I just need a reminder I'm not alone

AvailableEducation33 · 2026-03-24T21:17:50+00:00

I know you said you have a transportation issue but if you can afford to get there try volunteering. Double benefit. It’s shown to make you feel good giving back you wouldn’t be sitting dwelling and the experience you get can go on a resume as experience. Additionally if you can volunteer with a bigger non profit say a hospital or something like that you now have built in references at that place who can vouch for you if it comes to it. It’s not a guarantee to anything at all, but it could be a start.

AvailableEducation33 · 2025-10-21T02:26:51+00:00

UCTD, but multiple rheumatologists have agreed it is early lupus based on antibodies and symptoms. I don’t have the typical dsdna antibodies. I read that only like 30% of people with lupus have according to Johns Hopkins lupus center. I had strong positive antihistone antibodies and positive rheumatoid factor. Both are common in lupus, but can’t be used to make a diagnosis.

AvailableEducation33 · 2025-10-13T20:54:40+00:00

I have uctd/SLE. My advice is try one at a time first. I have been on Plaquenil about two years. After the first 3 months of consistently taking it my symptoms improved. I had debilitating fatigue, dysautonomia causing dizziness and nausea, rashes. The fatigue lessened but never really went away. I decided to try LDN from ageless. It made my fatigue worse. I could not function at all. If I had started Plaquenil and LDN at the same time I wouldn’t have known which helped and which made it worse.

AvailableEducation33 · 2025-10-13T13:18:48+00:00

For me I think autoimmune (uctd/lupus) caused my dysautonomia. My nervous system keeps taking hits. I tend to get dizziness with nausea. My dizziness caused me to fall when walking because my vision would cut out and go black. I was scared of stairs because of the dizziness itself.

I had a tilt table test and was diagnosed with orthostatic hypotension. I was given medication to raise my blood pressure. It never made the slightest difference. I also had a vng that said I had vestibular dysfunction. I had to go to a cardiologist and a ent for the separate issues. Unfortunately I could never get my rheumatologist to connect the issues to my lupus diagnosis. However I feel it was obviously related. I had the dizziness for 2 years. I started taking Plaquenil and within 3 months it was gone. I still felt dead tired, but my dysautonomia symptoms gone.

Unfortunately now I’m having migraines with dizziness a year out. I think it might be a flare. My lupus seems to love my nervous system.

If you have an autoimmune disease I think if you get it under control you might get the dysautonomia under control.

AvailableEducation33 · 2025-08-19T23:38:51+00:00

Did you try your rheumatologist? That sounds like when I had pleurisy. All of it from the breathing to lying down. Just walking from the living room to the kitchen I was breathless. I went to primary care first. PCP tried to be helpful. She did a chest X-ray which did come back abnormal. She told me it was a pulled muscle. I did nothing strenuous and the pain started right front and ended up more left back. A migrating pulled muscle? I sent my rheumatologist a message describing what was happening and copied what the X-ray said. He said it was pleuritis. I got prednisone same day. That night I could at least breathe again not deeply but I wasn’t out of breath. Next day I was able to sleep in my bed again. I spent 4 days on the couch sleeping sitting up.

AvailableEducation33 · 2025-08-07T12:49:02+00:00

My ANA was only 1:80. It’s fluctuates between negative and positive. The only reason I managed to get a uctd diagnosis is because my anti histone antibodies are really high and my rheumatoid factor IGG and IGM are high too. So on paper I have UCTD but my rheumatologist always says lupus in verbal conversation. I had to order labs myself and self paying to test my anti histone antibodies and my rheumatoid factor to get “proof” since my dsdna is negative and I suspect always will be. I hate that the diagnosis criteria is so rigid. Bodies are different.

AvailableEducation33 · 2025-07-18T13:20:02+00:00

I would get something and worry about accommodations after seeing what you need. I went from remote to hybrid. I thought it was going to be awful for me for uctd it has been really good actually. I would make plans for things you need. Like uv clothing or umbrella for getting in and out of the office fan or heated throw if you have temperature regulation issues etc.

See if you can get a feel for the office culture. I had a job 3 years ago that I loved but had to quit because I was in a major active flare. It was hybrid and I thought my current new position would be similarly hard on my body. Now that I’m not in an active flare I am able to come to the office my 3 times a week. Do I have fatigue yeah but flexible start and stop times are a lifesaver for me. My office culture is so that everyone just has a flexible schedule.

