BangBangBang

BangBangBang

INFP
Nov 16, 2018
76
Yep. I'm a frail individual as well. So you're not alone in that, friend. My whole life has been filled with one disease after another. But I've had weird symptoms for 3 years now. Chronic air hunger, overheating, skin is always hot I feel like a furnace but my temp is OK even slightly lower than normal. I always wake up so hot one could argue that I have a chronic flu or something. Blocked nose most of the time. Terrible fatigue and ocassional nausea that last daays I get tired really easily and when I do the most basic things I'm soaking wet. I've been to many doctors with this and not even one took me SERIOUSLY. What I learned by that is... Most of the doctors out there do not care, don't have enough empathy instead of diagnosing you they suggest treating symptoms not the actual cause.

I've had a fun experience with a doctor not that long ago... I visited him with a CT scan of my lungs as I have lung scarring from HL I had when I was younger. I told him about the chronic air hunger that I've had for some months now that it's a first and it never happened before and that it's severally affecting my quality of life i can't breathe normally etc etc and instead of doing more test to diagnose me he just said: "well you've had cancer and your lungs got scarred in the process, I GUESS YOU WILL HAVE TO. LEARN TO. LIVE WITH THAT AIR HUNGER"

But I just told you that I can't you f*cking asshole.


So yeah... If you're sick you're lucky if it's something easy to diagnose or you find a doctor that actually listens.
 
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Arvinneedstodie

Arvinneedstodie

Existing is not living
Sep 17, 2018
198
Yeah, GI issues, sounds like severe IBS or mild IBD w/ vomiting malnutrition and underweight (share some symptoms with k75 but mostly milder)

Appointments for specialists are 2 months wait , and so are US , CT , etc , and each test requires new blood/urine test. Specialists in particular don't care much, don't write full symptom list, and don't recall it.

Docs didn't even give me basic medication to ease symptoms. For 3 years I've been hearing "let's wait for test results". I gave up and told them which Rx to prescribe. Shows what careless idiots they are. My GP knows me and I'm prescribing myself whatever is needed (inc SSRI, NDRI, etc). It's unbelievable...

I feel total disrespect for doctors, no contempt or resentment, but I consider common garden slugs more helpful.

I'm sorry you're going through this as well. The "lets wait for test result..." thing is exactly gets me. I have done so many tests for my GI problems i don't know what else to do now. Am i just going to keep suffering like this? What's your plan forward if you don't mind me asking?
i have fatigue, stomach and genital area problems, idk if there is others, i can't go to doctors so i'm freaking out about it if i have something serious
Why can't you go to the doctors?
I'm a little older than you... 28. I've known something was wrong with me since I was a teenager. I have had anxiety and depression my whole life but my physical health is complex. I've been fobbed off, misdiagnosed and even lied to about something that majorly impacted my life my a GP.
My blood work is haywire yet it seems the doctors can't be bothered investigating because my health issues whatever they are are so complex. I've yet to meet a compassionate doctor. I was just in the middle of further tests when all this covid lark started, so now all those tests are down the shitter.
Im struggling to ctb because I'm angry how I've been treated and I can't let go of that anger. I even paid for several private blood tests because the doctors weren't helping and I've made it simpler for them as they have all the bloods I've done off my own back as well as the ones they've actually done. It looks like I have a pituitary issue(tumor or abnormality) or Addison's disease, thyroid disease, I should be on treatment for but have been medically neglected.
And now theres no chance I will get sorted because even when this covid has blown over people will still be crying about it because they have a cold so the systems overflowing. And those people shout louder than me because I try to get on with it. That was my problem I didn't want to cause hassle so didn't keep pestering until they sorted me out. Now they have left me bitter, miserable, hateful. Which was never me.
Fuck this society, existence in general. It's an evil game. Hardly anyone has empathy and my years of being a nice person caused me nothing but more suffering.
Good luck to you.
I am so sorry you are going through exactly what i am going through. Forgive me for saying this, but i find a little bit of comfort in knowing that i am not alone in this exhausting fight. I'm not sure about what's exactly bothering you, but from you mentioning thyroid problems and pituitary issues, i think i am facing some very similar problems. All my symptoms can be caused by either an thyroid problem, pituitary issue, both or more. Autoimmune problems can also cause some of my symptoms as well. Whatever it is that we're facing, they are clearly too complex for most doctors to figure out. I have seen 5 or 6 different doctors/ specialists last year trying to figure things out, and each one of them show me nothing but annoyance that i am disappointing them as a patient because i am not easy to diagnose. I became so hopeless and mad that i became dysfunctional and had to walk away from my job. Then this year i decided to try again, and right when i was going to try another doctor the covid 19 hit. Now everything's shutdown or pushed back months. Like you said, i don't think the system will be back up running normal for a long time even after covid passes. Maybe this is the sign to finally give up. I want to live. I really do, but not like miserably like this. What are we to do now? Of course society doesn't give a crap about me, u, or anyone in particular, but what can we do on our end now? Do you honestly think doctors can eventually find out what's wrong with us, and even start to heal us? At this point, i just want a diagnosis and then ctb. The damage has been done, and it's too great to reverse. I just want to ID my enemy.
Honestly, I'm not a doc..but I've done a lot of research on this shit, and my guess would be:
It sounds like extreme systemic inflammation, caused in part by gut/digestive issues. Most doctors don't know how to address gut problems.
The mental health and physical health are most likely two in one. Have you tried eliminating foods from your diet and testing them one-by-one?


