i feel like im dying

Debra, for how many years have you had these symptoms ?  Do you have them every day ?  or you have sometimes relief ?

Off and on for 5 years now. Tried HRT that made everything worse. Was doing okay for a few months. Then it hits again.

That’s really interesting... so HRT made it worse.  How crazy is that?  Does this mean that HRT is possibly prolonging the agony?  Or in which way do you think HRT made it worse?   It’s bad enough to have to worry about the side effects.  Then you would hope that HRT at least should work and make your life better.  And it doesn’t even do that.  

Hi Debra,

I also had it on and off for 5 years .  I was ok for 2 years and now since Oct 2017 until present it hit me badly again.  Please can you explain why hRT made it worse.  I’m so desperate now and was wondering whether to try it.  The last thing I need is something to make it worse.     I was given so many drugs for my stomach and each time they made me so much worse !!   By  now I’m very wary of any new drug or even herbal drug.  I don’t want ant to to get even worse!

Tanya, so sad to hear this, that is so heartbreaking when you have 2 days in a row where you’re feeling better .. then, of course,  you’re hoping that this is an indication that things are improving and then it hits you on the 3rd day.   So unfair !  I remember I had this happen to me as well.  I truly hope that this was just one bad day and that you will have right after that the ‘good days’ coming back.  It will get better ... for all of us ... it’s just a matter of time.  

Hi. Yes think it just makes the bad days worse if that's possible, after having a good day. Keep having some days where my legs arent just achy like they usually are, but they feel shaky and weak and it's almost like I'm walking around on legs that don't belong to me it feels really weird. Sometimes think I'm going mad. Also was convinced my son had his optician appointment so dragged him out of school walked all the way there and was told it's next week. So forgetful lately. I do hope it all gets better, for all of us.

Tanya, also I have done similar things like you with the optician when I’m in lots of pain then this happens.  What do you think from reading on forums ... does it sound that one day this will be over and we will be ‘normal’ again?  

At least I know I'm not losing my mind. Yes I think from reading all the posts that there is a light at the end of the tunnel as they say, just a matter of how long we have to suffer for first.

At least I know I'm not losing my mind. Yes I think from reading all the posts that there is a light at the end of the tunnel as they say, just a matter of how long we have to suffer for first.

No you’re not losing your mind.  It’s clear to me : it happens when you’re in lots of pain.  It doesn’t happen on one of the good days.  The whole thing is just unbelievably unfair.  I know that sounds a stupid thing to say.   Tanya, did you read anywhere on a forum or wherever :  When there’s light at the end of the tunnel .... does it sound like we will be as we were before this horror started ?  We all deserve to get back to where we were before.

No you’re not losing your mind.  It’s clear to me : it happens when you’re in lots of pain.  It doesn’t happen on one of the good days.  The whole thing is just unbelievably unfair.  I know that sounds a stupid thing to say.   Tanya, did you read anywhere on a forum or wherever :  When there’s light at the end of the tunnel .... does it sound like we will be as we were before this horror started ?  We all deserve to get back to where we were before.

Hi. It's nice to hear that I'm not the only one who does these weird things, not nice that you have to go through it as well. From talking to people or reading the posts on here people do say that it varies in how many years but they do get past it all, so I'm just living in hope that it won't be too many years. Never expected to be going through this at my age either but everyone is being so nice.

Hi.  I had 3 days where I was able to get a lot of work done.  And again I was so stupid to think 🤔 I was getting finally better.   But oh no today was back to hell again.  I don’t know what I would do without all these lovely people.  And how are you coping Tanya ?

Hi. I really feel for you, it makes it seem worse when you have had good days, really is so unfair. Yes the ladies on here all seem really nice, I was really unsure if I should of joined or how everyone would be because of my age but I was so desperate to talk to people who understand how I feel. Some days I cope better than others but it's a daily struggle which does get me down and my friends don't seem to understand they keep asking if I feel better yet and then I get comments like oh your always ill and I am having to constantly try to explain that I'm not just going to be fine, I've been struggling for a year already.

