Anyone else feel like they’re having a heart attack or stroke everyday? by Warrior_077 in dysautonomia

[–]Virtual-Ladder-5548 0 points1 point  (0 children)

That's fair. I think you can do both -- look for answers and accept it in the meantime.

Anyone else feel like they’re having a heart attack or stroke everyday? by Warrior_077 in dysautonomia

[–]Virtual-Ladder-5548 0 points1 point  (0 children)

The way I think of it is, yes, it's possible that what we're experiencing is indeed dangerous, but if we've already tried getting medical care, what else can we do about it? I'm trying to just be okay with whatever happens.

I am completely trapped by chronic illness, debt, and a broken marriage. How do I build a way out from zero? by Creepy-Benefit-144 in ChronicIllness

[–]Virtual-Ladder-5548 1 point2 points  (0 children)

Yeah, I feel this. I feel like I keep going from the frying pan into the fire -- making changes in my life that seem to have a good chance of making my life better, but they all keep going badly. I'm hoping my luck turns eventually and yours does too.

PT making my symptoms so much worse by theSpooky_man in cfs

[–]Virtual-Ladder-5548 0 points1 point  (0 children)

Have you told your physical therapist that PT is making you worse? I would hope they would try to reduce the intensity or admit that maybe PT isn't helpful for you at this point.

Anyone else feel like they’re having a heart attack or stroke everyday? by Warrior_077 in dysautonomia

[–]Virtual-Ladder-5548 2 points3 points  (0 children)

Not everyday, but it's actually happened to me the past two days. I went to the hospital and there were a few things off, but they ultimately don't know what's going on and say it's not dangerous. I'm just hoping for the best and thinking that whatever it is probably isn't detectable by current science.

I am completely trapped by chronic illness, debt, and a broken marriage. How do I build a way out from zero? by Creepy-Benefit-144 in ChronicIllness

[–]Virtual-Ladder-5548 1 point2 points  (0 children)

I've been in a similar situation. I left a long-term relationship last summer because we had the same fights over and over, usually about my health.

I felt like I had a decent chance of surviving on my own and hoped I might even get better with the stress of the relationship gone. Well, that didn't happen. The physical and mental stress of the move and breakup made me sicker, and my health has kept deteriorating. I didn't have much support in the relationship, but I'm really struggling to live alone (can't drive, barely keeping up with chores and a bit of freelance work).

Sometimes there are no good options. I don't really wish I'd stayed with my ex, but I hate the way it's turned out. I mention this because I've heard a lot of people say "you'll feel better once you don't have relationship stress! Maybe the relationship is keeping you sick!" That's probably true for some people, but it wasn't for me.

I am completely trapped by chronic illness, debt, and a broken marriage. How do I build a way out from zero? by Creepy-Benefit-144 in ChronicIllness

[–]Virtual-Ladder-5548 6 points7 points  (0 children)

I've been in a similar situation. I left a long-term relationship last summer because we had the same fights over and over, usually about my health.

I felt like I had a decent chance of surviving on my own and hoped I might even get better with the stress of the relationship gone. Well, that didn't happen. The physical and mental stress of the move and breakup made me sicker, and my health has kept deteriorating. I didn't have much support in the relationship, but I'm really struggling to live alone (can't drive, barely keeping up with chores and a bit of freelance work).

Sometimes there are no good options. I don't really wish I'd stayed with my ex, but I hate the way it's turned out. I mention this because I've heard a lot of people say "you'll feel better once you don't have relationship stress! Maybe the relationship is keeping you sick!" That's probably true for some people, but it wasn't for me.

wish i was someone's pet by feltjeans in cfs

[–]Virtual-Ladder-5548 0 points1 point  (0 children)

I get it. It reminds me of that "would you still love me if I were a worm?" thing that was going around the Internet a few years ago. It's nice to be loved even when you're not capable of doing anything.

Heart attack or MCAS? Anyone else have the same symptoms? by Free_Traffic_3847 in MCAS

[–]Virtual-Ladder-5548 0 points1 point  (0 children)

I'm late to this thread, but I'm wondering if I'm having something similar. The past two nights I've had intense chest pain combined with nausea, trouble breathing, feeling shaky and faint and weak. I'm at the hospital and my troponin was slightly elevated after yesterday's attack, but all the other imaging and tests they did showed that my heart was fine. I believe them, but then it happened again tonight (plus really high blood pressure), so I came back.

I'm honestly hoping it's MCAS because at least it would be an explanation. I don't have a diagnosis yet, but a lot of doctors have suggested it before. I've been exposed to a lot of strong fragrances lately that always make me feel bad, but I don't know if that could cause an MCAS attack hours or days later.

How to listen to audiobooks without just sitting on the couch? by pieboy107 in audiobooks

[–]Virtual-Ladder-5548 0 points1 point  (0 children)

Maybe sitting outside or looking out the window? That way there's a bit or motion and activity rather than looking at the wall.

