CRPS Guidebook

• Yes! More than 75% of people who get an early diagnosis and receive good treatment will recover well.
• Example: Research shows that if treated early, 3 in 4 people can make a full recovery.

• If you have had CRPS for several years, the complete disappearance of symptoms is less likely but still possible. Even if the condition does not completely disappear, you can still experience meaningful improvements in your symptoms.
• Example: Research shows that even for people who have had CRPS for several years, 30% can achieve full remission with a good treatment plan.

• Effective treatment largely involves therapy skills and techniques that you will apply on your own.
• Doctors can provide treatments that help in the process, and therapists can be great advisors, motivators, and support. However, the most important treatments are those you will do for yourself at home on a daily basis.

Generally, recovery is not fast. It’s important to have reasonable expectations. With good therapy, recovery can take several months. However, some people may have some symptoms for years.

This information is important to know for a few reasons:

1. Mindset: Understand that you will be dealing with a serious challenge for a while. There is light at the end of the tunnel, but this condition will play a role in your life for a significant period of time.
2. Expectations: If you expect the condition to go away quickly and it doesn’t, you might become discouraged and stop your treatment efforts, which can actually hinder your recovery.
3. Treatment Focus: There is no quick-fix treatment. While many treatments can help ease your suffering during the process, avoid getting stuck in a search for the perfect cure, as this can distract you from important therapy efforts.

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• Discuss this with your doctor, but do not panic. It’s very common for symptoms to come and go or temporarily worsen during your recovery journey.
• Setbacks, although challenging, do not necessarily mean your condition is getting worse.

• Being active in your recovery will improve your chances of success and potentially speed up the process.
• However, regardless of how hard you work, recovery will still take time. It's not a matter of working twice as hard and getting better twice as fast.
• Typically, even the best recovery journeys take many months.

• Typically, CRPS is triggered by a small injury (like a scrape or bone fracture).
• After an injury, the body launches a healing response called inflammation. Inflammation involves the release of chemicals that cause swelling and pain to help heal and protect the area.
• In CRPS, this healing process gets out of control and doesn't stop, leading to excessive swelling and pain. This process also changes the nerves in the injured area, spinal cord, and brain, causing even more pain and other symptoms.
• Once CRPS sets in, these nerve changes keep the symptoms going even after the original injury has healed.
• Treatment focuses on calming and healing the nerves, which helps reduce and gradually eliminate the symptoms.

• Inflammation: The body's natural healing process can get out of control, and release too many of the chemicals that lead to swelling and pain. This aspect of the condition is more common in the early stages of the condition (and less relevant later on in the condition).
• Immune Response: The chemicals that usually help your body fight off infections can behave differently in people with CRPS creating more pain sensitivity.
• Nerve Changes (plasticity): The way your nerves communicate with each other can change, not just in the painful area, but also in your spinal cord and brain. This can make your nerves more sensitive and lead to increased pain.

• No, CRPS is not necessarily a sign that something is physically broken.
• CRPS is a condition that affects the nervous system, causing pain and other symptoms even when there is no ongoing injury or damage to the limb.
• It involves abnormal pain signaling and sensitivity in the affected area.

• Not necessarily. CRPS can cause severe pain without any current physical damage.
• The pain is due to abnormal nerve signaling rather than ongoing injury. It's important to understand that the intensity of the pain does not always correlate with the severity of any physical damage.

• No, the presence of ongoing pain does not mean that the original injury has not healed.
• CRPS can persist even after the initial injury has healed because of changes in the way the nervous system processes pain.

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Patient Quote

“I naturally thought that pain=damage and that every painful step meant I was doing more damage.

It wasn't until I started studying pain science that I realized how complex pain is and that it's not so simple as damage where the pain is felt.

I realized that even though I felt the pain in my hip, that it was more of a whole person problem. That my nervous system was a bit overreactive, that my stress, frustrations, anger and grief about losing my career were affecting my pain, that my limiting my movement and engagement with my life were making my pain worse.

This knowledge helped reduce my fear and worry and allowed me to re-engage with my life again. By focusing on the things that I valued, without worrying about the pain so much, over time my pain improved and my life got bigger. And I am grateful to be relatively pain free now.”

No! CRPS is a real condition, with measurable physical changes in the body.  It’s not “all in your head.”

