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My life is fragmented. I have the public face that is the one most people see me wearing on the days I don't have bad pain. Then I have the grim face of pain as I struggle through long nights when sleep is not possible and pain takes over my body. Rosemary Eagle |
This is My Story
I am an artist, I live in Australia, I also have Complex Regional Pain Syndrome (CRPS). I have two identities, the life of CRPS pain & disability, and my life as an artist. The two lives are however intrinsically entwined; my crutches leaning in the corner of my studio and my pain and limitations are a constant reminder of the CRPS.
My CRPS relates to known nerve damage. I had surgery to remove a neuroma (growth) on a nerve in the web space between my 1st (big) & 2nd toes on one foot in an attempt to stop severe shooting pains that were preventing me weight bearing. The surgery did not resolve the pains and I developed CRPS. This was in 2007 and it took 4 years to be diagnosed. For over 8 years I was unable to walk at all without crutches; needless to say it has dramatically altered my life.
Some of the losses include giving up work before I had intended, not being able to travel easily and basically no longer being the independent person I used to be, I am virtually house bound and dependent on my husband who is my carer. I would like to say at this stage that not everyone becomes this disabled from CRPS but most sufferers have some degree of debilitation or disability.
Appearances
Despite my crutches and wheelchair I may look “healthy,” but I often suffer unbearable, unrelenting burning pain as well as spontaneous severe stabbing/shooting neuropathic pains. The McGill Pain Scale rates the pain of people with CRPS higher than that of people with cancer. My pain ranges from 3/10 to 10/10 where it becomes pain that I cannot ignore as it jolts my whole body; it is not the type of pain you can push through. Strong pain killers including Pethadine have no effect whatsoever on my pain and this was and still is for me one of the most frightening aspects of my CRPS. In the first 5 years I had absolutely no way of controlling the pain. Again I need to impress that this is not the case for all sufferers, everyone’s CRPS is different.
In the Beginning 2007-2008
Before the diagnosis of CRPS I underwent 2 more surgeries, 2 radio frequency treatments using ultrasound, I tried acupuncture and numerous other therapies including a variety of drugs. My local GP understood the severity of my pain and he sometimes treated me with tibial nerve blocks when I was screaming with non stop shooting pains but these nerve blocks did not last long and were not a practical or safe way of managing the pain long term. The third & final surgery tidied up some nerves that had adhered to the bone capsule between the metatarsal bones and that stopped the foot feeling like it was full of twisted electrical wires all the time; the surgeon actually said to me after the operation “no wonder you were experiencing that level of pain” which was one of the few acknowledgements at that point in time that my pain was severe. However as is the nature of CRPS the pain eventually returned after the operation despite the fact that I knew the main damaged nerve was now safely away from where it had previously been jammed between two bones.
More Doctors
In 2009 I started seeing a pain management doctor who was inconsistent in his opinion of what was causing my pain; early in my experience with him he said I had localized CRPS and then 12 months later he said I didn’t have CRPS. He did not understand/believe the severity or nature of my pain, maybe because the few times I saw him I was not having shooting pains but perhaps a better explanation would be that he did not specialize in neuropathic pain or CRPS. So my experiences with him were extremely upsetting and humiliating; I learnt to hide my emotions when I saw him in the hope he would take me seriously. He put me on various drugs such as Lyrica and then Epilim which I trialed for between 4 months and 1 1/2 years, and when I said they did nothing to help but just gave me dreadful side effects such as trouble thinking and speaking clearly, he told me to increase the dose which also did nothing to help. He gave me the impression that he thought I was making a big fuss about pain that I should be able to handle; he told me I should keep taking the drugs and become more active or my foot would atrophy and my pain would get worse. I felt like I was being treated like a child.
My Head!
During this time I started seeing psychologists to help me deal with the pain and my disability, I might also add that I subscribed to a euthanasia website to explore this as an option for the future; I do not think suicide is an option as it hurts too many loved ones but learning about euthanasia gives me a light at the end of the tunnel should this pain become worse to the point where there is no quality of life possible. Eventually I found a very good psychologist close to home and I saw her for two years at monthly intervals; she is still there if I need her. I remember that I went along to the first appointment thinking there was nothing she could possibly do to help me but how wrong I was. At that stage seeing her was the best thing I had done.
