Short but Inspiring Stories

Here are some inspiring stories about others with RSD and what they have done with their lives after they were diagnosed.  

Brittany Dawn Brannon, current Miss Arizona USA, also suffers from pain because of her RSD. As a child, she was a natural on the dance floor, and ballet was her passion. She had big dreams of New York and the American Ballet Theater. Soon after she was accepted to her dream school she suffered an injury in her dance class and needed immediate surgery on her foot. During surgery her nerve cords were damaged, causing her excruciating pain. Brannon was told she could never dance again. Although depression and anger kept the Miss USA contestant down for the first part of her recovery, she soon found her drive to start a new life and work with her pain to better understand it. Brannon found pageants to be her outlet and won Miss Arizona Teen America in her very first pageant.


Ayala is a wonderful, resilient young lady living near Ottawa. During the first minute of a floor hockey game at school when she was 10 years old, she was hit with a slapshot of the puck to her knee, which was the trigger to her RSD. Ayala and her family has had a roller coaster ride, like many other children and adults, with finally getting the proper diagnosis, searching for the best available treatment, and in receiving understanding from her peers and relatives.

Aya is rising above her pain, and has dedicated herself to creating a web site with a positive outlook that leaves visitors to her site with a sense of hope and inspiration. Her site, has brought attention to and created a greater awareness of RSD through interviews in major Canadian and local newspapers and CBC Radio.

Ayala plans to update her site and is the midst of compiling and writing a book of poetry and songs (as well as a novel in the works!) and intends on using its proceeds toward RSD research.

UPDATE April 2002: Ayala Ravek will be receiving the Ontario Junior Citizen of the Year Award in April from the Lt. Governor of Ontario .Congratulations Aya!!! We are very proud of you!

UPDATE June 2004: Canadian Living Magazine features "HEARTBEATS" with a photo and article about Ayala and her fight against CRPS.

Toronto Star June 3, 2004 Section G: features Ayala and her story on CRPS. You may be able to find it online at www.thestar.com and search by subject.

As Aya likes to quote, "Positive thinkers feel the intangible, see the invisible, and achieve the impossible."

UNSUNG HERO

         For many years, Eric has been a well known crusader for RSD/CRPS. Based in Massachusetts, Eric has sent out information, contacted, and arranged for medical assistance for countless people around the globe. At the International RSD Foundation, he quietly works behind the scenes to help those with RSD get the help they need.

His tireless efforts have resulted in three excellent RSD conferences in 1995, 1997 and 2000. He coordinated the Winter Medical Conference (Nov.30-Dec.2,2000) in Orlando, Florida. A year and a half in preparation, the conference was well attended by 160 patients and 68 professionals. It was well organized, informative and of great benefit to both doctors and patients. Eric is also assistant to Dr Hooshmand, a well known neurologist who treats RSD/CRPS patients. Dr Hooshmand has since retired but Eric continues to help patients.
We wish to acknowledge Eric's many years of hard work to promote awareness, educate the medical community, assist patients and promote research even though he has longstanding RSD. Eric is proof that having RSD means one can still accomplish great things. He continues to be an inspiration to us all.
UPDATE: 2010
Eric is walking again after a long road of rehabilitation. Your dream came true, Eric!

 Canada has P.A.R.C. - Promoting Awareness of RSD/CRPS in Canada. In 2008, PARC sponsored Dr. Shulman's (a Toronto area pain specialist) RIDE TO CONQUER CRPS, a cycling marathon from Toronto to St. John's to promote public awareness of RSD.

kim

I got RSD in July of 1992

and was diagnosed a

year later. I’m 42, and by the grace of God I am still working. I

use arm crutches to get around when I am outside of my home

or at work so I don’t fall. I used to hate them, but now they are

my buddies, my friends. I’ve come to look at getting RSD as a

blessing in many ways. This may sound nuts to some of you,

but there is a very good reason. I have made some of the best

friends that I will ever have in my life since having RSD and I

have met the most wonderful people since having RSD. People

that I truly learned from and who changed my life.

louise

February 17, 1992 started

out like any other

day. I got up and got ready for work, got my daughter ready

for school and then drove my 30-mile trip to work. The

assembly area where I worked was totally automatic and had

robots. This particular morning, I had some small parts that

were sticking in the track and I had to go to the back of the

machine to fix it. As I was coming up to a standing position,

I struck my left knee on a metal bracket that was located on a

support leg of the conveyor belt and I saw black for the first

few seconds. As I got myself together, I took a step and the

pain was so great that it felt like I was going to be sick of my

stomach. So began my journey with RSD.

I was fortunate that I didn't have to go to many doctors before

I was diagnosed. It wasn't long after that my doctor suggested

I attend the RSD Support Group. I was afraid to go at first,

because I was a little afraid of what was happening to my own

body. Going to the support group was one of the best decisions

I’ve ever made. It was good to be around others who knew

where I was coming from.

It seems like from the beginning, my RSD was a magnet

for others who had RSD. I started meeting people who had

RSD just about everywhere I went. I would invite them to the

support group meetings. My time working was also coming to

an end, and I started using the skills I formerly used at work in

the support group.

In November 1993, I became the new director of the Greenville

RSD Support Group. It was just what I needed to work on living

with RSD. I had viewed RSD as ruining my life, because I

couldn't do the things that I use to before. When I did things on

a fairly good day, I would over do it and pay for it for weeks. It

finally dawned on me that this was what my RSD liked. It also

liked when I was down. This discovery was an important part of

acceptance for me. It taught me that it's okay to make changes if

it allows me to do what I want in life. I started setting priorities

in my life. I realized that it wasn't how I accomplished my goal

that mattered, but that I accomplished it.

RSD also brought out my

fighting spirit. Everyone

I met would say, “I have

never heard of that.” I

wanted that to change,

so we ended up forming

the South Carolina RSD

Association (SCRSDA ).

We made our mission to

help educate everyone we

could about RSD. Our

first conference was held

in September 1994, and

has been held annually since. Running the support group and

SCRSDA have been like therapy for me. I have a strong support

system of folks that help to keep me going. I will never give up

working on myself or my RSD. So that is why I say, "I have

RSD, but it Doesn't Have Me".

Remember

Find an inspiration.Don’t isolate yourself.Volunteer. Reach out to otherFinally, believe in yourself

Entry 3

In mid-July the details in my medical records was beginning to get quite lengthy and was starting to fit with what I was telling the doctors. I also started my PT (physical therapy) and to get started was a FCE (physical performance testing) test and damn if I didn’t take more Norco than prescribed that day. Lol! The next appointment was next week and it was with Dr. Rib. for the results of my MRI.

Dr. Rib. told me that for the most part the MRI didn’t show anything that was causing pain and no fractures either. After I received the records for the MRI, I looked over them and there was more information on it than what the doctor told me. This was a minor details that I failed to investigate further as I had a lot to handle with the RSD issue. I visited Dr. Rib. twice that month because the MRI report was incomplete at the first visit. My next appointment was with the referred doctor from Dr. Rib. and this doctor was a pain management clinic and his name was Dr. Stan. I was supposed to be looking forward to a procedure called a SGB!

Doctor Stan. was a very thorough, informative, and seemingly caring doctor. He is the type of doctor everyone wants to go to. He went over every detail over what I could expect in the future and the possible treatments of RSD. Then we went over the procedure (SGB (Stellate Ganglion Block)) he wanted to try and how it might help and what is done during the procedure.  At the time of this appointment I was not taking the Lyrica prescribed to me because I was driving heavy duty truck and equipment as part of my light duty and I was told that when you first start taking it that you shouldn’t drive. I was waiting for a couple of days off work but that hadn’t happened yet.

            I was very nervous about the SGB because of all the dangers and how it was performed. I am a very cautious person when it comes to going to a doctor anytime let alone someone sticking a needle in the neck and injecting something in an area that could permanently damage nerves. Yes I was being a coward! I am the type of person that their blood pressure and heart rate go thru the roof just for a check-up. LOL

            When I told Dr. Stan. how nervous I was he suggested that I begin the Lyrica for a couple of weeks to see if I improved any and if not then we would proceed with the SGB and I agreed with him. He seemed disappointed but also very understanding about my nervousness. He told the safety officer with me that the employer that they had to give me at least 3 days for me to get used to the medication to make sure I could drive with the medication. He also told him that if I could not drive under the medication that they would have to accommodate another light duty position for me.

