I will be adding newer and more relevant content in the coming weeks as well as changing the layout of the site a little. I will be pulling more info from not only reputable news sources, but through blogs on the same topics. Stay tuned as this blog becomes a better user experience for YOU! Please check out our new image page titled, “Spoonie Images“. This will be a personal repository of images that are related to Christine Miserandino’s Spoon Theory.
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How to Talk About Pain – Courtesy of http://www.nytimes.com/
By JOANNA BOURKEJULY 12, 2014
LONDON — IN 1926, Virginia Woolf published an essay on pain, “On Being Ill.” Isn’t it extraordinary, she observed, that pain does not rank with “love, battle and jealousy” among the most important themes in literature. She lamented the “poverty of the language of pain.” Every schoolgirl who falls in love “has Shakespeare, Donne, Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.”
Where are the novels or epic poems devoted to typhoid, pneumonia or toothaches, Woolf wondered? Instead, the person in pain is forced to “coin words himself, and, taking his pain in one hand, and a lump of pure sound in the other (as perhaps the inhabitants of Babel did in the beginning), so to crush them together that a brand new word in the end drops out.”
The difficulty in talking about painful sensations forces people to draw on metaphors, analogies and metonymies when attempting to communicate their suffering to others. Woolf — writing nearly a century after the popularization of ether, the first anesthetic — was perhaps too pessimistic about the creativity of sufferers. Take lower back pain, the single leading cause of disability worldwide. In the 1950s, one sufferer of back pain said that it felt like “a raging toothache — sometimes like something is moving or crawling down my legs.” Half a century later, one person confessed that “my back hurt so bad I felt like I had a large grapefruit down about the curve of the back.”
Woolf would not have been impressed perhaps by claims that backs hurt like a toothache or a grapefruit, but she was right to recognize that people in pain seek both to describe their suffering and to give meaning to it.
I thought that this was a wonderful way to define our reality and wanted to share!
It’s a factor in my every day life. I woke up this morning and the first thing that happened was that my arm twitched; that is, it moved about six inches in a swift jerk and then returned to its prior position. I sat up and felt the muscles in my legs cry out in pain. I pulled myself up and out of bed and took very hesitant, slow steps to the bathroom, and my sense of balance was off. I woke up feeling tired and unfocused. My joints hurt and if someone called me up today and invited me to go for a walk or something I’d turn them down.
It’s also something that a lot of people know about me. I blog about my illness, I talk about it, I work it into my classes when it’s appropriate. For some people, it’s the one thing…
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10 New Pain Management Studies
Written by Taryn Tawoda | May 21, 2012
Here are 10 recent findings on to pain management and treatment.
1. Athletes’ higher pain tolerance may pave the way for pain management research. Researchers have found that athletes can tolerate a higher level of pain than normally active people. The findings, published in the June issue of Pain, indicated that athletes involved in game sports had a higher tolerance for pain than other athletes. Results varied widely, suggesting that endurance athletes have more similar physical and psychological profiles, while athletes involved in game sports are more diverse.
2. Lower back treatment is most effective during the first six weeks. Patients who receive treatment for chronic and lower back pain show significant improvement in the first six weeks, but may still have some pain and disability after one year. Researchers analyzed data from 33 studies that included more than 11,000 patients to determine how treatment affects lower back pain. One year after beginning treatment, the typical improvement in pain intensity was about 90 percent for patients who had acute lower back pain and 50 percent for patients who had chronic lower back pain.
3. Opioid use and hypogonadism appear to be linked. The first study to show a safety difference between short and long-acting opioids also revealed a link between testosterone levels among men using the opioids daily to treat chronic pain. Nearly three-fourths of patients taking long-acting opioids on a daily basis were found to be hypogonadal, compared with a third of men on short-acting agents, the study found. Researchers also found a “small” association between testosterone level and body mass index.
4. Lyrica is no more effective than placebo painkillers. In two studies — an HIV neuropathy study and a peripheral diabetic neuropathy study — patients were given Lyrica for six weeks and then switched to either a placebo or continued using Lyrica for 13 weeks. Pfizer said that patients who took Lyrica continued to show improvements, but they were not significantly different from those seen in the placebo group.
5. Pregabalin bridges the gap in treating spinal cord injury pain. Results from a randomized clinical study show that the anticonvulsant drug pregabalin provides rapid relief from pain and pain-related sleep disturbance in patients with spinal cord injuries. The study lays groundwork to fill a treatment gap for spinal cord injury patients.
6. Patients with celiac disease are more likely to suffer from migraines. Researchers analyzed 502 people over the course of a year. Chronic headaches were reported by 56 percent of gluten-sensitive participants, 30 percent of those with celiac disease and 23 percent of those with inflammatory bowel disease, while only 14 percent of the control group reported headaches.
7. Pre-op educational videos may reduce patient pain. Lung cancer patients who watched a 30-minute preparation video reported less physical pain after the operation. The video covered pain management issues and discussed warning signs for possible problems following discharge and where patients should go for help.
