DO YOU HAVE A QUESTION ABOUT CRPS?
We decided to start a new section where we would post some of the questions we have received from the people who have written in to American RSDHope and/or those who have asked questions from the various websites around the internet, along with our answers to them. Hopefully you can find some answers to your own questions here. Remember, we at American RSDHope are not medical professionals. Keith answers many of these as a fellow patient. He has survived his battle with systemic CRPS since 1974. He also battles Degenerative Disc Disease, Fibromyalgia, Failed Back Syndrome, Ulnar Nerve Entrapment, Sciatica, and a few other things.
Since 1993 Keith has been involved in the RSD community and in 1995 with his parents, Bob and Lynne, American RSDHope was founded. The website followed soon after and ever since we have been reaching out to patients, their loved ones, medical professionals, and the media all across the United States and beyond. Originally, in 1993, it started with just four people meeting in IRC chat rooms. Keith still remembers meeting those people and then they expanded to a lot of dedicated people on Prodigy, AOL, and other places that no longer exist (ask your dad). We met in groups of three and four, at certain times, chatted, shared information, posted messages of support, and learned we weren't alone. What a beginning!
We hope this new section will be beneficial to all who visit. Be sure to check with your Doctor before starting or stopping any treatment or medication. Many Physicans appreciate and understand the incredible positive impact this educational information can have for most patients.
Peace,
American RSDHope
TOP TEN QUESTIONS WE GET ASKED AT AMERICAN RSDHOPE
At American RSDHope there are some questions we have been asked many times over the course of the last nearly 15 years. We have put the TOP TEN QUESTIONS and the links to their answers in this section.
1) I SEEM TO BE HAVING PROBLEMS WITH MY MEMORY. IS THAT PART OF CRPS/RSDS OR IS IT BECAUSE OF THE MEDICATIONS?
YES YES YES! You aren't going crazy or losing your mind. CRPS/RSDS causes short-term memory problems. This is due to problems related to the Limbic system of the brain. In addition to memory problems, changes in the limbic system can also cause depression, insomnia, and other issues. For more information on the main symptoms of RSD/CRPS see the following link - CRPS SYMPTOMS
2) ARE THERE CERTAIN MEDICATIONS THAT HELP? - Absolutely. There are some medications that are better than others and certainly some that need to be avoided. For more information on the typical medications that are used to treat this disease click on the link below. For information on a specific medication, type in the name in the SEARCH BOX on the main page of the website - DRUG THERAPIES
3) DOES RSD/CRPS SPREAD? CRPS/RSDS spreads to some degree in 70% or more of all cases; depending on the type of original injury, the treatments used, existing medical history, subsequent injuries, etc. For more information, articles, links, etc., see the link below. - DOES CRPS SPREAD
4) I HAVE HEARD THAT I SHOULDN'T USE ICE BUT MY PHYSICAL THERAPIST TOLD ME TO APPLY ICE PACKS TO MY FOOT (OR HAND, ARM, SHOULDER, ETC.) AND THEY USE HOT/COLD CONTRAST THERAPY WHEN I GO TO THE PAIN CLINIC. NOW I AM CONFUSED. WHO AM I SUPPOSED TO BELIEVE? - CRPS patients should not be treated with ice for their CRPS/RSDS, not with ice packs, not with hot/cold contrast therapy except in extreme cases. There are always exceptions of course but they are few and far between. Using ice can do severe damage to the nerves and the tissue that surrounds and protects them. The application of ice toe the CRPS area can not only cause the CRPS to worsen but it can also sometimes cause the disease to progress more rapidly through the stages, and in some cases even spread. For more detailed explains, see the following link - CRPS AND ICE
5) ARE DENTAL PROBLEMS PART OF THIS DISEASE? - The short answer is yes. The long answer is that many CRPS patients report problems such as; dry mouth (sometimes related to Sjogren's disease) which can lead to receding gums, cavities, and other dental issues; extreme sensitivity to cold/hot temperatures in food/drink; difficulties with dental procedures such as having cavities filled or teeth cleaned, etc. Most CRPS patients report having to have teeth pulled rather than have root canals performed due to issues with the nerves in the mouth/jaw.
6) HOW DO I FIND A DOCTOR? While we cannot recommend any individual physicians we can direct you to websites that provide information on them- Medical Links We also have a section of articles called YOUR DOCTOR AND YOU, that you might want to check out.
7) IS EXCESSIVE SWEATING PART OF THE DISEASE? - Yes. Actually some patients can have excessive sweating while others have no sweating. Check out the SYMPTOMS section.
