Gastro problems and Anxiety/Stress finger pointing

My daughter is 15, she has had ME/CFS now for 6 years.

Gastro problems have always been a big part of her symptoms (stomach pain, lack of appetite, nausea, diarrhoea/cramps IBS type).

She's got swallowing problems (waiting for a Paediatric SALT appointment) and she will have a Calprotectin test when that arrives to rule out IBD, if anything turns up then she'll be referred on to a Gastro.

Heliocobacter Pylori has been ruled out

Unfortunately all this has meant referral to a Paediatrician again who thinks that the symptoms are all ME/CFS (they never use the term ME) related. He also has referred her to a child psychologist as the symptoms are similar to those with anxiety.
The Paediatric team at the hospital haven't been very good to say the least in the past, this Paediatrician does have a slightly better idea of CFS but still runs with the ideas of GET and psychology.

She's been prescribed omeprazole which has never worked in the past or ranitidine. He prescribed Buscopan when I mentioned it for stomach cramps, he did say there was no medicine and that symptoms would improve when the condition improves. These symptoms have waxed and waned in the past but recently not abating much.

She's always low during Winter months so I'm hoping as we head into Spring she'll improve.

Head bangingly frustrating that the finger always ends up pointing to the head. One reason was even put down by her CFS physiotherapist to anxiety about homework. Ugh!!!

Everytime we're lead to the path of these Paediatricians I always feel my daughter is in danger but left with little choice as Paediatric SALT need a referral from one and not GP. I'm glad the diarrhoea is being taken seriously enough to warrant further testing but not impressed with the thoughts about anxiety.

 

I should imagine if there's frustration and worry about homework, it's more the worry that she won't have the physical energy resources to complete it thanks to ME than about the actual homework itself.

To some people that might seem to be splitting hairs but there's a world of difference.

 

I had to convince the CFS physiotherapist she's had these symptoms in varying degrees for 6 years and they consistently continued after school was closed due to Covid-19, it was one lesson she did at school.

Completely agree, the brain fog is horrible for concentration/remembering and indeed the physical energy resources needed to complete homework.

 

If she suffers from indigestion and/or heartburn and/or acid reflux then perhaps she has low stomach acid ( hypochlorhydria ). It's very common, and lowering stomach acid further with PPIs like omeprazole, or drugs like ranitidine just makes the problem worse.

 

It's mainly nausea, lack of appetite, stomach pain after eating at times and cramps with diarrhoea but those seem to be the go to drugs despite saying they don't work.

 

Hi, I have very severe ME and have these same symptoms, I had IBS before developing ME and my stomach and nausea symptoms are worse.

Mainly, the nausea and lack of appetite I find get worse as ME symptoms are worse and the only things I have found which alleviate it are resting and therefore in general just trying to limit ME symptoms spiralling more out of control. I often have only liquid food, at the moment I’m only eating liquid food or plain yoghurt because I am having trouble eating due to other reasons but also am under a lot of stress. The only problem with this is you need to make sure you get in a lot of calories still eg Ensure so not really appropriate for everyone. there are medications for nausea eg metoclopramide and others, I think it’s worth asking for anti nausea meds specifically.

The medications I take are Mebeverine (for stomach spasms) and I have also found Nortriptyline at a low dose (tricyclics) to be helpful in those stomach symptoms - I know of others for whom tricyclics have stopped vomiting, reduced gastroparesis etc and it’s often prescribed for stomach issues. It helps my diahorrea somewhat. It would help more if I could increase the dose but I can’t. Both these drugs help me.

 

Sorry to hear your daughter is haveing a tough tim

Very frustrating that they just keep saying anxiety, i think they tend to go there with any female tbh. FWIW i do get bad diarrhoea when very stressed, I had it constant for the last month, but my anxiety diarrhoea is always entirely painless.

I also used to take mebeverine for cramping & found it very helpful when my IBS was bad yrs ago. It just improved on it's own & i am more anxious in the last few yrs than ever been.

 

She has seen a dietician, don't think she understood the condition very well so the advice was very basic, keeping a food diary was one. She takes pictures of her food on her phone as a record. I had been giving her Chocolate Complan in the morning and the Dietician advised against using that too often as it could fill her up and she'd be too full for better food or to just drink half.

Do you find you can eat better later on in the day - evening time? Just curious as she can eat well then just got so good in the morning/afternoon.

 

Thank you, will have to have another word with the Paediatrician about nausea meds, he recommended peppermint oil capsules. They all seem adverse to giving medication, all very well for them to say the symptoms will improve when the condition improves. Good idea re: lots of calories, Paediatrician had recommended Nutella which surprised me.

I'd say my daughter is fluctuating from moderate to severe, she can still go out and walk with a friend if she feels up to it, she's mostly housebound but her symptoms I would match with someone more severe and bed bound, I don't know, it's a weird illness. She doesn't vomit, it's mainly the diarrhoea and it the cramps hurt before and during, she says it's her worst symptom atm.

 

Thank you, it is, makes me worry they'll miss something. I don't understand why this isn't researched more, Gastro problems seem very common with people with ME/CFS.

