Medical Guidance

I just succeeded in securing approval for a long covid client who was rejected for months to begin these infusions. The process was challenging but I was successful.

avi

Yes! Thank you, Jessina!

Would definitely be interested, I work with a lot of Long Covid and ME/CFS clients who would greatly benefit from these treatments.

I would love to be considered for a scolarship. I don't currently have health isurance. I was diagnosed with CCI/AAI before records were electronic.

awesome resource

Donna — THANK YOU SO MUCH for sharing this information!!!

This is such a huge need. we as the EDS community are so excited to hear about this progress. thanks for sharing!

Thanks to Amanda for commenting! All great stuff in there (as expected from our advocacy pain expert).

I had a few months where I was getting tons of these calls myself, so I found some literature and resources. Some is specific to California, and most of my little comments are written for a patient/client email, but you'll get the idea! (Also, I haven't checked most of the links in a few years, but hopefully they are all good. Comment if you find a broken one.)

This fact sheet comes from a group dedicated to policy advocacy for people with chronic pain. nationalpain.org/fast-facts-opioids and this one is a curated list of some of the literature about the harms of tapering against the physicians best medical judgement: nationalpain.org/resources-pain-opioids-patient-harm#facts
More resources from them: nationalpain.org/resources

California state guidelines on opioid prescription: (see page 14 on tapering)
www.mbc.ca.gov/Download/Publications/pain-guidelines.pdf -this one may be a bit hard to read, but it talks about all of the good reasons to reduce a person's dosage of pain meds and why and when and how to do it carefully. Basically it needs to be done with you (the patient) making decisions together with the doctor.

AMA Ethics article about non-consensual tapering: journalofethics.ama-assn.org/article/nonconsensual-tapering-high-dose-opioid-therapy-justifiable/2020-08

This piece was written by a doctor who has experience with chronic pain — its a great read, but it is a little complicated. There are tons of links to studies that your doctor will appreciate, and there is a numbered list of things you can try saying. stefankertesz.medium.com/my-doctor-says-they-have-to-lower-the-long-term-opioid-what-can-i-do-what-do-i-say-b3d35776379e

All that said, there ARE reasons to want to taper opioids, especially for long-term non-cancer pain. They have side effects. So if I can get the client/patient on board with the goal of «pain management» over the goal of «getting my meds» then I want to get them adjuncts. I like the metaphor of a car with 4 flat tires — even if acupuncture (or whatever) alone isn't going to get you back to functional, then maybe acupuncture + a pain psychologist + massage + gabapentin will… This is where I heard that analogy: www.acpanow.com/#/ and they have peer support groups, iirc.
And this is a directory of pain psychologists and some resources: aapainpsychology.org/resources/

I also saved a link to this app, but I don't know if it's good and haven't talked to anyone who's used it.
Curable — The App for Chronic Pain (https://www.curablehealth.com/)
-app for coaching, some CBT, mindfulness/grounding exercises, meditations, visualizations, motor imagery, education, stories of others
-2 week free trial, then paid. $16/month, or $8/month if you buy a year.

As an anecdote, I have an older family member who lives with chronic pain and many other conditions. She's done great with buprenorphine patches, in part because they come with a pain management team (RN she can call when she has questions, and a doctor who regularly prescribes this med and suboxone) — really better than she ever did on oxycodone pills. So, definitely agree that it's worth suggesting callers ask their doctors if they know anyone who can do this and refer out.

I mostly manage opioids for GI and cancer clients. Here are some short- and long-term approaches I use, including some of what's been mentioned here.

In the short term, I encourage my clients to track their pain level (1-10) and medications by time of day. If they have the bandwidth, I also encourage them to note the pain location and a description (sharp, searing, dull, etc.). When they talk about their pain with their providers, I may ask them to share what their pain has stopped them from doing (if they shared something relevant with me beforehand). Sharing this information with providers can help them get a fuller picture when making their assessment and prescribing.

I also encourage clients to be completely honest about their (legal and illegal) drug use; to obtain and learn how to use Narcan; and to prepare/share a list of how they manage their pain besides medication (e.g., meditation, therapy/support, yoga, TENS machine, acupuncture, etc.). Showing all the pathways the client has taken supports their valid requests.

It's critical I make clear to the provider which medications have been stopped or are inaccurate. Sometimes a clerical error for a drug that is no longer taken is enough to make a provider hesitant to prescribe more or something else. This is where I step in as an advocate to speak for the patient to share if a script was never picked up, whether the supply was completed as expected, or details on the dosage, frequency, and situation when a specific drug did/did not work.

When the client is struggling to understand why they are having trouble getting a prescription, I will share information or provider chart notations from the client's chart; for example, when they are outside the average on their ED screening scores. This can help clients understand where providers may be coming from.