Regardless, I'm sorry things have come this far. It fucking sucks how the body can fall apart the way it does. I'm experiencing something similar. It's gradual, but definitely getting worse by the day.

I have thought about autoimmune problems as the culprit for a lot of my symptoms. I have already eliminated a lot of food that i know for a fact trigger gut problems for me. Stuff like bread, diary, and stuff worsens my IBS symptoms. The thing is, i can't change the diet unless i know for a fact what it is that i can't eat. I know there are paleo diet that's supposed to eliminate all the triggering foods that a person can eat, but that diet is super expensive and hard for me. My digestive issues are getting bad over the past months, and i made the mistake of waiting too long to find another doctor, and now the covid 19 has shut everything down. The GI doctors i saw last year didn't find anything, but recent months have been hell for me. My stomach issue is making sleep hard and miserable. If i am ever going to get a diagnosis, now is the time, but covid 19 says fk u. So, i am fked.
What enrages me is in my autopsy they will quite easily see my ailments
And the cost of cleaning up my suicide to the system will be much higher than it would've been to treat me.
Beyond a cruel joke.
That's honestly what i have been fantasizing about recently. If they find my body, they're going to cut me open and probably find out what's wrong with me. I imagine the medical examiners have cut open so many people so often, that the moment they cut me open, they'll see exactly what's been bothering me. If this really happens, i hope they write a detailed report and my family can use it to sue all those incompetent doctors that have seen me over the years.
It's almost as if most doctors today are nihlistic psychopaths who factor your complete insignificance into 8 billion other people and realize you're not worth the extra time to run some detective work and try and figure you out―so they instead prescribe a gambit of psychotropic meds that only mask symptoms temporarily while damaging your body behind the scenes.
Spot on! I have been prescribed antidepressants since i was 18. My healthproblems were most likely very solvable at that point, but instead of investigating and really find out the root causes of my problems, including my depression and anxiety, they drug me with SSRIs that did more damage behind the scene. Now i suffer from thyroid/ hormone imbalance issues that i know for a fact developed because of the SSRIs. They started months after i started the SSRIs, and then the doctors tell me i should stop taking them. I did, the problem still persists on top of all my other problems, and guess what? Now a different doctor tells me to go on antidepressants again. What a joke. I must be a joke to them. Just another patient. Just another random pill from a list of sponsored pharma companies.
 
