Pain Management: Online Resources for RSD/CRPS (Reflex Sympathetic Dystrophy/Chronic Regional Pain Syndrome) Patients and Others with Chronic Pain Conditions
If you are a chronic pain patient, I have come across some online resources with some great information and tools for coping. Many of your friends and family do not realize what you go through daily, so you may find it helpful to interact with others who share your condition. Here are three websites discussing pain and pain management that I have come across in my research on RSD. I have given a brief description and a few key points for each, but there is lots more information to be found. Please take a look at each site and see if you can find at least one thing from each that might be helpful to you as you go about your day.
Pain Pathways Magazine - a quarterly magazine describing itself as "the first, only, and ultimate pain magazine". Available both online and in bookstores across the United States and Canada, it was created in 2008 by Dr. Richard Rauck, M.D. Dr. Rauck is Director of the Pain Management fellowship at Wake Forest University Baptist Medical Center, as well as President of the Carolinas Pain Institute and Center for Clinical Research.
You will find articles for living with pain as well as how to care for others living with persistent pain. Under the Favorites section (toward the bottom of the home page on right hand side), read about Adrienne Witherspoon, and how she deals with the challenges of being the caregiver for her daughter who suffers from CRPS. Also under this section is a link to an excellent article, Stop Worrying, which addresses how to deal with the fear and uncertainty of living with chronic pain. You can also peruse other entries in their Wellness Blog, which is very inspirational and deals with subjects from Depression to Making a Fresh Start in the new year.
Click on the Connect tab to link to their Facebook page, follow them on Pinterest, submit a question to their Ask the Doctor section, or Share Your Story for possible publication in the magazine. They also have a Reader Feedback section where you can share your thoughts or ideas for improvement.
American Chronic Pain Association - This site was established in 1980 by a chronic pain patient named Penney Cowan. Ms. Cowan wanted to share the skills that she had learned in a pain management program with other people experiencing the same pain issues. It started out as a face to face meeting at her church, and as it grew larger and larger, the online version emerged.
Under Conditions A-Z, the Chronic Regional Pain Syndrome (RSD) section shows tools for recognizing and tracking nerve pain, and has links to several helpful videos. There's a lot of information under the Pain Management Tools page, from information on various pain medications to details of what to expect if you have to visit the Emergency Room in the middle of the night. There is also an online Pain Log to help you track your pain and symptoms on a daily basis and a follow up sheet that you can print out to use after doctor visits, to ensure that you follow up with all required treatments and recommendations.
On the right hand side of their home page, under Quick Links, they have created a Coping Calendar, which was one of my favorite things on the site. For each month it has a different theme and gives small steps on different days throughout the month that you can take towards your goals. It is an excellent tool because the material is presented in small steps, so it's not overwhelming.
Definitive Link Library for RSD/CRPS/Chronic Pain: This site is very timely and contains a great deal of information. You could spend several hours here and still not read everything. It was created by Professor T. Howard Black, a CRPS patient who has lived with the condition for 16 years and is now in remission. His primary mission in creating the site was to "compile the most current and most relevant information on CRPS/RSD and other chronic pain conditions into one central location."
He produces a monthly newsletter which contains the latest research results on pain-related conditions. All past issues are archived on the site as well. From the left-hand side of their home page, you can select the link for Newcomers, if you have just been diagnosed with CRPS and are trying to figure out where to get started and what to do first. If you need to find a pain specialist, scroll down to the state by state listing of doctors and physical therapists who have submitted their information specifically indicating a desire to treat CRPS/RSD patients. The hospital locator link is taken from the section of the Medicare website which lists all hospitals close to you and gives detailed information on what services they support, depending on your medical condition or type of surgical procedure that you require.
Also located on the left hand side of their home page is a link for Drug News, which gives the latest information on drug recalls, drug alerts, and other drug news and warnings. Pain Product News and Warnings has similar information. The Prescription Assistance section lists various programs and foundations that will help you with obtaining your medication at a cheaper cost if you don't have health insurance and need assistance in this area.
There's tons more information to be found here. You might want to bookmark this site and come back to it as various questions arise. It's a great reference tool.
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