Omaha drug trial shows promise for pain condition

OMAHA, Neb. —
An Omaha researcher is conducting a drug trial for a drug that’s already being prescribed for a chronic pain condition for patients in Europe.
Dr. Robert Recker with Creighton University is looking for patients with Complex Regional Pain Syndrome to test the drug which comes from a class of drugs normally used to treat osteoporosis. Recker said CRPS is rather "An area of the body starts to have really severe pain for no reason. You look at it on x-ray, no matter how you look at it, you don’t find anything wrong,” said Recker who’s testing an intravenous treatment called Neridronic Acid.
“I can't deny the fact that the study in Italy cause it to be approved for it. Apparently it removes the pain quite strikingly,” said Recker.
Ron Dulas, of Lincoln has lived with CRPS for more than six years, with debilitating pain in his leg, travelling to his hands. The pain started after back surgery, for no apparent reason.
“It was horrendous. It's like someone took a hammer and just smacked your foot,” said Dulas, who’s on a number of prescription pain relievers and has been for years. He eventually had to quit his job restoring furniture at the State Capital Building, in Lincoln.
“It stops you in your tracks, you cannot breathe,” said Dulas.
Dulas was hoping to be approved for the drug trial which includes 4 infusions over the course of a week, along with vitamin supplements and clinic visits for a year.
“To get out of the situation I’m in, I’ll do anything,” said Dulas. Who learned just days ago, because he has a pacemaker he cannot be part of the trial, but may benefit from the drug if it’s approved for use in the U.S.
If you know a person living with Complex Regional Pain Sydrome, they can contact Dr. Recker’s officer for more information on the study. The phone number is 402-280-Bone, or 402-280-2663. All expenses are covered for participants.

Original post and video found here:
Last Updated when copied over: 10:47 PM CDT Aug 6, 2017 by Julie Cornell

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CRPS & the Snowball Effect: Sleep

Effects Of Sleep Deprivation

When you pull a rubber band to its furthest point, what happens? It breaks. But what if our bodies are that rubber band and our pain is constantly pulling our bodies needs and our lives we try to live in, in two different directions. Eventually something will give.

And at first, it’s painfully obvious to our friends and families that live with us. Our ability to sleep is going, going, gone! But…

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Greetings…. My name is…

Greetings…. My name is…

Hi my name is...

Hi my name is...

Hi my name is…

Hi my name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.
I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.
I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me,…

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CRPS and the Snowball Effect

CRPS and the Snowball Effect

With CRPS there are so many systems that can be effected and so many ways it can manifest uniquely for each patient. Making identification and treatment plans to be difficult to identify.

According to Wikipedia the snowball effect is:

a process that starts from an initial state of small significance and builds upon itself, becoming larger (graver, more serious), and also perhaps potentially…

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I am a Liar

I am a Liar


I am a liar…

In day-to-day life there are so many roles we have to play. For me these are wife, daughter, sister, aunt, niece, employee, advocate and one I feel is a “dark mark”, patient.

Most of these roles depend on me falling into parameters and meeting obligations. I must do what I have to in order to fulfill my roles in life.

But I sometimes can’t.

I am a Liar….

I lie to myself, I lie to…

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Enrollment of the First Patient in a Phase 3 of AXS-02


NEW YORK, Aug. 10, 2015 (GLOBE NEWSWIRE) — Axsome Therapeutics, Inc., a biopharmaceutical company developing novel therapies for the treatment of pain and other central nervous system (CNS) disorders, today announced the enrollment of the first patient in the CREATE-1 (CRPS Treatment Evaluation 1) study—a Phase 3 trial evaluating the efficacy and safety of AXS-02 (disodium zoledronate) for the treatment of pain associated with complex regional pain syndrome (CRPS). AXS-02 is a potent osteoclast inhibitor being developed as an oral, targeted, non-opioid, potentially first-in-class therapeutic for chronic pain.

“CRPS patients live with a level of pain that is unimaginable for most of us. As there are no approved treatments for this serious disease, it represents a high unmet medical need,” said Leonardo Kapural, M.D., Ph.D., Professor of Anesthesiology at Wake Forest University, and Clinical Director of the Chronic Pain Center at Wake Forest University Health Sciences Center. “This is an important clinical trial as it may increase the treatment options for those living with CRPS.”

“The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) supports research to develop better treatments and a cure for this devastating condition,” said Jim Broatch, Executive Vice President and Director of the RSDSA. “Clinical trials such as the CREATE-1 study is an example of the type of research that could yield new options to improve the lives of individuals with CRPS.”