At Last a Diagnosis 2012
It was now over 4 years since this nightmare had begun and I had pretty well given up on doctors but then by a twist of fate and a series of events I was given an appointment with a very experienced pain management doctor who was also the director of a major pain clinic in another city. He was fantastic and immediately diagnosed CRPS type 2, he told me to stop all medications as he believed they were of no use to me. At last I knew I had a correct diagnosis, although by then I had already self diagnosed and reduced the ineffective medications. More appropriate treatment options were now discussed and I felt a huge sense of relief to have found someone who understood, was on my side and who showed me respect ; I no longer felt abandoned.
My Husband/My Carer/My Rock
As a result of CRPS I am disabled; I use crutches, an electric wheelchair and mobility scooters. I depend on help from my husband who is my carer; the tasks he has to do for me every day include shopping, helping with the cooking, more than his fair share of the dishes, helping with the cleaning and laundry, taking me to appointments and supporting me through bad pain flares. It is hard to watch someone you love in pain but it is also hard for me to see him so distressed when I am in pain yet both of us know this two way emotional pain is unavoidable.
Day to Day /A Serious Business
How do you rebuild your world around pain that invades your body 24/ 7 . There is no safe place, no holiday from pain, the pain is unpredictable and unrelenting. No one is going to come to my rescue, no operation or brilliant surgeon is going to ‘fix’ my pain, it is here to stay.
My pain is usually worse at night and most days it is not visible to other people. "What is wrong with your foot?" I am asked, there is no simple reply that makes sense, so I usually say I have a pain disease following surgery and damaged nerves which does not really tell them much at all. Some of my family and most of my friends have not seen me experiencing a severe pain flare, they have not seen the way it jolts my body like a series of electric shocks. How do you explain pain such as this, how do you explain CRPS and all its complexities.
Most days I have a few shooting pains, some days the pain is minimal pain but that is unusual. However the spontaneous shooting pains can often be continuous and this is called a pain flare. My pain flares start at any time without warning. This means that within a few hours I can experience a large number of spontaneous severe shooting pains that occur in clusters with perhaps a minute or two in-between, sometimes the shooting pains change to a deep crushing, throbbing pain. These pains can go on for several hours until the number of pains per hour reduces slowly over a period of days and the pain level reduces to a more tolerable one. After a pain flare the sympathetic nervous system is in a heightened state of awareness and another flare can start with very little provocation; movement and vibration such as traveling in a car or riding my scooter down the street, using my crutches to get into a cafe can be enough to set off the pain again. This type of on and off pain flare can last for months and leaves me sleep deprived and physically and emotionally exhausted.
A pain flare is usually the result of too much activity in the period leading up to it, this activity may not sound much at all to a normal person but for me it can be as simple as a trip to the doctor or the local hair dressers or too much activity in the kitchen helping to cook a meal. The pain flare may be delayed and may simply start out of the blue a week later for no apparent reason. During a pain flare the foot and leg become bright red and extremely sensitive (this is called Allodynia) and the slightest touch or movement can set off a shooting pain.
Despite the foot usually feeling ice cold to touch, it feels like it has been badly burnt most of the time, the burning pain is usually worse at night and this makes it hard to get to sleep, the shooting pains make it impossible to get to sleep. Most people with CRPS have trouble sleeping. During a pain flare I need to elevate my leg as gravity aggravates the pain and I cannot put any weight on the bad foot, even just resting my foot on the floor will aggravate the pain. When I am on my crutches my bad foot becomes bright red and pain can be triggered just by being vertical.
I have no way of exercising apart from simple, slow clinical Pilates and stretching exercises on a floor mat, getting up from this mat is always a challenge. Swimming does not work because it sets off a massive pain flare due to the water pressure, the movement, even gentle movement, and the physical activity of getting into the car, being driven to the pool and wheeled in and out of the pool.
