Antares in NYC
Senior Member
- Messages
- 582
- Location
- USA
Hi everyone,
This past weekend I experienced a sharp and scary relapse, out of the blue, with some very unpleasant side effects.
Let me explain as a preface that, since I got ME/CFS, I have had major IBS-like issues. One of them is unexplained bouts of rectal bleeding and cramps of unknown origin. This used to happen once every two years or so... recently it's been happening every 2 or 3 months. Since 2003 I have had 6 or 7 colonoscopies/ endoscopies with different doctors that did not reveal the reason for these bleedings (no Crohns, no IBD, no tumors, polyps, or infections, etc).
This last July I had a new colonoscopy that revealed a minor ulcerative proctocolitis. This GI doctor gave me a strong antibiotic (Xifaxan), followed by weeks of probiotics. The severe bleeding went away quickly.
Now, this is what happened this weekend:
This was terrifying. I suspect certain things trigger that odd IBS bleeding (coffee, certain fruits, vitamin E supplements, certain blood-thinners), but this episode was extreme. I think I lost a ton of blood between Thursday and Friday, and that probably caused a sudden drop in blood tension after dinner on Friday night.
Still, this episode came with a clear increase of other ME/CFS symptoms at the same time (brain fog, inner ear pressure, intense cervical neck pressure).
Today my energy level barely reaches 50%, an improvement over what I felt this weekend. The brain fog is still way thicker that it has been in a long time.
Any suggestions? Anyone else experiencing anything this scary and, frankly, disgusting?
You advice would be appreciated. I'm reaching to my doctors today, but just wanted to check with the board members and their wealth of knowledge about this awful disease.
Thanks in advance.
This past weekend I experienced a sharp and scary relapse, out of the blue, with some very unpleasant side effects.
Let me explain as a preface that, since I got ME/CFS, I have had major IBS-like issues. One of them is unexplained bouts of rectal bleeding and cramps of unknown origin. This used to happen once every two years or so... recently it's been happening every 2 or 3 months. Since 2003 I have had 6 or 7 colonoscopies/ endoscopies with different doctors that did not reveal the reason for these bleedings (no Crohns, no IBD, no tumors, polyps, or infections, etc).
This last July I had a new colonoscopy that revealed a minor ulcerative proctocolitis. This GI doctor gave me a strong antibiotic (Xifaxan), followed by weeks of probiotics. The severe bleeding went away quickly.
Now, this is what happened this weekend:
- Around thursday I started noticing random and heavy rectal bleeding again, several times a day. I know that a few things triggered these IBS symptoms in the past (like coffee, which I no longer tolerate, or Vitamin E supplements, or CoQ10, which gives me strange body reactions, etc).
- By Friday night, I had been bleeding profusely several times a day. I can't calculate how much, but basically major bleeding at least 3 times each day, every time I went to the bathroom. I'm talking copious amounts of bright red blood.
- My girlfriend and I had dinner, and soon after, I feel suddenly violently ill, very lightheaded and nauseous, fainting, like my blood pressure had dropped tremendously. I had to lay down quickly. A major headache developed, with a strong and very unpleasant inner ear pressure (like my head was going to explode), and major pressure in the back of my neck. The brain-fog also shot up considerably, to the point that I was slurring my words. I had zero energy, and crushing fatigue. I had relapsed from my usual 60% energy level to 20% or below.
- I felt like I had a high fever, but my body temperature never rose above 97° F!
- My girlfriend helped me get in bed. She was terrified. I spent the rest of the weekend in bed, in this awful condition. I didn't take any of my medications and supplements over the weekend, just in case.
- This terrible relapse only started remitting on Sunday. The rectal bleeding is still happening, but it seems to be remitting as well, whatever it caused it.
This was terrifying. I suspect certain things trigger that odd IBS bleeding (coffee, certain fruits, vitamin E supplements, certain blood-thinners), but this episode was extreme. I think I lost a ton of blood between Thursday and Friday, and that probably caused a sudden drop in blood tension after dinner on Friday night.
Still, this episode came with a clear increase of other ME/CFS symptoms at the same time (brain fog, inner ear pressure, intense cervical neck pressure).
Today my energy level barely reaches 50%, an improvement over what I felt this weekend. The brain fog is still way thicker that it has been in a long time.
Any suggestions? Anyone else experiencing anything this scary and, frankly, disgusting?
You advice would be appreciated. I'm reaching to my doctors today, but just wanted to check with the board members and their wealth of knowledge about this awful disease.
Thanks in advance.