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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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My worst symptoms, need tips please

Discussion in 'Gastrointestinal and Urinary' started by Willhm, May 14, 2013.

  1. Domino

    Domino

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    There are many factors involved in this chronic illness. There are common symptoms, but the source of a symptom may not be of the same origin. While you may generally have ME/CFS, you may have manifested a co-morbidity, such as cholecystitis. Also, each sufferer has a unique genome that dictates co-morbidities, as well as, necessary dietary intervention. Have you had genetic testing and/or identified past/present infections?
    merylg likes this.
  2. Willhm

    Willhm

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    Sorry (both posters) I just have a lot of anxiety around all this and dread having tests etc. and wouldn't even know where to start. I just thought maybe someone had something similar to me and sorted it out or had some tips or ideas. I appreciate everyone this forum is suffering, it was just a bit of a punt and I hope it can be sorted. I jut feel a little anxious and unhappy about, I feel like its out of my control this symptom and I don't know how to prevent it.
  3. Domino

    Domino

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    There is potent antiemetic drug in the US called Zofran/ondansetron that is very effective. It is only to mask the symptom, until you are able to determine/address the underlying cause. After 12-years of severe nausea (that started at night and eventually was present 24/7) it is no longer a debilitating problem for me.
  4. Domino

    Domino

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    In my instance, I had acholecystitis. I have chronic pancreatitis with pancreatitic insufficiency. All three conditions are very hard to diagnose. I require prescription pancreatitic enzymes that help, some, with the nausea. Keep in mind, over-the-counter enzymes are not an effective intervention, as they are digested in the stomach and never reach the small intestine where they are supposed to act. My nausea became controlled after I started taking MAF 878. After 7-weeks my pain, imbalance, nausea gradually abated. I am no longer bedridden.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Willhm

    I agree, without tests to indicate the cause, just following others suggestions could make the problem worse. You eventually need to know the cause. What country are you in? If we know that someone can suggest tests that your doctor might run.

    Best wishes,
    Sushi
    ahimsa, Tristen and justy like this.
  6. Willhm

    Willhm

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    I am glad to hear things have improved a bit. I seem to have this dull pain in the area of my stomach, maybe a bit behind my lower ribcage? That seems to be present the day before I have a bad night with nausea.
  7. Willhm

    Willhm

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    I am in the UK, in England.
  8. Willhm

    Willhm

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    The pain itself is completely bearable, it's just it seems to be present along side a flare up.
  9. Domino

    Domino

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    RUQ pain (of whatever character) under the rib cage, nausea, and intermittent constipation is an indication of cholecystitis (gallbladder). Just because one doesn't have elevated liver enzymes, does not have an increased white blood cell count, doesn't have gallstones, has a normal ultrasound/HIDA scan/MRI does not mean your gallbladder is fine. An undiagnosed malfunctioning gall bladder is deadly. If it walks like a duck and quacks like a duck....its a duck...... I would follow-up with a GI specialist. Gall bladder problems can be a symptom of ME/CFS....
    Valentijn likes this.
  10. Jarod

    Jarod Senior Member

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    planet earth
    Hi there.

    You may just try an enima. Not fun, but can get you some quick results and help narrow down you problem without any risk.

    They sell little disposable plastic bottles at the local pharmacy that will do the trick.

    Maybe move on to the coffee enimas if that works.

    I suspect my illness originated with lyme disease. It can cause gall bladder and liver issues along with a bunch of other cognitive issues.

    The magnesium is the best way I've found to manage the constipation without doing the enimas.

    good luck!
  11. Shell

    Shell Senior Member

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    I was given oral Metoclopramide when during a truly hideous crash I had cyclical vomiting. The doc in A&E told me to always have some on hand - which I have - in case it happens again.
    There are other antiemetics out there.
    You really do need a doctors appointment Do you have someone who can arrange one and get you there and bring you back and help you say what needs saying?

    Like adreno says you need a truck load of tests but I wouldn't turn up with too many requests; doctors don't like that.
    Get the nausea sorted first and then start with tests.

    Do you have a dx of ME? Has anyone assessed you over the last four years?

    The other thing, unfortunately, is that anxiety can make nausea much worse. You could do with some anxiety management techniques. I wonder if there are some videos online with breathing and muscle relaxing exercises you can do lying on your bed. It would be worth exploring that before a doc gives you an anxiolytic with all it's bloomin' side effects.

