Some Early CRPS Survey Results Are Released

Some Early CRPS Survey Results Are Released

By Ed Coghlan.

In February, we ran a story on the National Pain Report about a survey the RSDSA was running on pain flare-ups and we asked our readers to participate.

A flare-up or breakthrough pain is defined as a transitory exacerbation of pain that occurs on a background of otherwise stable persistent pain.

We heard back from RSDSA’s chief executive Jim Broatch this week who said over 2,000 people participated in the survey and some “enlightening preliminary data” from the survey will help the organization get a better picture of the people who are interacting with his organization.

Consider these “early returns” because they are continuing to mine the data, but here are some interesting highlights:

  • 53% of the respondents have had CRPS for longer than ten years
  • 60% are receiving opioid therapy for their pain
  • 68% do not consider their pain under control
  • 65% of the respondents experience daily or flares-up several times a week.

An unexpected flare-up of one’s CRPS, fibromyalgia, or preexisting chronic pain can quickly become an unbearable situation. RSDSA wants to better help individuals who are experiencing a pain flare-up or breakthrough pain (BTP). A flare-up or breakthrough pain is defined as a transitory exacerbation of pain that occurs on a background of otherwise stable persistent pain.

Chronic illness is hard to treat. For chronic pain sufferers (or Warriors as some prefer), an unexpected flare-up of one’s CRPS, fibromyalgia, or preexisting chronic pain can quickly become an unbearable situation.

There’s no known cure for complex regional pain syndrome (CRPS), but a combination of physical treatments, medication and psychological support can help manage the symptoms. However, some people experience continuous pain despite treatment.

We’d like to thank you for participating in the survey. As more information is developed and analyzed, we will further report on the results.

In the meantime, feel free to share your own experiences in our commentary section.

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Authored by: Ed Coghlan

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This is a such a horror to talk about who could not get her meds with no warning … the DOCTOR putting that mildly, my sister DeeDee suffered with back pain as they did 3 back surgerys on her she never got any
relief, only worse pain. They had her on pain meds for years, then the awesome DEA and Surgeon General, and I”m sure others
and decided that people, ALL people, mostly pain drugger/seekers
and the people who actually need these meds, were punished the MOST.
Sadly to say when the word got out ” NO OPIATES” took her off her
medications that contained Opiates, Tried to live but she was suffering.
They did give her a drug called Lyrica, then some meds inFlammatory.
She told us the pain and withdrawals was too much, as she was crying
I didn’t know what to do, she just laid in bed suffering..
My sister took her life in a hotel room, left a note saying she couldnt
even stand to be with her family, 4 grand babies, and sisters, Dad & Mom
Me and my sister got the news and being in Texas and we in CA. got
a flight into Dallas, Parkland Airport. Like God hands did the flight was there
in 4 hrs.
We got there and wanted to see her before they pulled the plug, as i
stood there watching my younger sister, saying with tears rolling down
my face. her face looked like a blown up balloon and she coded after
12 minutes, I fell to corner of the room, watching them till someone
said, “why is she standing here ” I watched as they worked on my sister
but realizing looking at my sisters face, she was gone.
So, I want to “THANK” all the Pain Dr out there & Drs period,
Mostly the government that who had a loved one who abused opiates,
and decided to take it out on everyone. No tests or x rays, Plainly
hurt the ones that actually are in pain or the ones that gives you
some quality of life.
RSD at the time, it was called that. Now that the Pain Dr’s came to the conclusion its not all in people head. Now” RSPS,” RCPS.
I miss her so much. She was so witty and funny.

Sister I shall never forget you.

CTMama2

I took the survey, but the results so far don’t reflect my experience. I’ve had CRPS for 4 years. I’m on low-dose naltrexone (LDN), palmitoylethanolamide (PEA), IV ketamine infusions, anti-inflammatory diet, vitamins C & B & D, a topical gel for the allodynia…and I am happy with my treatment plan. Early on, opioids failed me by making me more sensitive to pain, and I had to look for something else. Glad I found LDN, which I wouldn’t have except for the brilliant videos from RSDSA.
While I wouldn’t call my pain “controlled,” as I don’t think CRPS is controllable, I would call it “managed” and that I have been restored to function. It isn’t the high-functioning level I was at pre-CRPS, but I am doing so much better than where I was before this treatment plan.
It’ll be interesting to see what else comes from this study. Each CRPS patient is so different–what works for one may not work for another. Highly variable.

Maureen Muck

I was ill and missed this survey. I had a microvascular decompression done in 2003. This was supposed to stop my Trigeminal Neuralgia. I woke up saying, “pain.” There were 2 more mvd’s, to correct errors made during the surgery. Result was hearing loss. As time progressed, I fell victim to Fibromyalgia. I have Lupus, as well, but it has been relatively mild. My point is that, as the pain grew stronger, I required different meds. Cut to the quick, I had to retire at 52 from a position I enjoyed. I can no longer drive a car.
My doctors work with me, we have lowered my med levels as low as I can stand. But I live life in fear of my meds being either cut further or taken away altogether.
I, along with my fellow warriors, don’t know if I will survive if I have no pain relief.

