What could possibly be causing all of these issues?

[Koolaidhighlights]

I know asking on a SM platform isn't the best idea but I am getting so fed up not getting anywhere with it all. I even took this list of symptoms to a private GP last week only for her to tell me it's all down to anxiety and to take antidepressants (this was after I had told her antidepressants have not helped with these issues). I genuinely no longer know what to do and am fed up to the back teeth feeling so off all of the time.

It's a long list and in retrospect I probably shouldn't have given such an exhaustive list to the private GP but I wanted to make the most of my £200, half hour appointment and thought that I may as well document all the things I'm going through.

Sorry, it is quite long winded but here goes,

Daily digestive issues:-
Nausea, lots of burping (belching as I type this), stomach pain, gas and acid
Gurgling up and down
Pain in chest and upper back from the gas/nausea/acid
Lots of gas and bloating
Feeling too nauseous to eat much at times
Nausea, burping and acid seem much worse mid cycle and just before period it eases
IBS - I have had this for almost 30 years but it's been much worse over the last 5 years:-
Bloating and lots of gas
Unpredictable bowels - can suddenly need to go at any time (I am getting scared to go out tbh)
Sometimes constipated (again, often mid cycle) and other times much looser or diarrhoea
Rectal pressure and discomfort although I do have adenomyosis and a very retorverted uterus

No amount of watching my diet, following the low fodmap diet ,as I have always done etc is helping anymore. I feel I could eat just dust and still have issues! No IBS meds have or are helping anymore and PPI's gave me awful diarrhoea.

Aching joints and muscles
Sore tongue
Tinnitus
TMJ disorder, bruxism and a very tight jaw which has resulted in worn down and chipped teeth
Pain and aching in shoulders, neck and up the back of head
Temperature issues - can not tolerate heat or cold and always have cold hands and feet
Itchy skin
Smell of cigarette smoke which is often in the second half of my cycle (that started 4 years ago)
Several times a month I have 'attacks' of what I can only describe as being similar to reactive hypoglycemia (sudden excessive tiredness, heavy eyes, weak and shaky feeling and the desire to drink coke or have a mars bar so something similar)

I have tried many things to help. Many different antidepressants over the years but they all made my IBS worse. I started Nortriptyline two days ago and am hoping this may help with the gut issues although my nausea is bad today.

I am 53 and still feel that I am having cycles and do track my symptoms, many of them do feel cyclical to me but it's hard to tell if I am still in peri or not as I haven't bled for 4 years due to a uterine ablation. I do feel very much that I am in a cycle still as many things feel worse 'mid cycle' and just before my 'period' which is usually no bleeding but pain (ablation apparently failed). I have tried HRT but it made the pain worse due to my adenomyosis and endometriosis.

All bloods come back as fine. A colonoscopy, gastroscope, pill camera endoscopy and bile acid malabsorption have all come back as ok.

I drink only water. I just can not tolerate alcohol at all so haven't drunk any for many years. I follow a low fodmap diet, avoid dairy, wheat, sugar, all artificial sweeteners and several other trigger foods. My diet is quiet restrictive and I have asked both my NHS and the private GP if I may possibly have some nutritional deficiencies but they both say they have no experience in this field but I can't afford any more private visits anywhere so stuck on that front.

I get out in nature every day even though I am exhausted but the dog needs walking, I stretch every night and have listened to gut directed hypnotherapy for months. I feel do more than a lot of people do for their health yet very little that I try makes me feel better.

Could anyone give me any tips how to bring my health back to where it once was? Could all these issues be related or am I just unlucky to be struggling with several things all at once? Or is it all in my head? (feel as though I am going crazy and round in circles all the time.

I honestly don't know what else to do.

I’m glad that your tests have all come back as normal, as frustrating as it is not getting the answers you long for.

Do you have a stressful life?

Have they tested you for helicobacter pylori?

What do your thyroid blood tests show? Have they tested T4 and TSH?

