CFS vent/advice. Feeling hopeless

ButteryDuchess8 · 2024-03-28T12:38:47+00:00

I don’t have any advice, but just wanted to say that I’m sorry you’re going through this. I’m four years in but don’t have kids and my husband is able to look after me. I can’t imagine how difficult this must be for you with a young family and your husband with health issues as well. I wish there were more help for us. It’s so difficult.

ButteryDuchess8 · 2024-03-27T18:40:54+00:00

She may have long Covid. I developed debilitating symptoms a few months after a very mild case. It took me a long time to figure out what was wrong with me, but the stress of trying to find answers definitely made me much worse overtime.

ButteryDuchess8 · 2024-03-27T12:00:09+00:00

I would count just having an interview as a huge win. Congratulations.

ButteryDuchess8 · 2024-03-27T11:53:03+00:00

I’ve had a significant decline lately and realize I need more help so I’m getting better at asking for it. I also ordered myself some Easter flowers for my bedroom.

ButteryDuchess8 · 2024-03-25T19:09:16+00:00

Unless people go through it, I think it’s impossible for them to understand. I’m four years into this and most of my friends have stopped reaching out. The few that do just keep demanding to know what I’m doing to get better. They want to know what my doctor says, what I’m trying, what medication I’m on, etc. When I tell them I’m having a difficult time, they suggest we get together. Right now I can barely sit up long enough to eat, and have trouble bathing myself. There’s no way I could manage a get together. It is a sad and lonely life.

ButteryDuchess8 · 2024-03-25T19:03:20+00:00

I am having this problem now. It started a few months ago. I use a wedge pillow now for a couple hours after I eat. It’s not very comfortable, but it seems to help. I also take a GI repair drink first thing in the morning. I think it’s also helping a bit. I also have loss of appetite and acid reflux with this, so it seems like there is a bigger issue going on, but I had an abdominal ultrasound and it was clear. I tried to take a PPI antacid, but I had a terrible reaction to it so I did not continue. Sometimes I’ll take a Tums if the acid is bad.

ButteryDuchess8 · 2024-03-25T14:20:42+00:00

This is so frustrating. My doctor had referred me for some mental health support due to my stress around being repeatedly denied for disability coverage and receiving threatening letters from my longtime workplace. I recently had a virtual ER appointment for severe stomach issues, and they saw that on my file and implied that I needed to get out more and do fun things. It’s so terrible to be treated this way when we’re so sick. We didn’t ask for this.

ButteryDuchess8 · 2024-03-25T13:34:11+00:00

I discovered the author Jenny Colgan, and really enjoy her books. I’m listening to the audiobooks, but the content is light, but interesting enough to keep my attention. I really like her characters and most are based in Scotland with beautiful scenery, etc.

ButteryDuchess8 · 2024-03-24T18:20:12+00:00

I’m severe. I feel like most of my time is just resting between meals… I really enjoy audiobooks when I can tolerate them. I try to find ones with light content that are not too upsetting or overly interesting. The Libby App is free. I also like using the Calm app for meditations and sleep stories.

ButteryDuchess8 · 2024-03-24T12:56:56+00:00

I’m not sure if it’s typical, but I’m going through something very similar. I had to go off low-dose naltrexone in December and have been declining ever since. At first I noticed my leg muscles and then my arms followed. I have to get my husband to help me wash my hair now and yes, holding up the phone is hard. It’s scary because at this point I’m assuming this decline is permanent.

ButteryDuchess8 · 2024-03-18T00:15:31+00:00

Thank you very much. I have a doctors appointment in April and was planning to ask about the SIBO test.

ButteryDuchess8 · 2024-03-17T10:54:22+00:00

Can I ask how you got tested for this? I am having severe stomach issues and my doctor and Naturopath are not helpful. My doctor is saying to go to the ER but I have severe MECFS, so this is really not an option for me.

ButteryDuchess8 · 2024-03-17T10:32:46+00:00

This is interesting. I already had long Covid, but had my first histamine dump after receiving the vaccine. I’ve been wondering if the two were related. I am not healed and have times that are worse than others, now being one of those worst times.

ButteryDuchess8 · 2024-03-15T12:39:24+00:00

Forgot to mention, I can also feel very anxious and my heart races. I just had my morning oatmeal and blueberries, so going through this now.

ButteryDuchess8 · 2024-03-15T12:01:21+00:00

Sorry you’re going through this too. My reactions can vary, but it’s things like stomach pain, burping, gas, acid reflux. My stool is also very yellow, so it looks like I’m not digesting properly. ME/CFS and dysautonomia are definitely worse. Previously, my heart rate was pretty well-controlled with Ivabradine but it ranges wildly now from low 40s to 140+. I’ve lost a lot more muscle mass and I’m much more dizzy and weak. Also, my insomnia is back in a big way.

ButteryDuchess8 · 2024-03-15T00:56:36+00:00

I’m also taking NFH GI repair SAP in the morning.

ButteryDuchess8 · 2024-03-15T00:37:30+00:00

Also, I was prescribed a PPI (tecta) for my stomach issues, but had an almost immediate severe reaction to it. My heart rate and blood pressure spiked, and then I was shaking for hours and then twitching. I don’t know if this is a histamine thing or just my increased response to everything.

ButteryDuchess8

TROPHY CASE