Coping
I have developed strategies for coping with my pain flares, see my coping list, but sometimes I break down and don't feel I can go on, this is when the emotional support of my carer/husband is important as once I have had a good cry I usually gather strength again to get through another night of pain and sleep deprivation. I have a few very supportive friends who make a huge difference to my life and stop me feeling totally isolated from the world. My father when he was alive was not so understanding and felt it was a matter of me seeing the right doctor and getting it ‘fixed’; he never really grasped the reality that not everything is medically fixable.
I also have my printmaking/art studio which when I am not in bad pain is my haven, my place where I find the person I used to be and the person that is still inside my changed body. My studio is somewhere to focus on something I love doing; I also pursue new creative learning and involvements within my capabilities through books, the internet and contact with other artists.
But an Amazing Thing Did Happen!
In 2007 I was diagnosed with Parkinson’s Disease but that was not the amazing thing -keep reading!
My symptoms were a mild head tremor and hand tremors. When the CRPS started the year after I felt I was really doomed so my grief was two fold. I saw a neurologist for 4 years but my symptoms did not progress and I did not need medication but the knowledge that I would get worse was always there. Then by chance I changed neurologists, and then occurred a moment that I will never forget. I was in the new doctor's room for the first time and he had just given me a variety of tests, the sort of strange things neurologists get you to do such as asking me to hold a full glass of water and pour it into another glass. Slowly he sat back in his chair and asked if we wanted to hear the good news first which of course we did.
“ I can cure your Parkinson’s” he said
“What” I mumbled my eyes popping out of my head while I took in what this meant “You mean I don’t have it?"
So my Parkinson’s was taken away and I was re diagnosed with a condition called Cervical Dystonia which is being treated successfully with 3 monthly botulinum (botox) injections in the neck. I felt that being undiagnosed with Parkinson’s disease was a gift, a miracle, how many people did this happen to, not many said the neurologist. He said he had the advantage of hindsight and the fact that for 4 years my symptoms had not progressed; he also specialized in movement disorders, especially Dystonia.
The Financial Cost
My QuickBooks tells me we have spent over $35,000 to date on my medical and disability related expenses after taking into account some government grants funding for a scooter and some of the bathroom modifications. Hard to believe isn't it but I have all the receipts. The major expenses included redesigning the bathroom so there was a walk in shower and grab rails everywhere and a non slip floor but we also had to re landscape the back yard so I have ramps and level entry to the house, then there was the small transportable scooter and portable ramp, the wheelchair and the knee walker, crutches, orthotics and shoe modifications for my good foot, and medical bills not covered by the gap. The next big cost was going to be a suitable car that my scooter or wheelchair could be driven straight into, this was to replace our 16 year old station wagon, however we did some research and discovered that a suitable vehicle, even a second hand one, was beyond our financial means, so we continue to use a system of ramps and our station wagon which we upgraded to a 7 year old model with lower mileage.
A few years ago I was grated an aged care package which now funds new wheelchairs and various other items as well as weekly home help. (Once you are 65 years old the NDIS is no longer applicable but the level of the aged care package I was given allows for my disability needs)
Graded Motor Imagery
I commenced Graded Motor Imagery therapy in December 2013, the first stage was done using a computer program under the guidance of a specialist physiotherapist. The more I read, the more I understand why the word complex is used to describe this disease; the brain and how it functions is full of many unknowns. However this therapy was unsuccessful for me.
Ketamine Infusion -Amazing!
In February 2014 I had my first 5 day', in hospital, Ketamine infusion. My pain management doctor thought it was a good time to see if Ketamine could help reduce my pain. The best case scenario was that it would help reduce my allodynia and pain for a period of time (unknown), on the other hand it might do absolutely nothing. I responded really well to this drug and for 4 days was able to partially weight bear on my bad foot with absolutely no pain. Most of the time I felt slightly spaced out (a side effect of the drug) but it was like a holiday from pain and although I couldn't fully weight bear I was still able to wander around the hospital using my crutches and two feet , it was amazing! The Ketamine infusion has a carry over effect and can help lower my pain levels for a few months afterwards.
