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

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    My PEM episodes feel like a hangover

    yes, my pem often feels like a hangover. it is so odd to be hungover without drinking alcohol. CFS expert dr Klimas and others say that cfs patients are chronically dehydrated. (maybe due to out low blood volume?) and we should drink lots of water and those who need it take electrolyte...
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    ME-friendly Primary Care Physician in Durham, NC area?

    hi Amy how terrible. ironicly i just had a similar experience. i am here in durham temporarily and recently had to see a dr regarding sleep medications due to CFS. it was a horrible experience!!!! the dr was sooo dismissive of CFS. just no knowledge about it or belief in it at all. grrrr...
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    Weds/Thurs CFSAC meeting now on - watch live, be counted

    thanks Sasha! I am watching it now. was easy to do. each of us who watches online is standing up for CFS patients. I certainly hope everyone on here who can, will also watch it. we have to stand up for ourselves!!! bigmama2
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    What is a High Sedimentation Rate for Someone with CFS?

    also note- sed rates do change. one time i had a very high reading - like yours mya- 42 or something. then got retested few weeks later and it came down to normal rate. but mine has never been low low, at least not the few times it was tested.
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    Might go to Dr. Klimas' office

    sushi- i agree w what dr klimas said!
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    How do you describe "flu-like"

    hi all- update on my lungs and lung tests are on my other post- about flu-like symptoms and lung ache. andrew- sorry for getting your thread a bit off track. take care everyone, bigmama2
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    what can help the "flu-like" feeling? and lung ache?

    thanks SOS for your input. it seems like almost all of us have allergies. when my allergies get very bad it can feel flulike. other times with no allergy symptoms i still get the flulike symptoms. i agree about the pushing too hard can cause it too. i had pulmonary funtcion test today. it...
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    Might go to Dr. Klimas' office

    thanks for the ideas. i had gone to a local cfs support group a few times and asked if anyone knew of any primary drs around here that can handle cfs and they all said no. i see my dr again next week and i will try again for the referral. if its a no go- i will try to find another dr- might use...
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    How do you describe "flu-like"

    thanks ukxmrv! i was on valtrex years ago. cant remember if it helped flulike feeling, but it did help my cognitive functioning, and did help a bit w cfs in general. maybe i will try it again. glad you have found some things that have helped you. i hope to see dr klimas's clinic at some point...
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    what can help the "flu-like" feeling? and lung ache?

    ive had this on and off for years. right now it has been worse for the last 6 weeks. also having lung ache. saw dr-did lung xray- looked normal- and got antibiotics for suspected bronchitis or mild pnemonia. its been about 2 weeks since i took the antibiotics- no improvement. and asthma meds...
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    How do you describe "flu-like"

    speaking of the flu-like feeling- i have been having alot of it in the last 6 weeks. and lungs ache. saw dr- got antibiotics, took em. didnt help. still flu ish and lungs ache. saw dr again today- upping the amout of asthma med and he ordered a pulmonary funtion test. this fluish feeling sucks...
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    Might go to Dr. Klimas' office

    hi everyone, thanks for sharing all the info. ive had cfs for many many years now. and i live in florida! i would like to see dr klimas/dr rey. i called and they said i must have a referral from my primary care dr. so today i had to see that dr for yearly check up- regular bloodwork...
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    Bronchitis

    i also have chronic lung problems. not sure what the problem is. am sick of it! its not my regular asthma, and i was just on antibiotics for it and i still have it. lung xray was didn't show anything according to dr. at this point i will probably have to see a pulmonologist. i bet i will go thru...
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    I want to talk about one I havent spoken about before

    yes i have had very similar experiences. i am asleep dreaming - that i am asleep and i wake up and do whatever- start to get ready for the day, etc,,,,and it seems sooo real. but then later i acutally wake up and think -what's going on?! am very groggy and confused. then fall back asleep and...
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    Sinus improvement from daily Claritin

    oh yes- ive had frequest nose and sinus problems for years. what helps- singulair (rx pill) for allergies and asthma steroid nasal spray (rx) like nasonex or flonase etc OTC allergy med like Claratin the neti pot (i have the one by Neil Med) is a hassle to use, but does help when things get...
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    pompholyx / Dyshidrotic Eczema : Anyone else got this?