            I was set for the next appointment with him at the end of August and to go back to my other doctors until then. I was very impressed with Dr. Stan. and would recommend him to anyone in the Dallas/Ft. Worth area for pain management!

            On that same day I had an appointment with Dr. Rib. again to go over what Dr. Stan. and I discussed. He was disappointed that I had not gone thru with the SGB because he had told me that he thought all my problems would be over with it. I had researched RSD and SGBs by this time and how it was not a cure for RSD but it could give short or long term relief. I was looking forward to some kind of relief but I thought I would try meds over procedures or operations.

            In the middle of August I had an appointment with PA Schul. And during this appointment I discussed what happened with the MRI and with Dr. Stan.. Every time I went to another doctor I passed all the records to the WOL Clinic so they could review what the company doctors were up to. I was also on the Lyrica and getting some relief from the “pins and needles” feeling and pain. Of course I was encouraged that it was starting to work and maybe it would hold off the SGB.

            I had also come up with the theory that my high blood pressure was not only caused by the pain but also from the constant stress from my employer, having RSD, and the planning of appointments and hours I was working. Now that I am not dealing with the employer, lawyers, and constant doctor visits my blood pressure is leveling out. It is high on my bad days but for the most part it is good. I am still on meds for it but that is me being cautious I guess. The other part of all this problems is that for the most part I have gotten over the anxiety of going to routine doctors. I am grateful for that I promise!

I  think that I may have the audio problem out and going to try it out for entry 4.

Thank you all for your support!!!!

David

My Journey with RSD - Entry 2

Well scratch the audio version of my entry; I can’t get the audio work so I will have to try again later.

For the past week I have been digging thru what seemed like Pandora’s Box looking for visits to doctors. This was a major feat due to my lawyers lack organizing skills and I thought I did pretty good job keeping thing straight but I was half ass also. I guess with all the stress just made me think I was better at it than I was. I kept any and every piece of paper I got during the suit and placed them into folders but without order(oops). This also opened up old wounds that I was finally getting over, like the anger that I had at my job and their insurance company.

I hadn’t opened the box but just once since the suit was over and that was just to get a copy of my medical records for my current doctor and didn’t look then just grabbed one of the envelopes the lawyer sent me. So any ways here is the next entry……

Entry 2

Ok I got hurt on May 20^th and took a few days off but then it took until June 4^th before I started to see the company doctor. I saw P.A. Tan. three times during the month of June. All three time he diagnosed me with Carpel Tunnel Syndrome. The treatment was 2 wrist splints (one I had to pay for) and aspirin or Tylenol only to have him tell me that the splints were making the injury worse and I shouldn’t wear them, like the splints were my idea (ass). I had told him before that the splints hurt severely but I was wrong and he was right, and after the 3^rd visit he referred me to Ortho Dr. Rib. Mind you, I never got an X-Ray or any other test besides him twisting and poking the area that hurts. After this I decided to get my own doctor and happen to schedule their new doctor with my doc the same day.

During the time between to upcoming visits my employer decided that I need to try to get back on full duty since PA Tan didn’t say otherwise even though I had been on light duty before. In between my first three visits my employer kept pressuring me to get back to regular duty with the splints on since they protect my hand and even after my protesting when trying to use the hand. By my employer I mean my direct supervisor. If a little thought had gone into his actions instead of just being a dick, had my injury only be temporary, the use before healing only prolongs the time of being on light duty (duh). This guy was a constant pain throughout this whole journey and he even continued talking about it after I was no longer with the company. I did hear the guy is still in the same position since I left hmmm wonder why.

Towards the end of June I visited Dr. Rib. and guess what, the first thing was an X-Ray then I saw the doctor, and after seeing him he scheduled an EMG. Wow two procedures scheduled or performed on my first visit. He was a very good about going over everything and listening to me about where and what made the pain worse. The one main thing that I noticed about the doctor’s dictation was that in one section he notes that there was sweating in my hand but in another section he notes not sweating. Some doctors I swear need to pull their head out but I guess with a good thing he needed to counter it by putting contradictory notes.

On the same day I visited the doctor’s clinic I found during work one day. I first saw a PA for the first several visits which bugs the hell out of me. I believe that when someone goes to a clinic or office the first visit or 2 you should see the doctor then maybe see the PA. Nothing against PAs but I go to Dr. “Such N’ Such” to see that doctor not to see PA “So N’ So” and makes a new patient feel unimportant. Ok back to my visit at Dr. Wol.’s clinic to see P.A. Schul.  

I received the common poke and prod of any doctor and the questionnaire I also had another X-RAY P.A. Schul. Prescribed Naproxen, back on light duty, and put in the request for Physical Therapy. His diagnosis was pretty much the same as Dr. Rib. Which was crush injury, hand and wrist derangement and possible Carpel Tunnel but Schul. wasn’t quite for sure what else to put down or the extent of the injury.

July rolled around and first on the list was an EMG that supposedly showed nothing. I say supposedly because I watched some adjusting happening to the results by the technician. This just helped my insecurity of thinking about how my employer was putting pressure of these guys to get me back to work. My employer sent someone with me every appointment I went to but, with my doctor they never showed up.

My next visit was to see Dr. Rib. And get my EMG official results and for a follow up. Sweat was present again and my complaining of the pain still. After talking about problems I was having he said that he was inclined to say I had RSD but not too worry because it is fully treatable and curable but until it was contained I would be uncomfortable. (Don’t know what he was thinking) He told me my next test was a MRI and he was sending me to see another doctor for a SGB. His official written diagnosis was crush injury and traumatic carpel tunnel nothing about RSD.

That same day I went to see P.A. Schul. for a follow up and discussed all my issues again. Repeating everything over and over even the same day is something that is tiresome but also you kind of get used to doing. Light duty was to continue but higher restrictions because the weight limits and time was too hard for me. He also prescribed Lyrica and a light dose of Norco. My PT had been approved and started the next week.

Mind you I had to drive at least half my day getting to and from work during my job and doctor visits but that was no concern to my employer.  When I first began my meds I had a few problems driving but I had to or worry about repercussions from my boss. This does become a major problem later on because I pushed the issue. That comes later.

Thanks for your support and please send me feedback.

This entry was rushed because I told you guys that I would have it up by now so some of it is jumbled, I apologize for this!

Painkiller sales soar around US, fuel addiction

My opinion is on the bottom of this story in red.
Thanks,
David

By CHRIS HAWLEY | Associated Press

Sales of the nation's two most popular prescription painkillers have exploded in new parts of the country, an Associated Press analysis shows, worrying experts who say the push to relieve patients' suffering is spawning an addiction epidemic.

From New York's Staten Island to Santa Fe, N.M., Drug Enforcement Administration figures show dramatic rises between 2000 and 2010 in the distribution of oxycodone, the key ingredient in OxyContin, Percocet and Percodan. Some places saw sales increase sixteenfold.

Meanwhile, the distribution of hydrocodone, the key ingredient in Vicodin, Norco and Lortab, is rising in Appalachia, the original epicenter of the painkiller epidemic, as well as in the Midwest.

The increases have coincided with a wave of overdose deaths, pharmacy robberies and other problems in New Mexico, Nevada, Utah, Florida and other states. Opioid pain relievers, the category that includes oxycodone and hydrocodone, caused 14,800 overdose deaths in 2008 alone, and the death toll is rising, the Centers for Disease Control and Prevention says.

Nationwide, pharmacies received and ultimately dispensed the equivalent of 69 tons of pure oxycodone and 42 tons of pure hydrocodone in 2010, the last year for which statistics are available. That's enough to give 40 5-mg Percocets and 24 5-mg Vicodins to every person in the United States. The DEA data records shipments from distributors to pharmacies, hospitals, practitioners and teaching institutions. The drugs are eventually dispensed and sold to patients, but the DEA does not keep track of how much individual patients receive.

The increase is partly due to the aging U.S. population with pain issues and a greater willingness by doctors to treat pain, said Gregory Bunt, medical director at New York's Daytop Village chain of drug treatment clinics.

Sales are also being driven by addiction, as users become physically dependent on painkillers and begin "doctor shopping" to keep the prescriptions coming, he said.

