Inspired to find what my problem is and need guidance. I've felt like death my entire life, the rare times I didn't tell me this isn't normal.

[Wilderbessy]

Piggybacking off https://www.mechanicalbasis.org/ + https://forums.phoenixrising.me/thr...cci-as-a-cause-of-your-cfs.56908/#post-945253 , a story of a man that suffered CFS alongside POTS...I'm inspired to sort out my body, especially when I'm still young (26) or else it's going to shoot me in the back. I am not saying I have CCI or ME...I've only suffered a very slight decline over the years...but, it really did fit into the general malfunction that defines my body.

ANYWAAAY...

I'm back here after just dealing with my fatigue and much more bizarre issues for a few years; I'm 26. It's not the worst story, but a story of me who...starting from when I was just a tiny girl had the black, sunken circles of the Grim Reaper--standing besides my family, I was the sole person with this issue, alongside with a droopy, ill-looking pallor...everyone else looked very much alive. What are even genes? Then again I have pointy elf ears too so maybe I'm just a mutant. I was always just weird. I got sick constantly.

Unlike the rest of my family I developed extremely severe speech delay, only learning to speak, and awfully at that, when I was 13--I was often tired and lethargic. I walked with a hunchback. Developed weird things like Kawasaki's, etc. Probably unrelated but, y'know, I find it kind of bizarre that apparently there's new evidence that it can be associated with getting viruses.

Despite having the same lifestyle as anyone else, family or peers, I perpetually wrote it off to Being A Normal Person. I told myself this for years. Even when my jaw started screaming in pain for a few years.

Welp. I actually had several issues that I didn't know of, like asthma that struck scarily sometime, severe dental issues and needing orthognatic surgery (haven't yet), being incapable of breathing through my nose, etc. I found this out about 2 years ago......but I was never taken to the dentist or doctor as a kid. I also had severe allergies, which were diagnosed at an allergist, to basically almost everything.

However, that doesn't explain everything.

-The fatigue is often sickly; my ligaments/limbs often feel weird, sore, with spikes of pain but somehow numb. My eyes often are in complete pain and sometimes become red, my head usually feels like the heaviest part of me
-Sometimes gets worse in a complete wave where a lot of symptoms get worse at the same time
-Bizarre senses of nausea and dizziness wash over me; I can barely get in a car without getting violently ill
-I've had severe acid reflex and digestive issues from when I was a little girl
-Sleep is never refreshing; in fact sometimes I wake up completely incapable of breathing and this started in my early teens when I didn't at all have anxiety nor knew I had any problems, it was terrifying. I also wake up with bad neck pain and I can't figure out how to sleep
-speaking of which I get pretty consistent neck and back soreness; my posture is bad but I have no idea what to do besides simple exercises like chin tucks. I also get bad TMJ, presumably from my several bite issues
-I have in the past gotten dizzy and almost past out completely randomly even when it wasn't from excercise besides basic stuff like walking; darkness clouded my eyes and I barely remained conscious...again this was before I realized that maybe something was genuinely wrong with me, about 3 years ago.

Peeling back what catalyzed my suspicions was an event.

So then I had a, erm. Weird Day. It was my birthday a few years ago; I ended up talking to this friend all night over the phone. I ended up laying out in the dorm yard on a gravity chair for 3-4 hours under the stars which I had never done before--it was a weird new posture. Despite staying up, which is usually impossible to me, for once I felt ok. This was probably also my longest day ever taling to anyone I remember going back indoors and sleeping at 7AM.

And then I woke up feeling like I had woken up from a 23 year long nightmare; even the sheets felt different because I for once didn't feel numbed pain. I FLEW out of bed like never before. Immediately when my dormmates saw me downstairs, even if I wasn't emoting, they flipped their shit and started spazzing out about how different I look and how I didn't look like death. I mean, my facial fatigue and pain was gone too.

Look. I took a picture of myself in a few parts of lighting for later reference, and realize they were completely, objectively right. The black dark circles around my eyes, since I was a kid, were for once completely gone, and the sunkeness faded away. None of my other pictures ever had this.

