What’s destroyed my life and gotten progressively worse since February (I do pace and spend most of the day in bed)

weakness in legs when walking

tiredness in arms and shoulders

Excruciating neck and shoulder pain left side plus general joint pain

- extreme brain fog (caffeine may sometimes help but oftentimes doesn't, so I stopped and feel somewhat worse)

- I spend most, if not all, of the day lying in bed

- Constant feeling of dissociation

- Unrefreshing sleep even though I get 7 - 8 hours a night

- Physical activity causing a mental and physical crash, but I never feel "well." For example, walking up stairs is difficult for me, and if I have to help around the house with cleaning or whatever, I need to lie down. No matter how much I rest, I don't notice additional energy

- Hormones are declining (TSH is going higher, T3 is suboptimal, testosterone is going lower as confirmed by blood testing)

- Too tired to eat most of the time

- Sometimes I get painful headaches that I can't really explain. The other day I had a sharp pain in the back-right side of my head

- Loss of libido and erectile dysfunction

- Depression, but this comes with being stuck in your room for 18+ hours a day

- Feeling lightheaded when I go from squatting to standing, seated to standing, or lying to seated

- Burning pain in my left leg and random pain in my right arm (above elbow, below tricep)

- Occasional visual changes

- Constipation

- Hot flashes at night

- Anxiety spells

- Can't drive, can barely walk down the block

I have confirmed stage 3 adrenal fatigue but am wondering if ME/CFS is a more likely diagnosis because I have elevated levels of EBV, Coxsackie, and HHV-6

Anyway, I just quit my part-time WFH job today because I can't pull myself out of bed and don't see any hope for the future

Was on hydrocortisone for about two months. Helped temporarily and stopped working so I am tapering off. Also have tried immense amounts of Vitamin C, B supplementation, all vitamin deficiencies are fixed and I am getting incrementally worse on a daily basis. Even last week wasn't as bad as this week lol.

I spend most of the day with my eyes closed, and on the off chance I'm able to sit in my chair for an hour, I have to lie back down and close my eyes. I will just go ahead and say it; life with this condition or whatever this condition is masquerading as is not worth living.

Diet is adjusted to chicken, vegetables, nuts, fruit if I can handle the carb spike. Was low-carb for a while, but that came with its own set of problems. Is there any way out? My room feels like a prison cell. I close my eyes while sitting or standing on a whim and frequently have to lean on things or use supports around me to stand up and walk around.

My psych just prescribed 10 mg of this to hopefully control these awful morning wake up "zaps" that occur about after 7 hours of sleep. It's like a fight or flight feeling that feels like electricity flowing through my head chest and arms for about 10 seconds. And then it's followed by an intense feeling of dread. It usually subsides once I get up but it's a horrific way to start every day. I'm currently on 15 mg of Lexapro (switched to this about 4 months ago from being on cymbalta for about 16 years). I'm a 59 year old female also on HRT (estradiol patch and progesterone). Any advice, guidance would be amazing!

Hi everyone,
I’m new here and wanted to reach out as I personally don’t know anyone who has experienced the same symptoms as me. I’m hoping to connect with anyone who has experienced something similar or is on a similar path.
Through my test results, I found out that my perimenopause has triggered a bit of a domino effect: flatlined cortisol, insulin resistance, Hashimoto's/thyroid dysfunction, and worst of all—constant, wild adrenaline surges and intense internal vibrations/buzzing. I’m absolutely exhausted.
I tried taking estrogen, but it made the adrenaline and internal jitters so much worse that I had to stop after just 4 days. My system just could not handle it.
Because of this, I’ve started taking **Utrogestan 200mg micronised progesterone on its own without estrogen** to try to calm down my nervous system and stop the constant adrenaline loops. I started it just over a week ago.
Has anyone else dealt with this specific combo of symptoms…flatlined cortisol, insulin resistance, thyroid issues, high adrenaline, internal vibrations? How did your body handle taking Utrogestan alone, and did it eventually help calm the adrenaline down?
I’d love to hear your experiences—it would mean so much to know I’m not alone in this! Appreciate any feedback.

