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    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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Search results

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    Productivity and Remuneration for the Brain Fogged

    For those who experience brain fog how do you deal with the fustration of not being able to do anything useful for large parts of the day. In terms of physical activity my symptoms aren't too bad, I would consider myself mild. I can get out and about without problems. Excercise or sustained...
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    How to go about an Elimination Diet

    Yes I think, removing only a few groups of food will make the elimination diet alot more managable and less likely to lose weight or become deficient in anything. With regards to eating more fat, I never feel satiated from fat, I always require some carbs to feel satiated. I suspect I may also...
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    How to go about an Elimination Diet

    I suspect that certain foods may be playing a significant role in driving some of my symptoms. Given that potentially you can be intolerant to almost any food, what would be a sensible way of approaching the elimination diet. My diet mostly consists of lentils (green and red), rice, chicken...
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    Comment by 'Arise' in 'Filling the down time'

    "Over the years I have bought paints and artists’ materials over and over again." Sounds a lot like myself. I feel if i keep buying new art stuff, then it helps to keep me inspired and also "invested, which perhaps would push me to keep doing art no matter how terrible I might be at it. "Am I...
    • Arise
    • Blog entry comment
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    Ku Shen-Sophora Flavescens-Oxymatrine

    After reading about the potential of oxymatrine in ME/CFS, I decided to buy some Ku Shen Herbs from bristol botanicals (not the concentrated form). The way I take the herb is to boil it in water for about an hour and then strain the water into a cup and throw away the herb, then drink the water...
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    sleep meds - cant get melatonin thro NHS

    I am in a similar situation to you with regards to sleep. I generally don't have too much trouble falling asleep but the quality is poor. I often wake up too early then fall back to sleep but this sleep is very light. I was initially prescribed amitriptiline, what I found was that it often...
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    Guilt and Self-doubt... Help?

    I get this all the time. It's tricky because sometimes pushing yourself can make things worse and my mind goes back and forth with these thoughts. I haven't figured out how to deal with it, so don't have any advice. But I completely understand how you feel.
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    ENT specialist UK

    I do have a dentist and the last time I went for a check up they said everything was fine. However I didn't mention anything about my jaw, I generally don't have great trust in dentists i guess. I will book another appointment with my dentist to see what they say first. The reason why I...
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    ENT specialist UK

    Does anyone know or have seen an ent doctor/specialist ? I have pain on one of my jaws and my jaw also clicks when i open my mouth. So im hoping that if these can get fixed some of my other symptoms might improve.
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    "A Closer Look at Fatigue" NHK world

    Just watched some of this today showed some really interesting stuff regarding the effects of stimulation on a fatigued brain and also mentioned CFS in a sensible manner. The programme will air again tonight and tommorow. http://www3.nhk.or.jp/nhkworld/en/tv/scienceview/201602020600/ "Fatigue...
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    Do you think you were born to get ill

    @Research 1st facisnating post. It interesting that you mentioned "CFS light", @Hip on this forum has a blog and also wrote in this forum about passing a virus (enterovirus) to friends and relatives who were only moderately affected(CFS light?), whilst Hip himself more greatly affected. Given...
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    Do you think you were born to get ill

    Digital dog, Im glad you brought this topic up. In way I think you are correct, in that the way most people live their lives and enviromental factors would make it almost inevitable that some people would get ill. I often see, big differences of vitality and general robustness even in relatively...
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    Urine colour with methylation and pyrole protocol

    Are you taking B complex vitamins? When I was taking B vitamins my urine became a greenish colour. http://www.livestrong.com/article/498105-vitamin-b-complex-vs-green-urine/
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    New doctor wants to treat empirically for Lyme, good idea?

    I was just goint to ask about why these methods aren't used more frequently. I don't know much about lyme but I'm suprised that lumbar puncture doen't seem to be used often?
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    Did Vitamins ever help you get better? (orthomolecular treatment)

    I'm the same, I even had subcutaneous b12 injections that I noticed no difference at all good or bad. It seems they work for some, not for others. A few things such as Candex (enzyme mix) and Vitamin C may have had some effect over a period time, but is difficult for me to say if they were...
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    Suggestions for specialists in U.K?

