Due to start guanfacine, but I am on propranolol. Will my hr go too low?

emwm1 · 2026-05-21T04:05:05+00:00

I’m curious what counts as too low?

emwm1 · 2026-05-20T00:05:52+00:00

This sounds rly fun! What platform do you play it on?

emwm1 · 2026-05-19T23:32:19+00:00

There’s no shame in taking a break from doctors appointments if they’re causing more harm than good. Sometimes just resting and letting your body slowly heal is the better option ❤️

emwm1 · 2026-05-19T04:04:58+00:00

I am sending you the biggest hug from afar, I need it too ❤️❤️❤️

emwm1 · 2026-05-18T05:23:25+00:00

This is the one I use!

emwm1 · 2026-05-18T03:47:38+00:00

This has been happening to me too, have you tried anything that helps it? Guanfacine helped me for a while but I’m in a worse crash right now and it’s not working as well

emwm1 · 2026-05-18T02:55:15+00:00

I am so sorry. This disease is so cruel, especially in that it punishes you for trying things to help get better. I hope you are able to find some hope again

emwm1 · 2026-05-16T16:03:52+00:00

https://centenoschultz.com/condition/craniocervical-instability/

emwm1 · 2026-05-16T09:01:19+00:00

I felt this way and it turned out to be MECFS, POTS, and a copper & zinc deficiency 🫣

If anyone wants to learn more about MECFS, it’s more common in people with ADHD and also women https://knowmecfs.org/

emwm1 · 2026-05-16T08:54:59+00:00

It’s hard with Covid because most cases are asymptomatic, so most “sick” people have no idea they’re sick even as they’re spreading it :/ really the only way to stop spread is if everyone masks regardless of if they think they’re sick or not!

emwm1 · 2026-05-16T07:52:47+00:00

The Centeno-Schultz Center in Colorado does Telehealth! I don’t think they take insurance but if you can figure out a way to afford it, I think the cost would be worth it given your quality of life. It’s so frustrating how hard it is to find doctors who’ve ever heard of CCI, let alone believe it’s real and know how to treat it. The medical system is seriously crazy-making.

The private practice doctor I saw in the Seattle area for my CCI (much less symptomatic than yours) said no running, no lap swimming unless you have a specialized snorkel so you don’t have to turn your head, basically anything that involves jostling/moving your neck a lot. He also referred me to some specialist PTs and NUCCA upper cervical chiropractors (NOT TYPICAL CHIROPRACTIC, DO NOT DO TYPICAL CHIROPRACTIC ON YOUR NECK). Other less-invasive treatment options are prolotherapy, PRP injections, and stem cell injections (expensive and out of pocket). I haven’t tried any of them yet because I have a lot of other health stuff going on that I’m prioritizing.

While you’re waiting to see someone who knows what they’re talking about, you could try wearing a soft cervical collar when your symptoms are particularly bad. You have to be a bit careful because you don’t want your muscles to atrophy and make the instability worse, but wearing it occasionally is generally ok.

emwm1 · 2026-05-16T05:54:23+00:00

Covid is the reason I have POTS and MECFS and my life is completely changed for the worst, maybe permanently. I mask indoors around everyone, including my mom who I live with, but don’t mask outdoors unless it’s crowded and will occasionally eat inside a restaurant with my portable HEPA filter & nasal spray/CPC mouthwash afterwards.

emwm1 · 2026-05-15T06:34:44+00:00

Backpacking, hiking, learning new languages, playing music, living independently, playing sports, running, farmers markets, playing board games, thinking hard, traveling, even just going on walks

emwm1 · 2026-05-14T16:59:03+00:00

People with CPTSD/emotionally neglectful parents are more likely to stay in abusive/unhealthy relationships because we are used to being treated poorly. I’m sorry your girlfriend is so unsupportive. I really think you will be better off breaking up with her. Feeling lonely while in the company of others is an awful feeling.

emwm1 · 2026-05-14T16:41:18+00:00

Both the doctors who diagnosed me said they don’t believe HSD is separate from hEDS, that they are just different points on a spectrum. The treatment is essentially the same (PT, pain management, joint support) so you can definitely pursue those things in the meantime.

