Help Laura conquer CRPS

I’m Laura, a mother of three beautiful young children (Eliza, Leo and Emilia) but I also have a very rare neurological disorder. It began following a nerve injury sustained during orthopaedic surgery two months ago. My whole story is long and complex, in time it will be told. The photo above was taken just before the nightmare began 2.5 years ago.

The neurological disorder is called Complex Regional Pain Syndrome (CRPS). The literature will tell you there is NO CURE, it is a progressive condition and that at best you can hope to manage some of the pain with a battery of medication. What then happens to someone who cannot take the drugs that statistically have little efficacy anyway. My DNA dictates that I cannot be given many types of medicines, we had Pharmacogenetics testing done, but confirmation that I had previously, and would indeed suffer a range of severe side effects, some life threatening.

CRPS is classed as the most painful chronic pain condition that is known. It reaches 42 out of 50 on the McGill Pain Scale, higher than non-terminal cancer, childbirth and amputation of a finger without anaesthesia… and the pain is constant. It feels like there are thousands of tiny daggers in my hand, I have constant electrical shocks, muscle cramping, deep bone pain, a constant burning and stinging sensation. It NEVER relents. Despite my best efforts to avoid this, in 8 weeks since surgery my joints are seizing up as it progresses, my shoulder has frozen, my hand cannot tolerate cold or hot, water makes my fingers swell to twice their size. I currently have no use of my hand and arm, it is a dead weight I lug around but a weight firing constant pain. This is my hand after 10 seconds in water:

For those wanting to understand CRPS in more detail, a longer explanation is provided below but the harsh reality is that my central and automatic nervous systems are malfunctioning to a significant degree. Rectifying that is uncharted territory for many medical professionals who do not understand the causation and dictates the line that there is ‘no cure’. What I now know from my own extensive research is that these malfunctions must be addressed through a range of modalities (not offered by the NHS). In addition to this highly specialised aggressive physical therapy 2-3 times per week is essential (which I have also been told will have to be funded privately given the complexity of the conditions I am faced with).

Of the upmost importance is avoiding further exploratory surgeries to determine the extent of nerve damage, the chances are high that this would even further exacerbate the CRPS. The therapies below would all work collectively with the aim to rectify the imbalances in the nervous systems to hopefully put CRPS into remission but also giving my body the best chance to heal the nerves without further surgical intervention (which would carry significant risks).

I have suffered a range of misdiagnoses over two years, let down beyond recognition by not one but multiple health professionals, this has led to this point. Thinking positive and trusting my body to recover in time is not the solution, CRPS is a progressive condition that causes severe disability very quickly. The few stories I can find of people who have defeated this disease, have used an aggressive regime and an extensive amount of alternative health modalities in conjunction, it must be done early to be effective. Those very people have spent thousands upon thousands in the process. As a family we have suffered financially on an immeasurable scale for two years trying to rectify the damage of medical gaslighting.

There is a clinic in the US called The Spero Clinic which takes a similar intensive approach to addressing the nervous system imbalance but it requires a 3 month impatient stay and the costs for this are much, much higher. The hope is that I can mirror their modalities, three months away from my family seems an impossible option at this stage.

At the heart of this story are three tiny human beings, terrified at what this disease is doing to me, they need their mother back, able to function and do everything they would expect. The little and basic things you take for granted have become impossibly hard now, the severe sleep loss on top of the pain has an overbearing effect, the fact I can no longer drive, trying to be a ‘mum’ and all that comes with it is incredibly hard with one hand (in use) alone. I miss the ‘old pain free’ me more than I can possibly quantify and I will do everything in my power and stop at nothing to regain my health and the strength I once I had. I’m frightened, terrified in fact, but I will not let fear stop me from fighting.

Although it is not in my nature or easy for me to do so, I am asking for your help to get us there. Any gesture, no matter how small will make a huge difference. The treatments outlined below are the product of my own endless research backed by clinical evidence and CRPS success case studies.

This would provide roughly three months of treatment (likely longer subject to how they all align) at which point an assessment will be made on where I am at in terms of further help required.

Calmare scrambler therapy - offered in a few locations around the world, it shows a lot of promise for the pain of CRPS. I would travel to Ireland at the end of April to be treated over a 2 week period.

Hyperbaric oxygen

Acupuncture

Limbic reflexology

Craniosacral therapy

Hydrotherapy

Chiropractic/osteopathy

Neurofeedback

Biofeedback

Havening therapy

Reiki

CRPS physical therapy

Nerve injury physical therapy

Low level laser therapy

Homeopathy

Bowen technique

Scalar wave therapy

Vagus nerve stimulation

Infrared light therapy

NAET treatment

Any donations towards my target will enable me to begin my journey. Please, please do share this amongst your networks, if only to raise awareness of a debilitating condition that robs many of ‘living’ their lives. Many cursed with this diagnosis, lose hope. I will not accept this is my future but I need funds to fight this head on, and when I defeat this, I will fight for those that cannot.

If you are interested to learn more about this disease and how it affects people, there is a Netflix documentary called 'Take Care of Maya'. It is a heartbreaking account that I encourage everyone to watch to educate people on this cruel condition.

Documentary link

What is CRPS:

We have many nervous systems in the body. The central nervous system controls the body and its functions. The motor nervous system controls movements. The sensory nervous system controls things I see, smell, taste, and feel. So what does the sympathetic nervous system do? It is the system that activates when you are scared or stressed. For instance, when you are walking in the dark and you think someone is following you and you get worried or scared the sympathetic nervous system turns on. It responds by diverting blood flow from the limbs to send the blood to the heart, lungs, and brain so you can think fast, move fast, get to safety. When the crisis is over it shuts off until it is needed again. With CRPS the damaged sympathetic nerve and nervous system remains on. It does NOT shut off, firing pain around the clock along with many other disabling symptoms. My parasympathetic (rest and relax) nervous system is not activating as it should meaning my body remains in a heightened state. All the treatments I would seek look to gently aid this component and address the imbalance.

Thank you from the bottom of our hearts,

Laura & family