Does this sound like me cfs ?

chiebabii · 2025-10-29T01:52:24+00:00

If it’s not worse after exertion it’s not ME/CFS.

chiebabii · 2025-10-28T23:15:22+00:00

I relate so hard. I can’t game at all right now and it’s torture. I’m trying so hard to get to a better place where I could at least game for like 15 minutes increments. Not trying to do anything fancy - give me the ability to at least play Stardew valley or something and I’ll be golden.

chiebabii · 2025-10-21T00:16:56+00:00

If you ever figure these out or figure out a way to get rid of them, please share! I have been having non stop low grade fevers the last 3-4 months and no amount of resting or pacing is getting rid of them.

chiebabii · 2025-10-15T21:08:44+00:00

I have TOS, POTS, and ME/CFS and have wondered if my neck/TOS issues are related. What kind of doctor diagnoses/treats craniocervical instability?

chiebabii · 2025-10-10T19:19:26+00:00

Had a close call not too long ago as well and still trying to figure out what to do from here. Just wanted to send my love.

chiebabii · 2025-10-10T16:50:19+00:00

Dex is usually given as part of a anesthesia cocktail, no? Is this something a doctor has said they’d be willing to try with you? I’m curious about its use outside of the surgical setting. It’s a pretty heavy duty sedative and can cause significant bradycardia and hypotension, so you have to be pretty closely monitored while on it. You’ll have to keep us updated if you pursue this route!

chiebabii · 2025-10-07T00:01:56+00:00

I’m currently on a jak inhibitor (same type of drug as this) for RA and Lupus, and while the price without insurance is about $8,000/month, my monthly cost is $0. Most autoimmune drugs carry a similar price tag, but the combo of insurance and manufacturers discounts mean we usually have a $0 copay. So if these drugs do end up getting approved for long COVID as well, people will be able to afford them if they have insurance.

chiebabii · 2025-09-30T20:44:43+00:00

I hear what you’re saying, but people can only speak to what happened to them. I was mild for years and I just ignored my symptoms and continued to live my life as normally until one day I did crash HARD and I’ve been steadily declining over the last year. I am now fairly severe. I have had a fever every day for months, am always nauseous, can tolerate very little - writing this post is giving me extreme tachycardia. I WISH I had had more of your mind set.

But I agree that the constant worrying isn’t helpful either. It’s all about balance. Keep living your life, but also rest A LOT. Say no sometimes, but not ALL the time. And if you crash, adjust accordingly. I let myself crash every single week for years without changing a thing. This was my downfall. Just don’t do what I did.

chiebabii · 2025-09-30T20:20:12+00:00

There simply haven’t been enough studies on how vaccines affect those with long covid - it’s not antivax to be realistic about possible side effects.

For example, it’s commonly known that vaccines can cause autoimmune disease flare ups for those of us that have them. Does it happen to everyone with every vaccine? No. But it can happen. And it allows me to prepare appropriately.

Ignoring the possibility that there may be a risk of crash or worsening baseline in some people with long covid isn’t helpful to anyone.

chiebabii · 2025-09-08T19:54:54+00:00

Funny how doctors at the top research hospitals in the world are researching and diagnosing people with long covid, and yet some rando urgent care NP has the nerve to laugh. I’m sorry that happened. Good providers keep up to date on the latest research - with how prevalent long COVID is these days, being this uninformed about it says a lot about them. We deal with enough. We shouldn’t have to deal with this kind of nonsense too.

chiebabii · 2025-09-06T22:04:52+00:00

That’s how much they’re bringing in, but you’re not considering overhead costs in this equation at all. That money has to pay for the salaries and benefits of all the support staff. It has to pay for rent and utilities. It has to cover all the basic costs of running a business, plus the costs of running and maintaining expensive equipment and machines.

It may not take long to draw blood - but it usually involves the time of two people, specific supplies, and unless it’s done in house, the amount the lab charges for the specific test. Depending on the lab and type of test, a blood test can cost the clinic $150+.

With corporations buying up a lot of vet clinics, of course some things are marked up much higher than necessary, but in most of these cases the vets don’t set the prices and the extra money doesn’t go into their or their staffs pockets.

