#cirl asks

I don't wear them myself so I can't recommend any but I'm putting this out to the community (and I'll reblog on @disabilityaidpositivity as well to hopefully get you some answers).

I also found these articles:

The Best Compression Socks on NY Times

The 8 Best Pairs of Compression Socks We Tried... on Everyday Health

sincerely,

someone recently diagnosed and confused

Hi, thanks for the ask! I'm going to call you 'POTS questions anon 🧡' in case you want to send more asks in the future.

I can't answer all these questions but I'll do my best and I welcome the community to add on with their own experiences in the comments or reblogs...

> can POTS get better? does it usually get better or worse over time?

Yes, it can get better for a while, but it (probably?) won't go away entirely.

Everyone is different so some people are more stable while others have a more waxing-and-waning experience of POTS. Some people might have periods of 'remission' but a lot of people don't seem to get that from what I've read.

According to the Cleveland Clinic, "POTS symptoms may come and go for years. In approximately 80% of cases, the condition improves, but many people have residual symptoms."

> does physical therapy help POTS or can it make it worse?

I'm not sure if you mean physiotherapy or just physical activity/exercise so I'll answer both briefly...

Physiopedia says physiotherapists can help with patient education – "the patient’s understanding of respiratory physiology, specifically respiratory control and normal breathing pattern" and "the mind—body link and how external factors such as anxiety, stress and lifestyle influences breathing patterns resulting in breathlessness" as well as breathing re-training – "breathing control at rest and during activity" and "controlled pause technique."

This article (Fu & Levine) from 2019 suggests certain types of exercise are better: "The use of horizontal exercise (e.g., rowing, swimming, recumbent bike, etc.) at the beginning is a critical strategy, allowing patients to exercise while avoiding the upright posture that elicits their POTS symptoms."

And this meta-review (Rocco et al.) from 2024 states "The majority of the studies stated aerobic exercise training significantly improves symptoms in most of the patients with orthostatic intolerance, reduces the frequency of syncope, enhances patient quality of life, and improves autonomic balance as assessed by heart rate variability analysis and cardiorespiratory endurance. Short-term exercise training was found to boost physical fitness and cardiorespiratory responses in patients with POTS... However, more research is needed to identify the optimal exercise rehabilitation program for this patient population."

This printable resource might be handy on the topic of exercise with POTS.

Keep in mind that if you have other conditions or you or your doctor think you do, the same type of exercise regimen may not be appropriate. And pacing is key; don't go too hard too quickly.

> why are there options of knee high compression socks, thigh high and waist high compression tights? how do they affect you differently?

Multiple options are available because "significant blood pooling occurs not only in the lower legs but also in the splanchnic circulation, the large network of veins in the abdomen. Therefore, waist-high compression tights or a combination of thigh-high stockings and an abdominal binder are often superior to knee-high socks alone. Full abdominal and lower body compression has been shown to be more effective at reducing heart rate and maintaining stroke volume during upright posture."

But not everyone can tolerate thigh-high or waist-high. If you can, talk through the options with your doctor, physio, or whatever health professional is available to you (in some places, even pharmacists may specialise in compression garments).

Also check out this page for when compression tights should not be used.

> can massage or any other alternative treatment help?

I can't find any recommendations for massage for POTS that aren't from massage businesses. But maybe someone else can jump in and give their experiences here?

A lot of resources seem to mention compression, extra salt, extra fluids, and a healthy and balanced diet are the key alternative/complementary treatments.

But physiopedia mentions "Acute blood volume expansion has been shown to be effective at controlling the heart rate and acutely improving symptoms. Jacob et al. found that 1L of physiological saline infused intravenously over 1 hour decreased the orthostatic tachycardia immediately following the infusion."

And the Australian POTS Foundation says "Although not highly evidenced, supportive therapies such as vagal stimulation, breathing techniques, mindfulness, and other mind-body approaches may help with patients to cope with symptoms."

> what drugs are good for POTS and what are the risks of them?

The meds that are used for POTS symptoms may change depending on region but this is what I found for basic info...

This page by POTS UK looks at beta blockers, how their used, and side effects

The Australian POTS Foundation website talks about five meds: "Ivabradine: Lowers heart rate by slowing activity in the heart’s natural pacemaker (the sinoatrial node) without lowering blood pressure. It’s often preferred in POTS when heart rate control is needed, as it has little impact on blood pressure. Propranolol: A short-acting beta-blocker that reduces the effects of adrenaline, helping to lower heart rate and blood pressure... Fludrocortisone is often recommended in POTS management. It is a synthetic corticosteroid that helps the kidneys retain sodium and water, which increases blood volume and may improve orthostatic intolerance. However, there are no clinical trials confirming its effectiveness... Midodrine is listed by the TGA and approved for orthostatic hypotension due to autonomic dysfunction. It works by constricting blood vessels through selective alpha-1 stimulation, which raises blood pressure and can improve orthostatic symptoms. Although not specifically approved for POTS, it is often used in practice under specialist guidance. Phenylephrine is also an alpha-1 adrenergic agonist. By constricting blood vessels, it increases blood pressure and may help relieve orthostatic symptoms, though its role in POTS management is less well established."

This page goes through a bunch of medications that can be prescribed off-label for POTS

In addition, though, this review (Campbell et al.) from 2020 concluded that "a balance of pharmacological and non-pharmacological methods provides the best approach to symptom management in POTS, however; more research is necessary."

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These are all pretty brief answers and there are so many more resources out there so I encourage you to do more searching and talk to as many healthcare professionals as you can (remember, you have a right to ask questions and part of their job is to inform you). I also encourage other people who know of more resources, or have personal experience, to jump into the reblogs and comments. I'll also be using the questions you have asked here to guide me as I search for more POTS resources in the future.

