CRPS / RSD Top FAQ's
COMPLEX REGIONAL PAIN SYNDROME FAQ'S
CRPS PAIN
Here are the TOP 15 most frequently asked questions and their answers regarding CRPS that we have received here at American RSDHope.
Questions on;
Memory, Medications, The spread of CRPS, Use of ice, Dental issues, The right type of Doctor to treat CRPS, Sweating & CRPS, Nerve Blocks, Friends & CRPS, How long will my CRPS last, CRPS & surgery/ER Visits, CRPS & Blood tests, Does CRPS go into remission, Does CRPS "burn itself out", Is there a difference between CRPS & RSDS?, Can I live with CRPS?
There is also now an FAQ Part Two HERE.
The FAQ Part Two questions are a little more complicated and/or required an entire article to answer. Click on that link to see all of them. Feel free to send the link for this page to your loved ones to help them understand your disease a little better. If you have some questions you would like to suggest for these sections send them to Keith at American RSDHope.
We at American RSDHope are not medical professionals. Do not start/stop any treatment/medication without consulting with your Doctor.
Questions on;
Memory, Medications, The spread of CRPS, Use of ice, Dental issues, The right type of Doctor to treat CRPS, Sweating & CRPS, Nerve Blocks, Friends & CRPS, How long will my CRPS last, CRPS & surgery/ER Visits, CRPS & Blood tests, Does CRPS go into remission, Does CRPS "burn itself out", Is there a difference between CRPS & RSDS?, Can I live with CRPS?
There is also now an FAQ Part Two HERE.
The FAQ Part Two questions are a little more complicated and/or required an entire article to answer. Click on that link to see all of them. Feel free to send the link for this page to your loved ones to help them understand your disease a little better. If you have some questions you would like to suggest for these sections send them to Keith at American RSDHope.
We at American RSDHope are not medical professionals. Do not start/stop any treatment/medication without consulting with your Doctor.
CRPS Awareness
COMPLEX REGIONAL PAIN SYNDROME FAQ'S
Like all the other pages on our website we ask that you respect our copyright and do not simply copy the information here to your own website but rather LINK to this page. If you would like to print out this information to share with your physician or physical therapist however, feel free to do so. Educating the medical community and other people in your life is part of our mission and goal.
Medical information, especially with disease like ours, constantly requires updating so to be sure you have the most up-to-date information possible, share the links and not just the information you come across ;-)
1) I SEEM TO BE HAVING PROBLEMS WITH MY MEMORY. IS THAT PART OF CRPS/RSD OR IS IT BECAUSE OF THE MEDICATIONS?
YES and 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 CAN HELP CRPS?
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, look for the section of our website under Treatments called- DRUG THERAPIES
There is also an article on THE SCHEDULE OR CLASSES OF DRUGS in the Drug Therapies section.
3) CAN CRPS SPREAD? If so, how likely is mine to spread and where?
YES! ABSOLUTELY! What??? Really? YES!
CRPS 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. The fact that CRPS spreads has been recognized since 1976 (American Journal of Medicine)-1.
It seems to follow very specific paths in most patients; hand to arm; foot to leg. But it can also go from one side to the other, left foot to right foot, right hand to left hand, etc. It can also spread up the arm from the hand it what is commonly known as shoulder/hand syndrome.
In many cases where a spinal injury is involved it appears more likely to spread full body but it can happen in other cases as well. CRPS can occur in almost any part of the body and it can spread to almost any part of the body as well, from the many cases that are constantly being presented. If you have a nerve there, it can spread there.
Just a note - For us at American RSDHope, we don't believe that there is a part or area of the body that we have not been informed of a case of CRPS being affected by or having spread to. In other words, in our two decades of talking to hundreds of thousands of CRPS patients from, not only the USA but many countries around the world, we have encountered CRPS having been in or spread to pretty much every part of a persons body.
We had someone ask us the other day is there anywhere else on the internet that discusses the spread of CRPS? Soon, here you go!
http://forwardthinkingpt.com/2011/06/03/why-does-complex-regional-pain-syndrome-crps-spread/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3162139/
http://www.webmd.com/pain-management/guide/complex-regional-pain-syndrome
4) I HAVE HEARD THAT CRPS PATIENTS SHOULD NOT 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?
