CRPS My Journey: Chapter 13 - Burning Nights!

In Chapter 12 we started sharing stories of fellow CRPS warriors. Unfortunately the fellow warrior that I have asked to share their story for this chapter fell through at the last minute. However, I thought it is important to share the following with you as this is something real that every warrior have to deal with every day of their lives.

The Fire within!

I've been on a managers retreat this past weekend, and as we sat around the fire, something occurred to me. Looking at the fire, you won't put your hand in the fire, because you know you will get burned really bad. When the wood is burned out, you are left with red-hot coals which eventually turns into ash. Again you won't put your hand in the red coals because you know that, although there is no flames, you are still going to get burned really bad. With the ash however, it is easy to think that the heat is gone. So sometimes you may forget that moments ago it was a burning flame, and so by accident you touch the ash with your hand and get burned. You forget that the bricks underneath are still retaining that heat, and ash can retain the fire's heat even for days, and then eventually reignite a fire.

I think this explains something about CRPS. When people see that your hand (or affected body part) is swollen and red, they know/assume you are probably experiencing a flare-up, or have pain or burning. And yet sometimes your hand is swollen, but not really red or discoloured, or it is red but not really swollen. And then you have those days when you have this excruciating pain and burning, but there are no outward signs. Like the ash, your hand looks "normal", as if the danger is gone. And it is often at these times when it feels at its worst, because like the ash, the fire is lingering, waiting for the right circumstances to reignite.

One of the crucial things about CRPS is that the disease is often not visible on the outside...but this does not mean that it is not there. High Blood Pressure is often referred to as "The Silent Killer" because you cannot always see the signs and symptoms, but it is there, and it is deadly. In the same way CRPS often has a way of camouflaging itself, waiting for the right time to hit where it hurts the most. Although it is often shared with other diseases, it does not like to share the spotlight with anyone. Sure it may stir other diseases behind the scenes to protest with it, but once action is needed to contain the uproar, it steps forward as the "Anti-Hero" of the story. And it wants you to believe that it is the victim, not the villain, although it is actually the instigator.

So the question that I have been asking a lot lately is this: "Why is the burning always worse at night?"

A lot of CRPS warriors, myself included, experience burning during the day, but at night it intensifies. We talk of burning nights, one of the main causes for a lack of sleep or a disturbed sleep cycle.The same reason that I am writing here at 1 o'clock in the morning, while the rest of the staff is sleeping. Ironically, good proper sleep is needed for the body to heal itself and for us to be able to deal better with the pain and burning, but because of the burning and pain we can't get the sleep that we so desperately need. It becomes this vicious circle which really leaves you in a catch 22. And it is not that you don't want to sleep... You just can't.

The Funny Bone ain't that Funny!

The other day at work I was talking to two of my workers, when I hit my funny bone on the fence. Believe me, there was nothing funny about it, as immediately it felt like a volcano has erupted inside my hand while fire and brimstone is ascending down from the heavens onto my hand. It was not just a normal numb feeling, this was the most excruciating pain and burning you can think of, and more. I literally fell to my knees and just clung to my hand and tried to calm it down while struggling through the burning. I did not hit my hand. I did not hurt my hand. I hit my funny bone, in my elbow, but immediately my hand counter reacted. CRPS causes the affected body part to be on 24/7 alert. You cannot sneak anything past it, as it will set off the body's alarm with a deafening display of pain and burning sirens. I don't even think that the world's best trained soldiers are able to do what CRPS can.

But coming back to the fire, this made me think, usually at night, after I get home from work and the kids are sleeping, I would sit on the couch with my hand elevated on a cushion. And that would be when I feel the burning much more intensely than through the day. But why? Hopefully if I can find out why, I can try do do something about it, to prevent or minimize it.

So I started to read up about it, and some of the things that I read actually made a lot of practical sense.

According to the United Physician's Group, the following plays a role:

Body position:     

The weight of your body when you lie down can create greater pressure on the affected limb/nerves;

Temperature:        

Colder room temperature make you sleep better, but colder room temperature also triggers joint pain and neuropathy can make you more sensitive to cold;

Attention & distraction: 

Your mind is less distracted at night, which makes you more aware of your pain;

Hormone Levels: 

"As your body prepares itself for sleep, your hormone levels, metabolism, and many other biochemical processes adjust. Some of these changes may heighten your pain. Cortisol, for example, has anti-inflammatory effects. However, your cortisol levels drop through the first half of your sleep cycle to let you rest, potentially making pain from rheumatoid arthritis worse."

