CRPS Foundation Start-Up Costs

$22,600 of $100,000 goal

Raised by 220 people in 16 months
Created April 17, 2018
ComplexTruths, Inc., is a non-profit foundation located in the United States fighting a disease you may have never heard of, but probably know someone who has, called Complex Regional Pain Syndrome, CRPS (called RSD, Reflex Sympathetic Dystrophy until 1994). It is the most painful condition known to human existence. It is a disease of the nervous system, starting after an injury on a limb, and amputation does not stop or cure it.

There are 200,000 known American's with this disease, but researchers believe the number could be as high as 5 million in the US have this disease, but it is undiagnosed or MISDIAGNOSED as other diseases like fibromyalgia, lupus, neuralgia, scleroderma, joint disorders, and many other auto-immune diseases.

Until we find a cure, others, like the 4.8 MILLION we believe are still undiagnosed in America alone, will continue to suffer from no medications and no treatments that can cure, trying desperately to manage this condition on their own -- being left to suffer this horrendous condition with no end in sight.

CRPS does not discriminate. 

It doesn't care about age, creed, color or sex.  It is a disease of the central & autonomous nervous system that can happen to any one, after any injury, at any time. .

It attacks and it is vicious.  It destroys families and leaves people suffering in its wake of suicide and sadness. 

It can happen to anyone at any time, after any injury — simply stubbing your toe can cause this disease - are you next? Your wife? Your husband? Your child? You parents?

At ComplexTruths Inc, we seek to not only spread awareness for CRPS, the most painful disease in the world with no cure, but we aim to provide hope to those who are afflicted with the disease.

Want to learn more? Find more at www.ComplexTruths.org/pain

We are raising money to help spread the word to the 857,000 registered doctors and medical professionals in the United States so that we can help diagnose patients faster that the average 3 years.

The disease is called CRPS, Complex Regional Pain Syndrome and there is NO CURE. 

It is a disease of the central and autonomous nervous system and it causes excruciating, burning pain.  It generally starts in a limb after an injury to soft tissue or surgery, and then, in 70% of cases, it can spread to anywhere there is a nerve until it has taken over the entire human body. 

It is known by MANY several names, some of them are more we'll known them others; including RSD (Reflex Sympathetic Dystrophy), Shoulder-Hand Disease, Causalgia, and Suicide Disease.

It was tragically named Suicide Disease, grouped with other horrible diseases with no cure, because 4 out of 5 people with this disease die, by their own hands, because the pain is too much to bear once it has spread to the full body, which can include organs, heart, brain, and genitals.  As it is a disease of the central and autonomic nervous systems, amputation is not a cure and has been known to make it spread to other limbs, faster. 

It attacks and it is vicious -- destroying families and leaving people suffering in its wake of suicide and sadness.  There are 200,000 known American's with this disease, but researchers believe the number could be as high as 5 million! 

This is what your funds will do:

1. To bring truth to this disease. Period. We are fighting the most painful disease in the world, and it deserves to be treated with the ferocity and strength. We are warriors here at ComplexTruths, Inc., and warriors don't hold punches. 

2. To provide hope to those suffering from the disease, that we may spread enough awareness that those that are undiagnosed, may get the diagnosis that they need to help get their pain levels down to a manageable level until a cure is discovered, and those that are diagnosed, can find the courage that they need every day to keep fighting and never give up hope.

3. To build a strong technical infrastructure so that we can spread awareness globally as a way to help spread awareness on a domestic, global and human level.  

4. Create a powerful technical hub, one place where survivors, caretakers, and medical professionals can gain access to information about the disease so that survivors don't have to hunt & peck in private social networks to find information about the disease, risks, symptoms, causes, diagnosis criteria, resources, and available treatments, and information about those treatments.

5. Until the medical community is 100% up to speed on this disease, we will provide a blogging platform to survivors, caretakers, and medical or subject matter experts, to speak from their first-person experience, to use as a knowledge base.  This will be such a valuable tool for those who don't have the want or know-how to create their own websites -- because they can just use our easy-to-use blogging form to help other survivors and their caretakers by sharing their own personal experiences. 

6. Our ultimate goal is to find a cure for this disease. Every dollar that we raise will in some way, go towards finding a for a cure for this disease.  Until that day comes, we will enter into battle with our swords drawn and shields up.  

CRPS is a NERVOUS SYSTEM disease, so while the brain thinks the injury is where the original injury was, it's actually all in the nervous system.  So it can spread -- to your other limbs, organs, heart, eyes, mouth....genitals. Imagine how horrible that is.  No wonder that 4 out of 5 people with this disease commit suicide.  I just can't even imagine it spreading....everywhere. 