8) WHY DON'T BLOCKS WORK ALL THE TIME?- This question is best answered by understanding the difference between SMP (Sympathetically Mediated Pain) and IMP (Independently Mediated Pain) You can do this by going to SMP AND IMP - Then you can also check out the section on nerve blocks themselves if you have questions on the different types of blocks - NERVE BLOCKS
9) PEOPLE WHO I USED TO CALL MY FRIENDS, NO LONGER SEEM TO BE THERE FOR ME, NO LONGER CALL, NO LONGER COME BY. WHY IS THAT? Many patients report this happens to them. Chronic illness is difficult enough for a patient to deal with, someone who has most of the facts and has a fairly good understanding of what is happening and what the disease or illness is all about. Loved ones and friends don't usually have that luxury and/or don't take the time to learn. Our behavior changes we don't do the things we used to. We tend to be more introspective, we shy away from loud places, many changes take place for us. We are no longer able to work and our lives are so changes that to our family and friends we are a different person on the outside while on the inside we are screaming, "It's still me!" The best ones will take the time to find out what is happening in your life and how they can help you, they will stick around. The others? Well, you can't force someone to do the right thing.
10) WILL I HAVE THIS DISEASE FOR THE REST OF MY LIFE? - This is a difficult question to answer and it is different for all people. CRPS is a disease where there are no absolutes, there are always exceptions to the rule. Many patients end up dealing with the pain and disability of CRPS for a lifetime, but there are also patients who go into remission; although they appear to be in the minority. Whether it be from being treated early with nerve blocks or some other type of treatment the key is catching and treating the disease as early as possible, typically within the first 6 to 12 months, in order to have the best chance of sending the disease into remission. More and more is being learned every year and there is more Hope as each year goes by.
What is most important to remember is that you CAN live with this disease, you can learn how to live the life you want and simply bring your pain along for the ride. It takes a combination of medication, exercise, attitude, diet, physical therapy for some, and being aware of the fact that additional injuries can cause either an increase in your pain/symptoms or a new site for the CRPS. So you must remain vigilant for new injuries but balance that with physical activity.
If we have not answered your question, please send it to RSDHope and we will do our best to answer it. Understand we get many emails each day so please allow us some time to respond. Thank you!
We decided to start a new section where we would post some of the questions we have received from the people who have written in to American RSDHope and/or those who have asked questions from the various websites around the internet, along with our answers to them. Hopefully you can find some answers to your own questions here. Remember, we at American RSDHope are not medical professionals. Keith answers many of these as a fellow patient. He has survived his battle with systemic CRPS since 1974. He also battles Degenerative Disc Disease, Fibromyalgia, Failed Back Syndrome, Ulnar Nerve Entrapment, Sciatica, and a few other things.
Since 1993 Keith has been involved in the RSD community and in 1995 with his parents, Bob and Lynne, American RSDHope was founded. The website followed soon after and ever since we have been reaching out to patients, their loved ones, medical professionals, and the media all across the United States and beyond. Originally, in 1993, it started with just four people meeting in IRC chat rooms. Keith still remembers meeting those people and then they expanded to a lot of dedicated people on Prodigy, AOL, and other places that no longer exist (ask your dad). We met in groups of three and four, at certain times, chatted, shared information, posted messages of support, and learned we weren't alone. What a beginning!
We hope this new section will be beneficial to all who visit. Be sure to check with your Doctor before starting or stopping any treatment or medication. Many Physicans appreciate and understand the incredible positive impact this educational information can have for most patients.
Peace,
American RSDHope
TOP TEN QUESTIONS WE GET ASKED AT AMERICAN RSDHOPE
At American RSDHope there are some questions we have been asked many times over the course of the last nearly 15 years. We have put the TOP TEN QUESTIONS and the links to their answers in this section.
1) I SEEM TO BE HAVING PROBLEMS WITH MY MEMORY. IS THAT PART OF CRPS/RSDS OR IS IT BECAUSE OF THE MEDICATIONS?