Medication & Timing: 

"The medications that control your pain well during the day may be wearing off too soon at night. Or your nighttime biochemistry and symptoms may require a different dosage or medicine." - https://unitedphysiciangroup.com/tag/sleep

Brian Barr also talk about a Lack of distraction: "During the day, people are more likely to be preoccupied with everyday tasks and events, such as taking care of priorities and partaking in hobbies, which leaves less time to dwell on painful symptoms." - https://brianbarr.co.uk

Which somehow does make sense to a certain extend. But then, following the same rationale, if this is the case why would I get this intense pain and burning when I hit my funny bone (which is not close to my hand), during broad daylight when I am not sleeping, while my mind was occupied by what I was telling my staff. It was hot outside, I was not lying on my hand (or hitting my hand), I was not hormonal and I took my medicine before work as I always do. Shouldn't I then be exempted from the burning? Maybe it is just me playing devil's advocate, because the statements that both Brian Barr and the United physician group make does make sense. I just think that it is not quite as simple as that. They do however start by saying that not all causes are fully understood and that these may be possible causes only. It is not set in stone.

But it does make you think. I mean, I have CRPS Type 1, but I am affected in the same way as someone with Type 2 CRPS, or someone with LUPUS etc. For one person it is the physical nerve damage, for another it is the physical changes in the brain...and yet the effects are the same and we both get flare-ups.

What Causes CRPS Flare Ups?

The website www.burningnightscrps.org puts it as follows: 

CRPS flare ups can be caused by any number of different reasons. Flare ups can cause a person to become frustrated, upset, isolated and a feeling of not being in control.

The reasons for acute CRPS flare ups include the following:

CRPS Flare ups can be triggered via any different number of reasons. 

Stress
Fatigue
Being Unwell

Overdoing an activity

Weather changes (barometric pressure, temperature etc.)

Insufficient recuperation time

Prolonged exposure to hyperalgesia or allodynia

Extreme emotions

Staying in the same position for too long

Medication changes

Diet changes

And sometimes for no reason at all

Understanding the causes of your CRPS flare up can help you develop your plan to deal with them. This is why keeping a pain diary such as the Burning Nights CRPS Support CRPS and chronic pain diary can help you learn or understand the causes of some or all of your flare ups. (Burning Nights)

So it seems that most health care providers and websites agree more or less on what may be the causes of flare-ups and why it seem to be worse at night: sleep, temperature changes, fatigue, lack of exercise, medicine...and possibly NO reason at all. Interesting though that everything that they mention are exactly the things that we need, but that that we feel TOO sore or exhausted to do, or struggle to do:

We need sleep...CRPS cause your body to struggle to sleep.

We need to exercise...CRPS cause too much pain and exhaustion/fatigue to exercise.

Colder temperatures....CRPS thrives in cold temperatures.

Diet changes and medication...medication causes weight gain and have other side effects.

Attention and distraction...we need to "shut off" our brains to get enough rest, but CRPS uses that to make us more aware of its existence.

For NO reason at all...CRPS LOVES this one as it can blame anything and everything for it's rampage, sit back and then claim innocence.

So, is there a solution? Each person need to work that out for themselves it seems, as everybody is affected differently. Is there a reason why it burns more at night? Again it depends from person to person it seems. Is there then any clear answer to this? Unfortunately not. One thing that we can agree on is that whether there is nerve damage or not, all CRPS warriors have to deal with root fire (fire that burns underground in the roots of trees and that can burn for months at a time until it hit a pocket where it shoots up to the surface. A very dangerous type of fire). Whether the burning increases at night, or you injure the affected limb, or your body simply arms its defences because you hit your funny bone, none of us are exempt from the burning that CRPS brings. And whether there are physical signs and symptoms that others can or cannot see...well it seems that CRPS does not always care about that too much. It likes to show some mysteriousness to the world. And yet to CRPS warriors there is nothing mysterious about it, just plain annoyance, suffering and irritation. To the world it may seem like a highly trained secret undercover agent that moves in the shadows, undetected...to CRPS warriors it introduces itself from the start as James Bond does - I'm Syndrome, Complex Regional Pain Syndrome. 

How do I cope with the Burning Nights?

Every person has their own coping skills that work for them specifically, or at least help them in a way. It is important to build up a arsenal of coping skills that you can draw from. What I have experienced is that sometimes a specific coping skill won't work on a certain given time...and other times it would be the go-to coping mechanism.