AND IS THERE A DIFFERENCE FOR CRPS PATIENTS BETWEEN ICE PACKS AND HOT/COLD CONTRAST THERAPY, AND WARM AND COOL WATER THERAPY OR DOES IT ALL HAVE A SIMILAR EFFECT?
CRPS patients should not be treated with ice to treat their CRPS areas, 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 to 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. The use of Hot/Cold Contrast Therapy (or warm/cool water therapy) can also be damaging for the same reasons. For more detailed explains, see the following link - CRPS AND ICE
Why do some Physical Therapy Centers still insist that it is ok to use ice packs and or this type of therapy then? We do not know the answer to that question any more than we know the answer to the question of why some states WC systems still insist on not treating the patients with the more successful early interventions of nerve blocks, aqua therapy, and other non-surgical interventions but instead prefer to jump right in with surgical interventions. The information is, and has been, available for years on the National CRPS websites, American RSDHope and the RSDSA on how to correctly diagnose and treat this disease folks.
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.Read the following articles;
CRPS & DENTISTRY
6) HOW DO I FIND A DOCTOR TO TREAT MY CRPS?
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. As to what KIND of Physician normally treats CRPS? Generally if you can get into a Pain Clinic with a history of treating CRPS patients that is great. They will usually have a variety of Physicians there and use a Team Approach to treat the patient; combining an Anesthesiologist, a Pain Psychologist, and a Neurologist, with maybe a GP or a Rheumatologist. Different clinics have different combinations but they key is that different Drs will use their different skill-sets to assess you and then come together and discuss their findings and develop a treatment plan.
If you see a single physician chances are that you will look for an Anesthesiologist or a Pain Management specialist. They are trained to handle pain and more likely to have done extra work/training in the field of pain mgt. They also will be less likely to look for surgical options right away and more prone to look long term than quick fix. You are less likely to see an Ortho, Podiatrist, Rheumatologist, etc. Some of them do treat the disease but not very many. There are some GP's who treat it as well, but again not very many.
7) IS EXCESSIVE SWEATING PART OF THE DISEASE?
Yes. Some patients can actually have excessive sweating while others have no sweating and this can alternate back and forth; change from year to year, change depending on the seasons of the year, change depending on the patients' pain levels, etc.. Check out the SYMPTOMS section.
The same goes for nail and hair growth. There are times when a CRPS patient may experience no nail growth or brittle nail/hair growth, and other times when their hair/nails may just seem to grow like crazy. These periods can last for weeks, months, or even years, vary from patient to patient, and stage to stage of the disease. Yet one more reason why Doctors have difficulty diagnosing this disease.
8) WHY DON'T NERVE BLOCKS WORK ALL THE TIME FOR CRPS?
When is a Nerve Block most likely to work?
Is there a time when I should no longer consider a Nerve Block?
These are questions that many patients ask us and probably a lot of others wonder about but never ask. The questions are best answered by first learning about the DIFFERENT TYPES OF NERVE BLOCKS
Next, lets take a look at THE DIFFERENCE BETWEEN SMP (Sympathetically Mediated Pain) AND SIP (Sympathetically Independent Pain). You can do this by reading the following article, SMP AND SIP - What Is The Difference?
We also put together an article "Can There Be Problems With a Block?"
Lastly, you can visit the section on Nerve Blocks if you have questions on the different types, 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? DOES IT HAPPEN TO ALL CHRONIC PAIN PATIENTS?
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.
Yes, we have an article that might help you here as well and we are working on Part two right now. The article is called "To The Friends and Families of CRPS/RSD Patients" but it could probably be sent to the loved one of any chronic pain patient.
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.
11) WHAT ABOUT CRPS AND SURGERY? Are there precautions I can take? Should I even try it? What should I do? How about Needles? Having my blood drawn? Are there precautions I should take?
We have an article that addresses CRPS, surgery, blood draws, and more - You can read it by clicking here!
12) DOES CRPS GO INTO REMISSION?
REMISSION AND CRPS
Will your CRPS go into remission? Unfortunately, not very likely but it depends on the age of the patient and the type of injury sustained. The incidence of remission is extremely low. It is highest for teens, especially if they are diagnosed within 1 to 12 months and treated aggressively. For adults, the need for quick diagnosis is even more urgent; within the first 3 to 6 months is imperative and that must be followed with aggresive therapy. The type of therapy depends on the type of CRPS you are diagnosed with. Newer treatments, especially the ketamine infusion in-hospital 5 day Awake technique, are proving successful in more than half of the patients treated and many are experiencing complete pain relief for up to 1, 2 years or more. As the study of CRPS continues and more is learned the hope is that more patients will be able to experience longer periods of pain relief. But again, the relief is temporary and not a cure.
