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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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

Dave2

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?

WILSON H HULLEY

HERE IN THE DC AREA…WE NO LONGER HAVE ANY RSD MD. MUST GO UP INTO NY STATE OR DOWN TO ATLANTA. SO VERY SAD… NO ER WITHIN THE JOHNS HOPKINS ER DEPARTMENTS HAVE ANYONE WITH A WORKING KNOWLEDGE OF RSD. SO VERY SAD!!!!!!!
TREATMENT IS NEARLY IMPOSSIBLE TO OBTAIN

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!

JaneF

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 my.dad 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

LMC

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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