confetti11
Senior Member
- Messages
- 279
Hello everyone,
I'm hoping something in my story will jump out to someone and I can figure out my latest setback.
I've had CFS for 17 years. With many years of ups and downs, since 2012, I've been doing okay. Working full-time, etc. Still had trouble with traveling, but went most days with minimal symptoms. Anytime I had setbacks during this time, I was able to pull myself out (with my doctor's help).
Since mid-late 2016, I've been sliding backwards. It seemed to bottom out in January after I had a simple cold (mild fever, congestion, etc. It was my first cold in years). Not sure if some immune system reaction triggered what I'm dealing with now/was the straw that broke camel's back.
My main symptom right now is just generally feeling unwell. I can feel nauseous suddenly and out of sorts-if you know what I mean by that. Sometimes a malaise. Affected greatly by heat. Have bad taste in mouth sometimes. Fatigue has not really been a factor. I just generally feel uneasy almost all the time. Oh, and generally emotionally defeated (I lost both parents in the last year, I'm single and had a stressful, demanding job).
One other thing that is peculiar and very bad right now: extreme hunger (sometimes with nausea). Sometimes accompanied by no appetite. This hunger is an extreme gnawing sensation that most likely mimics hunger from what I can tell. I don't think it happens really when I'm actually hungry. This was one of the first symptoms to start bothering me last October. But it was sporadic and seemed to happen only at night. Now it's every day. Sometimes all day. It can be really debilitating.
I see a good CFS doctor and take tons of supplements, get regular IVs, etc. I have for years. I do acupuncture, homeopathy, etc. We've tried the typical things to help this that have benefited in the past, but nothing so far has worked.
The doctor just gave me a very low dose of Selegiline to try (2.5 mg daily) to increase dopamine, in case a low level is making me feel defeated. I also tried CBD oil in the last few days.
Today, I woke up with even more nausea than usual. A different kind of nausea, and I'm crawling out of my skin I feel so uneasy. I'm not sure if the 1.25 mg Selegiline made me feel worse today, if CBD oil isn't for me, or if I'm just feeling bad regardless.
I'm looking again at methylation in my google searches today. I've worked on this in the past because of that gene issue. The nature of my symptoms feel like they are based in my neurotransmitters. I'm tempted to look more into the GI with a gastroenterologist, but something tells me that the hunger/nausea sensations are rooted in my brain balance and that they'd likely find nothing wrong with my stomach. This latest episode that started last year began after an extremely hard and exhausting week at work, exposure to a new home for work every day since then (off-gas?), and my dad dying after my mom died less than a year earlier.
Does anyone see clues I'm missing? Especially in terms of neurotransmitters?
Thanks!
I'm hoping something in my story will jump out to someone and I can figure out my latest setback.
I've had CFS for 17 years. With many years of ups and downs, since 2012, I've been doing okay. Working full-time, etc. Still had trouble with traveling, but went most days with minimal symptoms. Anytime I had setbacks during this time, I was able to pull myself out (with my doctor's help).
Since mid-late 2016, I've been sliding backwards. It seemed to bottom out in January after I had a simple cold (mild fever, congestion, etc. It was my first cold in years). Not sure if some immune system reaction triggered what I'm dealing with now/was the straw that broke camel's back.
My main symptom right now is just generally feeling unwell. I can feel nauseous suddenly and out of sorts-if you know what I mean by that. Sometimes a malaise. Affected greatly by heat. Have bad taste in mouth sometimes. Fatigue has not really been a factor. I just generally feel uneasy almost all the time. Oh, and generally emotionally defeated (I lost both parents in the last year, I'm single and had a stressful, demanding job).
One other thing that is peculiar and very bad right now: extreme hunger (sometimes with nausea). Sometimes accompanied by no appetite. This hunger is an extreme gnawing sensation that most likely mimics hunger from what I can tell. I don't think it happens really when I'm actually hungry. This was one of the first symptoms to start bothering me last October. But it was sporadic and seemed to happen only at night. Now it's every day. Sometimes all day. It can be really debilitating.
I see a good CFS doctor and take tons of supplements, get regular IVs, etc. I have for years. I do acupuncture, homeopathy, etc. We've tried the typical things to help this that have benefited in the past, but nothing so far has worked.
The doctor just gave me a very low dose of Selegiline to try (2.5 mg daily) to increase dopamine, in case a low level is making me feel defeated. I also tried CBD oil in the last few days.
Today, I woke up with even more nausea than usual. A different kind of nausea, and I'm crawling out of my skin I feel so uneasy. I'm not sure if the 1.25 mg Selegiline made me feel worse today, if CBD oil isn't for me, or if I'm just feeling bad regardless.
I'm looking again at methylation in my google searches today. I've worked on this in the past because of that gene issue. The nature of my symptoms feel like they are based in my neurotransmitters. I'm tempted to look more into the GI with a gastroenterologist, but something tells me that the hunger/nausea sensations are rooted in my brain balance and that they'd likely find nothing wrong with my stomach. This latest episode that started last year began after an extremely hard and exhausting week at work, exposure to a new home for work every day since then (off-gas?), and my dad dying after my mom died less than a year earlier.
Does anyone see clues I'm missing? Especially in terms of neurotransmitters?
Thanks!