COVID-19 and Chronic Pain – How is it affecting you?

COVID-19 and Chronic Pain – How is it affecting you?

This COVID-19 public health emergency–the largest health issue any of us have ever faced– has done a couple of things.

First, it has revealed that this country is not–at all–ready for a pandemic. The lack of response to basic needs–like nose swabs, masks and other basic elements of preventative medicine (not to mention the lack of “big things” like ventilators–is causing more people to get sick, and presumably dying, than should be.

Second, it is exposing–for those of us who are paying attention–to how the federal government’s inability (unwillingness?) to do something about people at risk is doubling down on the lack of attention paid to chronic pain patients.

Watching the federal government’s absolute inability (and ineptness) to react to this public health emergency has reinforced–to me at least, and probably you–that the chronic pain patient is being violated by this lack of attention.

So what have we learned?

Something we already knew–that a person with chronic illness (yes, that’s a chronic pain patient) is disproportionately ignored (aka under treated) by the health care “system” that increasingly doesn’t look like a system at all.

So it comes to this. Consider how you would answer these questions:

How is your treatment by your pain physician or primary care physician different now than it was before the COVID-19 public health emergency?

Are you utilizing tele-medicine more in your discussions with your provider?

How, if at all, is your pharmacist, involved in your health care. Are you able to gain access to your prescription? If not, what is happening?

What is the impact on your family, during this time? Are they impacted by what is happening to you? If they are, what is the impact?

If any of these questions inspire you to comment, please let us know in the commentary section.

We think the voice of the chronic pain patient must be heard, especially now!

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Authored by: Ed Coghlan

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This is just a bankrupt the world and kill off as many people as possible fake out.

Lisa

Treatment for my pain issues were halted for over a month due to the shutdown of the Pain Clinic in my area due to the virus. However it has been able to re-open as of last week after some of the restrictions have been reduced after the long Shelter at Home Order is slowing the number of cases in the state. At the present there are 1032 Daily New cases and 108 deaths.
The Safely Rules in place for treatment are; Drivers must remain in the vehicle, Patients must wear a face mask into the Clinic, upon arrival your temperature ( if you have a temperature you are transported to the hospital ),is taken and written on a piece of paper that you hand to the nurse who will then take you into the inside of the main treatment area. Only your weight is taken at this point to determine the sedation amount needed. They are not doing any other vitals anymore at this point. Nor are you filling out any pain assessment or paperwork on pain patterns and levels. All other protocols are the same at this point forward.
As far as my Primary Physician I have had no contact with at this time. I’ve had no problem with getting any prescribed medications and my Pharmacist is Absolutely Wonderful. As is the support from my Fabulous Husband, He’s my Hero!
We are facing a continued lockdown into the middle of May now and masks are now required for everyone who are in public places or in groups of 10, which is the limit for a gathering and you Must remain at least 6feet apart or face a fine of $1000 and/or a misdemeanor. Some cities are even adding an additional $500 fine in some Hot-Spots. Here , the virus is taking a toll. It’s real here. From reading a few posts below I see some are not experiencing any issues with the virus, your Lucky and I pray that you continue to be because it’s a Terrible Virus and Many people are dying Every Day.
Take Care and Stay Safe Everyone.

Alan Edwards

I am a pain treatment advocate and now 50 year intractable pain patient. The abuse and harassment has been continuous since 1971.

Intractable pain began in 1981 and no doctor would treat me. Finally, in 2003, a doctor prescribed alprazolam which helped my back spasticity, shyness and pain. But arthritis ravaged my entire body as neuropathic pain appeared. I became a vegetable until opioids changed that by a pain doctor who was compassionate and knew his stuff. Flu hit me one year. The CVS vaccine had failed. The pain meds did not. I recovered painlessly in 3 days. I told the pharmacists, who ignored the information.
Covid 19 has been absent from my state and others. Fauci should be fired for incompetence. Let us put on protective masks and go back to work.