There are cases of spontaneous remission, where the CRPS is suddenly gone. It can be gone permanently or temporarily. Why? Some will say it is the power of prayer. Others point to a number of factors; a previous treatment that took time to coalesce; the disease "burned itself out" (I seriously doubt this one, see below); sometimes it can even develop into Fibromyalgia (this seems to happen in a number of patients). For whatever reason, if it goes away, good riddance!
IS IT CONSIDERED REMISSION IF I AM NOT IN PAIN BUT STILL TAKE PAIN MEDICATION?
This is a question we get asked quite often. Patients get their pain under control with the help of some of the wonderful physicans and therapists out there through the use of medications and physical therapy; usually a combination of aqua therapy and cardio, such as treadmill or stationary bike. The less pain they are in the more they can do physically, the better mood they are in emotionally, the better they sleep, sometimes leading to the need for even less pain medication; it is all a great healing cycle. For some, their pain goes away completely but they still need the medication to keep it away. Does this mean true remission then? The answer could be debated back and forth forever but the bottom line is, does it matter? If you have no pain and have improved your quality of life enjoy it! Take extra precautions, absolutely. Someone who has had CRPS once is more likely to have a recurrence than someone who has never had it, but don't let that thought rule your life.
13) DOES CRPS BURN ITSELF OUT?
NO. Absolutely not. We have had the privilege of working with and talking to many of the top pain management physicians all across the USA over the last twenty odd years and I don't remember one of them every discussing how this disease "burns itself out, and we specifically asked that question of many of them. It is an answer given though by some Drs to patients when asked what the prognosis for this disease is and it can calm very scared patients down but if you aren't giving your patients the correct information, they are in for a rude awakening a few years down the road.
Keith shares, "The first time I heard this was when I was finally diagnosed with what was then called RSDS. The Dr diagnosed me out of a book. She said I "had this disease called Reflex Sympathetic Dystrophy Syndrome", that "it would burn itself out in two years at the most", and that until then" I would most likely get worse not better". At the time I was unable to work, barely able to walk and ended up in a wheelchair within a few months. Within another few months I was seen by a much more qualified physician, who had seen quite RSD cases, although none that had gone systemic as mine had, and he advised me to "buy not rent" a wheelchair. It is now 19+ years later and I am still waiting for it to burn itself out." Keith has had CRPS since he was 14 years old, it went systemic following an automobile accident in 1985. In 2016 he had his 42 CRPS anniversary.
We have had quite a number of patients tell us similar stories. Unfortunately it does no such thing and there is no such diagnostic code for this, or have I ever talked to a Doctor who said , "Oh yeah this happens all the time."
14) IS THERE A DIFFERENCE BETWEEN CRPS AND RSDS? IF SO, WHAT IS IT?
There have been some confusion surrounding the two different name for our disease; CRPS and RSDS, so we thought we should try to clear it up.
- Is there a difference between CRPS and RSDS? What are the differences between CRPS and RSDS?
One Doctor tells me "You have RSD" while another says, "No, it is CRPS.", and a third tells me "They are the same thing." Now I am totally confused. Which is the right term? Why is a there a CRPS Type I and CRPS Type II, and what is the difference between those two?
CRPS TYPE I, until recently, is what has always been known as Reflex Sympathetic Dystrophy Syndrome, RSDS or classic RSDS. It involves soft tissue injuries such as burns, sprains, strains, tears, and most of the medical issues that end in “itis” (bursitis, arthritis, and tendonitis to name a few). It can involve minor nerve injury
CRPS TYPE II involves damage to a major nerve. It used to be called Causalgia. CRPS Type II also involves a clearly defined nerve injury.
You can read a much more detailed explanation regarding CRPS Types I and II by CLICKING HERE.
15) IS THERE A WAY TO LIVE WITH CRPS IF I CAN'T PUT IT INTO REMISSION?
Ok, so maybe you have had the disease for 12 months now, feel you are past the window where Nerve Blocks usually work and are wondering "What do I do now? Surgery? No, they told me to stay away from that. Drugs? Which ones? It is pretty confusing and I don't want to feel drugged all the time. Ketamine? Too expensive and doesn't seem like it lasts. SCStimulator? Nah, that is surgery right? Besides, that doesn't seem to be the answer for most people either. So what is the answer?"
