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This is awesome. I wish I’d known about this carnival ahead of time. Yes, everyone I know with chronic pain hates pain scales. One of my favorite posts ever was Hyperbole and a Half — her new, improved pain scale is hilarious.
Also, so true about 10! I’ve been in the ER to get morphine and rated myself an 8, or when pressed, a 9. However, I clearly remember one time that was, in my mind, a 10. But I was alone — nobody to tell! But I think I can never call anything else a 10 unless it meets or exceeds that night.
Kelly,
I believe this is just the very beginning of a more global conversation on patients living with chronic pain. Given all of the examples provided in the blog carnival, I wonder if there’s one pain scale or representation that might serve as a current gold standard? And if not, is it possible to use this pain carnival as a starting point to crowdsource a pain scale or representation supported by the majority of this community of readers? If so, then such a pain scale should be adopted for more universal use in doctor’s offices and pain clinics across the country/around the globe.
Additionally, I think it’s hight time the American Pain Society and other organizations devoted to solving “The Problem of Pain” (cf C.S. Lewis) begin inviting pain patients to their annual meetings, like other health organizations have started to do. Maybe the RheumPF can begin to lobby for this as part of its overall mission. Nevertheless, it’s up to all patients in pain to not wait for assistance in the matter but take every opportunity to relieve physical suffering in as many ways as possible. This blog carnival is a major step forward in that direction.
Thanks to all who submitted posts, and to Kelly for organizing for the common good!
-Bob
I stuff pain…I TRY to ignore pain…I don’t own up to pain…not because I’m some sort of super hero, it’s just that I get So tired of trying to explain living day in and day out with some sort of pain AT ALL TIMES. Really, how does one put that on a scale? How can others (esp. care givers) really understand unless they have a situation that’s similar? I guess pain charts are a necessity, but truly, do they even have meaning? Maybe this hour I can move OK. It may hurt like say, a mildly twisted ankle. But maybe 3 hours from now, for some mystic reason, the pain feels more like a broken bone. Maybe my hands don’t hurt so much but my ankles are killing me…If anyone has any good ideas on that, I’ll really like to hear! This pain thing is so dang difficult!
Hi dldg,
I’ve had RA for 4 yrs., been in a continual flare since diagnosis and my caregiver who happens to be my husband was the only person I felt really understood the reality and the depths of my pain. Last year I had shingles 3 times. Shingles is a very painful condition, but I didn’t even know I had it the first time until I was at my regular rheumy appt. and he was listening to my lungs and he said “Do you know you have shingles, you have a patch about the size of a softball that is solid blisters on your right shoulder blade”. I had felt some pain there, but is was nothing special compared to the rest of my chest/rib pain with each breath. I had at least a hundred blisters before it was over and during that year they recurred twice. Last month my wonderful, care-giving husband got shingles and I have listened to HOURS of his side of phone conversations as he tells everyone who will listen about the unbearable pain of shingles. It is all I can do to keep my mouth shut. He had 6-7 blisters total, I listen to him and think “Do you not see me sitting here? Do you not remember that I had this 3 times and each case was much worse that yours?” So, does anyone other than us ever really understand?
I have the same problem when I go see my rheum The pain and joint/body survey {can’t remember the name} doesn’t mean much to me. You see the dr every 3 mos but my RA flares are continual but variable. So how does one demonstrate this on the surveys so you get the “points” to really demonstrate how you are doing.
Saw my rheumatologist today, she had me fill out a new functional evaluation. It asked me how much the RA made it difficult to do different everyday tasks. She also asked about pain and swelling, but said that the functional eval helps discover the effects of RA that people might ignore if they simply accept living with pain. For example, I don’t complain much about the first 1 1/2 hours of the day being worse, when I know I have had periods where it was bad all day.
Thanks so much! Once again I found myself thinking, “Where do I go, who gets it?” It helps to read your blog and everyone else’s posts.
