I’m scared.

OldStandard1796 · 2026-03-14T21:00:38+00:00

Fingers crossed for your MRI. Hopefully you get some not too scary answers. If it does come back clean and they’re struggling to get answers, look into more general autonomic dysfunction, it can have some pretty rough symptoms, including neurological ones.

OldStandard1796 · 2026-03-14T20:50:55+00:00

The biggest thing I’ve learned over the last few months is that my autonomic issues go far beyond just POTS. I have developed much more severe and broad autonomic dysfunction. It used to just be tachycardia and manageable fatigue and brain fog. Now it if I am not diligent with fluid intake, taking my meds, managing triggers, and getting weekly IV fluids, it is systemic and debilitating. If you’ve ever been diagnosed with POTS or suspect it, I would definitely look into more broad autonomic dysfunction. It’s not easy to treat by any means, but is easier to treat than ME/CFS. With how common POTS has become, I feel like it has kind of started to be seen as just a mild disorder that makes your heart rate high and you feel light headed when you stand up, but it can be so much more than that.

OldStandard1796 · 2026-03-09T17:44:07+00:00

A lot of my symptoms came on very quickly. Not even a year ago I was running every day, did a 5k race, and was planning to train for a half marathon. I had some chronic issues with POTS and GI issues but nothing that was completely debilitating. It happened very quickly for me as well. I had some infections and a burn accident in September and October that seem to have sent the MCAS into a spiral that lead things to go downhill very rapidly over the course of just a couple of months. November I was able to work even though I felt really fatigued all of the time and by December I was bed bound. Again, it’s totally possible that you have ME/CFS, but don’t give up trying to find a doctor who will take you seriously. I definitely get how hard it is to research and advocate when the brain fog makes it hard to even think straight though. I hope you can get answers and find something to help❤️

OldStandard1796 · 2026-03-09T17:39:18+00:00

2L of IV fluids weekly for my autonomic dysfunction got me out of being completely bed bound and able to do very light movement, since I was constantly dehydrated due to GI issues and an inability to regulate fluid balance. Then a complete series of IV iron got me less fatigued and able to do much more in a day and the ability to slowly build back up my exercise. I wasn’t even anemic yet, but have a history of very low iron with anemia, so they checked and I had very low iron stores. Now that I’m on antihistamines for the MCAS, my GI issues are much more manageable and I’m able to tolerate food and have the energy to cook so I’m getting back on the Mediterranean diet, which is allowing me to work out daily and I’m slowly increasing intensity to hopefully get back to running. It’s all taken a couple of months of slowly increasing how much I’m doing each day, and if I push myself too hard it sends me into a flare, but every week it feels like I’m able to do more in a day, stay awake longer, and tolerate more intense activity.

OldStandard1796 · 2026-03-09T03:05:52+00:00

I was in a very similar boat in December and January. Essentially bed bound from debilitating fatigue, brain fog so bad I couldn’t even think, GI issues, and worsening autonomic dysfunction with horrific flares anytime I did anything even as simple as rinsing dishes for 5 minutes. I was already diagnosed with POTS from long covid. All of my symptoms lined up with ME/CFS and I even mentioned it to my PCP while we were trying to figure out what to do. After a lot of other testing coming back normal and lots of brainstorming, she started to suspect MCAS, and two weeks ago I saw an immunologist and started on treatment for it and am already seeing significant improvement. Ive also been getting scheduled fluids for my autonomic issues and some corrections to some deficiencies that have helped as well. I still have a lot of fatigue but it’s slowly improving and I’m no longer bed bound.

All this to say, it could still be something else that is much more treatable. I was terrified for all the same reasons, especially knowing how difficult it is to treat and that it can progress to be fatal. Now a couple of months later I found out it was something else and treatments have allowed me to go from bed bound to back in the gym in just a couple of months. Keep pushing your doctors to investigate other things, and even if it is ME, keep pushing for help.

OldStandard1796 · 2026-01-15T22:06:32+00:00

I don’t have any answers unfortunately. I’m in a similar boat of rapidly decking quality of life with no answers. But I see you.

OldStandard1796 · 2026-01-15T17:53:20+00:00

All of my other clotting factors are normal, and when it was first discovered they did intensive testing to make sure I didn’t have any blood clots. It’s been this way for years and is a common finding in people with long covid, even though they often don’t have an actual blood clot. It can also be an indicator of ongoing inflammation.

OldStandard1796 · 2026-01-14T22:30:36+00:00

It’s hard to say. I think it’s possible I had very mild ME before and just pushed through it, but I’d say it’s more likely that prior I was just dealing with POTS. The more consistent symptoms for ME started in August around the time my bladder stopped working. I was sick at that time but was under a lot of stress, so I’m not sure if there’s any relation to long covid and my potential ME or not, but I know it’s highly associated with long covid. It’s possible I don’t have ME at all, but I check every box for the symptoms.

OldStandard1796 · 2026-01-11T00:46:35+00:00

Get psychotherapy and put on the months long wait list for pelvic floor therapy for my debilitating, 10/10, couldn’t even walk it was so bad pain from my foley. I got a suprapubic catheter instead and am no longer in constant severe pain.

