The 12th Invest in ME Conference, Part 1
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New label for my chronic stomach pain - anyone else have this one?

Discussion in 'Gastrointestinal and Urinary' started by mermaid, May 4, 2015.

  1. mermaid

    mermaid Senior Member

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    After enduring chronic repeated stomach pain for over 5 years, and despite trying all kinds of alternative diet cures, (ie food intolerance approach), probiotics/kefir, tests done via a private Dr, supplements, I finally went to the free (NHS in UK) GP (who I had told repeatedly of it previously) and asked her to refer me to a gastroenterologist to have myself checked out.

    I had told everyone for years that it was gastritis as I was diagnosed via endoscopy with that 11 years ago. I was staggered to be told by the Gastro that she thought I had NON ULCER (Functional) DYSPEPSIA as I had never heard of this despite having read a lot, and then found out that 60% of all stomach pain is diagnosed with this condition!!!

    Effectively it seems it is a mystery with about 7 possible explanations. If it is this common why do they not know by now? It's seen a a kind of IBS for the stomach - irritable stomach then....in my case it feels exactly like having ulcer pain, and my stomach swells up and I cannot wear normal sized trousers as it's too painful to do them up at times. Other times it calms down, and avoiding acidic foods seems to help just like with a real ulcer. I also have IBS and have to avoid another set of foods for that. Clearly stress plays a role, but sometimes I am under stress and I do not have it, though with this condition we are always under stress I feel and as it's so painful I really feel down about knowing it's not easy to deal with.

    Anyway, I have now had the endoscopy she ordered - there was a small hiatus hernia which is not thought significant (and I don't really have acid reflux now though I used to), and no other inflammation there.
    Also the ultrasound found a gallstone, but no changes in the gallbladder so I am taking care not to overdo the fats though I know it's important to have some, as I have had a few bad sessions which I think were triggered by a lot of fat in a roast dinner.

    Anyone else have this and find a good approach to dealing with it?
     
  2. PeterPositive

    PeterPositive Senior Member

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    I have dealt with similar problems in the past.
    It's generically called dyspepsia and it involves various symptoms, such as sense heaviness in the stomach, sense of fullness after eating a little bit etc... burping, burning, chest pain etc...

    Doctors have usually no clue, they call it idiopatic, meaning "from unknown causes" and they usually link it to stress and psychosomatic issues (whatever that means).

    At the time I saw several GI docs, did several tests (all inconclusive) and took all sorts of drugs that made things much worse.

    I improved significantly with the much frowned upon homeopathy. The fun part of this is that I mentioned this to my doc a few years later and he wasn't surprised. He just said "Oh good, you're not the first to report this sort of successes, I might have chosen the wrong profession". :wide-eyed: It wasn't sarcasm.
     
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  3. eafw

    eafw Senior Member

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    It is quite a common diagnosis. The "functional" bit means they can't see anything, so they shrug their shoulders and you're on your own basically.

    There's no one approach, some standard advice like regular smaller meals can help or not lying down after a big meal, but otherwise it really is whatever is best for you. Mostly try and avoid things that make it worse - could take a while to work out any patterns, there might not be any patterns. It's a real pain to deal with, unfortunately.
     
  4. mermaid

    mermaid Senior Member

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    Thank you @PeterPositive and @eafw
    I too am not keen on taking drugs for it, as I know they often use Proton Pump Inhibitors and these are not good used long term for the bones, and reduce acid in the stomach which I feel is there for a reason. I will take the odd pain killer now if I have a bad spell or use something like Gaviscon to soothe it. Also although I don't use homeopathy, my herbalist gives me various herbs like liquorice which seem to help it too, but if she changes the mix at all it can upset things again.

    Mine behaves just like an ulcer in that acidic foods irritate it, and my stomach swells too. So on a really bad day I have made up a mix of raw carrot and potato liquidised, and sipped it, and that miraculously calms it down. I was doing this because I thought it was gastritis but it seems to be the right treatment. Sometimes the pain can go on for days on end until I can get to the point of reversing it in some way.I cannot go more than 2 or 3 weeks now without getting a spell of it, but also I am better at managing it when it does happen.

    As you say though it is also linked with being psychosomatic, and with stress, anxiety and depression. Mine happens so regularly, and I cannot say it is worse or better when I am feeling good or bad - I just get it all the time, every few weeks for the past 5 years or so now at least.

