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regional chronic pain syndrome

Read and learn more about regional chronic pain syndrome. For more, visit the Chronic Pain website ChronicPainFAQ.org

Q: What is the difference between chronic pain syndrome and complex regional pain syndrome. Also, what causes ea
each? Does anything…medication or otherwise help you?

A: As icesk8er said, they’re the same thing. “Chronic” regional pain syndrome is, as far as I know, just a common mistake. Complex regional pain syndrome is the latest name for a condition that has about a million names. The most common is reflex sympathetic dystrophy (which many still prefer over CRPS, myself included).

As for what causes RSD/CRPS, that’s a much more difficult question to answer. Really, nobody knows. There are lots of theories out there, ranging from the classical theory (that it’s a dysfunction of the sympathetic nervous system) to the latest theories about inflammation (mostly Dutch research). The truth is that someday we’ll probably find out that there are a few different things causing similar symptoms in different people.

There are lots of different treatments for RSD/CRPS. Usually, sympathetic nerve blocks are the first thing to try. I had temporary relief with those, as did icesk8ter, I believe. Some people have more permanent relief. I had even more success with continuous blocks.

Also, there are many medications to try. Usually, an antiseizure drug like Neurontin or a similar medication called Lyrica are among the first things to try. Some antidepressants like the older tricyclics (amitryptiline/Elavil and it’s relatives) are often used. There are newer antidepressants that are also sometimes used, like Cymbalta. Many RSD/CRPS patients also take muscle relaxants for spasms or other muscle problems, which are common with this condition. Some people take strong pain medications as well. I found that blood pressure medications (Clonidine and nifedipine) helped me somewhat, as they have some calming effect on the sympathetic nervous system.

Physical therapy is also really important. It’s essential for patients to keep moving so they don’t lose the use of the effected limb. It’s also important to try to keep muscles from atrophying.

There are other medications to try, and there are also a lot more interventional treatments (by that, I mean procedures and nerve blocks). Icesk8ter mentioned spinal cord stimulation, which is an implanted device that helps many people with RSD/CRPS. I had one as well, although I don’t have it anymore.

I hope this answers your questions!

Q: are we getting closer to finding a cure for chronic regional pain syndrome? (sympathetic dystrophy)?
It is nerve damage. You can not stop the damage that is done, but the doctors and nurses are trying to stop it from getting worse. Spreading, is the worse part. The pain is like a open tooth nerve any where in your body.

A: The only “cure” we have is serial sympathetic nerve blocks combined with physical therapy in an attempt to extinguish the pain. If the blocks reach peak efficacy, then you may want to consider getting a spinal cord stimulator (scs) or intrathecal pump. SCS are better for neuropathic pain if they can cover all the areas of pain.

Good luck, CRPS is a horrible disease but with the proper medications and therapy it can be effectively managed.

Q: Chronic Regional Pain Syndrome?
My husband has been suffering with CPRS since 2004. I is nerve pain on the right side of his body – waist to toe. He is in constant pain 24/7. He can’t work because he in pain. Anyone ever heard of this or know how to releive it? He already tried nerve blocks in his back and they did nothing but make the pain worse.

A: A friend of mine just had a Neurostimulator Implant for this same thing and has awesomely, fantastic results. She now has her pain under control and able to return to Nursing and off pain pills.

They use it quiet often in CPRS patients.

It uses mild electrical impulses along the spinal cord to block the pain signals getting to the brain and instead you feel a pleasent tingling sensation in the area of your pain.

You can find out more about Neurostimualtion at
www.medtronic.com.au
or
www.tamethepain.com.au

Iv’e had the surgery myself for Achalasia pain though and have had my pain decreased by about 85% and have been able to give up ALL pain killers.
My story is on the Tame the Pain site under Wendy’s Story if you would like to read how much it has helped me.

This is what, and talking to me, that made my friend decide to give the stimulator a try.
It’s a trully amazing thing to live without constant pain.