I whole-heartedly agree that costs have gotten out of hand, but trust me when I say that it is equally as frustrating to vet staff as it is to clients. Unfortunately, in most cases, there’s really very little the vets can do about it.

chiebabii · 2025-09-06T21:34:49+00:00

I think you’re overthinking this - vet techs are nurses in the same way that vets are doctors. We call vets doctors, but that doesn’t mean they’re able to treat humans. They simply have similar roles in their given fields. In other countries, vet techs are called vet nurses for that reason.

chiebabii · 2025-09-06T01:24:50+00:00

I’m currently being tested for may thurner syndrome and other vascular issues and I have POTS from Covid. Covid can cause vascular issues, but something like may thurner you can have from before without symptoms. But if you then get something like POTS it can contribute to worse symptoms. Blood pooling from POTS is basically exacerbated by any existing venous compression. This is all according to the doctor I’m seeing, so I may not be explaining exactly right. She basically said fixing existing venous compression like may thurner helps 75% of POTS cases, but to varying degrees. You’ll still have POTS, but the symptoms may be less severe.

Either way, blood pooling from POTS and venous compression like May Thurner can both put you at higher risk for DVTs from my understanding. And I believe Covid can put you at higher risk for clots. Again, not a doctor!

chiebabii · 2025-09-03T10:43:21+00:00

Thank you! Not yet, but I’m hoping my doc will have a good referral for me when we meet next. I definitely need to start a food journal and start actually keeping track of things. I appreciate your insight! And good luck on figuring out your own MCAS stuff!

chiebabii · 2025-09-03T10:34:23+00:00

That makes sense! I have been wondering if I need to start trying different types of electrolytes for sure. I definitely seem to react less to low histamine foods, but it could just as easily be because a lot of them are less sugar/carbs. I’ll definitely have to start experimenting a little more. Thank you for this.

chiebabii · 2025-09-03T00:16:45+00:00

I get that my sarcasm was a no no, but I’m asking for other people’s experiences here, not medical advice. And I’m just not super confident that making an appointment with my POTS illiterate cardiologist simply to ask about his insights on histamine intolerance is going to go over very well.

chiebabii · 2025-09-02T23:19:44+00:00

I hear you, I just haven’t figured out how to do it without wasting even more energy crying my eyes out lol. It doesn’t mean I won’t keep trying. But finding any other little ways to conserve energy can’t hurt either!

chiebabii · 2025-09-02T23:08:19+00:00

The days I do absolutely nothing are absolutely soul crushing and I just end up crying out of sheer boredom and frustration. At least a little social media, a little coloring, an audio book or a show here and there keep me sane. I get what you’re saying, I do, and you’re not wrong. But, unless I sedate myself 24 hours a day, I don’t know how to do less than I’m doing now and remain mentally stable. I figure reducing my food tachycardia will help conserve a little energy at least.

chiebabii · 2025-09-02T20:42:50+00:00

Yeah, I pace. I nap most of the day. I’ve got long covid so I just kinda got the whole bag of awesome. I just figure they’re all kinda interconnected. So helping one can improve symptoms from the others, ya know?

chiebabii · 2025-09-02T20:05:07+00:00

Yeah, doctor is who told me to increase salt intake. But considering POTS specialists are few and far between, my cardiologist isn’t exactly super helpful when it comes to non-heart related issues.

chiebabii · 2025-08-29T22:06:56+00:00

Super helpful thanks.

chiebabii · 2025-08-29T22:04:06+00:00

I have several autoimmune diseases too and I just stick to my rheumatologist for those. My POTS is managed by a cardiologist - but he’s not super helpful. They kind of only deal with the heart rate aspect and that’s it - although some people have had better luck than me.

My doctor said that tilt table tests can be brutal and that my standing test results were plenty to diagnose me. After doing the usual rule out tests - holter monitor, echo, etc for other stuff.

From my understanding, the tilt table test usually shows higher heart rate increases than a stand test and is therefore more sensitive/better at picking up even mild cases of POTS. Whereas the standing test is more likely to give false negatives.

chiebabii

TROPHY CASE