Plus, there is no relief -- there are "treatments" but they are band-aides, and they only partially work, and sadly, they only "reduce" the pain.  While I did get treatment, I got something called "Neridronate Acid" where I had to fly to Italy as it is "so painful they don't even allow it in the USA yet" - I still will most likely never fully recover, and even if I do, the chances of me twisting my ankle, or getting a splinter, or something else over the course of the next 40 years of my life, will simply bring it back and I will be on pain medication and be managing my pain for THE REST OF MY LIFE. 

There is this index, called the McGill Index, that rates pain in a bunch of different categories.  It is the most complex and complicated scoring available for pain ratings, and CRPS is at the very top.  On a scale of 1-50, it ranks a 46 out of 50 -- worse than natural childbirth, amputation....anything really -- simply because there are no medication or therapies available known to cure or even treat the pain. Learn more at : www.ComplexTruths.org/pain

Here are some symptoms of CRPS

·      Constant crushing bone ache
·      Constant burning sensation
·      Painful knots, cramps, spasms, & atrophy
·      Muscle contractions
·      Difficulty moving and range of motion.
·      Restless leg syndrome
·      Holding still causes excruciating pain
·      Freezing cold skin temperatures
·      Low body temperatures (mine have been as low as 96.1 degrees)
·      Whole leg discoloration and blotchiness (see pic below)
·      My skin is painful at the slightest touch
·      I can't take showers, I have to take baths
·      Standing feels like foot is asleep
·      Feels like I am being Tasered on my shin
·      On avg I sleep about 2-3 hours per night

Here are some pictures of what the disease looks like


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As I've shared with you, stress creates Cortisol and CRPS feeds on Cortisol. I think the stress of interviewing yesterday and the realization of that hit me - of what would happen to my body if I worked out if there house - was more stress than I could handle. I woke up this morning in SEVERE pain. Not even the new Fentynal patch or pain killers stopped my pain this time. Which started the tears and the realization that my life, as I know it, is truly over. I had visions of the repo man hauling all of our stuff away because there's is no money to pay there bills next month if I can't work, and I can't work if I can't get better. That's just the reality of the situation. We don't have a huge savings account, enough for one month of bills, that's it. So come June, if I don't have a job, we go delinquent on everything except the mortgage and necessities which Jeffs pay covers. So all that just rolled through my head like a thunderstorm and trained down in tears all day long. I literally cried from 9am-9pm. That emotional pain manifested into a physical pain in my body to BOTH knees. I don't even know what to make of all this but I'm scared.
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Today, I went on my first interview out of the house. It was quite a ways away from home, about an hour in decent traffic. The job seemed right up my alley and definitely something I could easily do, but instead of being excited, as I should, about the great opportunity with great benefits and a new title to stick on my resume, my heart is heavy because my real take-a-way is that it showed me that while I have this horrible disability, I can't see a future for myself where I am able to work outside the home. All in all, I was up and about, sitting at a conference table and in a car, without my leg elevated, for a total of 4 hours. Throughout the day, my pain levels would increase so that the my mouth would go dry and I would shake. What the interviewer saw as nerves, was really pain. When I got home, I was in excruciating pain. My leg was bright purple, and hurt so badly I can't even describe the pain. Anyways, another day with CRPS.
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There are two different theories on stages for CRPS. Some experts believe there are 4 stages. Some believe there are 3.

In the belief where there are 4 stages, the spreading to the organs happens in stage 4 at the one year from onset/injury mark, but I couldn't find a image online showing stage 4.

Either way, I am in Stage 2 (based on my surgery date of 2/16) where we have the chance to reverse it with that treatment in Italy.

July 16, 2018 is my 6 month mark from surgery where I officially (by the calendar) enter Stage 3 - although the doctor said I am progressing to fast through the stages as it is already spreading to my whole leg so "time is of the essence" (his words) and I may be at stage 3 faster than the average because of the severity.
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Thank you to everyone who has got us closer to our goal of getting to Italy. Every dollar counts. The last few days have been interesting and tough. Tricking the brain is exhausting work. It actually causes physical pain, nausea, fainting, and a bunch of other uncomfortable and very principal symptoms. My husband touched my leg today and I cried. Gentle touches shouldn't hurt like that. The stress of not knowing what is going to happen next, not knowing if I'm going to be OK, is causing the CRPS to spread. Today, my foot turned purple which I haven't seen since the very beginning when it first started. I'm scared, I'm horrified that I'm not gonna make it out of this OK without this fix from Italy. Please pray this is temporary. Please help.
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$22,600 of $100,000 goal

Raised by 220 people in 16 months
Created April 17, 2018
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