I just returned from a “vacation” with my senior mother. It was so hard, really, really hard. The schedule, the hotel, the hard restaurant chairs, and the walking. She is twice my age and it was hard on her but I had to act like I was fine. I wanted to be fine. I have passed more than 20 kidney stones (4 large enough for medical intervention), had gallstones and broken bones, played competitive soccer, gave birth without any pain intervention, sprained an ankle so badly that it looked like a sprained knee, and have suffered with neuropathic pain resulting from a very bad surgery, and had 3 major surgeries in 3 years. But the inside-out, chronic persistence of the RAD pain really puts me beyond the 1-10 smiley-face pain charts. I can’t describe it and I really believe that if you haven’t lived with it you can’t understand it.
I can’t say much more than “Amen,” Lyndsey. And there are numerous similar lists to yours written by patients all over this site!
I think all of y’all are right, we do need a better pain scale for chronic pain patients. Please understand, however, that Donna Wong and her colleagues developed the smiley-frowney-faces pain scale for small children in acute pain, who can’t articulate how they feel. How or why this scale has been adopted for use with adult chronic pain patients, I have no idea. But the suggestions from the participants for new concepts and constructions of pain scales are some of the most innovative I, as a nurse-scientist who has investigated various rating systems for different conditions, have ever seen. Kudos to all who participated! We need to continue working on these until we find a scale that meets the needs of the largest number of RAD people. However, it still needs to have a caveat in large red letters at the bottom to remind health care givers to TALK TO YOUR PATIENT about the selection made from the scale!
I would be glad to be part of a working group of patients to do this. Perhaps my expertise as a nurse can help?
Cheerio!
Elizabeth
Hi Elizabeth, I’ve read several articles/ editorials from the last 25 yrs that show it was a process – a need to measure – and a discussion of what would work best. There are numerous alternatives, but none have been adopted. Check out the 2 links in the post as a good start. I think we ought to continue the discussion as Bob suggested.
Kelly, Donna was a colleague of an associate of mine. I heard all about the development process of the Wong Scale as it was being developed. This was back when there were serious discussions about whether newborns and especially prematures even sensed pain! Children were supposed to not have much pain compared to adults. Donna was convinced that children did experience the same degree of pain that adults did, and developed her scale to prove it. Adults already had the 1-10 scale. Donna’s led to entirely new ways of looking at children’s pain.
As Bob says, we need to start including chronic pain patients in the development of a pain scale to address our needs. We need the same kinds of serious discussions about the kinds of pain, and degrees of pain we experience, how it affects our lives in terms of functionality, flexability, ability to relate to family and friends, ability to work, social life, etc. All aspects of our lives are affected and interfered with by our pain (as all here on this site know). So all the aspects involved in our lives need to be included.
It will take a conference group of patients, professionals and patient/professionals to work this out. Maybe we can get this on the fast track through an ACR research grant. I really, really think now is the time for this. And this Chronic Pain Scale may actually help those of us with RAD to get taken seriously!!
Just sayin’ 🙂
Love
Elizabeth
When you live in chronic pain with RAD and other similar diseases, your body builds a tolerance for pain. It is very hard to describe in numbers. On my next visit to my rheumy, I’ll simply answer “run over by a bus” best describes it. I’ll let you know what reaction I get.
When I saw my new dr for the second time yesterday, I noticed a new pain scale that had comments with the faces. Wish I had thought to ask for a copy of it. And with my crappy memory, can’t remember exactly what it said.
This dr is really a breath of fresh air. Attentive, caring, listens, understands I need a partner in this. Told me how much he appreciates that I do research, how important it is for me to be invested in my treatment. I gave him a copy of Dr Adams article off of here. We talked about the different medicines, I related what I know about the actual patient results. He was surprised I was aware of that. But…like I told him, I will take his advise and give any treatments a good try if it is one he wants me to try. Because hope is the one thing we can’t let go of.
What a wonderful report, Becky. Thanks for sharing!
Those are great points! I guess its hard to know how to compare pain levels, when you don’t know what a level 10 feels like!
