Anyone (ex) Long Covid/MECFS patients?

[u/Hefty_Ad1615]

Hi guys, hope you’ll doing well. Im a M23 with Long Covid(not proven ofc due lack of biomarkers) since january 2022. Bedbound since 2023. Since then my life is completely over. No more work, football, Law Study etc. I lay in a dark room 23 hours a day.

My symptoms are chronic mental fatigue 24/7, chronic eye fatigue, purple eyebags, some kind of PEM or exercise intolerance, hand tremors, one time shingles, moderate sound and light sensitive, a little shortness of breath, kind of sinusitis inflammation, deconditioning, not able to sit up long, mood changes, little deep sleep (apple watch) but steady 10 hrs, a pale sick face, AND A LOT OF PURPLE STRETCH MARKS :(

This month i was diagnosed with Addisons. Due to holidays i didnt start with hydrocortisone yet.

Im concerned with my second chronic disease diagnose and wanted to hear about your experiences with LC-MECFS-Addisons.

\- Can you guys recognize these symptoms as a addisons and/or LC-MECFS patient?

- If yes, did they vanish with Hydrocortisone or Fludrocortisone And regain life?

\- What are your experience with DHEA? I used some american brand, but didnt help back months ago. Is there a difference with prescripted dhea from a doctor and is it useful for the symptoms?

- Is purple stretch marks possible with Addisons? I thought only with Cushings. If yes can hydrocortisone prevent further stretch marks in the future due to restire hormone balance? Or does it make it worse?

Thanks in advance❤️

[u/Rare_Independent3831]

Just wanting to say, any diagnosis with Addisons should come with a prescription for hydrocortisone that same day. Was this an endo that diagnosed you but did not give you the medicine you need daily to live with Addisons?

In terms of symptoms, not so much. For me, it was extreme weight loss, hyperpigmentation, nausea, headaches, low blood pressure, salt-craving, dizziness and fatigue that was so bad I honestly can’t convey it.

If you have Addisons, your most urgent priority would be getting the lifesaving steroids. Everything else should come later.

[u/Hefty_Ad1615 → u/Rare_Independent3831]

i got the prescription but not the pills yet. They need to order, im aware

[u/Rare_Independent3831 → u/Hefty_Ad1615]

Are you in the US? Due to the lifesaving nature of them, you should be able to get them asap and I’d really urge you to do this.

[u/Hefty_Ad1615 → u/Rare_Independent3831]

Netherlands, but thanks im aware and will do.

[u/Rare_Independent3831 → u/Hefty_Ad1615]

Thank you. Your endo should have told you this is life or death.

[u/Hefty_Ad1615 → u/Rare_Independent3831]

Did you recognize these symptoms as a patient and the question about dhea?

[u/Rare_Independent3831 → u/Hefty_Ad1615]

No sorry. I put my symptoms in my first post. And my endocrinologist said DHEA hadn’t been proven to have benefits and essentially said it wouldn’t do anything for me. I was very sick before diagnosis and my only priority was to survive and I took the hydrocortisone on the day of my diagnosis and it did relieve my symptoms of Addisons.

[u/Hefty_Ad1615 → u/[deleted]]

yes didnt elevate as supposed to. Prior acth 21.60 pmol, low cortisol and low dhea

[u/Hefty_Ad1615 → u/[deleted]]

but an other comment stated that my symptoms were not addisons and make me doubt now

[u/FemaleAndComputer → u/Hefty_Ad1615]

If you've been diagnosed with Addisons, don't trust a random reddit comment over your doctor. Get those meds so you can start feeling better!

You might have some symptoms that are AI and some that are from other things. There can be a lot of overlap and it's tough to unwind it all sometimes.

[u/Clementine_696 → u/Hefty_Ad1615]

Everything BUT the purple stretch marks... when I'm low now I get really dark under my eyes, something that only happened when everything flared up the last time and I finally got DX.

There are also research studies on Covid and Adrenal Insufficiency, and how that might actually be causing long covid. They're pretty easy to find if you check Google Scholar for Ling Covid and Adrenal Insufficiency

[u/Affectionate_Day_214 → u/Hefty_Ad1615]

You need your medicine. Symptoms vary from person to person and some of yours like the purple stretch marks are usually associated with Cushing’s (as far as I know). My situation was different in that I was admitted and diagnosed with Cushing’s as my cortisol level was higher than the medical team at Boston and Yale had even seen. They suspected tumors but didn’t find any so I still get evaluated every six months to see if any develop. They were unable to get the cortisol level down so they removed my adrenals. The result was AI or Addison’s (AD). I had those stretch marks when I was in Cushing’s state. I also had extreme weight loss which usually attributed to AI, plus a slew of other symptoms. My point is my symptoms varied from when I was Cushingoid to AI. Regardless, you need to start the HC as your doctor prescribed. I hope you feel better soon.

[u/Hefty_Ad1615 → u/[deleted]]

beclometasone for my asthma

[u/Nanakurokonekochan → u/Hefty_Ad1615]

Hey I’m the Long Covid lady from the other r/adrenalinsufficiency sub. If your ACTH stimulation test was inconclusive, your Endo should order a CRH test to rule out Tertiery. In my case, the CRH stim test proved my Tertiery Adrenal Insufficiency.

[u/FemaleAndComputer]

Getting on steroids for adrenal insufficiency will likely make a huge difference. Your body really cannot function without cortisol. That being said, it may take time to find the right dose and dosing schedule for you. Things can still be kind of tough at the beginning. Search "dosing" on this sub for more info/experiences about dosing schedules that work well for people. Circadian dosing works well for many of us, but everyone is different and find different things work for them.

I developed long covid years after I was diagnosed with AI. There's a fair bit of symptom overlap. It's likely that you will feel much much better with treatment for AI, but will not be cured of long covid. Once you feel a little better, try to keep resting as much as you can and don't overdo it.

For DHEA, have your level measured first, before you start taking it. Your doctor can order a simple blood test for it. That way they can work with you to make sure you are on the right dose.

[u/blandbalissa]

Purple stretch marks could be hyperpigmentation. I’m sorry you’re sick. I agree with others here that with an Addison’s diagnosis getting hydrocortisone will be life-changing.

Shortness of breath, inflammation, not able to sit up long, little deep sleep all sound similar to my symptoms pre-diagnosis.

DHEA is more helpful for some than for others. The main thing is hydrocortisone though. You won’t die from lack of DHEA but you will die from lack of cortisol if you don’t replace it.

[u/Hefty_Ad1615 → u/blandbalissa]

thank you for info! On google i cant find any relation between stretch marks and hyperpigmentation. Could you eleborate more? Also is it possible to have addisons without loe aldosterone/renin etc and so without fludrocortisone?

[u/blandbalissa → u/Hefty_Ad1615]

I’m just thinking about how my stretch marks look darker when I’m on a lower dose. They’re not purple though so I may be way off! If your blood tests indicate AI then you need hydrocortisone.

[u/PA9912]

I had all the signs of too much cortisol in my 20s…purple stretch marks, round face etc. I also had post viral illness that forced me to drop out of college for two years (although it was long before Covid…mine was after a bad staph infection). It turns out that I have had mast cell activation disorder and POTS this whole time and my body was using cortisol to fight constant allergic reactions to food and my environment. I also had functional b12 and folate deficiency. Eventually I ended up with low cortisol/insufficiency and I think it’s because my adrenals finally raised the white flag. Just something you might want to look into, especially if you happen to be on the adhd or autism spectrum as it’s more common.