Ok, so firstly the main thing to do with ibs is work out what your stomach doesn’t like. Low fodmap works for many people but not everyone.

the quickest way is to go on a rice and banana diet and then slowly add stuff back in starting with really bland stuff.

if you can’t face that (and I couldn’t) then the most common things that cause problems are caffeine alcohol dairy citrus spices. So stop eating all of those for at least three week and see what happens.

then you can re-introduce one at a time and see if your bowel reacts.

more generally simethicone tablets are very good for controlling gas, and peppermint tablets help soothe. I have mint growing in my garden and have fresh mint tea instead of coffee these days.

sorry additional posting -

I have ibs have had for thirty years and recently had to try to work out a new trigger food as I was having the nausea and reflux issues - I managed to work out it was nightshade vegetables - tomatoes and peppers - so have cut them out.

like you I eat a very restricted diet and every now and then my body just goes “ha I think I’ll react to something new now!”

Have you had an early morning cortisol blood test for adrenal issues as my original symptoms were bloating and nausea

I can't lie and say my life has been easy over the last few years as my mum is in advanced stages of dementia and I see her several days a week. It kills me to see her suffer and I know it isn't helping but even on the days I don't see her and holidays etc I still feel so unwell.

I may be naive but I just can't see how stress like that can make me feel so unwell for so long.

All my gastroscope bisopy results including H pylori and coeliac etc came back as ok.

Go back and make them quadruple check for pancreatic cancer.
unfortunately a close relative of mine had all your first set of symptoms with additional complications from fibromyalgia etc.
the docs spent so long trying to diagnose the whole problem they missed the pancreatic cancer - despite the fact those symptoms match many of the digestive issues.
she too was told that she was all clear but in fact the cancer was very aggressive
i do not mean to scare you but we put far too much faith in the original ‘all clear’. Pancreatic cancer is very hard to treat if diagnosed late but can be operated on if caught early. I would always recommend pushing very hard on this one.
good luck x

Have you had your ferritin checked?

I recognize some of the symptoms and I think some are due to perimenopause, but when my iron was really low soms of these symptoms got worse.

I hope you find answers soon!

It'll be those bloody hormones, levels dropping off. I think this because you're describing my symptoms since starting estrogen blockers.

I went on a very basic diet with a dietitian a few years back. I have kept a food and symptoms diary for years and have worked out which foods make me very unwell but nothing else really stood out. It's weird because I could eat a food today and will feel unwell that day but a week later that same food could give me limited symptoms. I am careful with stacking etc but still struggle to see which foods are my enemy. I am starting to wonder if food is the issue at all?

I only drink water and haven't eaten dairy for 20 years. I have a very basic diet.

I do take simethicone and charcoal combined tablets, they help some days but not always. I do drink mint tea somethimes but have to be careful as it exacerbates my acid.

I have thought about going on the acid watchers diet. Actually come to think of it, I haven't eaten tomatoes for a while and have had a few in a salad the last few days and my upper guts have been worse.

They have come back as ok.

Long covid or ME/CFS

I've not had anything like this done.

Have you tried omeprazole or similar?

I am very concerned about this and would say this is my most biggest worry and why I paid last week to see a private GP. I specifically asked her about this and she completely dismissed me saying I would have light coloured stool, be jaundiced and have itchy etc if I had that. I tried to explain they are the late stage symptoms but she dismissed me.

I will have to go back to my GP but I am certain she will say the same thing.

It is something which is very much concerning me as I know this cancer has early symptoms very much like indigestion and acid etc.

Thank you. My ferritin is 60 which I am told is normal and within range.

I have tried PPI's but they gave me bad diarrhoea.

It could be the other way round of course. Feeling so unwell and rotten for so long takes its toll. So it isn't being stressed that's causing your symptoms, it is the symptoms which are causing your stress.

Pain in head/neck/shoulders
Digestive issues (GERD/constipation/diarrhoea)
Feeling too hot and cold
Aching joints

… all specifically make me think of Fibromyalgia. Check the NHS website symptoms

Can hormones create such havoc like that? I know many women get issues during perimenopause/menopause but I wasn't expecting to feel so awful and with so many issues going on.

Did you try going gluten free? Sorry if it’s been mentioned already.
I hope you get to the bottom of it soon 🤞🏼

Ive got Fibro and I thought this too. Ive got all the same symptoms.

OP I would say, try completely eliminating MSG and any and all artifical sweetners from your diet.it helped me an enormous amount.