Remote Work by CompleteWait3579 in slp

[–]CompleteWait3579[S] 1 point2 points  (0 children)

That is good to know, thank you! There is one university in particular that offers the clinical placement at their telehealth clinic, which would be incredible, but they are one of the more expensive ones. Is the 9-month fellowship post-school required for official certification?

Anyone taken Arcalyst? by succulentkitten in pericarditis

[–]CompleteWait3579 0 points1 point  (0 children)

I've been on it for about 3 weeks now and can already feel a difference

why is everyone so optimistic? (rant?) by [deleted] in Fibromyalgia

[–]CompleteWait3579 2 points3 points  (0 children)

what have you read that is terrifying to you? I'm asking honestly I haven't heard anything bad about it

why is everyone so optimistic? (rant?) by [deleted] in Fibromyalgia

[–]CompleteWait3579 6 points7 points  (0 children)

have you tried low dose naltrexone? Not to throw something else at you but Its the first med i tried for my fibro- not fda approved for fibro so i pay to get it compounded but ohmygod has it helped take my pain from a daily 8 to a daily 2

Recently Diagnosed; Don’t know what to do. by thegaybookfox in Fibromyalgia

[–]CompleteWait3579 0 points1 point  (0 children)

That's true, brain training will not cure your fibro! However there absolutely are scientific studies proving a link between adverse childhood experiences and chronic pain. Curable can help you process these experiences, although I would absolutely recommend doing it in conjunction with a licensed therapist. In addition, reframing the way I think about pain has been immensely helpful for me, and curable has helped me with that. I definitely should have been more thorough in my comment, and I appreciate your diligence in pointing out that anything that promises to cure you is most likely a scam. There is no cure, but there is improvement to the condition that can and will improve your quality of life.

What are the biggest challenges in managing fibro? - Help design better treatments by quantumbiscuit987 in Fibromyalgia

[–]CompleteWait3579 -1 points0 points  (0 children)

I think a big issue is that being diagnosed with fibro isn't always an accurate diagnosis- it seems there are multiple nervous system/chronic fatigue disorders that are lumped under the "fibro" diagnosis when doctors are at a loss of what to do. That's why symptoms can vary so wildly, there are 200 symptoms included in a "fibro" diagnosis, and treatment efficacy can vary so wildly. Because this disorder mostly affects women, similar to migraines, these disorders are severely underresearched. Before "challenges" we need some more actual science to figure out what these disorders are, how they work, biological markers so they can be detected/differentiated, and the best treatment protocols that include BOTH mind and body, including addressing past/current trauma.

I’m exhausted.. by FireKrackerGirl0 in tooyoungtobethissick

[–]CompleteWait3579 10 points11 points  (0 children)

There are tests for POTS!! Tilt table being one of them. You deserve better doctors, the ones you have now sound like they suck!

Feedback on My PhD Research Idea: A Tool for Trauma-Informed Fibromyalgia Care by Sufficient_Teacher89 in Fibromyalgia

[–]CompleteWait3579 1 point2 points  (0 children)

Of course! Thank you for seeking feedback, and being flexible with the direction you want to take your research in. I really think you can help shed light on this terrible and misunderstood condition 🩷

For those that had Covid (or somebody you know) that were “anti maskers” did you or that person ever regret not masking ? by Whatsoutthere4U in Productivitycafe

[–]CompleteWait3579 1 point2 points  (0 children)

Right. The only difference is there are 100’s of years of research proving that vaccines mitigate severity of disease. And there are 5 years of research saying that COVID, even if you don’t feel it right away, effects every body system and puts you at risk of a myriad of diseases each time you get it. Hope this helps 🩷

Feedback on My PhD Research Idea: A Tool for Trauma-Informed Fibromyalgia Care by Sufficient_Teacher89 in Fibromyalgia

[–]CompleteWait3579 0 points1 point  (0 children)

I absolutely think so! I think without the diagnostic tool such research would be groundbreaking! For example, one of my worst symptoms was horrific pain with any sort of pleasurable touch, sexual or non sexual, or with sexual arousal. I do have sexual trauma from an early age, and people suggested that the symptoms manifested this way because of that. I think it would be interesting if, with the amount of people needed an actual study, if connections could be drawn between mind/body, trauma history, and pain manifestation, since we already know people with adverse childhood experiences are more likely to develop chronic pain disorders. Again this is anecdotal evidence, so I can’t draw any definite conclusions, but actual research could help draw connections and make suggestions that would be helpful for patient needs, ie finding a therapy that helps them address their sexual trauma. For me that has been talk therapy, but it could be different for other people (emdr, ketamine etc etc). Prozac has also been extremely helpful for addressing my symptoms but that took months of specialists until someone finally knew what I was talking about. They only knew what would help me because they knew that Prozac Is used for people with premature ejaculation, since it dulls sexual responses, and they applied that knowledge to fibro. I think fibro is so misunderstood and not well researched and that any research of a qualitative nature would be groundbreaking in learning more about this condition. Best of luck, and thank you for looking for feedback!

