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Scrambler Therapy (Calmare) for CRPS

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I started scrambler therapy in 2022 and have shared my progress on some of the online CRPS community groups. The same questions tend to come up each time, so I’ve tried to answer them here. If I’ve missed something, please hit me up in the comments 🙂

Scrambler was rediscovering hope

At the time I was at the end of my rope having just finished another round of lignocaine infusions that had just stopped working. The pain specialist I was seeing decided that my pain was psychological when I declined to explore invasive surgical interventions.

I was in a really dark place. I had about six months of success with the lignocaine infusions. When the last round of treatment didn’t work, I felt broken. The feeling is impossible to describe to someone who doesn’t have chronic pain. To have felt relief, then to have it stop working and for the pain to take over your life again is soul destroying.

The one valid point made by Pain Specialist #3 was that I needed different support. And they were certainly not it. At this point, online information for CRPS treatments said pretty much the same things: medications, physio, nerve blocks, spinal stimulators and psychological support to help with acceptance. In fairness, it hasn’t evolved too much from there but it is getting better.

If you want current information and how useful the therapies are, the online support groups are the place to be. I was seeing more and more Americans talk about Calmare Therapy. So I started to poke around for more information and if it was available in Australia.

Decoding Calmare Therapy

As it turns out, the rest of the world calls Calmare “Scrambler Therapy”. Calmare is a term exclusively used in North America.

In 2022, there was very little information available online. Even clinics offering Scrambler didn’t go into much detail about the process, any side effects or the costs. Most of the information I found was from other CRPS Warriors through the private online groups.

What is scrambler therapy

Scrambler therapy, also known as Calmare therapy, is a non-invasive pain management (neuromodulation) technique to treat chronic pain conditions.

The goal of scrambler therapy is to retrain the brain’s perception of pain. It works by sending non-painful electrical signals through electrodes placed on the skin, which are intended to “scramble” or disrupt the transmission of pain signals to the brain.

Scrambler therapy is typically administered over a series of sessions, with the frequency and duration of treatment tailored to each individual’s needs.

It is shown to provide relief from chronic pain conditions, including neuropathic pain, CRPS (Complex Regional Pain Syndrome), chemotherapy-induced peripheral neuropathy, and failed back surgery syndrome, among others.

For me, scrambler therapy changed the entire story of my CRPS. I got my pain under control. I got my mobility back. I got quality of life back. I found hope again.

Who offers the treatment

There are very few licensed clinicians in Australia and globally. If it’s something you’re wanting to explore, hit up the online groups for the clinics currently offering it. 

I’m lucky that there is a private scrambler clinic run in Noosa by Dr Peter Georgius at Meglio Therapeutics. Peter and his team are amazing. They take an integrative approach to pain management, meaning its not just about the drugs and invasive procedures. The need to find better solutions is what led Peter to starting a scrambler clinic.

Deb is the nurse practitioner in charge of the Scrambler clinic and is an absolute angel.

The clinic is just behind the main strip at Noosa Junction and is wonderfully accessible. There is heap of food and accommodation options available that will suit most budgets.

I cannot recommend them highly enough. It is well worth the trip to Noosa (plus there are few places more beautiful and peaceful than the Sunny Coast).

What to expect

It’s not in a hospital. There are no drugs or anesthetic. It does not hurt.

Before you even book in your first block of treatment, Deb does an initial phone consult with you. There was a bit of preparation reading she asked me to do before I attended clinic. I still vividly remember my first phone call. I think Deb heard the desperation and apprehension in my voice. She was amazingly patient and took the time to answer all my questions (and I had dozens). It was an incredibly refreshing experience. I finished the call feeling heard and more importantly had hope again for the first time in a long time.

Meglio Therapeutics do the first block of treatment over two weeks (which is the recommended protocol). So Monday to Friday, break over the weekend. Then Monday to Friday.

Each session lasts about an hour, with 40 minutes receiving the actual treatment.

At the start of the session, Deb takes a baseline pain score and discusses the treatment approach for the session.

