u/secretfrogboy

I’ve posted here before about knowing when it’s time for a rollator. The conclusion was that if I was thinking about it, it was time. I still haven’t pulled the trigger.

I just can’t stop worrying about how I will be perceived. I can clearly get around without one. But I’ve seen others say it helped them save energy so they can do more as well as have a seat wherever they need it. I think I’d benefit from that. Walking with a cane doesn’t feel energy saving for me anymore. It helps stability some but that’s it.

I also live with family (hopefully not too much longer than another 8-12 months) who do not believe i’m disabled and I’m scared to even use my CANE around.

I don’t know what to do. I think that for longer outings a rollator could help me do more and save energy, but I don’t know if the mental/psychological damage from my family being cruel would make it worth it. I suppose I could try to hide it from them, but that’s hard.

I don’t know. I have no clue what to do. I don’t expect anyone to have answers, but some gentle encouragement or validation would be nice because I’m really struggling with this.

TLDR; know I may need a rollator/will benefit from one but unable to pull the trigger, family doesn’t believe I’m disabled, need advice/encouragement.

I’ve noticed lately I’ve been having stronger reactions to chemicals than I used to. As I’m writing this, I’ve just had a very puzzling reaction and I wanted to see if anyone else has had a similar experience.

My grandma poured some bleach down the drain. Across the house, I could smell it almost immediately. I’ve always been a little sensitive to bleach, but not like this. Ten minutes later I feel like I can taste it in my mouth and my lips are numb, and I feel extremely dizzy. I’m hiding in my room hoping to ride it out.

This has happened before, but only with more prolonged contact. I wonder if it’s like, mild anaphylactic symptoms? I can breathe just fine, it’s mostly the dizziness that’s frustrating. I’m wondering if I have MCAS also, which I’m sure could cause reactions like this.

Does anyone else relate?

TLDR: Having a pretty intense physical reaction to smelling bleach. Is anyone else very sensitive to chemicals?

ETA: My mom has a headache as well, so apparently it is strong enough even for her to feel gross. Still not as badly as me, though

I’m really scared I’ve fucked up my baseline. I’m hoping I didn’t.

A month ago, I moved. I was too broke to afford a mover. My mom and I did all of it ourselves. I didn’t think I could do it, but I did.

Then a week later, I had a trip to Portland for my birthday. I had so much fun. I went on two hikes. Almost fainted on the second one, but it was worth it. I used to be able to hike fairly easily (I’m not athletic, but I could find stamina when I needed it). I knew it would have consequences this time, especially after moving, but I’ve never been to the PNW before and I love nature. I wanted to find mushrooms. I did. They were so pretty.

I’ve been back home for almost two weeks, and my crash still hasn’t ended. I’ve never gone this long with this many symptoms. Everything hurts. And it’s my fault, I know it is.

What makes it worse is that the place I moved to (family home) is now an hour commute by train to work. My three in person work days are excruciating. I come home feeling like I got beaten and ran over by a freaking car. But that I can’t really avoid.

AND? I somehow pulled a muscle in my back by simply trying to stand from the couch, and now I can hardly walk. Fun.

I’m scared I’ve made it worse, permanently. I hope I’m wrong. I could have only avoided the trip, the rest I HAD to do. I figured the pain would be worth the joy, and I do think it was— but I’m anxious.

This sucks, nobody IRL understands, and I feel really alone.

TLDR: Pushed myself too far, and now I’m worried I lowered my baseline. Had fun at a cost. Feeling isolated and anxious.

I had to move home recently. My family is incredibly dismissive of my health and doesn’t take no for an answer when I say I can’t do something. If I do what they ask I struggle physically, but if I don’t I get verbally berated. I feel like I can’t win. I feel like I can’t even use my cane around the house without judgement. Has anyone dealt with a similar environment? What did you do?

Edited for typos.

Hey guys. I want some advice about mobility aids.

I have canes and use them occasionally, but in general I avoid activities I know I’d need seating/support/mobility aids for. As it gets hotter out, there’s things I want to do but worry about being able to do safely (I’m afraid of passing out/collapsing mostly, or expending too much energy).

Canes don’t help with this really because they’re less stable and don’t provide an option to sit. But I wonder if I’m not “bad” enough to justify a rollator. It’s not something I would need super often, but I think it could help me do certain events that I used to do before but am anxious to do now with how I’m doing.

For example, I love the ren faire. I’ve gone for years. But this year, I’m worried it’ll be too much for me. There’s not a ton of seating, it’s hot, and last year I didn’t use any aids, didn’t pace, and felt on the verge of passing out the whole time and got violently sick after. But I think if I had more support and was slow and gentle with myself, I might be able to do it.

