31 Responses to “Rheumatoid Arthritis Pain in the Twilight Zone”
Rheumatoid Arthritis Warrior
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Just wanted to let you know I love reading your blogs, I’m learning a lot about RA & you’re so entertaining to boot. Thank you
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You gotta love the experts watching out for us don’t you. So I guess we are just supposed to sit in the back seat and enjoy the ride, but don’t look out the window. If we look out the window, we are called a hypochondriac or if we roll the window down and talk to anyone about the ride, we are mental.
By the way, the arthritis.org needs a proofreader. On the second page of the article, they have the same paragraph twice.
Uh, yeah, I noticed that. & the most annoying thing? It’s really hard to navigate the pages because you have to get the mouse right on top of this tiny number to click. And there’s no larger “next” button to make it easier. I feel like they don’t get it.
Rolling the windows all the way down!!! Need some fresh air.
In case you didn’t know, most browsers have a Zoom menu option or Ctrl + (plus sign) to enlarge the text to make it easier to click. In older browsers, it used to be a font size option.
Doctors are only “practicing” medicine. There are so many, many things that they have no answers for. I think that there are a LOT of things about RA that they don’t understand, and can’t explain, so they prefer to ignore those things. I periodically get chest aches/pain and I KNOW it’s RA related and that surely it must have some sort of a cause. Yet when I mention it to my MD it’s side stepped. I don’t think we are hypochondriacs. What I do think is that if any of these doctors who treat us had to deal with RA themselves they’d be just as “overfocused” and “preoccupied”… how can you not be preoccupied with something that permeates every piece and waking moment of your life? lol. Thanks for the posts and articles. For the first 6-7 years of my battle with RA I felt like I didn’t have anybody who really understood… and now I’m part of an online community (healthcentral.com rocks!) of people who know EXACTLY what I’m going through and I’m very, very grateful for that.
Really great points!
BTW: I know people who have heart issues with the RA. My grandad had RA and died with heart failure. So, it’s real. Hopefully, though the pain is from something less serious, like the little joints that join the sternum to the ribs…
Glad I finally found a dr. who is not “side stepping” my questions. Of course, I’ve learned to be diplomatic over the last few years…
I will try to remember all of this the next time I wish I could get on with life without my hands or feet. At times it seems preferable to the pain I feel.
Hi Brad,
I understand your pain, I get the same unending pain in my hands too. Seems to be worse when the weather changes, but not all the time (like you do) either.
This Northeast snow we are getting now bothered a knuckle in my hand and my achilles tendon tuesday, but not much else and no big ache when the snow is falling (currently Wed am 9:40 EST.) I’ve tried to correlate the weather achiness we get to barometric pressure changes, but it’s not very consistant, aahh the wonders of R ‘effn A!
When I get as sore as you are, I find that 4 advil work well and I will take in am and at nite before bed if needed.
I actually have a good Cardiologist who understands the pain and has prescribed me Vicodon for those days when it hurts so badly that your vision almost blurs. Do you have an understanding MD who might help? Frequent hot water hand washes help a little too.
Please write me directly if you wish, I would like that. You sound like it might help.
From one crunchy person to another!
Sincerely,
Bob
Although this doc has a point, it’s good he didn’t open up the comments on his blog:
http://www.epmonthly.com/whitecoat/2010/02/4342/
Thanks for the link. Yes, that’s odd he closed the comments. Made me want to comment more.
Kelly – Your blog helps me fight this disease and live in the acceptance of the reality of what it means for my life more than I could ever say. Thank you for the honesty in your posts. When every minute of my waking day is impacted by my pain or my fatigue I’m not a hypochondriac to want to learn how to live with it; I’m a woman who is committed to living in reality.
“Committed to living in reality.” I agree.
I’ve been reading so many of your blog entries over the past few days, it’s really helped me learn a lot more.
Thank you!
Damn it – I wish someone had told me sooner that it was all in my head, and I would get better if I just didn’t think about it! Hang on, what if I’m not the one in twenty, maybe I’m the two or the twenty… oh no there I go “catastrophizing” again… At least I learnt a new word today, never too old to learn something (even if its crap).
Looking forward to more discussion about pain thresholds.
Cheers
Jo
wow that article is really bad….
I too have been down the ‘labelling’ path by an uninformed doctor….who bascially said that I was not getting better due to psychological issues….At that stage I was in so much pain…..and so many of my joints where seizing up that it was usch a slap in the face to hear that from a supposed health professional…..
Myself being in the health profession as a nurse for the last ???15 years or so, cant believe what appalling things other health professionals can say(or not say!!!!) to their patients….