"Prescription medications can provide enormous health and quality-of-life benefits to patients," Gil Kerlikowske, the U.S. drug czar, told Congress in March. "However, we all now recognize that these drugs can be just as dangerous and deadly as illicit substances when misused or abused."

Opioids like hydrocodone and oxycodone can release intense feelings of well-being. Some abusers swallow the pills; others crush them, then smoke, snort or inject the powder.

Unlike most street drugs, the problem has its roots in two disparate parts of the country — Appalachia and affluent suburbs, said Pete Jackson, president of Advocates for the Reform of Prescription Opioids.

"Now it's spreading from those two poles," Jackson said.

The AP analysis used drug data collected quarterly by the DEA's Automation of Reports and Consolidated Orders System. The DEA tracks shipments sent from distributors to pharmacies, hospitals, practitioners and teaching institutions and then compiles the data using three-digit ZIP codes. Every ZIP code starting with 100-, for example, is lumped together into one figure.

The AP combined this data with census figures to determine effective sales per capita.

A few ZIP codes that include military bases or Veterans Affairs hospitals have seen large increases in painkiller use because of soldier patients injured in the Middle East, law enforcement officials say. In addition, small areas around St. Louis, Indianapolis, Las Vegas and Newark, N.J., have seen their totals affected because mail-order pharmacies have shipping centers there, said Carmen Catizone, executive director of the National Association of Boards of Pharmacy.

Many of the sales trends stretch across bigger areas.

In 2000, oxycodone sales were centered in coal-mining areas of West Virginia and eastern Kentucky — places with high concentrations of people with back problems and other chronic pain.

But by 2010, the strongest oxycodone sales had overtaken most of Tennessee and Kentucky, stretching as far north as Columbus, Ohio and as far south as Macon, Ga.

Per-capita oxycodone sales increased five- or six-fold in most of Tennessee during the decade.

"We've got a problem. We've got to get a handle on it," said Tommy Farmer, a counterdrug official with the Tennessee Bureau of Investigation.

Many buyers began crossing into Tennessee to fill prescriptions after border states began strengthening computer systems meant to monitor drug sales, Farmer said.

In 2006, only 20 states had prescription drug monitoring programs aimed at tracking patients. Now 40 do, but many aren't linked together, so abusers can simply go to another state when they're flagged in one state's system. There is no federal monitoring of prescription drugs at the patient level.

In Florida, the AP analysis underscores the difficulty of the state's decade-long battle against "pill mills," unscrupulous doctors who churn out dozens of prescriptions a day.

In 2000, Florida's oxycodone sales were centered around West Palm Beach. By 2010, oxycodone was flowing to nearly every part of the state.

While still not as high as in Appalachia or Florida, oxycodone sales also increased dramatically in New York City and its suburbs. The borough of Staten Island saw sales leap 1,200 percent.

New York's Long Island has also seen huge increases. In Islip, N.Y., teenager Makenzie Emerson says she started stealing oxycodone that her mother was prescribed in 2009 after a fall on ice. Soon Emerson was popping six pills at a time.

"When I would go over to friends' houses I would raid their medicine cabinets because I knew their parents were most likely taking something," said Emerson, now 19.

One day she overdosed at the mall. Her mother, Phyllis Ferraro, tried to keep her daughter breathing until the ambulance arrived.

"The pills are everywhere," Ferraro said. "There aren't enough treatment centers and yet there's a pharmacy on every corner."

The American Southwest has emerged as another hot spot.

Parts of New Mexico have seen tenfold increases in oxycodone sales per capita and fivefold increases in hydrocodone. The state had the highest rate of opioid painkiller overdoses in 2008, with 27 per 100,000 population.

Many parts of eastern California received only modest amounts of oxycodone in 2010, but the increase from 2000 was dramatic — more than 500 percent around Modesto and Stockton.

Many California addicts are switching from methamphetamine to prescription pills, said John Harsany, medical director of Riverside County's substance abuse program.

Hydrocodone use has increased in some areas with large Indian reservations, including South Dakota, northeastern Arizona and northern Minnesota and Wisconsin. Many of these communities have battled substance abuse problems in the past.

Experts worry painkiller sales are spreading quickly in areas where there are few clinics to treat people who get hooked, Bunt said.

In Utica, N.Y., Patricia Reynolds has struggled to find treatment after becoming dependent on hydrocodone pills originally prescribed for a broken tailbone. She said the nearest clinics offering the rehabilitation programs she wants are full and not accepting new patients.

"It's a really sad epidemic," Reynolds said. "I want people to start talking about it instead of pretending it's not a problem and hiding."

___

AP Interactive Graphic: http://hosted.ap.org/interactives/2012/painkiller-nation/

Associated Press interactive producers Phil Holm and Michelle Minkoff contributed to this report.

What most people don't realize is that not everyone taking these pills are addicts or out of control! Some of us really need medications to function throughout the day and wish there was another way to handle our chronic pain. For me, trying to find a doctor that would give me pain medication was a pain in the a$$, but I didn't go fishing around to find them. These people that find doctors that give them large amounts of pain meds and keep finding many them must be very determined or down right lucky I guess. I have seen over 8 different doctors since my onset of RSD and I only found 2 doctors to give me pain meds. The first gave me a really small doses and never increased the dose even after I told him that it didn't help and talked about taking me off of the meds. These recreational and out of control users need to realize that they are hurting not just themselves or their family members but they are also hurting the people that really need the medicine.

Don't forget to follow us thru email or becoming a member of this blog. Thank you for your support.
David

Asteroid 2012 Da14 will miss the earth

Asteroid 2012 Da14, the rock that is causing panic to earth’s doomsayers, will definitely miss the earth, says NASA. Not a chance. Calculations speculate that the asteroid will miss Earth by 1.5 millions miles, or about six times the size of earth.
Asteroid 2012 Da14 is a medium sized asteroid that astronomers estimate to be 150 feel across. The rock is set to come in close contact, again no chance of hitting earth, in February 2013. And, who knows if it’s the bad weather or the Mayans 2012 prediction of earth coming to end that has made Asteroid 2012 Da14 more of a media spectacle making the threat out to something its not.
"One problem is that the Internet is wide open to anyone to say anything," Yeomans told Life's Little Mysteries, he continued, "In the case of this asteroid, you get hundreds of hits on the Internet, and in the case of the 2012 Mayan calendar business, millions of hits suggesting disaster. And you get a few folks in the media and at NASA who put out the truth. But people go online and see millions about disasters and a few saying 'no disaster' and they think, well, the majority of these say I should be worried.”
There’s bogus news tabloids all over the internet, some mumbo jumbo prediction dated back thousands of years, or there is science, by little organization named NASA. This author trusts the latter.
With so many sources of information Yeoman says, "The hope is that people will understand that we are the more trusted sources of information.”
Although Asteroid 2012 Da14 will miss, this does not rule out the threat of an asteroid in the future smashing into the planet. What wiped out the dinosaurs 65 million years ago could still pose a threat to humanity, and astronomers say, it is only a matter of time before another one of these space rocks is successful hitting earth.

Entry 1 - My Jouney With RSD

Well here’s Entry 1 of my story

                In 2009 I was working in the oil field in water transfer area. We were working a job on an afternoon in May laying the pipe used to transfer water to the frack tanks. We unload the pipe off a trailer being pulled along as the pipe hits the ground usually alongside a road. As the pipe stack gets lower a person must pull stakes from rails that support the pipe on the trailer and these rails come in three stakes which make up the rails and all of them are connected by short chains.  On May 20^th I was at the rear rail as we were headed down a paved road and I pulled the first stake off the rail. As I pulled the stake free, my foot slipped off the pavement and my hand did not clear as the stake swung down like a pendulum that smashed its corner into my hand and the side of the trailer.  That night I just went home assuming that I just had bruised the muscle nothing else, but after I got home my thumb and center of my hand turned green and swelled up two to three times its normal size. I texted my boss about taking the next day off because I had hurt my hand that day (he had been next to me when it happened).  

I am re posting this to get back into the rhythm of writing about this. Next post will be in a day or 2 and might be audio instead of typed words. If you want to hear more let me know, I ask this because I don't want to bore you guys. lol

Story of My Journey Thru RSD

A little info before I get started;

I am going to fill in some blanks about me and my RSD. I am going to start from the accident that caused my problem. I am not a person that shares my problems or issues and they only people that know my story is my mom, wife, one friend, my ex employer, their insurance and my attorney. So you guys are getting something that most people in my life don't know. Here goes nothing....