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Arvinneedstodie

Arvinneedstodie

Existing is not living
Sep 17, 2018
198
It makes me sad to see how many people struggle with unknown disabilities or just simply can't go to a doctor. I'm also with you all. I was diagnosed with juvenile fibromyalgia (I was 17 when diagnosed but was hurting WAY before), which, if you know anything about fibro, it basically means they don't know why I'm hurting. It seems that a lot of you have the same situation-- hurting but unsure why.
Another shitty part to all of this is the bills. Tests upon tests just to be told they don't know what's wrong and then my family has to fork over thousands. Fuck the system honestly.
Sorry i have to deal with fibromyalgia. My symptoms very much resembles that of fibromyalgia, but unfortunately i have not been officially diagnose by anyone.The doctors i have seen stop immediately beyond some blood tests. How did you get your diagnosis? What kind of treatment if any are you receiving? If only i can get put a name on my enemy before i die...
shit man, i relate all too well. i've been dealing with severe neck and back issues since 16, and its fucked my life up and is the main reason im suicidal as well. life just isnt anything like what it used to be... every moment is a struggle because im constantly in pain and discomfort. as you put it, i feel like an old man, if not worse. for me, i have a good idea of what caused it... and its something really stupid which shouldnt have led to something this severe and likely permanent. i've been to all types of doctors, and they've been unable to help. they did an MRI and basically concluded that the curvature in my spine is a bit messed up and i have "chronic muscle spasms", but idk if i've been officially diagnosed with anything. but even if i have, they havent been able to actually help me. so at this point i just dont have it in me to keep trying and having my hopes crushed, which is why im here. shit really sucks and i feel you man.
What do you think has caused your problems? If you don't mind answering. I also have some ideas as to what could have worsen or caused some of my problems, but why is it so hard to get any solid answers from doctors?
Yep. My username is my ailment, I have 'IBS' which is doctor's terms for 'you have these symptoms, we don't know the cause, we don't know the cure, and we don't really want to do tests because it's SO COMMON that we assume you'll just live with it like everyone else :)'

I'm only 23. My childhood and teens was constant stress and depression because of my horrible home life, and things were only just starting to become normal when I get hit with this. I feel like I'll never have the chance to be young and healthy. My entire life; plagued by misery. While I watch my friends live and thrive and never have to worry about chronic illness, or the fact they'll never be in good health again. What a sick joke.
Yea i feel you. I am a year older than you, and probably feeling the same. All these illness and depression have taken so much from me. I have missed out so much, and honestly i try not to even think about what healthy 24 year olds are doing out there. Makes my already sick stomach even sicker. What a sick joke indeed. I hope my life at least makes someone out there laugh.
I have a diagnosis but nothing to mitigate what happens. The long and short of it is that I had hypothyroidism undiagnosed and untreated for so long that I've apparently sustained nerve damage. Meaning I now jump at every little thing and even minor annoyances make my skin burn for hours and make me dizzy even after the annoyance/stressor has long been resolved. I also have panic attacks that make me believe I am dying and, ironically, it scares the bejeezus out of me.

It's nothing compared to what most of you suffer but it's enough to add to my overall misery. :/
hypothyroidism is not nothing. I have long suspected that my problems have something to do with thyroid issues, but i don't know for sure. If it truly is a thyroid issue, then my nerve is probably damaged beyond repair because of it. I already have a lot of nerve damage symptoms. Who knows, maybe the medical examiner will find out if it is my thyroid or not when he cuts me open because blood tests are not helping me XD
 
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clandestine

clandestine

still rolling stones
Nov 17, 2019
47
I'm the in same boat as all of yall.

@Arvinneedstodie if you suspect thyroid problems what were your TSH, free t3 and t4 numbers? There's a lot of thyroid experts who recommend smaller reference ranges. It's good to know the numbers themselves
 