More Ketamine
My specialist explained, and I have also read, that consecutive infusions can often be beneficial in giving longer pain relief so in April I had another infusion, over a 3 day period this time. The drug was commenced at a higher level than last time so it was pretty full on from day one. The pain relief again was 100%, this time I did not experience a lot of random images but my mind was very active with many new creative ideas and reflections on the role of art in helping people live with chronic pain. My pain relief had a much better carry over effect/outcome this time with over 3 weeks of almost zero pain allowing some partial weight bearing each day. Following a pain flare, I revised my pacing schedule baseline with the help of my physiotherapist and determined to continue my timed weight bearing each day for as long as possible.
Two months further on I am now using my bad foot around the house and averaging about 8 minutes partial weight bearing each day. Experience has taught me that this situation could change at any time but I am thinking positively and hoping it will last for much longer; being able to use one and a half feet makes life so much easier and puts less strain on my good foot, my shoulders and arms. Life has improved dramatically in the last 12 months.
August / Not So Clever After All!
Three months further on and things have changed again and taken a turn for the worse. I had another Ketamine infusion early August which went well with good relief but I made the mistake of thinking it would 'fix' my bad pain flare and did not pace myself as well as I should have afterwards, a few weeks later another pain flare set in and I have been struggling to get on top of it. I am woken up early in the mornings by severe shooting pains which is one of my least favourite times to experience these pains, I turn up my stimulator and try to tame them, sometimes managing to go back to sleep for another hour. I fell into a depression and had trouble getting back on track, I started pondering a question that I know has no definitive answers -"where do I find the energy to keep handling this disease?". I took action and wrote a long list titled 'Painful emotions, feelings & thoughts/Abstracting moods' and pinned it to my studio wall.
September / So What Went Wrong?
In my usual philosophical way I analyzed why I had sunk into a depression and started to feel much better. I had mistakenly decided that I had found a fail proof plan for managing my pain better and expected that I would be able to partial weight bear on my bad foot most days, I felt empowered. So when things did not go according to my expectations it was a huge disappointment. By facing the reality that neuropathic pain is in so many ways unpredictable I can move forward and start focusing on some of the tools I have to get back on track again. I learned a lot of valuable information recently from some long sessions in hospital with an excellent physiotherapist and occupational therapist. I am working on pacing all my activities better and am feeling more energized –for now.
Plans for my Continuing Story
I have decided to continue my ongoing story in my Blog, my story is becoming quite long and as there is currently no cure for CRPS I am stuck with a pattern of life that comprises trials & errors, hospitals, electronic devices, operations, drug infusions, pain flares and some better weeks and good periods thrown in thankfully. Parallel to this is my art activity which I believe is instrumental in managing my changed life. If CRPS is monotonous for me I suspect it must surely become so for the reader, so enough is enough in this section of my site, if you have made it this far, thank you for taking the time to read my story, if you are a CRPS sufferer or family or carer of that person I hope you have gained something positive from doing so.
Summary of Recent Years
2015 Another year of regular Ketamine infusions, some good periods and bad patches.
2016 Mostly positive until December. I started WALKING for the first time in 8 years! Well more of a hobble really and only a few steps at a time most days but NO CRUTCHES. Then in December I was thrown back into the pain universe with a major devastating pain flare -For the full stories about these 2016 events go to my BLOG
2020-2021 CRPS continues with its ups and downs alongside the pandemic, I had a nasty second degree burn on my good foot and was afraid it might turn to CRPS but it thankfully it didn't, I had surgery to replace my Spinal cord stimulator battery in August 2021 and I made a new friend with crps who I met early in 2020 before the pandemic took off.
2022 Regular Ketamine infusions continue and help me maintain some weight bearing and improved quality of life. walking without crutches is not happening much due to the level of pain that follows being intolerable but most days I continue to use both feet with the aid of crutches for small stretches of time.
My art continues to sustain me with the undertaking of a 6 month online course in abstract art giving me new insights and enthusiasm.