    One of the reasons given for the Non Ulcer Dyspepsia is that the sensation in the first part of the intestine (duodenum) is altered in some way, and having had duodenitis diagnosed 11 years ago, I wonder if something happened neurologically due to the pain sensations I had at that time. Maybe it got sensitised in some way so that now it gets triggered by the tiniest thing. Due to this condition I was unable to take Low Dose Naltrexone as the pain inside was unbearable.
     
  5. PeterPositive

    PeterPositive Senior Member

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    A couple of good herbal options for soothing the stomach are slippery elm bark or marshmallow root. They are also found together in certain products. They work great for the irritation.

    Another product that I found helpful for the GI is zinc carnosine. In my case this one actually helped quite a bit.

    You may ask your naturopath what she thinks and if they could help you.

    cheers
     
  6. mermaid

    mermaid Senior Member

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    Thanks @PeterPositive
    Ah yes, I have been using Slippery Elm myself for quite a time and usually it helps me but it varies. Sometimes things seem to help and then become less helpful. I have heard that marshmallow root can help too, but only used it a little bit in the past.

    Funnily enough too I HAVE taken zinc carnosine as I saw it was very much recommended and took pots of it for several months, but it didn't seem to help me much. It may be that because I don't really have gastritis as such any more that it was less helpful.
     
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  7. PeterPositive

    PeterPositive Senior Member

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    Well technically if your stomach hurts and feels irritated it probably is gastritis (i.e inflammation of the stomach). There are many variations on the theme, and they may or may not respond to different treatments.

    Did you test for H.Pylori?
     
  8. mermaid

    mermaid Senior Member

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    @PeterPositive Ah but that's the odd thing with this condition (Non Ulcer Dyspepsia).
    Normally there is no inflammation to be seen, and apparently even when there is, it's not the main problem (ie I guess they get rid of it and there is still pain). Anyway, all I know is that I had an endoscopy 11 years ago and I DID have inflammation then in the stomach and the duodenum and was treated with PPIs for several years (which I now know is not needed for that long for gastritis).

    Because of the continuing pain I finally got round to having it checked out again last month via endoscopy and there is no inflammation to be seen, so it's not considered to be gastritis or duodenitis.

    I was checked for H Pylori 11 years ago when I had the endoscopy and it was negative. I had it rechecked by blood test more recently because of the continuing pain - negative again.

    I seem to get flare ups of this and maybe stress is a factor in them to some extent, but when I get it I can even be affected by pain taking my thyroid medication which I have taken for years with no problem. If I take it at these times on an empty stomach then I can feel the pain a few minutes after I have swallowed it. It is quite bizarre.
     
  9. PeterPositive

    PeterPositive Senior Member

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    @mermaid
    Yeah, I understand the frustration. I am having similar issues with my intestine which is constantly irritated but technically there's no inflammation.

    I don't think it's bizarre but doctors make it sound so, because your reports of pain and discomfort cannot be seen via the standard tests. But that doesn't mean the problem is not there.

    It's like not being able to hear a dog whistle... we can't hear it but dogs hear it indeed :)
     
  10. mermaid

    mermaid Senior Member

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    Well it's good to talk to someone else with similar problems @PeterPositive as up until now I have never encountered anyone on ME forums with these kinds of issues. For a number of years I went down the route of sorting out the standard problems re IBS with probiotics and the like, and I think I have that up to scratch now so I know this is different.

    The websites on it are very dismissive of the whole thing as if it's nothing much, but it's the main issue at the moment with my ME/CFS which messes with my mental health due to the pain. I 'get' that anxiety/depression can make it worse, but if you get any kind of pain then it's a bit of a vicious cycle.

    To be fair up until this last week, I had improved it a lot, and was managing it really well, with only short flare ups and it's possible that this latest flare is a response to my last trip away as it began the day I got back. I don't travel much as it's a struggle, and thankfully now will not until October.
     
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  11. justy

    justy Senior Member

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    So sorry to hear you are still struggling with this. I have had stomach/intestinal/chest pain for years off and on with no cause found. For me I have discovered recently I have Mast cell activation which can cuase terrible stomach problems an H2 blocker is helping with the terrible reflux, but still not always controlling it. I have also had 'gastritis' which was just awful and had to take the PPI's/ Now the immunologist wont let me take PPI's because they can cause itching. Also bee dx with EDS III - common in people with mast cell issues - an im not even that flexible!