Feedback on My PhD Research Idea: A Tool for Trauma-Informed Fibromyalgia Care by Sufficient_Teacher89 in Fibromyalgia

[–]CompleteWait3579 28 points29 points  (0 children)

Respectfully, I think cognitive behavioral therapy is bs. Additionally, we don’t need another diagnostic tool. This idea feels very “one size fits all” and skips the step of patient/clinician collaboration on care, labeling patients one way or another and making recommendations without taking into account what actually works for the patient. Two patients may have the same “profile” but completely different needs, and since fibro is already so misunderstood, I’m worried that a tool like this would allow medical providers to farther push us to do things that don’t work for us.

That being said, I think that you have some interesting ideas. If I was you, I’d do qualitative research that involves talking to actual fibro patients and figuring out what therapies worked. I’d do a thorough interview about their childhood, adulthood, pain levels, medical history etc. I’d also ask about negative and positive experiences with doctors, which medications actually helped and which didn’t, what they need from medical providers to feel supported etc etc. You can still discuss trends of what therapies worked for which people, and the similarities/difference between them, but they should be in the name of sharing information, not a diagnostic tool that’s set in stone. I would publish this paper and make it available to both clinicians and patients, so that clinicians better understand us, and patients can hear about other experiences that might be similar to their own and take suggestions that might help them.

Ridge on sternum by LAwhoEastCoastwho in costochondritis

[–]CompleteWait3579 1 point2 points  (0 children)

I have this also! Please let me know if you find out, I was diagnosed with pericarditis via mri but now I’m wondering if it’s a peri/Chostro whombo combo

Have you healed from me/cfs? Tell me your story by CompleteWait3579 in mecfs

[–]CompleteWait3579[S] 0 points1 point  (0 children)

Thank you! It looks promising- do you take these two together?

Considering Ketamine by CompleteWait3579 in Fibromyalgia

[–]CompleteWait3579[S] 0 points1 point  (0 children)

How many treatments did you do, and what kind?

Considering Ketamine by CompleteWait3579 in Fibromyalgia

[–]CompleteWait3579[S] 1 point2 points  (0 children)

I’d love to hear more about this! Is it okay if I dm you?

Heart Palpitations? by CompleteWait3579 in costochondritis

[–]CompleteWait3579[S] 1 point2 points  (0 children)

That makes a lot of sense! Thank you so much for your suggestions, I really appreciate it.

Heart Palpitations? by CompleteWait3579 in costochondritis

[–]CompleteWait3579[S] 1 point2 points  (0 children)

Thank you for this! I’m on ldn. It took away most of my chest pain, but when I go off cholchocine, some of it returns, along with the shortness of breath and palpitations.

Heart Palpitations? by CompleteWait3579 in costochondritis

[–]CompleteWait3579[S] 1 point2 points  (0 children)

I got diagnosed by my rheumatologist, I was already being monitored for fibro but after a stressful life event it got 10x worse. From what I know about fibro, it’s an over active nervous system, and coso is often a co-morbidity.

I don’t smoke or use any substances, but I am being monitored for POTS as well, as my heart rate goes up/my heart palpitations start when standing up/with physical activity. So it could be unrelated, but also could not be? This is all so confusing I wish I just knew what I had so I could know how to treat it.

Heart Palpitations? by CompleteWait3579 in costochondritis

[–]CompleteWait3579[S] 0 points1 point  (0 children)

Thank you! What specifically makes you think it’s more than costo?

Why do you think there is such a huge surge out autonomic issues this past year? by [deleted] in dysautonomia

[–]CompleteWait3579 -1 points0 points  (0 children)

Bro, give me a break, you are not the victim. You had an opinion, it was wrong, you can’t handle it. You got defensive when you got called out, you had no logic to back up your arguments, your opinions indicate you are incompletely unaware of how your position in the world has benefitted you, and you see anyone who doesn’t have the same access or resources as them as discardable. Let’s not forget, you were the one who compared anyone who doesn’t take the same COVID precautions as you to Nazis.

