Insane Fatigue

[Jordan R]

I developed "chronic fatigue syndrome" and prostatitis after a motorcycle accident 4 years ago (metal plates put into my pelvis)

My main problem is incredible fatigue that leaves me a shut-in.

I also have:

brain fog (can't read normally), bloating, muscle weakness, prostate inflammation, inability to empty bladder, depression, headaches/fevers, bright red blood in my stool (sometimes), constipation/diarrhea, internal sleep clock out of sync, swollen armpits, aversion to dairy, etc... (usual stuff)

I am currently taking: riddlin, Doxycycline Hyclate (for CFS and prostate) and citalopram. I started all these medication long after my symptoms developed.

I noticed something that baffled my CFS doctor. I go through the same experience almost everyday:

It starts a few hours after I wake up with an hour of intense fatigue and a feeling that my food is being digested (bloating, feeling of movement in my intestine). I usually spend this time in bed and can usually fall asleep for most of it.

Then amazingly, for about 30 minutes, my fatigue goes away almost completely. My brain fog also disappears (I can read, have a conversation, sex) and I have a permanent smile on my face. It is almost euphoric.

Then like clockwork, I will have a bowel movement.

Unfourtunately, about 5 minutes after my bowel movement, my wonderful awakeness is over and deep fatigue begins extremely quickly... almost to the point where you have to sit down to avoid fainting. The initial shock wears off but I remain tired the rest of the day.

Have you ever heard of this? Intense fatigue > deep awakeness > bowel movement > Intense fatigue > repeat daily. All of this happening within an hour.

No one I asked ever heard of someone having intense fatigue both before AND after a bowel movement. Its baffling!

Any ideas you have would be much appreciated!

Thanx!

[MECG]

I have been suffering from CFS, FMS and Sjogren's Syndrome for years now.  Last January I began taking Provigil.  It has greatly increased my energy level and helps with the brain fog.  It has changed my life.  Ask your doctor to see if you can take this.  I have suggested this to other suffers and it has done wonders for them as well.  It is actually a drug for people with Narcolepsy.Last year, I was not capable of reading, let alone responding to anything.

Hope this helps.

[gior]

Dear Jordan,

I have exactly the same symptoms that you have. It makes me crazy because I can no longer enjoy my life or take control of anything. I dread going to the bathroom. I also feel that my intestines get into a knot in certain places after going to the bathroom. This is relieved by taking some Xanax. I very often experience burning stool and I get very hot with a lot of inflammation. I have been to many many gastros with no help for many years.

I believe that I have a parasite called Entamoeba histolytica. There has been much controversy as to whether or not this is indeed the problem but I had one doctor who diagnosed it and another who did a test that found antigens against E. histolytica, and still another parasitologist that found charcot-leyden crytals, that while in and of itself does not necessarily mean E. histolytica, you will have these crystals if you do have amoeba or other parasites. The other significant evidence, as far as I'm concerned, is that anti-parasitic drugs have helped relieve my symtoms. For me, that is empirical evidence that there is indeed this parasite. Unfortunately they always return after several weeks after treatment.

Mainstream gastros seem to consistently  negate the possibility that this is what I am suffering from since it has not been recovered in any stool tests, only with a direct rectal swab by the parasitologist. Research has shown that the parasite very rarely shows up in stool tests and that most lab techs do not recognize it in the west because they have not been trained to look for it, as it is thought to be only a third-world disease. And gastros believe that the anti-parasitic drugs resolve the problem. Years ago, my parasitologist, who has since retired, had contended that you never really get cured of this. I didn't want to believe that but it has been 15 years hence and I am sorry to say that I am still suffering despite many anti-parasitic drugs. I have found that tetracycline does help but it is not a cure. Recently I had developed antibiotic-induced diarrhea and was finally able to resolve it by taking mega-doses of probiotics. But still my stool, while having form, is mushy, and all my other symptoms are still with me. I eat raw garlic which seems to give some relief.