You get comfy on the recliner chair. Deb places the nodes on the agreed spots and turns on the scrambler machine. At first Deb drove the frequency and intensity of the impulses. They get turned up or down based on your feedback. By the second week, I was driving the machine’s intensity.

What does it feel like?

It feels a bit like a tens machine. However, scrambler is not tens. It’s a different treatment modality and frequency.

I’ve never found it painful. Sometimes, one or two of the leads have been a bit spicy. So they’ve been moved or the frequency has been turned down. The idea is to retrain your brain and recalibrated the pain signals, not inflict more pain. As Deb says, your brain needs to find it interesting. It doesn’t have to be full ball for that to happen.

After the session I tend to feel a bit dopey/sleepy and ravenous. There is something amazingly satisfying about eating after the session. And there is no shortage of yummy restaurants and cafes a stones throw from the clinic.

When do you notice a difference?

During my first week, I noticed a progressive change day to day. Mostly I just wanted to eat and sleep after my sessions. I noticed a dramatic improvement in my sleep quality after the first session. By the weekend, I felt like I was super charged. A girlfriend came up for a girls weekend and I managed to walk around all weekend without dying of pain. It was liberating.

By the end of the second week, my pain had come down significantly. The burning sensation was now very much in the background. When I first started the treatment I would have happily cut it off if it meant the burning and tingling would stop.

It is different for everyone. People who are more hands on with their treatment can find a more dramatic result. The theory behind this is that there is a higher neuro-feedback loop when you’re in control of your own treatment and the intensity of the frequency.

How long does it last?

I had about four months between my initial round and my first booster. My first booster was a five day block and my pain baseline came down another few points. During my first booster round, I remember being able to walk on sand for the first time in since my accident.

Between treatments two and three, I got COVID which destroyed my pain baseline completely. I started to get a spread up into my hip and was majorly freaking out that I would become wheelchair bound. Within one session, the spread was gone. The next four sessions focused on stablising my baseline again. Which it did.

Treatment blocks three and four was about three months because I thought I’d give Influenza A a spin. In case you were wondering, I do not recommend. Much like COVID it destroyed my pain baseline. Thankfully, scrambler reset my pain baseline within three booster sessions.

It’s been more than six months since my last scrambler booster. My body is telling me it’s ready for another booster. The tingling is getting stronger, my gait is shifting and I’m getting a bit more tentative with walking. But in that last 6+ months, I’ve moved house, started renovations, painting fences and planting gardens. Things that if you asked me in 2022, I would have flared up at the thought of doing.

Have I still had flare ups? Sure. Scrambler hasn’t been a cure for me. I have heard of some people have gone into remission. I have Type 2, I’m realistic about curative treatments. But it has reduced the severity and duration of the flare ups. I notice improvements after each booster round.

I still hold hope that I will be able to extend well past six months between treatments. The biggest thing I have learned on my journey with CRPS is that pain management is not just one thing. It’s a combination of diet, movement and your chosen treatments. Making a mental shift from finding the silver bullet that will eliminate my pain to what can be done to reduce pain has saved my sanity.

How much does it cost?

The most expensive part of it for me is the accommodation. Noosa is not the cheapest of places to stay. I would strongly recommend booking outside of peak season if possible. Deb has a fixed price agreement with Macquarie Lodge which is around the corner from the clinic. It’s a beautiful and peaceful, self contained apartment complex with on site management. Being able to self cater helps keeps the costs down as well. Off peak there are generally some great deals on Air BnB as well.

The Scrambler sessions were about $350 per session when I last went in late June 2023. Peter is also my treating pain specialist so I have my follow-up consults generally while I’m there (which is why I’m saying about because there’s other consult fees for me and I tend to pay it altogether). You do not have to be a pain patient to receive scrambler therapy, but you will need a referral for scrambler from your GP or specialist.

I’ve said it before, my health insurance sucks. It didn’t cover a cent. However, some people have been able to get part of their accommodation at least covered.

A friend of mine has had their sessions and some expenses covered through DVA. I’ve also been told that some interstate WorkCover agencies cover some costs as well. I would ask Deb as part of your initial phone consult, this seems to be a moving feast.

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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