Help Alana fight CRPS Medical Fund
Donation protected
Alana Jordan – fun, intelligent, full of surprises, (never ever a dull moment!), just the life of the party! That’s how everyone knows Alana, and that’s how everyone wants her to be …. and to this day she still fights to be her true self despite her condition and struggles in recent years. However, despite her determination, willpower, and lively spirit to keep everything in her life operating as “normal” as possible, with minimal impact to those around her – everything has its limits of sustainability.
Alana suffers from CRPS (Complex Regional Pain Syndrome), a rare, incurable, and chronic condition whose exact cause isn’t well understood by the medical community. Symptoms include severe, burning pain, abnormal inflammation, nerve dysfunction and changes in skin conditions (just to name a few) - affecting all parts of her body, unexpectedly and for no real reason.
As one of her closest friends, watching her go through this every day is heartbreaking. Each day she wakes up with yet another painful symptom leaving her in tears wondering how she will get through it all – and that’s just the start to her day. Not being able to do anything to help apart from trying to make her smile and distract her from any pain she is experiencing is disheartening. The unpredictability of this condition prohibits Alana from committing to anything in her life, having to rely on the people around her to help complete even just the simplest of tasks.
Those who know Alana, know that she is a very intelligent and independent woman. To see Alana’s body, fail her right in-front of my eyes and her independence striped from her, while mentally, (when not dosed up on medications to settle the pain), still active as normal, is quite upsetting. You can see and feel her frustration and pain as she constantly attempts to put on this “mask” to get through the day, yet suffers in silence so as not to make a fuss, hoping (praying) it will all go away.
Much to her reluctance I have asked Alana to tell her story and reach out for help as she is now struggling to keep up with her ever-increasing medical bills to continue her treatments (averaging between $1K - $2K per month). Unfortunately, as this condition is still not well understood by medical practitioners, Alana has been put through a number of costly experimental treatments and medications to try and contain and manage her pain so that she can hopefully lead a normal (pain free) life.
In addition, it would also be awesome to give Alana the opportunity to travel to the United States where she could see the leading medical clinic’s focusing on CRPS, and hopefully get the chance to try some of the experimental treatments currently not available in Australia, that are known to possibly help her condition. Total expenses on taking this on average approximately $50K, but unfortunately this is something Alana cannot afford right now, as she has been unable to work consistently for quite a few months due to the escalating nature of her condition.
Given her extensive journey to date battling this illness, it would be extremely shattering to have to stop these treatments simply because she can no longer afford them, let alone the downstream repercussions on her body and wellbeing. Despite her endless efforts, Alana has not been able to receive any help from the government to continue with her medical plan/treatments or any assistance for managing her wellbeing – due to its rare and unknown status in Australia.
Hopefully you’ll find it in your heart to help Alana with her medical expenses, so she can continue with her treatments to help manage the pain and hopefully one day find that miracle cure.
Every little bit counts, so let’s all band together to help bring the Alana we know back!
Below is her story:
Everyday I fight to survive! I have an incurable illness that is nicknamed “Suicide Disease” as when it is bad it can be difficult to find a reason to continue fighting. It is known as Complex Regional Pain Syndrome (shortened to CRPS and previously called Reflex Sympathetic Dystrophy). I have just recently celebrated a 20 year milestone battling the illness and after 20 years it is finally getting the better of me. I have exhausted my hard earned and saved money, trying to get better. I have tried every treatment I can get access to and have researched the illness non stop. I am in forums with people suffering around the world and I meet people in hospital that are also suffering and struggling as there is so little knowledge and recognition of what this illness can do to your body. I have been fortunate to find good medical practitioners along the way but I have paid a hefty price and now I am having to choose what I give up as I cannot sustain the costs. I have little assets left, I may not show this to the outside world but a car and some clothes and furniture doesn’t leave for much, particularly when you can’t even afford to service your car.
I have always tried to stay positive and tried to manage on my own but my inner circle knows that this illness is finally beating me. I can no longer hide the tears or desperation as I try to work out how to re-define my life to manage an illness that is so unpredictable. I have the support of a great friend who is trying to work with me to setup a business, so that I have the funds to manage my illness and continue getting treatment and have some quality of life. But we know it is going to be a long process as it has to be setup so I can have the time I need to keep fighting. I feel like I am letting everyone down all the time and it breaks my heart at times as I know mentally I am capable but my body keeps falling apart. Asking for help has just about killed me, I was always mature and really became an adult early in life, now I feel like a child who needs to be taken care of and although my dignity has been shredded from me before, I cannot explain how hard it is to ask for help now.