What if we try a combination of non-invasive ideas we can live with long-term? Can we put together some sort of treatment plan with our Doctors, our Pain Management Team, that will see us two, Five, Ten years down the road? Is that possible? A combination of medications that does help to minimize my pain or knock it down enough to let me live my life, but not so much that I feel dopey? And an exercise program that is smart and sensible that gets me moving again, on a regular basis, keeps me motivated, but helps me to not over-do so I end up in more pain?
And what about my mental attitude? Does that matter? Will that help? Who I surround myself with? What I listen to, read, watch on TV, the movies, etc. We can't choose the family we were born into but we can choose the family we surround ourselves with. We can and must also choose what we put into our heads, our minds. Find a way to filter it. There is an old business adage, GIGO. It stands for Garbage In, Garbage Out. We need to apply that principle to ourselves.
Like all the other pages on our website we ask that you respect our copyright and do not simply copy the information here to your own website but rather LINK to this page. If you would like to print out this information to share with your physician or physical therapist however, feel free to do so. Educating the medical community and other people in your life is part of our mission and goal.
Medical information, especially with disease like ours, constantly requires updating so to be sure you have the most up-to-date information possible, share the links and not just the information you come across ;-)
1) I SEEM TO BE HAVING PROBLEMS WITH MY MEMORY. IS THAT PART OF CRPS/RSD OR IS IT BECAUSE OF THE MEDICATIONS?
YES and 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 CAN HELP CRPS?
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, look for the section of our website under Treatments called- DRUG THERAPIES
There is also an article on THE SCHEDULE OR CLASSES OF DRUGS in the Drug Therapies section.
3) CAN CRPS SPREAD? If so, how likely is mine to spread and where?
YES! ABSOLUTELY! What??? Really? YES!
CRPS 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. The fact that CRPS spreads has been recognized since 1976 (American Journal of Medicine)-1.
It seems to follow very specific paths in most patients; hand to arm; foot to leg. But it can also go from one side to the other, left foot to right foot, right hand to left hand, etc. It can also spread up the arm from the hand it what is commonly known as shoulder/hand syndrome.
In many cases where a spinal injury is involved it appears more likely to spread full body but it can happen in other cases as well. CRPS can occur in almost any part of the body and it can spread to almost any part of the body as well, from the many cases that are constantly being presented. If you have a nerve there, it can spread there.
Just a note - For us at American RSDHope, we don't believe that there is a part or area of the body that we have not been informed of a case of CRPS being affected by or having spread to. In other words, in our two decades of talking to hundreds of thousands of CRPS patients from, not only the USA but many countries around the world, we have encountered CRPS having been in or spread to pretty much every part of a persons body.
We had someone ask us the other day is there anywhere else on the internet that discusses the spread of CRPS? Soon, here you go!
http://forwardthinkingpt.com/2011/06/03/why-does-complex-regional-pain-syndrome-crps-spread/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3162139/
http://www.webmd.com/pain-management/guide/complex-regional-pain-syndrome
4) I HAVE HEARD THAT CRPS PATIENTS SHOULD NOT 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?
AND IS THERE A DIFFERENCE FOR CRPS PATIENTS BETWEEN ICE PACKS AND HOT/COLD CONTRAST THERAPY, AND WARM AND COOL WATER THERAPY OR DOES IT ALL HAVE A SIMILAR EFFECT?
CRPS patients should not be treated with ice to treat their CRPS areas, 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 to 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. The use of Hot/Cold Contrast Therapy (or warm/cool water therapy) can also be damaging for the same reasons. For more detailed explains, see the following link - CRPS AND ICE
Why do some Physical Therapy Centers still insist that it is ok to use ice packs and or this type of therapy then? We do not know the answer to that question any more than we know the answer to the question of why some states WC systems still insist on not treating the patients with the more successful early interventions of nerve blocks, aqua therapy, and other non-surgical interventions but instead prefer to jump right in with surgical interventions. The information is, and has been, available for years on the National CRPS websites, American RSDHope and the RSDSA on how to correctly diagnose and treat this disease folks.
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.Read the following articles;
CRPS & DENTISTRY
6) HOW DO I FIND A DOCTOR TO TREAT MY CRPS?