    I thought recently my heartburn/reflux was under control but is now flaring up again very badly even with the meds. All I can say is I empathise - but I have no good suggestions.

    Take care
    Justy.xx
     
  12. mermaid

    mermaid Senior Member

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    Hello @justy and so sorry to hear of your extensive gastro issues that have not abated, as I do remember all the problems you have had with them over the years. I am so sorry to hear that you are in such pain with heartburn/reflux - really unpleasant. I did have that at one time, but I reckon mine was caused by PPI rebound acid actually and once I got off them I didn't have the same amount of problems.

    Your comment re Mast Cell activation was very helpful and sent me scurrying to the Google. I know I have looked this kind of thing up before, and also I know there is a long thread on here on the subject, but had never associated the stomach pain with it. To be honest I didn't know enough about it, but I see that in fact it's quite likely to be what I have, as there is a link with diarrhoea predominant IBS which I had for around 5 years in my early 20s, and also I had gastritis/duodenitis 11 years ago which was not explained by any normal reasons for it at the time (ie I did not have H Pylori). Also seems to link with hypothyroidism for some people too, which I have.

    The list of foods that you have to avoid are difficult to get your head round, and they are not fixed as people vary so much. I do have to avoid many of the foods on the list though - certainly all preservatives cause me stomach pain and that is on the list.

    I even see there is quite a bit on the subject on the NHS site (glory be they actually recognise it!) however I am guessing you were diagnosed by KDM on yours? I doubt the NHS would be keen to pursue this on me, and I am not sure I have the energy anyway to ask for another endoscopy with a biopsy next time which they didn't take of course as they would not think the extra expense of the lab time to be worth it!

    Mostly I have worked out a reasonable diet that is OK most of the time, but maybe I just have to put up with flares every now and then which perhaps relate to stress as that is a known trigger, or using foods that are an overload in some way.

    Interesting too that you have the EDS 111 diagnosis and that you are not very flexible - I in fact am mildly hypermobile, and I know of someone else who acquired that diagnosis after some years of the ME diagnosis. Was it KDM who diagnosed you with that too, or someone else?

    Thank you again for mentioning Mast Cells, as it has enabled me to look a bit deeper - online if not in reality. I suspect that there are many people out there with this problem that is not being acknowledged or checked up on.
     
  13. justy

    justy Senior Member

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    Will try and respond more extensively when time allows - youngest daughter needs me!

    NHS rheumy diagnosed EDSIII - now my eldest daughter needs to see her daughter about it as she is extremely mobile and flexible, multiple bone fractures a sa child (lax collagen?) and now has developed nut allergy last year at 21! youngest son has ankle pain, flat arches (is a symptom of edsiii) and broke out in hives recently for no reason. I am meeting many many many people now with EDS III AND mast cell activation AND M.E who also have Lyme and co - we are a right bunch!

    NHS immunologist who I saw privately in Cardiff dx mast cell activation on basis of symptoms and skin prick testing - despite being on double dose anti histamines for the itching I reacted to everything including negative control! BUT he wont discuss Mastocytosis or mast cell activation says they are rare and don't cause 'chronic fatigue' he was quite nasty actually. Been on a MAST FB forum for a while and apart from so far luckily no anaphylaxis I have very similar symptoms to all of them!

    KDM says 30% of his patients have EDS, and many with mast cell issues after years of chornic infections wrecking the immune system - he finds it commonly. He says should clear up once immune back on track. - could take a few years I imagine.

    Take care (my short post got long!)
    xxx
     
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  14. justy

    justy Senior Member

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    OOps my comment above was garbled! my eldest daughter needs to see her Dr!
     
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  15. mermaid

    mermaid Senior Member

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    Thanks @justy
    Really glad that you got some diagnoses at last, and one of them on the NHS for free!!! It is helpful for your son and daughter now that you have that info for them to work on too - so often we are in the dark about the reasons for things, and mainstream medicine is so slow to pick up on them and diagnose.