Unfortunately I now feel beaten and desperate. Desperate to find the money to keep going, the strength to keep fighting and the resources to assist me to put a new life plan together that will enable me to have a quality of life. I feel beaten by the Australian medical and welfare system. The support is limited and it is nearly impossible to find a job that will allow me to take a month off every two months for treatment and go to medical appointments in between whilst managing flares. You would think straight away that I could qualify for Disability but that is not the case, as apparently “I could still get better”. I do not disagree that my mind is still active and mentally I can function very well on good days and even when heavily medicated, I am still powering at the equivalent of a normal person mentally but physically my body is failing me. I need more rest, time to focus on my health and it is just about impossible to juggle holding down a job at the same time. The stress and anxiety I have felt thinking people will not believe that I am capable if my illness ever came out has nearly killed me. So the vicious circle always continues, get a job, work extra hard, take some time off for treatment but make sure I have pre-done all my work and come back working extra hard so that I am not seen as being too ‘sickly’ to keep around. This then leads to less sleep, more pain flares, more stress followed by anxiety and the illness ramps up again, only to repeat.
I understand that the Government is struggling to fund the Disability scheme but there are plenty of people receiving funding who are not trying to also help themselves to get off it in the future. I have fought hard but if you are seen to help yourself to much you do not qualify…all I wanted was help to get through the next few years so that I can once again become self-sufficient.
Background:
I was 16 years old, studying Year 12 and working part time at McDonalds, I thought that anything and everything was possible in life and I loved working hard. I wanted to serve in the Australian Defense Force or as a Police Officer and loved playing sport and socialising with friends. On the 16th of March 1996 whilst I was at work I hurt myself…I didn’t know at the time it would be a life long sentence of pain. I had been lifting heavy boxes up stairs and went to pick up an ice box that weighed approx.. 10 kg and had to be lifted by turning your wrist inwards and up against the body. I felt a pop sensation in my neck and instant pain. The following day it was worse and here begins my story. I injured my left hand, wrist, arm, shoulder and neck when I was 16 whilst working at McDonald’s in 1996. I underwent extensive testing and various treatments. I was subsequently diagnosed with CRPS/RSD. I always referred to the illness as Reflex Sympathetic Dystrophy as that was the name that the Dr’s would use. At the time the illness wasn’t very well known and to be honest most Dr’s just gave the advice to never let anyone operate on my back and that maybe I would be lucky with time due to my age that I would recover. The first 7 years were hell and I am not sure how I managed to go on each day, I hid it well from friends and family as I just wanted to be accepted as a normal young woman. It did change my work goals and plans, no longer could I exercise or use my left arm and I had to re-focus on academia and minimise physical activity in order to survive. I would have bouts of being bedridden in pain but I somehow kept pushing through and accepted that I could not change what had happened and hope I would recover as the Dr’s assured me I would. In 2003/2004 the injury settled to a manageable state where I would only have intermittent flare ups of pain, spasms and migraines. I was never well, I would always be suffering from some illness or issue that never followed the usual patterns to resolve but I would joke and just say I was unique and only I could get that or this illness. I studied hard and worked hard to create a career that I loved. In 2012 at the age of 32 I hurt my neck in the same spot whilst trying to brush my hair on a boat in Croatia. I heard a popping/snapping sound and felt blinding pain. As I was overseas it was difficult to find appropriate medical treatment however it appeared to resolve with Analgesics and swimming during the course of the holiday. On returning from the holiday I started experiencing chest pain and underwent extensive testing. I was in and out of hospital for months, I would mention the Reflex Sympathetic Dystrophy and the injury but the Doctors never followed up or thought about the link. In February 2013 I had a needle placed in my left wrist for a CT contrast scan and felt instant pain, I subsequently vomited and then noted that I started having pain in my feet, legs, hands and arms and the pain progressed rapidly over the coming months. In May 2013 I was referred to Dr Tim McCarthy after I hit rock bottom, I was clawing, muscle spasms, nerve pain, in the foetal position most days and experiencing intense pain. Dr Tim McCarthy worked tirelessly to provide pain control and assist me with rehabilitation. Dr Tim McCarthy had said to me just prior to going on leave and passing away that he believed he would have me in remission within 1-2 years.
