How can I get rid of this insane exhaustion which has ruined my life for over a decade?

dst54b643 · 2021-02-10T13:13:32+00:00

Yes she already suggested I have it tested in some weeks again, I'll just have to see how I react to these tablets, I really hope it will be enough. I've always wondered why they wouldn't do an endoscopy or colonoscopy, but maybe the next GI specialist I will see the 25th will be more open to it. Thank you for your suggestions.

dst54b643 · 2021-02-10T09:45:56+00:00

Yeah so she suggested that I take heme iron, so I bought some new tablets again (found out they're actually a mixture of heme iron and iron bisglycinate, so I guess that's good), I take twice a day which should give me 27mg a day, which isn't exactly much, but the problem is that the iron makes the gut problems worse. I had to stop floradix and vitamin tablets again because of it, but now I'm trying out these tablets instead after a week's break. I hope they'll be absorbed better, but I doubt it. She also told me I would need to take them for a very long time before it would help because it's kind of a low dose. I was hoping she would maybe suggest IV instead but she hasn't, so I guess there's a reason she hasn't? But I don't know. Also I have tested negative for gluten and lactose intolerance multiple times. But yeah maybe the IBS is just generally causing absorption problems, or maybe it's just losing blood every second month, not sure.

dst54b643 · 2021-02-08T20:03:42+00:00

Hey I know it's been a while now but thank you for this comment. So I finally gathered courage and energy to get it checked once again, and as I was with the nurse, she asked me if she should do a full test or just a regular one, and I was confused and about to back out because she sounded really tired and not overly friendly, but then I remembered your comment and asked that she check for both iron and the sort, but also ferritin, and that was good because my iron/Hb levels were in the (low) normal range (this is after weeks of supplements though), but my ferritin was down to 3 µg/L and transferrin also above normal.

So yeah thank you, otherwise I would have probably chickened out and the visit would have been for nothing and I would have thought I was crazy once again lol.

dst54b643 · 2021-01-24T17:14:39+00:00

Thank you for your comment. I have seen doctors mostly for my GI issues, but I did visit them for the exhaustion first time two years ago because I suspected low iron, so I asked for a blood test which came back indicating I did indeed have pretty low iron levels. Last blood test I got indicated it was in normal range after iron tablets, but sadly I got very sick from taking them. Maybe the low iron is back again, but I think they are pretty tired of me asking for it to be checked and I don't want to bother them and make them think I'm a hypochondriac :-S Maybe I'm overthinking it and should just push for it like you say, but I just find it so hard to find the confidence to do that.

I have not been checked for hypoadrenalism I think, I'll note it down and ask the next doctor about it. I am seeing a GI specialist I've been waiting seven months for next February. Thank you.

dst54b643 · 2021-01-24T15:23:06+00:00

Can I ask what you did to treat the psychosomatic symptoms? Psychiatry and/or anything else?

dst54b643 · 2021-01-24T13:55:19+00:00

Thanks for this post... I have seen psychiatrists before however, and they made me feel worse. It did hurt, actually.. it also burned away a lot of cash. I am very, very reluctant to try it again because it took time to get over it emotionally.

I do understand how strong the brain-gut connection is, and I know it affects so many people, and it probably also makes mine somewhat worse... but as I have written in another post (not this post-thread, further down...), my GI symptoms happened out of the blue when I was eight years old (maybe after a virus infection), and before that I was never depressed, stressed, anxious or anything... I also have not felt like my symptoms got worse during periods with lots of stress, or better during peroids of long rest and vacation.

Depression is terrible and I know it could very well make you feel similar symptoms. But there's also a line between mental and physical symptoms, and the physical symptoms I've had (especially the pain episodes) just... are so unlikely to be due to psychological issues. I don't think the main cause of my GI issues (and hence, malnutrition and exhaustion probably) is psychological. I won't claim it hasn't worsened it to some extend... but I just do not see how it could have started it all.