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Creekalalia

Creekalalia

Member
Mar 30, 2020
28
After 5 years of struggling to find a diagnosis (after being told by 3 PCP's and 2 specialist it was all depression and Bi-polar related) I was diagnosed TODAY with fibromyalgia. Which is basically the dx they use when they have no idea what's actually wrong. I used to think conspiracy theorist were a bit wacky; but after a year and a half of "research" (Youtube, forums, Gaia TV, starseed, etc.) I truly believe there is a lot more truth than fiction to these theories. Chemtrails, 5G, even now the C-19. It's all part of the agenda to reduce the population. They are literally poisoning us in the air, the food, and the water. I think there is so much more to us than we know though. I think those of us who struggle so much were sent here, and chose to come here - for a reason, a purpose. We are light bringers, but we just don't remember it. We have to go through the same 'memory wipe' when we come here. But we are special, awesome, and amazing beyond our knowing. But we will find our answers and our peace. If we have to leave to do so, it's ok. There is no judgement and no penalty. We are deeply loved, admired, and respected for offering to come to this human experience. The angels, guides, and all souls in the Universe know this and they watch over us and help when they can.
 
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Arvinneedstodie

Arvinneedstodie

Existing is not living
Sep 17, 2018
198
my dad won't let me
Do you need to have his permission in order to see a doctor? I dont get it. If you think something is wrong with your health and you would like to see a doctor, then do it. Health is like everything.
 
selfhater

selfhater

Experienced
Mar 1, 2020
222
Do you need to have his permission in order to see a doctor? I dont get it. If you think something is wrong with your health and you would like to see a doctor, then do it. Health is like everything.
ya i live in shithole country i can't do anything without my male guardian :(
 
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Luchs

Luchs

kristallene Bergluft über verfallener Gruft
Aug 20, 2019
528
ya i live in shithole country i can't do anything without my male guardian :(
That's fucked up. I feel really sorry for you, like that's middle ages levels of stupid.
 
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Arvinneedstodie

Arvinneedstodie

Existing is not living
Sep 17, 2018
198
I'm the in same boat as all of yall.

@Arvinneedstodie if you suspect thyroid problems what were your TSH, free t3 and t4 numbers? There's a lot of thyroid experts who recommend smaller reference ranges. It's good to know the numbers themselves

Hi, thanks for replying. My most recent lab was done in Dec of last year. My "TSH HIGH SENSITIVITY" was at 1.07 mIU/L. No test for free t3 or t4. I'm guessing those are the complete thyroid panel tests. The endocrinologist I saw never even bothered to mention t3 or t4.
ya i live in shithole country i can't do anything without my male guardian :(
Dam. I dont know what kind of situation you're in, but it sounds awful. If you can access the internet, and seems to be fluent in english, maybe you should try to contact some international non profits? There are specific nonprofit organizations that focus on specific demographics in specific countries. Use the internet to it's full potential, look up things. What country do you live in?
 
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K

Kornyboyo

Student
Aug 7, 2019
102
Look into the psychatric drugs you are on if any. That is probably the cause of all your problems. If so, need to SLOWLY taper off.
 
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Arvinneedstodie

Arvinneedstodie

Existing is not living
Sep 17, 2018
198
Look into the psychatric drugs you are on if any. That is probably the cause of all your problems. If so, need to SLOWLY taper off.
I've been off medication for almost 2 years now for that exact reason. The meds was definitely making some of my symptoms worse, like messing up my already messed up hormones. Add to my fatigue and cause a whole different type of brain fog. The endocrinologist at the time told me to stop my antidepressants. I did, but most symptoms continue to get worse. Each year my health reaches a new low. Last time I saw doctors, they wanted me to go on meds again. So I have decided to never go on antidepressants again. I dont want to give doctors the excuse of saying "its your meds".
 
clandestine

clandestine

still rolling stones
Nov 17, 2019
47
Hi, thanks for replying. My most recent lab was done in Dec of last year. My "TSH HIGH SENSITIVITY" was at 1.07 mIU/L. No test for free t3 or t4. I'm guessing those are the complete thyroid panel tests. The endocrinologist I saw never even bothered to mention t3 or t4.

T4 is a thyroid hormone that turns into the active hormone, t3. They usually won't test for them unless the TSH is superrr high or low. it can be helpful to know the levels, reverse t3 actually aswell but that one is basically impossible to get from a doctor unless privately. TSH is actually secreted from the pituitary not thyroid. My TSH is around the same number despite similarly suffering some hypo symptoms but apparently other factors like cortisol can lower TSH. You might wanna look into Broda Barnes and start taking your temperature. He said that was the best way to gauge metabolism and thyroid function.
 