Since then I have tried various treatments and medications but none with the success that I had with Tim McCarthy and at times I have retreated back so far I have been stuck in bed for weeks. I am trialling every combination of medications to treat NMDA and Glial Cell activation. These medications are costly. My monthly medications cost approx.. $600-700 AUD, then add Specialist appointments bi-monthly of $700, psychologist bi-monthly of $400, Physiotherapy monthly of $440, and then all the additional investigations to rule out other issues when my illness is mimicking other diseases approx.. $100-$500 per month and costs to get to/from appointments and it is easy to spend $3000 AUD per month. So far I have only been able to reduce the costs slightly by hitting the medicare safety net for some appointments and reduction in some of the medicine costs but that still leaves me between $1000-$2000 per month just on medical expenses. I have self-funded this treatment to date but cannot afford to continue and so now I face the prospect of my health deteriorating as I cannot afford to go on.
I am now asking for help, I know that there are many people suffering and also need help with this illness but until I can manage my own health I cannot begin to start advocating for others, which is my next goal. If I told you how I have been treated by health professionals and the stories of others with this illness you would be shocked. Sometimes fellow suffers discuss how we would be treated better as prisoners. We are seen as junkies, fakers, whingers, generally too complex and just too hard! What does that mean? Doctors will not help at times even when the issue you are trying to treat isn’t related to the illness. We know not to bother going to Emergency Departments as they do not have the training to ensure our bodies are treated with respect when we are in a flare….just someone touching as can be like a bullet to the body…so imagine having someone roughly stick a cannula into your arm. The beds are not made to support our bodies and at the end of the day Emergency is for acute not chronic patients….so we suffer at home crying ourselves through the pain praying we will come out of the flare alive.
General Issues & Complications Ongoing:
· Freezing cold. Limbs are ice cold and pain flares the colder the limbs get. It can be hot and I still feel cold, other times I feel like I am having a temperature and my head feels hot.
· Sweating on back of neck
· Nerve through left neck, shoulder and shoulder blade feels like it is being pinched, twitching or tingling but in a painful sense.
· Headaches/Migraines - Horrible headaches above left eye. My migraines recently progressed to become Hemiplegic, this is where you feel paralysed down one side of your body and struggle to talk, it is like having a stroke…the experience is terrifying.
· Tremors
· Muscle cramps/spasms/twitching
· Issues moving my legs or arms sometimes
· Muscles aches, bones ache like they are broken or feels like I have shin splints.
· Electric pulses running through my body. Feels like my body is all wound up & can't relax even as I lie in bed. I would liken the feeling to all the cells in my body getting angry and buzzing around. Pain usually kicks in when the cells get very angry.
· Burning feeling in a limb...like its deep inside the limb. Mostly it feels like a cold burn but sometimes it’s a hot burn and sometimes like a limb is dead.
· Stabbing pains in body
· Sensitivity to noise, light, clothing – intermittent
· Wake up and feel like back is twisted
· Excessive thirst
· Shortness of breath
· Constipation
· Diarrhoea
· Reflux
· Bladder issues – frequent urination, do not urinate or urgent urination required (like I will wet myself)
· Waking constantly in sleep, feel need to move body, toss and turn all night.
· Blurry vision
· Bloated stomach
· For years I sweated excessively and now I rarely sweat. Note: Since 1996 until 2013 I sweated profusely full body.
· Skin infections
· Anal fissures
· Haemorrhoids
· Gynaecological issues – completed checks with Gynaecologist but no clinical explanation.
· Gastroenterological issues.
· Nails peel off and split and other times grow quickly. Mostly they break and peel these days.
· Head hair growth slowed in 2012. In 2013 I lost a lot of hair on the left side of my head whilst the right side continued to grow. Some regrowth of lost hair in 2014 however the left side of my head only grows very slowly (i.e. less than 1 cm over a few months). The right side of my head the hair grows normally. Noticed loss of hair growth on legs, arms, feet, etc.
· Vertigo
· Light-headedness – see floating spots/stars
· Painful teeth
· Crackling in left ear like I cannot equalise pressure or there is an infection.
· No appetite - intermittent
· Body swelling for no reason – increase in pain
· Can tell when the weather is going to change as my pain tends to flare
· Unusual sores and rashes
· Irritability when tired or in pain
· Anxiety increases when I have not slept or the pain is bad
·Joints pop & ache. Left side of face always feels heavier & in the past has seemed lop-sided.
· Word retrieval problems or stumble over words when pain is bad or I am tired.
· Wake up & my hands, arms, feet and legs are numb but painful or I can’t move them freely as they feel heavy & stiff.
