terrible stomach ache, advice please - Hughes Syndrome A...

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terrible stomach ache, advice please

mully profile image
5 Replies

please can anyone offer advice, after eating i always feel swollen bloated and uncomfortable but the last 2 weeks eating has become agony swollen stomach, sweating, shaking, dizzy pain comes on 15mins after eating lasts 3 or 4 hours it's not stomach ulcer no burning or acid pain feel like i am going to pop , if i starve then no pain, all my blood tests are normal i have aps controlled with warfarin inr 3 to 4, I am worried GP thinks i am a hypochondriac what shall i do starve? help, love and best wishes to everyone thanks mully

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mully
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Manofmendip profile image
Manofmendip

Dear Mully

This type of problem is not unknown in APS patients and Prof Hughes says that it is due to insufficient blood supply to the stomach/duodenum.

However, if it is as bad as you say I think that you should seek medical advice, first, either through your GP or at A&E, telling them that you have APS.

Where are you from? Please set your location on your profile as it helps us to help you.

Keep us advised on your progress.

Best wishes.

Dave

MaryF profile image
MaryFAdministrator

Hi there, I was just about to answer in the same manner as above. Also some of us alongside this can have a gut that reacts very badly to gluten, and not necessarily be classed as coeliac... often goes with autoimmune problems and sometime hidden thryoid and adrenal problems also: bmj.com/content/345/bmj.e7982 and of course it is possible to have a mixture of all of this. You do need help with this, certainly. Mary F x

emmaj profile image
emmaj

Hi I had spates of this and it was put down to IBS after everything else was ruled out - another synmptom of APS quite broadly felt by a lot of us - only if everything else is ruled out will they say its IBS as an umbrella term really - not even bothering to find out what the cause of it is - be it APS or APS causing intolerance etc. I find taking ibuscoban is fantastic - ten minutes and the pain and cramping has gone. I would just check your ok to take it and not label it as IBS until youve been thoroughly checked out though as it only eases the pain and cramping not the cause x

in reply to emmaj

I agree with Professor Hughes.

I came to the same conclusion. With poor blood supply the digestive system which is quite sensitive cannot function correctly.  I suspect this is why food intolerance is common with Hughes Sufferers.  I suspect hiatus hernias are common too and can cause pain especially along with digestive system cramps.

I have had to give up all wheat like bread cereals biscuits etc and all milk and dairy.

I also have to eat cool meals and drink cool drinks no hot drinks.

I eat very little green veg (full of vitamin k which make my blood more sticky)

I have found exercise is good as long as it is not overdone, however the bloating is worse after exercise.  The long term benefits are good providing there is no chronic fatigue.

My bloating is worse at the end of the day probably made worse by gas due to poor digestion.

I don't take warfarin or heparin but take 80,000 ius serrapeptase and 2000fus of nattokinase twice a day. It was important not to take this while on other blood thinning meds like heparin(fragmin) or warfarin.

My bloating is not that painful now and I am much improved on this regime.(almost normal.

I also take Lycopene (Ateronon)

Which has been shown to soften hardened arteries ( atherosclerosis)

I suspect that with APS constantly attacking and inflaming blood vessel walls hardening of arterial walls may well be a problem

plus 3 1000mg triple strengt

omega 3, calcium magnesium and zinc, glucosamine and 10,000 ius of vitamin D

When I exercise I make sure I have plenty of isotonic drink and eat a banana or two.After exercise I eat protein and high GI (yes high GI like sugar) but no grains or veg.The high GI and protein is essential for muscle repair.

With this regime I suffer very little cramping after exercise.

I source them via the internet and all my supplements cost under 88 uk pounds a month.

All the supplements are high strength too so you won't find those in your chemist or health shops.

Yes I would rather not pay it but it works.

The alternative is not worth thinking about.

What price is my life worth?

I am not working because I am a carer for my wife.

So money is tight, but without this I could not support my wife.

Imagine how it was before I started taking the supplements.

Very bad I can assure you. In fact it was a nightmare situation.

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