Alan Edwards

If certain subjects or opinions go outside the scope of the comment section or if comments are banned feel free to email your readers. It is a violation of the Constitution and Declaration of Independence to do so. I am not angry at my rude pharmacist nor at NPR.
My doctor said covid 19 did not pose a serious risk to me or him and not one employee was wearing a mask or gloves. It may be an offence to print certain non- main stream media pablum, but my comment was just as accurate as the main article. My peers below are suffering chronically, for life. I am suffering and am adjusting to being wheelchairbound until death. Not one commenter or the author mentioned having covid 19. We all have chronic diseases which will not be cured. Covid19 is nothing compared to a rabies epidemic but will do what the flu does every year. Some infected will die while others will develop natural immunity. As for pain and my situation; Lyrica is not effective and most chronic pain patients will be removed from opioids and placed on anticonvulsants. We have a pain epidemic which is and has been crippling citizens since the Harrison Act of 1914 when opioids were banned after most UnCivil War veterans needing morphine had passed. Covid 19 will pass. It is time for the common man to go back to work with a protective mask and gloves just like the elite who also don’t have chronic pain.

Alan Edwards

My pharmacy, Giant Cvs, fills what meds are unneeded and low efficacy, while maintaining rudeness and high presurre on we intractactable pain patients and our meds.. There is not a single case of covid19 or any virus sickening people here to Georgia. Relatives who are doctors in NYC are seeing people hungry and moneyless but no pandemic.

I am surprised NPR bit the pandemic hook, which techncally comes around yearly and goes away thanks to natural immunity and the season. If the madness continues, an economic collapse will occur. Unlike the real pain crisis, the false virus crisis gets the media attention. The elite are allowed to work and collect taxes and write tickets, laughing in a virus-proof mask and body armor after hijacking drivers at gun point. It is long past the time that citizens took control of the government elite using one virus among many that kill 20 to 60 thousand a ever year to grab more power and allow food, money, and medicine to eventually become critically low. A non-viral epidemic courtesy of the incompetent elite, is already wiping out healthy Americans. Notice no politican, police, and other elite have contracted covid 19. There is no good test for it.

The government and agents of the goverment need to be pruned. I won’t elaborate on covid 19 actors and the extreme use of the word ‘hero’. The virus is mild and often asymptomatic. Let’s go back to work.

Rhoda J MacMillan

Hi Ed, I have several autoimmune diseases including RA and AS. Before this stupid war on drugs, I was given plenty of meds to make it thru my day. I worked, went on vacation with my friends every year, ate out, etc…. Since I am given an anti-anixety med, my pain provider’s owner decided that I wasn’t allowed to have my long lasting med. At the time, I was on 2 pain drugs. Now I have one short acting one that I can take 4 times daily. My other Dr. Who prescribed the anti-anixety med has been helping me cut down after 20 years off of this life saving drug. My pain provider’s is a very nice young lady who does not want to lose her job. I understand. But my pain doesn’t let me sleep more than 3 hours at night. I spend my days seeing how long can I go without needing another pill. I wasn’t diagnosed until I was 45, didn’t have Any problems doing whatever I wanted to do. I got up for work one morning and literally couldn’t walk. No one believed me, not even my husband until I was properly diagnosed. For years even after I was, he would get so frustrated with me. He has found out that I truly am in pain and now he is very good to me. I know that other people have it much worse than me and I pray daily for everyone suffering will be eased. Thank you for listening to me.

becky

My daughter is higher risk than the elderly acc to N.P. two of her docs would not call in her meds. I had take PTO, go pick up the RX s then go to drive thru pharmacy. Wait half hour to drop off.. come back hour later and wait another half hour to pickup. Drive thru horribly long lines. It would be nice if doctors did not need special software to call in RX’s. It would help lots. Many are technically challenged with computers.

Rosalind Rivera

Every single month I had an issue with one particular pharmacist at Rite Aid in Apple Valley. He tends to be extremely rude and lacks any sympathy for people. His name is David. I began getting my pain meds through Alliance-WALGREENS mail order but that proved that be a catastrophic mistake as my meds were always late and two months ago I didn’t receive one of them at all until six weeks later. Talk about suffering. In either case, I went back to Rite Aid however I chose to go to a different one in Victorville which has no problems filling my scripts. My pm doctor continues to prescribe a dosage which barely takes the edge off of my chronic and intractable pain. I have Spinal Stenosis, Rheumatoid Arthritis, Systemic Lupus Erythromatosis, Fibromyalgia and several other immune as well as non- immune issues. Due to this, my level of pain is indescribable. I have been thinking of reporting this pharmacist however as a born again Christian it somehow does not feel right to do this however this is causing a great deal of suffering for me as my provider has to travel quite a distance to where the pharmacy that I now use is located. The Rite Aid i previously used is only about 20 minutes away from my home. I too have been abandoned, forgotten and sadly being treated with disrespect by my own children whom all live in different states from where I live. I also do not know a single soul in the desert isolated area in which I live. I’m praying daily to my higher power to make it possible for me to relocated to a more populated area so that when I have an emergency, someone, anyone can hear my pleas for help.

