Rheumatoid Arthritis Pain Is Not Our Only Pain
Compared to RA, pain in the necks like these should be easy to cure
Rheumatoid Arthritis pain can be aggravating. However, something has been just as aggravating lately. It’s the pain on my head from banging it against this wall of ignorance. Almost every day I read some preposterous statement about RA or RA pain reported in the news media or a medical or science website.
Last week, there was the ABC News RA report which made it sound as if RA were all but cured. Yet, the doctor was claiming that only one third of those with RA actually need to be treated with the modern medicines. We’re always told this is the best time to have RA. Does that make sense?
Whatever… I don’t have time to stay aggravated since I have too much else to do. But, if I blink, another one appears. This week, there was this report about computer usage and RA. I think this report was sent to me through at least a half dozen venues. The report claimed that keyboard (typing) skills are unaffected by RA. The first few times I heard it, I ignored it as just more ignorance. But, eventually, it bugged me to see how it was so widely distributed, and likely, believed.
Everyone seemed to pick up the story and run a headline like this: “Don’t worry that RA will affect your work” or “RA doesn’t slow typing” or “RA patients have no problems with keyboard use.” I had no intention of refuting the stupid little study here because it seemed like a waste of time. If anyone is truly curious about whether RA actually does affect typing, please comment below & I’ll consider writing a post to refute it properly.
The point: Can anything be done about this RA PR pain?
A few hours ago, I had a lovely conversation with a new friend. She is a long-time veteran warrior against RA. As often happens between two friends with RA, the conversation turned to this: How will we change the misperception of this disease? The first thing brought up is always the name. You’ve probably heard it a thousand times: “arthritis has nothing to do with RA, so we need a new name.” I’ve heard more discussions about this unfortunate name problem than Windows has updates.
The second thing we thought about was an accurate portrayal of RA to the general public. I have mentioned before how truthful medicine advertisements have done so much to improve public awareness for other conditions such as osteoporosis, which is just one of the problems RA’ers tend to have.
A third problem we might address is doctors. I’ve written about how little the RA I meet in person resembles the RA I meet in books. Which one do you think docs are trained to trust?
Do you think we have a shot at change? What do we need to do?
Next week: Do RA’ers just have lower pain tolerance? Yep, that’s a really being discussed.
Related posts:
- We can make an impact: The Truth About Rheumatoid Arthritis Info Will Be Told!
- Are the patients doing their RA right? Is There a Typical Rheumatoid Arthritis?
- Put this in the books! What Is the First symptom of Rheumatoid Arthritis?
- Let’s get this straight: 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
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RA doesn’t affect typing? That’s just infuriating. I’d like to see the person who wrote the article try to type with swollen fingers!
I agree!! I’d like to see the person who wrote the article try to type for a three hour straight law exam (upon which their entire grade depends) with swollen fingers and painful wrists. That’s a ridiculous claim!!
Also, Kelly, just FYI: your link to Wiley InterScience didn’t work for me. But probably just as well. I’m riled up enough without reading the study at all. ~;o)
Sorry, they must have changed the link. No worry: that study is ALL OVER the internet, I got one from Science Daily to replace it. Thanks for the heads up!
Doesn’t affect typing, huh? BS, pardon my language. If my fingers hurt, typing is the last thing I want to do. Or how about sitting for long periods of time in an office chair? That can be murderous to me even if I am having a good day.
Part of me has this dream of getting a remission and becoming a crusader for changing the paradigm of health care in this country, shifting the focus off of acute problems and onto chronic problems. A world where you don’t have to argue for x-rays or blood tests, a world where pain management, nutrition, physical therapy, and counseling are considered a part of the complete picture of patient health, where more than one person’s opinion of your pain level matters, where empathy plays a part in continuing patient care. Part of me says that this is possible especially because RA is not the only misperceived illness out there. Further, many people with heart disease, etc. don’t get the full complement of healthcare that they need. Doctors and the system seem to have turned into a healthcare McDonald’s, get ‘em through the drive through in x amount of minutes from the time they place their order. Things need to change. Who’s with me?
I’m with you.
Well said Robin!
If More People like you speak up we have a fighting chance.
I personally know for a fact that RA affects typing skills. I use to type approx. 55 words per min without typos! Now I am lucky if I can type 20-25 words per min.; and that’s only on a good day after taking meds and they have kicked in.
Yes there is a way to get the word out, but how is another problem. First of all we are shelling out just about every dime we have on meds and drs visits that it’s impossible for us to hold a type of “convention”. Which is what we really need, all of us together! With a prominent Rheumatologist to hear us out.
RA should be changed to another name!!!!! People are not going to disassocaite RA with OA until the name is formally changed. People have to realize how auto-immune diseases affect the entire body. So basically some of the pain, fatigue and over all well being can not be seen. Yet discuss another auto-immune disease like Chron’s and people relate. Rheumatoid Disease is what I feel is appropiate. You say Fibromyalgia and people relate. Rheumatoid Arthritis and they do NOT relate. Arthritis is an automatic response, as in “I have that in my knee”. That is the way the brain is triggered to respond. It hears the word arthritis. Plus you have the fact that RA affects everyone differently. No two people are similiar. There are mild cases, moderate cases and severe cases. You add in the fact how the person with the disease is handling it.