The reality of life is that not all stories have happy endings. There are not guarantees in life and this makes each good day precious.
Please note you can now subscribe to a mailing list to receive notification emails of new Blog entries. To subscribe Go to my BLOG
My CRPS relates to known nerve damage. I had surgery to remove a neuroma (growth) on a nerve in the web space between my 1st (big) & 2nd toes on one foot in an attempt to stop severe shooting pains that were preventing me weight bearing. The surgery did not resolve the pains and I developed CRPS. This was in 2007 and it took 4 years to be diagnosed. For over 8 years I was unable to walk at all without crutches; needless to say it has dramatically altered my life.
Some of the losses include giving up work before I had intended, not being able to travel easily and basically no longer being the independent person I used to be, I am virtually house bound and dependent on my husband who is my carer. I would like to say at this stage that not everyone becomes this disabled from CRPS but most sufferers have some degree of debilitation or disability.
Appearances
Despite my crutches and wheelchair I may look “healthy,” but I often suffer unbearable, unrelenting burning pain as well as spontaneous severe stabbing/shooting neuropathic pains. The McGill Pain Scale rates the pain of people with CRPS higher than that of people with cancer. My pain ranges from 3/10 to 10/10 where it becomes pain that I cannot ignore as it jolts my whole body; it is not the type of pain you can push through. Strong pain killers including Pethadine have no effect whatsoever on my pain and this was and still is for me one of the most frightening aspects of my CRPS. In the first 5 years I had absolutely no way of controlling the pain. Again I need to impress that this is not the case for all sufferers, everyone’s CRPS is different.
In the Beginning 2007-2008
Before the diagnosis of CRPS I underwent 2 more surgeries, 2 radio frequency treatments using ultrasound, I tried acupuncture and numerous other therapies including a variety of drugs. My local GP understood the severity of my pain and he sometimes treated me with tibial nerve blocks when I was screaming with non stop shooting pains but these nerve blocks did not last long and were not a practical or safe way of managing the pain long term. The third & final surgery tidied up some nerves that had adhered to the bone capsule between the metatarsal bones and that stopped the foot feeling like it was full of twisted electrical wires all the time; the surgeon actually said to me after the operation “no wonder you were experiencing that level of pain” which was one of the few acknowledgements at that point in time that my pain was severe. However as is the nature of CRPS the pain eventually returned after the operation despite the fact that I knew the main damaged nerve was now safely away from where it had previously been jammed between two bones.
More Doctors
In 2009 I started seeing a pain management doctor who was inconsistent in his opinion of what was causing my pain; early in my experience with him he said I had localized CRPS and then 12 months later he said I didn’t have CRPS. He did not understand/believe the severity or nature of my pain, maybe because the few times I saw him I was not having shooting pains but perhaps a better explanation would be that he did not specialize in neuropathic pain or CRPS. So my experiences with him were extremely upsetting and humiliating; I learnt to hide my emotions when I saw him in the hope he would take me seriously. He put me on various drugs such as Lyrica and then Epilim which I trialed for between 4 months and 1 1/2 years, and when I said they did nothing to help but just gave me dreadful side effects such as trouble thinking and speaking clearly, he told me to increase the dose which also did nothing to help. He gave me the impression that he thought I was making a big fuss about pain that I should be able to handle; he told me I should keep taking the drugs and become more active or my foot would atrophy and my pain would get worse. I felt like I was being treated like a child.
My Head!
During this time I started seeing psychologists to help me deal with the pain and my disability, I might also add that I subscribed to a euthanasia website to explore this as an option for the future; I do not think suicide is an option as it hurts too many loved ones but learning about euthanasia gives me a light at the end of the tunnel should this pain become worse to the point where there is no quality of life possible. Eventually I found a very good psychologist close to home and I saw her for two years at monthly intervals; she is still there if I need her. I remember that I went along to the first appointment thinking there was nothing she could possibly do to help me but how wrong I was. At that stage seeing her was the best thing I had done.