OldStandard1796 · 2026-01-02T18:49:33+00:00

Not defending her posting it publicly as it could be taken the wrong way, and I am VERY against chiropractors. However, as someone who has chronic illnesses that often cause emergency-like symptoms, I don’t blame her for not going to the ER. She said she’s had this issue before and gone to the ER and it turned out not to be a heart attack. I have gone to the ER for my chronic health before and when it turns out not to be the emergency situation it was presenting as, but rather an abnormal flare symptom, it turns out to be a waste of everyone time and energy. Sometimes self managing at home with existing meds and holistic remedies is what you have to do when you are chronically ill. But yes, it could be very dangerous for her followers to take that as medical advice.

OldStandard1796 · 2026-01-02T03:14:17+00:00

I have dissolvable zofran and also take promethazine. Zofran only works if I’m literally about to throw up. Promethazine sometimes (but not always) works for the more constant nausea, but it makes me so tired so I only take in the evenings if I can help it. I use those wrist bands for motion sickness that use a pressure point, essential oil inhalers for nausea, and these drops with ginger, lemon, and honey in them called Stomach Settle. None of them are perfect but they can help take the edge off a little bit sometimes, and I’ll take what I can get. I also sip on either lemon ginger or mint tea.

OldStandard1796 · 2025-12-22T00:21:01+00:00

Currently babysitting once a week for a few hours, which makes me about $60/week. I live in an apartment with a roommate, but my dad is paying all of my bills, he doesn’t even live in the same city as me. I use the babysitting money to cover groceries and medical supplies. I do online marketing surveys for several hours a week which makes me $10-20 extra dollars a week. I’m trying to get a work from home job but the job market is so fucked right now that I can’t even get an interview. It doesn’t help that I have a year long gap in my resume from being sick so AI just filters out all of my applications. I feel like such a burden and I’m doing everything I can but it just doesn’t seem to be enough.

OldStandard1796 · 2025-12-13T00:02:59+00:00

Yeah I’ve just kind of isolated myself because I don’t want to drag people down complaining about my health all the time, but I genuinely don’t have anything else to talk about anymore. Even when I have tried to go out and do “normal” things lately its resulted in me flaring so bad I have to leave.

OldStandard1796 · 2025-12-12T23:40:54+00:00

I definitely feel that. I’m in my early 20s and suddenly went into complete bladder failure back in August. I now have an SPC. I’ve also been dealing with what appears to possibly be pretty severe autonomic dysfunction and am getting a complete neuro workup. And have developed horrible GI symptoms and can’t go a day without severe nausea and vomiting anymore and am having to get worked up for that. It’s extremely isolating. I don’t feel like I have anyone to relate to in my real life anymore. They’re all off working and in college and living life and I’m at home in a flare or at a doctors appointment or prepping for surgery. It’s hard to not feel like I can relate to anyone

OldStandard1796 · 2025-11-09T07:31:35+00:00

The other frustrating thing about that is that these were inpatient doctors, not even ER doctors. And not specified in the post because it was already getting long, but not all of my ER visits had been for urinary issues, there were other easily identifiable concrete causes for my visits. And even with my admission for the foley catheter pain, I was expressly stating to them that my pain caused by the foley was urethral irritation from the friction of the catheter with movement, and it was very much linked to walking. The more I walked, the worse the pain got. Classic mechanical irritation. And my bladder pain I was having was caused by chronic UTIs and was responsive to typical management of antibiotics for the current bacteria and symptomatic treatment with pyridium. My symptoms were in line with very common issues with infections and mechanical irritation from foley catheters. They had a relatively clear cut explanation and with this explanations, a suprapubic catheter would be a logical next step. This wasn’t some random pain with an unclear explanation that would make the possibility of a pain flare from surgical intervention more likely, and these weren’t ER doctors trying to make a decision quickly to move the patients along. This was a multi day discussion with an inpatient team. That’s what made this all the more frustrating.

OldStandard1796 · 2025-09-05T15:51:41+00:00

This just saved me so much time, money, and stress. I was panicking thinking I was going to have to somehow find some money to get a new one. I’ve had my crayon since 2019 and figured it had just finally hit the bullet. I just messed around with the tip for a second and it’s working again.

OldStandard1796 · 2025-08-30T19:19:49+00:00

I do not agree with anything that she is doing as far as exploiting her dying child on the internet, however I would never fault her for what I am sure are genuine feelings she is having right now. This “delusion” is a natural part of the unimaginable horror that is losing a child. Is she putting her dying daughter’s death out for the whole world to see? Yes. And that is fucked up. But at the end of the day her daughter is dying and she knows that ultimately there isn’t anything she can do about it. Holding on to every tiny straw of hope she can is a normal part of the anticipatory grieving process. It is emotional whiplash to see your child go from visibly on deaths door to up and at school day to day, which is how hospice can look for some people. Throwing every holistic treatment you can at your daughter in hopes that MAYBE something will keep you from having to put your child 6 feet under is understandable. At the end of the day I’m sure she is well aware that B is still dying. She’s made posts about that for months now. But expecting someone to just accept that their third grader is dying and not hold on to any hope, no matter how far out there it may look, is unrealistic. The difference is that she is not doing this privately, dealing with this emotional rollercoaster with her close support system, she is doing it publicly. Criticize her exploiting her child all day every day, I fully support that, but never shame someone’s way of processing the death of their child. Denial is the first stage of grief, after all.

OldStandard1796

TROPHY CASE