“We are pleased to enroll the first patient in the CREATE-1 trial,” said Randall Kaye, M.D., Chief Medical Officer of Axsome Therapeutics. “This multi-national study will further our understanding of the potential role of AXS-02 in the treatment of pain associated with CRPS. The launch of this Phase 3 trial comes on the heels of our recent FDA Fast Track designation for AXS-02 in CRPS.”

In March of this year, the United States Food and Drug Administration (FDA) granted Fast Track designation for AXS-02 for the treatment of pain associated with CRPS. This designation provides greater access to and more frequent communication with the FDA throughout the entire drug development and review process, with the goal of possibly expediting approval. Fast Track designation also gives Axsome the opportunity to potentially submit sections of the AXS-02 new drug application (NDA) for CRPS on a rolling basis, and allows AXS-02 to be considered for priority review at the time of submission. AXS-02 has also been granted Orphan Drug Designation by the FDA, and Orphan Medicinal Product Designation by the European Medicine Agency (EMA) for the treatment of CRPS.

“As an organization, we aim to research and bring to market innovative therapies for sufferers of chronic pain and CNS diseases,” said Herriot Tabuteau, M.D., Chief Executive Officer of Axsome Therapeutics. “We are committed to working to find solutions for the CRPS patient community.”

About the CREATE-1 Study

This Phase 3 multi-national, multi-center, randomized, double-blind, placebo-controlled trial is designed to evaluate the efficacy and safety of AXS-02 in the treatment of pain associated with CRPS. The study is expected to enroll 190 patients at sites in the United States, Canada, Europe, and Australia. Eligible patients will be randomized in a 1:1 ratio to be treated with AXS-02 or placebo. The primary efficacy measure is the change in patient reported pain intensity, measured using the 0-10 Numerical Rating Scale (NRS). Secondary outcome measures include assessments of the change in the Brief Pain Inventory (BPI) Pain Score, Patients’ and Clinicians’ Global Impression of Change (PGI-C and CGI-C, respectively), quality of life measures, and bone turnover markers.

More information about the CREATE-1 study is available at

To learn about eligibility, patients can visit

About AXS-02

AXS-02 (disodium zoledronate) is a potent osteoclast inhibitor being developed as an oral, targeted, non-opioid, potentially first-in-class therapeutic for chronic pain, including pain associated with CRPS. AXS-02 has a high affinity for bone mineral, and reduces osteoclast activity by inhibiting the farnesyl pyrophosphate synthase (FPPS) enzyme.

AXS-02 is an investigational medication not approved by the FDA. The safety and efficacy of AXS-02 have not yet been established.


Source: CRPS in the News
Announcement made: August 10, 2015 06:30 ET by Axsome Therapeutics, Inc.
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Power of Pain: 9 Tips for Cooking with Chronic Pain – Pain News Network


By: Barby Ingle, Columnist

For those of us living with pain, we wish for a life worth living — one that permits us to enjoy our family and friends.

Preparing and sharing a meal is something I enjoy doing, but pain can make even the simplest cooking tasks more difficult, especially those that affect our hands, fingers, wrists, elbows, and shoulders.

Here are nine tips I’ve learned to make cooking easier:

1. Use pots and pans with two handles

2. Buy a food processor, especially if you have difficulty with manual cooking tasks like chopping, cutting, and slicing.

Choose a food processor that is manageable for you and your physical limitations
Before you buy one, be sure you are able to change the blades easily and remove the plastic bowl and plastic lid from the processor
Consider mini food processors for your needs

3. Use specialty cooking tools such as “Rocker” knives.

The two-handled design adds strength and control to cutting and chopping, while the rocker blade design has the motion built right in.

4. Use a stool to sit on while you prepare and cook food.

Cooking can be a long process, depending on how complicated the meal is you are preparing
When counter work starts to increase your pain or when standing over the stove is wearing you out, be prepared to pull up a stool

5. Crock pot meals

Crock pots are helpful for people with pain to be able to cook nutritious meals, but in less time and more simply.

6. Electric can opener to use on canned food or soups

Soup is simple to prepare and nutritious
Make sure you have canned soups available for when you are having bad pain days or the ingredients to make soup when you don’t feel up to cooking. Soup will warm you and soothe you.
Use a ladle to pour soup into the bowl

7. Double the size of your meals

Create planned leftovers which you can freeze and have available for another day
You will be glad you have nutritious meals in your freezer on days you don’t feel well enough to cook

8. Food Storage

Get food storage containers which are easy for you to open and easy for you to stack
Prepare and store foods which you commonly use and have them in ready-to-eat condition.