At Last a Diagnosis 2012
It was now over 4 years since this nightmare had begun and I had pretty well given up on doctors but then by a twist of fate and a series of events I was given an appointment with a very experienced pain management doctor who was also the director of a major pain clinic in another city. He was fantastic and immediately diagnosed CRPS type 2, he told me to stop all medications as he believed they were of no use to me. At last I knew I had a correct diagnosis, although by then I had already self diagnosed and reduced the ineffective medications. More appropriate treatment options were now discussed and I felt a huge sense of relief to have found someone who understood, was on my side and who showed me respect ; I no longer felt abandoned.
My Husband/My Carer/My Rock
As a result of CRPS I am disabled; I use crutches, an electric wheelchair and mobility scooters. I depend on help from my husband who is my carer; the tasks he has to do for me every day include shopping, helping with the cooking, more than his fair share of the dishes, helping with the cleaning and laundry, taking me to appointments and supporting me through bad pain flares. It is hard to watch someone you love in pain but it is also hard for me to see him so distressed when I am in pain yet both of us know this two way emotional pain is unavoidable.
Day to Day /A Serious Business
How do you rebuild your world around pain that invades your body 24/ 7 . There is no safe place, no holiday from pain, the pain is unpredictable and unrelenting. No one is going to come to my rescue, no operation or brilliant surgeon is going to ‘fix’ my pain, it is here to stay.
My pain is usually worse at night and most days it is not visible to other people. "What is wrong with your foot?" I am asked, there is no simple reply that makes sense, so I usually say I have a pain disease following surgery and damaged nerves which does not really tell them much at all. Some of my family and most of my friends have not seen me experiencing a severe pain flare, they have not seen the way it jolts my body like a series of electric shocks. How do you explain pain such as this, how do you explain CRPS and all its complexities.
Most days I have a few shooting pains, some days the pain is minimal pain but that is unusual. However the spontaneous shooting pains can often be continuous and this is called a pain flare. My pain flares start at any time without warning. This means that within a few hours I can experience a large number of spontaneous severe shooting pains that occur in clusters with perhaps a minute or two in-between, sometimes the shooting pains change to a deep crushing, throbbing pain. These pains can go on for several hours until the number of pains per hour reduces slowly over a period of days and the pain level reduces to a more tolerable one. After a pain flare the sympathetic nervous system is in a heightened state of awareness and another flare can start with very little provocation; movement and vibration such as traveling in a car or riding my scooter down the street, using my crutches to get into a cafe can be enough to set off the pain again. This type of on and off pain flare can last for months and leaves me sleep deprived and physically and emotionally exhausted.
A pain flare is usually the result of too much activity in the period leading up to it, this activity may not sound much at all to a normal person but for me it can be as simple as a trip to the doctor or the local hair dressers or too much activity in the kitchen helping to cook a meal. The pain flare may be delayed and may simply start out of the blue a week later for no apparent reason. During a pain flare the foot and leg become bright red and extremely sensitive (this is called Allodynia) and the slightest touch or movement can set off a shooting pain.
Despite the foot usually feeling ice cold to touch, it feels like it has been badly burnt most of the time, the burning pain is usually worse at night and this makes it hard to get to sleep, the shooting pains make it impossible to get to sleep. Most people with CRPS have trouble sleeping. During a pain flare I need to elevate my leg as gravity aggravates the pain and I cannot put any weight on the bad foot, even just resting my foot on the floor will aggravate the pain. When I am on my crutches my bad foot becomes bright red and pain can be triggered just by being vertical.
I have no way of exercising apart from simple, slow clinical Pilates and stretching exercises on a floor mat, getting up from this mat is always a challenge. Swimming does not work because it sets off a massive pain flare due to the water pressure, the movement, even gentle movement, and the physical activity of getting into the car, being driven to the pool and wheeled in and out of the pool.