There are a number of skills noted that can be useful, but as I said it differs from person to person. There may even be warriors for whom none of them may work. Burning Nights Organisation suggest the following:

1. Support Group or Community - online or near your home;

2. Pace yourself on every activity;

3. Learn to relax;

4. Accept your diagnosis;

5. Speak to your GP, Psychologist, Psychiatrist or Therapist for advice;

6. Take up a hobby, or continue doing it if you have one;

7. Exercise as far as you are able to;

8. Hypnosis

9. Biofeedback;

10. Distraction

11. Visualisation / Guided Imagery

12. Deep Breathing Exercises

Then there are the obvious treatments like:

1. Prayer 

2. Medication

3. SCS

4. Deep Pulse Massager

5. Physiotherapy

6. Mirror Therapy

7. Desensitizing

8. Graded Motor Imagery (Brain Training)

9. Mindfulness "Meditation"

10. Heat therapy

11. Rest / Sleep therapy

12. And many more...

In my own arsenal I use a number of these treatments and/or coping skills (and you can probably add more than what is listed here) - some of them for specific things like for example:

• Prayer/Faith - the cornerstone of my life and my journey - without God as my foundation, I won't be able to get through any of this. 
• Heat therapy - strangely enough, even when my hand feels as if it is boiling inside, a heat pack works for me - ice is death to my hand, even just walking past the cold freezers in the stores, like oil on fire - a hot shower, not so much as it makes me feel short of breath at times.
• Desensitizing - still struggle with this one at times - there are times when my hand feel like the skin is being scraped off, and then there are times when it feels "more normal" - whatever "normal" may be
• Graded Motor Imagery (Brain Training) & Mirror Therapy - especially those times when my hand feel far away, or as if it is someone else's hand, these are my go to (although I try to do them every day). It is actually "fun" to see my hand and brain squirming around as they try to make sense of how my hand is not moving, but in the mirror it is - not so much fun though when my hand starts retaliating with jolts of pain and burning as my brain gets frustrated
  
• Distraction - Work helps to distract me - I think it is all about keeping your mind busy so that you do not fall into a rut where all you can think about 24/7 is the pain and burning and how you are not able to do certain stuff any more. Music also plays a big role here for me, especially when I am at that certain shop, or when the noise around me becomes too much and I become anxious - it helps to drown out the noise and take me away to a different calmer place
• Mind-fullness "Meditation" - Start of my day before I go to the office - helps to prepare me for the day, just to be aware and to get on the same page with my hand. It is almost like that handshake that boxers do before a fight where the ref will tell them "let's have a clean fight. No hits below the belt"
• Sleep/Rest - supposed to help for fatigue - not when you have CRPS. With CRPS you get to a point where you are too tired to get into bed and go to sleep, and you wake up too tired to open your eyes and take that first morning breath. Instead of following normal imprinted day to day functions, that you do not have to think about, like opening your eyes, getting up, go shower etc....you know think of every little action for a about 5 min before you actually do it. BUT sleep/rest is not only there that you can have more energy, it is also there to help your body to heal it self. So even if I feel tired, my hand feels much worse if I had a bad night of not sleeping.
• Medication - well as I said before, none that helps for pain, BUT at least it helps to prolong the gaps at which the messages are being sent to my brain
• Exercise - I know what it is supposed to do...I have yet to get myself to that point where I can actually start with it.

I can go on, but what I want to show is that every treatment, every coping skill has its place - you just need to find out which belongs where for you. It is not a one-treats-all kind of deal. BUT if you ain't gonna start somewhere, then nothing is going to work (help) for you, as there will be nothing to work. I cannot drink water from the tap, if there is not water in the tap. I cannot say that Mirror Therapy does nothing for me, if I have never tried it before, or that physiotherapy is too much to handle, if I have never had any.

Of course there are things like SCS that I have not yet tried, simply because I am not ready for that yet, and don't think I will be for a long while. A number of the other stuff helps, and if it becomes too much I go for physiotherapy or deep pulse massaging or speak to a doctor or therapist. Sometimes a combination is what I need, at other times one single thing is enough. I need to learn to read my body. Don't get me wrong...NONE of these things takes away the pain or burning or will ever take away CRPS. What it does help is to make me less sensitive and more able to manage the pain and burning. And that alone is a major win in my books.

Life is for the Living!