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Arvinneedstodie

Arvinneedstodie

Existing is not living
Sep 17, 2018
198
T4 is a thyroid hormone that turns into the active hormone, t3. They usually won't test for them unless the TSH is superrr high or low. it can be helpful to know the levels, reverse t3 actually aswell but that one is basically impossible to get from a doctor unless privately. TSH is actually secreted from the pituitary not thyroid. My TSH is around the same number despite similarly suffering some hypo symptoms but apparently other factors like cortisol can lower TSH. You might wanna look into Broda Barnes and start taking your temperature. He said that was the best way to gauge metabolism and thyroid function.
So you mentioned that typical doctors wont check any deeper than a TSH test. What can I do at this point? Did you get your problems sorted? If so, how did you go about that process? I'm thinking maybe I should visit one of those private hormone replacement specialized clinics. I have read good things about those places for people who can't get any answers or treatments from run of the mill mainstream doctors. What do you think?
 
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A

AintNoWayOut

Student
Jan 6, 2020
173
What do you think has caused your problems? If you don't mind answering. I also have some ideas as to what could have worsen or caused some of my problems, but why is it so hard to get any solid answers from doctors?

i'd rather not say because its pretty weird/embarrassing.. i've only told my dad and step mom and thats because they basically forced me to. maybe i'll just stop caring and tell you in a PM but right now i'd rather keep it to myself. lets just say the whole situation is ridiculous and it shouldnt have crippled me the way it did.

and idk, i think this physical world can be cruel and sometimes even doctors cant find answers or solutions. maybe some are unqualified and dont know what the hell they're doing, but i also think that we view them as these magical healers who can diagnose and fix any ailment, but unfortunately, their power is limited since they're human too. its still frustrating as hell to deal with them not be able to help you, but in some cases maybe we're beyond being helped. i wish there was a wand out there to fix all of us but we're stuck relying on other people, and the human body is so complicated that sometimes they're stumped. its the harsh reality of things :/
 
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taylor321

taylor321

Member
Mar 1, 2020
84
Yep. I'm a frail individual as well. So you're not alone in that, friend. My whole life has been filled with one disease after another. But I've had weird symptoms for 3 years now. Chronic air hunger, overheating, skin is always hot I feel like a furnace but my temp is OK even slightly lower than normal. I always wake up so hot one could argue that I have a chronic flu or something. Blocked nose most of the time. Terrible fatigue and ocassional nausea that last daays I get tired really easily and when I do the most basic things I'm soaking wet. I've been to many doctors with this and not even one took me SERIOUSLY. What I learned by that is... Most of the doctors out there do not care, don't have enough empathy instead of diagnosing you they suggest treating symptoms not the actual cause.

I've had a fun experience with a doctor not that long ago... I visited him with a CT scan of my lungs as I have lung scarring from HL I had when I was younger. I told him about the chronic air hunger that I've had for some months now that it's a first and it never happened before and that it's severally affecting my quality of life i can't breathe normally etc etc and instead of doing more test to diagnose me he just said: "well you've had cancer and your lungs got scarred in the process, I GUESS YOU WILL HAVE TO. LEARN TO. LIVE WITH THAT AIR HUNGER"

But I just told you that I can't you f*cking asshole.


So yeah... If you're sick you're lucky if it's something easy to diagnose or you find a doctor that actually listens.
wow im really sorry about that, thats messed up. Reminds me of when i was reading something online about how womens pain is taken less seriously then mens which is why so many pregnant women keep dying in hospitals. I always found that doctors/therapists completely ignore anything i have to say. I thought it was all in my head or maybe they weren't taking me seriously cause of my age. Now im just like idk, if i was a male would they have taken me more seriously?
Anyways i hate 99% of doctors/therapists, they are completely full of shit. I used to think people became doctors and therapists to help ppl, holy shit was i wrong -_-
 
