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...
What's the worst part for you? Is it the pain, stiffness, both, explaining to friends, fatigue etc.?
I know for me at least at this moment, it's the "unknown"? From day to day I don't know how I'm going to feel. Let me start off by saying I know my situation & my history with this disease actually not bad at all (so far). I'm only 3 years into it & as I've mentioned before with the guidance & okay from my Rheumy we stopped all RA med's. In December I had -0- stiffness, -0- redness or swelling & a pain level of 0-1 on less than 3 joints at any given day with no large joints affected. My Rheumy has always considered me minor to moderate RA.
So here I am in July & I've had a moderate flare up starting in May & which lasted until about 3 weeks ago, it all subsided & then started again slightly about a week ago.
Everyday I wake up with the same routine, I open & close my hands/fingers to test any stiffness, I pull on & off my wedding ring to see if there's any swelling & then I gauge if I'm having any feet or toe issues which is very rare if ever.
Typically if I have any stiffness at all it's maybe a level 1 or 2 & it's gone by the time I take a shower before going to work.
But in the end I'm almost always worried, "Am I at the beginning of it coming back, is it just a long flare up, what if it truly comes back & the med's no longer work, or is it on it's way out, maybe it will completely go away". Everyday this comes up in my head. Will this flare get worst before my big trip or get better, will I have to completely cancel the trip or just take it easy. Why are my enzymes so high if I'm no longer on MTX or any other med, was it the Aleve, the working out?
And I totally get it that some of you are probably saying, "I'd love to have your RA issues", trust me after reading some of your posts I know things could be worse but it doesn't mean I can't look for things to be better either.
So what say you all?
I've heard that I'm one of the lucky ones, to be on a drug that's still working after 5 years. So there's always the worry that at some point it will be ineffective for me. But then I tell myself there will be a hundred other choices [hopefully] to choose from. And maybe they'll get smart and start doing DNA profiling with respect to drugs - determine which one works best for your DNA type.
This is a time consuming disease, even if you are in remission. For example, 15 years ago a smart Costco optometrist saw something odd when she examined my eyes and sent me to an ophthalmologist. Turns out I have "macular pucker." No symptoms at all! So the ophthalmologist checks it once a year. Three months ago something went crazy with the right eye. I now need surgery for the macular pucker.....and I have a macular hole. The recovery isn't pleasant.
None of this is related to the RA or the drugs I take.....it is probably congenital. But it means more doctor's appointments, another surgery, another............
But you know what? It is what it is and I'm just thinking forward to when it will be better. And it will be.
[All the more reason to get this new website fixed so that I can read it! :-) ]
Its weird that you mention remission because before this disease I always thought remission meant it is completely gone, meaning you're back to where you were the day prior to everything going crazy & haywire. But I guess with RA that's NOT the case. My doc says he feels I'm in a possible remission but how is that if I still "feel" the RA?? I know I'm lucky so far because I feel about 98% well & that's while being off the RA medication but I want 100% LOL!
I'm glad you were able to go proactive & find the problem! Good for you! My PCP when I first went to him didn't think I was RA positive. I researched heavily for a few weeks & told him I wanted to take the lab work tests to make sure. Even after HE received the lab work he didn't believe it or maybe he didn't understand the results, luckily he still referred me to an RA specialist & low & behold ta daaa! I was normal on everything EXCEPT my CCP which was high. My PCP is actually a really good doc that I've been going to for over 20yrs & has solved many little issues, it was just this stumped him. Live & learn I guess?
I've had a lower lumbar bulge since I was 20 & it's never really affected me as much as AFTER i stopped the MTX. I stopped in Dec 2015 & in around late February I was having lower back issues. I do lift fairly heavy at the gym so I thought was the issue but I've gotten better before within 2-3 weeks of physical therapy but this round it's been 3months & I'm still not 100% so although the literature states RA doesn't or shouldn't affect the lower L1, l2, l3 region there are other areas like the cervical spine are that it can & our spine is like a big domino chain. One area if gone untreated can affect other area's like a ripple effect.
I shouldn't even be posting right now, I am so tired. So maybe I will try and think of something nicer to say, and how I can handle the pain, the med failures because I am as tough as nails? Right?
I just had an MRI in April. I've had back issues since I was 20 due to a work related injury but it only rears it's ugly head if I do something very, very strenuous like moving a fridge or something like that. on the MRI in April it was discovered that I had a slight bulging disc & my Ortho said it wasn't a "re-inury" but it's an old injury with layers of fibrous tissue surrounding it, meaning it was healed over but he see's inflammation around it as well.
Upon waking up lately I notice I can't even "crack" my back so that's a sign (at least for me) that it's RA affected because I have a habit of cracking my knuckles, back etc & when I can't do it, it means that area has become affected. I'm not sure why the joint cannot adjust or crack but I will ask about & it sure does sound pretty close to whats going on. When I was on MTX I had no back issues at all, even when working out at the gym with heavy weights.
I'm sorry to hear about your fatigue. Is it there EVEN with the meds? Or is it a combo of the RA & Meds together that causes the fatigue. I remember when I was first on MTX at the standard dose for 1st timers which was 15mg it just KO'd me on the day I took it.
It was so bad that I have a "friend" who has not spoken to me in 2yrs because I missed his daughters high school graduation party which was on a Sunday & is the day that I used to take my MTX. Once we reduced the MTX down to around 10mg I was good & now I'm totally off. But a bad flare up caused me one day to just be KO'd again. So for me it can be the med's or just the RA alone? Weird!?
Yeah I think you're absolutely right! I believe the same thing. It's funny I reflect on when I "think" my RA journey first started was probably a good 1-2 years before being formally diagnosed before all the inflammation & swelling started. I remember not being able to crack my right index finger. But I had no swelling, no pain, no inflammation, no redness, no hot joints. I just couldn't crack that index finger. It ended being like that for a good year & 1/2, then all of a sudden it was fine, I could crack it again, it felt normal. Then about a year or 2 after that is when all the major typical symptoms of RA showed itself. Now that I understand the disease within my own body & reflect back & say to myself, "Wow, I've had this in my body for a while". It just wasn't at a serious level back then.
In regards to my back this to me is my major sign that I need to talk to the Rheumy & get me back on a DMARD, even on the lowest strength like I was on MTX. I was only on 2.5mg once a week & it was enough. Problem is I still like to have my Friday Happy Hours & drinks by the pool, especially now we're in Summer! So we stopped the MTX because obviously that with the few drinks didn't bode well for the liver.