I remember talking infinitely better to the point where my speech impediment was completely and utterly gone; I freely joked and was far more eloquent and thinking of stuff on the fly as the brain fog was all gone. I was able to run and feel alright for once too without increasingly blacking out.

And then...despite feeling amazing the whole day, I went back to sleep, and I woke up again feeling like shit. What??

Honestly that scared me as I finally knew something was up, that I wasn't tripping at all and I had basically told myself hit was normal...and at that point I stopped being "forever fat" since I was a baby...I was working out, a healthy weight...and should have "felt better" with the better food I was eating...but I wasn't.

As noted earlier this is why I finally started seeing doctors.

Recently I finally asked my doctor last year about why I was incapable of breathing through my nose and, welp, turned out that it was DEFORMED!! Insurance paid for my surgery, and while it made me feel a bit better and no longer mouth breathed, it didn't really fix much... but it was still an indication, besides the asthma diagnosis, that I wasn't totally imagining things. I've tried living a more healthy lifestyle though my condition is fairly consistent, as it always has been.

Honestly I'm still functional to a degree. I'm often woozy and out of it and struggle with thinking well, but I can still go do stuff. I can still kind of function even though life is mostly this fevere haze/dream....however, how I feel is very much I'd describe as very much an existential "3-4/10" and I can now confirm that it really does interfere with my life. I *get by*, I just can't really live life or really talk to people and I realize that this isn't normal.

 

[Wilderbessy]

Going to probably leave this up as a thread to return to...afraid no one will respond with ideas, but I will compile some more notes.

-it would be difficult for me to seek further treatment as my insurance is questionable
-I did a very stupid oopsie; a while ago I was actually referred to a sleep apnea study after a series of tests but it was on a school night...the center was 2 hours away, while school was 4 hours away from that center and it was final exam day...I ended up skipping the apnea test because I knew I couldn't handle both, but I ended up failing school anyway

So, let me get to what I'm looking for

----> ideas on what to look into, and what I can ASAP to help myself. I'm looking for solutions and ways of testing what my issues could be
---> my primary issues seem to be stuff like: circulation, posture, breathing, bad sleeps, fatigue
--> less relevant but still effecting: gut health (IBS constipation issues+acid reflex entire life), allergies, inability to relax

-in the past I've noticed some things helped (like NAC) but I can conclusively say it's marginal, except maybe for Bronkaid which is an asthma med that kind of makes me feel a bit more alive though I doubt it actually affects my core issues.

 

[Wishful]

People with ME do get occasional temporary remissions, which sounds very similar to what you experienced. You might wake up feeling totally healthy and energetic, and feel excited that whatever the nightmare was has passed...and then later that day or the next day, you're back to the nightmare. It's like flipping a switch. Even if you don't have ME, you might have whatever mechanism is responsible for this switching of state.

Do you meet the Canadian or International criteria for ME?

 

[Judee]

Have you tried sleeping in a gravity chair again? That might be a clue on why you felt good for a day.

 

[Wolfcub]

Hi @Wilderbessy .
I don't think I can be of much practical help to you, as there is so much I don 't know about this, about treatments, etc.
I am still trying to figure out what's going on with me, and how to manage it, but I am only two plus years into this, from feeling totally normal most of my previous life, and being highly fit and active.

But something you said made me sit up and listen.

You said that when you stayed up the whole night and caught a little sleep at 7am, you felt a relief from symptoms the next day!

I have, quite a few times, felt exactly the same thing. But there is no way I can "hack" this to feel better as it will happen only once, and any more sleep deprivation doesn't help at all.
I remember nearly 2 years ago when I was feeling quite bad, I went completely without sleep one night....and the next day my appetite came back, I could eat well, digestion/gut was fine and dandy, no weird pains, no flu-like feelings, no nausea, no over-reaction to caffeine or alcohol, no inner vibration sensations, and yes, I was tired, but that sick-y shaky exhaustion wasn't there at all.
I basically had a lovely day and ate three square meals and enjoyed everything.
I recall I wasn't too bad the next day either, after 10-11 hours of sleep.