• One of the most difficult aspects of dealing with pain is that people doubt you. You might look fine on the outside, but feel tremendous pain in your body - a pain that may be invisible to others.
• In the past, if doctors couldn’t find the cause of a person’s pain, they assumed it was just “in the head”.
• We now know that all pain has a real cause, even when the doctor can't find it. Pain is not imagined or “just in your head” and just because pain is invisible, doesn’t mean it’s not real.

• Remind yourself that no matter what others say, your pain is real and based on biology.
• Remember that it is not you they are invalidating, they are invalidating pain that they don't understand.- If you're comfortable, let them know that their doubt hurts you.
• Remember, you don't need their approval to know your pain is real and that you matter.
• Even if pain can't be explained, it's still real. Always.
• Hang in there, and know that you're not alone in this journey!

• The journey to a CRPS diagnosis is often long and challenging, filled with uncertainty.  You’re not alone in having a hard time with the process, and the challenges are not your fault.
• Diagnosing CRPS is complex because there isn’t a single test that can confirm it. We are used to medical conditions like strep throat or diabetes where there is a simple test that gives a clear answer.  CRPS isn’t like that, and the process is almost always filled with uncertainty as doctors slowly work through ruling out other possible conditions.

• Medications, devices, or medical procedures do not cure CRPS. However, they can relieve symptoms enough to allow you to do your therapy.
• Rehabilitation therapy techniques are the main and most effective treatment for CRPS.

• Every treatment has variable success rates. Just because a treatment has worked for someone else doesn't guarantee it will be effective for you.
• Similarly, a treatment might be helpful for you, even if it didn’t help someone else.
• Have a discussion with your doctor or therapist and talk through each possible treatment.

When discussing treatment with your doctor, ask:

• What percent of patients benefit from this treatment?
• What are the expected benefits and how long do they last?
• Are there possible side effects?
  • How common are the side effects?
  • How severe are the side effects?
• What's the cost of this treatment?
• Is it a one-time treatment or something we need to repeat?
• How much effort is needed from me?
• What is the role of this treatment in my overall plan?

Medications do not cure CRPS. However, they can relieve symptoms enough to allow you to do your therapy.

• There is no medication specifically for CRPS. Doctors can choose from a lot of medications used for other conditions, which may be helpful.
• It will be a process of trial and error together between you and the doctor.
• The more information you can give the doctor ahead of time, the more they will be able to make better decisions on which medication to try.

• What medication are you taking (currently) for CRPS?
  • Does it help? Are there side effects?
• What medication are you taking (currently) unrelated to CRPS?
• What medications have you taken in the past?
  • Did they help? Were there side effects?

1. How long will it take to know if this medication is helpful for me? (Days, weeks, or months?)
2. Will we need to adjust the dose a few times to find the amount that is most helpful?
3. Do I need to take this medication every day (no matter what), or only when I have pain?
4. How much pain relief do patients usually get from this medication?
5. Does this medication help anything other than pain (mood, sleep, energy, etc)?
6. If this medication is helpful, how long will I be taking it? (weeks, months, years, forever?)
7. Are there any risks in taking this medication?
   1. Side effects?
   2. Does it interact with my other medications?
   3. Is this medication addictive? Will I be able to stop at any time?
8. Are there any non-medication alternatives I should try first?
9. Is this medication essential, or can I choose whether I want to take it?
10. What role does this medication play in my overall treatment plan?

• Self-therapy consists of skills and strategies you can apply on your own to treat your condition.
• You might think that self-therapy skills, especially when it is low-cost or free, cannot help with a serious medical condition like CRPS. However, this is a myth. The most effective treatments for changing your body's condition and treating CRPS can be performed at home.
• While self-treatment is done independently, you will likely need the support of a therapist, coach, or healthcare professional to provide guidance, feedback, and motivation.

1. Learning: Understanding your condition so you can make good decisions.
2. Training: Techniques to reduce sensitivity to movement, touch, and activity.
3. Life engagement: Strategies to stay involved in daily life despite the difficulties of CRPS
4. Healthy body: Giving your body what it needs to heal (like getting enough sleep, eating nourishing foods, and calming your stress system).
5. Emotional support: Boosting your mental ability to deal with the very real challenges of this condition, including strategies to promote healthy relationships.