Message me through my profile if you want to chat.

Q: chronic regional pain syndrome?
i suffer from this affecting my right arm,hand,shoulder,neck and across my back and chest to midway.they are talking about doing a dorsal spine stimulator ie electrodes in my spinal column. does anyone have one and does anyone suffer this condition and what works for you. i am currently taking 60mg morphine a day and still have pain

A: Hi Helitoots,

I have had CRPS for nearly ten years after surgery on my right knee. It now involves both legs and arms in their entirety, and I have a number of other complications including dystonia in my legs & feet and problems with my stomach and heart.

Very little works for me now, though I have tried everything currently available – medications, mirror and graded motor imagery, physio, ketamine infusion, spinal cord stimulator and an intrathecal drug pump. Currently I take oxycontin (and endone if I need to do so), topamax & mobic, and receive baclofen and bupivacaine via my pump. I also do weekly physio sessions and keep up what I can at home in between times. That keeps things tolerable, but I am still in a lot of pain.

It’s a bit hard to go any further on here – there are so many things I could say. If you’ve got any particular questions or would like to talk, please feel free to email me.

Q: Chronic regional pain syndrome (c.r.p.s), any advice?
following a whiplash injury i have been diagnosed with c.r.p.s just wondered if anyone else has this condition and could give me any advice. thanks in advance x

A: Hi Cazza,

I’ve had CRPS since a knee injury nearly 10 years ago. It started in my right knee and since then has spread to both legs and is now beginning to affect my hands and arms.

The main thing, especially if you’ve only just been diagnosed, is to get yourself referred to a good pain management specialist or clinic ASAP. The key to successful management of CRPS is early diagnosis and treatment. First line treatment usually involves medication (either antidepressants or anticonvulsants, both of which are useful against neuropathic pain), sympathetic nerve blocks and physiotherapy. The latter is extremely important! There are numerous other drug treatments that can be used if necessary, as well as surgical options such as spinal cord stimulation or spinal drug pumps.

I am having a bit of trouble typing tonight so will have to keep this short, but if you have any specific questions or even just want someone to talk to please feel free to email me. I’ve been through just about everything there is to go through with this, so can certainly give you advice on what to expect with treatments, and can give you a friendly ‘ear’ if you need one.

Q: How do you deal with your Chronic Pain?
I have Complex Regional Pain Syndrome (CRPS) also referred to as Reflex Sympathetic Dystrophy (RSD). I’m 14 (almost 15), and have had this very painful disease for a little over a year and a half now, and I guess you could say that I’m having a little trouble dealing with my pain now. I used to be a competitive figure skater, and that has been pretty much taken from me so I deal with depression plus the pain. I have a Spinal Cord Stimulator (SCS) which helps with a lot of my pain, but because of many of my unique other problems like my scarring have made my SCS hard to get it to work so it gives me maximum relief. I’ve tried medications (which don’t do much), blocks, and some pain manegment mental type things, but what helps you with your chronic pain?
Most of the time on a pain scale of 1-10 I’m at least a 6, and up to a 10, but avearge probabaly a 7 or 8.
I also do know a lot about what I have, and I do work with a pain specalist who has been able to help me, but right now I guess I’m kind of stuck in the middle of another surgery, my parents are trying to switch insurance compaines so that my next surgeries (if any) will be covered (our current company has denied my most current surgeries and treatment even though they really should be paying), so basically I’m trying to figure out if there are any other ways that other people get through their pain…by the way CRPS/RSD is a neurological condition.
Most of the time on a pain scale of 1-10 I’m at least a 6, and up to a 10, but avearge probabaly a 7 or 8.
I also do know a lot about what I have, and I do work with pain specalists who has been able to help me, but right now I guess I’m kind of stuck in the middle of another surgery, my parents are trying to switch insurance compaines so that my next surgeries (if any) will be covered (our current company has denied my most current surgeries and treatment even though they really should be paying), so basically I’m trying to figure out if there are any other ways that other people get through their pain…by the way CRPS/RSD is a neurological condition. I did have an “injury” to the area which caused my CRPS/RSD, I had a knee surgery in which my body reacted badly to, and I got my CRPS/RSD.
I do have a lab which I do spend a lot of time with and she does help me with my pain…the only thing is that she obvioulsy doesn’t understand that when she rubs up against my leg that it causes me pain. My RSD/CRPS is in my right leg. I have looked into the morpihne pumps, but have decided that they probalby wouldn’t work for me because medications make me very sick, and they don’t usually work very well for my type of pain…thanks for all of your answers so far.

