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CRPS Resources

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CRPS can be an overwhelming diagnosis, and there’s still a lot of that is not known about why it develops in the first instance and what are the most effective treatments. Sadly a lot of doctors, specialists and allied health professionals know very little about its treatment and management.

I was first diagnosed in 2020 after complications with a broken ankle. It’s been a rollercoaster ride learning to live with chronic pain. I hope this section of No Spoons to Cook helps you better understand CRPS and connects you with groups, resources and ideas to help improve your quality of life.

The information on No Spoons to Cook is based on my personal research and experience with living with CRPS and chronic pain. It is not medical advice. I strongly recommend that you speak with your treating clinician before adopting any changes to your care plan.

What is CRPS?

Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy (RDS), was first described in the mid-16th Century. It is a chronic pain condition characterised by severe and prolonged pain, often affecting one limb, typically after an injury or trauma. CRPS is believed to result from malfunctioning or damage to the central or peripheral nervous system, leading to abnormal pain signaling and inflammation.

Symptoms of CRPS can vary but commonly include intense burning pain, swelling, changes in skin temperature or color, sensitivity to touch or cold, and abnormalities in nail or hair growth. The pain associated with CRPS is often disproportionate to the initial injury and may worsen over time.

I’m borrowing this from Burning Night’s because I think it’s a very important point:

Complex Regional Pain Syndrome is a physical condition, despite what you may hear from a medical professional. Some medical professionals believe that the condition is caused by previous psychological problems, but this is NOT the case. The condition can causes future psychological problems because of the constant amount of pain. Prior psychological or mental health issues don’t predetermine CRPS. CRPS is not in your mind. It is a real physical condition.

https://www.burningnightscrps.org/crps/crps-information/what-is-crps/

And I’m saying it again for the people at the back. CRPS is not in your mind. It is a real physical condition. Unfortunately there are some doctors (pain specialists included) that fundamentally do not understand this. My strong recommendation from personal experience, find another specialist. It is not in your head. Being gas lit by a doctor that believes it is, is never ok.

Managing CRPS

Currently there is no cure for CRPS. Although there are some extremely promising treatments emerging and some people have reported going into remission. There is hope.

  • Medications is where I think most people start. I was fortunate that my GP was on the ball and by the time I was diagnosed, we had exhausted all conventional pharmacological treatments. The first three pain specialists I saw had no other bright ideas and forced the traditional medications path despite the fact I was not tolerating the medications well. Some people have amazing results with medications. It is incredibly individual. For me, the side effects outweighed any pain relief benefits. I do recommend keeping a journal of what you’re taking and how it makes you feel. Pain brain and medication fog is real. Keeping records helped me have the conversations with my care team. I also strongly recommend doing your own research and write down your questions. It’s your body and you’re the one that has to deal with any side effects.
  • Supplements are also very individual. I have spoken with some CRPS Warriors that manage their pain purely with supplements and diet. Through a lot of trial and error, I’ve got a number of supplements that help reduce pain and inflammation. It is important to talk to your care team about what you are taking because some supplements can interact with medications.
  • Physiotherapy has its place. I think I saw 8 different physios with varying degrees of success. Staying as mobile as possible is important for a large number of reasons. But there is a balance. Finding a physio that understands CRPS and the limitations we experience will make the world of difference in your outcomes, pain levels and sanity. There is a significant difference with working with chronic conditions verse rehabbing an injury. Some physios are simply not skilled in managing chronic pain conditions. 
  • Hydrotherapy and I have a love hate relationship. I’ve heard a lot of people having amazing success and results with hydro. I believe consistency is key with any therapy. I find my allodynia determines how consistent I can be. I do find relief with high saturation of Epsom salts and heat.
  • Acupuncture has been amazing for me, although it can be painful. Again, finding a practitioner with experience with CRPS or Fibro I have found essential to consistent outcomes. While I’m not entirely sure it’s done a lot for my overall pain levels, it does help support my nervous system as a whole and takes pressure off other body systems. 
  • Ketogenic diet has been one of the cornerstones of my pain management plan since late 2020. Yes, I benefited from the weight loss aspect of it but there are growing studies into the positive impacts high protein and fat diets have on inflammation and managing allodynia. No Spoons to Cook came about because we feel strongly about the positive impacts food can have on our pain, overall energy levels and proactively manage gut health which is pounded by the medications we take. It is also one thing that most pain specialists don’t talk about at all. Meglio Therapeutics recommend diet change as part of your overall care plan. I was literally on my fourth pain specialist before anyone mentioned diet as a treatment option. There are pain programs emerging that are very forward about the positive impacts diet has on managing pain. 
  • Scrambler (Calmare) Therapy was a turning point for me in actually getting my pain under control. It’s a drug free, non-invasive treatment that retrains the way your brain registers pain signals. I’ve written about my experience here
  • Oska Pulse has been a recent addition to my treatment protocols. It’s another drug free, device based treatment that uses PEMF frequencies to assist with pain and inflammation. I’ve written more about my experience and the therapy here. Oska Pulse Australia has also given us a discount code! 

Online communities and resources

  • Complex Regional Pain Syndrome (CRPS) NZ & Aus. Family & Friends is a private Facebook group with about 3,000 Aussie and Kiwi CRPS Warriors and their support network. It’s one of my favourite support groups and it is well moderated. It’s an active group with a great sense of humour and selflessly share experiences with different treatments, aides and helps you feel that little bit less alone. Their files section has some handy resources to take to new treating clinicians, dentists and family.
  • CRPS Painfully funny is another private Facebook group moderated by the wonderful Dawn Hall. It’s a global group with a wicked (sometimes very dark and adult) sense of humour. People do ask questions and share advice. But for the most part its a fabulous distraction.
  • Complex Regional Pain Syndrome (CRPS) Help & Support Group is a private Facebook group with just over 4,000 global members. Being a global group, people share a lot about different treatment options, ask a tonne of questions and it’s generally a supportive community. It is very North America focused but I found Scrambler Therapy (Calmare) from people sharing on this group.
  • The Purple Bucket Foundation is an Australian Charity focused on raising awareness and support for CRPS. Their website has some more Aussie-centric resources and some funky merch which helps fund their advocacy and awareness work.
    • CRPS Awareness – The Purple Bucket Foundation Inc. shares current treatment information, funny memes and helps connect the Australian CRPS community in a positive way.
    • Their website has a range of handy resources that explain CRPS, different treatment options available in Australia and clinician resources.
  • Burning Nights is a UK based charity started by a CRPS Warrior around 2014. While a lot of their support information is UK based, they have some wonderful resources and information to help understand CRPS, navigated treatment and raise awareness about the condition.
Disclaimer: No Spoons to Cook is based on our own experience and research, and what we know works best for us. It is not medical advice. Our recipes focus on low inflammatory ingredients, whole foods and are founded in ketogenic and low carb ways of eating. We encourage spoonies to stay curious, ask questions, do your own research, listen to your body and to work with a Registered Dietitian or Medical Professional when appropriate to tailor your nutritional needs to support your care plan and goals.

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