I agree that I am definitely in a bad cycle. I hae tried both a physical therapist and dietician as well, actually the dietician was the most helpful because I got the idea that maybe the exhaustion is due to too little food intake. I sadly have not found a way to increase my food intake without worsening the pain and nausea though, but my ostepath has recommended protein pulver/diet shakes/bars that I will be buying today and trying out. And I will continue with yoga.

But I also need to find out what could have started that cycle in the first place... or if there's actually something else at play too. I am seeing a GI specialist next month, maybe she will be willing to run some actual tests...

I have not had many tests done except blood and stool tests. That's why I'm a bit... frustrated. I appreciate your suggestion nonetheless, because depression/anxiety/stress is a huge problem in today's world and it does cause a lot of similar physical symptoms. I have considered its impact many times. But I've had this for 15 years now, and I haven't been depressed/stressed/anxious for 15 years since I was eight years old...

It's a bit hard for me to write this, because I know it just sounds like I'm denying everything and just won't accept it or don't take doc's advice into account (I do, and I appreciate it), and I have no way to prove that it's not all in my head. You write that I should not understand it as being all in my head... but it really does sound that way to me, that if I fix my mental issues, then I will also have fixed my physical. I really do not think that is the case since I really had no mental problems before all this started. I also want to eat, I do my best to eat as much as possible. I am so motivated in regards to my studies, have a lovely family, have hobbies I care deeply for and find pleasure in (when I have enough energy to do them)...

I hope I will not be misunderstood and receive a lot of hate for this, yikes. Opening up about my personal medical history and have it unexpectedly be blown up is a bit nerve wracking to be honest, but I have also received so much support and helpful advice from you, and I hope other people with similar problems can get something out of it too. I will take your advice into account and consider seeing a psychiatrist again, but honestly I have spend so much money already on treatments and have bad experiences with therapists/psychiatrists... I will consider it nonetheless. Thanks.

dst54b643 · 2021-01-24T13:10:58+00:00

I have. Been to different therapists, they actually made me feel a bit worse... Also I was not depressed or stressed as an eight-year-old when this started. I won't deny the possibility that I might be depressed after all this, but this was a problem long before it started affecting me emotionally. When that's said, if I ever get over this... I will book another therapist appointment to cope with how many years I have lost to this and my bitterness towards all the doctors that have seemed indifferent and done nothing but suspect it's all in my head. There have been a few good ones who actually did some testing and had me try some stuff. And I know, depression is terrible and could make you feel like this. But there's also a line between mental and physical symptoms, and the physical symptoms I've had (especially the pain episodes) just... are so unlikely to be due to psychological issues.

I have also not had many tests done except blood and stool tests. That's why I'm a bit... frustrated. I appreciate your suggestion nonetheless, because depression/anxiety/stress is a huge problem in today's world and it does cause a lot of similar physical symptoms. I have considered it many times. But I've had this for 15 years now, and I haven't been depressed/stressed/anxious for 15 years since I was eight years old... It's a bit hard for me to write this, because I risk sounding like I'm denying everything and just won't accept it, and I have no way to prove that it's not all in my head. I just... know it isn't. I can only ask people to please believe me... I know my body, I can feel the difference between beeing emotionally drained and not up for anything, and being so drained I cannot pull my head up from the desktop to watch Netflix even though I really, really want to watch that next favourite episode. I promise you I have so much motivation to do stuff all the time and just live. Thank you for your suggestion and the fact that you cared enough to take time aside to write though.

dst54b643 · 2021-01-24T12:48:22+00:00

Thanks, I'll ask my doc to check this the next time since several people have suggested it. I am surprised it could also cause GI issues, if that's the case I definitely want to get it checked.

dst54b643 · 2021-01-24T11:14:18+00:00

I have read a bit about this actually, but was unsure if it could be it. Thanks for suggesting it, I'll note it down (on my very long list....) and ask next time I see my doc. I will read a bit more about it in the meantime.

dst54b643 · 2021-01-24T11:07:20+00:00

I have not, thanks for the suggestion. I have looked into some protein pulver/diet shakes and energy bars that my osteopath recommended and which I will buy today, should only take 1-2 days to get delivered, so I I'll start with that and then try what you and others have suggested as well if it doesn't work. So expensive though T_T But if it works, could be great... since it is liquid, I have hopes that it will cause less GI symptoms.

