CRPS Event Builds Awareness and Creates Hope

CRPS Event Builds Awareness and Creates Hope

By Ed Coghlan.

Complex Regional Pain Syndrome (CRPS) is just what it name implies—complex. It’s not easy to diagnose, family practice and emergency room physicians don’t see a lot of it—and often time it goes undiagnosed for a critically long period of time.

A recent all-day conference at the Bay Area Pain and Wellness Center (BAPWC) in San Jose, California attracted providers and patients from 11 states.

“I think our group of speakers really set out to help patients learn how they can be empowered to overcome CRPS. We spoke a lot about the brain/body connection and how we can use what we know about neuroplasticity to heal our pain,” said Dr. Peter Abaci who is an internationally known pain specialist who founded the BAPWC.

“We dived deeper into things like exercise, guided imagery, and art therapy, and how these approaches lead to positive neuroplastic changes that ultimately help better control CRPS and improve function and quality of life,” he added.

For RSDSA Executive Vice President Jim Broatch, the event, which attracted nearly 200 people, was an empowering and “spiritual” day, as he called it.

“Our seminars provide a lot of hope and are a life preserver to some individuals without social support or familiar support,” Broatch said.  

One major challenge is increasing understanding of CRPS so that more early diagnoses can occur.

“We met a lot of folks from all over the US, and many live communities where CRPS is not really understood or have little to offer in the way of resources,” said Dr. Abaci.  “I think it was helpful for many to realize that this is a widespread problem and that they are not alone. The connections that attendees made with others was one of the real positives of this event. Creating social networks help spread education and ultimately, hope.”

Broatch’s group host at least two seminars in different regions of the country every year to help spread awareness and build networks of providers, patients and caregivers. On September 29, there will be an event in Charlotte, North Carolina.

“We are hosting the seminar a day before our very successful Fight the Flame 5K awareness and fundraising event which has raised over $100,000 for our research fund,” said Broatch.  “We always film the seminars and upload them to the RSDSA of America YouTube channel.

Broatch said the RSDSA tries to convey three very important messages: you are not alone, there is definitely hope, and most importantly, RSDSA, our staff, volunteers, and our Board of Directors are passionately dedicated to helping all those affected by CRPS to improve their lives.  

The RSDSA—the non-profit that has been helping people with CRPS for over three decades—is partnering with the Bay Area Pain and Wellness Center (BAPWC) for an all-day conference to discuss the latest research and state-of-the-art treatments for CRPS.

Authored by: Ed Coghlan

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cdc report was by those in government,who wanting just one out come,that opioids for pain be taken away at all cost’s,its full of half-lies,one sided reports from people who wouldn’t know what real chronic pain was even if it was standing before them,why money,their’s a-lot of money being made off your suffering,dieing,whats worst is they make you feel like your the cause’s,its called brain washing,i went to the hospital talked to an what i call a real pain nazi i told him i was in very great pain,he said i was in opioid with draws,hasn’t took any blood or drug test,and since i was being treated since 2003 for very great chronic pain,he said not me i’m not going to opioids to take because you’ll take them by the hand fulls,excuse me i’ve been given rx opioids pain medication since 2003 never has a doctor order me to take them by the hand fulls,one man being operated on woke up because he was in so much pain from not having enough rx pain medication’s in his system,i’m telling you don’t these people fear the LORD for torturing person and at the same time doing every shame based thing by calling them drug addict’s,while have all the prove to show its true,its not opioid crisis’s its a pain nazi crisis’s,its shameful that those doing this its not to help people but to make a whole lot of money off lie’s while killing you,while trying to make you feel like an drug addict to want pain medication that will give you your life back,this has made america’s medical personal look like hitler ss troop’s,this ids why hitler in hell now,and i tell you their going to be judged,and if they have this great sin on them torturing and murdering their disabled older america’s hitler going to be mad he will no longer be the most evil person in hell,if the nazi boot fit’s its your.

Patricia May

Dear Sharon C.

You are correct. What helps with pain: OPIODS
However, every medication that made for a fairly happy life has been taken away because of other people’s abuse. And we are being sentenced to misery. It is unfair and is [edit] up!
I have horrible migraines and Fioricet was a wonder drug. It has a small bit of barbiturate in it, so my doctor decided NOPE. She lied and told me the DEA made her take it away.
Of course DEA pulled an Opioid dosage out of the air and said 90 morphine units is maximum. My doctor has me down to 100, but she wants to take me down below 90. I am going to suggest she just shoot me. Seriously.
I suffer bad tremors and uncontrolled movements. I also have horrible anxiety attacks. I’ve been on Klonopin (long-acting Xanax) since 1995. (benzodiazepine). Well the kiddos are getting high on that too so the DEA said no, no, no!! So my last visit with my Neurologist she cut my dose by 1mg. I am really starting to lose my mind. I’m only 62 and don’t want to take my life. But now I am anxious, walk around my house in sunglasses (headaches and light and noise don’t do well together), my sleep schedule is off, and my mood is BAD.