A: First of all, let me commend you on your obvious intelligence in your well thought out question. At 14 years old, you seem to have a true gift for writing. Good question..

Chronic Pain is certainly a difficult thing to deal with. I will not go into my own aches and pains here, so I don’t bore you to sleep. But you ask…how do those of use that deal with it 24/7, handle our pain?

One of the most important things to help alleviate MY pain, is knowing my daily limits. Not overdoing, but yet; making sure that I get the proper exercise. It’s true what they say, “If you don’t use those muscles, you’ll lose them.”
I make sure that I take my pain medication on a consistent schedule, because if I don’t, the pain is too great for ANY medication to help.

I use relaxation techiniques to help deal with my discomfort. This helps a great deal. Very hard to do though, once the pain gets a grip on you. But you can do it.

Massage, in my case, has helped quite alot. This also helps my body release their natural endorphins so I don’t need as much pain medication, that I would otherwise.

Does consistent pain cause depression? You bet it does. How do I relieve this symptom? I try to focus on the positives in my life. The most important one…being ALIVE. Sure pain is a constant companion, but a positive attitude gets me through the most difficult times…

I sincerely hope for the best for you. You are dealing with alot, at such a young age. I hope that you can get that pain under control, so we may see you return to figure skating and possibly see you in the next Olympics. Best of luck…and hang in there. You are NOT alone.

Q: Any others out there with chronic pain?
I’m 15 and have Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy, and I was just wondering if any other people out there had chronic pain- what is your diagnosis, what treatments have you tried, and what helps your pain? Thanks!

A: I was just diagnosed with RSD myself a few days ago. I had a major knee surgery in December and a major nerve was severed and it never regenerated and I guess it sent my nervous system into a frenzy. Right now I am on oxycodone, but I am starting to take quite a few so I am not sure what my doctor will suggest at my next appointment. There is an RSD website that has patient testomonials and different treatment options. Maybe you could look on there for some ideas. I am too new to this myself to be of much more help than that. Good luck to you.

Q: How do you distract yourself from pain?
I’m 15 and have chronic pain (complex regional pain syndrome/reflex sympathetic dystrophy in my right leg), and I typically find that when I am able to distract myself from my pain that I do better. I’ve found that baking/cooking, music are a few things that help me distract myself from my pain. What helps you? Also what helps you sleep at night even though you are in pain?

A: Paint-by-number. You’ll be so focused on trying to get the crummy brush the company supplies to not push the colors over into another number that you won’t have much brain power left for your pain.
Take a hot shower or bath right before going to bed. Your body will be more relaxed and you should have an easier time for sleeping. Wordy or boring books are good too. I suggest anything from the 18th century.

Q: Anybody living with Chronic Pain, and how do you deal with it?
I’m 14, and have Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (it’s a neurological condition), what can I do at home (my doctors haven’t been much help lately) to help with the pain?

A: I have fybromyalgia and am in pain most of the time.My doctor gave me medicine and it eases it a little but I have learned to live with it.I am so sorry to hear of your Illness at such a young age.Maybe you should find another doctor if your present doctor isn’t helping you.

Q: does 20ml of Endep help pain?
I have a CRPS (Chronic regional pain syndrome) and I have tried almost ever medicine there is. Im on Endep now, but only taking 20ml’s because im only 15. I haven’t noticed any difference in my pain, and im just wondering if being on the medi is a waste of time. Its making me sick, and my doctor is thinking of putting me up to 30ml’s.
Will it nudge the pain just a little?