Well a new start to an uninviting situation of my Internet being down on the eve of getting an organization put together. I ended 2011 on a bad note not seeing any of my family during the holidays due to financial difficulties and ran out of all my meds about the 15^th of October. I was feeling quite good about this blog page as the views were getting higher and higher, so some of my pain was relieved. A great sense of happiness came over me knowing that I could be helping and or comforting people like myself. The New Year is looking better with the blog and being back on most of my medicine plus a few extra. I am not currently on my main pain meds (can’t afford them) tho!!! In the coming days I will be covering my back story to help fill in some of the blanks of my situation. I want to thank each and every one of you that have supported me, my journey through this illness, and this blog page.

I know I promised this a long time ago, but I got caught up in a new project so this one got put off a little. hopefully I am back on track. lol

David

Prescription Help

If you are needing help with your meds, check this list for the company that makes your meds. I have listed a phone number for the companies but some are for refills but you can ask for the department that gets you into the program.

• Abbott Laboratories 1-800-222-6885
• Astra Zeneca - 1-800-424-3727
• Aventis Pharm. 1-888-632-8607
• Biovial Pharm. 1-866-268-7325
• Boehringer Pharm. 1-800-556-8317
• Bristol Myers Squibb 1-800-736-0003
• Centocor 1-866-489-5957
• Dermik Lab. 1-866-268-7326
• Duramed 1-800-425-3122
• Eisai, Inc 1-800-226-2072
• EliLilly - Lillycares 1-800-545-6962
• Express Scripts - RX Outreach 1-800-769-3880
• First Horizon 1-800-869-4514
• Forest Pharm. 1-800-851-0758
• Glaxo Smith Kline 1-866-728-4368
• Johnson & Johnson Pharm. 1-800-652-6227
• Merck/Schering-Plough 1-800-347-7503
• Novartis 1-800-277-2254
• NovoNordisk 1-866-310-7549
• Pfizer (Neurontin) 1-800-707-8990
• Proctor & Gamble Pharm. 1-800-830-9049
• Reliant Pharm 1-866-792-2737
• Sankyo Pharm 1-866-268-7327
• Sanofi Aventis 1-800-221-4025
• Schering Lab - Commitment to Care 1-800-521-7157
• Schering Lab - SP-Cares 1-800-656-9485
• Takeda Pharm 1-800-830-9159
• Tap Pharm 1-800-330-1015
• UCB 1-800-477-7877
• Wyeth Pharm. 1-800-568-9938

I have not verified these numbers(Pfizer does work) but if you do find one that doesn't work or the company does not offer help anymore let me know so I can change the list. I got this information from a local community help organization.

Thanks

Have a good week!!!!

Some Support Groups for RSD/CRPS, Listed by State

Alabama

There are currently no support groups in Alabama.

Check surrounding states for support groups: Florida, Georgia, Mississippi,Tennessee

Find an online support group here.

Alaska

There are currently no support groups in Alaska.

Find an online support group here.

Arizona

North Phoenix

New Group

Contact: Leslie Glassman, Tel: 623.247.3746, les-mike@cox.net

Phoenix

RSD Care and Share Support Group of Phoenix

Meets 3rd Saturday, 1:00 pm
St. Joseph's Medical Center, 3rd Ave and Thomas, Phoenix

Contact: Margie St. Pierre, Tel: 602.843.2412, mjstpierre1@yahoo.com

Tucson

RSD Care and Share Support Group of Tucson

Meets 2nd Saturday, 3:00 pm
Masonic Lodge, 3959 East Mabel (near Alvernon & Speedway)

Contact: Rhonda Smith, PO Box 1677, Cortaro, AZ 85652
Tel: 520.579.5511, tucsonrsd@yahoo.com, www.tucsonrsd.blogspot.com

Yuma

James Newland would like to start a face-to-face support group in Yuma. If interested in attending, please e-mail James.

Contact: James Newland, jknewland@msn.com

Arkansas

Batesville

New Group

Contact: Shelia Hall, sheliaann@rocketmail.com

Little Rock

New group

Contact:Debbie, brink@ipa.net
Tel: 501-851-3807

California

Cupertino

New Group

Contact: Brenda Eldridge, brendaeldridge@comcast.net (put CRPS in subject line)

Highland

Meets second Thursday of each month

Contact: Patti Rosario, pattierosario@sbcglobal.net (Rsd support Group - in subject line) 

You can also visit their website here

Lancaster

Meets Wednesdays, 4:00 pm to 7:00 pm

Contact: Mary, Tel: 661.723.5713

Pasadena

Design for Living

Meets 4th Saturday, 4:00 pm to 5:30 pm
Lake Avenue Church, 393 N. Lake Ave, Rm 202, FLC (Call for directions)

Contact: Dana Gambill, Tel: 626.755.0105, designforliving@earthlink.net

Paso Robles

Mail and Phone support only

Contact: Kathy Barnett, 383 Quarterhorse Lane, Paso Robles, CA 93446
Tel: 805.238.5044

Roseville

Roseville RSD Support Group for Veterans

Contact: Sabino Deodanes
http://web.me.com/sabino11/Web.Me.com_sabino11_RSD/

San Francisco/Bay Area

New Group

Contact: Tom, Tel: 650.296.3221, tomcrps@gmail.com

Santa Rosa

New Group

Contact: Allegra, asativa43@gmail.com

  

Colorado

Englewood

Rocky Mountain CRPS/RSD

Contact: http://www.rmrsd.org

  

Connecticut

Branford

Barbara is facilitating a chronic pain support group at the Guilford Women & Family Life Center (Men welcome)

Alternate Sundays 4:00 to 5:00 pm

Guilford's Family and Life Center (Tel: 203.458.6699)
96 Fair Street, Guilford CT

Contact: Barbara, Tel: 203.481.7398, s21@snet.net
Barbara cannot return toll calls.

Bridgeport

Phone Support Only

Contact: Minkie, Tel: 203.373.7767

Brookfield/Danbury

CT Pain Foundation, Inc.

Meets weekly

Contact: Paul Gileno, 115B Commerce Drive, Brookfield, CT 06484, Tel: 877.271.1209, Tel: 203.775.6331, info@ctpainfoundation.com,www.ctpainfoundation.com

Norwich

American Chronic Pain Association #664

Contact: Rita Ammons, 1 Pacemaker Ave., Norwich, CT 06360, Tel: 860.822.1082, ritaammons@hotmail.com

  

Delaware

State-wide

Phone Support Only

Contact: Gerry McLaughlin, Tel: 302.504.0663

  

District of Columbia

There are currently no support groups in the District of Columbia.

Check surrounding states for support groups: Delaware, Maryland, Virginia

Find an online support group here.

  

Florida

Coral Springs

RSDExtremity

Meets Last Thursday, 6:30 pm to 7:30 pm
3100 Coral Hills Drive, 1st Floor, Conference Room A & B
Adjacent to Coral Springs Medical Center
(Call 954.344.3344 for directions)

Contact: Susan or Michelle, RSDExtremity@yahoo.com

Daytona

Northeast Coast of Florida RSD Support Group

Contact: Linda Cohn, Lindsay Heffron, or Janet Tedder, Tel: 386.673.0871,leeorlinda@bellsouth.net

Jacksonville

North Florida RSD|CRPS Support Group

E-mail Support Only

Contact: Tanya Kee, nfrsdsupport@aol.com

Lake City

New Group

Contact: Jessica Velez, Tel: 386.344.5333, jvelezrsdsg@bellsouth.net

Lakeland

Phone and E-mail Support Only

Contact: Karen McManus, Tel: 863.838.0223, polkrsdgroup@tampabay.rr.com

Miami Lakes

New Group

Contact: Maggie, Tel: 305.502.9595, imaginemiami@yahoo.com

Orlando

Orlando RSDS/CRPS Support

If you live in the Greater Orlando are and are a CRPS patient and/or are a loved one, caregiver, friend of a patient, and would like to be involved with our group, or would just like to come on by and talk with us, drop us a line with your contact information.

