• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

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    The Basic Sleep Poll

    I participated in a sleep study about a year ago. The doctor who conducted the study also works with FM patients. He diagnosed me with alpha/delta sleep disorder and prescribed Xyrem. He told me this was a common disorder among fibromyalgia patients. The Xyrem did help with the trigger...
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    CFIDS without Fibromyalgia/pain ?

    I was diagnosed and treated for FM. There are 13 points, called trigger points, that are associated with FM. Touching these would be like sending a bullet into my body. I no longer have that pain. However, I still have the CFS symptoms and sleep disorder. So you would know the pain of FM if...
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    Bad reaction to flu shot

    Thank you for sharing his information. I have not had a flu shot because I was afraid of injection anything more into my system. I am sorry you had such a terrible reaction.
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    Daily Worldwide Prayer for ME/CFS/FM - Please Join

    This is so awesome. I want to thank you for praying for me and I will be doing the same for all of you who suffer with ME/CFS, including those who may not know a diagnosis.
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    More about exercise...

    One of the many things I miss is working out. It was one of the activities my husband and I did together. I was in the gym 3-4 times a week and a yoga class once a week. We'd walk in the mornings together. I can now do none of those things without horrible repercussions. I miss it and I...
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    Valcyte (plus) Update

    I am so doing a HAPPY DANCE for you. I have considered going back to testing for EBV, HHV again since I have taken such a nose dive lately. And asking for valcyte from my PCP. He's great at working with my suggestions. But just wasn't sure if there would be enough of an improvement to do...
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    lyrica

    Lyrica works great for some people. I'm glad it works for you. When I took it, I had terrible side effects, like jerk muscle spasms at any given moment. I would drop things and spill things. I took it as a part of a drug trial and was instructed to take it during the day at at night. I...
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    What do you eat for breakfast?

    Whey protein powder in coffee, or juice along with the mega load of vitamins. Most protein powders do not contain vitamins. It works for later in the day too when I've lost my appetite for anything else. When I am having a very bad day Starbuck's latte and chocolate protein powder is awesome.
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    Yoga

    The Yoga routine I USED to follow was a series Namaste (also on cable tv) because of the continues flow of movement, balance and stretching. However, after I discovered I have degenerating discs is all of my neck and other places in my spine, I have been told by the surgeon, my pain management...
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    Hormones

    Having extremely painful periods all of my life, the hysterectomy was a great relief. I am on estro-test which is an estrogen testosterone combo and works well for me. I am also on compounded thyroid. It is so important to have hormone balance !
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    What Is Your Body Temperature? Rethinking 98.6

    I was so shocked to read the results of this poll. I truly expected the average temperatures to be above normal (98.6). An alternative medical doctor had me take my temperature for 10 days, first thing in the morning when I woke up. I would register in the low 90's, 92-94. Thyroid medication...
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    What Types of Fatigue Do I Experience Poll

    Of all these, the brain fog is the one that is the hardest for me. I was the planner/organizer. I was the supermom breadwinner with a power job and power paycheck. It is so hard for me to not be that person anymore.
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    Sleep That Isn't Sleep

    I completely know what you are talking about because I have the same experience. You are in a wakeful sleep. Don't know if you have been in for a sleep study. I had one and it revealed alpha/delta or alpha intrusion which is very common to people with FM. Getting a deep sleep is very...
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    The Family Member ME/CFS Prevalence Poll Take II

    I have concerns about spreading this to my husband, since it feels like a virus. He's still healthy after 6 years of exposure. So I just wonder if my sleep disorder is a contributor to the spread of the virus, meaning I don't have the immunity he does. So although we may both have been...
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    meds for deep sleep

    Last year I had a sleep study which ruined me for a week. I was diagnosed with alpha intrusion or alpha over delta. Alpha waves are the short bursty brainwaves of an active brain. In my case, they continued all night, so I do not ever get REM 3/4 sleep. Xyrem was great while my insurance...
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    Comment by 'Becky' in 'Back to work?'

    When I applied to HR, I was asking for a medical leave. What I discovered, there are two types of medical leaves, one is a set time (like a month), the other is intermittent. These are federal programs, which means you cannot be terminated for time away from medical conditions. My doctor...
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    Comment by 'Becky' in 'Back to work?'

    Glad you are able to work and have a group of friends. I know the isolation is horrible. It would be a good idea to tell your boss that you are recovering from an illness. As my husband tells me, everyone does not need to know everything. You would not need to tell him what illness, just...
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    Xyrem in Fibro patents improved EEG sleep physiology & sleep-related FM symptoms

    I was using Xyrem for about a year with great results. Through a sleep study, I was diagnosed with alpha intrusion. My insurance covered it for awhile, but now I would have to pay $1,600 a month to get it again. Xyrem gave me the rest I have needed for 8 years. I woke up refreshed and clear...