A: Hi taylaa,

I’m sorry that you’re having trouble at the moment. It’s really quite difficult to answer your question – CRPS differs so much from person to person, as does response to different treatments. Really, the only way you’ll know if it’s going to help is to try it, but I can understand your reluctance if the 20mg is making you feel ill as it is. As well as pain relief, amitriptyline is used in CRPS to help with sleep, so if you’re not sleeping it would probably be worth trying the increased dose. I was on 30mg with no effect other than feeling unwell – one minute I was agitated and the next completely bombed out. It did nothing for pain or for sleep.

If you don’t mind me asking, what other medications have you tried? Have you been through other interventions, such as sympathetic blocks? Ketamine? Have you got a good physiotherapist? There are certainly a huge number of other options out there, so don’t give up hope.

Good luck, and I hope that you find something to give you some relief. I’ve had CRPS for 9 1/2 years so I know how wearing it can get, especially when you go through treatment after treatment and get nowhere. If you want to talk or you have any questions, please feel free to email me.

Q: Does 20ml of Endep help pain?
I have a CRPS (Chronic regional pain syndrome) and I have tried almost ever medicine there is. Im on Endep now, but only taking 20ml’s because im only 15. I haven’t noticed any difference in my pain, and im just wondering if being on the medi is a waste of time. Its making me sick, and my doctor is thinking of putting me up to 30ml’s.
Will it nudge the pain just a little? and how long will it take?

A: Hi taylaa,

I’m sorry that you’re having trouble at the moment. It’s really quite difficult to answer your question – CRPS differs so much from person to person, as does response to different treatments. Really, the only way you’ll know if it’s going to help is to try it, but I can understand your reluctance if the 20mg is making you feel ill as it is. As well as pain relief, amitriptyline is used in CRPS to help with sleep, so if you’re not sleeping it would probably be worth trying the increased dose. I was on 30mg with no effect other than feeling unwell – one minute I was agitated and the next completely bombed out. It did nothing for pain or for sleep.

If you don’t mind me asking, what other medications have you tried? Have you been through other interventions, such as sympathetic blocks? Ketamine? Have you got a good physiotherapist? There are certainly a huge number of other options out there, so don’t give up hope.

Good luck, and I hope that you find something to give you some relief. I’ve had CRPS for 9 1/2 years so I know how wearing it can get, especially when you go through treatment after treatment and get nowhere. If you want to talk or you have any questions, please feel free to email me.

Q: Best way to help deal with pain?
I am 15 and a chronic pain patient, and I’m trying to figure out some ways to help deal with my pain and get through school. I have Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy. I am currently working on trying to get into a new doctor and seeing if I can get accepted to an expiremntal pain manegment program (since I have exhausted many convetional treatments), and in the time being I am looking for suggestions to deal with my pain, any would be greatly appreciated. Thanks!

A: One of the first places to go would be a reputable, informative sight such as : http://www.rsds.org/index2.html RSD and CRPS is a little understood, extremely painful disease (it ranks higher than Cancer and MUCH higher than childbirth on the McGill pain index chart). It is important to educate yourself regarding the disease as very few Dr’s know how to treat it, and early treatment is crucial to any sort of recovery. It is also very important to have someone to “vent” to if nothing else, as the Pain and restriction of activities cause depression easily. That support can be from family, friends, or an online support group, such as the RSD group on yahoo groups. this group is also a great place for family/ friends to join as they will see how terrible this disease is and how it’s not as rare as people think. Good luck to you.

Q: I’m 15, and have chronic pain?
I have Complex Regional Pain Syndrome/Relfex Sympathetic Dystrophy, in my right leg. I’m super frustrated because I feel so different from any other teens. What can I do to help feel more comfortable and to help explain to my friends/ other teens when I’m in severe pain?
I’ve had my RSD/CRPS for almost 2 years, and I’ve had many, many treatments done, which all have failed. I have also been in phsysical theraphy which made my pain get worse and begin to spread.