· Left arm feels like someone is taking to it with a baseball bat and hitting repeatedly in the upper limb. This has unfortunately spread to other parts of my body.
Alana suffers from CRPS (Complex Regional Pain Syndrome), a rare, incurable, and chronic condition whose exact cause isn’t well understood by the medical community. Symptoms include severe, burning pain, abnormal inflammation, nerve dysfunction and changes in skin conditions (just to name a few) - affecting all parts of her body, unexpectedly and for no real reason.
As one of her closest friends, watching her go through this every day is heartbreaking. Each day she wakes up with yet another painful symptom leaving her in tears wondering how she will get through it all – and that’s just the start to her day. Not being able to do anything to help apart from trying to make her smile and distract her from any pain she is experiencing is disheartening. The unpredictability of this condition prohibits Alana from committing to anything in her life, having to rely on the people around her to help complete even just the simplest of tasks.
Those who know Alana, know that she is a very intelligent and independent woman. To see Alana’s body, fail her right in-front of my eyes and her independence striped from her, while mentally, (when not dosed up on medications to settle the pain), still active as normal, is quite upsetting. You can see and feel her frustration and pain as she constantly attempts to put on this “mask” to get through the day, yet suffers in silence so as not to make a fuss, hoping (praying) it will all go away.
Much to her reluctance I have asked Alana to tell her story and reach out for help as she is now struggling to keep up with her ever-increasing medical bills to continue her treatments (averaging between $1K - $2K per month). Unfortunately, as this condition is still not well understood by medical practitioners, Alana has been put through a number of costly experimental treatments and medications to try and contain and manage her pain so that she can hopefully lead a normal (pain free) life.
In addition, it would also be awesome to give Alana the opportunity to travel to the United States where she could see the leading medical clinic’s focusing on CRPS, and hopefully get the chance to try some of the experimental treatments currently not available in Australia, that are known to possibly help her condition. Total expenses on taking this on average approximately $50K, but unfortunately this is something Alana cannot afford right now, as she has been unable to work consistently for quite a few months due to the escalating nature of her condition.
Given her extensive journey to date battling this illness, it would be extremely shattering to have to stop these treatments simply because she can no longer afford them, let alone the downstream repercussions on her body and wellbeing. Despite her endless efforts, Alana has not been able to receive any help from the government to continue with her medical plan/treatments or any assistance for managing her wellbeing – due to its rare and unknown status in Australia.
Hopefully you’ll find it in your heart to help Alana with her medical expenses, so she can continue with her treatments to help manage the pain and hopefully one day find that miracle cure.
Every little bit counts, so let’s all band together to help bring the Alana we know back!
Below is her story:
Everyday I fight to survive! I have an incurable illness that is nicknamed “Suicide Disease” as when it is bad it can be difficult to find a reason to continue fighting. It is known as Complex Regional Pain Syndrome (shortened to CRPS and previously called Reflex Sympathetic Dystrophy). I have just recently celebrated a 20 year milestone battling the illness and after 20 years it is finally getting the better of me. I have exhausted my hard earned and saved money, trying to get better. I have tried every treatment I can get access to and have researched the illness non stop. I am in forums with people suffering around the world and I meet people in hospital that are also suffering and struggling as there is so little knowledge and recognition of what this illness can do to your body. I have been fortunate to find good medical practitioners along the way but I have paid a hefty price and now I am having to choose what I give up as I cannot sustain the costs. I have little assets left, I may not show this to the outside world but a car and some clothes and furniture doesn’t leave for much, particularly when you can’t even afford to service your car.
I have always tried to stay positive and tried to manage on my own but my inner circle knows that this illness is finally beating me. I can no longer hide the tears or desperation as I try to work out how to re-define my life to manage an illness that is so unpredictable. I have the support of a great friend who is trying to work with me to setup a business, so that I have the funds to manage my illness and continue getting treatment and have some quality of life. But we know it is going to be a long process as it has to be setup so I can have the time I need to keep fighting. I feel like I am letting everyone down all the time and it breaks my heart at times as I know mentally I am capable but my body keeps falling apart. Asking for help has just about killed me, I was always mature and really became an adult early in life, now I feel like a child who needs to be taken care of and although my dignity has been shredded from me before, I cannot explain how hard it is to ask for help now.
