Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Desperate for help:

Discussion in 'General Symptoms' started by rodneydeeeee, Sep 24, 2013.

  1. rodneydeeeee


    Problems started when I was 13. Bad digestive issues.
    Bouts of diarrhea started occasionally, that moved into weekly urgency, that ultimately led to daily. I started mapping my routes due to digestive issues.
    I’ve always woken up tired and unrested.
    Digestive issues continued to get worse. 21 years old, became very sick and went for scope. IBS. Many hospital trips due to severe stomach/pelvic sourness. Eventually Milk of Mag helped the sourness, and took it daily as the pain crumbled me. Still was very sick. 24, went for another scope. Diagnosed with colitis. Soon, D became severe constipation. I stopped going but every couple of days. I made diet changes, went on GAPS and SCD. Occasional pain came but not terrible.
    27. Very sick all the time, blood daily in stools, different laxatives, pain, tired, crappy. Another scope, another diagnosis of bad colitis. 3 day hospital stay.
    28, pains are incredible. Everywhere, severely tired. Daily bowel movement but never relieving and always blood. I’d give ANYTHING to be back where I was when my problems first originated. They are nothing compared to now.

    Over the past couple years, my symptoms are:
    · Severe tiredness. Hard to stay awaking during the day. No where near rested when awoken.
    · Very stiff when awoken. Hard to move, extremely sore like I have been run over.
    · Hurt for weeks after physical activity (this only started over past few months)
    · Severe constipation (I go daily, but strain)
    · Extremely stiff, cracky neck 24/7. Constant cracking no matter what
    · Breathing issues, losing air or heartbeats
    · Vericose and painful veins. Becoming purple and broken also.
    · Painful fingers, hands and feet. Fingers developing arthritis
    · Arm pain for no reason
    · Extremely cold hands and feet. Always, no matter what
    · Low temps, 95s-96’s, occasionally high 97’s
    · Hurt chest, stomach, legs
    · Shoulder pain, all over
    · Stomach cramping, bloated, full feeling
    · Nauseated
    · Very nervous (shake and tremble for no reason)
    · Frequent infections, genital herpes outbreaks, 2x monthly
    · Lightheaded, dizzy daily ALL DAY!
    · Dizzy, burning when urinating or moving bowels
    · Very miserable, irritable
    · Dry feeling, dry skin, dry scalp
    · Rashes on face
    · Terrible dark eyes
    · Eye trouble (blurry, dry, floaters)
    · Lower and upper back pain
    · Numbness
    · Swallowing trouble although not major
    · Very stinky body odor even when not doing anything
    · Rib pain, chest pain
    · Kidney stones
    · Cloudy and weird urine
    · No motivation
    · Always COLD or HOT, mostly COLD
    · Very easy bruising, bad healing
    · Overall terrible and sick
    · Depressed
    · Always jittering and the need to cringe
    · Hard to hold my arms up for any period of time
    · Kidney pain
    · Pregnenolone has seemed to help more than anything over past 3 days
    · Burning and painful toes
    · Elbow pain
    · Bladder and pelvic discomfort
    · Pain before BMs and Urination
    · Out of breath easy

    · Throat pain
  2. Crux

    Crux Senior Member

    Hi rodneydeeeee;

    This is a long painful list of symptoms, so I think there could be a malabsorption/malnutrition situation.

    Many of the symptoms could be B12 deficiency, so looking into some of the methylation protocols would be a good idea. ( numbness, burning pain, breathlessness,vision problems,dizziness,moods)

    Have you had a thyroid work up? TSH, free T3, free T4 ( some low thyroid symptoms and low B12 symptoms are alike : shortness of breath, fatigue, skin problems, coldness, low body temp.) Constipation can be from low thyroid function.

    Magnesium and potassium can help the constipation. There are gentler forms of magnesium than MoM, such as magnesium glycinate, citrate,gluconate, etc.

    Some bleeding problems can be from low B12, but also low iron.

    Some people have improved kidney stones with : magnesium, potassium, and some, ( not alot ), B6.
  3. rodneydeeeee


    Thanks for the reply: My B12 is normal, up in the 700 range. I also have had a thyroid workup, and only my Reverse T3 was bad. In any event, temps and pulse are consistently low, so I decided to try supplementing with T3 anyways (and NDT). I still take it, but have noticed no difference at all. My sluggish bowels seem to be at the heart of my problem and NOTHING helps it. Not laxatives, enemas, coffee, etc. It's debiliating. I have Mag Glycinate, that I use daily, but again, does nothing at all.
  4. Crux

    Crux Senior Member

    A B12 of 700 would be low for me. I have to keep mine above 3000 to prevent nerve damage.
    Potassium can also help constipation. ( I take about 2000-2500 mgs. daily of potassium gluconate, in divided doses.)
    Some people prefer potassium citrate, or potassium chloride.
  5. peggy-sue


    What about something really gentle such as psyllium husk for the constipation?
    It's just soluble fibre, it will soften your stools by adding water to their bulk.
    It can be bought OTC as Fybogel, but that contains artificial flavourings and aspartame, so best avoided.
  6. Marlène

    Marlène Senior Member

    Edegem, Belgium
    Obviously, you don't absorb any nutrients if your bowels don't function properly.
    A friend of mine had to put her feet on a small increase when she went to the toilet to retrain her muscles. It helped after a while. this gives you an idea:

    Have you been tested for chlamydia pneumonia? It can explain your painful arms, rib/chest pain and breathlesness.

    I would go for a Lyme test if you trouble swallowing and bartonella if your feet are burning.

    The body smell has something to do with your adrenals taht are out of whack and fluctuating. It can explain your kidney pain eventually.

    Dark eyes and dark urine often go together. You might not drink enough or need to see a doctor. Anyway, you need to rule out any other causes.

    The body temperature can be restored with neural therapy. I needed just 2 sessions with a few injections of a local anesthetic called procaine to have a normal body temperature again. Before I was a fish. I apparently needed some input in my connective tissue.
  7. rodneydeeeee


    Interesting you mentioned Procaine cause someone else mentioned that as well.
  8. lastgasp

    lastgasp Guest

    Hope you find something that helps as it sounds miserable -- sounds like they should be doing more to find the cause of the colitis and in supplementing nutrients.
  9. lastgasp

    lastgasp Guest

  10. rodneydeeeee


    I really wish I could find something to help with the severe fatigue, nervous jitters and foggy/dizziness feeling.
  11. Shell

    Shell Senior Member

    I wonder if you got the pain under control if that would help other things. Pain management is always trial and error as we tend to be sensitive to so many drugs but low doses of drugs like Amitriptyline or nortryptyline help a lot of us. Others do well on Gaberpentin.
    I've found since getting the pain down to managable levels the fatigue is more managable (and the cyclical vomiting doesn't happen).
    Because we have a very complicated disease that attacks our entire body we can get bogged down in the "all of it". Choose one thing that could have a knock on effect such as pain or sleep and start there.
    Trying to get at the whole thing is overwhelming and doctors won't listen unless you have two little things to start with. Shameful as that is.
  12. caledonia


    Cincinnati, OH, USA
    Hi rodneydeeeee. The gut seems to be at the root of your problems, and everything else could stem from that due to malabsorption. I suggesting getting some stool testing done and, if indicated, doing a 4R gut rebuilding program. You could have a parasite, h. pylori, etc. which needs to be killed off. None of the treatments you have described would do that. I have a link in my signature to the 4R program, what tests to take, etc.

    A functional medicine doc, or naturopath or holistic doc would be the best to help you with this kind of program.

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