    I noticed that the NHS page on Mastocytosis stresses how rare it is, though they do say that Mast Cell Activation Syndrome can be difficult to diagnose especially when symptoms are mild or atypical. Looking further at one of the links re studies at the end of the NHS page article shows how recent the research is on the subject and we know how slow the NHS is to accept new studies - this one for example on diagnosing MCAS is just from 2010 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/

    Also any mention of ME/CFS is a negative trigger for them. At least you can do your own research on what helps you, but it would be helpful if NHS specialists were more supportive and open. My recent encounter with a Gastro showed me that she couldn't wait for me to get out of the door, and spoke so fast it was hard to get a word in edgeways, and not much chance for that was offered. I have however had mixed experiences with specialists and some have been outstanding - including one who helped me with Lichen Planus and told me about the probably link with autoimmunity which at the time I did not know.

    Anyway, it's an interesting subject which I will explore more. To be fair I don't have such severe symptoms as you do, but there are some indicators that it is a factor for me though maybe in a milder form but which can trigger into something worse at times with flares of hay fever or allergic rhinitis which I can manage to calm down - often using a herbal nasal spray. Also the stomach pain of course which is chronic and which flares up every couple of weeks or so and is definitely affected by certain foods.

    I see also that is believed now there may well be a link with autoimmunity and mast cell disorder and as I know I have 2 autoimmune disorders, and a previous one in pregnancy which is still showing some chronic change in my blood results (low platelets), this may be a connection for me regarding reasons for continuing problems. Apparently they have done some research into Oral Lichen Planus (which I have) and a proliferation of mast cells in the area in the mouth, but it seems to me that research is really quite new and hopefully more will be done in time! I have noticed that Oral Lichen Planus symptoms can be much worse under stress and with eating certain foods .......
     
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  16. kangaSue

    kangaSue Senior Member

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    Functional dyspepsia, non ulcer or any other kind is doctor speak for "Sorry, I don't have a clue mate", just a generic all encompassing diagnosis.

    Check out gastroparesis (GP), it's still a generic diagnosis as there are many conditions that have a GP connection. Fats and fibre usually exacerbate stomach symptoms with GP although studies into those with both GP and ME/CFS find liquids are more problematic for stomach emptying than solids.
     
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  17. mermaid

    mermaid Senior Member

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    @kangaSue Thank you - yes I agree with your first sentence!!

    I did look into gastroparesis a while back as I 'met' someone else on an ME forum who had this diagnosis. I have a history of IBS (40+yrs ago!) where in fact things in my stomach moved too quickly through (seemingly the opposite of gastroparesis). Over the years I then got more constipation, but I now think it was caused by a poorly treated thyroid condition. So... on the whole my gut motility seems quite good now, though spasms of pain do slow it down for sure.

    My feeling now about all this is that I probably have a number of things now going on, and in terms of eating, it's hard for me to manage them all together. A gallstone and hiatus hernia I think do give me some sensitivities to certain foods. Also I have I believe some bacterial overgrowth (SIBO) - not particularly serious but it gets out of control from time to time, if I increase my carbs too much, so I then have to cut back and treat it. I am essentially eating Paleo but I get pretty bored with it, and do lapse into some extra carbs which probably tip me over. Also some odd sensitivities to foods like cauliflower (high FODMAP re the IBS) mean I am restricted further.

    No wonder some people end up eating only a few foods!!
     
  18. chipmunk1

    chipmunk1 Senior Member

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  19. mermaid

    mermaid Senior Member

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    @chipmunk1 I can see that it is often interpreted in that way, but strictly speaking I am not sure that is true. From what I have read it means that they cannot find any physical cause or the cause is not known, which is not quite the same as saying it means 'you have emotional problems'.

    Looking at this site http://www.patient.co.uk/health/non-ulcer-functional-dyspepsia under What Causes Non-Ulcer Dyspepsia there are a number of theories given, and only one of the six given is of emotional origin. Even then it says that emotional issues such as anxiety and depression can make symptoms worse, but that does not necessarily mean they are the cause. One possibility is that the sensation in the stomach in one area is altered in some way - this I am assuming is neurological.
     
  20. chipmunk1

    chipmunk1 Senior Member

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    not always but *very* often. they are also trying not to say that it is all in your head because that would upset patients. Instead they use more socially acceptable metaphors like:"the brain controlling the nerves of the stomach". If you get SSRIs or are referred to Mind/Body treatments/counseling then you know what diagnosis you have no matter how they decide to call it.
     
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