Contact: Jason Bingham, Tel: 407.234.4243,orlando.rsds.crps.support@gmail.com

Palmetto

New Group

Contact: Lana Baus, Tel: 941.592.1968

Panama City

Contact: Carmen E. Everhart, 3919 Becora Ct., Panama City, FL 32405,
Tel: 850.265.3463, cever15741@yahoo.com

Pinellas County

New Group. RSD Support Group.
The group meets the second Saturday of each month at 10:30 am at the Pinellas Park Library.

Pinellas Park, Florida

Contact: Nancy, Tel:727-546-9319

Vero Beach

RSD Support Group of the Treasure Coast

Phone Support Only

Contact: Liz Radloff, Tel: 772.778.2777 (10:00 am to 10:00 pm),Lizrsd1@comcast.net

Winter Haven

Contact: Barbara, rsdcareintl@aol.com

  

Georgia

Atlanta

New Group

Contact: Lucille, Tel: 770.252.4665, a80wife@aol.com

Rome

New Group

Contact: Felechia, Tel: 678.685.4429, feliceshreewil2@msn.com

Hawaii

Kailua-Kona

RSDS|CRPS Association of Hawaii RSDSA

Contact: Tina Mohr, LMT, 73-4787 Halolani St. Kailua-Kona, HI 96740,
Cell: 808.960.0918, Fax: 808.325.0370, tina@protourhawaii.com

Idaho

There are currently no support groups in Idaho.

Check surrounding states for support groups: Montana, Nevada, Oregon, Utah,Washington, Wyoming

Find an online support group here.

Illinois

Elk Grove Village

Illinois RSDS Association

Meets 2nd Sunday, 2:00 pm to 4:00 pm
Conference Rooms 1 & 2, Alexian Brothers Hospital, 800 Biesterfield Rd.

Contact: Edwina Schaeffer, Tel: 630.665.0717, edwinaschaeffer@sbcglobal.netor Tim Groark, Tel: 773.582.8051, frogy3@msn.com

Hinsdale

Meets 3rd Sunday, 2:00 pm to 4:00 pm
Lincoln Room, Adventist Hinsdale Hospital, 120 Oak Street, Hinsdale, IL 60521

Contact: Edwina Schaeffer, Tel: 630.665.0717, edwinaschaeffer@sbcglogal.netor Tim Groark, Tel: 773.582.8051, frogy3@msn.com

Hinsdale

Meeting for Children with RSD

Meets 1st Sunday, 2:00 pm to 4:00 pm
Adventist Hinsdale Hospital, 120 Oak Street, Hinsdale, IL 60521

Contact: Edwina Schaeffer, Tel: 630.665.0717, edwinaschaeffer@sbcglogal.netor Tim Groark, Tel: 773.582.8051, frogy3@msn.com

Rockford

Meets 2nd Monday of month, 10:00 am to 11:30 am
Swedish American Hospital, 4th Floor, Rockford, Illinois

Contact: Beth Moore, Tel: 815.247.8885, bethmoore35@hotmail.com

Round Lake

Pain Specialists of Greater Chicago

Contact: Joy Thornborough, 604 Nippersink Ave, Round Lake 60073
Tel: 847.201.8957, joy2u4ever@yahoo.com, www.painchicago.com

  

Indiana

Evansville

New Group

Contact: John Chivalier, Jr., Tel: 812.303.5788, j_chivalierjr@yahoo.com

Fort Wayne

Meetings and phone support. Call for meeting information.

Contact: Mara, Tel: 800.728.2425, askmara@gmail.com

  

Iowa

Decorah

St. Benedict's Parish Offices. Please Call to Register.

Contact: Eva, Tel: 563.380.6672, or Carol, Tel: 563.380.7888

Kansas

KC Metro Area Entire Area

KC RSD/CRPS Support Group

Online, Phone, and Group Meetings.
Meets 1st and 3rd Tuesdays 7-9 PM 

Contact: Lisa Coan, Tel:816.326.7111 (10:00 am to 10:00 pm CST),lisakcoan@yahoo.com

Kentucky

Burlington

Northern Kentucky RSD Chapter

Contact: Alyce F. Rowland, Northen Kentucky RSD Chapter, PO Box 667, Burlington, KY 41005; Tel: 859-586-6180 (If no answer, call 859-743-8204);lifewrsd@aol.com

Deane

Contact: Desta Slone, PO Box 108, Deane KY 41812
Tel: 606.447.2393, rsds@hotmail.com

Leitchfield

South Central KY RSD Support Group

Meets 1st Tuesday, 1:00 pm CT
Eriksen Chiropractic Center
508 Wm Thomason Bwy
Leitchfield, KY 42754

Contact: Carolyn Clemons, 345 Hopewell Rd., Caneyville, KY 42721
Tel: 270.879.4023, cpc345@windstream.net

Louisville

Contact: Carol Dever, Tel: 502.314.2049, edever34@aol.com

Louisiana

Kenner

24/7 Phone and E-mail Support

Contact: Kim, Tel: 504.712.6928, kbellawithrsd@yahoo.com

Monroe

New Group

Contact: Debbie, Tel: 318.387.9645, ducotedm@bellsouth.net

Shreveport

New Group

Contact: Jerry Pond, Tel: 318.222.5573, jpond@bellsouth.net

Sunset

New Group

Available via telephone and and to chat monthly

Contact: Lisa Begnaud, Cell: 337.290.5818

Maine

Harrison

American RSDHope

Contact: Keith Orsini, 5 Stonehedge Way, Harrison, ME 04040-9708,
Tel: 207.583.4589, www.rsdhope.org

Southern Maine

Chronic Pain Support Group

Meets 1st and 3rd Thursdays, 6:00 pm to 7:30 pm
The Pines, 10 Manor St., Old Orchard Beach, ME

Contact: Evelyn, Tel: 207.937.5020, or Jane, Tel: 207.934.4189,supportgroupinfo@gwi.net, www.painsupportgroup.org

Maryland

Baltimore

E-mail support only

Contact: Nancy Carp, imnancee@verizon.net

Warton

Contact: Nancy Ward, Tel: 443.480.9186, snjwards@yahoo.com

State-wide

RSDS Support Group of Southern Maryland Hospital Ctr

Meetings (call for dates)

Contact: Tony Powell, Tel: 301.645.0786, apowell301@aol.com

  

Massachusetts

Abington

Support Group for Children in Pain
For children 6-18 years of age and their families

Meets 1st Wednesday
United Church of Christ, Abington (on Route 18)

Contact: Judy, Tel: 781.871.8803 (9:00 am to 5:00 pm),hopenfaith4ever@aol.com

Arlington

Arlington Chapter of the American Chronic Pain Association
Meetings are free and open to anyone living with chronic pain.

Meets 2nd Friday, 11:00 am to 12:30 pm
Arlington Robbins (main) Library, 700 Mass Ave, In the ground floor Community Room

Click here for a Meeting Schedule

Contact: Cindy Steinberg, leader@arlingtonacpa.org

Mansfield

Phone support (Call between 11:00 am and 5:00 pm)

Contact: Lisa Shea, Tel: 508.339.6064, lisanashshea@yahoo.com

Weymouth

Meets 4th Tuesday, 5:00 to 7:00 pm
South Shore Hospital, Center 2 Classroom

Contact:Carol Sansone, Tel: 781.340.8352

Worcester

Phone support only

Contact: Mary La Bree, Tel: 508.595.0207

  

Michigan

Ann Arbor Area

RSD in Motion: Ann Arbor Area Support Group for Reflex Sympathetic Dystrophy and Complex Regional Pain Syndrome

Click here for complete information

Babysitting will be available during every support group meeting for the next few months! A sitter will be available, free of charge, please contact Jordan if you're interested with what night, how many, and their ages. A babysitter will not be at the group if no one contacts me with this need.

Contact: Jordan Keen, a2rsdcrps@gmail.com

Detroit

Southeastern Michigan CRPS

Meets last Friday, 6:00 pm to 8:00 pm
People Community Church, 8601 Woodward Ave

Contact: Jannie White, Tel: 313.861.6791, (1:00 pm to 6:00 pm),rsddetsupportgroup@sbcglobal.net

Grand Rapids

RSDS Support Group of Grand Rapids

Contact: Sherry and Cliff Mulder, 1259 Diamond NE, Grand Rapids, MI 49505,
Tel: 616.364.4014

Jean Arp, 2446 Eden, SW, Wyoming, MI 49509, Tel: 616. 534.9281

Lake Superior

Ron is starting a new group and would love to connect with others nearby.