Maureen M.

Hi Ed, As for me, unless I’m missing a whole lot, I believe that our Gov’t has done the best it possibly can, each day, one step at a time, to help the American people through this horrific time.
***Perhaps preparation should have started a few years back when this virus was foreseen! That’s for sure!
But, given the way it is… I think that the President’s medical team, leaders and officials are excellent, exhaustingly working 24/7 and trying hard to figure it all out.
I can’t imagine being in their shoes and give them a ton of credit. I am proud of them.

As for me as a CP patient…it’s been a month since I’ve seen my Pain Doc. We are planning to try our 1st Telehealth visit this morn, although it is 9:30am and I haven’t heard from them yet.
So, I sit and I wait. This will be the 1st time he will ‘fax’ in my script.
Otherwise, I have to have it handed to me. It won’t be filled until Sat (today is Mon) so I will hope to get my full script then. Otherwise, my visits are always short and not so sweet. I get my script and that’s then end of the visit. There is never a discussion about my condition, even when I ask questions, of which I have given up on. I’m blessed to get my med so I keep quiet. It is the way it is!
On the other hand, I am also a patient with Systemic Lupus. I have not been so well lately…but that’s another story.
I am on Plaquenil (Hydroxychloroquine) which is (in my opinion) wrongfully being prescribed for COVID patients causing a major shortage to us Lupus folks and proving to not be the best for the sick.
Because of that…I have been informed by my insurance Co. that I most likely will not get my Plaquenil refill in 2 weeks! I am worried for that and the stress causing flare ups.
I’m trying to keep my ZEN together!
As far as effect on family…I live alone and my surrounding family is non-supportive soooo I’m used to dealing with it all the way it has always been for me.
Keep strong and keep safe everyone! Maureen M.

Lenore Arbaugh

Yes! Chronic pain patients need to be cared for and have attention paid to their well being during this time and at all times. No, the government, nor private hospitals were prepared for this situation. Though there have been warnings through several presidencies much was ignored. However, under these circumstances and the unknown and the evolving of the knowledge of the situation, as a nurse, I do not think the government has been inept. With the information given at each phase, there has been an admirable effort on the part of the task force and private medicine to deal with this totally unique situation. It truly has been a moving target and professionals are doing the best that they are able as each piece of the puzzle has been revealed.

Joan Alba

Well, I am lucky I guess. I have good doctors. I am not having any problems with my appointments, nor am i having trouble getting my medication. My pharmacist is involved in my healthcare by filling my prescriptions and making sure I don’t have any questions. While I do believe chronic pain patients and chronic illness including autoimmune disease patients need more attention, I do not expect any special treatment. I am staying in my home, not able to see my grandchildren because they are trying to keep my husband and me healthy. I know that many people are suffering and my heart goes out to them.
That being said, do I detect a problem you have with the current party in charge of our country right now? If not, I apologize in advance. But I do not think politics should be included in any of the problems people are having health wise now. We need to be party blind just as I believe that the coronavirus team headed by our vice president is right now. After this is all over, I believe it will be time to bring attention to all the times we were left out of their thinking. The times we were only referred to as at risk. Time will come.
J.A.

maxlet

My pain doc & pcp both switched to telemed, which is fine with me since the pain doc is a 2 1/2-3 hour drive each way. But he only gave me written prescriptions (via snail mail) for 2 months instead of the usual 3, & so I have to have another appointment– & copay– in 2 months. My pharmacists have been no help at all, refusing to fill my tramadol even one day early, despite the doctor’s ok, which would’ve saved me yet another trip out in public. As for getting the recommended 3-month supply of medications…don’t make me laugh. Even if my doc would consider it, the pharmacist would never fill it no matter what. I have chronic respiratory problems in addition to pain, so am basically a poster child for the type of person they don’t bother to waste limited ventilators on, so I really, really don’t want to get the virus. In addition, pharmacy errors made me have to go there 4 times in one week. i have no family & almost no social circle, so the enforced isolation isn’t a lot different from regular life for me; I just hang with my pets at home as usual, tho it’d be nice to be able to go to the library again some day. Tho I have a broken tooth that desperately needs attention, I’m not going to have some stranger breathing in my face for quite a while.

it’s sorta interesting that the opioid “crisis” was world-ending for a few years, & now suddenly doesn’t even exist any more…except for the draconian & devastating rules & limits they enacted during it. Now apparently Our Prez is all worried, claiming people are committing suicide b/c of the economy…pain people really have been committing suicide upon losing their meds for years & no one in government gave a damn. Sure shows where we are in the scheme of things….disposable.

