Watts Complex Regional Pain Syndrome (CRPS) & Refractory Pain

Complex Regional Pain Syndrome (CRPS) and Chronic Refractory Pain are two types of long-standing pain conditions that are notoriously difficult to treat — and even harder to explain. They involve abnormal responses within the nervous system, where pain signals become amplified, persistent, and often detached from the original injury or cause.

CRPS is known to develop after trauma, surgery, or in some cases even minor injury — though in some cases, the clear cause cannot be pinpointed. It usually begins in one limb and causes symptoms that include burning pain, sensitivity to touch (allodynia), temperature or colour changes in the skin, and swelling. Over time, it can spread or become more generalised.

Chronic Refractory Pain, on the other hand, describes pain that is severe and disabling and resistant to treatment. It often overlaps with other conditions — including EDS, peripheral neuropathy, migraine and central sensitisation — and then becomes its own self-sustaining burden, separate from the original cause.

💥 Watts Causing It?

CRPS is often triggered by injury, surgery, infection, or even a minor trauma that doesn’t fully explain the degree of pain that follows. It’s believed to involve both the peripheral and central nervous systems — where the body essentially develops a pain response that doesn’t switch off.

Chronic Refractory Pain doesn’t always have a single trigger. Instead, it tends to develop gradually in people with complex medical histories, nervous system sensitisation, or other chronic conditions that affect healing and nerve signalling. In many cases, pain itself becomes the problem — persisting long after the original issue is resolved.

In my case, I’ve been diagnosed with both. The pain is real, it’s ongoing, and it doesn’t respond well to typical treatments. While various theories exist about what may have triggered these conditions in me — including trauma from multiple surgeries and the underlying tissue fragility caused by EDS — the reality is that while knowing “why” might be nice, it doesn’t change the way these conditions are managed or treated.

🩻 Watts The Diagnosis Process?

Diagnosis of CRPS is clinical — based on recognised patterns of symptoms and the exclusion of other conditions. My diagnosis was based on:

• Persistent, burning pain (in more than one limb in my case)
• Skin temperature or colour changes
• Swelling or sweating in the affected area
• Sensitivity to touch or movement (allodynia)
• Symptoms that don’t match the severity or location of the original injury

Chronic Refractory Pain is typically diagnosed after other conditions are ruled out, and when standard treatment options have failed to provide relief. It’s not a diagnosis that’s given lightly — it reflects the complexity of long-term, treatment-resistant pain that continues to impact function and quality of life.

🩺 Watts The Management Team?

Both CRPS and Chronic Refractory Pain are notoriously difficult conditions to treat and require a multidisciplinary approach. Health professionals involved include:

• Pain Specialist – for advanced interventions, medication trials, and nerve blocks
• Neurologist – to assess and monitor nerve involvement, and also administer pain treatments (such as nerve blocks and ketamine infustions)
• Physiotherapist – for movement-based desensitisation and pacing; plus Pilates and hydrotherapy when tolerated
• Pain Psychologist – to support mental health and pain coping strategies
• Occupational Therapist – for activity modification and energy conservation

In my case, the goal is not to eliminate the pain entirely — but to reduce its impact and support function in daily life. Pain is a constant companion in my life (thus the title of this website), and finding ways to live alongside it is a key focus.

🧩 Related Conditions

CRPS and Chronic Refractory Pain often overlap with other neurological, connective tissue, and autonomic conditions — many of which I also happen to “collect,” making them like the painful versions of concert memorabilia. These include:

• Ehlers-Danlos Syndrome (EDS)
• Mast Cell Activation Syndrome (MCAS), Hereditary Alpha Tryptasemia (HaT) & Allergies
• Migraine & Headaches
• Peripheral Neuropathy, Raynaud’s Disease, Restless Leg Syndrome (RLS)
• Postural Orthostatic Tachycardia Syndrome (POTS)
• Sphincter of Oddi Dysfunction (SOD) & Irritable Bowel Syndrome (IBS)
• Temporomandibular Joint Dysfunction (TMJD)
• Tinnitus (including Pulsatile Tinnitus)

…if you’re wondering what it’s like to juggle all of the above while also trying to do life? You can always visit my blog — where I document the chaos, the coping, and the questionable attempts at pacing. Sparkle. Swear. Smile. Survive. Repeat.

You can also visit the Helpful Links page for resources and organisations I’ve found useful along the way.

Disclaimer:
I’m not a doctor — just someone with a lot of medical letters on my file and a few too many hospital wristbands. Everything shared on this site comes from my personal experience living with complex chronic conditions. It’s not medical advice, and it shouldn’t replace professional guidance. Always speak to your healthcare team before making any treatment decisions (especially if it involves sparkles, spreadsheets, or ice cream therapy).