When living with CRPS, it’s common to experience difficult emotions.

We mention them here for two reasons:

• To let you know that if you are feeling this way, you are not alone.
• To highlight that there are strategies for managing these feelings. You can learn ways to deal with these so they don’t overwhelm you or hold you back.

Grief: Feeling a sense of loss over previous physical abilities and lifestyle.

Worry: Concern about whether the condition will get better, how you can overcome the difficulty, and how you can function in your life including financial challenges.

Change in identity: Feeling like you are no longer the person you used to be.

Hopelessness: Feeling despair and a lack of hope about the possibility of recovery or improvement.

Embarrassment / Shame: Feeling embarrassed or ashamed about not being able to fulfill your roles in the family or society.

Guilt: Feeling bad about needing others to help you or feeling like you are a burden on other people's lives.

Loneliness: Feeling a loss of closeness and relationships with friends or family, and spending more time alone.

Acknowledge Your Emotions: Allow yourself to feel and recognize your emotions, and know that they are common and understandable for people living with a life challenge such as CRPS.

Seek Support: Connect with others who can listen and provide support.  This could include a therapist, friends, family, or peers who are or have gone through tough times as well.

Mental Health Techniques: There are effective techniques you can learn which will help manage these emotions (we will discuss these in detail elsewhere).

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‍Patient Quote About Overcoming Shame

“Shame is a tough thing to talk about. It’s hard to be that vulnerable, that bare. It’s hard to let the world see into those deep dark places. To let the world see your cracks.

But I also know I’m not alone. That the shame I have felt in my life, the shame I have felt with my pain, is not so shocking as it seems. I think it likely that many folks who live with persistent pain have felt ashamed of it in some way, at some point along their own pain path, and it’s probably hard for them to think about it, let alone talk about, too.

I didn’t ask for help. I had always been strong, fiercely independent, a problem solver. A bad ass. Tough, strong, fit. So I was too ashamed to ask for help, fearful that it would prove I was weak, unworthy, helpless.

I completely withdrew. I rarely spoke to anyone, not knowing how to explain my pain. What it was like to be able to think of nothing else, to go through every minute of every day thinking only of pain, of darkness, of bleak futures, of more pain.

On top of all that, and it seems so ridiculous to me now (more shame), I was terrified of getting fat, of losing my fitness, my physique. That was a part of my identity too, after all: being jacked, strong, lean, and tough.

I found that things started to change for me when I started focusing on the things that I valued most in my life, the things that mattered to me, the things I found meaningful. When I was able to start doing that I came to realize that I was still that same person, just older, wiser, changed by pain. And we all change over time, we all go through experiences that alter the course of our lives and if we are flexible and persistent enough, we can navigate that course with grace, even if it's difficult.

• When it hurts, it's normal to want to avoid touching or moving the affected body region. However, too much avoidance tends to worsen the condition.
• It's crucial to use the affected limb within your limits. Your therapist can teach you techniques and strategies to gradually use and touch the limb, making it more tolerable.
• This process of using the limb again is called “desensitization” or “body-relearning”.

• The key to using the limb is reassuring yourself that, despite the pain, you are safe and in control.
• Using relaxation and breathing techniques while you move or touch the affected area is very helpful for training your mind and body to recognize that you are safe.
• Your therapist will also show you how to work gradually, starting within your limits and expanding them over time.

• In CRPS, your body can make you feel pain even when there is no actual damage. For example, gentle touch or movement might cause real pain, but it does not harm your body.
• Feeling pain does not necessarily mean you are causing damage or worsening the condition. Your therapist will guide you on how to safely use your body without causing harm.

• Scientists have found out that there are special pathways in our brain and spinal cord that can help us feel less pain. These pathways release natural chemicals that can act like painkillers, and they work really well without causing any side effects.
• The scientists call these pathways the "anti-nociceptive" pathways, and they release chemicals like endorphins, enkephalins, serotonin, and dopamine.

• Unfortunately, there are also pathways in our brain and spinal cord that can actually make our pain worse. These pathways release chemicals that amplify our pain, and they get triggered when we feel worried, stressed, scared, or too focused on our pain.
• The scientists call these pathways the "pro-nociceptive" pathways, and they release chemicals like CCK.
• These pathways don’t “create pain” but they increase what would otherwise be just a small amount of pain.