Lynda

It sucks! Phone conversations with doctors leave a lot to desired. They can’t see you totally, so they don’t get how bad things are going. It’s a lot easier for them to minimize your pain & not see your quality of life deteriorating. My husband is frustrated & so he finds things to keep himself busy. My daughters & their families live out of state. I don’t want to be complaining or negative when I talk to them. But I am beyond frustrated! I’m so tired of hurting & not being able to function to any acceptable level. I feel like my problems are no longer important. I try to practice gratitude (& I really do have a lot to be thankful for), mindfulness, prayer & hope for things to get better. But it’s harder now than before the pandemic. I’m high risk, so I can’t go out & right now I’m not sure I could anyway. I’m not sleeping bc of the pain & we all know what that does to our attitude and ability to manage the pain. I want to scream & have from time to time.
No we were not prepared for any of this! I don’t think our doctors were either. Their compassion is gone.
I am concerned for our healthcare workers, I used to be one. I know the stress they are dealing with & my prayers go out to them. I’m thankful that we have people who are willing to put themselves on the frontline with this. I’m hoping & praying that this improves soon. I’m planning a really heated and intense discussion with my physician this week. I’m fed up & not willing to be ignored anymore. I know everyone here is in the same boat & I hope you’re getting better care than I am now. Be safe & continue to fight to be heard. We have to be our own advocates now.

Gail Honadle

Looks like this Virus has 1 good thing going for it LESS/HIGHER COST DOPE https://apnews.com/4f0a4ca93cc2fee94d386efb13db31a0

Erika Stewart

So far, I guess I’m lucky that my doctor is still personally seeing patients and my pharmacy fills my prescriptions without problems. I have to see my doctor this week and I’m going to ask him if he can increase my dose of my long acting pain medication. I always get nervous asking just because of my past pain doctor. My current pain doctor is easy to talk with, but it’s just my past experience. Plus, I don’t want to get him in any trouble with the state and/or Federal Government. I was a former patient of William E. Hurwitz, and that nightmare will forever scare me for other doctors. Billy was an amazing doctor and I was forever be thankful that he helped me. Anyway,
My thoughts are with other chronic pain survivors.

It is actually better here in Florida for me at least. Prior to the Pandemic I had to physically go to my Neurologist and pick up a prescription every month as nothing could be done electronically . Currently, again for me, they are giving the doctors a code that they must use to send a prescription. The doctor said that it is stringent but it sure saves me time and gasoline. I take the opiate in the morning first thing to get out of bed. At 1:15 I take a second Gabapentin and I take Kratom to keep me going. I am usually good until bed but if not I take a mixture of 50% CBD and 50% THC. I just cannot take all the drugs prescribed over the past 45 years of chronic pain. I have a congenital issue where I am missing my left leg, hip and knee. When it started I gave it an 8/10 but as I grow older, I realize my body could get much worse.

I have skied on one leg, sailed and participated in many sports. That activity has been what kept me going this long.

Melinda Tarnow

Last month had to go to PM. CVS refused to fill 1 day early and I had to go out the next day and travel anther 70 miles to get meds. The reason I have to travel so far to the Pharmacy is because my local, 2 blocks away CVS won’t fill opioid prescriptions as per the Pharmacist choice. I moved here 7 months ago and it’s been a nightmare. I’ve complained 3 times to their corporate. Then this one day early non refill is different at different CVS, just like the opioid prescribing. My PM lowered my doses at first visit, even though I have been on same dose 5 years! A close family member died and 2 days after I buried her, they wouldn’t a script. They did this month, though, except my local CVS gave me a horrific time. I was sure they weren’t gonna fill, but because my PM a scripted this time, I think they felt like they had to. I’ll be really surprised if they do it again. So crazy and stressful. This should not be, and since I was forced treated, I live in pain every day.

Sue

I gave up on the health care “system” helping me long ago.

Deborah Boyd

Twice my pharmacy has been out of my pain medication. My internalist did my appointment by phone but my pain management I had to come in which put me at risk but they did see me because of course I had to pee in the cup to get my prescription.