Hi,

I get exactly the identical words from friends and family ‘you’re always ill’.  They also say the ‘but you don’t look ill’.   What does that mean ?   Does it mean I’m faking it ?  However I do understand why they say that.   These stomach issue a feel so horrendeous  ....as Kim said ‘I feel like I’m dying’.  However, unless you’ve experienced it yourself you would have NO IDEA what horrible horrible feeling this is, in particular, with the accompanying bouts of dizziness, and sometimes the stupid anxiety that comes out of nowhere.  

 I sent you 3 other posts ( they appear in other positions ‘higher up’ about the subject ‘what to eat’ and diet).   

Hi. Yes I do know what you mean, it is a horrible feeling and especially when the shakiness and weakness comes aswell. I was convinced for ages that I've got some life threatening illness, think I've annoyed my doctor by constantly asking questions and wanting help. Oh I haven't managed to find the 3 other posts about what to eat, I'll try and look again

Normally you can rely on how you feel, I e whether it’s a dangerous illness or not.  But obviously with these stomach issues we have, you can’t.   I’m normally able to endure lots of pain .  I almost never ever take pain killers.  But with these stomach issues we all have :   I have ‘only moderate gastritis’  which feels like a life-threatening disease.   A relative who is 96 had bleeding gastric ulcers.  He never ever noticed anything.  He was happily eating and pigging our on food.  With some people the vagus nerve (in their stomach) doesn’t function properly, so they notice and have zero pain and zero symptoms.   But with us the vagus nerve is very active, gets easily aggravated (almost angry) and, thanks to the ‘gut/brain axis’ causes all these symptoms plus prevents us from being able to eat.   It’s crazy 😝!!

Tanya, in one of the other forums with same horrible symptoms, there were 4 people who had previously cancer,  1 of them had stage 4, all with chemotherapy (who then all recovered).  They said that was a walk in the park in comparison with this stomach stuff we all have.  Just imagine !!! An another individual who had previously a Cardiac Bypass and he said that was bad but not as horrible as these stomach issues.  That’s  why other people can’t understand how we feel.   Because - logically - it doesn’t make any sense.   Another relative said to  me “how dare you say this is worse than a flu?? I had a flu.  You don’t even have a flu.”  

Hi. Wow that is saying something! It certainly doesn't make any sense to feel like this it's mad. But a very horrible feeling. Just had the doctor on the phone telling me that I do have options to try and help but just don't feel that I'm being taken seriously. This morning it felt like something was stuck halfway down and i ended up being really sick but couldn't shift the feeling. When I had severe pneumonia I had trouble eating and food was getting stuck and I was scared that I was getting that again at first.

Hi LCat..I know what you mean about this stomach issue. It is horrible dealing with the stomach. I was diagnoised with chronic mild gastritis last year at the beginning of all this, and its been a battle. Now, i ve been having food sensitivities, heart palpitations, stomach palps, constipation... It seem as though everything is linked to my stomach. That is so true about the vagus nerves..As soon as i get bloated the heart palpitations starts, its like everything i eat just sits there. Two months ago i was able to eat anything i wanted but now my diet is veggie soup and water. Does your stomach feel bloated alot? Are you having bowel issues? I hope you start feeling better, i know what you re going through.

Wow.  That is an eye opener for sure!  

Tanya,  nobody could blame anybody worrying about their lungs (or their heart) when they experience these horrible symptoms.     It’s again the Vagus ( which means ‘wandering’ nerve).  Different branches of the same vagus nerve innervate many organs, also the lungs and the heart.   That’s  why this pain feels so similar whether it originates in your stomach, lungs or heart.   It s very hard  to tell the difference..... just from symptoms alone.   Not surprising that you were worried whether it was related to your lungs (even if they are in best condition).   How can we tell the difference if even our brains can’t tell the difference ?  I myself was made to believe for many months that I probably had a serious lung condition.   But there was nothing there.    It was the stomach.   I believe it’s beca use the pain stops you from breathing deeply (without you realising).... then you think  ‘why can’t I breathe’?  Then yo    can’t  help thinking  of bronchi or lungs.

Oh and Tanya, what did your doctor mean ‘you have options’?   