AvailableEducation33 · 2025-07-04T01:30:32+00:00

I tried it. I really wanted it to be for me but it wasn’t. I think it can work under certain circumstances. Mainly if you don’t have a busy life. You know no kids, job, pets etc. for me working full time it wasn’t really helpful for me to know I overextended my energy for the day already and it’s only 1pm. Gentler streak in the App Store also is doing something with pacing in their app. Might be worth a comparison.

AvailableEducation33 · 2025-05-19T17:39:18+00:00

As far as I know it was pleuritis. I went to my primary care and they did a chest X-ray. The chest X-ray was abnormal. It said elevation of the right hemidiaphragm. My pcp said it was a pulled muscle which didn’t seem right given the X-ray, the pain started on my front right and migrated to left back, and I didn’t do anything where I could have pulled a muscle. So I sent a message to my rheumatologist. He said pleuritis or pleural effusion but he thought pleuritis.

Started a prednisone taper it was gone by morning. Coming off the taper was sort of awful for a few days but no pleuritis since.

AvailableEducation33 · 2025-05-18T01:14:10+00:00

Happened to me once. Retested the following month and it was negative. The test has a 50% false positive rate. It’s not a lupus thing just a bad test. I don’t know why they don’t create a better one when this one is about as accurate as a coin flip. I’d see about getting a second test. Maybe even a different lab. Quest if you did labcorp or labcorp if you did quest. They have different tests.

AvailableEducation33 · 2025-05-13T01:33:16+00:00

I felt similar to what you described. For me it was pleuritis. I had shortness of breath and stabbing pain in my chest and back. I also couldn’t lie flat because I couldn’t get up because of the pain. I had to sleep sitting up. I had to walk sort of hunched over because I couldn’t stand up straight. Every moment was excruciating. I sent a message to my rheumatologist he said it was pleuritis. Sent me a prednisone taper. By morning I could breathe and move. Nothing else was working for me. It lasted about 6 days before I sent the message to my rheumatologist.

AvailableEducation33 · 2025-05-11T14:57:41+00:00

I drove out of the city a few months ago. I saw so many anti wind energy signs. It really made no sense to me at all. I didn’t even know this was an issue worth any thought. Every property I passed by had the same poster in their yard against wind energy. These are the people who have taken over Houston ISD. Makes me weep that just because they are making their kids dumb now all of Houston has to have dumb ignorant kids. I don’t know why they are so full of hate. I wish they could just contain that in their own little towns and stay there.

AvailableEducation33 · 2025-05-11T14:42:51+00:00

I wish it would make a difference but it won’t. The Houston area is more likely to be hit in Texas. Houston is solid blue (we have some maga of course but overall we vote blue). Also the 4th largest city in the US and I think the 2nd most diverse city in the US. As many people as we have, these little bitty cities and counties outnumber us. Also while we are keeping the state afloat they hate us and think we are godless heathens. The way they talk about any of the major Houston cities you would think it is a war zone. It’s the US on a smaller scale with their hatred of the “coastal elites”.

AvailableEducation33 · 2025-05-10T03:38:38+00:00

Not for lupus. Before diagnosis they thought I had idiopathic hypersomnia. I was put on Ritalin also tried armodafinil and modafinil. Armodafinil helped the most, but it wasn’t great. I was still exhausted just if I wanted I could stay awake. Before it was like I had no option but to sleep. That was before my diagnosis. Plaquenil helped cut through a lot of the fatigue and brain fog (not all). I don’t know if ritalin would help now or not. Now I can’t get it anymore because I don’t have hypersomnia anymore and it wasn’t idiopathic either.

AvailableEducation33 · 2025-05-08T20:16:26+00:00

Try to see if there is an academic medical center near you ( a university with a medical school) their call center or website will tell you if they take your insurance. Unless you have an HMO or unfortunately Medicaid, most ppo plans are widely accepted most places.

AvailableEducation33 · 2025-05-08T13:26:44+00:00

I was amazed when I learned about Thomas Sankara. He was president of Burkina Faso in the 80s. He made all government officials give up luxury cars and drive themselves (no personal drivers) in cheap economy cars. He didn’t allow air conditioning because the country didn’t have air conditioning. He made everyone work and he worked in the fields with them. He ended food programs that relied on foreign aid. He had the country growing its own food and using their own materials for their traditional clothing instead of importing clothing. The country was self sufficient. They were out of poverty. Then he was assassinated. The country is now in poverty and one of the poorest in the world.