YES YES YES! You aren't going crazy or losing your mind. CRPS/RSDS causes short-term memory problems. This is due to problems related to the Limbic system of the brain. In addition to memory problems, changes in the limbic system can also cause depression, insomnia, and other issues. For more information on the main symptoms of RSD/CRPS see the following link - CRPS SYMPTOMS
2) ARE THERE CERTAIN MEDICATIONS THAT HELP? - Absolutely. There are some medications that are better than others and certainly some that need to be avoided. For more information on the typical medications that are used to treat this disease click on the link below. For information on a specific medication, type in the name in the SEARCH BOX on the main page of the website - DRUG THERAPIES
3) DOES RSD/CRPS SPREAD? CRPS/RSDS spreads to some degree in 70% or more of all cases; depending on the type of original injury, the treatments used, existing medical history, subsequent injuries, etc. For more information, articles, links, etc., see the link below. - DOES CRPS SPREAD
4) I HAVE HEARD THAT I SHOULDN'T USE ICE BUT MY PHYSICAL THERAPIST TOLD ME TO APPLY ICE PACKS TO MY FOOT (OR HAND, ARM, SHOULDER, ETC.) AND THEY USE HOT/COLD CONTRAST THERAPY WHEN I GO TO THE PAIN CLINIC. NOW I AM CONFUSED. WHO AM I SUPPOSED TO BELIEVE? - CRPS patients should not be treated with ice for their CRPS/RSDS, not with ice packs, not with hot/cold contrast therapy except in extreme cases. There are always exceptions of course but they are few and far between. Using ice can do severe damage to the nerves and the tissue that surrounds and protects them. The application of ice toe the CRPS area can not only cause the CRPS to worsen but it can also sometimes cause the disease to progress more rapidly through the stages, and in some cases even spread. For more detailed explains, see the following link - CRPS AND ICE
5) ARE DENTAL PROBLEMS PART OF THIS DISEASE? - The short answer is yes. The long answer is that many CRPS patients report problems such as; dry mouth (sometimes related to Sjogren's disease) which can lead to receding gums, cavities, and other dental issues; extreme sensitivity to cold/hot temperatures in food/drink; difficulties with dental procedures such as having cavities filled or teeth cleaned, etc. Most CRPS patients report having to have teeth pulled rather than have root canals performed due to issues with the nerves in the mouth/jaw.
6) HOW DO I FIND A DOCTOR? While we cannot recommend any individual physicians we can direct you to websites that provide information on them- Medical Links We also have a section of articles called YOUR DOCTOR AND YOU, that you might want to check out.
7) IS EXCESSIVE SWEATING PART OF THE DISEASE? - Yes. Actually some patients can have excessive sweating while others have no sweating. Check out the SYMPTOMS section.
8) WHY DON'T BLOCKS WORK ALL THE TIME?- This question is best answered by understanding the difference between SMP (Sympathetically Mediated Pain) and IMP (Independently Mediated Pain) You can do this by going to SMP AND IMP - Then you can also check out the section on nerve blocks themselves if you have questions on the different types of blocks - NERVE BLOCKS
9) PEOPLE WHO I USED TO CALL MY FRIENDS, NO LONGER SEEM TO BE THERE FOR ME, NO LONGER CALL, NO LONGER COME BY. WHY IS THAT? Many patients report this happens to them. Chronic illness is difficult enough for a patient to deal with, someone who has most of the facts and has a fairly good understanding of what is happening and what the disease or illness is all about. Loved ones and friends don't usually have that luxury and/or don't take the time to learn. Our behavior changes we don't do the things we used to. We tend to be more introspective, we shy away from loud places, many changes take place for us. We are no longer able to work and our lives are so changes that to our family and friends we are a different person on the outside while on the inside we are screaming, "It's still me!" The best ones will take the time to find out what is happening in your life and how they can help you, they will stick around. The others? Well, you can't force someone to do the right thing.
10) WILL I HAVE THIS DISEASE FOR THE REST OF MY LIFE? - This is a difficult question to answer and it is different for all people. CRPS is a disease where there are no absolutes, there are always exceptions to the rule. Many patients end up dealing with the pain and disability of CRPS for a lifetime, but there are also patients who go into remission; although they appear to be in the minority. Whether it be from being treated early with nerve blocks or some other type of treatment the key is catching and treating the disease as early as possible, typically within the first 6 to 12 months, in order to have the best chance of sending the disease into remission. More and more is being learned every year and there is more Hope as each year goes by.
What is most important to remember is that you CAN live with this disease, you can learn how to live the life you want and simply bring your pain along for the ride. It takes a combination of medication, exercise, attitude, diet, physical therapy for some, and being aware of the fact that additional injuries can cause either an increase in your pain/symptoms or a new site for the CRPS. So you must remain vigilant for new injuries but balance that with physical activity.
If we have not answered your question, please send it to RSDHope and we will do our best to answer it. Understand we get many emails each day so please allow us some time to respond. Thank you!
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