've been led to believe is common with RA, completely normal for 4 1/2 years.

So why do I still jump right to it every time I have an ache or a pain? Last Wednesday the underside of my left big toe started hurting, between the base of the toe and the ball of my foot. Not even in the joint, from what I can tell anyway. It's not a major pain. I'm not limping, it doesn't hurt to touch, I can pull the toe (gently) back and forth without feeling anything. If I contract my toes (like if I'm trying to crack them), I can feel it maybe 2 out of 5 times but again, it's not super painful. It's not swollen or red or tender or stiff and I don't really feel anything at rest unless I hyper-focus (which I'm trying not to do). I am doing my best not to keep doing these little checks but I am not always successful. And stupidly, I've started kind of experimenting with the big toe on my right foot the same way to compare. Now that toe is feeling similar, which is scary because one of the things common in RA is symmetry. When a joint on one side of the body is inflamed, the other typically follows. I keep telling myself that like all other aches and pains this too will resolve, but while it's happening it's so hard to believe.

I am 41 years old, getting older, and living in a human body which can be injured and which can experience weird aches and pains and other sensations. I know that and I know that not everything is a sign of something sinister. But since this RA seed was planted more than 4 years ago, I haven't been able to let it go. I just want to stop going back there every time I feel something.

ckelley116
29-04-22, 19:29
Both big toes still hurting today. It's the 10th day for the left toe, and the third for the right. The right toe actually feels more like it hurts in the joint, while the one on the left is still more concentrated to the area between the base of my toe and the ball of my foot.

I made sure to wear shoes today that don't allow me to keep "testing" them. I'm hoping that by keeping them neutral I can give them a chance to heal from whatever's going on. I'm afraid that once I change into my after-work clothes and take my shoes off, though, I won't be able to ignore them.

I started reading the "Health Anxiety Workbook" by Taylor Ham (that's so funny; where I live outside of Philadelphia, there's a popular breakfast meat called Taylor ham) last night. Hoping it helps get me back on track. I can't go through life worrying that every ache and pain is an undiagnosed disease.

PennyP123
02-05-22, 18:37
I was diagnosed with RA 32 years ago. There was absolutely no mistaking it. The onset was swift and severe. I won't go into details because I don't want to trigger anyone...suffice it to say, there was no mistaking it for myself, clinically for the doctor, or even in the bloodwork. My blood levels were not even "a little off"...it was out of sight.

Now here's the good news...if you met me today you'd have absolutely no clue what I went through. No clue at all...I promise. RA is not what it used to be with new meds coming out all of the time and old meds that are remarkable. I follow the protocol at www.roadback (dot) org and it saved me.

So here's the takeaway...everyone is different and I'm not a doctor and I don't know much...but know that for me there was no question...it was "swift and severe." Also, know this...worst case scenario...if you have it is very controllable...I'm proof of that.

I wish you perfect health...both mentally and physically.

Oh...fyi...my sister developed all kinds of pain a few years ago..they tested her for RA..obviously with a first degree relative with RA. Guess what? She doesn't have it. She has the old garden variety wear and tear arthritis. She did a little physical therapy at her doctor's office and with some good old ongoing exercise the pain goes away and stays away.

ckelley116
03-05-22, 23:45
Thanks for sharing your story, Penny, and I'm so glad you're doing so well! I have to agree that if I do end up being diagnosed with RA eventually, now is as good a time as any.

I think there are two reasons I've been unable to shake this fear. The first is that while a lot of people do have similar experiences in which there's no doubt something is going on, others sometimes take years to be diagnosed because the symptoms are so mild and vague, and blood doesn't always show autoimmune issues. I've heard countless stories now of people diagnosed with RA who experienced symptoms for years prior, but didn't think anything of them because they were so vague, until they weren't. Autoimmune disease is probably the worst thing someone with HA should fixate on! It's not like cancer where you can get a scan, be told you don't have a tumor, and move on. The other reason is because it was the rheumatologist, and not my bad Googling habit, that put the idea in my head. I will admit I did Google when I was told I had tenosynovitis because the surgeon who diagnosed me gave me absolutely no information as to cause/treatment/etc., and I wanted to know how to get my hand back to normal and prevent it from happening again. One of the first things I read was that it was common in people with diabetes and RA. I knew I didn't have either of those, so I didn't fixate on them. But when the rheumatologist saw my MRI and the first words out of her mouth were "does anyone in your family have rheumatoid arthritis", the seed was planted and has been there ever since.

I do remember reading that a significant percentage of people with tenosynovitis get diagnosed with RA within 5 years. I don't remember the percentage and I refuse to look it up. I've been telling myself that once I hit the five-year mark this winter I can stop worrying, and I hope when it does I'm at a point mentally where I can follow through with that.

PennyP123
05-05-22, 18:01
I understand your fear and concern...otherwise, I wouldn't be on an HA forum...LOL. As I mentioned check out roadback(dot)org - keep that info in your back pocket. I don't think you'll ever need it...but if you do it's there. Hold onto the knowledge that even if you have RA in the future...which I don't think you will...it is highly treatable and controllable. It's not what it used to be. I wish you perfect health. Hang in there.