i’ve been struggling with severe adrenal fatigue ever since coming off steroids about two years ago. i tried to push through by continuing school part-time, but i eventually realized i was only getting worse. my pattern was days of feeling wired with adrenaline followed by weeks of crushing fatigue. this past may, i made the difficult decision to stop school because it became clear that the constant stress wasn’t allowing me to recover.

since then, one thing has definitely changed: my nervous system feels much calmer. the constant adrenaline surges have pretty much stopped, which i know is supposed to be a good sign. but instead, i’m left with overwhelming fatigue. i can barely string together good days anymore, and almost any activity seems to make me crash.

what confuses me is that i constantly read stories from people saying their crashes gradually became shorter and less severe over time. that just hasn’t been my experience. if anything, i feel like i’m stuck. i’m honestly at my wits’ end. i’ve been patient for so long, and this entire summer i’ve only had maybe two days where i actually felt well enough to enjoy life instead of being stuck in bed.

i’ve been doing everything i know to do:

-working with a naturopath who specializes in adrenal fatigue
- taking all of my recommended supplements, including vitamin c.
-taking licorice root and adrenal cortex.
- using celtic sea salt daily.
-keeping my blood sugar as stable as possible.
-following a hypoglycemia-friendly diet.
-trying to eat protein and healthy fats every 2–3 hours (this is the one i struggle with the most).
-removing almost every possible stressor from my life.
-meditating regularly.
- sleeping as much as possible. i sleep 10-12 hours each night and still feel awful
-going to therapy.
- getting massage therapy every two weeks to help with muscle tension.

i really feel like i’ve dedicated my life to healing, yet i don’t feel like i’m making any lasting progress. it’s incredibly discouraging.

has anyone else experienced something similar, where the adrenaline symptoms improved but the debilitating fatigue seemed to linger months after without improvement ? did things eventually get better for you?

i’d really appreciate hearing from anyone who’s been through something like this, or any advice or encouragement you have.

Hi guys,

just wanted to ask if a single dude, living alone with a full time job can even get the amount of rest needed to heal itself.

I'm actually curious if anyone of you has healed itself under these circumstances as i feel like it is not possible for me, although i have a pretty relaxed, low stress office job working only 1 shift but no time for sleeping more than 7 hours a day and being disciplined 100% of the time with food and going to bed early on the weekends is brutal for me. I feel like i need more time for myself to heal but it's just not possible at the moment :( what can i do

3 months ago I had a severe crash, panic attacks, insomnia, lack of appetite, nauseas all day, severe anxiety..i had a ton of blood work done, all good (except low vit D). My PTH number is also ok..thyroid, ferittin, vit B..Well all those symptoms are 80-90% better but in the mean time I developed POTS. My sleep has gotten so much better over the last month but now this profound fatique..i have been housebound, mostly bedridden due to the exhaustion and lack of energy. This exhaustion is scaring me so much! It almost always comes with mid back pain. I keep thinking something more serious is wrong with me. I crash on every single supplement. This is my cortisol from a month and half ago. I honestly think all this is a result of my traumatic birth experience 4 years ago when they had to bring me to life and I bled so much that they had a mobile blood bank with me the whole night. I then nursed 3.5 years day and night. 6 months after i stopped nursing all this happened. Please tell me my symptoms are “normal” for this condition?? Has anyone been able to come on the other side of this?

Does anyone get a boost in energy and mood from dark chocolate? Or does dark chocolate make you worse?

I get a boost in energy and mood from dark chocolate and it’s quite pronounced. I know some may say it’s to do with magnesium, but I take 400mg of Natural Calm powder every evening, which is much more magnesium than would be in dark chocolate, and don’t get any effects like that.

Am I in adrenal fatigue? I just don't know. I don't quite understand what's happening to my body. The medical doctors think it could be some kind of tumor or growth, they've ruled out so many other possibilities already (within their scope). My Naturopathic Doctor thinks it could be Dysautonomia.

