CRPS Survey Is Open – Let Your Voice Be Heard

CRPS Survey Is Open – Let Your Voice Be Heard

The National Pain Report believes strongly that the voice of the chronic pain patient needs to be heard.

That’s why we wanted to bring your attention to an important survey that is being circulated.

It’s aimed at people who have Complex Regional Pain Syndrome (CRPS), a condition that is poorly understood and difficult to treatment.

The pharmaceutical company Grünenthal, a company working to develop new solutions for patients suffering from pain-related diseases, has worked together with CRPS patient groups to create this survey.

“In order to truly comprehend this poorly understood disease, we need your help – and hope you will share your CRPS experience from diagnosis to current day. We believe this survey will greatly contribute to better therapies and quality-of-life outcomes,” said Cynthia Toussaint who is Founder and spokesperson For Grace, a non-profit that deals with issues on women in pain.

For Grace is one of several pain groups that has partnered with the Company.

The aim of this research is to gain the patient perspective around CRPS and is not intended to be promotional. We will comply with all federal laws protecting your personal data. All answers you give will be anonymized and will only be reported combined with other respondent’s data, so there is no information that can identify you. Anonymized results will be shared with Grünenthal and used by both CRPS patient groups and Grünenthal for research purposes.

“We hope your answers can guide and sensitize Grünenthal and other pharmaceutical companies to the experience of living with CRPS as they develop new therapies for those with CRPS and other pain syndromes,” said Jim Broatch, who heads the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA),which provides support, education, and hope to all affected by the pain and disability of CRPS/RSD, while we drive research to develop better treatments and a cure.

To take the survey—which will take about a half hour, click here.

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Authored by: Ed Coghlan

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Joe Finland

Sympathetic back shots do not work, Spinal cord Stimulators do not work, Pain pumps are horrible, anything invasive just makes CRPS worse. Why do companies keep touting these treatments, because they make alot of money on them.

Back in December 2018, I was diagnosed with CRPS shortly after my Rt knee replacement. I am in constant agony. I can’t move my leg without the help of my left foot. The VA has has given me a handicap ramp a standard wheelchair a power wheelchair a stair lift and replaced my tub with a walk in shower. I have been on Gabapentin for my seizures. Back in 2018 the my Dr. told me to increase my dosage to 3400 mg for my constant pain! I found out the my I have rt. perineal nerve damage loss of muscle, loss hair and more and more loss of movement. I am know in a great deal of pain in my lt. knee and lt. hip. The VA refuses to give to give me any pain medication to treat it. They told me to get a medical marijuana card and try that. I did with NO relief! I left the VA and have been seen at Saint Elizabeths Bone and Joint center and New England Baptist both in Boston Ma. All they did was confirm that I had CRPS and to go to Physical Therapy. Which I did and found out that the pain was so great during and after that I had to stop! I have tried pain clinics nerve injection all to no eval. It is SO UNFAIR that the Government is so scared to treat those patients in massive pain so they can go to PT in pain free or even sleep pain free for a night. I am NOT a DRUGGY. I AM A COMBAT VETERAN HOW SERVED MY COUNTRY FOR 26 YRS. I NEVER USED OR ABUSED ANY PERSCIPTION DRUG. DUE TO MY SERVICE I WAS DRUG TESTED EVERY WEEK. NO one knows how to treat this horrible disease. I BEG OF YOU, PLEASE HELP ME!



Pamela Hoard

I have done this survey to question 16 twice and pressed next and nothing happens. Nor can I upload my answers. After over 20 yrs with is disease , who can remember my specific date. The year will suffice. Mad that the survey is dysfunctional after 21 yrs of this disease. Please pass this along to the survey people.

Jennifer Comparan

It I’d just so sad to read that we all have been treated with just less than human. We are the only group that gave our rights stripped and such discrimination. If any other race or group were treated like we are the people would be marching and rallying in the streets. At every level of our rights have been violated. What if all african/american were told to sign a contract pee in a cup to receive medication. The people, the government officials and all people would be screaming foul. There would be people marching, suing , demanding better behavior. But we are treated with such disdain and noone cares its disgusting and the health care officials. CDC, dea, governors. Doctors. Pharmacists, law makers should be ashamed of themselves that they have turned us into circus animals. The media has literally perpetuated this false interpretation of opioids. People who take opioids as prescribed and follow guidelines are not the ones overdosing. Less than 2% of people do overdose on prescribed opioids. The media shows heroin overdoses but calls it opioids. I have never used my medication to get high I use it to have a sense of a normal day
If these people who made the laws as they ate today spent one day in my body they’d be screaming for change. I guarantee they could not even do it. It’s real easy to do all of what they are doing pain free. I have lost everything and if they think for one second I am just sitting here abusing medication because some people do and have and we true chronic pain patients are paying the price. Do they really think that people who choose to be addicts are going to stop because of the opioid restriction? Cmon alcohol and street drugs is just going to increase it already has. Doctors know which patients are valid and which are not. My tests and all my medical records speak for itself and they know I have never broke a rule but yet I am continually treated as if I have. I’m so over all of it I am. My marriage has suffered my whole life is

