stomach problems, like some feedback on this please

Discussion in 'Fibromyalgia Main Forum' started by tansy, Apr 29, 2003.

  1. tansy

    tansy New Member

    In case it's of relevance will say illness started as a result of absessed tooth root being pushed through bone and left behind. Due to circumstances under which this happened there was a delay in antibiotic treatmeny. Had two courses
    of ABs which did no good, third helped a bit - herx symptoms.

    Finally surgery was done but I had a virus at the time. Terrible aftermath took 3 months to improve at all and after that - well you know the story.

    Now have lots of mouth, throat (always red and tonsils enlarged), sinus, and stomach problems. These vary in degree but never really go away.

    Tried digestive enzymes but think betaine hydrochloride in them is causing pain.

    Often have pain after eating, though avoid bad foods. Nausea presents too, this form of nausea clears with food but comes back again.

    Mouth and tongue alway sore, sharp edges of food easily damages tissue then get pain, redness and inflammation.

    If I eat crisps, or any crunchy food, sharp edges not only hurt mouth but stomach as well.

    Used to have a lot (less now) of gall bladder type pain. Had untrasound done 20 years ago, was told no stones; conclusion - virus had caused inflammation in ducts from liver to gall blader.

    Get heartburn still but less than in past, told it was due to a weak sphincter ie aligned to muscle weakness generally.

    Sometimes when taking my supps I get pain when they hit my stomach even though I drink loads of water and they immediately follow a meal.

    Pain like the sensation of burnt stomach from hot foods very exagerated now, have to let meal cool down a bit.


    1 Could this be logically linked to microbes now being found in CFS/FM patients?

    2 Could heliobacter be involved?

    Any ideas, your experiences in these areas, or useful info would really be appreciated.

    Thanks for reading all of this, tried to keep it as short as possible but realise it is a bit long.

    Cheers, Tansy
    [This Message was Edited on 04/29/2003]
    [This Message was Edited on 04/29/2003]
  2. MemoryLane

    MemoryLane Member

    I wonder if you contracted a chronic strep or staph infection. Sometimes these are resistant to most antibiotics and you have to be tested for which ones they are responsive to.

    Also, with the severe infection you had - your toothbrush could be the simple culprit - you may be reinfecting yourself each time you use it and perpetuating the problem.

    One thing I learned, when you have had a severe mouth or throat infection, throw out your toothbrush and get a new one.

    Hope this helps,
  3. tansy

    tansy New Member

    but comments on staph/strep infections helpful.

    There was a topic bringing up the possibility of these illnesses being contagious so this started a new line of thinking.

    Whatever this is I am sure it's effecting my son. He too is left with some similar problems.

    He's 90% better but life is really getting him down, he's got very stressed and overwhelmed because his body can't keep up with what he's attempting to do. His year at university, with a work placement, went down the pan recently. His placement was at a naval establishment. The war in Iraq put paid to it and the powers that be won't allow him to find another, it has to be somewhere assigned by a national scheme. So here he is run down, exhausted, broke, and the last six months of struggle wasted; well that's how he sees it. Oh and his girlfriend dumped him.

    He's at long last agreed to sort out his gut problems with probiotics etc, but like me his throat and so on are never right.

    Sounds as if it would be worth getting a throat swab done.

    My son actually had a real "nasty" picked up through a throat swab when he was at the height of his illness so I'll get him to find out what that one was.

    Thanks Memorylane

    [This Message was Edited on 04/29/2003]
  4. MemoryLane

    MemoryLane Member

    and learned that mucous membranes can become diseased like any other part of the body. An oral surgeon can perform a tissue biopsy from your mouth to determine if a problem of this nature exists. It could be viral, bacterial or fungal in nature and since the stomach and esophagus also have mucous membranes, well as the intestine, the disease can spread to these areas.

    Keep us posted,

  5. tansy

    tansy New Member

    Do have candida problems which keep cropping up, but have been using meds for a while and all the worst sypmtoms I usually get are now are gone. However, the lozenges did really hurt my stomach, even though mouth and throat were ok.

    My worst flare ups/relapses are preceeded by very sore throats and swollwen neck glands.

    Will discuss with GP (PCP) about referral. Because of what happened to me 15-16 years ago, at the hospital where all my NHS (ie funded) referrals go, I frequently have problems. I'm one of the "black" areas for CFS/FM hospital wise but at least the eye specialist I saw was very different.

    GP tried to get round this problem by out of area referrals but they were turned down, all hospitals now have to cut down their waiting lists. According to the NHS rules I can see a specialist outside the area because there is no one locally, but in practice this does not work unless a funding contract has been set up.

    It's at times like this I get very angry. When the dental thing went wrong, the dentist not only went against every protocol but did so in the worst way possible. The following months were a catalogue of delays, denials, none of the suitably qualified willing to take on my case and sort it etc

    Then 15-16 years ago even worse happened. Now it's difficult to get anyone to look into aspects of my case locally. Soon I'll go back to challenging it all again, but its really difficult when you are ill and we can't get proper access to records and test results - a lot of them just disappeared.