Hi. Sorry only just seen your message, the doctor said I have options and went on to talk about progesterone only, or coming off the pill altogether, and about trying different supplements to see if any of them help with the hot flushes and headaches mainly. I've given up on trying to get help with he stomach issues. Also felt like I was having problems with my heart because I had a pain which I was convinced was my heart but don't think it is just hurts under my chest on my ribs and feels heavy when I breathe. That's a new sensation to me and I'm not sure if it's connected with all my other symptoms. But the doctor said that she doesn't really know what to do apart from suggesting the progesterone

HI Tanya, 

I only saw this post from you today.  I’m totally convinced that your symptoms under your chest are also caused by those stomach problems.   I have exactly those same symptoms as well.  Years ago I was worried that it was my heart as the pain is similar to cardiac pain.  I was tested and my heart was fine.   It also feels like you can’t breathe.  It s caused again by the vagus nerve.  

Hi. So what causes this vagus nerve to cause all these problems, is it the menopause that triggers it? I woke up this morning covered in sweat and still getting one hot flush after the other and still got the pain in my chest and feels like it's into my ribs now aswell.

Hi, Tanya, and that is the problem !!! :  We’re not advanced at all in Internal Medicine .... they ‘don’t know’.  We’re quite advanced in surgery and engineering.  We can fly to the Moon and to Mars.  But - in comparison -chemically/ pharmacologically we’re in the Middle Ages.  Hoping I won’t bore you with this :  What we know re the Vagus Nerve is that there are ‘afferent’ fibres of the Vagus which feed information from various organs (also from the stomach)  back to the brain telling the brain ‘something vaguely in this area is wrong’ but without telling the brain what exactly is wrong.   As a reaction from the brain ....there are ‘efferent’ fibres going from the brain back to various organs and other areas in our body causing all these horrible symptoms via transmitters, hormones etc. and various other highly complex mechanisms.  But what actually causes initially this gastritis etc.  we have........ nobody knows....  unless the patient has something super nasty 🤢 like cancer etc...(.they can identify nasty conditions as the have tests for those).  But once they’ve excluded those nasties ...... there’s nothing they know ..... or can do ....to help us with this type of gastritis that we seem to have and these debilitating symptoms.   Even when you would say ‘I feel as if I’m dying’ ....the point always being made is ‘it’s not dangerous’ ..... Of course, they also have no idea how horrible this feels.   There seems to also very very little money going into this type of research ..... they don’t seem to care very much.  It’s  Gastro-Intestinal ..... not a sexy topic like ‘Flying to Mars’.  

Whether the menopause 100% actually physically triggers it ......I wouldn’t dare to analyse .  However I wonder whether the menopause, i e hormon / transmitter fluctuations may make it ‘noticeable’ and ‘much worse’.   There seem to be also men who suffer worse this unexplained gastritis and those symptoms (even though I haven’t yet found one who said he had hot flushes).  So I assume that ‘something went wrong for us plus those men in our stomachs’ (nobody knows what causes it ..... it could be anything  like e g post-infectious etc etc).  Then other factors cone in to male it few really horrible.   2/3 of people with these stomach/gut symptoms seem to be female.  You can analyse this ..... couldn’t you ?  It could very well be hormone related ..... therefore menopause related...... wouldn’t you think so?   And look you had all these chest pains which are clearly most likely from the upset stomach ..... and at the same time you have the hot flushes which are menopause symptoms.....  the fact that’s is at the same time ... says it all I believe.   It must be inter- connected.

As ‘Oh so very little’   is known in Internal Medicine’ and yet we have this problem we can hopefully help each other - at least a little bit -  analysing it as well.   I know analysing won’t help either but it helps to know you’re not alone.  And when you suffer sooo much you have a desire wanting to know at least ‘why’.

My thing is the constant fatigue shaky legs anxiety and just a VERY dark cloud over me ..... gosh if I had a wish .. it would be to rewind to the days I was feeling good ‘in my body ‘ I would appreciate it sooooo much now !

However for your stomach try Okra Pepscin it’s excellent for digestive issues and healed me once when I had a blockage . It does take time as it’s natural but works wonders ! 

Hi thank you for that information, it is really helpful to know abit more. You seem to know more than I do so I am truly grateful for your time telling me all that. I feel so achy and all these problems and was starting to despair that I'd never have any idea what it was(the stomach issues especially) so thank you

Hi thank you, I'll look into that. Also am trying to get something for the headaches and hot flushes. Would also be a miracle if I could get rid of all the aches, feel like my knees are giving in.