Often in life we have these annoying little "CRPS-like" things in our lives that we know we need to overcome or get rid of. Unlike CRPS it is often possible to overcome or get rid of, but we need to work at it. According to science it takes between 18 and 254 days to break a habit, and usually it is easier to do so when you work on forming a new more positive habit in its place - like rewarding yourself. Again, unlike CRPS, we do not have to live with the same sin or bad habit day in and day out. We can choose to change. We can choose to break the cycle. If you think it is tough, then you don't know what tough is. A lot of CRPS warriors wish that they can break away from CRPS, that they can be healed. Unfortunately CRPS does not work that way, but they still fight the battle everyday to ensure better life expectancy for themselves. So looking at the greater scheme of things, that little sin, or that little habit or that little "secret" that you cling on to, that you feel that you cannot let go because it is too hard...is really not so hard if you really want to let go of it. 

My wife has been suffering with SLE for 21 years, and had to make a lot of life altering adjustments and sacrifices in order to try and minimise the pain and to live healthier. She will never be free from SLE. I have been living with CRPS for more than a year, people like Matt and others for 9 years and longer. We will never be free from CRPS. Yet we can still choose how to live our lives despite these diseases. And the things that we do have control over....we can choose to hold onto those root fires, or let go of them. Life is too short to hold onto crap that prevents us from living. I have held onto anger and resentment towards my brother for so long that we have not spoken in 7 years, and you know what I realised in this past year battling CRPS? 

1. I had the power to free myself so that I can focus on my health and deal with CRPS, by forgiving him; 

2. He probably does not care about what he has done to me and don't even think about it - probably think he was right all along - which caused me to imprison myself unfairly for so long; 

3. It is his loss, as he would have enjoyed my kids so much, especially as he could never have sons of his own, and especially Liam (who he has never even met), that loves sport so much.

Don't let LIFE pass you by because you failed to let go of things that were holding you back. I can not get rid of CRPS. I can not undo CRPS. But I can look forward and I can do things that enables me to deal with CRPS much better than a year ago. Yes, some root fires in our life we may not be able to predict or put out, but some ash in our lives we certainly can, if we are willing to try.

CRPS My Journey: Chapter 12 - You Matter!

I Believe You!!!

"I Believe YOU" are the most important words you can say to someone with CRPS.

Often being an "Invisible disease", it is understandable that people may often think that you are making stuff up. But why would any person in their right mind want to make up something so terrible as CRPS? The pain and burning itself is not something that you can fabricate or copy. The medication is not something that any sane person WANT to take, especially knowing what the possible side effects may be. So why is it so hard for certain people to believe that you can have something so devastating as CRPS? It seems that it is easier to believe that someone that had a knee injury when he was ten years old can predict the weather, than it is to believe that someone, that "seems healthy", can have constant complex pain that cannot be treated.

"I Believe YOU" are the most important words you can say to someone with CRPS. CRPS warriors do not need pity. CRPS warriors do not need quick fixes. CRPS warriors do not need false hope. CRPS warriors do not need to be ostracized from society. What CRPS Warriors need, is to be believed. The words, "I Believe You" carries great power. These three words can often be the only thing keeping CRPS from living up to the name "Suicide Disease". Save a life today. Tell a CRPS warrior that you believe them, not to antagonise them, but because you truly believe them.

Part of November being CRPS Awareness month is for reasons such as this, to make the world aware and educate people on Complex Regional Pain Syndrome in all its "Glorious" facets. So as part of my contribution to creating awareness I want to share some stories of warriors, that became friends, that I have met along the way. People that have been struggling with CRPS and who have experienced loneliness, being cast out and ridiculed, being disbelieved and cast aside even by their closest family members, friends, acquaintances - and all of this simply because people cannot comprehend the complexity of CRPS. Ironically this often happens when CRPS warriors experience good days. It seems that there is something in the human psyche that would rather look for the worst in people, than rejoicing with them when it is going well. We would rather criticize, than be glad for them.

One such story of suffering is of Matt Frank, a New Yorker, who has lived with CRPS for the last 9 years now. Please note that some of the images may be graphic, but necessary, so that you may understand his journey and how far he has come. Matt has CRPS Type II of the Lower Left Extremity, and here is his story:

Matt Frank - 53 years

April 2013:

My day started out as any other normal workday. Working as a Commercial Property Accountant, I went for a spinning class after a long day’s work. As it was a beautiful spring night, I enjoyed the refreshing walk back to my New York apartment, looking forward to a quiet relaxing evening.