    Oh dear vented again when all I'm asking for is help.



  6. tansy

    tansy New Member

    Thanks for your input.

    Actually your comments illustrate my current fustrations.

    Due to my past history and how much of this is "iotrogenic" polite term for what really happened, I've been left to deal with everything for over 15 years now (following 2nd bout of disasters) I got dropped like a red hot brick.

    My story is one of those ongoing nightmares that will eventually be highly embarassing to NHS. In the meantime got to sort stuff out but having problems with local hospital because of what's gone on in past.

    Do see good GP (PCP) now but her practice partner is my offical doc so have to tread carefully - though now in a position to speed things up. Difficult to change in UK at moment, they can take patients off their list for any reason and most good GPs cannot take on any new patients. So have to make most of current situation.

    Saw a GI specialist 20 years ago privately, he commented on gut symptoms but was more concerned about what had then been diagnosed as polyneuritis.

    Do have problems in bowel and small area of large colon too but they are different, possible cause was picked up and treated with alternatives to drugs by clinincal ecologist years ago - saved me from surgery at the time.

    Now that current protocal is helping more generalised gut symptoms, problems in these two areas have been highlighted.

    Need as much info as possible before bringing this up with GP hence this post.


    [This Message was Edited on 04/30/2003]
  7. MtnDews

    MtnDews New Member

    Tansy, you said, "Saw a GI specialist 20 years ago privately, he commented on gut symptoms but was more concerned about what had then been diagnosed as polyneuritis." When I looked up Polyneuritis,Gullian Barre came up. My aunt had that...all this stuff must be related somehow.

    I'm having many of the stomach problems that you mentioned. HUGE sore in my mouth the other week. That's over, thank goodness and now I feel nausous all the time. Went to the dr yesterday and he supects an ulcer. That would make sense. And wouldn't it be great to have something to explain the fatigue and to be rid of it!
  8. pinkquartz

    pinkquartz New Member

    i can't comment on thebulk of your trouble its all going over my very tired brain,,.... But i did mean to post a reply the other day when i saw you say you had a sore stomach after taking the digestive enzymes...well this happens to me...quite a lot and i have had a stomach ulcer before,..and its not a good sign.
    as soon as it hurts i stop taking them.
    i haven't yet sorted out a longterm solution, though i do take powdered slippery elm powder to soothe and it does help.

    take care
  9. tansy

    tansy New Member

    I'd love to get rid of the fatigue, malaise, and cognitive impairments, the other problems I could deal with but these just make everything so difficult.

    Did suspect Guillaine Barre or MS because neurological symptoms kicked in so fast and were pretty significant, but I'm told it's just in my mind or the CFS depending upon which doctor I saw.

    Have decided to insist upon seeing a neurologist on the grounds that I need to talk to someone in that field and hope my GP (PCP) can pick someone without an attitude to this DD.

    Will also ask for stomach symptoms to be sorted out, not even sure they're related to CFS/FM but it would be great to get rid of them.

    Just a few pieces of this massive jigsaw seem to be fitting together, that's what we all need - some insight and helpful treatments.

    Thank you so much for your input.


    [This Message was Edited on 04/30/2003]
  10. tansy

    tansy New Member

    but in all honesty less frightening than many of the things I have to put up with. It's just one of those symptoms that gnaw at you and add to the general unwellness. I'm a real wimp over nausea though so that bit does get me down.

    I tried slippery elm but had real problems, it's now on my substances to avoid list.

    Found one upside to this though. Cannot slump forward because it aggravates the pain so have to work at being upright. The cervical and lumbar areas of my spine have got really bad over the years. A doc found my thoracic area to be hypermobile, this was 18 years ago; anyway having to work at keeping the stomach pain at bay has helped keep that area a lot better than the rest. Still get loads of spasms though.


    [This Message was Edited on 04/30/2003]
  11. desperation

    desperation New Member

    It sounds like you would benefit from going on the gastroenterology forums. Give them a go, you may get a lot of specialized help. You can talk to a doctor online too.
    Hope this helps
  12. tansy

    tansy New Member

    I will do that.

    Have been following up other suggestions made using search engines, so I feel I need to do a bit more research and then talk to my GP (PCP).

    She's great but it's a real problem getting the right referral in this area, little expceptance and even where they do accept CFS their understanding of it is way off the mark. FM has even less recognition and acceptance in the UK.

    Also the past bungles have made it even more difficult for me, so my GP and I have to discuss ways of getting around this.

    I do know that she will listen to what I have to say and take it seriously. Thank goodness I finally discovered her.

    If she can deal with it herself then there will be no problems; trouble is there is a limit on what tests she can access, others have to go through a hospital specialist.

    You'd think by now the medical profession would have got its act together.



    [This Message was Edited on 05/01/2003]