Coping
I have developed strategies for coping with my pain flares, see my coping list, but sometimes I break down and don't feel I can go on, this is when the emotional support of my carer/husband is important as once I have had a good cry I usually gather strength again to get through another night of pain and sleep deprivation. I have a few very supportive friends who make a huge difference to my life and stop me feeling totally isolated from the world. My father when he was alive was not so understanding and felt it was a matter of me seeing the right doctor and getting it ‘fixed’; he never really grasped the reality that not everything is medically fixable.
I also have my printmaking/art studio which when I am not in bad pain is my haven, my place where I find the person I used to be and the person that is still inside my changed body. My studio is somewhere to focus on something I love doing; I also pursue new creative learning and involvements within my capabilities through books, the internet and contact with other artists.
But an Amazing Thing Did Happen!
In 2007 I was diagnosed with Parkinson’s Disease but that was not the amazing thing -keep reading!
My symptoms were a mild head tremor and hand tremors. When the CRPS started the year after I felt I was really doomed so my grief was two fold. I saw a neurologist for 4 years but my symptoms did not progress and I did not need medication but the knowledge that I would get worse was always there. Then by chance I changed neurologists, and then occurred a moment that I will never forget. I was in the new doctor's room for the first time and he had just given me a variety of tests, the sort of strange things neurologists get you to do such as asking me to hold a full glass of water and pour it into another glass. Slowly he sat back in his chair and asked if we wanted to hear the good news first which of course we did.
“ I can cure your Parkinson’s” he said
“What” I mumbled my eyes popping out of my head while I took in what this meant “You mean I don’t have it?"
So my Parkinson’s was taken away and I was re diagnosed with a condition called Cervical Dystonia which is being treated successfully with 3 monthly botulinum (botox) injections in the neck. I felt that being undiagnosed with Parkinson’s disease was a gift, a miracle, how many people did this happen to, not many said the neurologist. He said he had the advantage of hindsight and the fact that for 4 years my symptoms had not progressed; he also specialized in movement disorders, especially Dystonia.
The Financial Cost
My QuickBooks tells me we have spent over $35,000 to date on my medical and disability related expenses after taking into account some government grants funding for a scooter and some of the bathroom modifications. Hard to believe isn't it but I have all the receipts. The major expenses included redesigning the bathroom so there was a walk in shower and grab rails everywhere and a non slip floor but we also had to re landscape the back yard so I have ramps and level entry to the house, then there was the small transportable scooter and portable ramp, the wheelchair and the knee walker, crutches, orthotics and shoe modifications for my good foot, and medical bills not covered by the gap. The next big cost was going to be a suitable car that my scooter or wheelchair could be driven straight into, this was to replace our 16 year old station wagon, however we did some research and discovered that a suitable vehicle, even a second hand one, was beyond our financial means, so we continue to use a system of ramps and our station wagon which we upgraded to a 7 year old model with lower mileage.
A few years ago I was grated an aged care package which now funds new wheelchairs and various other items as well as weekly home help. (Once you are 65 years old the NDIS is no longer applicable but the level of the aged care package I was given allows for my disability needs)
Graded Motor Imagery
I commenced Graded Motor Imagery therapy in December 2013, the first stage was done using a computer program under the guidance of a specialist physiotherapist. The more I read, the more I understand why the word complex is used to describe this disease; the brain and how it functions is full of many unknowns. However this therapy was unsuccessful for me.
Ketamine Infusion -Amazing!
In February 2014 I had my first 5 day', in hospital, Ketamine infusion. My pain management doctor thought it was a good time to see if Ketamine could help reduce my pain. The best case scenario was that it would help reduce my allodynia and pain for a period of time (unknown), on the other hand it might do absolutely nothing. I responded really well to this drug and for 4 days was able to partially weight bear on my bad foot with absolutely no pain. Most of the time I felt slightly spaced out (a side effect of the drug) but it was like a holiday from pain and although I couldn't fully weight bear I was still able to wander around the hospital using my crutches and two feet , it was amazing! The Ketamine infusion has a carry over effect and can help lower my pain levels for a few months afterwards.