But as soon as my regular patterns and routines came back, the symptoms returned.

I had a similar effect (though not as strong) after basic recovery from Covid too. That effect lasted about 3 weeks or so. I actually thought Covid had cured my ME/CFS! (Sadly not so, as I started with an IBS-like thing a week or two later, which I'd only had very briefly in the past -at the start of my illness in spring 2018, but which had passed at that time and not returned.)

So it makes me wonder why sometimes, serious sleep deprivation has helped me. It's interesting to hear that has happened to someone else.

Also, another thing interests me. Does your asthma medication contain a steroid?

 

[Wilderbessy]

People with ME do get occasional temporary remissions, which sounds very similar to what you experienced. You might wake up feeling totally healthy and energetic, and feel excited that whatever the nightmare was has passed...and then later that day or the next day, you're back to the nightmare. It's like flipping a switch. Even if you don't have ME, you might have whatever mechanism is responsible for this switching of state.

Do you meet the Canadian or International criteria for ME?

Oof. Wasn't sure what you meant then found https://me-pedia.org/wiki/International_Consensus_Criteria, and I confidently (which is actually rare, even for "catch all" conditions) say I do fit almost all of the criteria and that on my few good times I don't at all.
Alongside the other ones which are more general, I think the respiracy issues and these:

• Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion
• Susceptibility to viral infections with prolonged recovery periods
• Gastro-intestinal tract
• Genitourinary
• Sensitivities to food, medications, odors or chemicals,

which I didn't fully go into, but also mostly have. Flu-like symptoms, yes. I think it's immediately obvious when I wake up in the morning on particularly bad days as well. I have GI issues (I have had near constant constipation since I was about 9 and heartburn/acid reflex--I was tested and it was found there's damage inside), and I seem to have some sensitivities too...food still puzzles me as most seems to just make me feel sorta bad, but there's many make up products that I can't wear as they worsen my asthma+block up my nose and burn my eyes. Sometimes there's perfumes that almost make me want to faint, but they're rare (for some reason a perfumed trashbag make me suddenly incredibly dizzy with a horrible headache and nearly blackout). I do have an incredibly specific abnormal Genitourinary issue as well and do have a lot of infections (despite being a virgin and very hygenic so it's not STDs) but...let's just say it's so embarrassing and I'm confused why it even happens. Not sure about the viral infection thing. I've been put on antibiotics sometime...the only major disease I had was Kawasaki's and the connection to viruses is dubious.

The post exertional malaise thing can be kind of consistent. I.e., ever since I was a little girl a half hour trip to the store would wreck me and make me feel ill for the rest of the day...but I can confirm that it wasn't at all a problem in the few notable (4; 3 of them were a weird string of days that I can't really understand, isn't like I was in a good mood) good days I've had. I just felt great, and all of the above just...didn't happen.

Also sorry for writing out so much. I just think maybe I should just get everything out of the way if brought up.

 

[Wilderbessy]

Have you tried sleeping in a gravity chair again? That might be a clue on why you felt good for a day.

Unfortunately no; it was back at my dorm. All I know is that it was on a slight incline, that I was slightly lying down and looked bizarre and not like the gravity chairs on google; I think it was suspended though not a hammock. Wish I remembered.

 

[Wilderbessy]

Hi @Wilderbessy .
I don't think I can be of much practical help to you, as there is so much I don 't know about this, about treatments, etc.
I am still trying to figure out what's going on with me, and how to manage it, but I am only two plus years into this, from feeling totally normal most of my previous life, and being highly fit and active.

But something you said made me sit up and listen.

You said that when you stayed up the whole night and caught a little sleep at 7am, you felt a relief from symptoms the next day!