Frownies. 🙁 cool. :)I wish pain were visible too… But since its not, those of without RAD ought to have have compassion, and maybe less complaining since others have it so much worse?
This is a great post. All the diagrams and pictorials are fantastic. A few weeks ago I went to a new doctor for my foot and it was the first time a doctor said to me (with out me saying it first!) that it was hard for her to tell how much pain I was in because RA sufferers have such high pain tolerance that their pain scales are way off. I have been saying to folks for years and getting weird looks. It is always good to be validated.
Definitely true on all counts! Thanks for posting. & I’m glad u have a good dr who knows!
I feel quite fortunate that my current rheumatologist has never asked me to fill out a pain scale or to look a happy/sad faces. That process seems such an inadequate way to try to summarize all that RA is and the qualities and intensities of our pain. My appointments are more of a conversation between my doctor and me. We talk about how I am doing, how my pain and stiffness levels have been, and about what challenges I am having, and most importantly, he takes my word for it. I think it would beneficial for ME to keep track of it, however. It might help me see trends that would help inform my care.
Kelly, I suspect an e-mail would do for this, but I wanted to be sure others with interests in pain would have some kind of access to it. I was reviewing a case and found this pain scale developed by a researcher at MD Anderson Center in TX (the famous cancer center). This is a marvelous pain scale, and might do well for Rheumatoid Autoimmune Disease. Here is the link. http://bit.ly/dJ1xAz They charge for commercial use, and for funded academic research. But it is free for non-funded academic research, and individual clinical practice. Y’all take a look and see what you think. There is one change I would make on it, and it may cost something to do that. Maybe ACR could take it and run with it, but rheum docs should see this and we might play with it some.
Cheerio!
Elizabeth
PS – I’m working with Enrique over at http://www.flarewatch.com to help his tool cover rheum and fibro issues (so many of us have fibro, too). It’s a little uneven as yet, but he’s working to make it better and is very open to suggestions.
Cheerie-Bye!
Elizabeth
Hi,
I really have a hard time typing because my fingers don’t go where I want them to most of the time, and it hurts. My last post wasn’t finished or proofread. What I was getting at (and never finished) was since I lost my health insurance in 2010, my RA’s and GP’s seem not to be as interested in treating my symtoms as much as they’re concerned with how much it’s worth to them.
While I was still working and made 70k/year and had BC/BS the doctors I bent over backwords trying to help me feel better and lessen my symtoms.
Now that I’m retired on disability (but not social security) and have no health insurance they seem a lot less enthusiatic about helping me. My present RA doctor doesn’t even ask about my pain. What do you do with a problem like this?
I have had good insurance since I’ve been diagnosed and have never had a dr ask me about my pain or symptoms. Since I have health insurance, I’ve assumed the reason is that they don’t understand – either they assume I’m not very sick because I don’t look very swollen in the office to them or because they don’t understand the disease enough to know how bad it can be for patients who don’t respond to treatments. So MAYBE there is another reason other than money for the way they don’t do much. Hopefully you can find someone better.
What would I do? It can be tough to get good care and even tougher without money. I’d try to get to a university setting if possible – it is usually good care & they tend to have sliding fee scales for payment. Maybe if you can get a treatment plan worked out, you can also get a dr to make sure you have refills with fewer appointments. I’ve also used local health dept services for refills for thyroid dz when I had no insurance. Sometimes docs also run routine tests that don’t give them much info for your treatment but are costly – another way you might be able to save. Some pharma companies also have treatment assistance websites to help with costs.
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I can very well understand this, my granny spent her entire life with a rheumatological disease and it was painful. I think her biggest problem was failed communication. She was never able to convey the degree of her pain.. Well thanks for the post, I am sure it will help others for better understanding.
I really don’t like those pain scales. How do you quantify the relentless demon that comes at you with a hundred faces? Something I heard some doctors do that I like better is asking “how much better do you feel?” That I can relate to … even if the answer is that I feel worse. This is how I’ve been retraining my brain to think about pain levels. =^^=