 

My daughter has constant nausea but can't physically be sick. Her muscles conspire to prevent it which leaves her in a high alert state for hours - can't do keep breathing also due to muscle tightness so very tiring.

Swallowing is an issue too, sometimes real concentration is required - this is worse with PEM.
She seems to be in a catabolic state, running on protein. We try and make food as nutrient dense as possible , and do rely on a protein shake daily .
We use dairy free low carb protein shakes by
Nuzest . These seem to have a good taste and be less " claggy" than most.

Complain is pretty high carb and has dairy in it which may contribute to nausea for some.

I have had wider family members with parkinsons , diabetes, arthritis and cancer.
NHS dietician advice has been pretty awful for all. Focus on calorie intake without understanding the mechanisms of the conditions, and in the cass of type 2 diabetes, unaware that it is potentially reversible via diet.

 

Sorry your daughter is so ill. And so frustrating to keep going round and round without help.

I had IBS for a long time prior to ME.
With ME, the IBS pain was much, much worse. I've found multi-strain probiotics help both the GI pain, and the brain fog. As well, slippery elm powder in capsules helps the GI pain. I also have nausea - pills that help eliminate gas help me with this.

Hope you find some answers, and things that help!

 

So sorry to hear your daughter has so many digestive problems.

This will probably sound trite, but when I was pregnant and had morning sickness I found ginger was helpful. I used to have a ginger biscuit with my first cuppa tea in the morning, and while it wasn't completely helpful every day, it did seem to help.

Perhaps some form of ginger tea might help at least a little with nausea?

I had gut problems in 2016. Mainly constipation. It got so bad when we went to stay with our daughter in London I had to go to their local walk in. The doc there wasn't much help - just told me to use suppositories. I was left in so much discomfort next day or so that we drove to nearest A&E which was St Thomas' Hospital.

Was seen very fast. They found I had high CRP and gave me fast X-Ray which showed probable diverticulitis. Given both antibiotics and Cosmocol, and they contacted my GP back in Liverpool. Who arranged for further tests as well though can't remember names now.

I don't think your daughter's problems follow mine (let's face it, I'm not a doctor!), but just thought I'd put this here "just in case" it might be useful. Very much hope you get some help from the medical profession and your daughter finds some relief.

 

Are you on a Facebook Group for Parents of children with ME? They may have suggestions of suitable doctors to see.
Some adult docs will see youngsters from 16 yrs.

Hope you get some helpful advice soon.

Training for dietitians is fairly narrow, unfortunately.

 

I struggled with constant nausea and inability to maintain my weight for 20-odd years. It was actually the first symptom of my ME.

I got into a vicious cycle with it, partly because I couldn't access any medical advice at all. It started in the mid-70s, when everyone was talking about anorexia nervosa, and the only doctors who ever accepted that I didn't have this – ironically! – were the psychiatrists to whom I kept being referred. They all realised very quickly I had no symptoms of an eating disorder, but were unable able to anything but refer me back to my GP (who thought they were wrong). I wasn't even diagnosed with ME until over two decades later.

At the time I knew that eating high-fat food made the nausea worse, so I tended to eat a carb-based diet. This was much easier to digest and I got significantly less nausea. The trouble was that, for me at least, it was probably counterproductive. With hindsight I realised that too much carbohydrate had almost certainly been worsening the gastro problems, by making the ME worse.

The discovery was an accidental one. I'd started smoking in my teens, but by my late 20s I was very keen to give up. To succeed, I needed to avoid anything that made me crave cigarettes, which included sweet and starchy foods. I basically lived on uncooked food made up of salads and fruit, nibbled at throughout the day, and sometimes with a little bit of cooked chicken or a small handful of grated cheese sprinkled over it or a small slice of nutty, wholemeal bread. The sort of thing you'd eat if you were trying to lose a lot of weight really quickly.

My stomach symptoms and appetite improved so dramatically that, for a while, I actually thought the problems had been caused by smoking. Even though I was on such a low-calorie diet I gradually gained weight, and as the nausea and cramps faded away, I was able to eat much more. After a few months, confident I'd kicked the cigarettes, I drifted back to a diet including more carbs. Then I started losing weight again.

This tendency to shed weight if I ate too much sweet or starchy food went on until I was about 40. At that point I hit the middle-age switch, and it started affecting me 'normally' – i.e., I'd gain a bit of weight if I over-indulged instead of losing it.

I don't know whether any of this would work for anyone else, but it might be worth trying? Eating a low calorie, mostly raw diet when you're severely underweight and have stomach cramps, is completely counter-intuitive...but I suppose that's pretty typical of ME!

Over the years, I've talked to quite a few people whose onset was in childhood or teenage years, and who suffered with this problem. They all found that it eventually went away. The knowledge isn't very useful when you're worried silly about your child, and it certainly doesn't help them cope with the awful symptoms, but just knowing that there'll probably be an end to it at some point might offer a bit of hope, at least?


ETA: On reflection, it might be useful to add that the fact I ate mostly raw food almost certainly made no difference at all – it was that it was neither fat- nor carb-heavy. I lived alone in a bedsit with limited cooking facilities and was really unwell, so it was just easier to eat salads, fruit, and occasional tinned soup. If I'd had someone to cook for me, I'd probably have eaten much more hot food!