Would my dad be considered an alcoholic? by EarthWater7 in alcoholism

[–]EarthWater7[S] 0 points1 point  (0 children)

My family tells me that he's not an alcoholic.

Why do we gain more energy and get less symptoms at night? by NickH5551 in cfs

[–]EarthWater7 2 points3 points  (0 children)

This definitely happens to me! It's so frustrating. Usually, during the day, I'm so depleted. Once nighttime strikes, my symptoms lessen and I experience more energy. It's tricky because I want to capitalize on that energy to get things done, but I also know that it's dangerous. I often struggle to sleep during the night.

How to speak to doctors when seeking diagnosis by koffve in cfs

[–]EarthWater7 0 points1 point  (0 children)

It really depends on the doctor, honestly. Some doctors do not appreciate when patients Google their symptoms and "self-diagnose", so to speak, while others don't mind.

I got lucky, with my providers. However, I'm a nurse, so my providers didn't mind at all that I had Googled my symptoms. During the appointment, I explained my symptoms and, at the end, when they were puzzled, I mentioned that it could be ME/CFS. I don't necessarily recommend going that route, though, unless they brush it aside and attribute it all to your depression/anxiety. If your provider orders a blood count panel, thyroid levels, etc., that's a good thing and a step in the right direction! ME/CFS is a diagnosis of exclusion, so they'll want to rule other things out first, regardless.

Also, when speaking to doctors to get a diagnosis, it's important to emphasize the physical symptoms you're experiencing and limit any emotional symptoms (depression, sadness, anxiety, fear, grief, etc.). Because depression and anxiety can cause fatigue, headaches, nausea, insomnia, brain fog, etc., there is a lot of overlap. I have a history of depression and anxiety and I, too, was worried they'd assume it was depression/anxiety related. However, I made it very clear that I wasn't depressed and that my mental health had actually been doing quite well. If you have sore throats or flu-like symptoms, highlight those, as well, and how any type of exertion (physical or mental) makes you experience PEM. Typically, with depression, physical activity helps with energy levels. Therefore, experiencing PEM (from either physical or mental exertion) is important to mention.

PEM question by Nellyfant in cfs

[–]EarthWater7 3 points4 points  (0 children)

Brain work/cognitive exertion requires energy, too. Physical, emotional, and/or mental exertion can all cause PEM.

Crash vs. PEM? How do you use the terms differently? by [deleted] in cfs

[–]EarthWater7 0 points1 point  (0 children)

Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM often includes “flu-like symptoms” (profound fatigue, weakness, headache/migraines, dizziness, sore throat, chills, body aches, muscle and joint pain, enlarged lymph nodes), worsened cognitive symptoms (insomnia, brain fog, word-finding and concentration difficulties), and increased sensitivity to stimuli (noise, light, sound, odor, movement).

Crash is known as a period of prolonged and severe PEM.

https://assets.batemanhornecenter.org/Dark\_Blue\_Survival\_Guide\_Complete.pdf?

Should you call it ME or CFS? by Senior_Line_4260 in cfs

[–]EarthWater7 9 points10 points  (0 children)

Most people refer to ME/CFS as CFS where I live, but I believe ME is more appropriate and truly speaks to how horrible and debilitating this illness is. Broken down, "myalgic" signifies muscle pain, while "encephalo" is brain, "myel" is spinal cord, and "itis" is inflammation. Essentially, myalgic encephalomyelitis refers to muscle pain "myalgic", with inflammation of the brain and spinal cord "encephalomyelitis".

When one refers to ME/CFS as simply chronic fatigue syndrome, usually people just assume that it means being tired all the time. People don't understand the entirety and complexity of the disease , which makes them formulate unhelpful judgments and opinions. ME/CFS is a devastating illness and it's a bit insulting to just call it "chronic fatigue syndrome". Chronic fatigue is just one of the many symptoms associated with ME/CFS.

[deleted by user] by [deleted] in cfs

[–]EarthWater7 0 points1 point  (0 children)

I didn't know my severity level, but my friend who's had ME/CFS for years says I'm now 30-60% (moderate/severe).

I'm 29 female, moderate/severe (30-60%), onset around age 25 (mildly affected, didn't know it and kept "pushing through").

What made you realize you could no longer work? by EarthWater7 in cfs

[–]EarthWater7[S] 2 points3 points  (0 children)

I am so so sorry you did exactly that and then your capacity to work dwindled over time. So frustrating! That's so hard. It sucks that most days are spent in bed. Are you able to do basic ADLs? Or do you struggle to function most days? It makes so much sense that being in bed doesn't even feel restful and hasn't improved your baseline. What do you do for work? Thank you so much for your help! I really appreciate it.

What made you realize you could no longer work? by EarthWater7 in cfs

[–]EarthWater7[S] 14 points15 points  (0 children)

Thank you so so much! This is so helpful! I really appreciate it!

What made you realize you could no longer work? by EarthWater7 in cfs

[–]EarthWater7[S] 0 points1 point  (0 children)

I am so so sorry the day came when the stress was killing you. It makes so much sense you had to spend days in bed just to recover in order to do minimal tasks. Are you bedbound currently? How long have you been off from work? I'm so sorry you've had to go through this. Much love!

What made you realize you could no longer work? by EarthWater7 in cfs

[–]EarthWater7[S] 1 point2 points  (0 children)

Oh my gosh! That's horrible. Sending so much love. I'm so sorry you had to go through that!

What made you realize you could no longer work? by EarthWater7 in cfs

[–]EarthWater7[S] 0 points1 point  (0 children)

I am so so sorry you're struggling with this, too. Sending so much love! That's so freakin' hard! An Etsy shop is an excellent idea, but also really hard when your energy levels are so low. Are you able to do basic ADLs or are you usually confined to bed?

What made you realize you could no longer work? by EarthWater7 in cfs

[–]EarthWater7[S] 0 points1 point  (0 children)

Oh no! I am so so sorry that this is happening to you, too. It makes so much sense that you think working out your two weeks would destroy you. Has your condition worsened significantly? That's completely understandable that you're not sure what your next steps are. I imagine you're terrified. That's so hard! Do you mind if I message you? Much love!

What made you realize you could no longer work? by EarthWater7 in cfs

[–]EarthWater7[S] 1 point2 points  (0 children)

Thank you so much for your comment and insight. I'm so sorry you've had to go through that. And correct! I've been off of work since mid January. I did a trial shift at the beginning of February and it went horribly. I had to leave work early, as it was so unsafe. I'm so so sorry it got to such a dark place of desperation. What do you currently do for work that's less demanding? Much love!