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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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User Blogs
It was worse than just being ignored. The problem was this arrogant nurse was trying to make me feel invisible - As if I didn't exist - And that I just couldn't permit.
It happened at the clinic. This nurse was a freelance RN hired exclusively by another patient to do her infusions at my...
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I had met someone recently. And he led me on for a few weeks, really making me believe we could have a relationship. And then tonight, he said to me that he thought about it and he can't deal with my disability. He can't deal with the fatigue. So, I've just been crying all night over it. He...
Hi all!
I thought I would write an upbeat blog! It's about time, right? Well, next week the axe will fall "possibly." Hormones. So until then, I will revel in my good day. It was one good day out of 7, but I will take what I can get. Because that one day is so special, I hope to write...
Owwwwwwwwwww. Went foodshopping yesterday and flaring into today. Got the usual flare up last night. Pain, tons of pain. Feels like someone is ripping every nerve cell out of my body. People who don't have this never understand. It literally feels like someone is ripping apart the nerve...
Had another phone appointment yesterday with Dr. Buscher our CFS/MCS specialist. Seemed time to consult him since Jeremy and I had tried everything we could think of doing on our own but to no avail.
It didn't take Dr. Buscher long to figure out what is very likely happening to us. This year...
The Problem - We know CFS patients cant get any respect. We have solid data showing there are high rates of CFS prevalence (@1,000,000 people in the US), that CFS causes high economic losses (up to 20 billion dollar a year), and that it causes high rates of disability. In short we have data that...
My favorite line in the "Bourne" trilogy is given by The Professor. He appears briefly in the first installment, but it is in the second film, the Bourne Conspiracy, that Clive Owen utters the quintessential phrase of the movie. After dueling with fellow agent Jason Bourne in the countryside...
It was long and lean, clean and straight, stunning with its maroon color and white convertible top. My Dad handed me the keys and said, Cmon. Im teaching you how to drive. Like any excited 16 year old, I slid behind the wheel. Stepping on the gas pedal, the car responded exactly like it...
Often, we are asked as CFS folks, was anything going on around the time of our becoming ill. I came down with a virus, but I think it started before that. As in my Mothers womb.
I am sure my Mom would not be happy if I announced my familys dirty laundry, but its something I find...
I wrote a letter to a good friend last night and oddly, turns out we both had the same ideal - that the things I said in the letter need to be heard by more than just one person. This is a very candid view of my life right now. Edited only for name, "Late night chat"
Hola! :)
Its about 1...
I am trying to fully quantify all that being sick has taken away from me. The progressive downward movement has been much like losing my balance on steps covered in ice as I claw at the air in a desperate attempt to catch myself. I am unable to finish college. I am unable to have a career. I...
Chris, the Patient Advocate regularly provides overviews of ME/CFS conferences and events. Here he provides an at times hard-hitting take on the latest Invest in ME Conference. Thanks to the PA for his years of communicating with the ME/CFS Community. Thanks for allowing us to print his blog...
Last night, I tried to give my 15 year old son directions to the my youngest son's Little League game across town and I got lost. I grew up in this town and I know it well. I've never been one who navigates by north, south, east, west or by street names - I navigate by internal maps and...
I went to Walmart with a friend today. I knew I was risking a flare, but I had a five dollar gift card to use up. So we went to Walmart. Started walking around, smelled a million chemicals and toxins. Started to get a headache. Then, started to flare up badly. By the time we were at the...
Some patients report that their doctors ask for information about ME/CFS. This list helps fill that request. It also includes information for ME/CFS patients who want to understand the illness. Keep in mind that there are no high-probability treatments for ME/CFS. All we have are treatments that...