Contact: Ron Halsey, Tel: 906.273.0527, mari.maverick@hotmail.com

Parchment

Parchment Community Library, 401 S Riverview Dr, Parchment, MI 49004 
Library Tel: 269.343.7747

Contact: Colleen, Tel: 269.381.2283, colleen.westra@chartermi.net

Republic

Hands Helping Hands

Mail or Phone Support ONLY

Contact: Patti Truckey, PO Box 680, Republic MI 49879, Tel: 906.376.8464,painiacs@yahoo.com

Sanford

RSD Group of Midland

Meets Thursdays, 9:00 am
Lanny's Restaurant

Contact: Paul and Marge Allen, 2826 W. Olsen Rd., Sanford, MI 48657-9630
Tel: 989.835.1766, Cocoapaul70@wmconnect.com

Minnesota

Minneapolis/St. Paul

MN RSDS/CRPS Coalition

Contact: Bonnie Scherer, 3904 Green Heights Trail SW, Prior Lake, MN 55372
Tel: 952.447.4930, Cell: 952-457-7586, rsdsmn@aol.com, www.rsdsmn.org

Minnesota North Metro

Minnesota RSD Support Group

Meets 2nd Saturday, 10:00 am to Noon
Elk River Public Library, 13020 Orono Parkway, Elk River, MN 55330

Open to Everyone

Contact: Kate Healy, Tel: 763.441.1641, Kate@rsdsmn.org, rsdsmn@aol.com,www.rsdsmn.org

Twin Cities South

Minnesota RSD Support Group

Meets 4th Saturday, 10:00 am to noon
Savage Public Library, 13090 Alabama Ave. S, Savage, MN

Open to people with CRPS and their caregivers

Contact: Bonnie Scherer, Tel: 952.447.4930, Tel: 952.770.1770, Cell: 952.457.7586,
rsdsmn@aol.com, www.rsdsmn.org

Mississippi

Brandon

Michele is starting a new support group. If interested in attending or helping, please e-mail her.

Contact: Michele, rsdcajunbabe@yahoo.com

South Haven

Midsouth RSDS Support Group

Phone Support

Contact: Linda Adams, 1096 W.E. Ross Parkway West, South Haven, MS 38671,
Tel: 901 473 9559

Missouri

Brandon

New Group

Contact: Michele Breaux-Poff, Tel: 601.918.5498, rsdcajunbabe@yahoo.com

KC Metro AreaEntire Area

KC RSD/CRPS Support Group

Online, Phone, and Group Meetings.
Meets 1st and 3rd Tuesdays 7-9 PM 

Contact: Lisa Coan, Tel: 816-326-7111 (10:00 am to 10:00 pm CST),lisakcoan@yahoo.com

St. Louis

St. Louis Chronic Pain Support Group

We offer peer to peer and guest speaker meetings on the 1st & 3rd Tuesdays.

Contact: Felisha Starkey, Tel: 314.304.4921, info@stlpainsupport.com or
fkstarkey@gmail.com, www.stlpainsupport.com

Montana

There are currently no support groups in Montana.

Check surrounding states for support groups: Idaho, North Dakota, South Dakota, Wyoming

Find an online support group here.

Nebraska

Omaha

Mother of a young daughter with CRPS would like to help others successfully navigate the school & healthcare systems

Contact: Jackie Scott, Tel: 402.213.8667, hrmanager@libertytaxne.com

Fremont

Fremont RSD Awareness

Meets 3rd Tuesday, 7:00 pm
Connie's House

If no one is home to answer, please leave a message.

Contact: Connie, Tel: 402.753.3054, Cell: 402.708.1694

Nevada

Carson City

Chronic Pain Anonymous 12-Step Meeting

Chronic Pain Anonymous is a 12-Step fellowship of men and women who share their experience, strength and hope with each other so that they may solve their common problem and to help others recover from chronic pain and chronic illness. The only requirement for membership in CPA is a desire to recover from the emotional, physical, and spiritual debilitation of chronic pain and chronic illness and a willingness to help others to do the same.

Saturdays, 12:00 pm
BHS Carson Tahoe Regional Health Care, Building B
W Williams St at N Minnesota Rd
Carson City, NV 89702

Contact: Chuck, aaforeme@gmail.com

New Hampshire

Manchester

New Group

Contact: Cora, Tel: 603.703.7152, coraouellette@comcast.net

Spofford

New Group

Contact: Debbie Fisher, Tel: 603.363.4569, dafisher@myfairpoint.net

State-wide

New Hampshire RSD Coalition

Phone support only

Contact: Doreen McCullough, Tel: 603.656.9044, rav29@comcast.net

New Jersey

Atlantic County

South Jersey Reflex Sympathetic Dystrophy Group

Atlantic County Library

Anyone with chronic pain is welcome to attend. I am also looking for volunteers. If you would like to help with the group, or for more information, please contact Meloney.

Contact: Meloney Hulse, Tel: 609.625.4677, rsdangel15@aol.com

Barrington

Contact: Christine, Craftychris71@aol.com

Berlin

E-mail support only

Contact: Linda Sobolewski, 79 Roosevelt Blvd., Berlin, NJ 08009,rinebird@juno.com

Camden County

Meets Weekly
The Starting Point, 250 Highland Ave, Suite C, Westmont, NJ
Tel: 856.869.5483, Tel: 856.854.3155

Contact: Carylanne Tracy, Tel: 856.869.5483, energycat9@yahoo.com

Hoboken

New Group. Contact Kurt for details.

In the Hudson County / NYC area (One 7-minute subway ride from Manhattan, and there are ferries and cabs available)

Contact: Kurt Bond, Tel: 973.568.8078, wipmm@optonline.net

Mt. Holly

RSD and Chronic Pain Support Group

Meets 3rd Wednesday, 7:00 pm
Virtua Hospital

Contact: Kathy Henson, Tel: 609.268.15650

Mt. Laurel

RSD & Chronic Pain Support Group of Mt. Laurel

Meets 4th Tuesday, 7:00 pm
YMCA of Burlington County, 59 Centerton Rd., Mt. Laurel

Contact: Lisa Anne Vasey, Chairman, Tel: 609.877.0213, lisav1@live.com

Paterson

RSD and You Group of Northern NJ, Inc.

Meets 4th Tuesday, 7:00 pm
St. Joseph's Hospital, Barclay Room, 703 Main St, Paterson

Contact: Jaclyn Drake, Tel: 201.704.0963, jaci81@optonline.net

Somerville

Living with RSDS, Inc.

Meets 1st Tuesday, 7:00 pm to 9:00 pm
Somerset Medical Center

The meeting is open to anyone with RSDS, family, friends, professionals, and others with chronic pain.

Contact: Sharon Weiner, 421 Courtyard Drive, Hillsborough, NJ 08844
Tel: 908.575.RSDS, Cell: 732.718.6978, slweiner@hotmail.com,livingwithrsds.com

Southern Ocean County

New Group

Robin Weiss is interested in starting an ongoing chronic pain support group. Please contact if interested.

Contact: Robin Weiss, Tel: 609.978.7322, sedona.solice@yahoo.com

Southern New Jersey

Contact: http://southjerseyrsdcrps.ning.com/

Vernon

Contact: Tracey Vicedomini, Tel: 973.823.0936, tavcjv@emqarbmail.com

  

New Mexico

Albuquerque and Las Cruces

Phone Support

Contact: Anna Montoya, RN, Tel: 915.490.0084, Tel: 505.503.1967,mother1959@gmail.com

Albuquerque

Phone support and quarterly meetings

Contact: Daniel Sampson, Tel: 505.315.1639, eaglemaster89@hotmail.com

Los Alamos

Contact: Hazel Devreis, 119 Sherwood Blvd., Los Alamos, NM 87544,
Tel: 505.672.4112

Santa Fe

Contact: Nancy Boal, 59 Sunlit Dr, Santa Fe, NM 87505, Tel: 505.983.3036

  

New York

Bellmore

CRPS (RSD) Association of NY State

Contact: Marsha Rothstein-Laino, RN, Tel: 516.221.7220,MarshaTheNurse@aol.com

Binghampton

Chronic Support Group

Meets 2nd and 4th Tuesday, 10:00 am to 11:30 am
Pain Center, 200 Front St, Vestal, NY

