I developed "chronic fatigue syndrome" and prostatitis after a motorcycle accident 4 years ago (metal plates put into my
pelvisCancer - renal pelvis or ureter
Nerve supply to the pelvis
Pelvic laparoscopy
Pelvis x-ray)
My main problem is incredible fatigue that leaves me a shut-in.
I also have:
brain fog (can't read normally), bloating, muscle
weaknessWeakness, prostate inflammation, inability to empty bladder, depression, headaches/fevers,
brightBright beginnings red blood in my stool (sometimes), constipation/diarrhea, internal sleep clock out of sync,
swollenSwollen glands armpitsArmpit lump, aversion to dairy, etc... (usual stuff)
I am currently taking: riddlin,
DoxycyclineDoxycycline
Doxycycline hyclate
Doxycycline monohydrate 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!
- 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
Hope this helps and thanx a lot! I know this is a weird one.
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?
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
Hope this helps.