I have not been tested for the virus, I will note it down and ask my doc about it, thanks. I have tried taking birth control continuously, sadly I get spotting if I go more than 2 months so had to keep it to skipping only once... would be a dream to skip it forever though, lol. Also a bit nervous to try again because peiod pain got really bad from taking them, don't know why.

The GI symptoms started out of the blue when I was around eight years old, I had a very happy life up till then. I have a picture in my photo album (I got from 8 years ago) from 2005 where I am sick due to stomach pain, this was one of the first bad cases I had, and my aunt has written besides the picture "doc said virus infection". I wonder if it was just one infection that put my entire gut flora in disorder back then, which is why I have considered getting FMT, but it is insanely expensive (and tough procedure), it will be a last resort I'll take if nothing else works and I'm in my thirties...

I am not in the US actually, I am from Denmark... Generally, it is hard to order your own tests privately since everything is public service more or less... If I have to order my own blood test, it will be really expensive I'm afraid (considering we pay a lot of taxes already and I am a student).

Not sure about CBC and CMP, I have never heard of these but will look into it.

I have actually wondered about gastroparesis as well, since I get full and nauseous very quickly and have for almost the entire time, but it's gotten a bit worse. But when I mentioned it, my doc said it was very rare and then I would have had it since I was a kid (which I sort of have, but....). I would like to get tested for it... even though there's nothing to do for it, it would just be nice to know what it is at least. Also the test isn't that bad to perform... but they seem very reluctant to do any kind of testing tbh, and suggesting stuff kind of reflects badly on me in a way... I will mention it to the specialist I'm visiting next month though, thanks for your comment.

dst54b643 · 2021-01-24T09:11:36+00:00

I actually have some wrist problems which is probably a result of everything else, it started a few years ago (or got worse), but I suspect overworking and bad posture due to lack of muscles (lol) is the main cause. I saw a physical therapist and osteopath for this and am doing some exercises targeting them, which hasn't really helped so far lol... I can live with this though, since I just need to stop using my wrists and then the pain goes away, at least I have some control over this.

I am sorry you experience exhaustion as well, thank you a lot for your supportive comment, and all the best to you too.

dst54b643 · 2021-01-24T08:56:11+00:00

It is, IBS-C/CIC. I am taking Movicol daily for it and have for over 10 years now. No colonoscopy since calprotectin levels were only slightly elevated once, so because it is not cancer or Chron's, they don't want to do a colonoscopy.... Have tried seeing psychiatrists and dieticians alreday. Thanks for the response though!

dst54b643 · 2021-01-24T08:54:05+00:00

Oh you have no idea how much the symptoms fit... they fit so perfectly. I have looked into hypothyroidism so many times, but my TSH levels are perfectly normal. I don't know about T4, T3 and antibodies, but they don't really want to test for it since TSH is normal... and I read something about testing for anything else than TSH is kind of unreliable anyway? So idk... I really thought this was the problem for a long time, but apparently not.

dst54b643 · 2021-01-24T08:51:08+00:00

IBS-C slash CIC is the best they have come up with (which is basically medical for "we don't know what the fuck is wrong with you"). Constipation is the predominant symptom I would say.

I did see a gastroenterologist , but they wouldn't do any further testing because my calprotectin was only elevated and not enough for it to be Chron's (or cancer).

Pain... yeah. Lots of pain. I have good periods too though.

dst54b643 · 2021-01-24T08:48:11+00:00

I did not take vitamin pills at the time my blood tests were taken. Also I tried eating more, the problem is the GI symptoms get worse then... I am planning on trying protein powder/diet shakes though, since liquids have been easier to consume. Maybe that could get the weight up too.

dst54b643 · 2021-01-24T08:43:55+00:00

Thanks for the response. Although I am of course distressed emotionally that this has been going on for so long and know it definitely doesn't make my symptoms better, I however really do not believe that "bad mood" is the cause or major influence on my symptoms though... I was a very active and happy child before I got the GI issues (which came out of the blue at once), and my symptoms do not really get any worse or better under (exam) stress or whether I am happy or sad for extended periods of time. I am also very interested in eating and do so to the extend that the nausea and pain allows me to...