Contact: Corky Mott, Tel: 607.655.2167, dancork@echoes.net

Buffalo

RSD/CRPS Support Group of Buffalo & WNY

Meets 4th Monday, 7:00 pm, and 2nd Thursday, 10:00 am
St. Paul's Lutheran Church, 4007 Main St. (1.5 blocks east of Eggert Rd), Eggertsville, NY

Contact: Lynda, Tel: 716.896.0771, rosieo335@yahoo.com

Claverack

New Group

Contact: Julie, Tel: 518.851.2265, Magic41julie@yahoo.com

Manhattan

All meetings will be held on the first week of the month.
200 E 81st, Apt 8B, New York, NY, 10028 (b/w 2nd and 3rd Ave)

Please RSVP beforehand so that we have the proper accomodations

Contact: Laura, laurakbelt@gmail.com

Middletown

Meets 1st and 3rd Thursday

Contact: Susan Shafer, Tel: 845.412.5356, eshafer@hvc.rr.com
PO Box 595, Otisville, NY 10963

St. Lawrence Valley

St. Lawrence Valley RSD Support Group

Phone Support only

Contact: Joanne M. Thompson, RN, Tel: 315.394.9744,jthomsom@twcny.rr.com

Suffolk County

Meets 1st Friday, 12:00 pm to 1:30 pm

Contact: Debbie Huberman, Tel: 631.563.4856

Syracuse

New Group

Contact: Belinda, Tel: 315.668.1608, bsomers@twcny.rr.com

North Carolina

Hillsborough

Tarheel Telephone Support

Phone and mail support

Contact: Beth Robinson, 4100 New Sharon Church Rd., Hillsborough, NC 27278
Tel: 919.643.0383, tarheelgal1@embarqmail.com

Raleigh

Triangle Pain Support

This group is just beginning and the first meeting will be held on Wednesday February 9, 2011 at 7pm

Contact:Stacy Josephson, Tel: 919-559-0240; TrianglePS@Yahoo.com

A website www.TrianglePainSupport.org is being developed,

Salisbury

Meets 2nd Monday, 7:00 pm
Rowan Regional Medical Center

Contact: Donna, Tel: 704.637.1021

Shiloh

Camden County

Support will be available via E-mail, Phone & Skype initially, no face-to-face meetings will be planned or scheduled until after the holiday season.

Contact: Samantha Adcock, Shiloh (Camden County) NC Tel: (252) 336-4462
E-mail:   nccrpsrsd@gmail.com
Skype: Samantha.M.Adcock
Website: https://sites.google.com/site/nccrpsrsda/ (under development)

North Dakota

Grand Forks

New Group

Contact: Shana, Tel: 701.741.0073, Pray4acure@gmail.com

Ohio

Cincinnati

RSD Painfree

Meets 3rd Wednesday, 7:00 pm to 8:30 pm

Pleasant Ridge Recreation Center, The Blue Room, 5915 Ridge Rd., Cincinnati, Ohio 45213

Please show some love and support and let's make this happen for southwest Ohio. E-mail us if you would be interested in attending this group.

Contact: Cyndi and Patrick Ellis, RSD180painfree@gmail.com

Cuyahoga Falls

Meets 1st and 3rd Tuesdays
Auditorium #1, Falls General Hospital, 1900 23rd Street, Cuyahoga Falls, OH

Contact: Circclerk@core.com

Cleveland

Phone and mail support

Contact: Georgette Bell, Tel: 216.481.2802
17909 Rosecliffe Rd., Cleveland, OH 44119 

Rich Forentball, 17904 Brazil Rd., Cleveland, OH 44119

Columbus

Meets 2nd Tuesday, 1:00 pm to 3:00 pm

Handicapped parking is available.

Contact: Susan Diamond, Tel: 614.805.4239, sediamond57@yahoo.com

Dayton and Vandalia

Phone support

Contact: Cindy Lowe, Tel: 937.898.1807

Lorain County

Online, e-mail, telephone, support group meetings, and snail mail support is offered.

Meets 4th Saturday. Location varies each month.

Contact: Jessica Jacobs, Tel: 440.822.7779, jljacobs1976@live.com

Milford

Phone Support 24/7

Contact: Mark Guy, 6041 Bridgehaven Dr, Milford, Ohio 45150, Tel: 513.831.1525, Fax: 513.831.1625, Cell: 513.659.3626, markguy@cinci.rr.com

Oxford

Meets 1st Thursday, 7:00 pm

Contact: Tammy Maxwell, Tel: 513.523.0169, maxwell1113@msn.com

Seville
New Support Group

Contact: Wendy High, PN, Tel: 330.931.9822, momoffatigue@yahoo.com

Warren/ Youngtown

Northeast RSD Support Organization

Meets 2nd and 4th Tuesday

Contact: Sandi Gabriele, 145 Terrace Drive, Youngstown, OH 44512-1630
Tel: 330.788.1186, rsdohio1@zoominternet.net

Warren

Mahoning Valley CRPS-RSDS Support Group

Meets 4th Tuesday, 6:30 pm to 8:00 pm
(Call for location or leave name and number we will call you right back.)

Contact: Cindi Horkey, Tel: 330.469.5735 or 330.979.2359,CindiHorkey626@aol.com, cindihorkey@yahoo.com 

or

Carol Polan, Tel: 330.609.5028

       

State-wide

RSD of North West Ohio

Contact: Anita Boyer, rsdsupport@accesstoledo.com

  

Oklahoma

Oklahoma City

Oklahoma RSD/CRPS Support

Cimmaron Steak House. View website for more information.

Contact: Tracy Jones, jonestra@yahoo.com, oklahomarsdcrpssupport.com

Ponca City

Phone support only

Contact: Vonda Goad, Tel: 918.738.4193

  

Oregon

Grants Pass

Phone support

Contact: Nomeca Hartwell, Grants Pass, OR 97526, Tel: 541.474.3025

Portland

Phone support

Contact: Susanne Geraghty, 10719 S.W. 62nd Dr., Portland, OR 97219,
Tel: 503.293.0748

Portland

Phone support

Contact: Federico Aquino, Tel:503.890.7959, tainomaya@msn.com

  

Pennsylvania

Allentown

Northeastern PA RSDS Association

Meets Monthly
2845 Tilghman St., Allentown, PA 18104

Contact: Rae Lynne Tuffiash, 1040 Whitman St., Allentown, PA 18104
Tel: 610.395.0385, rsdmail@aol.com

Mrs. Daisy Bittner, 3638 E. Grant St., Slatington, PA 18080

Allentown-Lehigh Valley

Compassionate Friends Network for RSD/CRPS and Fibromyalgia

To join this free informational and educational network, please e-mail your first and last name, address, and telephone number. This is a confidential list which will only be used to contact you for meetings, events, and mailings.

If anyone would like to volunteer their time to be part of this network, please state in your e-mail.

Contact: Paula Thibault, lvrsd99@msn.com

Breinigsville

RSD/CRPS Support Network (by phone or will visit in your home)

Contact: Mrs. Peggy H. Grim, 8907 Breinig Run Cir., Breinigsville, PA 18031,
Tel: 610.530.7346, kellie1@ptd.netrsdsupportnetwork.wordpress.com

Canton

Lycoming County RSD Support Group

Meets monthly
Divine Providence Hospital (Private dining room basement)

Contact: A. J. Moyer, 2 Carlton St., Canton, PA 17724, Tel: 570.673.5548,ajmoyer@sosbbs.com

Chambersburg

Phone and Mail support only

Contact: Paula Brown, 174 Highland Rd., North Guilford Hills, Chambersburg, PA 17201, Tel: 717.267.0806

Delaware County

Kitty Cares

Meets monthly

Contact: Kitty, Tel: 610.872-5631

Erie

Northwestern PA RSDS Assn. Support Group

Meets 2nd Tuesday, 6:00 pm to 8:00 pm
June, July, August, September, October, Dinner in November
Hamot Heart Institute, Erie, PA

Contact: Tanya Schrader, 1316 West 22, Erie, PA 16502, Tel: 814.873.1564,northwesternrsdsa@yahoo.com

Honey Brook

Tri-County Chronic Pain Support Group
71 Wagon Way, Honey Brook, PA

Meets 1st and 3rd Tuesday, 11:00 am to 1:00 pm
Honey Brook Presbyterian Church, Rte. 322, Honey Brook, PA

Contact: Craig Collier, Tel: 610.286.5728, or Georgann Geedey, Tel: 610.273.3163

Indiana

Meets 3rd Thursday, 6:00 pm to 7:00 pm
Indiana Regional Medical Center, Indiana PA

Contact: Jamie Brown, Tel: 724.599.8341, zoiemae@msn.com, or Mrs. N.J. King (hospital contact), Tel: 724.357.8135

Johnstown

Support Group for Complex Regional Pain Syndrome

John P. Murtha Neuroscience and Pain Institute, 1450 Scalp Ave, Johnstown

For meeting times, please call Lori Murphy.