    hi i do have this or something similar. its little red dot/blisters that appear only on sides of my fingers. they dont bother me too much. i dont recall having them before cfs. now they do appear when my cfs is worse and i dont have them when i am doing better. very interesting. when was on...
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    What Types of Fatigue Do I Experience Poll

    i get all of these- on and off. but not often with the molassas one.
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    How do you describe "flu-like"

    hi i agree w what what the other posters wrote. i dont know whats wrong w those drs who act like they dont know what being sick w a cold or flu feels like. that's absurd. everyone know what cold or flu feels like. and no, dumbass drs, it does not just feel like being tired. w cfs i do get the...
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    Spiritual healer sham...

    Hi Spitty and everyone- my thoughts on this- that "spiritual healer" is a wack job. total BS. I believe that the majority of "spiritual healers" are full of crap. I always wonder how many of them believe their own crap vs how many actually know that it's BS. lots of blame the sick person/victim...
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    Are seizures related to ME?

    interesting that some of you mentioned seizues while sleeping. i get those. they are very strange, and i have never had them while awake. my head and neck start shaking, can feel it most in the chin. nothing else in body is shaking. it actually wakes me up. doesnt hurt or bother me- just so...
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    Dr. Neville, Woodland's Healing Research Center, PA

    excellent info. thanks for sharing it. i also saw dr neville (over phone) -did testing and treatment for adrenals. i do think it helped me some, but it is not the whole picture, or the main cause of cfs. it's one piece of a very big puzzle. bigmama2
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    Is brain fog more than mental dysfunction?

    hi i've had all different kinds of symptoms -- definately including the hungover feeling!!!! that is a classic one. then there is the really foggy/spaced out one. i dont like to drive while that is going on. then there was one when you are very very sleep deprived and you feel like you are in...
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    i am getting worse due to raising activity level-

    hi all- thanks for the replies. the up and down nature of cfs is hard to deal with. but this is still way better that when i was really sick almost all the time. thanks for the tip about 1 on 1 activities instead of in a group. it's so true (for me) that it takes much less energy to do...
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    i am getting worse due to raising activity level-

    hey everyone- long story short- i've had cfs many many years- it was a gradual onset- getting worse each year- mild cfs- turned to moderate then was very sick for a few years (sleeping/or lying in bed sick 15- 18 hrs a day), moderate/severe cfs then in the last few years i have...
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    NEWS: A Novel Diagnostic Approach For CFS- Hemispherx Biopharma & Chronix Biomedical

    thanks thanks for posting this. fingers crossed that this pans out. bigmama2
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    My neighbor said I'm rude

    hi c, i have put a note on my frony door- that says- resting- do not disturb. it was very helpful!
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    Another insomnia rant

    hi to all- insomnia sucks!!!!! mine was terrible for years and years. i tried so many things. nowadays i am lucky as it has improved alot- why? who knows? everynight i take ambien, xanax, spray on magnesium oil, and take a supplement with melatonin, theanine and 5htp (called tranquil sleep by...
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    Comment by 'bigmama2' in 'I am The Doctor'

    thats terrible! can you see another dr? there has to be someone better.
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    Dealing with lost career dreams and goals

    this thread hits home! i started getting abnormal exhaustion in highschool. still had it in college but things were better because classes started later in the day and i got breaks between classes. but after college- i was a high school spanish teacher- and that is a very demanding and stressful...
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    magnesium SPRAY instead of pills

    hi everyone- thanks for the replies! hmmm mag in pills, injections, cremes, sprays, and in epsom salt baths. such variety! so i am not the only one into non pill forms of mag! and Spit- too funny that you use the same kind spray i do- and you had the stinging too- interesting. i am sorry that...