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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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Blog entries by Seven7
WOW talking about life changing moments.
I have been on this drug for 3 days and I have not stopped, I mean I traveled today and one of the flights was a 4hr, went to work for a bit and I am still going.:lol:
I just sit and enjoy what normal feels like, I hope this drug will keep working...
I have a little more energy but more sleepy at the same time. I have wanted to die from the LDN pain! It was so rough and it took me emotionally to a place I have not been in a bit.
But at the same time, I have hope on this drug, Is like even though I am having all these side effects, I...
So I am up to 20min the twice a day I cheat sometimes. If I have to cook at night there is no way I can do the night session (I count the standing stirring pots as my session) or when I am juicing. NOT RECOMMENDED this is not right, I just don't have all the time to do it all so I am cheating...
I decided to update by topic, Too much to cover.
So I did not last on LDN 3mg. I got so sleepy and so much body pain that it was unsustainable. So I went back to 1.5mg and felt better. Then when stable started 1 pill and one quarter.
It was sooo hard to try to keep awake too at work. This...
So the week ended surprisingly well, Thursday was HARD but that night I up the dose to 2m of LDN and woke up Friday w a lot of energy, so I had a very good weekend, but like when I started I have developed An extraordinary amount of pain.
Last night I didn't sleep much, I got a new CPAP mask...
New Symptom: as I have angina pain (which is back) I am having kinda the same contraction pain in lungs. Is different and never felt it before, is like if I can't sustain the regular function of the lungs. I also have trachea pain, like somebody is sitting on my throat/upper chest. Breathing is...
I started ALC w ALA. I got a headache, like a high BP one. Also felt like pressure like in head, and felt very fluish all day. I forgot that ALA keeps me awake but this time it didn't. I will see how well I can tolerate and I will try to make it.
So there is hope for a life. I went to animal Kindom, FL, USA. Is a theme park, I rented a scooter (kind of a whole family adjustment) and I did OK from 9:30am - 2pm By the time we left the park I crashed for 3hours, but I was just tired, I didn't feel miserable or had other symptoms. I have...
I have been kinda of crashed but this one was different. I was not fluish (CFS) or Unable to move paralyzed (CFS) nor head buzz need to lay down or will die way (POTs). It was more like I am in so much pain that if I don't lay my neck down will die way. Is a new one to me, I am trying to figure...
Holly Crap!!!
I was doing so well, and I started LDN, first day at night I felt I had the flu, I slept great though :sleep: . It was ok and I went to work next day, it was rough but doable.
Second day, I had terrible pain in my breasts and Lymph nodes, fluish. Then I crashed so fast and...
I am having a good week. Somehow I gained a point ( I am now at 7 from 1 to 10). The biggest blessing is the brain is not as noisy. OMG it is so good to have the brain a little more calmed.:thumbsup:
I am surprised after all the traveling instead of been worse I feel better. There is...
I saw OI specialist, He prescribe the regular stuff, Compression socks 20-30mg,
Salt (6g/d adjust per patient as needed), Water (1lit?), Raise bed 20cm....:confused:
The difference was the training.o_O
Theory:
Dr told me that the brain is trained to shut off (you will pass out) when the...
So here is my summary. She told me to be patient and that I will get better. Patience HA!
OI: She asked me to do the florinef in half a pill at a time intead of all at once, I started inmidiately and it makes a big difference, she also told me to do an extra dose when I need to be standing...
So week's summary. I was doing so great but I crashed and burned Tuesday, So I had to miss work. The crashed send me to an emotional tailspin. I don't know how I manage to get so despaired when before I have gotten so much worse, I guess ones patience goes down over time.
I got better and was...
Soo I was doing Ok. Then I crashed yesterday. I am not sure is a CFS crash but I think is POTs, But hey who knows is not like I have a Doctor to go to that can help me, the CFS specialist is 2 plane and months away for appointment, My GP just nods sympathetic and say how frustrating for him not...
So today I feel better. I have a day like when I have a cold and CFS goes into remission, weird after the crash. I still have a cold but very mild.
I had neck pain but with the lotion (topical aspirin) was ok and manageable (ahh and 2 advils). I got POtsy (dizzy and was soooo close to pass...
I know is not funny and don't mean to offend anybody but who wakes up with so many symptoms you have to choose what to tackle so you don't destroy the poor organs you have left working properly?!?!!?
YOU got a winner! Today my cold / whatever virus/ Allergy, whatever combination kicking my...
So like I have been sick, I was not thinking about going out for trick or treat. Then as my kid was getting ready she said "mom I wish chronic fatigue doesn't exist" I just wanted to cry right there with the feeling of frustration, I try to hide it but she can tell now when I am sick.
I...
So I have been soooo sick since Friday, basically on crashed mode like when I started at the beginning of the year (my major crash).
I got a cold or something still haven't figure out, not sure if it was a CFS relapse or a bug and just made CFS worse. Is scary that u can be doing so well and...
So I am not around as much because I am doing so much more this days.
Exercise: I walk little here and there but not formal exercise yet.
Sleep: Was doing great but starting waking up like 3 times again, I am backing off benzos or because of the cpap mask leaking not sure the reason.
My...