Unfortunately I now feel beaten and desperate. Desperate to find the money to keep going, the strength to keep fighting and the resources to assist me to put a new life plan together that will enable me to have a quality of life. I feel beaten by the Australian medical and welfare system. The support is limited and it is nearly impossible to find a job that will allow me to take a month off every two months for treatment and go to medical appointments in between whilst managing flares. You would think straight away that I could qualify for Disability but that is not the case, as apparently “I could still get better”. I do not disagree that my mind is still active and mentally I can function very well on good days and even when heavily medicated, I am still powering at the equivalent of a normal person mentally but physically my body is failing me. I need more rest, time to focus on my health and it is just about impossible to juggle holding down a job at the same time. The stress and anxiety I have felt thinking people will not believe that I am capable if my illness ever came out has nearly killed me. So the vicious circle always continues, get a job, work extra hard, take some time off for treatment but make sure I have pre-done all my work and come back working extra hard so that I am not seen as being too ‘sickly’ to keep around. This then leads to less sleep, more pain flares, more stress followed by anxiety and the illness ramps up again, only to repeat.
I understand that the Government is struggling to fund the Disability scheme but there are plenty of people receiving funding who are not trying to also help themselves to get off it in the future. I have fought hard but if you are seen to help yourself to much you do not qualify…all I wanted was help to get through the next few years so that I can once again become self-sufficient.
Background:
I was 16 years old, studying Year 12 and working part time at McDonalds, I thought that anything and everything was possible in life and I loved working hard. I wanted to serve in the Australian Defense Force or as a Police Officer and loved playing sport and socialising with friends. On the 16th of March 1996 whilst I was at work I hurt myself…I didn’t know at the time it would be a life long sentence of pain. I had been lifting heavy boxes up stairs and went to pick up an ice box that weighed approx.. 10 kg and had to be lifted by turning your wrist inwards and up against the body. I felt a pop sensation in my neck and instant pain. The following day it was worse and here begins my story. I injured my left hand, wrist, arm, shoulder and neck when I was 16 whilst working at McDonald’s in 1996. I underwent extensive testing and various treatments. I was subsequently diagnosed with CRPS/RSD. I always referred to the illness as Reflex Sympathetic Dystrophy as that was the name that the Dr’s would use. At the time the illness wasn’t very well known and to be honest most Dr’s just gave the advice to never let anyone operate on my back and that maybe I would be lucky with time due to my age that I would recover. The first 7 years were hell and I am not sure how I managed to go on each day, I hid it well from friends and family as I just wanted to be accepted as a normal young woman. It did change my work goals and plans, no longer could I exercise or use my left arm and I had to re-focus on academia and minimise physical activity in order to survive. I would have bouts of being bedridden in pain but I somehow kept pushing through and accepted that I could not change what had happened and hope I would recover as the Dr’s assured me I would. In 2003/2004 the injury settled to a manageable state where I would only have intermittent flare ups of pain, spasms and migraines. I was never well, I would always be suffering from some illness or issue that never followed the usual patterns to resolve but I would joke and just say I was unique and only I could get that or this illness. I studied hard and worked hard to create a career that I loved. In 2012 at the age of 32 I hurt my neck in the same spot whilst trying to brush my hair on a boat in Croatia. I heard a popping/snapping sound and felt blinding pain. As I was overseas it was difficult to find appropriate medical treatment however it appeared to resolve with Analgesics and swimming during the course of the holiday. On returning from the holiday I started experiencing chest pain and underwent extensive testing. I was in and out of hospital for months, I would mention the Reflex Sympathetic Dystrophy and the injury but the Doctors never followed up or thought about the link. In February 2013 I had a needle placed in my left wrist for a CT contrast scan and felt instant pain, I subsequently vomited and then noted that I started having pain in my feet, legs, hands and arms and the pain progressed rapidly over the coming months. In May 2013 I was referred to Dr Tim McCarthy after I hit rock bottom, I was clawing, muscle spasms, nerve pain, in the foetal position most days and experiencing intense pain. Dr Tim McCarthy worked tirelessly to provide pain control and assist me with rehabilitation. Dr Tim McCarthy had said to me just prior to going on leave and passing away that he believed he would have me in remission within 1-2 years.