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. As to what KIND of Physician normally treats CRPS? Generally if you can get into a Pain Clinic with a history of treating CRPS patients that is great. They will usually have a variety of Physicians there and use a Team Approach to treat the patient; combining an Anesthesiologist, a Pain Psychologist, and a Neurologist, with maybe a GP or a Rheumatologist. Different clinics have different combinations but they key is that different Drs will use their different skill-sets to assess you and then come together and discuss their findings and develop a treatment plan.
If you see a single physician chances are that you will look for an Anesthesiologist or a Pain Management specialist. They are trained to handle pain and more likely to have done extra work/training in the field of pain mgt. They also will be less likely to look for surgical options right away and more prone to look long term than quick fix. You are less likely to see an Ortho, Podiatrist, Rheumatologist, etc. Some of them do treat the disease but not very many. There are some GP's who treat it as well, but again not very many.
7) IS EXCESSIVE SWEATING PART OF THE DISEASE?
Yes. Some patients can actually have excessive sweating while others have no sweating and this can alternate back and forth; change from year to year, change depending on the seasons of the year, change depending on the patients' pain levels, etc.. Check out the SYMPTOMS section.
The same goes for nail and hair growth. There are times when a CRPS patient may experience no nail growth or brittle nail/hair growth, and other times when their hair/nails may just seem to grow like crazy. These periods can last for weeks, months, or even years, vary from patient to patient, and stage to stage of the disease. Yet one more reason why Doctors have difficulty diagnosing this disease.
8) WHY DON'T NERVE BLOCKS WORK ALL THE TIME FOR CRPS?
When is a Nerve Block most likely to work?
Is there a time when I should no longer consider a Nerve Block?
These are questions that many patients ask us and probably a lot of others wonder about but never ask. The questions are best answered by first learning about the DIFFERENT TYPES OF NERVE BLOCKS
Next, lets take a look at THE DIFFERENCE BETWEEN SMP (Sympathetically Mediated Pain) AND SIP (Sympathetically Independent Pain). You can do this by reading the following article, SMP AND SIP - What Is The Difference?
We also put together an article "Can There Be Problems With a Block?"
Lastly, you can visit the section on Nerve Blocks if you have questions on the different types, 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? DOES IT HAPPEN TO ALL CHRONIC PAIN PATIENTS?
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.
Yes, we have an article that might help you here as well and we are working on Part two right now. The article is called "To The Friends and Families of CRPS/RSD Patients" but it could probably be sent to the loved one of any chronic pain patient.
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.
11) WHAT ABOUT CRPS AND SURGERY? Are there precautions I can take? Should I even try it? What should I do? How about Needles? Having my blood drawn? Are there precautions I should take?
We have an article that addresses CRPS, surgery, blood draws, and more - You can read it by clicking here!
12) DOES CRPS GO INTO REMISSION?
REMISSION AND CRPS
Will your CRPS go into remission? Unfortunately, not very likely but it depends on the age of the patient and the type of injury sustained. The incidence of remission is extremely low. It is highest for teens, especially if they are diagnosed within 1 to 12 months and treated aggressively. For adults, the need for quick diagnosis is even more urgent; within the first 3 to 6 months is imperative and that must be followed with aggresive therapy. The type of therapy depends on the type of CRPS you are diagnosed with. Newer treatments, especially the ketamine infusion in-hospital 5 day Awake technique, are proving successful in more than half of the patients treated and many are experiencing complete pain relief for up to 1, 2 years or more. As the study of CRPS continues and more is learned the hope is that more patients will be able to experience longer periods of pain relief. But again, the relief is temporary and not a cure.
There are cases of spontaneous remission, where the CRPS is suddenly gone. It can be gone permanently or temporarily. Why? Some will say it is the power of prayer. Others point to a number of factors; a previous treatment that took time to coalesce; the disease "burned itself out" (I seriously doubt this one, see below); sometimes it can even develop into Fibromyalgia (this seems to happen in a number of patients). For whatever reason, if it goes away, good riddance!
IS IT CONSIDERED REMISSION IF I AM NOT IN PAIN BUT STILL TAKE PAIN MEDICATION?
