Thank you for the welcome! ;D
;D I am very lucky to have him!! It is the ultimate irony yet quite a silver lining. I think that in some ways, having him in my life helped to push the symptoms that I have experience over the years to my breaking point. He is quite found of deserts so I have had more since I have known him than my whole life combined. More importantly, before opening his current restaurant, he helped to open a small Salumi factory in Oakland. Everything that he creates is mind blowingly delicious and I really to not have any self-control once I start to eat something so this meant that I ate about a million pound of cured meats in a year. He would be mad at me for what he would call "blaming" him but in my eyes it is actually a blessing because I had been suffering for so long and, if this overindulgence did bring my issues to a head, then he saved me from a life of unexplained pain and exhaustion.
I really have not had much luck finding anyone locally who has said resoundingly that they know much about HFI/FM. The Genetics departments that I mentioned earlier know something but it seems strange to me that they would take several months to schedule a simple blood test.
Here is my history as I can see looking back in time. If you can bear with me and read it, I would appreciate any feedback as to what similar symptoms you have experienced or posted. (I might win the prize for the longest post ever - it's a long and crazy one - sorry if it is TMI):
Early childhood was pretty healthy because I think that I managed to avoid most of the foods that would have overloaded my system.
I had daily unexplained morning fainting spells and arrhythmia.
Out of the blue, somewhere between 10-14yrs old I stopped eating iceberg lettuce, turkey sandwiches (especially if it was not true roasted breast meat I know think that it was the processing sugar, etc that bothered me) - previously my favorite, and mayonnaise (not always but more than I had before). I did not have any obvious ill effects from these foods, but I did consistently get a strong enough queasy feeling in my gut to make me avoid at all costs. Other than that, I would eat like a horse but stayed amazingly skinny (not that I realized that at the time).
The next unexplained sign was in college when I discovered that I would pass out if I ate whole wheat bread.
My first migraine was shortly after college. These were the standard monthly ouch I am going to bed, turn on the TV so I could focus on something other than my brain exploding and then trowing up an pooping until the poison leaves my body. I always explained these as being much like food poisoning but with the emphasis being on the brain explosion. It did always seem to be that they originated in my stomach and I constantly said that I wish that someone would do a study on the connection. I was raised to ignore all normal headaches - aspirin was a major no no. So of course, migraine "sufferers" were just crazy people looking for attention. And then my eyes were opened. One cannot truly understand the exquisite pain until they have actually lived it.
In my early twenties I had one beer and one Greyhound one night out with a friend. I rarely drank but my tolerance was pretty high. For some reason that night, I became violently ill - so much so that I still can't stand the taste of vodka despite the fact that it used to be my drink of choice. I had a raging fight with my now ex-boyfriend because I had spent the day helping him with his business issues and running his errand yet he could to be bothered to stop for a bottle of water for me. I was insanely thirsty which was a little out of character. I have now idea how, and it might have been a coincidence, but this seem to trigger GI catastrophe for me. I spent a few weeks not being able to get out of bed for more than a few hours or sometimes minutes at a time because I was doubled over with excruciating abdominal pain. I have always had a disgustingly high pain threshold (my GI doc laughs at how far he can get in my sigmoidoscopies with barely any drugs on board) so this was pretty major. I then had every GI test imaginable at the time - motility, barium x-ray, colonoscopy, blahblahblah. I have never had an endoscopy and I wonder why not but keep forgetting to ask. This was through my first GI doc. The only thing that he found was that I have at least three extra feet of colon. I wish that I still had that x-ray. It is really crazy looking, like I have a full roller coaster loop in my descending colon. He wanted to operate to remove the extra. My father's stance was that I was born with it and had lived with it that long so it shouldn't be bothering me all of a sudden. He as a big believer of "it's all in your head, Cari." He also was very concerned that the chances were large enough that the surgery could fail and I would have to live with a bag. Obviously a convincing argument for anyone. Time to switch to GI doc #2 - still my current. He sent me to Stanford to learn how to breath (I apparently forgot) and also to use this crazy bio-feedback machine to retrain my tushy muscles.
I had been having drastically swinging bouts of constipation and what he called reactive diarrhea. In retrospect, I kind of think that it might have been the reverse. He then discovered that I had somewhere along the line picked up giarda - not usually found in the US and it has been years since I had traveled anywhere 3rd world. Unfortunately, it was not so easy to kick. I could tell when the antibiotics were working because, when I was well I always had a naturally flat stomach, when I wasn't a small area around my belly-button would poof up. The fortunate part of all of this is that, had I not had to have that first colonoscopy, I probably would have died of colon cancer by now.
Anyhow, other than follow up colonoscopies, not much else was done to diagnose. I have spent 15 years being ridiculously constipated and in such chronic pain that I did not really notice it after awhile. Of course, it made morning routines kind of crappy - no pun intended. Any laxative made matters worse. Massive pain.
During this time, I saw a massage therapist weekly to help relieve the pain. He suggested a cleansing diet which is amazingly similar to the HFI diet. I tried it for a few weeks or more. It helped enough that I decided to stop it. Brilliant. Oddly enough, every few months for a year before we discovered HFI/FM, I was telling Adam ( my hun) that I felt like I should try that diet again. NOt easy to do when your life revolves around food.
A few years after this initial episode, I developed a second migraine type. This one gave me no pain but some really fun floaty black spots to keep me company. when they first started, I would make this face
to see if I could focus on them. Rather silly.
In think around 2003 or 4ish, I became quite attached to my third type of migraine, a peri-orbital migraine. It was with me without taking a break for at least a year. This sort of feels like it is sinus related but it isn't a sinus headache. My entire right eye socket from the eyebrow down feel as though it is constant spasm. It would feel better if I could remove my eyeball and squish it. I also had a constant sinus tickle like there was a little monster dancing around and had blood clots everything that I blew my nose.