Over the years I have done extensive research regarding this parasite and how it is difficult to diagnose and that doctors are now using drug cocktails to try and eradicate it and other similar parasites....with varying sucess. I think that over the years I have taken so many of these drugs that the organism seems to have become resistant and I have become so weakened that the side-effects of the drugs are barely tolerable. I still try to maintain hope.

Here is a website that you may find informative:http://www.badbugs.org/

There you will find info on some parasites and testing methods and treatments. It's worth a try to see if this might be your problem and you may find a cure. Finding an accomodating, cooperative, and knowledgeable doctor is a difficult task. If you are in NY, I recoomend Dr. Leo Galland, and a parasitiologist Dr. Kevin Cahill.

Best of luck.
You can email me at: ***@****

gior

[Suziepie20]

Have you been checked for Lyme Disease?  I know someone that was in the same situation.  Her first Lyme test came back negative.  Six months later she saw a specialist that retested and she has Lyme Disease.  She was so fatigued that she couldn't go to school and slept most of the time.

[hammi04]

I have CFS due to fibromyalgia.  I found that taking herbal supplements and vitamins help me.  I started taking a nutritional product called relive and found it gave me much needed energy.  also ginsing and green tea.  A lot of your symptoms sounds like fibromyalgia maybe you should check into this.

[ckg]

hey jordan,

when are you dosing your medications?  are you eating when you are taking any of them?

how much water are you drinking?  have you had a series of LFT and/or a HgA1C lately?  

[astros18]

Fibromyalgia and CFS are many times precipitated by a life changing event or times of extreme stress such as a car accident. Mine came about as well because of a car accident. I wonder if you seeked help from chiropractic or physical therapy. A whole body detox is definitely called for. There is a correlation between systemic yeast and CFS. I am not entirely sure why in the world you are taking Ritalin especially if it's not making much difference. I encourage you to look into some natural solutions for your CFS. There is a guafenesin protocal which is pretty strict. You must eliminate all salycilic acids from your life, but the thing that helps me most is Fungal Defense by Garden of Life and keeping my colon cleansed. Feel better. There are solutions out there.

[yoshi]

h

[ozark]

have you had your heart checked out....there's a vagal reaction with bms that can cause your heart to slow down which may make you tired....dont know but just thought i'd mention it   good luck

[Jordan R]

I try to be good and eat tuna, vegitables, etc.. It has some positive effect, but not much. I do take ritilan, 20mg of fast acting 3 times a day. (maximum allowed). My digestive/fatigue problems started prior to my ritilan usage, and the symptoms occure regadless if I have taken my ritilan that day (almost always do).

Hope this helps and thanx a lot! I know this is a weird one.

[ckg]

a couple things ...

- are you taking the long-acting form of Ritalin (such as Concerta or Ritalin LA?) and at what dose?  If not, a switch to the long-acting formulations might be very helpful - or an increase in dose and LA formulation might be the most helpful.  Conversely, I have seen patients who are on stimulant drugs have a reactive approach - and actually feel sleepy with them.  

- are you able to take the doxycycline HCl at night?  this could help with sleeping at night and take away the sedation during the day?

hope this helps -- let me know what your thoughts are.  Chronic Fatigue Syndrome is one of the areas of research that I'm very interested in.

-ckg

[yoshi]

what do you eat??

[Kevin Pho, MD]

Unfortunately, I am not aware of a specific condition that matches your symptoms.  It is possible that the changes in the blood flow (i.e. going to the stomach while digesting) can lead to fluctuations in alertness and fatigue.  

I'm sure that your physician has already considered these tests before settling on a CFS diagnosis, things like a blood count, vitamin b-12 level, thyroid testing, mononucleosis and a metabolic panel should all be done to ensure there are no other causes for the fatigue.

An endoscopy should also be considered to evaluate the blood in the stool.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
http://www.straightfromthedoc.com