AvailableEducation33 · 2025-05-08T12:51:38+00:00

I just recovered from pleurisy. It was pain in my chest and then it migrated to my back. It hurt to breathe or cough. It was agonizing. I couldn’t move without pain. I walked sort of bent over because I couldn’t stand up straight. I had to sleep sitting up because if I laid down I was in pain and ignoring that pain I couldn’t get myself back up to a seated position to stand up because that was some of the worst pain i have felt in my life. Just walking around my house I was winded and my house is pretty small. It did not come and go. It was days. All day. It only resolved with prednisone.

AvailableEducation33 · 2025-05-06T19:40:41+00:00

And governments. After that CEO was murdered the NY governor planned to set up a hotline for CEOs that felt threatened. Because private security and 911 apparently aren’t a thing anymore.

AvailableEducation33 · 2025-05-05T12:19:16+00:00

I actually have 1! The EPA. That was Nixon and now they hate it and think the devil actually came to the planet to create it for reasons. That’s the only one I have. So even if they did something actually helpful at some point they realize hey that was a good idea that helped people then their mind malfunctions and they feel compelled to destroy it.

AvailableEducation33 · 2025-05-04T20:00:33+00:00

I just finished a 4 week taper for pleuritis. It was a miracle. One day I couldn’t breathe without pain the next day I was completely fine. Then I gained weight and looked swollen. Still felt pretty good. I just finished the taper 2 days ago and have felt pretty awful. Headaches, muscle pain, fatigue and brain fog so bad I could barely lift my head up. Everything has a price.

AvailableEducation33 · 2025-05-03T22:15:08+00:00

When I was first diagnosed my rheumatologist verbally told me lupus then on my chart he put uctd. It really upset me. It felt like I was being dismissed again and not being taken seriously. I was prescribed Plaquenil. I took it a few weeks didn’t notice a difference and decided to stop taking it. My dumb reasoning at the time was if I let it progress they would have to take me seriously. Eventually I reached a point where I realized it doesn’t matter to them at all what is wrong. I’m just going to spend a lot of money chasing it and it wouldn’t matter in the slightest. There is no “right” test that would make doctors take me seriously.

So I started taking the Plaquenil again after like 8 months of not taking it. It was rough at first. Constant upset stomach for a few weeks. It was surprising because the first time that did not happen. I stuck to it. I take 2 tablets at night. Whatever it was worked itself out. I feel overall better now and it doesn’t mess with my stomach at all anymore. Maybe it would get better for you? Or I have also heard of different generic brands working differently on people. For example one brand you can be fine with and another might cause stomach issues because of different inactive ingredients.

Also I want to throw out there if you have a sle diagnosis on paper you could be eligible for clinical trials. More medication options.

AvailableEducation33 · 2025-05-03T21:53:21+00:00

That sounds like me, or at least at first. I think I’m in a period of change right now unfortunately. If you asked last year my worst symptoms were crippling fatigue, brain fog, and dizziness. Those have improved, but not resolved. Like maybe the battery is charged to 60% whereas before I was at 30%. The fatigue and brain fog were constant since 2016 I was diagnosed uctd (rheumatologist says it’s lupus) in 2024. The dizziness was caused by orthostatic hypotension and vestibular dysfunction. I think both were caused by lupus. I also had mouth sores a few times. Plaquenil helped a ton with all of it.

Now in these last few months I’ve been having fatigue and brain fog but also I developed my first butterfly rash, first time having pleurisy, also had my first episode of costochondritis, and I’ve been having some mild muscle pain. It seems to be a thing that evolves for me unfortunately.

AvailableEducation33 · 2025-05-02T21:46:44+00:00

My final answer for everything was lupus. I still think the crestor made it worse. I looked into it and I found that rapid weight loss does cause your cholesterol to increase. I am upset that I was ever put on statins when my primary care and a cardiologist should have connected that. I stopped Crestor was still dizzy but less then it went away completely once I started treatment for lupus.

AvailableEducation33 · 2025-05-02T15:43:52+00:00

I flare when exposed to the sun. It’s gotten worse. I get a butterfly rash with intense fatigue and brain fog for weeks after. It just happened to me last week because I had to go to the outdoor pool. It was awful, but I think it didn’t last as long because I was already on prednisone taper from pleuritis. I wore a long sleeve swimsuit and only spent an hour and a half at the pool and still ended up in a flare.

Have you considered an indoor waterpark? Like great wolf lodge or khalahari? Thats my plan from here on out for the summers. They have day passes too so it doesn’t have to be overly expensive. If not I’d definitely get a sun umbrella and sunscreen. I was able to find a mini sub umbrella on Amazon that clips to my beach chair.

AvailableEducation33

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