I agree. It seems to me like a lot of people think of “rheumatoid arthritis” as “just a little joint pain” when it is so much more than that!
When my hands were flaring, I couldn’t hold a pen to write, but I could still type, so great, I wasn’t completely useless. Of course typing still hurt and was super slow.
I guess you can spin any situation to reflect your chosen perception. If you can still type with RA it must not affect your typing! The logic would not pass any academic scrutiny. People walk on two legs, therefore walking on two legs makes something a person. Okay, would all the bird people please stand up and walk away!
Spin indeed. “Logic”? I’m beginning to wonder whether this is a logic-free zone. Sad thing is: although no one here has requested it as I dared, I’m starting to realize that the majority out there probably do actually need it explained to them how & why RA affects typing.
Ack! RA affects keyboarding abilities. The mo-mo who would say that is the same sort of mo-mo who would say we are too young to have arthritis. RA doesn’t affect my keyboarding abilities some days but other days I can barely hold my arms up. This is the best time to have RA??? The best time to have RA is never!
Perfectly stated.
What a joke to say it doesn’t affect typing. Heck it even hurts to use the remote control and change channels on the tv sometimes. I too have a problem with sitting all day. I work as a Graphic Designer and am in front of a computer all day and it can be so painful and uncomfortable. I have to get up and walk around about every 20-30 minutes.
I have also learned to say auto-immune disease before saying rheumatoid arthritis to people. I still get a blank stare and a lot of people don’t even know what auto-immune diseases are. It is frustrating.
Well have to go now, my hands are starting to hurt and swell from typing, but oh yeah I forgot, that doesn’t effect us so it must be my imagination.
You got me going again ~;o)
http://fromthispoint-forward.blogspot.com/2010/02/pain-in-keyboard.html
I am a technical writer, so my job requires a TON of typing. The issue is just not just the pain and swelling in my fingers, it is also the pain and swelling in my wrists, not to mention my back and neck pain. Can I do my job, yes, most of the time. But, I need special keyboards, ergonomic mouse, a special chair, and so on. I was diagnosed over 10 years ago. I think if the newer meds had not come on the market, I would have been on disability. So, I am thankful that I live in a time where my RA mostly manageable… but the meds are NOT a cure. By taking them, I trade in for liver damage, cancer, a multitude of infectious diseases and so much more. In addition, I still live, forever, in pain.
My job (this site) does too. Some days I can do it. Some days I can’t. So take extra NSAIDs & pick away 2 words a minute with 1 or 2 working fingers. Every other key is “backspace”
It’s not just my fingers that cannot reach certain keys at all any more: p, o, m, z, x, q. I stop typing & look down & hunt them out slowly w/ whichever finger hurts least. But it’s also my wrists, my shoulders, and elbows which make it slow, tedious, painful…
Your last sentence is perfect.
I think for me the most frustrating part about the study is that they used people that type an average of 18 hrs per week. I can do that in 2 days some days!!! That is a little over 2hrs per day average. You can do that amount with casual internet usage. I think the study was very poorly thought out about what direction to take the study. I’m betting they didn’t use people with active flares or that have had corrective surgeries. When I’m not having a flare, I can still type great too, however when I’m having a flare, it varies as to what I can or can’t do based on which joints I’m having the problem with. Needless to say, with poor studies like this, I can understand sometimes why rheumys think the internet makes their jobs harder, especially for those people who take everything on the internet for gospel. Whether it is non-RAers wanting to know about it because of people they know having it or new drs who don’t have the experience to know that the studies or opinions are flawed, these studies do a real disservice to those of us dealing with this disease every day.
Good point about the study Becky. I see several ways I’d like to pick the study apart. Maybe I will. (fyi: I backspace about once every 3 letters. I used to type fast, furious, and fantastic…
great blog today….but I have to tell you how much I like this photo. they’re in “perfect feather”!
The ads for the biologics make it look like one has only to take their drugs; and your life will be more than normal-it’ll be FABULOUS! They add to the wall of ignorance with false advertising in my opinion. I’ve been disappointed in my responses to the 3 biologics I’ve been on-haven’t found one that works for me yet.
Note—-typing this with a wrist brace on the right (dominant) hand, due to RA pain and such stuff…
Yeah. Back in the day, I probably could type close to 100 wpm with no errors. On a TYPEWRITER, not a keyboard. An electric typewriter, granted, but still….the touch was so much “harder” than an electronically powered keyboard.
Now. Ummmmm, not so much.
Even without the pain, stiffness and rigidity from the disease, how about the issue of the dreaded “RA Brain Fog” from the meds, the fatigue and the disease itself.
I’m TIRED from dealing with the pain, stiffness and rigidity of the disease.