Jennifer Comparan

I took this survey but I feel it did not give to much room to really explain. Crps is so complex and as much as I try to explain all that I endure it’s just exhausting. My life has changed in ways that I never could have imagined. I used to be a very independent, vibrant, hard-worker, social just all around happy person. Since crps I have literally become a different person. I have had to grieve my old life, the old me and I have had to learn a whole new me and wY of life. I am so angry at the treatment I receive and dont receive. I’m tired of fighting a fight noone will fight with me. I feel as if I’m just shuffled around without proper treatment and so I just feel like I dont care anymore. My relationships have suffered, i have lost so much and I’m pissed off at the healthcare system who I believe did this and now has abandoned me. I have had about 13 surgeries on my legs and I have come to learn I could have been offered a different treatment less invasive and less risk of crps. If I would have ever known this could be a result I would have gladly lived with my pain before crps. Doctors are so uneducated and so flippant about crps I just wanna scream. I want to be heard but because of my lust of medication I believe I am ignored and not relevant and have been treated with just plain disdain. I have pretty much lost my mobility. Now I have to rely on others when my whole life I’ve been taught to be self reliant and I’m not familiar with this new way of life. I feel as if I’m existing not living. I feel as if I’m a Guinea pig to these doctors and tests. I have to be my own advocate because at the end of the day these doctors are not coming home with me to care for me. There not helping me bathe or cleaning up after me or talking to me when I feel so abandoned and feel as if I have become a burden. I have guilt. And this level of pain and sleep deprivation has taken such a toll on my psyche that is indescribable. I’m angry at the flippant and awful treatment I r

Katarina Skill

@Dick Fort… I was reduced far too quickly off of a similar drug to your dad (a benzodiazepine), suddenly took me off 50%of my dose in one day, I was unable to function much at all for a year, and had major symptoms for 2 more years after that!. Find a doc who knows how to taper off a benzo ASAP!!! Look up Dr. Heather Ashton, benzodiazepines for her info on tapering. I was taught to taper only as fast as my body could handle it, took me a long time to found what was tolerable.

I could not concentrate, read, watch TV, talk on phone, type, nothing for months. It is the worst thing I have ever been through! I literally would not wish this on anyone. Benzo withdrawal can KILL if done too quickly, like a cold turkey stop off of a dose. Take your dad to a GP, and plead his case. Look up benzodiazepine withdrawal symptoms, it is harder than heroin withdrawal mentally and physically if done wrong, not per me, but per articles online. People who have been through both types have also opined that. It is more than miserable, it is torture. I worked on a forum that helped people learn how to withdraw off of antidepressants, benzos, anti convulsants like Lyrica, etc., because sadly most docs do not know how to do it right! The suffering I saw there was shocking. This may be what you are up against. Your doc seems to be trying to clean out your pocketbook, too. If you dad is on pain medications (opiates), that is a common tactic, to charge a bunch, plus to decide to drop any benzo without warning, so they will not be looked at by state medical boards.

Good Luck


New therapies? Hmmmmmmmm. And , …WHAT do we do in the mean time while OPIATES have been virtually prohibited? Try not to die quickly like we have been doing?
We may have to take a short cut here, AND GET SUITS FOR CIVIL RIGHTS VIOLATION GOING NOW.

Peggy Lindsay

I have been looking for this board for 9 years now!!! Thank you!!

Thomas Wayne Kidd

I am fearful that this is just another postponement of actually getting back to the opioid medications that have been proven to work and give us some semblance of a normal life. This evil uncaring government policy on the only actual drug we have will have to be stopped and find a way to keep government agencies like CDC and DEA out of practicing medicine. One other important thing needs to be addressed and that’s the sad fact that only 11 hours is spent teaching new doctors about pain and the treatment thereof. Billions of dollars is spent on medical education and 11 hours on the treatment of pain is insane. I am sure many pain patients would volunteer to be in their classes on pain treatment. Our nation was once the envy of the rest of the world in medicine but insanity has gripped many in the medical field and they have lost their way. It’s not emphasized way enough that the practice of medicine should be first and formost about bringing relief and hope to the sick and dying. I am not educated in medicine but I have a thinking brain and know that what is being put forth as medicine today is just above witch doctor snake oil. I haven’t given up yet but I see it off in future that I might have no option. Thank you to all of the work that those on this website have done. You’re very much appreciated.

