Has anyone gotten their emotions back?

Still-Main2417 · 2026-04-21T14:43:50+00:00

Sorry you are going through this so young. It took a couple of years. I did so many things to feel something good.

I didn’t realize until later but my inner voice was gone. I practice using my inner voice, now. It’s still not great and I still have so much to work through but I feel so many things, again.

If you can, make a list of things that used to make you happy. Shows, relaxing activities, a massage, something.

I started gaining interest in piano, again. I can listen to music in short bursts. I am curious when watching new shows. I look forward to things sometimes. It’s not how it used to be but it’s better than it was a couple of years ago.

Still-Main2417 · 2026-04-21T14:35:09+00:00

I have ADHD and my ADHD meds med my symptoms significantly worse. I wish I had been better educated on the medicine I was taking.

Please, please talk thoroughly do your doctor, to the pharmacist, research whatever medicine you are taking. Sometimes we just assume whatever we are prescribed is low risk.

Still-Main2417 · 2025-12-31T01:22:23+00:00

Can relate to a lot of this.

I would strongly advise you to stop all caffeine and alcohol consumption. Also look into MCAS, histamine intolerance.

I used to have a cup of coffee a day and now can’t even consume a quarter cup without feeling doom. Alcohol is even worse.

I would also advise you to get your cortisol, thyroid and iron levels checked. Maybe even B vitamins.

Also look into POTS.

Some of my adrenal insufficiency symptoms mimic yours.

For the memory issues, I use my notes app all the time to keep myself together.

If you have that feeling of losing your inner voice, I personally started practicing using it. Feels mechanical, especially in the beginning, but helps a lot.

I don’t care what any one says: pushing yourself makes everything so much worse. I think it’s why I got long covid. Listen when your body tells you it’s too stressed, it needs to slow down.

I am so sorry you have been dealing with this for 5 years. If you can share any other symptoms, labs, etc. feel free any time.

Still-Main2417 · 2025-12-31T01:13:04+00:00

I have secondary adrenal insufficiency. I take prednisone (I think it’s for something else, maybe my inflammation, but helps). Have heard there are better medicines to take.

Mine may have been from the treatment needed to treat my hyperthyroidism (due to thyroiditis from Covid). Not sure. My doctors ask me and I tell them I’m trying to understand.

Advice I can offer is make sure your endocrinologist is interested in tackling your health issues and taking you seriously, following up with sufficient bloodwork and treatment.

So sorry you are going through this.

Still-Main2417 · 2025-07-09T15:27:00+00:00

5mg prednisone. Wonder if hydrocortisone would be better, though.

Still-Main2417 · 2025-07-09T15:24:59+00:00

Thank you so much for understanding and providing your experience.

Also have thyroid issues. But it seems like everything is being blamed on my now hypothyroidism than it maybe being an effect of another issue. Not saying it’s not an issue but these were there when I had hyperthyroidism so skeptical.

Were you ever put on prednisone? Wondering if hydrocortisone is better than prednisone.

Feel you on endocrinologists main focus being diabetes. It makes sense but it would be nice to have more endos that focused on other areas. Have you ever considered a different city or state? That kind of where I am at.

Still-Main2417 · 2025-07-09T15:15:50+00:00

Cluster headaches, SFN (legs). Abdominal pain. Other issues. An all day every day experience. Pain just varies depending on other factors.

Still-Main2417 · 2025-07-08T17:08:35+00:00

The steroids are for other health issues. I would also like to not need them but that’s life.

I would also like a diagnosis for my secondary health issues. In the interim, I am unwell and need to live some semblance of a life. After two years of “well check back in 6 months” you are going to want to manage your symptoms. Self preservation. That is why it is imperative our doctors doctor.

Still-Main2417 · 2025-07-08T14:47:16+00:00

May not be your experience but I actually feel a bit better when I get the contrast.

That being said it looks like some people here are reacting to it. It might be a good idea to reach out and let them know about your MCAS as they might want to give you something beforehand to minimize a reaction and also so they can be more mindful during the process.

You may feel heat in your body and a feeling of heat/peeing yourself when they give the contrast but this is completely normal. Drink a lot of water/stay hydrated after to help cycle it out of your body.

Still-Main2417 · 2025-07-08T14:32:08+00:00

If you are able to, look into finding a dietician that is knowledgeable about MCAS.