Liz Hart

I went to pick up my pain medication recently. My prescription as ordered by my doctor requests a brand that is non generic. The generic meds just don’t work. When I picked up my meds I looked at the bottle and saw I was given the generic meds. There wasn’t time to ask questions at that point. My pain has been off the charts with the generic pain meds. I am grateful I don’t have the virus. I just wish i wasn’t in so much pain.

Hayden

Covid-19 in fact worries me for myself and my wife. Both of us are unfortunately PMP’s.
Myself for 25 years/ My wife for 11 years.
Due to being allergic to a particular dye used for an MRI 5 years ago by my pain management physician, I immediately lost approximately 50 percent of kidney function.
I am observing my wifes’ health decay now to the point she can hardly function….at all.
We have spent literally thousands of dollars on “natural” remedies , all legal, for pain management inclusive of CBD products.
“Life” continues to decay. Quality of life and even physical ability with less movement than was possible with an effective dosage of opiate medication
Opiate medication does “work” and can be managed without becoming a drug addict.
We know, my spouse and I because of our history of use of opiate medication as the last resort until outlawed by DEA.
WE both have practiced “social distancing” for over 3 years now when force “tapered” (in 8 weeks after 22 years) on medication used by myself for decades…with much success.
Not willingly but, limited because of insufficient pain management therapies, alternative therapies that simply do not work.
We are both very tired of writing, e-mailing, and telephoning those that are “supposed” to represent ALL citizens only to get a form letter, an intern that responds by stating, we understand your difficulty, and by normally ZERO e-mail back with a response relative to our concerns..

LMC

The government has always been under prepared for everything. If our country had taken these same precautions for the 2017-2018 Flu season we might not have hospitalized 808,000 people with more than 61,000 deaths.
The CDC estimated more then 35 million were affected by flu symptoms to some degree. Yet our country did not shut down or go into the panic that we have with COVID19.

Surprisingly, I was able to email request my opioid refills and my pharmacy filled them on time and offered to deliver. My pain specialist office called patients at end of March to explain that appointments would be over the phone. While all the automated calls from their office came thru, I waited until 4pm for my 10:45am call. At 4pm I called and they said my number wasn’t working and we re-scheduled for the next morning at 10:30am. We finally got thru the appointment and scheduled my next appointment.

I am probably very lucky that my experience has been good and my heart goes out to everyone that I am sure are having additional nightmares, seeing as how its always something horrible in the monthly processes when it comes to chronic pain patients and we are always last on the “to be concerned about” list.

Pamela Aylor

My doctor is requiring appointments every two weeks now! The explanation I got was that so many people are very depressed right now and it wouldn’t be prudent to give a whole month’s worth of pain medication! Oh please, couldn’t someone use two weeks worth and accomplish the same thing? I believe this is a money grab pure and simple! The group is Physician’s Partners of America. When I further questioned a staff member of my doctor after explaining that the DEA allows for one month with two refills dated for two and three months out I was told it was a doctor’s discretion. Kaching $$. Having to go in for a ironed test when I’m high risk puts me at peril. Also a different doctor in the group gave an acquaintance the rx with two months as well. I’m weary, and stressed because of this. My doctor also books 5 people for one ten minute appointment slot…all while people in pain had to wait for hours to see him because he always comes in an hour late. Unbelievable

Maria H

Most of my physicians are utilizing telemedicine and I have to say, in my opinion, our visits seem more personal, more productive. I don’t know if that’s due to the pandemic were fighting or the difference of speaking from home to home.

I haven’t personally faced any issues with pharmacies or meds. My local pharmacy knows me well, they even offered to bring my meds to the car.

I agree a new light has been shown on our countries inability to cope with a major medical emergency and importantly how the DEA production rules have adversely effected patient and hospitals. I hope that brings about change!

For those that don’t know the CDC is supposedly rewriting their opioid prescribing guidelines. They are asking anyone, patients, their family members and friends and caregivers to comment on the effectiveness of pain medication. I urge you to invite everyone in your circle to comment!

https://beta.regulations.gov/document/CDC-2020-0029-0001

I pray we all have a low pain day and that you are home safe, stay alive

Mona Bucher Mallory

Why are you putting it all on the Federal government? Our structure of government puts the the States in charge of the health services of the State, not the Federal government. The States were supposed to have these stockpiles ready to help their citizens. Our President has done a good job of bringing together public and private resources to help the Governors help their people. The proof of this responsibility is the Governors being in control of the lockdowns or no lockdowns in their State. You can’t have it both ways!