Since then I have tried various treatments and medications but none with the success that I had with Tim McCarthy and at times I have retreated back so far I have been stuck in bed for weeks. I am trialling every combination of medications to treat NMDA and Glial Cell activation. These medications are costly. My monthly medications cost approx.. $600-700 AUD, then add Specialist appointments bi-monthly of $700, psychologist bi-monthly of $400, Physiotherapy monthly of $440, and then all the additional investigations to rule out other issues when my illness is mimicking other diseases approx.. $100-$500 per month and costs to get to/from appointments and it is easy to spend $3000 AUD per month. So far I have only been able to reduce the costs slightly by hitting the medicare safety net for some appointments and reduction in some of the medicine costs but that still leaves me between $1000-$2000 per month just on medical expenses. I have self-funded this treatment to date but cannot afford to continue and so now I face the prospect of my health deteriorating as I cannot afford to go on.
I am now asking for help, I know that there are many people suffering and also need help with this illness but until I can manage my own health I cannot begin to start advocating for others, which is my next goal. If I told you how I have been treated by health professionals and the stories of others with this illness you would be shocked. Sometimes fellow suffers discuss how we would be treated better as prisoners. We are seen as junkies, fakers, whingers, generally too complex and just too hard! What does that mean? Doctors will not help at times even when the issue you are trying to treat isn’t related to the illness. We know not to bother going to Emergency Departments as they do not have the training to ensure our bodies are treated with respect when we are in a flare….just someone touching as can be like a bullet to the body…so imagine having someone roughly stick a cannula into your arm. The beds are not made to support our bodies and at the end of the day Emergency is for acute not chronic patients….so we suffer at home crying ourselves through the pain praying we will come out of the flare alive.
General Issues & Complications Ongoing:
· Freezing cold. Limbs are ice cold and pain flares the colder the limbs get. It can be hot and I still feel cold, other times I feel like I am having a temperature and my head feels hot.
· Sweating on back of neck
· Nerve through left neck, shoulder and shoulder blade feels like it is being pinched, twitching or tingling but in a painful sense.
· Headaches/Migraines - Horrible headaches above left eye. My migraines recently progressed to become Hemiplegic, this is where you feel paralysed down one side of your body and struggle to talk, it is like having a stroke…the experience is terrifying.
· Tremors
· Muscle cramps/spasms/twitching
· Issues moving my legs or arms sometimes
· Muscles aches, bones ache like they are broken or feels like I have shin splints.
· Electric pulses running through my body. Feels like my body is all wound up & can't relax even as I lie in bed. I would liken the feeling to all the cells in my body getting angry and buzzing around. Pain usually kicks in when the cells get very angry.
· Burning feeling in a limb...like its deep inside the limb. Mostly it feels like a cold burn but sometimes it’s a hot burn and sometimes like a limb is dead.
· Stabbing pains in body
· Sensitivity to noise, light, clothing – intermittent
· Wake up and feel like back is twisted
· Excessive thirst
· Shortness of breath
· Constipation
· Diarrhoea
· Reflux
· Bladder issues – frequent urination, do not urinate or urgent urination required (like I will wet myself)
· Waking constantly in sleep, feel need to move body, toss and turn all night.
· Blurry vision
· Bloated stomach
· For years I sweated excessively and now I rarely sweat. Note: Since 1996 until 2013 I sweated profusely full body.
· Skin infections
· Anal fissures
· Haemorrhoids
· Gynaecological issues – completed checks with Gynaecologist but no clinical explanation.
· Gastroenterological issues.
· Nails peel off and split and other times grow quickly. Mostly they break and peel these days.
· Head hair growth slowed in 2012. In 2013 I lost a lot of hair on the left side of my head whilst the right side continued to grow. Some regrowth of lost hair in 2014 however the left side of my head only grows very slowly (i.e. less than 1 cm over a few months). The right side of my head the hair grows normally. Noticed loss of hair growth on legs, arms, feet, etc.
· Vertigo
· Light-headedness – see floating spots/stars
· Painful teeth
· Crackling in left ear like I cannot equalise pressure or there is an infection.
· No appetite - intermittent
· Body swelling for no reason – increase in pain
· Can tell when the weather is going to change as my pain tends to flare
· Unusual sores and rashes
· Irritability when tired or in pain
· Anxiety increases when I have not slept or the pain is bad
·Joints pop & ache. Left side of face always feels heavier & in the past has seemed lop-sided.
· Word retrieval problems or stumble over words when pain is bad or I am tired.
· Wake up & my hands, arms, feet and legs are numb but painful or I can’t move them freely as they feel heavy & stiff.
· Left arm feels like someone is taking to it with a baseball bat and hitting repeatedly in the upper limb. This has unfortunately spread to other parts of my body.
Organizer
Alana Jordan
Organizer
Hawthorn VIC
