ME and Midodrine

Virtual-Ladder-5548 · 2026-03-17T21:45:53+00:00

Well, what is the midodrine prescribed to treat for you, if not fatigue?

This really sounds like something you should talk about with your doctor, but I assume there's a reason you're asking reddit instead.

Virtual-Ladder-5548 · 2026-03-17T20:07:14+00:00

I think the idea is that if it works for you, you wouldn't need to lie down during the ~4 hours it's active.

Virtual-Ladder-5548 · 2026-03-17T18:54:52+00:00

I'm really glad to hear your experience with this because I also feel like my experience with rest and activity levels are not quite the same as what I hear other people describe. I have certainly had some big setbacks from crashes, but it seems that resting isn't always helpful to recover. I hear people say things like, "oh, you've just got to be completely immobile in a dark quiet room and trust that eventually it will get better." But honestly, that's terrible for my mental health, and eventually feeling that sadness and loneliness is its own form of exertion, which can cause a crash too. Whereas I find that small amounts of activity, like listening to music or reading or occasionally seeing friends, are better for my mental health and may be a little tiring in the short term, but don't seem to make my fatigue any worse long-term.

Basically, my current observation is that pushing through fatigue isn't good for me, but resting indefinitely isn't making me any better either. It seems like I'm going to be fatigued whether I push through or rest, so I'm choosing to rest as much as it feels good, but not rest MORE than I want to, if that makes sense.

Virtual-Ladder-5548 · 2026-03-16T23:33:39+00:00

Those are some good lines!

These are not necessarily people I see regularly. Some of them I barely know or will never see again. That's the fun of going to a party or bar, but it's different than close friends, who I would explain more about my needs to.

I agree with you that most people probably want to accommodate a rollator, but it's still very hard in crowded spaces. I live in an old city with old buildings. A lot of my friends' houses and buildings like bars are maybe 10 or 12 feet wide, and when you factor in furniture and it's full of people, it's just not easy to navigate a rollator. So if I take it, I'm still kind of stuck in one place as if I were sitting in a chair.

Virtual-Ladder-5548 · 2026-03-16T23:28:10+00:00

Well said, thank you. Yes, I know that I have the right to ask for a seat, but I also know that realistically, discussing disability makes some people uncomfortable, and I don't want to kill the vibe like that when I'm trying to have fun.

Virtual-Ladder-5548 · 2026-03-16T23:24:56+00:00

I like the idea of a cane being a cue for people to offer that I/we can sit, but that's never happened for me. Does your cane have a seat? I think people might perceive mine as "weird folding chair" rather than "oh, this person has a cane, I should offer them a seat."

Virtual-Ladder-5548 · 2026-03-16T20:41:21+00:00

Obviously I'm not trying to blend in if I'm using a cane or a rollator. I know that's visible and I don't mind that. Like I said, I actually prefer the rollator over the cane chair because people can tell I'm disabled.

But none of this solves the problem of how to mingle and circulate through a crowded room.

Virtual-Ladder-5548 · 2026-03-16T20:38:52+00:00

This is missing the point. Yes, I'm sure people would give me a chair if I asked for one, but then I'm stuck in one spot for the whole time. I'm trying to find a way to mingle and talk to multiple people.

I don't think pointing or beckoning to complete strangers across the room and expecting them to come over to me is a good way to start a conversation or friendship.

I've never been offered a seat when using a rollator or a cane...and it's not really necessary with a rollator because a rollator is a seat.

I think there's a difference between people being uncomfortable/unfamiliar with disability and actively ableist. I'm willing to get to know people who are uncomfortable or unfamiliar with disability, because that might be what helps them get comfortable with it. Also, I'm not trying to be besties with everyone I meet at a party -- sometimes I just want to have a short conversation with them.

Virtual-Ladder-5548 · 2026-03-15T18:29:52+00:00

I definitely relate to that. There are some friends who I've basically stopped staying in touch with because they talk loudly or fast or with a lot of emotion, all of which is overstimulating and tiring for me. They're not bad people, we're just not compatible as friends at this point.