I have, quite a few times, felt exactly the same thing. But there is no way I can "hack" this to feel better as it will happen only once, and any more sleep deprivation doesn't help at all.
I remember nearly 2 years ago when I was feeling quite bad, I went completely without sleep one night....and the next day my appetite came back, I could eat well, digestion/gut was fine and dandy, no weird pains, no flu-like feelings, no nausea, no over-reaction to caffeine or alcohol, no inner vibration sensations, and yes, I was tired, but that sick-y shaky exhaustion wasn't there at all.
I basically had a lovely day and ate three square meals and enjoyed everything.
I recall I wasn't too bad the next day either, after 10-11 hours of sleep.

But as soon as my regular patterns and routines came back, the symptoms returned.

I had a similar effect (though not as strong) after basic recovery from Covid too. That effect lasted about 3 weeks or so. I actually thought Covid had cured my ME/CFS! (Sadly not so, as I started with an IBS-like thing a week or two later, which I'd only had very briefly in the past -at the start of my illness in spring 2018, but which had passed at that time and not returned.)

So it makes me wonder why sometimes, serious sleep deprivation has helped me. It's interesting to hear that has happened to someone else.

Also, another thing interests me. Does your asthma medication contain a steroid?

Kind of reminds me of the concept of eustress...not quite it, but effectively a shock or abnormal experience that ends up realligning our bodies...it's all so frustrating that we can't really quite pin what it is down. Maybe sometime I'll consider sleeping on the ground...just doing something stupid like that.
Honestly seems like our bodies need some way of revving into action--considering that the response yours had to COVID followed a similar trend.

Oh, speaking of IBS, stupidly on the 2/3 other days I actually felt consistently great, my digestion was just...weird. I don't really wanna go into it, but it was weird, my belly made weird noises and I actually could feel it working in a way that it didn't before, etc.

Anyway cutting to the business...my asthma med is a naughty one but isn't a steroid, and has Ephedrine and Guaifenesin in it. Honestly my inhalers and singulair never had such an effect...and I begin to realize that just the function of the emphedrine is basically being a nervous system stimulant which probably explains the effect. It's both cool and frustrating that honestly there's usually a 10, 30% improvement in how I feel after taking it as I really don't want to rely on it...and also as said it's probably just a phantom sense of feeling more alive.

 

[Rebeccare]

I'm sorry your health has been so difficult @Wilderbessy ! I'm glad that you've found your way back here! If you read through the forums, you'll find a lot of people with symptoms similar to yours.

Were you ever able to schedule another apnea test? Although it sounds like you have plenty of health issues that are unrelated to apnea, if you do have apnea then it may be contributing to the fatigue you're experiencing.

As for your experience with the gravity chair, I wonder if sitting like that helped get more blood to your head. A lot of people here have orthostatic intolerance, which means that when they're upright its hard for blood to get their brains the way it should. Often when I stand up I almost pass out again--my vision fills with sparkles and fades to black for a few seconds before coming back. There are simple non-invasive tests that can help identify this condition--have you ever had a tilt-table test?

 

[Wishful]

I've been put on antibiotics sometime...the only major disease I had was Kawasaki's and the connection to viruses is dubious.

Antibiotics treat bacterial infections, not viral, so you shouldn't notice an effect. I had different types of antibiotics during my ME, and none affected my ME.

The sensitivity to viral infections is inconsistent for ME: some people are more sensitive, and some people are less. I think I've had only 2 or 3 viral infections since developing ME in 2001, and they only lasted a day or two. I don't recall any mention of abnormal sensitivity to bacterial infections, but I suspect they're possible.

 

[Treeman]

Hi, my health problems started at 6, I'm 55 later this year. try to find a Dr. / GP near you who acknowledges ME/CFS and speak with them and tell them you think you have ME/CFS. I had acid reflux and have IBS. I kept a food diary and started to exclude certain foods. Acid reflux has now gone and IBS at a manageable level. Bread is a no no for me as one example. You've a lot to go through, do it slowly a little at a time.

I still feel like I'm living in a dream.

 

[Wilderbessy]

I'm sorry your health has been so difficult @Wilderbessy ! I'm glad that you've found your way back here! If you read through the forums, you'll find a lot of people with symptoms similar to yours.