• The good news is that there are many ways we can help our brain become better at using the pain-relieving pathways and quieting down the pain-amplifying pathways.
• This is really hopeful, because it means there are many strategies and options that we can use to improve our pain situation.
• This information is also reassuring.  When pain flares up, it doesn't always mean the condition is getting worse or that something is wrong in the body. It could be due to a bad night’s sleep, stress, or some other influence. There are many factors that affect our pain perception.

• What happens in the brain doesn’t stay in the brain! The brain chemicals that influence pain do not simply reside in the brain. These pain changing chemicals trickle down into the spinal cord, and change nerve function throughout our body.
• This means that retraining neural pathways is not just a psychological endeavor; it can have a real, physical impact on the nervous system throughout the body.
• Retraining brain pathways, can lead to changes in the brain's structure and function. These changes can, in turn, influence the release of natural chemicals throughout our body, ultimately affecting how we experience pain.
• For individuals living with persistent pain, understanding this connection between the brain and the rest of the body is crucial.  Retraining neural pathways can lead to real changes in the nervous system, offering a promising avenue for anyone seeking relief from persistent pain.

• Changes in Roles: When someone is in pain, their ability to fulfill their usual roles and responsibilities can change. This shift can put a strain on relationships, as partners, family members, or friends may need to take on additional tasks.
• Difficulty Talking About It: People in pain may find it challenging to talk about their experiences. This can lead to misunderstandings and frustrations in relationships.
• People Not Knowing How to Help: Loved ones often want to help but may not know the best way to do so, leading to feelings of helplessness or frustration on both sides.

Withdrawing: It is common for individuals in pain to withdraw from social activities and interactions, leading to feelings of isolation and loneliness.

• Positive Effects of Supportive Relationships: The presence of supportive relationships can significantly influence how the body processes pain. When connecting with by caring and understanding individuals, the body tends to release chemicals that help reduce pain and promote healing.
• Negative Effects of Unsupportive Relationships: Conversely, relationships that are unsupportive or stressful can exacerbate pain. Negative social interactions, feelings of loneliness, or emotional distress can increase pain.
• Studies show that even animals experience changes in pain perception based on their social environment. For instance, animals that are isolated or subjected to stressful social conditions exhibit higher pain sensitivity, while those in positive social environments show improved pain tolerance and faster recovery.

Learning these skills is an important part of any good rehabilitation program.

• Asking for Help: Learning how to ask for help effectively is crucial. This involves being clear about your needs and what kind of assistance would be most beneficial.
• Explaining Your Condition: Being able to explain your condition to others can foster understanding and support. It's important to communicate the nature of your pain and its impact on your daily life.
• Navigating Relationships: Developing strategies to manage and nurture your relationships while dealing with pain is essential. This includes setting boundaries and ensuring that your relationships remain supportive.
• Self-Advocacy: Advocating for yourself involves communicating your needs and preferences to healthcare providers and loved ones. This skill is an important part of a good rehabilitation program.

Gradually restoring your ability to move is a crucial part of the rehabilitation process. Creating your personalized plan will usually require the guidance of a therapist or coach.

Initial Movements: Begin by moving parts of the body that are not affected by pain. For example, if your arm is affected, it’s important to keep moving your legs (e.g., walking). This body movement can provide overall health benefits and indirectly benefit the affected area by improving circulation, reducing pain, and promoting a sense of well-being.

• If moving the affected body area is too difficult, some people start with "movement imagery." This well-researched approach involves watching others move or imagining oneself performing the same movements, envisioning the movements as comfortable and pain-free.
• These mental exercises are typically done for a few minutes (3-10 minutes) every hour. They are most effective in short sessions, repeated often.
• Although these exercises might seem unusual, they are one of the most well-researched approaches for people with CRPS. Despite not physically moving, mental practice can activate the brain's movement centers and help prepare the body to move with less pain.

• Gentle Movements: As confidence and comfort with movement increase, the therapy program progresses to include gentle movements of the affected body part. Starting slowly and carefully is key.
• Meaningful Activities: Engage in activities that are meaningful to you, even if initially they are only partial or limited. Doing so can help maintain motivation and provide a sense of accomplishment. Examples for the hand could include making jewelry, crafts, or even a bit of gardening with a house plant.