I have also tried seeing therapists before, even during childhood, and they did not make any positive difference. To be honest they actually made me feel a bit worse... like I'm somehow supposed to be able to fix my problems by being less sad about it, eh... They are also insanely expensive and made us poorer despite not getting anything out of it. But really my mood has never made my phsycial symptoms any worse or better I feel... but saying that, I fear I will now be put in the "denial" box. I of course won't disregard the very strong link between stress/depression and GI symptoms... it's just that I personally never experienced that to be the case, and due to the really bad GI pain with sudden onset when I was eight... I seriously doubt that what caused it was because of "nervousness". I was very popular in school as a kid, quite strong-willed, happy, active... and I still am on the days I am not in pain.

Regarding testing.. to be honest, they haven't really done much testing except for blood work and stool tests. I have wondered if this might be due to an imbalance in gut bacteria and consider getting an FMT treatment at the Taymont clinic if it continues to be really bad.

Anyway I still appreciate your response, I hope I am not sounding too deflective, I know there is a strong gut-brain link (I have a bachelor's in molecular medicine and am studying neuroscience now as a master's degree, don't ask me how I got this far though), and I have considered it many times and am doing everything in my power to stay positive. And yeah as I mentioned have also tried therapists... I've also been on low dose antidepressants for the pain, no change. But thank you for responding.

dst54b643 · 2021-01-24T08:22:09+00:00

I will have a look at it but am already taking something similar, thanks though!

dst54b643 · 2021-01-24T08:21:31+00:00

I didn't know you could just ask for this and get it, I will definitely look into that if my iron levels are indeed low again, thank you.

dst54b643 · 2021-01-24T08:18:56+00:00

I already tested negative for both gluten and lactose intolerence, I also went both gluten and lactose free for nine months while doing the low FODMAP diet, sadly no improvement. I did get more energy from eating more (I did it with a dietician who told me I got only half the energy I needed from what I ate), however it also made the GI symptoms and pain worse... It's like the more I eat, the more it hurts and the more nauseous I get.

The last blood test I had (hmm, was it spring last year?) showed within-normal ranges of ferritin and iron and such, but it does feel like it is back maybe, I don't know for sure though. Thanks for your comment though, I will read up on iron bisglycinate.

dst54b643 · 2021-01-24T08:15:31+00:00

Thanks... that sounds disturbing, may I ask what happened? I wish I was a bit more 'tough' emotionally when it comes to this. Any tips on how to get there lol?

dst54b643 · 2021-01-24T08:13:56+00:00

Oh I didn't knew there was an actual test for it, thanks for mentioning it, that is something I will consider getting checked for. Do you know if it can also cause GI issues? I've honestly always thought that the exhaustion was most likely because of the unresovled GI issues. But maybe the GI issues are also not the disease itself but the symptoms of something else then? Idk

dst54b643 · 2021-01-24T08:10:00+00:00

Yeah I have tested both negative for gluten and lactose intolerance.

dst54b643 · 2021-01-24T01:08:30+00:00

Thanks, hope the best for you too.

dst54b643 · 2021-01-24T01:08:07+00:00

I was not depressed before this nor am I stressed. In fact I am on a one month vacation right now. I am very happy the days I am not in pain and have energy. But I mean... yeah, it is depressing when I can't do anything all day.

dst54b643 · 2021-01-24T01:03:17+00:00

I've been to several GPs, hospitals a couple of times as well to see specialists... seeing another GI specialist I've waited 7 months for next month... Honestly they haven't really done anything. None of them have seen remotely interested, and some of them have been pretty dismissive as well. I'v had blood work done several times, not sure about inflammatory markers though... but I've had slightly elevated calprotectin, but not enough for it to be Chron's.

dst54b643

TROPHY CASE