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?
It was me that uses the wedding ring to test my swelling & inflammation. It was just a knee-jerk upon waking test that I got so used to, that my body just does it automatically now. Another physical test my doc does, I'm not even sure if I can explain it by words, but if you look at your middle finger knuckle, imagine the 2nd knuckle if you were slipping a ring over the finger for instance, squeeze the loose skin upwards as if you're making a small mountain, if the skin does sits there & doesn't move back to it's normal position then you have some moderate swelling. If it goes back & the elasticity returns back then you probably don't have any.
Anyway, it's something like that. I do that everyday as well.
In regards to flareup since your symptoms have never truly went away so it's hard to tell when a flare is happening. But typically whats been happening to me is that very low level pain hits one joint but jumps around to other joints & its rarely bi-lateral. RA as we're told typically hits both joints so both wrists, both ankles etc. But a flare, at least for me doesn't do this & can subside within an hour but rear up again just as quickly. Hope that helps.
I have Ankylosing Spondylitis, as well. For the heck of it, get the HLA-B27 tested. 95% of all people with AS test positive for this. The GOOD news is that the treatment is a biologic.
I've already had the HLA-B27 it came back Normal B27 antigen - negative.
Njtwin: Have you considered that you might have Psoriatic Arthritis and or Psoriasis? I share your frustration about no cure. Good news is that biologics work great for them.
Anyhow, for me, the worst thing is the PAIN. I don 't like pain. I have had some EXCRUCIATING flare ups. I guess mine would be rated SEVERE.
Secondly, I don't like my crippled, twisted, deformed hands and the difficulty I have doing some things.
After that, I can deal with just about anything RA has to bring. I deal with it all by reminding myself that there are many diseases that are FAR worse!! I can walk and I can think! I can talk and tope...and even sing (very badly) and dance!
My Rheumy said that the swelling & inflammation causes the perm damage & since I had -0- signs of inflammation & or swelling we were in a good zone to halt the med's.
After all this time I do feel like I need to get back on even at the lowest dosage of either MTX or try this Arava I've had for almost 2 months now & haven't taken! LOL!
For your hands can I ask how long were they like that & is this prior to all the recent DMARDS? My Rheumy also says that it's very rare to see those type of deformities now a days with the newer meds but it all depends on how long it takes a patient to finally come in, get diagnosed & STICK to the medications.
I believe my back issue has more to do with RA that previously believed. My Rheumy thought the whole time I could have been affected by it but it was my Ortho who believed firmly it was an inflamed bulging disc that had built up fibrous tissue that was causing the issue. At this point my back is about 85% okay & there hasn't been any real progress with the PT the past 2 months & I stopped going about 3 weeks ago & I don't feel any different so I'm leaning more towards getting back on a light dosage of MTX like 2.5mg where I was before & was feeling great all over!
And this is exactly why I believe one should never go off the DMARDS, no matter how well you feel.
Sometimes you need to test the waters to gauge where you are in the progression of the disease. Some people will just stop with no doctors advise or monitoring & then the disease progresses to the point of deformity. I don't want to get there EVER so that is why I listened to my Rheumy & I personally think it was a wise decision because now I know what to look out for when it comes to flares or what is a gym inflammatory response.
I'll most likely get back on a low dosage of MTX since it worked very well. Totally my whole body feels about 85-87% but I want to get back to where I was when I was on 2.5mg of MTX which was about 98%. That's the goal.