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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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Seven (formerly lnester7)
- Author Seven7
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I have been on a good path the last few days. I went to GP and he increased my sleep meds to 300 to 400mg of trazadone. I tried 400mg and I only woke up once last night. I think I will stick to the 400mg.
I added back my Vit Powder the last 2 days too. That thing really works for me and the...
So I haven't blog in a while. I was trying to give the immunovir start up side effects some time to stop. And like the first time it got better 10days into it. I am more stable emotionally, decided not to blog in those 10 days because my emotions were allover the place.
I slowly have gotten...
So I increased to 3 pills of imunovir, I have been crying on and off all day, My emotions are all over the place. I remember the first time I started the drug and I know it will pass. So when I want to cry I just give in and in less than one minute I am done. It is weird to explain, then I feel...
So I have been working for 40h a week now, Week one did ok, week 2 in progress. So far I had 2 crashes. The first one was in a picnic, in the heat, ate ice cream and did everything I was not suppose to do. Only crashed for a few hours and rested on the weekend. Second crash was on Chinese food...
So I started working. It went well, I was able to sit all day without feeling miserable. I didn't have a high pressure day, it was very easy day back. My HR has been really normal too since I started Imunovir again 2 days ago.
I have more energy, and over all I can just do more. The burning in...
So I have been pushing my limits, I wanted to provoke a small crash, not a full on crash but one of those 4hours, I wanted to test my new limits, how much I can do before I get a crash.
I am happy to report that I have not have one!!! And I have push my limits a lot. I have been on the gym...
Today I found myself for the first in a long time dreaming of a future. I have always been a dreamer, planning the next big thing. I had great dreams before my last crash. I had been feeling so good that this thoughts were back.
I am wondering if this is it, that I will be able to lead a...
This is meant to be a reflection, I was thinking last night, that CFS has humbled me as a person.
I used to consider myself strong and independent. I got CFS and I did not handled it we AT ALL. I was so damn arrogant, and smart that I could solve it all.
I was let down by myself and...
I had the TTT today. I went no food or drink after 12am. It was very simple, the bed was like a table. I lay there while they conected the heart and vital signal stuff. I also got hooked up to an IV. The Electrophysiologyst was in and out while I was upright. The first part of the test (20min)...
Sooo I went to see electro, basically he told me to push thorough it and exercise for POTs, I am also getting a TTT but he said that he didn't expect anything different, besides that I have mild dysautonomia. My respect to those with severe one!!!!
He did give me Florinef to try. I started...
As some were worried about, I did crash with exercising. I have been kind of crashed for a few days but not too bad, just incapable of producing energy but other symptoms are tolerable. Having some mood swings but I think is the sleep med withdraw.
I quit the temazepan that I used to fall...
Sooo I was symptom free pretty much at rest so I decided to add exercise again :confused: . First day was Good, I did 20 min of easy stationary bike. I got little burning on spine and head, not too bad :thumbsup: .
Second day, I did 1h of easy bike. Got Really bad burning in spine and head, I...
I have more stamina overall, I have been doing more with family on weekends but I get this small crashes too.
I am wondering if I am really getting better, or if by just doing nothing, I don't feel bad as much. I am concerned about the progression of the disease and If I am going to get to my...
Sooo I have had great days! I am resting during the week and having close to normal life on weekends, I am running around and trying to participate more on family activities.
This vitamin powder is really doing the trick. Unfortunately now that I am seeing progress I have to stop the imunovir...
I had a big crisis again about 2 nights ago, the burning in head was so hard I was crying and ready to curse the day I was born. I prayed, haven't done that in a long time, I have not received relieve in such a long time that I don't bother to ask for mercy anymore. The feeling of desperation...
It has been some interesting days. Doing better in a way, I am finally feeling some progress. I was Banned from taking b12 from Dr because My levels were to high, So I kept away from the vitamin from fatigue to fantastic which is what I use to get out of relapse, the powder really works for me...
OMG! I had a sleep study with CPAP and I just had the best day in a long time!!! When I have these days I just get a glimpse of how life can be!!!
You know how I complain about head buzz? when I first got the CPAP machine on, I started to feel like my brain was a balloon and the buzz sensation...
I have been wanting to explain the general terms for the "normal" and newbies people.
Brain fog, we all experience it differently, but I will give you examples so you can identify it or understand you loved ones.
I have different levels of mental capacity depending how bad the brain fog is...
Update: I had the most wonderful day yesterday. I could go out with my family for a walk in the woods (I would lay down every 5 min) So I can definitely do a somewhat normal life if I follow the 5min on 5min off (rest) rule.
My family is adapting better. So it has made the whole difference...
Thank you all for the kind encouragement and for reading my blog. When you all let me know I am not the only one struggling with these things, it just makes CFS mentally more manageable overall.
Update: Brain fog keep increasing, I cannot even watch movies, I think is the walks. Minor crash...