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Thanks so much for advice everyone.

CoachT you asked about gallbladder. I had a RUQ (right upper quadrant) ultrasound and my gallbladder appeared normal with confirmation of no gallstones. Nothing remarkable showed on my gallbladder. I forgot to mention gallbladder result in my earlier post b/c I have had so many tests performed over the past year.

The abnormal tests I have had are fatty liver (hepatic steatosis), high b12, slight bilirubin in urine one time (all other urine tests were normal), mild regurgitation in 2 heart valves, mild henial hernia in stomach, and a slight elevation of DHAP hormone. My GP and other doctors said these should not be causing the kind symptoms I have or really any major symptoms at all.

I also wanted to mention that I cannot take Tylenol or many OTC drugs now or really any medications at all. When I take something like Tylenol, I get upper abdomen pain, I also get the panic attack/impending sense of gloom/doom sensation like I am going to be sucked out of the Earth into the afterlife, and I have nerves firing all over my body. I feel intensely gloomy and sickly for days afterward. I had the same sort of sensations when I tried CBD oil to try to alleviate my pain. It is like my body is poisoned when I take any drugs and they just don't seem to process or metabolize in my body. I also want to mention my stools are not dark brown like they used to be but are now always clay colored as if there is no bile in them. They are especially light when I take any drugs/medications. My heptaologist did an in-person, physical test with my arms, hands, and reflexes to check for hepatic encephalophy and it was negative - I don't have the flapping hand/wrist tremors associated with this condition.

I am scheduled to have a liver fibroscan this month, a more in-depth look at my liver, and will have more hormones tested by my GP. I also want to have heavy metals tested. Perhaps exposure to some kind of toxic metal caused some of my problems.

I will look into CSS as it does fit alot of what I have gone through. Thanks for the information and links.

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Replies to "Thanks so much for advice everyone. CoachT you asked about gallbladder. I had a RUQ (right..."

That’s interesting regarding the sensitivity to medications. I have the same exact issue since my episodes started after surgery. I have been unable to take any medications other than ibuprofen, and even the slightest amount of caffeine sent me through the roof for the first two and a half months. On two occasions I tried to have a drink of alcohol, once to see if it would help and just the other day because I was offered a drink from a friend and was feeling pretty good at the time. On both occasions the single drink brought on the exact same feelings. My guess is this has to do with our nervous systems being in complete meltdown mode, and any change in sensation brought on by the meds, caffeine etc cause an overreaction and sends panic messages to the brain. That’s only a theory though. I’ve also had severe muscle cramps and spasms, as well as shooting pains and twitches. In my case, I’ve had the HIDA showing my gallbladder isn’t working much at all, the severely low b12, a high complement total and just the other day, anemia. The anemia is odd as it was borderline prior to starting b12 shots but has actually dropped quite a bit since taking the shots. The doctors suspected it was low due to the b12, so it is definitely surprising. I’m sorry you are dealing with all of these issues without an easily identifiable cause. I can definitely sympathize as I know how completely debilitating and consuming that they are. I am thinking that in my case, I have several things going on at once that have just raked havoc on my system. For instance, low b12 prior to being administered nitrous oxide probably caused my neurological symptoms (neurologists agree with this), while my daily morning nausea may well be from chronic gallbladder disease, and extreme fatigue from the anemia. As with your case, the question is what is the root cause? I think we have to keep pushing until we find out. Luckily I had a psychiatrist who encouraged me to keep pushing because he believed that my issues were medical and not psychological (after my original primary ran a blood test and CT scan, then told me it was psychological so good luck…). The bottom line is that we know our bodies and if you truly feel that something is not right, you need to keep pushing for answers and not get discouraged. I never gave much thought to my health prior to my experience with this, but I am really doing everything I can to not only look for answers, but to balance my body and optimize what I can influence to prepare my body for healing. I’d recommend you keep pushing as well, but also focus on stress reduction through massage, acupuncture, diet, light exercise, going for walks etc. After doing these things for three months, I do feel better despite my symptoms persisting.

You're very welcome. I'm glad you will educate yourself about CSS. What you describe sounds miserable. If no firm diagnosis occurs please keep this in your back pocket. I understand how awful a plethora of symptoms can be, and the affect it has on your mental state. Keep persevering. Will you check back with an update on how you are doing?