I then heard a radio interview with a doctor talking about SIBO. I immediately asked my GI doc to test me but he was not familiar enough with it yet to feel comfortable. He told me that he would look into it and we would discuss at my next colonoscopy. Unfortunately, my father passed away in 2005 and then my business burnt to the ground in 2007.
I was a little to preoccupied to deal with any doctor appointments for a couple of years.
In the interim, I was bloating so extremely and so uncontrollably that I never knew what size I would be on any given day. My entire wardrobe went into storage to be replace by more flexible garments.
2-3 yrs ago, I suddenly developed asthma. Or that's what we called it because we couldn't come up with any other explanation. I all of a sudden have two types of inhalers and Omnaris in my life.
November 2008, we took our annual trip with our friends up the coast I got so frustrated with the the fact that, in the car ride up, I was skinny and felt great, but the next day, I couldn't button my pants. I also felt too sick to be very helpful with cooking and cleaning which is against my nature. I was violently ill by the time that we left. This was the final straw so I became determined to figure my freakish body out once and for all. I had finally found a GP that I liked. When I mentioned my issues to her, she told me that she regularly sent patients for SIBO testing to...MY GI doc! So I made an pre-colonoscopy appointment also planning to discuss the SIBO but the first available SIBO testing appointment was months away. Fortunately, I ran into the GI Doc in the hallway and asked if I wanted to try the antibiotic (Xifaxin) treatment. I said, "Duh! What do you think? I mean we both know that I have it, right?" So, I took the first dose at night before bed and woke up the next morning sobbing because I felt so much better. I was shocked by the amount of relief that I was experiencing so quickly and by the contrast to the amount of chronic pain that I then realized that I had lived with for 15 yrs! We spent the next ten days amazed at the daily drastic changes in my body sensations and shape. I pooped like a normal person for the first time in decades. Adam told me that my face looked like his old Cari. Unfortunately, the effects wore off within a few weeks. I decided to measure myself before an after the second round. Crazy!! My waist shrank 6 inches in a matter of days, my arms at least 1/4", etc. I have been taking Xifaxin monthly since then but it stopped working as well.
My mother was so desperate that she sent me to a naturpath who discovered that I had a yeast infection in my bowel that he had never seen before. I looked it up but the only thing that I could find was that it normally is found in plants and that it can be used to soften birch wood. He prescribed an anti-fungal med which took away the pain for a while.
Mom then came across HFI/FM on the internet and it was the first thing that made sense to both of us. My GI Doc had no idea how to test for it because it had "never been an issue" in his practice. While his staff forgot to follow up on researching the info that I sent to them about the hydorogen breath test, I tried a mild form of the diet and did feel somewhat better and was able to fit into an dress that I never thought that I would be able to wear for Adam's restaurant opening. I went off of the diet because of the opening and because it was such torture that I did not want to figure it out until I had an actual diagnosis. A week later I had a major crash which lasted three weeks (I described this in another post).
I finally managed to get the test. I could barely manage to swallow the solution. Although I could tell that most people would like the taste, I found it to be disgustingly sweet. I also started feeling sick after the first few sips. My head was splitting, I was totally nauseous, had a splitting headache, was shaking and dizzy. The second breath after the control my numbers shot through the roof. I went to lunch with my mother who almost took away my car keys because I was so spaced out. Lunch helped though. I am pretty sure that this was a hypoglycemic reaction to the solution. I am very glad that the positive result came so quickly or else I might have crashed pretty hard. Mom bought us some copies of the book "Fructose Malabsorption the Survival Guide." She and Adam both independently called it "a book about Cari." When I read it, I noticed that the breath test is dangerous for someone that has HFI because of the potential for a dangerous hypoglecimic reaction. OOPS!
I immediately started on the diet sticking only to completely safe foods. I was a completely different person within a week. I stupidly cheated just a teeeneyweeney bit for Thanksgiving. I immediately felt ill and had another 3-4 day crash. It took me two weeks back on the strict diet to start to feel as good as I had during that first week. I haven't strayed since. I have been feeling great and Adam's new nickname for me is "Skinnyminny." A month free of headaches, abdominal pain, sinus pain, asthma, etc. has been crazy. Adam told me yesterday that he was really happy to have the Cari back who could laugh and joke with him instead of getting angry when he is being an idiot. Unfortunately I have had two headaches this week. Both came on a day when I delayed eating. Yesterday was one of them. I am also bloated since last night at dinner but I am not aware of eating anything off-diet.
Oy.
OMG - that was a novel! SORRY!
Hi there everyone and Happy Holidays! I am sooosososoosOOOosoOOoo glad to have found this forum. I was diagnosed with at least FM this November. I have a done a ton of research and feel pretty well educated about diet, etc. Of course, all of the diets contradict each other so I still have a ton of questions. I will go into my looooong history later because I know that some of you (and me) are trying to identify some obvious links. 
I had been having drastically swinging bouts of constipation and what he called reactive diarrhea. In retrospect, I kind of think that it might have been the reverse. He then discovered that I had somewhere along the line picked up giarda - not usually found in the US and it has been years since I had traveled anywhere 3rd world. Unfortunately, it was not so easy to kick. I could tell when the antibiotics were working because, when I was well I always had a naturally flat stomach, when I wasn't a small area around my belly-button would poof up. The fortunate part of all of this is that, had I not had to have that first colonoscopy, I probably would have died of colon cancer by now.
to see if I could focus on them. Rather silly.
I was a little to preoccupied to deal with any doctor appointments for a couple of years.