Like Ilene, I've found that in the long term, connecting clients with a pain management, palliative, or hospice care provider TEAM is the best long-term option. I've found they are more knowledgeable and willing to discuss not only opioid drugs but also the medications to combat the side effects of opioids and other medical and non-medical options, including, but not limited to, mental health and cannabinoid products. In addition, they can best help manage tapering down and the side effects of withdrawal.

Why a team? So clients have access to multiple providers as needed, may be eligible for home visits, and often have a more responsive 24/7 line to call. This is also helpful when the patient has to go to the hospital or their PCP in crisis because there's a record that they have a palliative care team that can advise them and that someone specific is managing all pain medications.

Finally, when working with the provider and client, I will advocate for or ask, «What else?» Alternative options I've pursued or had patients prescribed include lidocaine patches, a nerve block, prescription NSAIDs (e.g., celecoxib and Toradol), and anti-anxiety medications.

I have taken my client to a «pain» doctor who is much more knowledgeable and empathetic to this situation. This doctor recommended Gabapentin as an alternative but did not stop the use of Oxy completely. Together we monitor the use, and it has been less and less use though still not off completely. Not sure if this is helpful but it is what I did, and we are still working on it…

Hi Lola. Welcome! I'm a PhD in Tucson AZ, degree in Pathology. I struggled with genetics a lot!!! I don't really focus on rare diseases, although I will tackle almost any condition.
I grew up in Des Moines and know what a great school U of Iowa is. I give you a lot of kudos for keeping at your degrees at the same time taking care of your mother. You will be great at advocacy.
Best of luck in your future endeavors.
-Nancy
StepwisePatientAdvocacy.com

Welcome to this space! Your expertise is greatly needed and I look forward to seeing where your business takes you.

Lola,
Thanks for sharing your unique background! we're so glad you're here
could i suggest adjusting the title of your post to help others know your unique niche? i can edit it for you if you prefer.

Great post! I am also in SWFL and see this too often with our seasonal residents. Thanks for sharing

carolanne,
thanks for making htis post/!
can i suggest that you also submit it as a blog? it will get seen by a different readrership there, and we'd love to have it in both places.

I know patients using this approach. I understand it is expected to be less effctive because some of the cromolyn is too close to meals. but people who can't do 4oz at a time or have otherchallenges around the normal dosing.

I take mine in gatorade (can't do striaght water) but do the 4 oz liquid to 1/2 tube cromolyn 4x daily which works for me.

Hi, I’m Mel, a board-certified Adult-Gerontology Acute Care Nurse Practitioner. I have 20 years of experience in endocrinology, intensive care, and diabetes management. I also have extensive personal and professional experience supporting individuals and families affected by dementia. I am based in the Chicago area and offer self-pay services; I do not accept insurance. I would be happy to partner if self-pay is an option for you.

Hi Xena,
I am not in the Chicago area but may be able to help virtually if the clients are in a position to do so. Feel free to reach out if I can be of assistance.

Hi Xena,

Thanks for reaching out! I live in a northern suburb of Chicago and have extensive experience with Diabetes Management.

I offer a 10-minute complimentary consultation to clients and work both in person and virtually. I'd love to discuss more to determine if I'm a good fit for collaborating with you and your client.

I'm getting married in 2 weeks and will be available to take on new clients after 9/7.

Meanwhile, I hope you find some great advocates who can help!

Marilyn Kier, BCPA, BCTMB

Hi Rebecca,
I’m in Orange County and would love to connect. I tried emailing you but it was returned as undeliverable.
My email is amy@entrustedhealthadvocates.com

hi Rebecca! We've got quite a lineup of advocates in the LA area.
I'm used the PA360 message feature to these advocates and encourage them to join this post. you can also do the same- use this search,and use the 'write a mesasge" to connect to any advocate.

gnanow.org/advocates?search_type=speciality_id&speciality_id=18&locations=Los+Angeles%2C+CA%2C+USA

I am in CO, I’d be happy to connect.
I specialize in cancer and survivorship.
There is a webinar I am doing that you might be interested in participating as well, since it involves billing.

Here is the link:
triagehealth.org/webinars/medicaid-changes-patients/

~Katherine

this taught me a lot about GLP-1, but not enough.

THANKS fo rsharing!

also — there is a NAHAC webinar around GLP1s this week:

www.facebook.com/groups/616959243721609/posts/1379504134133779

Thanks so much for sharing this, Renea!

CONGRATS TERRY!!!

www.facebook.com/share/p/18MJ57Drmm/

Hi, Lorna! We've just started a quarterly gathering of the social workers that are plugged into GNA now. Our next meeting is in October. Check an eye out on the GNA closed FB group as well as here. Welcome!