At my apartment, I decided to take a shower before sitting down for dinner. With my right leg already inside the bathtub, and my left leg outside the bath, I went to adjust the water temperature. As the cleaning lady came in earlier to clean the apartment, I did not notice that she had not flattened the bathtub mat completely on the floor of the tub. By the time I realised, it was already too late, as I slipped on the bathtub mat.

The predicament I was in, with my one leg being inside the tub, and the other outside the tub, caused me to land in a very awkward position, and not on my butt as would usually be the normal reaction for your body when you fall. The fall created a giant hematoma or blood clot on my Lower Left Extremity. The doctors feared for acute compartment syndrome (A painful and dangerous condition caused by pressure build-up from internal bleeding or swelling of tissues. The pressure decreases blood flow, depriving muscles and nerves of required nourishment. Symptoms may include severe pain, sensation of pins and needles and weakness of the affected area. For severe cases of compartment syndrome, emergency surgery is required. - Mayo Clinic)

It was an excruciating pain I could not describe. Ten days later, surgical drainage or fasciotomy was needed to treat my leg. (Fasciotomy or fasciectomy is a surgical procedure where the fascia is cut to relieve tension or pressure in order to treat the resulting loss of circulation to an area of tissue or muscle. Fasciotomy is a limb-saving procedure when used to treat acute compartment syndrome - Wikipedia)

June 2013:

In June 2013, a skin graft was performed overriding the trauma. I had no way of proving what triggered the compromise of the nerve. It could have been from the initial fall, or from the fasciotomy or even the skin graft. At this point I realise that it does not pay for me to look back. It is what it is, as like most of us, we get this condition through injury, or surgery gone wrong.

July 2013-September 2019:

During the period from July 2013 to September 2019, the affected region on my leg would cause symptoms synonymous with CRPS, but I continued quality of life. I'd say a pain level of not more than 2-3 out of 10 at most times.

When I did address this with neurologists, I was informed that it was a mild case of neuropathy or copper deficiency. My Primary Care Physician (PCP) even referred me to a well-known hospital here in Manhattan, where they performed numerous tests. Unfortunately, the MRI of my brain and affected area, was inconclusive and did not lead to a proper diagnosis of nerve damage. At this time, CRPS was also a term that the doctors, and myself, have never heard of.

Had I been diagnosed earlier, perhaps, it could have at least led to early remission, but seeing that this was an unknown field, I had no such luck. I was an athletic hiker at the time and found that over the counter Lidocaine patch worked for me, for a while any way.

October 2019

As time went on, CRPS symptoms progressed. Especially with allodynia (Allodynia is defined as "pain due to a stimulus that does not normally provoke pain." An example would be a light feather touch (that should only produce sensation), causing pain), burning, and tingling. Especially nights were difficult, and gradually the symptoms started to spread to my foot, and eventually to my toes in my right foot.

May 2021:

As I needed clearance for an operation to fix a torn meniscus, my PCP sent me to see a Pain Manager as my CRPS symptoms were progressing.

June 2021:

By June 2021, pain was now constant and effected all quality of life. Two pain doctors and a neurologist all diagnosed me with Type 2 CRPS - unfortunately the diagnosis was 8 years too late for it to go into remission.

July 2021-Current:

So by July 2021, I had to quit my job that I proudly held since I graduated college. I started with all possible treatments in the hope that some, if any, would give me some relief or bring my symptoms into remission. Yet, I have been living with CRPS for so long, undiagnosed, that Pain has become the norm. Not only the physical pain, but also the mental aspect as well. Constant lack of sleep, painful physical activity, loss of my mobility (I need cane at all times), just doesn't equate to make one look forward to everyday. Wouldn't be human if not. This is just some of the awful symptoms that I have to deal with every day.

Yes, CRPS has been a thief, and robbed me of everything across the board, however, I will not let this define me. I will never give up hope, as I will forever find a means to deal with it. My next step is a DRG stimulator (Dorsal Root Ganglion). (DRG stimulation therapy is a new type of neuro-stimulation therapy designed to manage difficult-to-treat chronic pain in specific areas of the lower body, such as the foot, knee, hip or groin.)

Yet, as much pain as I have to endure, I try to make it a point to be active - although under my own terms. I focus on walking, stretching or going on bike, even if it is only for 20 minutes. I work out my arms and other leg so as not to have the symptoms spread.

The allodynia and coldness is constant. The atrophy and dystonia has made walking and even standing quite uncomfortable. I am always at risk of tripping. Yet, I'm not going to lie in bed all day, taking meds that masks the pain, leaving me too exhausted to get up. I choose to rather dial up some pain, coping daily, than to be a "slug" in bed all day.