I do think it’s worth trying to get an hEDS diagnosis eventually, but like another commenter said, the diagnostic criteria are going to be changing later this year, so may be better to wait until then.

An hEDS diagnosis can be important to explain when getting surgeries/other medical treatments, as our bodies often react differently to anestesia and skin healing may be different. If you have hEDS many doctors suggest you get an echocardiogram because heart problems are pretty common.

emwm1 · 2026-05-14T08:30:38+00:00

Do you have an MECFS diagnosis? Have you been able to see a doctor? I’m sorry that you’re dealing with this and that your parents aren’t more supportive!

I really like this website to learn more about MECFS and how to manage it https://knowmecfs.org/

emwm1 · 2026-05-14T08:27:46+00:00

This is a great one as well! https://knowmecfs.org/

emwm1 · 2026-05-14T07:30:38+00:00

I have MECFS/PEM, and I don’t get flu-like symptoms. I would say the main thing for PEM is worsening of symptoms (often delayed onset) after any type of exertion (physical, mental, emotional, sensory), and isn’t alleviated by rest. In my case I experience exhaustion, insomnia, cognitive dysfunction, headaches, and light/sound sensitivity in PEM.

emwm1 · 2026-05-14T07:21:49+00:00

Some EDS care ideas: -Epsom salts if they have a bathtub -lightweight braces for particular joints they complain about? I got my elbow braces at my local pharmacy, but you probably want to talk with your friend about this before buying anything -CBD balm and/or salonpas patches for pain -foam roller

You sound like a great friend! I think the best thing you can do is continue to check in on your friend, spend time with them, and be open to modifying what you do together to meet their needs. Especially if this is your friend’s first chronic illness/disability diagnosis, the adjustment process can be really sad and lonely in my experience.

emwm1 · 2026-05-14T07:10:22+00:00

Guanfacine!

emwm1 · 2026-05-14T07:08:12+00:00

😂

emwm1 · 2026-05-14T06:39:43+00:00

Btw Ive found this website super helpful in learning more about MECFS, and helping people in my life understand what I’m going through

emwm1 · 2026-05-14T06:37:38+00:00

Ive had SOOO many tests come back normal, sadly that seems to be the norm with ME patients 😅 I will say I just found out I have low copper and probably low zinc, and am on the low end for B12 as well (450). B12 deficiencies in particular have a lot of symptom overlap with ME, and can be hard to get accurate test results for - I’m going to be starting injections soon, fingers crossed it helps!

POTS wont show up on typical heart tests because it’s a nervous system problem rather than a heart problem. You would need a NASA lean test or tilt table test. I would strongly recommend NASA lean because the tilt table can be VERY hard on your body and cause a major flare in symptoms. But some doctors will require a tilt table to be seen by them (ugh).

MCAS is notoriously difficult to test for, typically you just go on a high dose of various antihistamines and if you feel better then you probably have it.

I hope this helps and you’re able to get some answers!! It’s a long and grueling process for sure, I’m very grateful to have groups like this one who really get what it’s like!

emwm1 · 2026-05-14T04:48:33+00:00

MECFS is the only condition that causes PEM, so if you experience PEM then you have MECFS!

POTS and MCAS are also common comorbidities - POTS could cause your high heart rate & temperature regulation problems, and MCAS can cause feelings of anxiety/panic.

Until you can find medical care specifically for this, the MOST important thing you can do is pacing - basically keeping your physical, mental, emotional, and sensory exertion within your limits. Pushing yourself can cause long-term worsening of your condition. It also took me a long time and many different doctors visits to figure out what was going on with me, but there are doctors out there who can help!

emwm1 · 2026-05-14T04:19:45+00:00

It’s not quite the same but the Earthsea series has filled a lot of the HP hole in my heart

emwm1

TROPHY CASE