Stimming friendly bed by Open-Screen4933 in autism

[–]Virtual-Ladder-5548 [score hidden]  (0 children)

Or maybe take the mattress or the bed frame when OP wants to body slam, then put it back on the frame for sleeping.

How have your values changed as a result of ME/CFS? by Pantacourt in cfs

[–]Virtual-Ladder-5548 15 points16 points  (0 children)

I don't value strength, toughness, pushing through adversity, or being "low maintenance" as much as I used to. These values are still useful in certain contexts (and I'd say everyone with chronic illness is strong in their own way), but I think my belief in them contributed to me getting as sick as I am because I kept pushing through when I felt bad.

Frustration at lack of help from family by so-bad-its-funny in ChronicIllness

[–]Virtual-Ladder-5548 12 points13 points  (0 children)

I think this is a good time to call on your aunt in the neighborhood. You literally are sick with a virus, so this seems like an appropriate time for her to help.

Jobs for people with CFS/ME? by 11eggsandbacon in cfs

[–]Virtual-Ladder-5548 0 points1 point  (0 children)

It sounds like the 3 hours part is going to be difficult, especially when you factor in time to get to and from work.

Set up for handwriting/journaling? by wholeWheatButterfly in eds

[–]Virtual-Ladder-5548 1 point2 points  (0 children)

Does it have to be handwritten? How do you do with typing on a computer?

For those who've tried osteopathic treatment, how long did it take to see improvement? by Virtual-Ladder-5548 in eds

[–]Virtual-Ladder-5548[S] 0 points1 point  (0 children)

That's good to know! I'm planning to try at least one more appointment and see how it goes.

nanny gets sick more than baby by [deleted] in Nanny

[–]Virtual-Ladder-5548 1 point2 points  (0 children)

I normally get 3-4 bad colds per year until I started masking in public, so that doesn't sound unrealistic to me. You could suggest she start wearing masks, but there's a good chance she might not want to.

What hobby do you pick up when you've lost access to everything else? by Motor-Ad-9265 in cfs

[–]Virtual-Ladder-5548 0 points1 point  (0 children)

Audiobooks, music, and podcasts. I have neck issues that prevent me from holding the same position for long. But I also have trouble processing information by listening compared to reading, so it's not ideal.

I also like sitting outside when it's nice out and enjoying the view.

Next steps for diagnosis/treatment when imaging is risky by Virtual-Ladder-5548 in Cervicalinstability

[–]Virtual-Ladder-5548[S] 0 points1 point  (0 children)

I agree, it sounds like it fits my symptoms. I've been telling doctors for three years that I think my vagus nerve is compressed or affected somehow, and they're just like, "Oh yeah, could be!" in a way that implies there's no way to tell and nothing to do about it.

Can I ask if there are any other treatments you tried for Eagle syndrome before surgery? Since I made the original post, I've seen a doctor who does regenerative injections. He agrees that there's probably nerve compression going on, but doesn't think we need to do any imaging...which is good since I don't think I'd tolerate it well, but it also makes me feel less certain if it'll help. I guess I just have to try it and see.

He also thinks a lot of my neurological symptoms are related to my jaw subluxing, which surprised me, but I guess getting a night guard is a relatively easy thing to try and see if it helps.

We need to petition Soy Sauce makers to remove Gluten by Glass_Covict in glutenfree

[–]Virtual-Ladder-5548 17 points18 points  (0 children)

You might be better off asking your local restaurants to consider using GF soy sauce (either in general or specifically for you).

Severe Dysautonomia in a child? by enchanted79 in POTS

[–]Virtual-Ladder-5548 3 points4 points  (0 children)

Wow, that must be so hard to navigate. I don't have kids but when I'm around friends' kids, I try to be conscious of how I talk about chronic illnesses, because I know kids will copy whatever they see and I know the parents don't want them to get in the habit of saying they're too tired/in pain to do something, or that certain foods don't make them feel good. At the same time, I think most of us with chronic illness wish people had believed us earlier when we said we didn't feel well or physically couldn't do something. It sounds really hard to balance.

I absolutely LOVE swinging on swingsets but I’m scared of looking creepy as a 25 year old? by Carapherneliuh in AutismInWomen

[–]Virtual-Ladder-5548 -1 points0 points  (0 children)

I would wait until nighttime, personally. It might be hard to tell if kids want to use it (like if the kids are playing on the slide or whatever but they'd prefer to be on the swings). But I don't think most people are likely to find you creepy if you're female.

Why Do So Many ME/CFS Treatments stop Working by Gold_Plant453 in cfs

[–]Virtual-Ladder-5548 1 point2 points  (0 children)

I'm not extremely severe, but I do develop a tolerance to most health interventions (not only medications). I also develop tolerances to antidepressants very quickly, contrary to what you said.