    Fogbrain....I'll come back to you.
  12. Willhm

    Willhm

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    In regards to gallbladder and Lyme disease, I got my ME after glandular fever if that makes a difference? And also my parents are going to see a doctor today for me (I am too ill to attend) but have written them a letter explaining how I am so I will mention the gallbladder thing. Shell, sorry I don't know what do is, I have been seeing doctors on the NHS for the last four years and a few outside the NHS but with little improvement, I was diagnosed with ME after a bit less than a year of being ill I guess, I was diagnosed by an NHS doctor and I also diagnosed by another doctor outside the NHS. Something I realised from the night just had was I woke up and decided not to move at all and see if it didn't make me feel as sick (usually I wake up feeling completely sick so there is nothing I can do), and I didn't and managed to fall back to sleep and then in the morning around the time I would get up I moved my legs up a bit rather than being stretched out and stretched a bit myself which made me feel much worse pretty much straight away, but now once I am up a bit more I feel better, even though at night if I were to get up out of bed I would still feel awful.

    In terms of enimas would that just be more alleviating the constipation?

    And I am planning and have started to take action in regard to my anxiety but it has been a constant battle with it pretty much these four years but I am quietly confident. And I am sorry, what is an antiemetic?

    I apologise that I have so many question etc.

    Feel in no rush to answer or write at all if your are experiencing brain fog or anything, I don't want to be the reason any feels worse at all.
  13. caledonia

    caledonia

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    I think magnesium would be a simple and safe thing to try to alleviate the constipation, plus it would be calming for anxiety. Many of us have adrenal problems which cause the body to lose magnesium (and other electrolytes).

    I take magnesium glycinate powder, mix it with water and drink it down. Any form of magnesium is fine except for magnesium oxide which doesn't absorb well. So anything like magnesium taurate, magnesium citrate, etc. is fine.

    Gradually work up the amount over several days until your bowels are very loose (diarrhea), then back off a bit and that will be "your" dose. As an example, I was taking 1500mg (which is quite a large dose), divided into 4 doses throughout the day.

    I agree, it would be good to get a GI workup and see if there is anything serious or treatable (by NHS docs) going on. If not, then a holistic doc or naturopath might be helpful.
    justy likes this.
  14. Valentijn

    Valentijn Activity Level: 3

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    It does sound like the gallbladder area ... a bit to the right of center? Mine acted up a few weeks ago, and came with pain and nausea and acid reflux. Minimizing the amount of fats you eat for a while might help, at least in the evening. My doc also gave me the antacid Zantac for the nausea, which was surprisingly effective (I'd tried a different one earlier that didn't help). I think it's available over-the-counter in some countries.

    If you get a fever with the gallbladder symptoms, it can be due to an infection from a tear caused by passing gallstones, and requires immediate treatment.
  15. Jarod

    Jarod Senior Member

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    planet earth
    Nobody really knows what causes this illness for sure, but that is important information your onset seemed to coincide with Glandular fever.

    Constipation can give me strange stomach pains, give me headaches, fatigue, and maybe some more stuff I can;t remember. An enima can relieve most of that in a short period of time. Proper elimination is absolutely critical for my mood, and well being.

    If you decide to try the coffee enima, Need to use caffinated ground coffee, and not instant. Organic is better if you decide to splurge for that.

    I actually avoid drinking caffine though. I get spaced out and fatigued from drinking it. I attribute that to my liver issues. Caffine also causes anxiety in my situation, and eliminating caffine for a couple months was a big relief in the anxiety department. Very addiciting though and extremely hard to quit. I found my energy level is more stable without the caffine.

    Everybody is a little different, so if you understand your body you will be much better off.
  16. Shell

    Shell Senior Member

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    How did your parents get on at the GP?
    I hope s/he'll come out to the house and see you properly.

    You said "In terms of enemas..." If you were replying to me I didn't recommend enemas! I recommend an anti-emetic. That's a medicine to stop nausea and sickness.
    I do recommend magnesium.
    pure bicarbinate of soda with a little water can help reflux.

    I don't know the "modern" protocols for enemas but they shouldn't be taken unless there's serious impaction and then under strict medical supervision. There are different kinds for different needs but a doctor would have to have a proper look at you.

    A referral for a GI workup sounds like a very good idea. Your parents can ask for one.
    justy likes this.
  17. Misfit Toy

    Misfit Toy Senior Member

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    You need to know the cause. I have taken magnesium only to have it bring on nausea. Enemas are a good idea. For constipation, aloe Vera pills have really moved things along for me, even more than magnesium.

    Magnesium gives me cramps.

    But, it sounds like you need testing like others have said.
  18. Sherezade

    Sherezade Guest

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    About constipation, i can relate. I have suffered from it many years, even before i got sick. It's a family thing i guess, specially because in my family we follow the Atkins diet. Anyway, constipation got worse after i got sick, and i was tired of laxants, so, i found something in Amazon that solved my problem. I don't know if we are allowed to recommend a commercial product here, but if you are interested let me know and i will tell you by private message.

    I go twice a day now, without any problem. It's a huge relief.

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