Being on the other side as a patient has been a great, but frustrating eye opener…
But back to the article…just cant believe that such a stupid, ill informed, damaging opinion can be out there for others to read….
when in intense pain…the last thing one wants to hear is the word hypochondria
It helps to know you saw it that way, too.
Hi Kelly..last week, i visited my GP (who’s very kind and never dismisses me) and he’s been having a problem with his knee. And he went on to tell me how painful it has been and how he’s had to take a ramp or the lift to visit the patients upstairs. Normally he takes the stairs. He proceeded to tell me that he could not imagine being in such pain ALL the time and in MANY joints. I think he finally somehow got it when i complained about about my newly painful hip.
Only someone with arthritis can REALLY know how it feels.
But at least the world has one more doctor who’ll be less judgemental and more sympathetic.
Thanks for raising this issue.
Have a good day.
Thanks for sharing that. I’m sorry it does seem to take pain to really develop compassion in most of us humans.
Sorry about your hip, Mumbi. Glad to hear from you.
I know the pain I am in and have often wondered how another, especially someone I know so they could tell me, would do at the same pain level. So many people act as if I am overdramatizing the pain or that I have a low threshold for pain. Am I a wuss? They make me question myself sometimes. I’ve given birth twice, I’ve had broken bones and sprains and tendonitis before RA and I would take all of those at the same time over one of my bad days anytime. I do not wish pain on anyone but I do wish compassion on everyone. No one really knows what another goes through.
I agree & this “low pain threshold” thing is starting to sound “just evil” in my mind. I have much more to say about this soon when we look at these PT – pain threshold RA studies.
I think a secondary problem is that the pain scale only goes to 10 and somedays the pain on the 1-10 scales is a 20
[...] to this article and obsession over RA in the last few days. They’re WarmSocks of ∞-itis and Kelly at Rheumatoid Arthritis Warrior. I’d like to thank both of them for piquing my interest in the article and its contents, and for [...]
You know the best and only word I have found to describe this RA is ANGUISH….Pure and simple. It took me about two years to finally accept that I have RA.The Dr told me in the very beginning that it isn’t a death sentence. But it can make you wish you were dead some times!! I get sooo tired of people (even your own family members ) thinking you are faking it. They have NO idea how bad it hurts to have to watch others do the things you use to do, to have to sit on the side lines and think”I use to be able to do that”Even when you feel better you know better then to even try to do those things because “feeling better” Is just a temporary thing. What you do when you “feel better” Could cause you to feel alot worse later!!RA is like being torchared every day for the rest of your life. SLOWLY. Kinda like a P.O.W. Your body is the captor and you are its prisoner all the time. Your Meds ad the weather and the stress, they all have a factor in how you will feel each and every day of your life.You have to plan way ahead for major events in your life. Praying every day that your captor doesn’t decide to torchar you on that day!!I just want to scream some times.HEY I CANT HELP IT…DONT YOU THINK I WANT TO BE ABLE TO WALK???? TO WORK ETC…But I know it will only get me more upset and the pay back for that is to feel even worse then I already do!! I pray to GOD alot. He is the only one ( other then people with RA) that really cares and knows and understands.When I hear of a child that has this RA, it makes me cry.Because IM an adult and I don’t understand it/I know they are in so much pain and how in the world will they understand??
Why would the arthritis Foundation publish a story like this? Its insulting and sure doesnt help with misconceptions that the world already has about R.A…I dont get it!!
Kim
Kim, I don’t think they have the same perceptions that we do about RA. I’ve read numerous things that make me think that. AF is about “arthritis” (OA) and most RA patients I meet want the Arthritis part of the name of this Rheumatoid disease changed. It’s certainly an interesting dilemma.
I have truly been blessed by three wonderful doctors who really do understand about RA and what a toll it takes on a patient’s body. My family doctor diagnosed me, and set up an appointment with an excellent rheumatologist for me. For 2 and 1/2 years the two have worked together to manage my care. My optomologist also sends reports to my rheumy every 6 months because one of the meds that I take has a slight risk of causing eye problems. I feel so bad for people whose doctors won’t listen, or are dismissive. None of my doctors have RA, so they haven’t experienced the pain. What they do have is compassion, the ability to listen, and the ability to work with other doctors for their patients to get the best care. It is really sad that all doctors don’t have that ability.
That’s great, Charlene. I hope you can keep them for a long time!
Im always having to fight with my Drs. Telling them how they need to work togethe on my RA….They still wont!! Burns me up!!
That’s frustrating isn’t it Cindy?