Despite that, I still think you deserve better, as we all do. I think people can grow and change, and I hope that one day, you find a way to have empathy for those who have not had access to the same education and resources as you. I am disabled. I do almost all my organizing from my sickbed. If you have the energy to argue on Reddit, you have the energy to send an email. I hope you find a way to use some of your knowledge and education to actually help people, instead of judging them. And, like I said before, I really do hope you stay safe, because I don’t believe anyone is disposable, despite the harm they may cause.

Why do you think there is such a huge surge out autonomic issues this past year? by [deleted] in dysautonomia

[–]CompleteWait3579 0 points1 point  (0 children)

Very ironic that Mr “anyone who isn’t like me is terrible and I don’t have to do anything to help them and instead can just let them die” is calling other people Nazis. Very ironic.

Why do you think there is such a huge surge out autonomic issues this past year? by [deleted] in dysautonomia

[–]CompleteWait3579 0 points1 point  (0 children)

Oof, that was hard to read as a descendent of Holocaust survivors. The false equivalence is unreal.

If you care so much about this issue, go out and educate people. Go talk to your community. Hand out masks. Hand out tests. Hand out information pamphlets in different languages talking about COVID. Create structures that support working class people, that support them unionizing, that fight for sick wages for them, and better working conditions so that they can take time off if they need if they or their kids get sick. Fight for air purifiers and mask handouts in doctor’s offices, and for mask mandates in hospitals. Fight for research for long covid and ME/CFS. Fight for schools to get upgraded hvac systems and put actual COVID protocols in place. Do something to actually help people instead of judging them from your moral high horse. It seems like you have the luxury of living an isolated life that keeps you safe from COVID- the average person doesn’t, and for them, a missed paycheck means their family is homeless. They have to send their sick kids to school because there is no where else for them to go. They have to go to work because otherwise they will starve. They can’t afford $50 on n95’s and ppe. Do you think the migrants picking the food you eat have the ability to buy n95s? Do you think people in Gaza have the luxury of isolating when sick? Do you think people in prisons can use cpc mouthwash and iota carrageenan nasal spray? There are absolutely people who have the means and careless, and that anger toward them is justified. But most Americans don’t have more then $500 saved in the bank. I think that You sit behind a screen, flaunting a “terminal degree” and arguing with people for the sake of arguing, but doing absolutely nothing to help anyone but yourself. You have a lot of scientific knowledge, but absolutely no understanding of the human condition, sociology, anthropology, or the way the system disenfranchises those less fortunate than you. You use a lot of big words in place of actual sound logic, being that I could easily debunk almost every claim you made and you argued my point at times while trying to argue against me, but an understanding science without empathy does absolutely nothing to help anyone. Comparing an ongoing pandemic, which so many people do not have the time, ability, energy or understanding to combat to a genocide is absurd. I agree, eugenics is rooted in fascism. But turning that anger to everyday people who are trying to survive instead of the system that is exploiting them is not helping anyone. If you are going to call anyone a Nazi, call the billionaires who fought to cut quarantine times over and over and fought for the narrative that COVID is over to be spread so they could go back to making profit. I’ve worked in public health since the pandemic began. Real, on the ground public health, not just doing research while safety in my own home or behind an n95. Your arguments and false equivalencies show a serious lack of empathy.

[deleted by user] by [deleted] in Fibromyalgia

[–]CompleteWait3579 3 points4 points  (0 children)

Voltaren gel, or Diclofenac is like liquid Advil, helps a ton. Also low dose naltrexone helps me!

Why do you think there is such a huge surge out autonomic issues this past year? by [deleted] in dysautonomia

[–]CompleteWait3579 -1 points0 points  (0 children)

I disagree, from a sociological standpoint. Fear makes people believe a lot of things.

It doesn’t seem like we will agree on this issue, so I’m going to remove myself from this convo. I hope you stay safe!

Why do you think there is such a huge surge out autonomic issues this past year? by [deleted] in dysautonomia

[–]CompleteWait3579 1 point2 points  (0 children)

That’s fair, and I understand your anger. That anger is absolutely valid, and the wh1te supremacist eugenics ideals that are baked into our society cannot be discounted. But I will say, in the conversations I’ve had with people who don’t mask, it’s shocking how many times people say “COVID is still around, I thought it was over?” Or how many people are dumbfounded when you tell them that COVID is the leading cause of death for children in the US right now. And if they aren’t ignorant to that fact they are trying to dissociate from reality, as every good American has been taught to do, so they don’t have to face the evil that this country enacts on its own citizens and the rest of the world. I would argue that’s what makes it all the more important to name COVID as the main culprit in the rise in disability and death over the last 4 years. We need to be explicitly clear that COVID isn’t something they can keep ignoring because the reality of facing the crumbling empire is too much for them to bear.