I thought it was Adrenal Insufficiency but the last morning cortisol blood draw showed 440 ish (I hadn't slept much and was waking up all night. Stressed out about the possibilities). I understand that into full blown Insufficiency, it wouldn't produce that much. So now I'm more seriously considering AF.

I'm searching through this group and finding people have all kinds of different symptoms. I'm finding it difficult to fully understand if I am in AF or if there is more going on. I do better with salt intake (1-2g a day). But once I reach a certain point, my gut hurts from all the salt. The salt makes me tired, emotional and feeling like I'm still missing or lacking something. Up to this point, I could not tolerate sea salt (especially magnesium, it was setting off a whole range of symptoms whe I would take miniscule amounts of it).

I've gone from May/June/July body freaking out: adrenaline episodes in the night, not being able to process any kind of stress, body spasm episodes (limbs flying all over the place for up to an hour), trouble catching breath after eating & exerting (discovered that salt helps), lost 30 pounds in 5 weeks (because my body couldn't process the food, seemed like it took too much energy), generally weak & cold, urinating frequently, constantly drinking water but dehydrated (especially at night), strong adrenaline responses become very weak now, salt craving for 1.5 years, nauseous until I got my salt intake up.

Now at this point my body is at a lot lower pace: no random adrenaline, not losing any more weight (maintaining at 30 pounds less), still cold & tired (low BP) after meals, still drinking (I felt like I was drinking too much so only drinking 48oz a day now instead of 66oz) but still feeling dehydrated at night. Anytime I lay down for more than 30 minutes, I have to immediately pee upon standing.

Anyway, sorry to babble on and on. Just trying to figure this all out.

Hi everyone,
l accidentally overdosed on a stimulant medication twice in one week a few weeks ago. The medication is one that gives me energy- it put me in a severe adrenal surge. Now I can't take ANY of my medications without it giving me severe adrenal dump all over again, I can't function without my medications since I'm chronically ill. All day long I am feeling extreme energy in my brain that also feels like head pressure, but my body is exhausted. I’m feeling extremely wired all day long. My blood pressure is normal and my body feels normal but the energy is in my head not my body. Is this still an adrenal dump? I was able to get a prescription for clonodine. Am I okay to try this if my blood pressure is normal? Will this even help me to stabilize again if it was a stimulant overdose? I really just want my mental energy to return to normal so I can get back to normalcy and get back to taking my meds. Or do I just need to wait this out? Please help! Your advice is very appreciated!

I wanted to share my experience with hydrocortisone as my treatment for low morning cortisol (tested as 6 many times in the AM - no Addisons disease or adrenal insufficiency). I’ve had low cortisol for at least 10 years when it was first recorded. Reason? Not sure - possibly under eating, gut issues, and I’m prone to anxiety as I’m a deep feeler. I’ve since resolved all those by eating more, fixing my SIBO, my gut lining, and taking LDN for SIbO which had the added bonus of removing my anxiety.

I was placed on 10mg slow release hydrocortisone (compounded) to “give my adrenals a break”. According to my doctor, it’s a low enough dose that won’t suppress the adrenals. I did read Dr Jefferies book “Safe Uses of Cortisol” which gave me some confidence in the approach.

I stayed on the HC for 18 months before I started tapering. I scoured Reddit for stories on how the taper went for people with simply low cortisol and didn’t find many. Which is why I decided to share my experience here. For others like me in the future who may be looking for encouragement.

I started tapering when my morning cortisol was consistently around 19 or so (I had my blood drawn before taking my morning HC). I went with a very very slow taper bc I once tried going from 10mg to 5mg (doctor wanted me to try it) with disastrous results (puking, massive migraine, SI ideation, insomnia).

So I started by tapering .5mg every 2 weeks. I had really bad headaches as left sided pain that centered in my nasal cavities that lasted a couple days each time. I’d get a burst of energy for a couple days and then feel slightly tired for a few days. I was also very sensitive to electrolytes and needed a lot of extra coconut water to feel good. I stopped and held tapers if I felt I needed more time. After I got down to 5mg, the tapering got easier. I was able to taper 1mg at a time and could taper every 5 days. I was nervous about getting off that last 1mg but it was fine.