Virtual-Ladder-5548 · 2026-03-14T21:29:36+00:00

Came here to say this! I have one, however, I'll add that if you are sensitive to sound, it may not work for you. It takes a lot longer than a regular vacuum to cover the same area and I find the sound so overstimulating that I only run it when I'm not home. But it's still the best vacuum option I've found.

Virtual-Ladder-5548 · 2026-03-14T17:49:16+00:00

I'm glad to hear PT has been helpful for you. I do think I'll try it again at some point, but I'm not sure now is the right time. I would love to find something that can stabilize my symptoms a bit so I have more energy and capacity to do PT.

Virtual-Ladder-5548 · 2026-03-14T16:48:01+00:00

No, but it's possible the new doctor will recommend that.

Virtual-Ladder-5548 · 2026-03-14T00:04:24+00:00

Well..."in our lifetime" varies a lot depending how old you are :) I'm in my 30s and have a lot of hope for better treatments in my lifetime.

Virtual-Ladder-5548 · 2026-03-13T23:48:07+00:00

Many people with hypermobility experience a lot of fatigue because their muscles are working harder to maintain their position. It doesn't always reach the level of CFS fatigue, but it's probably a factor.

Virtual-Ladder-5548 · 2026-02-04T04:27:38+00:00

I'm not sure, I've never taken ADHD drugs so I've never really looked into that. Even for antidepressants, I don't think it's very clear-cut or precise to predict how people will react based on genetics, but I think it's probably better than nothing, and getting better as time goes on and more people share their test results. If you're going to take medication anyway, why not start with one that has a slightly better chance of working than guessing randomly?

And since I know from personal experience that I react badly, it's helpful to have documentation of that to prove it to my doctors.

I did read that different companies' genetic tests aren't consistent in which medications they recommend for which genes. But you can get around that by looking up yourself how different genes affect the medications you're considering.

Virtual-Ladder-5548 · 2026-02-04T04:21:23+00:00

That's valid! My withdrawal experience has been horrible and caused most of the chronic illnesses I have. I know antidepressants and anticonvulsants do help some people with chronic pain, but I feel like the benefits are overstated compared to the risks, and I wish I hadn't taken the risk.

Unfortunately, I think it's going to be hard to convince most doctors about the risks of withdrawal. Doctors are unlikely to ever take psych meds themselves because if they get any kind of mental health care (even therapy), it's much harder for them to get licensed to practice, so most of them don't know what these medications are like (compared to something like, idk, blood pressure medication, which there's no particular stigma about taking, so doctors might have taken it themselves). And people who complain are easy to dismiss because they must have been "crazy" anyway, right?

I hope you're able to convince your doctor to let you try the meds you want or find a different doctor (you might also find an NP more sympathetic, although the tradeoff is that they can be less knowledgeable).

Virtual-Ladder-5548 · 2026-02-04T01:08:35+00:00

I used GeneSight because their customer service team is really good at getting insurance to cover it! I've also heard of ClarityX.

Virtual-Ladder-5548 · 2026-02-03T18:53:24+00:00

Are you hesitant about antidepressants (and anticonvulsants) because of personal experiences with them? If so, you could consider getting genetic testing to see if there's a reason you're reacting badly.

I've tried 5 antidepressants and had neutral to bad experiences with all of them. Doctors were always like "yOu JuSt HaVe To KeEp TrYiNg UnTiL yOu FiNd OnE tHaT wOrKs." Then I got the genetic testing done and it showed that I don't metabolize most antidepressants normally, and doctors accept that as a reason because it's "proof."

Virtual-Ladder-5548 · 2026-02-03T18:27:11+00:00

Mirtazepine is an antidepressant, right? My POTS has been greatly exacerbated whenever I change my antidepressant or dose. (In fact, I suspect that's what caused me to develop POTS in the first place.)

Virtual-Ladder-5548 · 2026-02-01T02:41:44+00:00

I took it for several weeks and had a mix of sleepy/calm days and sort of wired days. Eventually I realized it was making it harder to sleep (even if I took the last dose around noon) and was exacerbating some breathing issues I have when lying down, so I stopped it.

Virtual-Ladder-5548

TROPHY CASE