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clandestine

clandestine

still rolling stones
Nov 17, 2019
47
So you mentioned that typical doctors wont check any deeper than a TSH test. What can I do at this point? Did you get your problems sorted? If so, how did you go about that process? I'm thinking maybe I should visit one of those private hormone replacement specialized clinics. I have read good things about those places for people who can't get any answers or treatments from run of the mill mainstream doctors. What do you think?

well I think it depends on where you are aswell. Nah I haven't that's why I'm here lol. I do have hypo symptoms but I don't think my problem is primarily hypothyroidism. If you can afford to go private, sure. That's basically what I'm gonna do at some point but it'll be really expensive to first find the right specialist and then go through different diagnostic tests. In the mean time I've been trying to educate myself in order to narrow down my condition.

A lot of your problems do sound hormonal so you might be on the right track? Have you checked your testosterone? Cortisol? Progesterone? Estrogen? dhea? And have you ever seen a gastroenterologist for your stomach issues? How's your body composition? Fat gain can be hormonal. Also how's your cholesterol levels? Most hormones are basically made from cholesterol

You could also use an online service to get blood tests you want done.
 
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AMorteVivente

AMorteVivente

The void is only scary until you truly suffer
Mar 15, 2020
42
Well I have erectile dysfunction, I already spent 7k to solve this. They found nothing. The same applies to my hair.
My situation is similar, I have sexual anhedonia caused by psychiatric meds, so it'ts hard to enjoy sexual pleasure. Anhedonia is one of the main reasons why I can't seem to be able to enjoy life as a normal person would (it affects me in many ways). I hope they will be able to fix our problems eventually :hug: .
 
M

mediocre

trapped here
Nov 9, 2019
1,442
Yes I have burning pain, aches, fatigue, all sorts of strange sensations among other things and I have no answers for it. It could be my b12 defiency but maybe not. I haven't gotten any answers just guesswork. It's so frustrating.
 
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BrokePlatypus

BrokePlatypus

My body sucks.
Jun 14, 2019
21
For the last 2 years my walking has gotten worse and its extremely hard to move my body. I feel for all of you. The doctors make me go to physical therapy but it feels like it's wrecking my body even more. I have horrible bowel issues and they just send me to a therapist which ended up getting me nowhere and them telling me that they couldn't help me and referred me to other places. I have constant back pain and organ pains. It's getting harder and problems keep coming up. But now I'm getting kicked out of my house because my mom literally doesn't care. She hasn't loved me in a really long time and it's obvious. She cares and does things for all my siblings but not me. I get left out of so much and it hurts. Why would you just kick out your child that depends on you? I got denied disability and jobs are hard to come by that will accommodate all of this. I feel a little better after this thread. But it'll probably end up with the night night method here in the next few days.
 
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Arvinneedstodie

Arvinneedstodie

Existing is not living
Sep 17, 2018
198
Why would you just kick out your child that depends on you? I got denied disability and jobs are hard to come by that will accommodate all of this. I feel a little better after this thread. But it'll probably end up with the night night method here in the next few days.
My family has also abandoned me. I mean, I have made it very easy for them to do so too, so I dont blame them too much. It definitely sux to deal with complex debilitating health problems alone and not have any support. I wonder how many people are dead because they have no one to hold on to. No one to help them through their fight.

Jobs are definitely hard when you deal with this kind of stuff. Whenever I find a job, I quit after a few months because my mental health eventually takes a downhill spiral again. Sometimes I think about the life, opportunities, experiences, relationships, and normal life stuff I have missed because of my life circumstances, it's like a massive hammer hitting me in the chest. Awful.

Night night sounds good, but I want to know what is causing all my problems. What's causing the symptoms. The damage has been done, but I want to name the enemy that has killed me. then I'll go into that night night easily.
well I think it depends on where you are aswell. Nah I haven't that's why I'm here lol. I do have hypo symptoms but I don't think my problem is primarily hypothyroidism. If you can afford to go private, sure. That's basically what I'm gonna do at some point but it'll be really expensive to first find the right specialist and then go through different diagnostic tests. In the mean time I've been trying to educate myself in order to narrow down my condition.