I posted earlier on what helps me. I am wanting to try medical marijuana (although it used to give me panic attacks years ago, but they have different strains now). I need my uncaring doctor to tell me when I’m getting drug tested so I don’t get kicked off my pain contract. If I ask her nurse she may be able to tell me. Beyond that I don’t know what else to do. I’m a Buddhist so at least that helps me some… And this site is WONDERFUL. Thank you Ed and everyone else who helps!

Sigh…

Terry

I absolutely agree 100% with Jan Poole, what a crock of you know what. The only thing that ever helped me was opioids. It’s time to face the reality CRPS brothers and sisters, our lives are gone and we’ll never get them back again!!!

Sharon C.

Dr. Abaci, do you really believe exercise and art therapy lessen the pain from CRPS? That would be laughable if it weren’t so tragic. Not only does exercise not help my CRPS, it actually makes me feel worse. I also tried working with a certified art therapist, but that certainly didn’t help either. But there is something that does control my pain, bringing me down from a 9 to 10 to a 2 or 3. Yes, Dr. Abaci, the only thing that brings me relief are OPIOIDS. Instead of advocating for smoke and mirrors, doctor, help CRPS patients obtain what really helps.

Patricia May

I’ve been on disability since 2003. Over the years I’ve had tons of things to I’ve tried to deal with my pain. I now get massages (deep tissue and neuromuscular), my son says just ask for a hard Swedish. My tension goes to knots all in my trigger (attachment) points. Releasing these stress balls as I call them, is essential to living with my pain. I get massage every 2 weeks, I used to go more often. Since I have Medicare I have Silver Sneakers card (free gym membership). I found a yoga stretching class, and I like the bike and using light free weights and the floor mat and ball.

I just discovered adult paint by numbers kits for about $21! My husband, a former artist, had 2 strokes so I thought he may enjoy this; me too. I think we do what we can to stay a little busy to distract from our pain.

Oh I buy ice packs from the camping dept at the sporting goods store. Have a heated throw which covers a lot more areas than a little heating pad. A 4 inch foam mattress cover to go over our pillow top mattress. Travel is hell, the beds hurt. I have a twin air mattress to bring when I can. It’s soft and pretty cozy.

To sleep 1 ambien (6.5 mg ER), 10 mg Melatonin, 1 Amitriptyline, 4 triple magnesium pills. Most nights I sleep very sound. For the men, I suggest pumpkin seed oil, 1000 mg at lunch and 1000 mg at dinner. Helps with the nighttime peeing. Don’t know how to help us women with that.

I wish you all relief.

I hope it’s okay we post what helps us? If I should post this elsewhere let me know.

Jan Poole

I have had CRPS/RSD for 19 years due to a crush injury to both feet and legs. I have been on everything and then stabilized on 150 McGill Fentanyl patches every 48 hours. This is know as the SUICIDE Disease because it’s the highest rated pain on the McGill Pain Index.

The only way I can describe it is if someone poured acid on you, the burning is that agonizing! So when I hear some so-called famous pain specialist mention that exercise, guided imagery, and art therapy can better control and improve function, I think AM I LIVING IN AN ALTERNATE REALITY???? REALLY????

f that has helped anyone then they don’t have CRPS! It’s another diversion because NO DR. WANTS TO PRESCRIBE OPIOIDS — THE ONLY THING THAT ALLOWS CRPS PATIENTS TO LIVE and FUNCTION!

I f they are raising $100,000 for things like this, what a waste of money. If the money is going to awareness and provide networks then great, but if it’s just for a one-time feel good experience, that’s a pretty expensive “high” no pun intended.

Cheri Furr

I would love to attend the conference in Charlotte, NC! My daughter and her family live there. Can you tell necthe location in Charlotte and let me know how I can attend? I have had RSD/CRPS for 18 years.

Debbie Gray

Are my comments being received ? Thank you.

Paula Sorrentino

I’m looking forward to the next event in September. I have been living with RSD for 18+ years and am always looking for new ways to fight this disease.