RSDSA Offers Suggestions for CPP Dealing with Coronavirus – What Do You Think?

RSDSA Offers Suggestions for CPP Dealing with Coronavirus – What Do You Think?

Our friend, Jim Broatch is the longtime leader of RSDSA which is the organization that drives research and awareness for those with CRPS. He sent the following to his members this week in light of the Coronavirus pandemic which is sweeping the world. I thought I’d share with our readers. At the end, I have a question for you. Here’s Jim’s note:

The World Health Organization (WHO) has declared COVID-19 to be a pandemic. Here at RSDSA, we are trying our best to filter through these developments and react according to advice from public health organizations we trust such as the Centers for Disease Control (CDC).

By now, there isn’t a single person who hasn’t heard about the spread of COVID-19, aka coronavirus. We do hope everyone is sticking to reliable and scientifically based information. This is not to add to any alarm, but rather to let you know we care.

Some general hygiene and sensible advice:

Please practice good hygiene. Wash your hands frequently for at least 20 seconds or two choruses of “Happy Birthday”

Cover your nose & mouth if you have to sneeze or cough, preferably with your elbow, sleeve or tissue

Avoid close contact with people who are sick

If possible, avoid touching your eyes, nose and mouth

Use hand sanitizer with at least 60% alcohol

Clean and disinfect frequently touched surfaces

Try to stay informed from reliable scientific sources. The CDC and the WHO are updating their sites with the latest information.

A physician close to RSDSA also says in order to be prepared for a community lockdown try to have:

  • A week of food supplies
  • Two weeks’ worth of medication on hand

Editor’s Note: And now our question. How is the coronavirus pandemic affecting you—in terms of your own health, (physical or mental or both) what are you doing for you and your family to prepare, have you spoken with your health care providers, has your own care been compromised etc.?

Let us know in our commentary section or email me at

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Authored by: Ed Coghlan

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What a difference a few days make in the pandemic we are facing.
Our state is now under
“Shelter In Place ” Orders. My Pain Clinic doors were closed as of 5PM yesterday. So far, the order stands for a 3 week period. Anyone who is caught out on Non-Essential travel will be convicted of a misdemeanor charge at this point.
We as people dealing with chronic pain are calling each other to support one another to keep our spirits up through this difficult time. We are sharing ideas of how to cope and deal with our pain and stress and to try and stay functional for as long as we can. We know others are dealing with this same problem elsewhere in the country and in my opinion it’s a tragedy.
I believe that pain control is an essential part of health care and should be treated as such. A basic human right.
Some clinic’s have been closed or have been cancelling appointments for 3 weeks already. And it’s taking a toll on many. Appointments are tentatively being set up for the last week of April and beginning of May. But no promises of the “Shelter in Place” ban being lifted by then.
Everyday is a challenge, without pain relief treatments, which for my situation it’s the only option, Everyday is becoming more challenging. My treatments are overdue and will be now for a month or possibly more.? Praying for the Country and all of You. May we come through this Smarter, Stronger and More a Compassionate society. God bless. Stay Safe.


I had gotten to the store and found enough meat ,broke down the package and shrunk wrapped in portions, got frozen vegetables and what little box foods I could & cleaning supplies, 2 weeks ago when the virus numbers were low in my state. I have stayed home except for my pain treatments. The Clinic I go to is allowing Only the Patient inside, the driver must remain in the vehicle. Sanitized pens are provided for checking in as the kiosk has been removed. All staff is outfitted in masks and latex gloves and patients are questioned and temperature is taken before allowed out of the waiting room. So if you are a patient at my clinic AND YOUR FOOLISH ENOUGH TO GO IN SICK YOU WILL NOT BE TREATED. ANYONE WHO WOULD ATTEMPT TO DO SO IS FOOLISH AND SELFISH. This is a Serious Situation ! Yes pain sucks but Death is Permanent !
Anyone who would purposely expose others, who are already Vulnerable, need to take a serious look at themselves within. You are not the only one suffering ! Taking a chance of infecting others with sickness of any kind is ludicrous! Not only now but at Anytime.
This virus will pass and things will get back to business as usual as long as people observe the recommendations set in place and Think and Act Responsibly.

Alan Edwards

Hmm, the intractable pain pandemic dwarfs the current flu epidemic which was untouched by the yearly flu shot pushed by pharmacies. Drugs like tamiflu are being ignored. I just saw the health tsars patting themselves on the back on national television about the outstanding job they are doing. For we intractable pain sufferers the epidemic is a minor concern. We are getting closer to the day when our government bans opioids which allow us to function even with the flu virus. Pain from.the virus will be controlled although no expert would ever admit that fact.