Thomas Wayne Kidd

My pain is diagnosed as “Chronic pain without mention of Trauma, Cervical Lumbar Facet Arthropathy, Headache, Cerviocranial Syndrome. I am wondering if CRPS patients have these symptoms, and if can do the survey?



Suzanne M

I think the survey is a great way to gather more information from the patient however, I have always been extremely cautious of new meds on the market as so many turn out to have severe side effects that are not found out about until years of being on the “new” medication. I have been living with pain for 40 years and I am so done with it all…can we just keep my treatment plan where it is and maybe add a little something for those “extreme” days that work rather quickly and let you walk to the bathroom and/or kitchen/bedroom without feeling like the pain is going to collapse you to the floor where then you are stuck because you don’t have the strength to get up. I’m so done with people taking our pain and seeing us as drug seekers or like we should/could be doing things. Trust me, I would LOVE to take a walk again-or walk into a store on my own….. non-pain people just don’t know…..that’s all I’ll stop now. Needed to vent I guess!


I too, looked at some of the questions, and was planning on answering, but then the questions turned into blood work testing, checking DNA, and other things that were a little too personal for a survey that was to be anonymous. I wouldn’t mind sharing that information with a face to face Doctor encounter, but not a random “Monkey Survey”, that I just didn’t feel comfortable with.

Michele Ritzman

I replied earlier but did not include my pain. I’ve been suffering from chronic sciatica, hip, lower back and shoulder pain for years.
Please tell your other responders that other medications they may be taking can show up on urine tests as unprescribed narcotics.
I was taking 50mg of Zoloft and my Dr changed it to 100mg. Next test showed some kind of sleeping pill and valium in my system. My pain med was cut in half because of this. I researched it and found Zoloft can cause false positives. Its all [edit].

Roux En Y gastric bypass patients have malabsorption with food & medication. Drs dont know what percent our malabsorption rate is. Need pain medication designed for each patient because 1 size does not fit all. Everyrhing is a trail or error.
With all the techknowlogies handed down thought time you would think things would be better understand for dieases with no cures. I am tired of failed Total knee replacements, revisions.
Why does the FDA allow manufacturers to place malfuction hardward on the market then allow patients to suffer cronic pain.. when a patient tells a doctor that something is not right why dont they listen.
With machines that don’t photograph the complete joint we should have other options. MRI’s, Nukclear CT Scans are not 100 percent proof that something is not wrong. Unless a dr goes in to see what is wrong patients have to wait in pain. That could take 10 years.

Michele Ritzman

I don’t understand how the government and the CDC have the right to tell us how much pain we are in and have the doctors scared to prescribe enough to keep us pain free.
It’s been proven that the “opioid deaths/crisis” is caused by the illegal use of them . NOT by the people with legal prescriptions.
Are they that ignorant or stupid that they can’t process these facts?
Also, why are we the only people who are tested?

Hi LMC… Clearly Pharma along with the entire medical industry have moved their marketing prowess online where they see long-term-benefits in the tracking & compiling of uncontrolled data, while others like yourself are justifiably cautious fearing exploitative scams, data manipulation and total abuse. Either way it appears we really have no choice, it’s been a natural evolution and if managed properly can indeed benefit society in the long term in my opinion. That said I too fear the true roll of online surveys and how they can be easily tampered with to hit a preconceived marketing result by its creators. I fear the temptation to corrupt the data is too great, but what choice do we have? The medical world right now is ripe for exploitation. When huge national pharmaceutical chains can buy up all the health insurance providers, (CVS buying Aetna for example) guess what, the drug distributors now can fully control the direct sale of more and more drugs, bypassing the need for preventative and causative research. Who needs to find out the cause of illnesses when you can sell people more and more drugs to mask the symptoms… right?

Here’s another example of the slow corruption in our medical world. A recent review on the explosive growth of patient advocates (myself included) claims that nearly 93% of registered patient advocacy groups are now directly funded by large pharmaceutical and biotech companies! (I’m proudly in the 7% that doesn’t participate.) That’s right, 93% of Patient Advocates who claim they speak on behalf of “patients” have participated in FDA/PDUFA-VI discussions while lining their pockets with BIG PHARMA money, that’s a disservice to the patients they claim to represent.

Will patients ever regain their voice in the halls of the FDA?… I fear not!

Dick fort

Yea just got kicked out of his doctor for literally no reason he’s 62 and can barely walk, can’t get outta bed without help, all cause his doctor wants him to stop his clnoazapam that he’s been on for 25 years he can’t just stop that , she says that’s the only ways she’ll keep seeing him…. Now he has no where to go cause he can’t stop them meanwhile she wants to see him every two weeks at 180 dollar for each visit so $360 a month this [edit] is ridiculous


Found this survey odd. Q39 ?? Felt like respondents are gonna receive a barrage of emails and/or junk mail in the future that are tailor made for products or treatments, that are new or new & improved.

Gail Honadle

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