A lot of your problems do sound hormonal so you might be on the right track? Have you checked your testosterone? Cortisol? Progesterone? Estrogen? dhea? And have you ever seen a gastroenterologist for your stomach issues? How's your body composition? Fat gain can be hormonal. Also how's your cholesterol levels? Most hormones are basically made from cholesterol

You could also use an online service to get blood tests you want done.
Yea, I definitely think my problems are mostly hormonal. Whatever is causing them seems too complex for me to even begin figuring it out. I have some symptoms that I think are telltale sign of thyroid/ hormone imbalance. During the worse of times when I feel absolutely crap, my face gets all puffy, brain fog gets bad, I start to lose muscle masses, libido goes dry, fatigue goes bad, and etc. These are all symptoms of thyroid problems. My testosterone levels are also too low for my age. Not low enough for doctors, but i feel it. During the best of times when I felt much better my testosterone level was at 500ish. When I feel absolutely crap, my t level goes down to 300s. I'm also very skinny, and have been losing weight again probably due to my stomach/ GI issues. So doctors always dismiss any thyroid problems because im apparently too skinny to have it. Even though a simple online research shows not all thyroid patients gain weight. Many do lose weight. Anyway idk where I'm going with this rant anymore.

Private clinics really are expensive, but I'm going to give it a go. Once this corona virus is over, I'll set up an appointment with another conventional doctor, try to figure it out again. If nothing comes of it, then I'll go and see one of these private hormone clinics. See if I can afford them. I dont know what else to do.
 
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T

TimeToBiteTheDust

Visionary
Nov 7, 2019
2,322
I had a surgery that made things worse. My life is not the same and it won't be. I want to ctb and end this shit. Also have chronic pain and doctors say everything is OK. This sucks. Seems like a nightmare. This is not like being ill, you're in bed for 3 days, recover and go back to your normal life. No this is all the same and for many years I'm like this and I can't go back to my normal life. I can't wait to be dead. I stopped living many years ago now I am only existing wishing to die. That's my reality.
 
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toomuchtimetodie

"to be overly conscious is a sickness"
Mar 13, 2020
296
That's honestly what i have been fantasizing about recently. If they find my body, they're going to cut me open and probably find out what's wrong with me. I imagine the medical examiners have cut open so many people so often, that the moment they cut me open, they'll see exactly what's been bothering me. If this really happens, i hope they write a detailed report and my family can use it to sue all those incompetent doctors that have seen me over the years.
For some reason I never got a notification of your reply... I'm glad I'm not the only one with this thought.
I hope things work out for you but if they don't I hope like you say your family have a case to sue...
My family couldn't care less it's all 'brush it under the carpet. Even when I was on my deathbed at 19 with blood loss due to a genetic GI deformity that took them 4 years to diagnose... Guess how it was diagnosed... A competent surgeon re-examined the very first CT scan upon presenting to hospital when it first started and said it was obvious what was wrong and he didn't know how they could have missed it. So I had 4 years of unnecessary suffering because of a scumbag doctor who didn't like the look of me. Looking back I should have sued them but like I say my family would even blame any poor lifestyle choice before the diagnosed stomach deformity.
 
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Arvinneedstodie

Arvinneedstodie

Existing is not living
Sep 17, 2018
198
For some reason I never got a notification of your reply... I'm glad I'm not the only one with this thought.
I hope things work out for you but if they don't I hope like you say your family have a case to sue...
My family couldn't care less it's all 'brush it under the carpet. Even when I was on my deathbed at 19 with blood loss due to a genetic GI deformity that took them 4 years to diagnose... Guess how it was diagnosed... A competent surgeon re-examined the very first CT scan upon presenting to hospital when it first started and said it was obvious what was wrong and he didn't know how they could have missed it. So I had 4 years of unnecessary suffering because of a scumbag doctor who didn't like the look of me. Looking back I should have sued them but like I say my family would even blame any poor lifestyle choice before the diagnosed stomach deformity.
My family has the same attitude as yours, but a lot of those doctors need to be sued for their ignorance alone. I get it if some doctors are not capable enough to diagnose some complex illnesses, but to waste our time and money instead of being honest and say they dont know is a crime imho. They should have tiers for doctors, so people with complex illnesses can move up that tier. Tiers should be ranked by how doctors diagnose and treat complex illnesses. All we have now are a lot of mediocre doctors with fake online reviews. Or maybe something like having a national or international system where patient symptoms are publicized for doctors to see. Let the doctors choose who they can treat.