I’m TIRED from the side effects of the meds I’m on to control the disease.
I’m TIRED from the previously discussed sleep issues.
I’m TIRED from the fatigue of being chronically ill.
I’m TIRED from the fatigue that comes, hand-in-glove, as the happy partner of RA.
And so, I sit here, at the keyboard, with my curly, gnarly fingers poised above the keys that take so little effort to push, and….
I push the wrong key. And I hit “backspace” and hit the same, damn wrong key again. And again. And again, even though I KNOW it’s the wrong key, my brain doesn’t tell my hands to not go there.
So yeah. From 100 wpm to about 30 wpm, if you count backspace as a keystroke. Don’t freakin’ tell me it doesn’t affect “typing”.
And more importantly, why is TYPING so freaking important??? Is it because *women* are *clericals* who *type*???? Don’t get me started.
I *was* an upper-level manager. Even though I could type. Again, now, not so much. Thank once more, RA.
Yes, and why even do a study trying to prove RA is not a bother to our job skills? What is their motive? I know the result is wrong, but what is the point?
Im just started college and I have to take a keyboarding class and Im starting to get the “RA don’t affect typing skills/timing” thing. They don’t get it that even with the ortho… arthritis that is hurts to do it. Im falling behind in that class cause I can’t keep up. It makes me mad! I don’t like to spend money on somthing that isn’t working for/with me.
And YES I do belivie that the name needs to be changed. Tired of the funny looks when Im having a bad day. Im only 23. and its already old and it has been one year sense RA showed its ugly head.
Let me know what else I can do the change the name of RA and to stop this bad uprising of the wrong information! Its far to wide spread already and it needs to be stoped!!!!
Good luck with your class. Can you inform the professor of your illness and perhaps do something different like get more time for tests/trials?
I don’t know exactly how we will change it, but I believe we will. There are millions of us… and we are right. So, God will be on our side. I have hope.
I am very new to all of this. This is day 8 since my diagnosis. Reading this particular post makes one who does not quite understand all the ends and outs of rheumatoid arthritis quite disgruntled.
I am a secretary. I type 85 words a minute. When my boss asked me to take on an extra booklet project on Friday, I thought, well…I HAVE been on prednisone this last week, it should be better….okay I told him. By page three I felt I couldn’t finish this project. There were only 15 pages in the booklet, and being stubborn and wanting “my old life back” I drudged through it with painful fingers and wrist. After I was gratefully done, I realized things had to change. I would not be fired for saying no to an extra project, but there is a part of me that “wants to pull my part like others” and it is a strong feeling.
My desk is very ergonomically designed; I am very blessed in that aspect. But the more I typed, just my ring fingers and pinkies pushing the key down shot pain down my finger into my joints. And even though I am blessed to have a split key board with great wrist guard, my wrist were definitely talking to me to stop!
Saying that typing does not affect RA is like saying heroine does not affect an addict. I am very glad I have found your site. I spend much time reading old post. I must say I get upset with how people think about RA. I have already have had friends say “yeah I have that in my knee” thing, but I am glad I found you so I can stand up and tell them it is nothing like their knee. I would not have even known what to say before I read your blog or even know that people can be so ignorant and to forgive them for their ignorant insincerities.
Oh my gooodness, Jacqueline. Day 8? I am sorry for your diangosis. It must be difficult with that job. Hopefully, you will respond to disease treatment & get most of “your old life back.” The prednisone does make you feel like you can do more, but there can still be consequences to overdoing it. Take care of yourself.
well, when my hands are too.. much painful then writing in the school exams becomes a problem.. especially when there is too much to write …forefingers and wrists hurt..n sometimes hands r more as a caus of worry than preparations for exams….lol. cause u cant write even after knowing if ur wrist will hurt too badly…..
I love it when people say “now is the best time to have RA” really people?! REALLY?!?! Because I’m pretty sure the BEST time to have RA is NEVER
stupid people who came up with that phrase. I do understand we have different “newer” maybe “better” treatments but it is NEVER a good time to have RA not in the 1800’s not 1990’s and not today.
I tell myself that these misguided articles with mention of the word RA are usually only read by people who actually have it – and they know better. Maybe I’m just lucky. If I tell people that I can’t do this right now (usually a.m.) or if I tell them I can’t do it today, they usually believe me. If they don’t, then its their problem, not mine. I do get frustrated by speed which makes people think I’m totally disabled. More and more often, I find myself saying “I CAN do it. It will just take me a little longer than normal”. Of course, it took me a while to get the patience to accept my slowness, so it might take others longer.
Irene,
I have thought about who reads these too. I am beginning to think that all these articles do contribute to the actual conception of RA in our world. Having doctors & the public confused about RA is making it more difficult for us on several fronts. For one, where is the push for a “cure” for just a few aches & pains?
Your patience lesson is so true. Hard to learn & accept, but correct. I wrote on another post: Not practice makes perfect. But, patience makes perfect. (Sometimes we can do it – it just takes a long time.)