Were you ever able to schedule another apnea test? Although it sounds like you have plenty of health issues that are unrelated to apnea, if you do have apnea then it may be contributing to the fatigue you're experiencing.

As for your experience with the gravity chair, I wonder if sitting like that helped get more blood to your head. A lot of people here have orthostatic intolerance, which means that when they're upright its hard for blood to get their brains the way it should. Often when I stand up I almost pass out again--my vision fills with sparkles and fades to black for a few seconds before coming back. There are simple non-invasive tests that can help identify this condition--have you ever had a tilt-table test?

Well, unfortunately I'll have to verify that I successfully rekindled my insurance; I was told that a new card was sent but it hasn't gotten here after 2 weeks sooo it's up in the air. After that I'd have to go through the gauntlet of tests and seeing doctors and referrals again which is a bit of a bummer but I'll start the process again when I can--this time around I'm a bit leery that they'll let me go through the process again, though I'll see.

The gravity chair might have helped, though my head was raised just a tiny bit. I've been on an inversion chair for a bit and honestly afterwards I felt very, very weird and woozy. I'm not sure what a tilt table test is but I'm sure I've never had one (I'll look it up).

 

[Rebeccare]

I'm not sure what a tilt table test is but I'm sure I've never had one (I'll look it up).

It's a test where you start off lying down, and then the table you're lying down on tilts so that you're upright. The whole time your vitals are monitored so they can see a drop in blood pressure or any changes in your other vitals. From what you're telling me about your experience on an inversion chair, it sounds like you might respond similarly to the tilt table test!

There is another version of this where you lie down for 10 minutes with all of your vitals carefully monitored, and then you stand up for 30 minutes, or as long as you can tolerate. But this requires careful supervision in case you do faint--there needs to be somebody close by to catch you!

 

[wigglethemouse]

There is another version of this where you lie down for 10 minutes with all of your vitals carefully monitored, and then you stand up for 30 minutes, or as long as you can tolerate. But this requires careful supervision in case you do faint--there needs to be somebody close by to catch you!

There are instructions for self testing for orthostatic intolerance using the NASA lean test here. The same test can be used in a doctors office
https://batemanhornecenter.org/nasa-10-minute-lean-test-2/

 

[SickOfSickness]

I would suggest reading my "basics" thread which has a lot in it. Now I think so much has a digestive/food allergy underlying cause, especially for people who have been sick since childhood.

I would also recommend a good colostrum for allergies, immune system, etc and l-lysine to help with some of the flu/infection and fatigue.

 

[JES]

The symptoms you describe do sound a lot like CCI, EDS or some other structural issue, I recommend you contact @JenB . With OI and POTS you also feel worse when standing, but it's due to general autonomic dysfunction, less about specific postures causing issues. It seems that your issues are a bit more specific than just feeling sick and tired like most of us with ME/CFS, so here's hoping you have something that could be treated.

 

[SickOfSickness]

I was also sick from a young age. And fixing digestive issues helped to fix my jaw pain.

I would also suggest you get a 23andme genetic test (or maybe a better one through a doctor) and look at your methylation and detox SNPs.

 

[Judee]

Unfortunately no; it was back at my dorm. All I know is that it was on a slight incline, that I was slightly lying down and looked bizarre and not like the gravity chairs on google; I think it was suspended though not a hammock. Wish I remembered.

I've seen the traditional gravity chairs. When you said it might have looked like a hammock. I searched with that term and found this: https://www.sharperimage.com/si/view/product/The+Zero+Gravity+Hammock+Chair/201444

Also if your head was slightly raised you could try a wedge like this one under your mattress. Some people with POTS and orthostatic intolerance get a little relief by sleeping with the head elevated or so I've read. It did not help me but my mom uses one by Avana on her bed to help with breathing for her COPD.

Note that they do off gas quite a bit for a few weeks if you have MCS (multiple chemical sensitivities) like we do.