This is a question we get asked quite often. Patients get their pain under control with the help of some of the wonderful physicans and therapists out there through the use of medications and physical therapy; usually a combination of aqua therapy and cardio, such as treadmill or stationary bike. The less pain they are in the more they can do physically, the better mood they are in emotionally, the better they sleep, sometimes leading to the need for even less pain medication; it is all a great healing cycle. For some, their pain goes away completely but they still need the medication to keep it away. Does this mean true remission then? The answer could be debated back and forth forever but the bottom line is, does it matter? If you have no pain and have improved your quality of life enjoy it! Take extra precautions, absolutely. Someone who has had CRPS once is more likely to have a recurrence than someone who has never had it, but don't let that thought rule your life.
13) DOES CRPS BURN ITSELF OUT?
NO. Absolutely not. We have had the privilege of working with and talking to many of the top pain management physicians all across the USA over the last twenty odd years and I don't remember one of them every discussing how this disease "burns itself out, and we specifically asked that question of many of them. It is an answer given though by some Drs to patients when asked what the prognosis for this disease is and it can calm very scared patients down but if you aren't giving your patients the correct information, they are in for a rude awakening a few years down the road.
Keith shares, "The first time I heard this was when I was finally diagnosed with what was then called RSDS. The Dr diagnosed me out of a book. She said I "had this disease called Reflex Sympathetic Dystrophy Syndrome", that "it would burn itself out in two years at the most", and that until then" I would most likely get worse not better". At the time I was unable to work, barely able to walk and ended up in a wheelchair within a few months. Within another few months I was seen by a much more qualified physician, who had seen quite RSD cases, although none that had gone systemic as mine had, and he advised me to "buy not rent" a wheelchair. It is now 19+ years later and I am still waiting for it to burn itself out." Keith has had CRPS since he was 14 years old, it went systemic following an automobile accident in 1985. In 2016 he had his 42 CRPS anniversary.
We have had quite a number of patients tell us similar stories. Unfortunately it does no such thing and there is no such diagnostic code for this, or have I ever talked to a Doctor who said , "Oh yeah this happens all the time."
14) IS THERE A DIFFERENCE BETWEEN CRPS AND RSDS? IF SO, WHAT IS IT?
There have been some confusion surrounding the two different name for our disease; CRPS and RSDS, so we thought we should try to clear it up.
- Is there a difference between CRPS and RSDS? What are the differences between CRPS and RSDS?
One Doctor tells me "You have RSD" while another says, "No, it is CRPS.", and a third tells me "They are the same thing." Now I am totally confused. Which is the right term? Why is a there a CRPS Type I and CRPS Type II, and what is the difference between those two?
CRPS TYPE I, until recently, is what has always been known as Reflex Sympathetic Dystrophy Syndrome, RSDS or classic RSDS. It involves soft tissue injuries such as burns, sprains, strains, tears, and most of the medical issues that end in “itis” (bursitis, arthritis, and tendonitis to name a few). It can involve minor nerve injury
CRPS TYPE II involves damage to a major nerve. It used to be called Causalgia. CRPS Type II also involves a clearly defined nerve injury.
You can read a much more detailed explanation regarding CRPS Types I and II by CLICKING HERE.
15) IS THERE A WAY TO LIVE WITH CRPS IF I CAN'T PUT IT INTO REMISSION?
Ok, so maybe you have had the disease for 12 months now, feel you are past the window where Nerve Blocks usually work and are wondering "What do I do now? Surgery? No, they told me to stay away from that. Drugs? Which ones? It is pretty confusing and I don't want to feel drugged all the time. Ketamine? Too expensive and doesn't seem like it lasts. SCStimulator? Nah, that is surgery right? Besides, that doesn't seem to be the answer for most people either. So what is the answer?"
What if we try a combination of non-invasive ideas we can live with long-term? Can we put together some sort of treatment plan with our Doctors, our Pain Management Team, that will see us two, Five, Ten years down the road? Is that possible? A combination of medications that does help to minimize my pain or knock it down enough to let me live my life, but not so much that I feel dopey? And an exercise program that is smart and sensible that gets me moving again, on a regular basis, keeps me motivated, but helps me to not over-do so I end up in more pain?
And what about my mental attitude? Does that matter? Will that help? Who I surround myself with? What I listen to, read, watch on TV, the movies, etc. We can't choose the family we were born into but we can choose the family we surround ourselves with. We can and must also choose what we put into our heads, our minds. Find a way to filter it. There is an old business adage, GIGO. It stands for Garbage In, Garbage Out. We need to apply that principle to ourselves.