    Hello I just wanted suggestions for any specialists that can help with ME/CFS, they don't necessarily have be ME/CFS specialists, but I would consider a good rheumatologist or neurologist. I already know of Dr Myhill and have already done the mito test and followed her suggestions. Julia Newton...
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    How would you describe your brain fog?

    Ah, one of the many great banes in my life. I actually get many different types of brain fog. So it can be difficult define brain fog clearly. So I tend to say certain key points, such as: - a lack of mental stamina - inability to bring thoughts together or to hold on to a thought - lack of...
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    Fatigue: late night or early morning type?

    I get different types of physical fatigue which can come and go and fluctuate in intensity. However it is the mental/cognitive fatigue if you can call it that, which is most prominent for me. The mental/cognitive "fatigue" has been with me for 5 years and has been relentless in that it has...
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    Sleep attacks

    I haven't, I was actually reading this thread last night: http://forums.phoenixrising.me/index.php?threads/does-going-to-a-sleep-study-really-help-anyone.27699/ Seems to me that most sleep tests only check for sleep apnea. So not sure if all sleep studies will be useful as PallasKat has said.
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    Sleep attacks

    This is pretty much what I do, I tend to avoid sleeping in the evening as that sometimes means I cannot fall asleep at night. But make exceptions if I cant function.
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    Sleep attacks

    Recently I've been experiencing what can be best described as "sleep wave attacks". What happens is that at certain times of the day I feel extremely sleepy for a short period of time. These sleep waves occur usually at the following times. 1-4pm, 6:30-7:30pm (after eating) and 8-9:30pm I...
    • Arise
    • Thread
    • Replies: 5
    • Forum: Sleep
  22. A

    Help! Need mattress recommendations asap

    I have previously made a thread about mattresses. You may find some helpful info on there. http://forums.phoenixrising.me/index.php?threads/bedding-and-mattresses-do-they-make-a-difference.22327/ I was recommended the following by a member (jeffrez) on here, although I have no personal...
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    Working part time and disability in UK

    2.8.9 "For a scoring descriptor to apply, the claimant’s health condition or impairment must affect their ability to complete the activity on more than 50 per cent of days in the 12 month period. Where one single descriptor in an activity is likely to not be satisfied on more than 50 per cent of...
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    Working part time and disability in UK

    I've been skim reading through this document https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/315970/pip-assessment-guide-mw-020614.pdf Looking at the examples starting on page 92, the criteria does seem strict. Keela Too said "2.6.9. Many conditions fluctuate with...
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    Working part time and disability in UK

    Does anyone have experience of working part time and receiving any benefits in the U.K. It seems to me that if you work part time it really goes against your entitlement to disability benefits. Looking at this example from a document by the age.org.uk website. it seems unlikely that I would be...
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    Candida & Biofilms - Theory & Protocol

    Some very good information on this thread. One issue that I have with this candida business, is that it is often associated with a collection of certain symptoms. How can one reasonably know if someone has a candida issue that needs resolving. I know there are stool and blood antibody tests...
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    Weird feeling in the head, when temperature is high

    I haven't noticed any correlation between standing and sitting. I will keep track of my blood pressure and pulse to see if that may have any relation.
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    Weird feeling in the head, when temperature is high

    I seem to get a strange sensation in the head when the temperature is above about 26° Celsius. The sensation is not like a headache, however it feels like that there is some kind of pressure or inflammation in the head (mainly side of the head just above ears), it's certainly not dehydration...
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    Chronic sinusitis without yukky mucus: what's wrong with me?

    Maybe hayfever? I find this interesting because someone on this forum once mentioned accupunture being effective in curing hayfever, and I know that hayfever often causes sinus headaches for me.
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    metametrix discontinue dna pcr technology

    Hi I believe they still use PCR tech for the non pathogenic bacteria, but use "Ova and parasites" technology pathogens. So I think they have actually improved it by combining the best bits from each others tests. However I am not sure what "ova and parasites" technology is. Also be aware that...