All we can do right now is try one by one, with some appointments months down the line, only to be wasted by some really arrogant ignorant incompetent doctors. I have wasted 6 years of my life this way. Still nothing. Fk me.
 
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toomuchtimetodie

"to be overly conscious is a sickness"
Mar 13, 2020
296
. I have wasted 6 years of my life this way. Still nothing. Fk me.
All my suffering was for nothing due to having mental problem of false hope and I mean that sincerely. Combination of society, myself and bad parenting I believed things could get better and I'd experience happiness.
if I had a half compassionate doctor when I went in when I was 18 with a different complex abnormality my life may have been totally different and If they'd have treated me I may not have been a dreg on the system turning to drugs and alcohol and the self inflicted problems they caused down the line. But by that doctor when I was 18 turns out I was lied to told I didn't have the condition only to find out ten years on in January that I do. He'd covered his tracks. So he can't be held accountable. It's a joke. You only stand a chance if you are born into money and support or good genetics.
 
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A

ArtsyDrawer

Enlightened
Nov 8, 2018
1,444
"Medically resistant" epilepsy.
We're pretty sure it's epilepsy, we're pretty sure where the main node/cluster is, we're pretty sure it's possible to carve out. Maybe. Needs more testing. Always needs more testing, that's one of the problems - always have something new to test for. It's been ten years now. More. Quit counting by like year 8.
Next big thing is sticking electrodes directly under my skull.
Trying to keep me on the pills for life.
 
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Outsider

Outsider

deep in darkness
Apr 1, 2020
62
I have chronic fatigue and hypersomnia for at last 4 years. Doctors say it is depression because blood tests are fine but none of antidepressants worked. I dont know maybe they are right but maybe I have depression because of having these life disabling symptoms in the first place?
Then there is chronic nasal congestion, occasional frontal sinus pain for at last half of my life. Been to lots of ENTs, they only look and give drugs that dont work, no CT scan nothing. I also have feet and hand pain. For hands i suspect it is carpal tunnel cause sometimes I feel electricity going, but first dr dismissed me after bloodwork being fine.
What also sucks is having diagnosed illnesses that cant be cured, but only managed. My wife has rare disease and needs multiple surgeries yet she was completely ignored by health care system.
 
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Arvinneedstodie

Arvinneedstodie

Existing is not living
Sep 17, 2018
198
All my suffering was for nothing due to having mental problem of false hope and I mean that sincerely. Combination of society, myself and bad parenting I believed things could get better and I'd experience happiness.
if I had a half compassionate doctor when I went in when I was 18 with a different complex abnormality my life may have been totally different and If they'd have treated me I may not have been a dreg on the system turning to drugs and alcohol and the self inflicted problems they caused down the line. But by that doctor when I was 18 turns out I was lied to told I didn't have the condition only to find out ten years on in January that I do. He'd covered his tracks. So he can't be held accountable. It's a joke. You only stand a chance if you are born into money and support or good genetics.
That's how I feel. I was absolutely hopeless and lost when i was 18, and if doctors just treated me a little bit better i would have turn out a lot different. Even now at 24, if doctors can just listen and really help me out then I would be so much better off. Even if there is no cure, just work with me not against me...

The healthcare system for regular people really is laughable. They keep you alive, that's it. They dont care if there are complex issues making your life intolerable. We are spendable. The amount of resources, time, and expertise needed to treat each and every one of us to the fullest is just not there. Like you said, you either get born with good genetics or have a lot of money. Otherwise, you're fed.
 
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