Chris

My CRPS is in my right foot. I’ve been struggling for 10 years and I’m just too tired to care anymore. I’ll fake it for my family and friends while I quietly contemplate my options.

Debi

I have suffered way to long, I’m 64 and I am on the same medication I was put on
14 yrs ago. No one will give me the medication I need to be able to get off the couch
and walk. Its embarrassing to have others see you scream and my face gets super
red and have actually made small children cry and grab their parent.
Now with all that i have to live with, I have rheumatoid arthritis and the RSDPS

So i cant go out anymore. Why live?? The pain has now moved to the other leg
and the pain is more intense then when I was diagnosed.
I just wish the PM Dr would do their jobs and get the treatment we need. I have to
live on 3 pills a day. Total 3 same medication. I would like to jump in front of a auto
or train, but I have children and grandchildren and a very wonderful husband who
has stayed by my side since I have been diagnosed.
I have to stop my body hurts so bad and already taken my 3 pills for the day,
as that is all I am allowed, without running out.

Dooney

You are all heros in my eyes. I have seen the McGill pain scale and cancer is in the middle. There are more painful diagnosis yet every policy I see cancer patients are being excluded. Nothing against cancer patients! My dad died when I was 16 of lung cancer and I know the suffering he went through. Its not them its the idiots making these changes who dont even know the term McGill pain scale. Seriously, Kelly Anne Conway as lead opioid commissioner. Not a pain specialist or even a doctor leading this but a spiritual advisor. I probably know more than she does after following this site plus my own experiences.

I just had a surgery that pain wise is up there, compared to amputation. Yet I suffer because of the CDC BS.

Sometimes I just dont want to read these articles and comments because it makes me sooo angry and sad as to what people are facing.GOOD people who had a decent life on opioids and now confined to their beds. Its sickening what we deal with. I hope things change but dont have a lot of faith. You are not only warriors but survivors.

Debra

I have have CRPS, and have had it since April 2001. I have had over 30 ganglion Stellate blocks, epidural, trigger points, and even a spinal cord stimulator trial that got infected. I now not only have full body CRPS, I suffer from fibromyalgia, and have trouble swallowing my food at times from to many nerve blocks in in throat. I now am treated with medications, but still suffer everyday from pain and flare ups, because Dr’s are afraid to actually prescribe the pain medication that will keep us out of pain, because of this new war on opioid. And the people that suffer from it is the people that have chronic pain. I know there is no cure for CRPS,or fifibromyalgia, but you would think there at least be compassion!! God bless everyone who suffers with chronic pain!!

MonacoMan

I participated, as I have done since the late 90’s with Rsdsa. Thankful for they & the NPR. Have seen and experienced alot along this quarter century juorney. Many new & exciting treatments coming about. Even a cure (for some) in fast track trials.

Going to take Healthcare a while to catch & catch on. For old me, I just have to keep plugging along, guess my time came too soon.

Hi Ed and everyone✨
I endure the sibling condition known as Central Pain Syndrome from a stroke and the daily pain is quite severe. CPS/CRPS share similar symptoms and it takes a good combo of meds, complimentary, and alternative therapies just to have quality of life. Which I believe is every chronic pain patient’s desire; a good quality of life. I look forward to reading more on the survey results ✨

Laura

I missed the survey on this, but I believe it. I have had CRPS for 3 years and with a messed up medical system in the U.S. I was refused pain management early on because of insurance when that is the time to beat it. At 3 years I am just in pain management and getting Stellate ganglion injections. Doctors here don’t prescribe opioids. They prescribe anticonvulsants that make one a zombie or effects our cognitive and memory terribly. Opioids through surgery have never held such an impact on cognitive difficulties. Gabapentin and Lyrica have far worse effects!

Simply astonishing Ed. Clearly not enough is being done to effectively treat and manage those who must endure a lifetime of chronic pain. I can only imagine what would happen if the profit incentive for pain management could be replaced with a more intrinsic & compassionate approach. Keep up the good work, and I’m looking forward to the final result of the survey.

Terry

For those of you who don’t think CRPS is that bad, look up the McGill Pain Index and look it up, it’s at the very top right above cancer. It’s no joke. My pain management doctor cut my meds drastically and quickly, too quickly, I have never felt this bad in my life! When he was prescribing the correct amount of pain medication my life was glorious, I felt great, every day was good, now my life has been destroyed by of all people, the DEA. There aren’t the right words for how I’m feeling mentally and physically, it’s an all time low. CRPS, I wish I could be normal.

Wendy R Burnett

Adhesive Arachnoiditis should also be included in this study, We have flares usually after minimal physical stress. Adhesive Arachnoiditis is also incurable and progressive. Most of us take opiods to be functional.