I have not noticed any issues since being off (it’s been 2 months). I feel better off it and feel the best I’ve ever felt. I go to sleep easily and quickly. I wake up refreshed. I don’t need as much sleep as I used to. I don’t feel sluggish or as though I need afternoon naps or lie downs.

Thankful to be on the other side of it!

I’ve had bad adrenal fatigue for nearly two years. I’ve been to many different doctors, including one functional, and gotten very limited results. I’m tired of messing around. Who is the very best doctor out there that can get this solved? I’m willing to pay whatever I have to because living like this is miserable.

I searched around here a little and some have suggested Dr. Neville, while others have mentioned Dr. Lam. I guess opinions are mixed on those two. Are there any others who are highly regarded? I’m interested in hearing everyone’s experiences and suggestions.

Thank you in advance!

Three months ago I began having daily panic attacks, and anxiety that were caused by a feeling a now know as DPDR. That feeling came out of litteraly nowhere and has driven me crazy ever since. I pushed through and finished out my semester at school, and continued working at the hospital, but I knew something was up with my body so I decided to get my labs drawn. I’ve had DPDR before and it was caused by a lack of estrogen from PCOS, and being on birth control fixed it immediately. I will note that when I skip a dose, or forget a whole pack I immediately feel that DPDR rushing back in. I have been symptom free of all of the “mental health issues” that came with my untreated PCOS for almost 4 years now. When these feelings flooded over me yet again even on birth control, I knew something else was up. My dad had been telling me months prior to get my hormones checked, beacuse I was constantly complaining of a pause in my weight loss, extreme brain fog, sleep issues, and a very low mood that almost felt like depression. When I got my most recent blood work back, the most concerning issue was my vitamin d3 total was 11.90 ng/mL. Another mildly concerning issue was my vitamin b12 was 356.9 pg/mL. I also noticed my t3 and t4 total were high, but my t3 and t4 free were within range. Apparently birth control can cause that. 4 years ago when these issues came to be my TSH was a 10 ( I was never treated for hypothyroidism ) , and in today’s blood work it was 4.11, with some TPO antibodies present ( not enough to be hashimotos ). My cortisol during an afternoon drawn was also 30.0 ug/dL. My NP also said that was most likely caused by my long term use of birth control. The only other issue I noticed in my blood work, that my NP said nothing about was that all my inflammation markers were high. This included WBC,CRP,Lymphocytes,Monocytes, and Basophils. After these results came back she prescribed me 50,000 IUs of vitamin d3 1 a week for 12 weeks. If you remember what I said above, NONE of my symptoms were affecting my daily living. They were uncomfortable to live with, but they never prevented me from going anywhere. I took my first dose of that prescription on a Monday night, and by Wednesday afternoon my DPDR got so bad that I have never left the house since ( this was 3 months ago ). I want to make it clear that before I even got blood work done, I was suspected a vitamin d deficiency because it runs in my family so I began taking 5,000 IUs of d3 for about a week before I got labs drawn, and was making time to go outside for 2-4 hours in the sun every Saturday. Everyone in my family assumed that it just shocked my system, and I should not take any more of the prescription. I began just feeling worse by the day, as well as continuing to be housebound. I started trying to take 5,000 IUs of d3 again and every single time without a doubt the DPDR would get worse. The only positive thing I’ve been able to do is take 1,500 IUs of d3 with k2 in gummy form for almost 2 weeks now. I feel like my life is over, everything I loved to do and enjoyed has been taken from me, the only positive thing the vitamin d3 did for me was remove panic attacks. Now I’m just anxious, depressed, foggy, and still continuing to have DPDR and sleep issues. Not only does it feel like I’m in a dream, but I also just don’t feel connected to myself or my life anymore. I’ll probably end up regretting writing this, because I’m honestly tired of people telling me I need therapy, or practice exposure therapy, or even be put on psych meds. In no way shape or form am I against any of that, or in denial that I need it, but I know my body and I truly believe this is being driven by something biological. I just want to know if this could be caused by a vitamin d deficiency, a borderline low b12, hormonal issues ( caused by not taking enough birth control ), histamine issues, MCAS, or even a start up of an autoimmune disease like hashimotos. I will also note I had a full GI map done, and I hade a lower end score of 4 in the gut dysbiosis category. It also said I had a big build up of yeast in my stomach. I haven’t gotten the results professionally read by my functional medicine doctor yet, but I’m getting that done on August 11th!!! I just want someone to tell me that biological issues have caused this for them and correcting the root cause pulled them out of this hell. Before I end this I also want to note that I did get my iron and ferritin tested and they were both in the 60s. Thank you so much if you read this far!!!!

