Help me overcome CRPS
Donation protected
Hello, my name is Annette and I'm sharing my story because not only am I asking for support in treatment, but also to raise awareness for CRPS.
In January this year I broke my tibia and completely shattered my fibula needing a couple of surgeries, a couple of long metal rods and several screws to keep it all in place. That all went well, which was surprising even to my surgeon. After spending two weeks in hospital I was then bedridden for just over a month at home.
A couple of months later, when my moonboot was removed, my doctor realised there was something very wrong with my foot. This is when I was diagnosed with Complex Regional Pain Syndrome, or to make it simple, CRPS. He told me it was one of the worst cases he had ever seen.
For anyone who is aware of what this is, then you are also aware of how debilitating this can be. Although I considered myself lucky to be diagnosed early, the last 6 months have been extremely tough.
For those of you who aren’t aware, CRPS in short, is a malfunction of the nervous system. Meaning my foot is awfully sensitive to basically everything. This means the nerves in my foot send a bunch of messages to my brain, which then makes my brain freak out and send a tonne of pain down to my foot. Along with this sharp, burning pain, the foot is constantly stiff, swells to a balloon and changes colour. This inevitably affects me daily. Walking is tough, sleeping is painful, I haven’t been able to run, jump, dance, go for long walks, be out for long periods, work full time, showering can be painful…just all the normal things you may forget that are so important in every day life.
If you do some research, it will tell you that “CRPS is either localised or widespread excruciating, debilitating pain coursing through your body. Every moment. Of every day. The pain you experience with CRPS / RSD is unimaginable. This condition is considered the most painful condition that exists on the planet today. Worse than childbirth, worse than amputating a limb, and although the pain goes up and down in intensity, it’s always there in some form.”
I remember many nights laying in bed thinking to myself I would rather cut the foot off than deal with the pain.
The scary possibility of this condition is that it can spread throughout your body. Which I have spent many sleepless nights thinking about.
In the last month, I have managed to get my pain under somewhat control, by medication, meditation and lots of hydro and physiotherapy.
The only problem about taking such strong medications for pain is that it makes me super drowsy and tired every day, and then the minute I have a "bad" day, it feels like all the medication, meditation, physio and hydro were for nothing.
Between the doctors’ appointments, physio, hydro and psych appointments, my life feels like it has been on hold. Although my doctors are happy with the progress I am making, they told me I will need another 12 months before "hopefully" being put in to remission (they say remission because there is no cure). This is part of the frustration, I don’t know when or if I will get better.
For the last 6 months, I have desperately been trying to find something/anything that will aid in getting me better. This is when I started talking to other CRPS sufferes online.
A girl who has been living with this disease for 6 years recommended I try this exciting treatment up in the Gold Coast, which has worked wonders for her. This treatment has also helped others with my condition along with other sufferers of chronic pain. The clinic is called NeuoPhysics Therapy Institute. Although I don’t want to have grand expectations, it sounds promising. I am so excited to get started I cannot put it in to words (well maybe just 500 or so).
Treatment at this clinic is $6,600 which covers me for 4 days of intensive therapy, and a week to use the clinic whilst being monitored by the therapists. If I need extra work, that will be at an extra cost which I guess I will find out when I’m there. Right now, I’m planning to stay 2 weeks. As I have already taken months off work and have eased back into part time work, your help will go a long way!
My goal here on Gofundme is to ask for your help to reach $5,000 which will go towards the treatment, accommodation and flights which are both separate from the treatment. As I want to get started as soon as possible, I am hoping to book in for the last two weeks of September.
I will post progression photos and let you all know how treatment is going along the way.
Any help is appreciated and I will be forever grateful of your generosity.
In January this year I broke my tibia and completely shattered my fibula needing a couple of surgeries, a couple of long metal rods and several screws to keep it all in place. That all went well, which was surprising even to my surgeon. After spending two weeks in hospital I was then bedridden for just over a month at home.
A couple of months later, when my moonboot was removed, my doctor realised there was something very wrong with my foot. This is when I was diagnosed with Complex Regional Pain Syndrome, or to make it simple, CRPS. He told me it was one of the worst cases he had ever seen.
For anyone who is aware of what this is, then you are also aware of how debilitating this can be. Although I considered myself lucky to be diagnosed early, the last 6 months have been extremely tough.
For those of you who aren’t aware, CRPS in short, is a malfunction of the nervous system. Meaning my foot is awfully sensitive to basically everything. This means the nerves in my foot send a bunch of messages to my brain, which then makes my brain freak out and send a tonne of pain down to my foot. Along with this sharp, burning pain, the foot is constantly stiff, swells to a balloon and changes colour. This inevitably affects me daily. Walking is tough, sleeping is painful, I haven’t been able to run, jump, dance, go for long walks, be out for long periods, work full time, showering can be painful…just all the normal things you may forget that are so important in every day life.
If you do some research, it will tell you that “CRPS is either localised or widespread excruciating, debilitating pain coursing through your body. Every moment. Of every day. The pain you experience with CRPS / RSD is unimaginable. This condition is considered the most painful condition that exists on the planet today. Worse than childbirth, worse than amputating a limb, and although the pain goes up and down in intensity, it’s always there in some form.”
I remember many nights laying in bed thinking to myself I would rather cut the foot off than deal with the pain.
The scary possibility of this condition is that it can spread throughout your body. Which I have spent many sleepless nights thinking about.
In the last month, I have managed to get my pain under somewhat control, by medication, meditation and lots of hydro and physiotherapy.
The only problem about taking such strong medications for pain is that it makes me super drowsy and tired every day, and then the minute I have a "bad" day, it feels like all the medication, meditation, physio and hydro were for nothing.
Between the doctors’ appointments, physio, hydro and psych appointments, my life feels like it has been on hold. Although my doctors are happy with the progress I am making, they told me I will need another 12 months before "hopefully" being put in to remission (they say remission because there is no cure). This is part of the frustration, I don’t know when or if I will get better.
For the last 6 months, I have desperately been trying to find something/anything that will aid in getting me better. This is when I started talking to other CRPS sufferes online.
A girl who has been living with this disease for 6 years recommended I try this exciting treatment up in the Gold Coast, which has worked wonders for her. This treatment has also helped others with my condition along with other sufferers of chronic pain. The clinic is called NeuoPhysics Therapy Institute. Although I don’t want to have grand expectations, it sounds promising. I am so excited to get started I cannot put it in to words (well maybe just 500 or so).
Treatment at this clinic is $6,600 which covers me for 4 days of intensive therapy, and a week to use the clinic whilst being monitored by the therapists. If I need extra work, that will be at an extra cost which I guess I will find out when I’m there. Right now, I’m planning to stay 2 weeks. As I have already taken months off work and have eased back into part time work, your help will go a long way!
My goal here on Gofundme is to ask for your help to reach $5,000 which will go towards the treatment, accommodation and flights which are both separate from the treatment. As I want to get started as soon as possible, I am hoping to book in for the last two weeks of September.
I will post progression photos and let you all know how treatment is going along the way.
Any help is appreciated and I will be forever grateful of your generosity.
Organizer
Annette CP
Organizer
Northcote VIC