9. Organize your kitchen

Get a stove with controls on the front rather than the back
Install cabinet handles which are easy to grasp
Install vertical dividers to store pans and trays so that they are not stacked
Raise the front bottom edge of the refrigerator so it closes automatically
Store frequently used items in cupboards between knee and shoulder height
Store kitchen items near the area they are used
Store spices in a drawer or on the counter rather than in a high cupboard
There are many choices and designs for cooking tools and kitchen aids that can make cooking easier, such as ergonomic, lightweight cooking tools, which have easy grips and non-slip handles.

Spatulas, spoons, ladles, whisks and other cooking tools which feel comfortable in your hand can greatly improve manual dexterity, reduce pain, and compensate for swollen and deformed joints.

What tips have you learned to make cooking easier?

Read more here….

Posted September 18, 2015 copied September 22, 2015
RSD In the News

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New Study, Medication Gives Hope to CRPS-RSD Victims – Legal Examiner

Bryan Pope | Attorney • (972) 774-9883
Bryan Pope | Attorney • (972) 774-9883

Axsome Therapeutics, Inc., a biopharmaceutical company dedicated to developing therapies for the treatment of pain and other central nervous system disorders, announced last month that the first patient has been enrolled in the CREATE-1 (CRPS Treatment Evaluation 1) study, a Phase 3 trial evaluating the effectiveness and safety of disodium zoledronate (AXS-02) in the treatment of the pain associated with complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD).

The CREATE-1 study is expected to enroll 190 patients at sites in the U.S., Canada, Europe, and Australia. Eligible patients will be treated with either AXS-02 or a placebo, and the primary objective will be to measure the change in patient-reported pain intensity, measured with the Numerical Rating Scale.

FDA Fast Tracks AXS-02

In March 2015, the U.S. Food and Drug Administration (FDA) granted “Fast Track” designation to AXS-02 for the treatment of the pain associated with CRPS/RSD. AXS-02 is an osteoclast inhibitor being developed as an oral, non-opiod medication to treat the chronic pain. It is an investigational medication not yet approved by the FDA, and its safety and efficacy have not yet been determined. Read more here…

Source: CRPS In the News

(Copied as online data is not static and this should be retained, please know, all right are to the author and her original publication)

My life has been consumed with a monster for 7 of the last 10 years. With this image I can comfortably say, I’m in remission from the most painful medical condition known to science. I’m lucky, I’m blessed, & I’m terrified of it coming back. But I’m surviving. The reason this image is so significant is this condition attacks you from the sympathetic nervous system. This system controls vital systems in your body, like hot/cold sensation, hair and nail growth, pain with injury, sweating.

My nails have been so horrifying to look at I would go 6-9 months between times I would look at my feet. I was verbally chastised for wearing open toed shoes when I had “fungus.” But the fact is, it wasn’t fungus. It was my nervous system responding to a invalid threat causing my nails to be thick, and hard to cut.

My finger nails have normalized as well, back to their brittle stage they were before this. I’ll miss them being strong. But my toenails take longer to grow, which is why this image is so significant. In January 2015 I started a treatment. One that has turned my life completely around.

By March I was able to sleep more than 30% of the night. By May it was up to 50%. My pain is gone. My symptoms are almost gone. I have fatigue, I fight with occasional spells of pain that make me fear it is back, but so far nothing has “stuck.” But all and all my health is on its upswing for the first time since 2009, my first suspected remission which started to show signs like I am now but only lasted about 9 months before I reinjured myself.

My nails are ¾ normal and it sounds crazy, but I’m crying because of that. Not because I’m happy, but because my pain family are still suffering. Still being chastised by ignorant asses because they LOOK healthy, but are suffering. I have been through a lot in life. But this, I can’t even wish on my worst enemy. I could not condemn the most vile person enough to want them to feel this. And yet millions of people are fighting this, some with no family support, many with few family friends. This monster brings me to TEARS knowing others still are still fighting.

Please, though I know most don’t even know I exist, or follow this, but if by chance you find this. Make a point to ASK your doctor if s/he knows about complex regional pain syndrome the next time you’re in. Read a few articles on it. Watch a few of the videos made. Doctors are STILL learning about this. Patients are still being misdiagnosed. Being told it’s all in their head. Some doctors are still claiming is not real. Please for the community member you don’t know, advocate for them. You’re a chance to help get earlier diagnoses, a chance for remission for another.

I was LUCKY! But I want to increase the odds for others. This used to be a death sentence. We’re changing the landscape by educating others, healthies as we call them, but it only works if you take a little time to learn the signs. … Your actions could change the life of another. Please consider it.

Thank you from the bottom of my heart.