Hi! Thanks for the ask!

You've left this quite open so I've found a few resources that give a bit of an overview of Gilbert syndrome and then if you have any more pointers or specific questions, send in another ask and I'll do some more searching. I've also added Gilbert syndrome to my list of conditions to keep a watch for.

One thing I did notice is that Gilbert syndrome is called a "harmless" condition by at least one source but I'd like to hear the perspective of people who live with it so if anyone feels comfortable sharing please jump into the comments, reblog, or send an ask (anons are always open).

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What is Gilbert syndrome? The Mayo Clinic says it's "a harmless liver condition in which the liver doesn't properly process bilirubin" in this web article. This source covers symptoms, causes, and how the syndrome may increase the side effects of certain medicines.

The Mayo clinic page and this page both note that you may have a higher chance of developing gallstones.

The most common and noticeable symptom is jaundice (yellowish tinge of the skin and the whites of the eyes).

This Cleveland Clinic page lists other symptoms that some people experience.

Gilbert syndrome is a genetic condition.

Gilbert syndrome is often discovered by accident (e.g. a blood test shows raised bilirubin levels). One third of people with Gilbert's syndrome don’t have symptoms.

Gilbert syndrome itself doesn't need treatment and there are "no specific dietary or lifestyle changes to follow". (although some sources do suggest limiting alcohol)

Many sources note that being ill, menstruating, fasting or skipping meals, or exercising too much can increase your level of bilirubin if you have Gilbert syndrome.

This source points out that "Crigler-Najjar syndrome is a similar but much rarer genetic disorder that also affects the breakdown of bilirubin ... a more severe syndrome that may require a liver transplant before it results in brain damage or death. Genetic testing may be used if your doctors aren't sure if you have Crigler-Najjar syndrome..."

This source (same page as above; different section) also lists some medications that may be affected by Gilbert syndrome.

This source suggests questions to ask your doctor if you have concerns that the doctor has not ruled out other conditions and/or if you don't have the typically mild symptoms.

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I need to find more but there is this one...

The Bedbound Activity Masterlist(s); it's got three blog posts full of ideas.

There's also this post that has tips for knitting if you have chronic pain.

And you've probably already thought about the standard suggestions like colouring and various crafts but have you considered painting rocks or making bottle cap badges (see also: this link)? Or try digital collage – sign up for a free Canva account (which you can use on any device) or use one of the many free online programs and just mash some pictures together. It might not be a long-term hobby but it might add some entertainment.

I will be looking for more because I've realized this is a gap in my posts and I understand the boredom and frustration. I will tag them all as #housebound resources and #bedbound resources if you'd like to follow those (or for anyone coming to this post in the future).

And if anyone has any recommendations, please feel free to send me a link or tag this blog ✌️

I’m not super new to being disabled, but I have no diagnosis bc every new provider I see blames all of my (very physical) symptoms on my depression. They don’t even change this when I mention that it’s well managed and that my psychiatrist thinks that’s bs.

It’s been two years of managing everything on my own, I’m unemployable, unable to receive benefits due to the above, have zero support network, and am basically bed bound at this point. I now also have a stomach ulcer bc I’ve been taking so many otc pain meds to be able to move at all, sleep, and eat. The only real advice I’ve gotten is to stop taking them, which isn’t an option for obvious reasons.

I’m just looking at everything (US based here) and unable to see a way forward where I don’t end up unhoused within six months. I don’t know what to do, bc from my perspective I’m trying everything and it’s just not working at all.

Hi,

I'm so sorry to hear you're dealing with all of that! And having no support from doctors just makes it so hard!

First, I want you to know that this is (unfortunately) not an uncommon experience. I say that so that you know that it's not *you*; it's 100% the doctors' fault.

As for resources, I'm not completely clear on what info you're looking for so if I miss the mark here, please let me know and I'll try again. But I can see a few points where I can maybe provide a bit of advice/resources...

You mention you're seeing a psychiatrist who has assured you that your physical symptoms are not caused by psychological factors. Can they write a letter stating that? Can they refer you to a doctor they know and trust?

You mentioned you're developing a stomach ulcer due to the pain relief meds you're taking. You've maybe already been told this but it's surprising how many people don't know... You should *always* take NSAIDs (e.g. ibuprofen) after eating food. I've been told by pharmacists and doctors that if you can't eat something substantial, something is better than nothing, even just some yoghurt will help.

For some of the rest of what you're dealing with, I think this resource might be helpful for you – it's a collection of guides that cover how to live a great disabled life (e.g. getting free transportation, food stamps, and more), a guide on what to say when denied for disability aid/accommodations, how to be poor, how to be homebound, a Master List of Disability Accommodation Letters For Housing, and a guide on dealing with debt & disability. Most of it is written for people in the USA.

If you have the energy for browsing, you could also check out #housebound resources, #bedbound resources, and the #USA🇺🇸 tags on this blog.

You're welcome to send another ask if I've missed what you were wanting help with, or if you just have more questions in the future. I'm always happy to try to help.

That's interesting! Thanks for the heads up!

other things you could do is generally like, how to deal with people who say stuff like "you're too young to have that" or "you don't look disabled" etc. i find a lot of us younger disabled folks get told that a lot and don't know how to respond in that situation

Hi, thanks for the suggestion!

I would say celiac counts as a chronic illness. I'll have a look for more resources on this topic soon but have you seen what I've already posted under #Celiac resources?

It might be harder to find resources on how to deal with people making comments and not believing in us but I'll do my best. This is a really difficult thing to handle, I know. There is this article that could be helpful in the meantime; it doesn't directly answer how to deal with what you're asking about but some of the tips could be adapted?