u/aslipnslideintohell

Hi all, I've been trying to reduce sensory stimulation to rest more effectively, but I can't seem to stop reaching for my phone. Do you have any tips for progressively reducing phone use? I don't even do anything of value on my phone, it's usually just mindless scrolling on social media, but I still can't seem to stop. I've already tried alarms to tell me when I've exceeded a time limit for certain apps, but I just ignore those because I can't hold myself accountable unless I'm under some kind of threat lol

Has anyone else experienced a sudden, sharp decline in their condition without a clear cause?

I've been off work for 4+ months in order to rest and learn to pace myself better, but somehow I've managed to get significantly worse compared to when I first took my leave. I was working M-F for 40 hours a week before going on leave.

At the start of my leave, I used to be able to leave the house regularly, go shopping, see friends, etc. I still became fatigued and symptomatic, but I was able to do it. Now, I can barely leave the house or walk more than 2-3k steps a day without experiencing a crash. I'm becoming sensitive to light and screens. I don't really have more than 5-6 useable hours in the day where I can at least do light activity like reading, and I still have to take constant naps and rests. By 8 or 9pm, my eyes hurt so bad that I can't do anything besides lay in bed and maybe listen to music.

I haven't gotten a virus/cold in the last 4 months and nothing has changed as far as I'm aware. My medical team thinks that I may have become deconditioned from being off of work for too long and losing my routine. I'm sure the hot weather is impacting me as well but it seems disproportional to the level of decline I'm experiencing.

I don't know how to stabilize myself or find my baseline because it seems to change and decrease by the week. I don't understand how to toe the line between maintaining my usual level of activity in order to preserve my energy envelope and rest/pace appropriately to avoid PEM. I'm terrified of what's happening and don't know how to stop it.

Has anyone experienced something similar?

Hi all, has anyone experienced increased adrenaline surges from Midodrine use?

For context, I have POTS, orthostatic hypotension, and ME/CFS. MCAS is also suspected but not confirmed. My CFS is the most severe out of all of these diagnoses.

I've been taking 2.5mg of midodrine x 3 per day as prescribed by my internal medicine doc for 2 weeks and noticed that I'm having more frequent adrenaline surges. The effect on my BP has been minimal because the dose is so low. It helped marginally at the start but now it has basically no effect. I don't know if I should continue with it and hope that the side effects subside or stop it.

I originally was prescribed 0.01mg of Florinef but after only a week of use, it caused me severe insomnia. I don't know if it would be worth trying again at an even lower dose (e.g., by splitting the pill in half).

I'm already taking Zyrtec 10mg once a day and it helps with my sleep and potentially has helped with my nighttime adrenaline surges (not sure) but it hasn't had any effect on my daytime adrenaline surges.

The problem is that I can't take anything like clonidine/guanfacine or a beta-blocker because my BP is consistently low (usually in the 90/50 range) and my resting heart rate is also very low (usually around 55). My heart rate gets even lower when I'm asleep (around 45-50).

Is anyone else in a similar boat and has anything helped you? The adrenaline surges are causing me PEM and completely incapacitating me. They're also terrifying and make me feel like I'm literally about to die, every single time. I can't see my internal medicine doc for advice until late July as that's his earliest availability. I just wanted to hear from other people with similar experiences.

Thank you. <3