When it comes to seeing family and friends, I do my best to do so. I plan accordingly, so as to preserve my energy for those days. Otherwise known as spoon therapy. Of course, I lost a lot of friends, colleagues, and acquaintances in this time. Yet, even without this terrible diagnosis, we probably all do. People don't understand how just wearing a sock, slipper or sneaker is quite painful, and even bathing has become a tedious task. I avoid going out to restaurants, as wearing slacks is annoying. Why should they understand, as they don't experience what I am going through?

 

It is not all doom and gloom however. Although I have become a great actor in not showing my pain, I have not lost my sense of humour. I take great pride in being a great uncle and helping others with this diagnosis. I am also more charitable than ever, which is quite humbling. As I look back on my past, I would certainly entertain some of the little things that bothered me. I would trade those things any day in return for CRPS!

Change is part of life. All tidal waves can be riding out and accepted. Therefore, I have made the decision that instead of waking up with a mantra that "if I'm not in pain, it means I'm dead", I replaced it with "unwrapping each day like a precious gift."

Dealing with this every day, with the lack of treatments, and of course the excruciating pain is something that none of us signed up for. Yet, that is why we are warriors!! - Matt

"Too late" does not mean all hope is lost

Initially the plan was to have five chapters, which turned into eight, which turned into ten, and now by God's grace has brought me to chapter twelve. I am blessed to have been able to share my journey so far, and more so to be asked by many of you to continue to do so. I think that not only my journey, but also the journey of so many others out there that are suffering, whether it be with CRPS or any other disease that is robbing them of quality of life, need to be told firstly to create greater awareness, but also to encourage other warriors - and even people that may be going through other hardships in life, even if not a terrible disease. People need to hear success stories. They need to know that suffering does not always need to end in suffering and negativity. They need to know that they are not fighting their battles alone, that everyone has their own battles to fight, but that there is HOPE. They need to hear that it is possible to have quality of life, even though their quality of life as they have known it, has been robbed from them. It may not be what they set out for it to be, but that does not mean that their lives are over.

Like Matt also said here, Change is part of life. At the end of the day your attitude is what matters. Matt made the decision to change his attitude from "waiting to die" to seeing every day as a gift of new life and new possibilities. He chose to continue exercising, even if it is hard and not what he has been used to all his life. Although his diagnosis came 8 years too late to reverse the symptoms or put the disease into remission, he did not give up hope. He made a decision to deal with what he had, and to do everything that he could to prevent it from spreading any further. Matt is one of the unsung heroes that took something so bad and life altering, and decided to do everything in his power to turn it around and to be an inspiration to others.

People that deal with something like CRPS need to know that their lives matter. That their struggles are not in vain. Although they themselves may not see their purpose any more, they have still so much to give to the world.

Being part of the solution

For the last couple of months, I have often felt like a guinea pig - trying different medications, trying different coping mechanisms etc. The fact is that CRPS is very complex, and there really is no one type of treatment that works for everyone - if any. Doctors, psychiatrists, phycologists, therapists - most of them learn through studying real life cases. And as most of them does not go through these experiences themselves in order to really understand what we are going through, it is as much a learning curve for them, as it is for us. By learning through my experiences, they may be able to help the next person. And perhaps in a year or five, by studying my experiences, who knows, they might perhaps be able to develop the right medicine or treatment for me. So while I often feel like a guinea pig, I do realise that in the bigger scheme of things, I may be contributing to a world that is yet to learn so much about CRPS and how to deal with it.

I can be a part of the problem and just accept that I have CRPS and be negative and wait for the disease to become worse and give in to hopelessness OR I can be part of the solution. Even if I have to live with this for the rest of my life, my experiences can help others to find hope, can help doctors to better understand and possibly develop new medication and/or coping techniques. My life matters! Yes, for now, there may be a lot of things that I can not do as before, but that does not make me useless or hopeless. If my story can touch one life, can give hope to one warrior, can inspire one person, can help one person to better understand CRPS, then my life have great meaning.

I want to challenge you to reach out to one person that is suffering during the month of November - CRPS Awareness month. And if you do not know someone with CRPS, reach out to someone that is suffering with some sort of chronic pain or disease. I want to challenge you to tell that person that you believe them, and to sit down and listen to their story...REALY LISTEN - without judgement, without trying to fix them, without pitying them. Clear your mind and listen so that you may hear their heart and that you may understand and empathise. Often all they need is someone that will listen to them and believe them!