 

[SickOfSickness]

I also had neck pain, dizziness, numbness in limbs, unrefreshing sleep, inability to relax, etc. Not saying you have the same cause(s) as me. I highly recommend trying probiotics and supplements for the inability to relax and to improve sleep.

 

[Wilderbessy]

Alright, gonna do a small-ish update--I'll respond to others when I think I have more information.
In general I realize that I think my issues might not necessarily pool from one secret big issue per se. I have huge suspicions about the nausea and near fainting moments, however, and this being pretty consistent with most of my symptoms so if I fix that I believe maybe I'll feel better in general.

So, good news--possible success?: starting doing early morning stretches and yoga with an emphasis on posture which I'll go into later. This has a far, far more better effect than me than walking around or regular exercise. I had a 5.5/10 feeling day today which is actually pretty good for me (great day for reference is a 10, average me is about a 4). I also have been feeling less back pain, though I still haven't at all resolved my burning neck pain.

Another really bizarre thing that I can't really explain is that my permanent painful dry eyes has gone away...for a few days my eyes were aching more than usual and red, but for some reason afterwards my eyes felt actually nice and wet and normal colored. My body is really stupid and I don't understand it anyway, though still a cool random development!!

Anyway about stuff I'm doing or plan to do...

I'm in the process of finding a chair that's good for my posture (seems silly but my only chair has no support at all and it's making my body feel worse)

fast for 2 days a week which...honestly is hard to do but I have to. This will lend itself easily to me eating a limited diet to see if anything affects me negatively afterwards too which I will keep a journal to track. I want to almost completely cut out all low nutrient foods too. I also want to eat within a 6 hour window and restrict my calories a little bit.

Undergoing the normal doctor route...I finally mailed in my insurance choice and I should be able to go soon!! I hope I get the doctor I chose (who is noted to be very accepting). It's been over a year. I want to check about my deficiencies and also if my cholesterol level went down (yeah I didn't mention it but it was tested to be very high when I was 24 which was...creepy...considering I was like, 140 pounds then. Anyway as for specifics...

--> I will check out my tortured sleep and do the sleep apnea test I never attended
--> I will - with a huge dose of luck - try getting the doctor to refer me to a chiropractor as I have such horrible posture issues and I do believe a huge part of it
-->get proper allergy tests, honestly the way I react to certain things is a bit crazy and it'd be nice if I can literally factor out what I'm intaking...as of now to me it just seems like combos of stuff set me off more than anything else...and the patterns are nonsensical. I feel like something is going on tho because if I don't eat anything I at least don't have a huge attack of my issues usually which is quite odd

Improving my posture and strength via special exercises, and working out regularly. I'm also working on restoring my normal breathing as I'm used to breathing very shallowy, and I want to learn how to breathe deeper and slower. I personally am probably gonna look up one of the people I was recommended but at the moment I've been viewing bodyweightwarrior's videos on mobility (think that's his name). I also want to do a nighttime routine as I want to see how it affects my sleep.

I also started taking Jarrow's Saccharomyces Boulardii this week which I think might be treating me well stomach wise; at first I had my doubts because a weird red eye thing was happening which was unusual and I'm not sure what it was caused by, I doubt it was the pill...but seems like the probiotic helps my GI tract. Heartburn levels seem down too.

conclusion of the day: I'm quite suspicious of the way my body gets worse in a sort of consistent cycle, and I'm interested to see what happens when I break that cycle. For some reason for example when I do my posture and yoga routine midday it doesn't seem to make me feel better whatsoever for the rest of the day but early morning so far it has consistently seem to pan out to better feeling days without devolving too much into a sickly stupor that I usually do as I get tireder and tireder. Maybe the early morning makes my body work more efficiently so whatever causes my energy to die out is less likely to happen.
I think a keynote of this is how on my great day I felt consistently amazing. While of course I can get worse in a wave, it always happens when I already felt ill, and not really when I'm feeling relatively well.

Edit: also I might contact JenB after I've been doing my posture exercises for a bit. Don't want to get too ahead of myself!