CRPS: What It Is and Where to Start After Diagnosis

If you’ve just heard those four letters, you probably walked out of the appointment with more questions than answers. That’s normal. You are not crazy, and you are not alone. These symptoms are real, and they start to make sense when we look at the nervous system, which is where this article begins.

What is CRPS, in plain words?

CRPS is a condition where pain stays far longer, and runs far stronger, than the original injury would explain. It typically develops after an injury, a surgery, a stroke or a heart attack, according to Mayo Clinic, and pain, swelling, redness, temperature changes and sensitivity to cold and touch usually come first.

You may also hear the old name, reflex sympathetic dystrophy, or RSD. The two names point to the same condition, and Mayo Clinic Proceedings62332-X/fulltext) describes CRPS as formerly known by that name.

There are two types. Type 1 happens without a confirmed nerve injury, and Type 2 happens after a distinct nerve injury. Type 1 is by far the more common, about 90% of cases according to Mayo Clinic.

Nobody has a complete explanation for why it happens. Experts aren’t sure of the exact causes, though nerve damage is suspected as one of the triggers, as Johns Hopkins Medicine puts it. Its list runs from abnormal nerve signaling and increased sensitivity of pain pathways to changes in the immune and inflammatory systems and dysfunction of the sympathetic nervous system.

That sympathetic system is the body’s fight-or-flight response, and it’s the piece we pay closest attention to at The Spero Clinic. Dr. Katinka van der Merwe, DC, compares pain to the warning light on a car’s dashboard. Covering the light doesn’t repair the engine. So instead of asking only how to quiet the pain, we ask why the nervous system is producing it, and we look at how the central and autonomic nervous system is responding. If you want the deeper version, Everything to Know About Complex Regional Pain Syndrome goes further.

Did I do something to cause this?

Most people who break a bone or have surgery never develop CRPS. The Keck School of Medicine of USC reports that CRPS occurs in about 1-2% of patients who have had fractures and in approximately 2-5% of patients after peripheral nerve injuries.

Dr. Katinka describes the injury as a match thrown into a kitchen that was already filling with gas. The match is the trigger, but it isn’t the cause, which is why one person develops CRPS while thousands with the same injury recover. If you keep asking yourself what you could have done differently, CRPS Triggers and What Could Have Started It is worth reading.

What should you do in the first week after a CRPS diagnosis?

Start by collecting information, not by making big decisions. Most of week one is small, practical work, and it makes every later appointment more useful.

• Ask the diagnosing clinician which criteria they used, whether that was the Budapest Criteria or something else, and what they saw on exam.
• Request copies of your records, imaging, and any lab or nerve testing.
• Write down the date of the injury or surgery and the date the pain started to feel wrong.
• Begin a daily symptom log covering pain, skin changes, sleep, and what you could and couldn’t do.
• Book a visit with a clinician who treats CRPS regularly.
• Tell one person close to you what’s going on, so you aren’t carrying it alone.

Booking sooner matters. Treatment is likely to be most effective when started early in the course of the illness, according to Mayo Clinic. That isn’t a reason to panic. It is a reason not to wait and see for months.

If the diagnosis is still uncertain, How Is CRPS Diagnosed? explains what clinicians look for. A second opinion is reasonable too, since Stanford Medicine notes that CRPS can be missed because its early signs can look like normal post-injury inflammation.

The records and the log do more than organize you. Dr. Katinka writes that many people with CRPS end up working out the diagnosis themselves and then having to prove it to their own doctors, and a dated paper trail makes that conversation far easier.

Which specialists should you see?

See a clinician who works with CRPS often, and be ready to build a small team around you. No one person covers every part of this condition.

This is our reading of what patients tend to need, your situation may differ, and none of it replaces an evaluation by your own clinician, or emergency care when you need it.

The treatments on the table are fairly standard. Johns Hopkins Medicine lists pain medications, physical therapy, nerve blocks and, in some cases, neuromodulation, meaning electrical therapies that target pain signaling. To see how that compares with what’s current, read New Treatments for CRPS.

Bring these questions to the first visit.

A good clinician won’t mind any of these. If a question gets defensiveness or a promise, take note of that.

What should you track every day?

Track a few things at the same time each day, and keep it short enough that you’ll actually do it. A log you keep for three weeks is worth more than a perfect one you drop after three days.

Phone photos of the affected limb, taken in the same light, are often more useful than words. Bring the log and the photos to every appointment.

Most people leave digestion and dizziness out because they seem unrelated to a sore arm or leg. In our work they often aren’t, since the autonomic nervous system runs both, and CRPS and The Digestive System explains why. Write them down anyway.

Will CRPS go away?

For some people it eases, and for others it lasts a long time. Nobody can predict which will be true for you, and any page that does is guessing.

The range is wide. Mayo Clinic notes that in some people signs and symptoms go away on their own, and in others they may persist for months to years. That honesty is the reason we say healing takes time and progress is individual.

So judge progress over weeks and months, not days. A bad Tuesday doesn’t undo a good month. If you want to see what progress can look like, What Does CRPS Remission Look Like? covers it without overpromising.

We don’t promise a specific outcome at The Spero Clinic, and we’d be wary of anyone who does. What we can say is that hope, grounded in the next honest step, is a better place to start than a guarantee.

Common mistakes in the first weeks

A long stretch of "let’s see if it settles" can cost you time, especially since early treatment tends to work better.

A second mistake is stopping the limb’s use out of fear. Protecting a painful limb makes sense. How much movement is right for you is a question for your therapist and clinician, so ask it early and ask it again as things change.

Third, don’t believe the first page you read, including this one. Some sites promise a definite result, and others describe a fixed timeline that current references don’t support. Check what you read against sources that name where they got it.

Last, don’t carry it silently. People with CRPS often feel they have to prove they’re really hurting. If someone dismisses your symptoms, get a second opinion. And if the weight of it ever feels like too much, please tell a clinician or someone you trust right away.

Frequently asked questions

Can you learn to live with CRPS?

Many people build a workable life around it, though rarely alone. It usually takes several things working together: movement, sleep, support, and clinicians who listen. We can’t promise how that will go for you, and nobody honestly can.

Can CRPS cause leg pain?

Yes, and Mayo Clinic’s overview says CRPS usually affects an arm or a leg. Leg and foot pain after an injury or surgery that seems out of proportion to the original problem is worth bringing to a clinician who knows CRPS.

What are the treatment options for CRPS?

Pain medications, physical therapy, nerve blocks and, in some cases, neuromodulation are the options Johns Hopkins Medicine lists. Which mix fits you depends on your history and symptoms, so ask a clinician to explain the reasoning behind each one.

Does CRPS type 1 go away?

Sometimes. For some people the signs and symptoms go away on their own, and for others they persist for months to years, according to Mayo Clinic. Type 1 is the more common type, and no one can say in advance which path you’ll follow.

Your next step today

Open your phone and take one photo of the affected limb, then write down today’s pain, sleep, and what you could and couldn’t do. That’s your symptom log started.

When you’re ready to read more about how we think about the condition, how we treat CRPS is the place to go.