More Ketamine
My specialist explained, and I have also read, that consecutive infusions can often be beneficial in giving longer pain relief so in April I had another infusion, over a 3 day period this time. The drug was commenced at a higher level than last time so it was pretty full on from day one. The pain relief again was 100%, this time I did not experience a lot of random images but my mind was very active with many new creative ideas and reflections on the role of art in helping people live with chronic pain. My pain relief had a much better carry over effect/outcome this time with over 3 weeks of almost zero pain allowing some partial weight bearing each day. Following a pain flare, I revised my pacing schedule baseline with the help of my physiotherapist and determined to continue my timed weight bearing each day for as long as possible.
Two months further on I am now using my bad foot around the house and averaging about 8 minutes partial weight bearing each day. Experience has taught me that this situation could change at any time but I am thinking positively and hoping it will last for much longer; being able to use one and a half feet makes life so much easier and puts less strain on my good foot, my shoulders and arms. Life has improved dramatically in the last 12 months.
August / Not So Clever After All!
Three months further on and things have changed again and taken a turn for the worse. I had another Ketamine infusion early August which went well with good relief but I made the mistake of thinking it would 'fix' my bad pain flare and did not pace myself as well as I should have afterwards, a few weeks later another pain flare set in and I have been struggling to get on top of it. I am woken up early in the mornings by severe shooting pains which is one of my least favourite times to experience these pains, I turn up my stimulator and try to tame them, sometimes managing to go back to sleep for another hour. I fell into a depression and had trouble getting back on track, I started pondering a question that I know has no definitive answers -"where do I find the energy to keep handling this disease?". I took action and wrote a long list titled 'Painful emotions, feelings & thoughts/Abstracting moods' and pinned it to my studio wall.
September / So What Went Wrong?
In my usual philosophical way I analyzed why I had sunk into a depression and started to feel much better. I had mistakenly decided that I had found a fail proof plan for managing my pain better and expected that I would be able to partial weight bear on my bad foot most days, I felt empowered. So when things did not go according to my expectations it was a huge disappointment. By facing the reality that neuropathic pain is in so many ways unpredictable I can move forward and start focusing on some of the tools I have to get back on track again. I learned a lot of valuable information recently from some long sessions in hospital with an excellent physiotherapist and occupational therapist. I am working on pacing all my activities better and am feeling more energized –for now.
Plans for my Continuing Story
I have decided to continue my ongoing story in my Blog, my story is becoming quite long and as there is currently no cure for CRPS I am stuck with a pattern of life that comprises trials & errors, hospitals, electronic devices, operations, drug infusions, pain flares and some better weeks and good periods thrown in thankfully. Parallel to this is my art activity which I believe is instrumental in managing my changed life. If CRPS is monotonous for me I suspect it must surely become so for the reader, so enough is enough in this section of my site, if you have made it this far, thank you for taking the time to read my story, if you are a CRPS sufferer or family or carer of that person I hope you have gained something positive from doing so.
Summary of Recent Years
2015 Another year of regular Ketamine infusions, some good periods and bad patches.
2016 Mostly positive until December. I started WALKING for the first time in 8 years! Well more of a hobble really and only a few steps at a time most days but NO CRUTCHES. Then in December I was thrown back into the pain universe with a major devastating pain flare -For the full stories about these 2016 events go to my BLOG
2020-2021 CRPS continues with its ups and downs alongside the pandemic, I had a nasty second degree burn on my good foot and was afraid it might turn to CRPS but it thankfully it didn't, I had surgery to replace my Spinal cord stimulator battery in August 2021 and I made a new friend with crps who I met early in 2020 before the pandemic took off.
2022 Regular Ketamine infusions continue and help me maintain some weight bearing and improved quality of life. walking without crutches is not happening much due to the level of pain that follows being intolerable but most days I continue to use both feet with the aid of crutches for small stretches of time.
My art continues to sustain me with the undertaking of a 6 month online course in abstract art giving me new insights and enthusiasm.
The reality of life is that not all stories have happy endings. There are not guarantees in life and this makes each good day precious.
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Rosemary Eagle and her husband and carer John Eagle at the opening of the 'Not Born Digital' exhibition at The Ararat Regional Gallery, October 2015