Be assured any drug tsar or VIP will be offered codeine if they contract the virus.

Deanne Daniell

I live at a retirement facility with Independent and Assisted Living, and Memory Care. Here’s what they have done:
1) All outside (off campus) activities are cancelled, until further notice.
2) Visitors (even family members) are strictly controlled; family members bringing supplies for residents should bring them to the front building, where they will be received and delivered by employees.
3) When residents go off campus (discouraged, except for necessary, such as medical appointments), we have to ring the bell, and be let back into the buildings.
4) Until/unless the Coronavirus is identified in residents, inside facility activities are UNRESTRICTED.

Kelly-Anne Bryan, RN

I appreciate the post about precautionary measures to prevent spread of corona virus. However, it does not go far enough. 

While it is prudent to avoid contact with people who have symptoms such as fever and cough, not all who have the virus will be symptomatic. There are some who have been exposed and are shedding virus, but have not yet developed symptoms, as seen with influenza. Others will never develop symptoms, but can still transmit the virus to others. 

Handwashing and sanitizing high touch surfaces is helpful, but also not enough. The virus can also linger on all surfaces, including floors, for many hours. In light of this, the only way to contain the virus or avoid getting sick is to isolate everyone, which is very difficult to do.

If you are a person at high risk for death, such as someone who is over 60, have diabetes, high blood pressure, heart disease, or are immunosuppressed (these patients had a much higher death rate in Wuhan), self isolation would be prudent. However, there have been deaths in people with none of these risk factors.

Personally, I plan to stay home for at least the next month, and monitor developments closely. While this may not be possible for everyone, anyone who can should do so. 

The virus will be contained to the extent that the population is compliant with self isolation. It is likely that it will become mandatory, as has been done in China and Italy. Corona virus, in general, has a mortality rate of about 4%. Yesterday, March 13th, in the U.S. 500 new cases were diagnosed in 10 hours. That’s 50 per hour. Statistically, of each 50 people, 2 will die.

Please stay home.
Kelly-Anne Bryan, RN


Idk who suggested this, but nobody can get extra pain meds. We cant even get normal amounts of pain meds anymore. This is ludicrous.

Thomas Wayne Kidd

I fear that my doctor won’t give me the Methadone that I have taken for almost 30 years. Lately he has been thinking of sending me to another clinic which is possible. This evil just keeps getting worse. If I am taken of this medicine I won’t have to be concerned about Coronavirus, because I won’t last long.

Cindy too

I’m writing about the effect of coronavirus on CPP’s and on our docs.

We can’t miss our monthly pain appts if we want our Rx’s. This means that we’ll go to the appts even if we’re sick, as long as we’re able to move — so, risking contaminating staff and other patients, who then may contaminate more people.

And, there may be more drug shortages.

Govt wants us to keep extra food, etc, — including a minimum 30 day supply of all Rxs — which is impossible to do for opioids. (plus ever since 9/11, govt has said to do this, but it’s still impossible for opioid patients)

So, I’ve written this info to my state bd of medicine and state and fed legislators, and my county commissioner, asking them to:

“….. during this crisis,it would help if CPP’s: (1) could get larger Rx’s, and (2) could fill new Rx’s sooner than the current Day 29, and (3) would not have to go in person to pain docs each month if sick, but still be able to get Rx’s.”

(Day 29 is the magic day in my state)

I also wrote that —

If there are shortages of opioids which people in horrible and endless pain truly need to survive, then, aside from the unbearable pain they would face without their Rx’s, the sudden loss of these meds could bring on sudden death.

I cited 2 articles about sudden death brought on by sudden cessation of opioids, and wrote the articles’ Conclusions in my letter in addition to giving the links.

Here are the links:

I urge people to write similar letters to their legislators on every level, and bds of medicine, and any other agency/person they can think of.

Gail Honadle

You are going to need baby wipes, diarrhea leaves toilet paper burned butts.

President Trump ensures med records available to every American

Katie Olmstead

I have one small problem. Food, I have. I even have toilet paper. And cat food (and litter!). But meds? Insurance and pharmacy/health center rules prohibit buying meds before my 28 days are up. To the day. My pharmacy is around the corner. It requires two visits (some rules), one to pick up the scrip and another visit to pick up the meds (I am not going to sit there and wait an hour). This is a fear I have. Going cold turkey off pain meds if the deliveries dry up? No one knows what is going to continue to be open and available and what will shut down. Yup, worried.