I guess what I’m curious about is what was your moment you decided to try a rollator? How “bad” were you when you made that choice? I’m just in my head about if I really struggle enough to use something like that.

TLDR; struggling with the idea of maybe trying a rollator to improve my ability to go to things I can’t do anymore/cause flares unaided. Looking for advice on when others knew a rollator was a good next step for them.

Hi everyone. I’m looking for a little advice.

As title implies, I don’t have a ME/CFS diagnosis. I’ve come here hoping for some insight from those who are diagnosed. Lately I’ve been having a lot of symptoms with no explanation; my doctor suspects some kind of dysautonomia. I’m wondering if it’s more than that. I’m currently waiting to see a neurologist to hopefully get some further testing.

I am not asking anyone to diagnose me; rather, I want to share my symptoms and get opinions from those diagnosed if it’s worth looking into or if these are all just minor things I should dismiss. Like maybe I’m overthinking it? Surely I couldn’t have something so serious. If I do have ME/CFS, I’m mild. I’m concerned that if I do have it I’ll make it worse. Please let me know if the symptoms I list here align with what you experienced when you were mild.

Here’s what I’ve been experiencing:

- Crashes days or even weeks after activity. (for example, I went to the grocery store. I was unable to leave the house for two days and felt unwell for weeks.)

- Weakness, where I’ll suddenly collapse or feel like I can’t stand/walk well

- Severe fatigue, that isn’t helped by rest. I slept 11 hours the other day and was still exhausted.

- Confusion/issues with thinking that are new to me. This one scares me the most. Trouble spelling words I know how to spell, stumbling over words when I speak.

- Becoming extremely forgetful, in ways that are starting to affect my performance at work

- Widespread chronic pain (though I do have fibromyalgia)

- Swollen/sore lymph nodes in neck and armpits

- Tachycardia

- Temperature disregulation

- Dizziness/lightheadedness

- Pre-syncope, a few instances of syncope

- GI issues

- Night sweats

- Feeling flushed like I have a fever ( I don’t have a thermometer so idk if I have one or not)

- Random intolerances to light/sound/smells

- Fatigue from non-physical exertion like doing my hobbies or getting emotional

- I work in person 3 days a week and I feel like I spend the rest of my week recovering

- Sometimes all I have the energy to do is lay there even if I want to do things

- increasing difficulties doing daily tasks like dishes/laundry

Should I raise this concern to a doctor? Are these all just things I should power through? I really need advice because I feel like I’m going crazy, nobody in my life seems to think there’s anything serious going on other than possible POTs.

TLDR: Concerned I might have MECFS and am looking for others to see if my symptoms align with what they felt when their MECFS was just starting/was mild.

I waited months to see this cardiologist (3-4 months ish) all while my symptoms continued to expand and worsen. I finally get there and I’m hoping it would be a step in the right direction.

They give me an EKG which is normal aside from tachycardia. I previously had an echocardiogram which was normal. I also had a holter monitor.

I spent about 10 minutes telling her my symptoms and how my PCP had recommended I be tested for POTs. After everything I told her, her first question was “Do you exercise?”. I was so angry. I said no, not really. I’m faint and dizzy all the time, how would I be able to exercise????

She then proceeded to tell me my holter monitor was normal. I had also seen the results myself. I asked her if she was certain they were normal, because I reviewed it and from a simple walking pace my heart rate reached 169 bpm. Just walking leisurely on a cool day for a few minutes.

She just stared at me and was like, “Yes, that’s normal, for exercising :)”.

But we just covered that I am NOT exercising! I doubled down and was like, “Right, but I wasn’t. I was just walking regularly which I do every day.”

She just made this weird face (almost pity?) and just was like, “mhmmm :))) “

She said there was nothing she could do since all my results were normal. She didn’t even offer next steps or offer a TTT. I had to prompt her. She then told me I needed to find an autonomic specialist, she couldn’t test for POTs at all. She said she’d give me numbers to call for specialists. She didn’t.

I went to check the clinician notes afterwards, hoping the specialist info would be in there. It wasn’t, but you know what was?

A note that read: “Symptoms may be partially due to deconditioning or obesity.”

I have faced fatphobia from doctors all my life. But I’ve done my research. I know weight isn’t a prominent factor in dysautonomia, nor is it the usual cause. Basically, she just didn’t care because I wasn’t skinny.

If you read all this, thank you. Just needed to vent.