Sunday, August 30, 2009


Hello Everyone!

Back to School time for many of you, either for yourself or your children/grandchildren means some added stress. Remember that that can also mean some additional CRPS pain, especially if you don't allow some extra down-time. Find some quiet times and some quiet corners during your day and evenings where you can be by yourself or at least where you can exert a increased level of control over the sound, noise, and vibrations and thereby reduce your pain or at least keep it from spilling over the top :)

Practicing these techniques and actively thinking about them each day can help you significantly. Try to make it part of your PCP; Pain Control Package;

1) DIET - Certain foods can make your pain better or worse, check out the chronic pain diet.

2) EXERCISE - especially aqua therapy in a warm water pool. The wrong types of PT an do a great deal of damage.

3) MEDICATION - The right combination of medication that addresses all your symptoms, just enough so you can function but not so much that you are sleepy.

4) ATTITUDE - How you approach your disease, how you decide to live with it, in spite of it, makes all the difference.

5) MEDICAL TEAM - Having a good physician, pharmacist, and for some, a psychiatrist, is very important in the management of the disease.

6) MANAGE YOUR ENVIRONMENT - This simply means BE AWARE of what in your house, workplace, friends home, etc. causes your pain to increase or decrease and adjust accordingly; A/C, fans, noise, dogs, children, TV, rest, neighbors, loved ones, stress, etc.

7) EDUCATE YOURSELF AND YOUR LOVED ONES - Use sites like American RSDHope and the RSDSA to learn about the disease. Arm yourself with the correct information and beware of sites with outdated and incorrect info.

The bottom line is that even though CRPS is ranked as the most painful form of chronic pain that exists today, if managed well, CRPS isn't a death sentence, don't live your life like it is.


For those of you who are new to the website, we don't normally send out many bulletins. People pretty much know where to look on the website for the latest additions to the website. We have MEDICAL ARTICLES sections, COPING WITH PAIN ARTICLES sections, etc. Inside those are many, many sub-sections and hundreds upon hundreds of articles with some of the latest information including the source URL's.

We put some of the new articles in the WHAT'S NEW section at the top of the website but not all so be sure to check into your favorite sections at least once a month or every couple of weeks. If you come across a chronic pain or CRPS article you believe fits on the website please email it to for consideration.

We also have very popular sections on Poetry by CRPS patients, humor sections and more. if you have submissions for those sections please send it to the same place :)

We have an on-line catalog where you can buy CRPS/RSD Awareness items with the profit going to American RSDHope's awareness programs or to sustain our organization. We have everything from T-shirts and sweatshirts with the national CRPS/RSD Awareness ribbon on them to national awareness bracelets and the national CRPS/RSD Awareness ribbon magnets for your car, and much more. Just pop by the website and you will find the link at the top of the page.


Our Mentor program is always looking for new Mentors. It is one of our busiest programs and if you are interested in helping your fellow pain patients, drop Karen and/or Lynne an email

You can read more about the Mentor program on the website :)


If anyone lives in the Rochester, NY area we have a patient who is searching for a Physical Therapist in the area who has a very good knowledge of CRPS and how to treat it. As we all know there is a world of difference between someone who knows how to treat CRPS and someone who doesn't. Far too many patients have been advance through the stages of CRPS by incorrect physical therapy; such as the use of ice, ice packs, hot/cold contrast therapy, etc. The damage to the nerves becomes so extensive the patient not only has their pain worsen but many times it spreads as well.

So if you happen to know of a CRPS-experienced physical therapist in the Rochester, NY area, please send an email with their information to and I will pass it on to them.


We get lots of emails from patients concerning which medications they should be taking, what nerve blocks they should try and when, which treatments help, don't help, questions concerning physical therapy, etc. While we enjoy hearing from everyone most of the questions we get have been answered in great detail on the website and so we usually end up referring people back to the website.

The information there has been gone over by physicians, checked, re-checked, and is the most up-to-date available. We also tried to put it in very understandable language. Sometimes these things are written so only those with Phd's can understand them, which is fine if you have one but if you don't you are SOL.

There are separate sections on the website for everything from Drug Therapies to Nerve Blocks, CRPS Descriptions to Stages, to the latest articles on everything from Medication to those standing strong in the struggle. Need a boost? Check out the Poetry section. Need a laugh? Check out the humor section.

Information regarding this disease has come a longer way and we are blessed in that we patients and loved ones can educate ourselves a hundred times over what used to be possible. Take advantage of it.

So always check the website first. Use the Search box if you aren't sure where to look or use the link at the top of the website (navigating the website). You will learn your way around pretty quickly. You can send any page on the site via email to your friends and family as well. Doing it this way saves you time and you can get more concise answers.

American RSDHope

But don't forget to drop us a line once in a while too. It gets cold and lonely up in Maine in the winter time!


We have been getting a lot of emails from people wanting to start a local support group and not sure how to go about doing it. Having worked with a local group for about a year now I can tell you first hand it isn't an easy thing even if you have a great group of eager individuals. It takes a key group of dedicated people to get it off the ground and then to keep it going.

So, we need some of the long-lasting groups out there to send us your suggestions; what have you done to keep your meetings interesting? To keep your members coming every month, or other month? How did you get your group started and what would you recommend yo someone else who is just starting? What mistakes did you make they should avoid? What special events have you held that were successful? What else would you care to share?

Send these tips to and we will place the best ones on the website in the Support Group area for all to enjoy and benefit from! Thanks everyone!

That's it for now!

Thank you,

Have a wonderful day everyone! Thanks for visiting American RSDHope and for all of your kind emails, post cards, and letters and of course, your very generous donations. We survive on your donations, they keep us going and help us to provide our information to the thousands who visit our website every month! Eleven Million hits and counting!

You can make your donations directly to the website American RSDHope

All tax deductible of course!


Keith, Karen, and Lynne!

American RSDHope



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