A: I think you and I both know how difficult it is to live with RSD, especially at our ages. I’m pretty sure that I don’t have any great advice on feeling comfortable in high school with this disease, as I never achieved that particular victory. However, I did survive and graduate from high school (and college as well) with RSD.

Over the years, my approach has changed somewhat. In high school, I really didn’t know how to let people know when I was in pain. Now, I sometimes don’t say anything, and I sometimes just say something like “my leg hurts” when I feel it’s necessary.

I guess I’ve decided that I’d rather not make a big deal out of it if I can avoid doing so…like you, I feel that it separates me, and not so much in a good way. Sometimes it’s unavoidable, like if I need to ask if a certain activity is doable for me, or if I need to explain why I have trouble walking. Then, I generally tell people that I have a neurological problem with my leg. If they want to know more, I explain a little bit and tell them what it’s called. In nine cases out of ten, people are fine with the first explanation.

My really close friends know more, of course, and I can tell them when I’m having a bad day. Ususally they can tell just by how I’m acting (or how I’m walking). I’ve explained it all to them pretty thoroughly, and although they can’t fully understand what it’s like, they accept that I know what I’m capable of and what I need.

Part of this acceptance is simply maturity. Because I’m a few years older than you, so are my friends, and they’ve learned to accept what is different. High schoolers are a little more judgmental, which is a difficulty I encountered when I was your age and younger.

Right now, I’m in the position of having to decide how much about RSD to divulge to my new coworkers and the kids I will soon be responsible for as a part of my work. A few know a bit, and I think that they have all started to realize that there’s something wrong with my leg. I’m not sure if or when I’ll go into detail about what RSD is. Right now, I’m just careful about guarding my leg and my responses to pain when that fails.

I hope this helped a little bit. Remember, you can talk to me about this stuff anytime you want. You have my email address, right?

-B

Q: are students studying to be a neurosurgeon required to take a course in diagnosing rsd?
RSD (reflex sympathetic dystrophy) is also known as CRPS (chronic regional pain syndrome) and Causalgia. Causalgia is the worst of the forms of the disease and that is what I have been diagnosed with.

A: Physicians are required to know about many many illnesses, I doubt an entire course would be dedicated to diagnosing RSD, in fact I can guarantee you of it. I’m sorry about your diagnosis.

Q: Chronic Neurological Pain?
Hello! I suffer from nerve pain… sometimes is called Regional Pain Syndrome, or Complex Regional Pain Syndrome!
I found out there is another way of calling it: Chronic Neurological Pain! Does anyone here suffer from nerve pain? If so how long? and what treatment as help cope with it?

A: Typical first line approach to neurologic pain is Amitriptylline 25-50 mg nocte; anti-depressants are very effective in blocking this type of pain. Brufen is the anlagesia of choice – diamorphine in extreme cases. (Morphine can now be delivered to pain sites very effectively via buprenorphine transdermal ‘patches’). Other medical approaches might also include (under caution and strict management) the use of anti-epileptic drugs such as Gabapentin and Pregabalin. Muscle relaxants may also employed.
You do not say how your pain originated/ what triggers it/or even what areas are affected!!!
Either way the subject is a complex one, and severe chronic pain is best managed by a multi-disciplinary approach which involves not merely drugs, but assessment, advice, education and treatment from nurse specialists, physical therapists, occupational therapists and neurologists ie an entire team, normally to be found working in hospital ‘pain management’ clinics. You would be wise to get yourself a referral, via your primary care doctor or specialist.
As a last resort, and depending on your level of disability, anaesthetists can ‘dry-needle’ pain sites and can also apply total nerve blocks to completely eliminate focal areas of pain. Unfortunately these have only a temporary effect and therefore are not a total solution.
Best wishes.

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