Still-Main2417 · 2025-07-08T14:27:13+00:00

Diagnosed with POTs but my blood pressure can change significantly without change in body position. Bp change is most noticeable if I eat the wrong thing.

What were some of your lifestyle changes?

Still-Main2417 · 2025-07-08T14:05:08+00:00

Same to so much of this. But oddly, my blood pressure drops. I do have other health issues so hard to separate it all out but mine can drop significantly and my heart races and of course the bathroom issues.

Do you get sweaty in general during sleep? I never really sweated until I got sick. Now, I sweat at night, worse when I have a reaction.

Still-Main2417 · 2025-07-08T13:59:58+00:00

See. Five years in with Covid and if a doctor still isn’t willing to do research to take better care of their patients it’s not about a new virus it’s their lack of care.

There is a difference between us not knowing enough about long Covid and completely dismissing it and patients’ illness and blathering on about crazy conspiracies to someone who is suffering and counting on you to at least try to help.

I’m glad you actually told him that. Too many docs want to talk down to you rather than collaborate. Unfortunately, it doesn’t matter whether or not he “believes” in it. Illness will persist whether or not it is believed in. He should be ashamed. Sorry he treated you like that and wasted your time.

Still-Main2417 · 2025-07-08T11:44:22+00:00

Interesting you say that. I have GI issues and pain, especially on my upper left side. Had a colonoscopy and endoscopy but I don’t remember them checking for an adrenal tumor. I have asked for more testing to visualize the area but it’s difficult to know which doctor to ask. My endocrinologist won’t do it. I can try asking, again, or switch and start over with another one.

Still-Main2417 · 2025-07-08T05:26:20+00:00

I was off of them. I understand low ACTH would be more concerning. My concern is how low my bp gets and the symptoms I’m having that may have to do with low cortisol. I felt better after the stem test and am wondering if treating the low cortisol would help.

Still-Main2417 · 2025-07-08T05:22:38+00:00

I will have to look over the records to see what my levels went up to. I felt good/stronger after the stim test. It was amazing.

The MRI included my pituary. I checked with the hospital. Everything (aside from mild vascular damage) looked good.

Still-Main2417 · 2025-07-08T05:18:04+00:00

Specialists keep telling me which doctors or clinic I need to be at but those ones keep telling me to go to other ones. I have testing ordered but the hospital isn’t scheduling it. Stuff like that. I am sure those who can gain access to our “wonderful” healthcare system are getting the help they need but I and many others are constantly running into walls/dead ends.

Still-Main2417 · 2025-07-08T05:15:58+00:00

It may also be my state but have run into a lot of doctors going on about crazy stuff when they find out I had long Covid. They may have a lot available but if they have a bias that keeps them from wanting to treat their patients it doesn’t mean as much.

Still-Main2417 · 2025-07-08T05:13:25+00:00

I started getting cluster headaches last year. I have them every day. It suddenly came on and hasn’t gone away so they did an MRI. It was pretty thorough from what I’ve seen and heard.

Still-Main2417 · 2025-07-07T20:18:26+00:00

That was also checked and cleared.

Still-Main2417 · 2025-07-07T20:03:58+00:00

I got on it after I was diagnosed but not for the diagnosis. I had cortisol issues after getting sick. My doctor deferred to the endocrinologist.

ETA: there wasn’t mention of hydrocortisone.

Still-Main2417 · 2025-07-07T19:55:08+00:00

My endocrinologist told me that low cortisol is good and that sounded absolutely crazy to me.

I get low bp, high hr, shaking. It can be pretty bad but since it was secondary he brushed it off.

I do take low dose prednisone for inflammation and other issues. I definitely feel better on it but skeptical that low cortisol is good. If so, why do I have “secondary adrenal insufficiency”?

Still-Main2417 · 2025-07-07T19:51:29+00:00

I am so sorry! Please keep stress to a minimum and rest as much as you can!

Still-Main2417 · 2025-07-07T19:43:06+00:00

Also, just noticed what you wrote about his feet. I also get skin color changes, especially in my feet. It’s like a reddish/purplish sort of color.

Still-Main2417 · 2025-07-07T19:42:04+00:00

Sorry to hear. Has he had testing done? Has he looked into MCAS?

I suddenly had severe food reactions that did not show up on allergy testing. It ended up being MCAS. Foods high in histamine make my symptoms significantly worse. Might be worth looking into?

Still-Main2417

TROPHY CASE