8. Steroid injections are no more effective than a placebo in treating back pain. Researchers tested 84 adults who experience back pain in the last six months. Participants received one of three injections given two weeks apart: steroids, etanercept or a placebo saline solution. All three groups reported a decrease in leg and back pain. Steroids may provide a short-term analgesic effect, researchers said, but the patients’ overall improvement was mainly due to normal healing, according to the study authors.
9. Most patients take incorrect dosages of prescription drugs. Researchers surveyed nearly 76,000 laboratory tests and found that 63 percent of patient actions around prescription drug dosages were inconsistent with clinician orders, either missing doses or combining medications with other drugs without their physician’s knowledge. Among the highest rates of inconsistency with clinician orders were oxycodone (44 percent), central nervous system depressants including alprazolam (50 percent) and the stimulant amphetamine (48 percent).
10. PAP injections are more effective than acupuncture for pain relief. Researchers injected prostatic acid phosphatas into the soft tissue area behind patients’ knees and noted that pain relief lasted 100 times longer than relief from a traditional acupuncture treatment. A single injection was also effective at reducing symptoms associated with inflammatory pain and neuropathic pain.
Source: Becker’s Spine Review
If you have Lupus, you know how daunting the diagnosis, pill regiment, family education, and the all-around stress can be. Well, now you don’t have to go it alone! Christine Miserandino, the founder of ButYouDontLookSick.com is now heading up a lecture series on WebMD that covers everything from helping the newly diagnosed to deciphering the secret language of lupus (c.f. The Spoon Theory). Here is a quick bio of Christine from the WebMD Lupus Community:
Christine Miserandino is an award-winning writer, blogger, speaker and lupus patient advocate from New York. Her writing about lupus and her “Spoon Theory” of communicating about lupus has been featured in numerous newspapers, magazines, medical newsletters and television media, as well as on her website ButYouDontLookSick.com
From the age of fourteen, Christine Miserandino was diagnosed with a myriad of illnesses from Chronic Fatigue Syndrome to Epstein Barr, and finally, many years later, was given a diagnosis of Lupus. Though battling a shopping list of symptoms, Christine has consistently been told, by both well-wishers an doctors alike, “But you don’t look sick.” as if that was some kind of compensation for being chronically ill. Many times, being pretty or not sickly looking, made it harder to validate an illness you cannot see.
Christine is currently a member of the board of directors for the Lupus Alliance of America (National) as well as the Lupus Alliance of America Long Island/Queens Affiliate. Her passion is helping those with Lupus through her writing, speaking, volunteering, and work as a patient advocate. When not advocating for lupus awareness; Christine loves spending time with her daughter Olivia. She enjoys scrapbooking, music, and theatre.
In my last posting I talked about the reasons for keeping a pain journal and the many ways I have done so in the past. As promised, I’m doing a follow-up to that article focusing on keeping a pain journal on your BlackBerry smartphone. When I was keeping this type of pain journal I found it very convenient to keep track of my daily activities since my phone was with me 24/7. Also, since most of my pain originates in my hands and wrists, I was eager to find a system in which the least amount of writing or typing was necessary. In this, I found that my BlackBerry was perfect. As you can see in the image below (actual screen captures of my phone), I was never more than two clicks away from my pain journal. From my home screen, I was able to access my memo pad by just scrolling. Then once I clicked in a memo pad I was presented with my daily routine.
What makes the system so appealing to me is that I did not actually type everything you see in the picture. In fact, the BlackBerry smartphone allows me to set up shortcuts in which I can type a few letters and upon pressing space or enter will inject a longer phrase or entire sentence. For example, as you can see in the image below, all that I do is type “D1” and press enter to inject “1 Glass of Water @ 12:22:23”. What you might also notice about this image is that the time is automatically entered as well. This is convenient in that it is one thing less for you to do. By setting up your phone correctly, you can keep track of anything you do in your day to the second. By setting up a long list of codes I can keep track of my entire day with a simple letter and number combination. You can see from the image that my three most common drinks during the day are expressed as D1, D2, and D3.
Setting up these phrase substitutions is quite easy. Every BlackBerry device has a menu option for “Word Substitution”. On my particular device (BlackBerry Bold 9700) I enter my options menu, click typing and input, and then enter the word substitution pane. From there I can enter any word, misspelling or phrase to be substituted for any word. The word substitution option on the phone is mostly used for spelling correction. So instead of sending “catn” by accident, my phone will correct it to “can’t”. You can put anything you want into the substitutions since there is no word limit. This is why it is very easy to use as a journal.
As you can see, this type of pain journal can work very well for some. It is easy and quick to access and lessens the pain of writing or typing. I personally even had an option to rate pain based on a scale. For example, “rw8” would type out “Right Wrist Pain is 8/10 @ TIME”. This way my doctor was able to know which wrist was in pain, how much pain it was in, and the time it was at that intensity. This was most useful during our appointments. If you would like to know more about word substitutions on a Blackberry, All About my Blackberry did a great post here.