Macho319

@Derek1987 Did any of what the doc suggested, help? If so how have you improved?

@michele0209 did you ever find out what was causing this? I experience fatigue in my arms and legs as well.

@MomtoGiuliana I’ve had most blood work. Recently my vitamin D came back low so they started me on supplements. I think it’s from a lack of oxygen but not sure what’s causing it. Lung docs say I’m fine. Fludrocortisone put me into heart failure but once I stopped I’m not in it anymore. Cleveland Clinic swears I’m not in heart failure so now they are referring me to their autonomic guy there. I can’t see him until October though. It’s been almost 5 years and still no real answers. I’m exhausted 😞

Hi everyone! Does anyone notice their fingernails curving downward when they grow out? I believe it’s from lack of oxygen but no one can tell me for sure or if it’s Dysautonomia related or something else. Does anyone else notice this? No clubbing, just curving down.

@Mikayla Update on this. The Cleveland Clinic put me back on this in November 2023 and it put me into acute heart failure! I knew something was wrong because I felt awful and short of breath. I immediately stopped it after the test and repeated the test in February 2024 with normal results. I have no idea why it put me into heart failure but I won’t EVER touch that drug again as long as I live.

@Sarah Tee I have been diagnosed with this by the invasive cardiopulmonary exercise stress test. It's getting worse over the years and harder to do things. One UCLA doc says I have Dysautonomia. One said I have heart failure. I came to Cleveland Clinic and they gave me Florinef and it put me into heart failure. I stopped taking it and now I'm not in heart failure. I just have preload failure. Interestingly enough when I exercise in the upright position my pressures reduce consistent with preload failure but when I exercise on my back my pressures stay normal and even increase appropriately. Cleveland Clinic is STUMPED! If they are, imagine how I'm feeling!!!

Interesting. My breathing becomes restricted almost immediately after I lie down. Then after about 5-10 mins it goes away. Sometimes it's quicker and sometimes longer.

@Derek1987Florinef put me into acute heart failure preserved ejection fraction. It made me feel horrible! I knew it was the drug so I stopped it and retested and now I'm not in heart failure anymore. I also read heart failure is a side effect of Florinef as well .

Oh my gosh I thought I was the only one who felt this! I get crazy anxiety /adrenaline feeling after eating. It usually happens after dinner but it's the worst!

I HATE this medicine!! It LITERALLY put me into acute heart failure! In November 2023 I was tested at the Cleveland Clinic and it showed HFpEF because my pressures were elevated. I told them it was the Florinef. I stopped and restested and now I'm not in heart failure. That medicine was so bad for me!

@Pistol I did and it was normal. I initially thought the same thing as well.

Hi Everyone! I hope all of you are doing as well as can be. I'm still fighting the good fight still searching for answers. I saw the Cleveland Clinic this week. They don't think I have heart failure which shocked me. They think I only have preload failure so we are going to repeat the Exercise Right Heart Cath but this time with a fluid challenge and Passive Leg Raise. Anyhow they put me on Fludrocortisone and I'm not liking it. About 20-30 mins after I take it I feel this strange pressure/ache in my chest/neck area. It doesn't hurt but it seems like super concentrated anxiety or adrenaline in only that area. I hope I made sense. Has anyone experienced similar? As always all thoughts are welcome. Thank you in advance!

@MikeOLOL! I believe it's Post Exertional Malaise 🙂

@Looking_for_lightThe interesting thing in my case is I deal with the opposite. I have non-diabetic reactive hypoglycemia. It usually happens after breakfast, but before lunch. Intermittent fasting has pretty much taken it away but maybe once every 3 months I’ll have an episode. My sugars are rarely high and I think they are on the lower end to be honest. I don’t go higher than 130 very often. I think it’s my liver doing it but the docs don’t agree, as usual!

@Looking_for_light Wow this is amazing! I'm going to copy it and do some more research. Thank you so much for taking the time to post this.