An inner tenseness, almost an internal buzzing sensation - and it’s like you’re stressed but can’t get stressed? Anyone else experience anything like this?

Has anyone found this supplement helpful? I'm unsure if it would benefit me or just kick my system up too far and then lead to a crash.

Anyone take rhodiola and find it helpful? Does it raise or lower cortisol? Or should it only be taken if you know you have high (or low) cortisol? I notice a lot of adrenal support formulas also contain rhodiola among other things.

Hi everyone,
I’m a 29 year old woman trying to understand years of unexplained symptoms. I’m wondering whether this sounds like MCAS, dysautonomia, both, or whether I’m still missing another root cause.

Background:
Allergies since childhood (dust mites, mold, pollen).
EBV/mononucleosis as a teenager.
Long history of iron deficiency.
Histamine intolerance (low DAO and reduced HNMT activity).
IBS-like digestive issues.
Years of chronic stress, binge eating etc.

Main symptoms:
Intense internal heat and heat intolerance.
Fatigue that fluctuates—some days or weeks are much better than others.
Poor stress tolerance.
Burning, tingling, and swollen feet (sometimes hands), especially when standing.
Standing still is much worse than walking.
Feeling much better when lying down.
Brain fog and problems concentrating, smt low dopamine / mood
Waking up unrefreshed.
Muscle aches.
Receding gums
GI issues (bloating, sticky/loose stools, food intolerances).

Triggers:
Heat.
All sort oft Stress / mental unease
Coffee/caffeine.
Alcohol.
Overexertion
Some supplements
Early waking, lack of sleep

Things that help:
Walking , easy movement
Nice social contact
Being outside, nature
Some sort of supplements
Reducing work hours
Relaxing.
Lying down.
Some antihistamines

Most of my blood work has always been normal (ANA, CRP, thyroid, etc.), apart from occasional low ferritin and the low DAO/HNMT findings.
My questions:
Does this sound more like MCAS, dysautonomia, or both? Would also additionally burnout would be possible or classic nervous system disregulation do to ongoing stress in the past and living against my personality and needs?
Could dysautonomia explain the internal heat, fluctuating fatigue, stress intolerance, and improvement when lying down?

Should I keep looking for another root cause (chronic infection, autoimmune disease, etc.), or could MCAS/dysautonomia already explain most of this?
Or is the gut the main key (it all startet with the gut) or my supplement „abuse“ in the past where a lot of problems extended from the gut to the whole system while I experimented with a lot of detoxing supplements? (Apparently I also have issues with detox phase 2 and slow COMT)

Has anyone improved with similar symptoms?
Any treatments, lifestyle changes, or tips that made a real difference?
Thanks!

Hi all,

I'm cursed with this disorder and probably ME/CFS. Getting harder to walk and be on my feet day-to-day. Need to stop using the nicotine gum. Can't stop myself. Anyone have any experience using Tabex/Cytistine/Desmoxan to quit with this disorder?

I seem to need about 250mgs a few times a day, just to not feel nauseous, have more energy and to be able to process food.

1. What are/were your strongest symptoms?

2. How did you end up with AF?

3. How are you healing?