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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blog entries by Nightingale
I've been feeling pretty blue lately, so I thought I'd write about something that makes me happy - the paleo diet. It makes me happy because changing my diet has changed a lot of things in my symptoms and my life, not just one area like a medication would.
I urge all of you to watch this...
It's summer where I live, and worse yet, we're in the middle of a heat wave. It's been over 30 degrees Celsius for a few days, which is 86 Fahrenheit, and I don't have air con, sadly. I've only just started to figure out the best ways for me to keep cool and I thought I'd share.
- Start the day...
Frustration.
I've been uncomfortable and in pain ever since I got CFS, but this past week has been awful. It seems like every day my whole body is covered in flu-like aches and pains. Every muscle and joint cries out for attention. No amount of bed rest, pillow rearranging, hot baths or...
It's been a hard few months.
On one hand, physically I've seen some really encouraging improvements. I've been able to do more. I've cut out gluten, which was making me very fatigued after meals. I feel hope about my physical condition moreso than ever.
But there was a big setback. I'm an...
My husband started playing D&D.
I'm glad. He's really enjoying it. He's my carer, so he needs friends and a life outside of me. I thought I was really happy for him.
Then today, an unexpected feeling came over me. I'm getting ready to celebrate tomorrow the Autumn Equinox. I can't do much, but...
I'm writing this because it feels too painful to talk to my family members about it. Painful for them.
I have MCAS and I feel like I've just started another flare of anaphylactic reactions. I had a reaction last night, none today, but I have so many symptoms that are mast cell related. I don't...
I was just discharged from hospital a few hours ago. I had another anaphylactic attack, probably the worst yet. I didn't get better until I had had four shots of adrenaline: 2 epi pens at home and 2 shots given by paramedics. I was so in and out of conciousness that I barely remember any of it...
CFS weddings!
Does your heart fill with fear at the thought of arranging such a huge, expensive event that you might not physically be able to get through? I feel like mine should have when I started planning my wedding, but honestly I was so naiive, so optimistic. And to be honest, the actual...