Contact: Vicki Walker, Tel: 814.410.3301, csiwalker@atlanticbb.net, or Lori Murphy, Tel: 814.269.5238

Lewisburg

Meets 1st Sunday, 3:00 pm
Evangelical Community Hospital

Contact: Jenny Dye, Tel: 570.649.5061, jb_dye@yahoo.com

Monongahela

Monongahela Valley Support Group of Southwestern PA

Meets 2nd Tuesday
November to March: 11:00 am | April to October: 6:00 pm to 8:00 pm

Monongahela Valley Hospital, Lombardi Conference/ Office Bldg.

Contact: Paulette Anderson, Tel: 724.929.9492, panderson_15438@yahoo.com

Philadelphia

8-week therapy group for people with chronic pain (fee charged)

Contact: Sarah M. Whitman, MD, 18 Hilltop Road, Philadelphia, PA 19118, Tel: 267.265.2082

Scranton/Wilkes-Barre

Scranton/Wilkes-Barre PA Support group

Meets 3rd Saturday, 1:00 pm, in a conference room adjacent to the public cafeteria
Mercy Hospital: 746 Jefferson Avenue, Scranton, Pennsylvania

Group does not meet January and February. March meeting depends on the weather.

New members, family, and friends welcome.

Contact: Suzanne O'Toole, Tel: 570.383.0578 (Call anytime),ScrantonRSDGroup@cs.com

Souderton

Montgomery County RSD Support Group

We will be starting meetings in late September-May.

Please contact for resources, support, and information.

Contact: Stephanie Maberry, Tel: 267.888.7559 (anytime),MontcoRSDsupport@verizon.net

State-wide

Pennsylvania RSD Coalition of Networks

Contact: Rae Lynne Tuffiash, 1040 Whitman St., Allentown, PA 18104,
Tel: 610.395.0385, rsdsmail@aol.com 

  

Rhode Island

Cumberland

RI RSD Foundation

Contact: Robert Hinton, 17 Lemieux Ave, Cumberland, RI 02864; Tel: 401.533.2142 (cell); therhodeislandrsdfoundation@cox.net;http://www.rirsdfoundation.webs.com

South Carolina

Greenville

South Carolina RSDS Association

Meets monthly
St. Francis Hospital Bernardine Center

Contact: Louise Plaster, PO Box 72, Simpsonville, SC 29681, Tel: 864.967.7965,
Cell: 864.350.1342, scrsda1@aol.com, www.scrsda.org

Robert Schwartz, MD, 317 Francis Dr. #350, Greenville, SC 29601, Tel: 864.235.1834

Sumter

New Group

Contact: Donna Parker, Tel: 803.481.7521

South Dakota

Aberdeen

Nina is interested in starting an in-person or online support group

Contact: Nina, profslota@yahoo.com

Statewide

E-mail and Telephone Support

Contact: Nicole, http://www.raftsafloat.com/contact-us.html

  

Tennessee

Dayton

Contact: Ann Rector Fine, 2198 Maplesprings Rd, Dayton, TN 37321,myredprix@aol.com

Loudon

Reflex Sympathetic Dystrophy & Chronic Pain Support Group Of Eastern Tennessee

Meets 1st Wednesday, 6:00 pm
The Tellico Village Community Church, 130 Chota Center, Loudon, TN

Contact: Suzy Holcomb, Tel: 865.657.9052, AuntSuzyMouse@hotmail.com

Middle Tennessee

Middle Tennessee Support Group RSD

Looking to develop a local group for discussions and support, for RSD patients, and well spouses

Contact: Peter and Cherrie Albertson, patchythreads@aol.com

Nashville

New Group

Contact: Charlie Glover, Tel: 615.340.5008, glover19671@hotmail.com

  

Texas

Arlington

Home is Your Range: a group for people suffering with both CRPS & MS

Contact: Connie Hughes, Tel: 817.465.1585, rsdhelp@hotmail.com

Big Spring

New group

Contact: Krinkle and Debbie, Tel: 432.935.6278, krinkle102@suddenlink.net, or
Lucy, Tel: 432.264.1213, or Tina, Tel: 432.267.1883

Dallas

New group

Contact: Antoine Beachum, Tel: 214.714.5381

El Paso

Phone Support

Contact: Anna Montoya, RN, 7320 Duxbury Dr., El Paso, TX 79912, Tel: 915.833.3668,
Fax: 915.845.3011, mother59@excite.com

Houston

This group is just beginning and is seeking individuals to assist in coordination.
If interested, please contact Denise.

Contact: Denise, Tel: 936.336.0800, cleo1406@yahoo.com

Lake Jackson

Spinal Cord Stimulator and Chronic Pain Support Group

The meeting helps guide those who are considering getting an implant, or have an implant. The group's main focus is to support those living with chronic pain, with or without an implant.

Meets 2nd Monday, 11:00 am to 12:30 pm
The Medical Center of Plano, 15th & Coit Rd (Formal Dining Room in the cafeteria)

Contact: Dr. David Hanks, Tel: 972.596.5960

Pamela Terrell, Tel: 972.567.6406, deadwentgone2@verizon.net

Cindy McNeill, Tel: 972.384.0777, goseaweed@wmconnect.com

Vickie Thoma, Tel: 972.625.8140, rsdcrps@yahoo.com

San Antonio

New group

Contact: Dawn, Tel: 210.279.2019, hope4rsdntx@yahoo.com

Western Texas

Phone Support

Contact: Anna Montoya, RN, PO Box 203, Santa Teresa, NM 88008, Tel: 915.490.0084,
Tel: 505.503.1967, montoya59@comcast.net, mother1959@hotmail.com

  

Utah

There are currently no support groups in Utah.

Check surrounding states for support groups: Arizona, Colorado, Idaho, Nevada,New Mexico, Wyoming

Find an online support group here.

  

Vermont

There are currently no support groups in Vermont.

Check surrounding states for support groups: Massachusetts, New Hampshire,New York

Find an online support group here.

  

Virginia

Peninsula

Friends Living with RSD/CRPS

Contact Erin Dasher for more information on meeting dates and times
Tel: 757.634.9162, wmbg_rsdsupport@hotmail.com or erindasher@cox.net

Richmond

Virginia RSD Association

Summer: Twice monthly | Winter: Once monthly
Sheltering Arms Hospital

Contact: Virginia Porter, 9770 Osborne Landing, Richmond, VA 23231,
Tel: 804.795.5343, rsdinva@aol.com

Virginia Beach

Meets 3rd Tuesday, 11:00 am to 1:00 pm

Contact: Debbie Holt, Tel: 757.737.1379, debzhi@aol.com

Washington

Yakima

Hope 4 Pain

Phone Support

Contact: Carol, Tel: 509.823.4443, beaglebabe@charter.net

West Virginia

Clarksburg

New Group

Contact: Debbie, Tel: 304.641.8092

Wisconsin

Greenbay

RSDS Hope of Wisconsin, Inc., of Greenbay

Meets 2nd Monday
St. Vincents Hospital

Also meets in Saukville

Contact: Orvel Howard, Tel: 920.437.9197, rsdshope@sbcglobal.net

Greendale

Phone support only

Contact: Beverly Kitzke, Tel: 414.421.4536

Port Washington

New Group

Contact: Kathy Buck, Tel: 414-520-7287, kathybuck@wi.rr.com

Sheboygan

Sharon is looking to start a support group and to raise awareness.

Contact: Sharon Romenesko, share1965@charter.net

Wyoming

There are currently no support groups in Wyoming.

Check surrounding states for support groups: Colorado, Idaho, Montana,Nebraska, South Dakota, Utah

Find an online support group here.

Source: RSDSA