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connection between IBS, Dysautonomia, Fainting?

This will be long so please bare with me. I am a 30 year old married, female with no children that has not found ANY relief over the last 20 years of doctors visits and investigations.

When I was 11, I started showing symptoms of severe IBS. It went undiagnosed. I lived with it painfully for about 8 years.Fullness, bloating, diarrhea, constipation, sharp stomach pains, dull pains, sensitivity to ALL foods, etc. When I was 18, It came back with a vengeance. They ran several tests on me, but everything came back normal.

When I was 21, it has progressed to unbearable. The stomach pains were crippling.I would feel full after only 1 bite of food, etc etc After upper GI's, blood work, and ultrasounds they found that I had massive Gallstones and told me to remove my gallbladder.(I was 21, and 105 lbs with no children. The opposite of every typical gallbladder patient) I was told this would relieve my symptoms. But then after removing it, the symptoms only got worse. Then they found I had the H. Pylori Virus and several large ulcers. So I was given treatment to cure them.( I did not receive a follow up so Im not even sure if it worked)

At this point, no relief from my symptoms has ever occurred. So I have been living with it without any form of medication for years(because everything I was given did not work). My other symptoms have included severe fatigue and weakness, Body Aches, and in the last 6 months syncope with orothostatic hypotension or possibly vasovagal syncope. I really received no information specifically as to what was going on. They attributed it to dehydration (but I haven't been dehydrated for 20 years). I was givingXanex for aniexty even though the only thing I feel anxious about right now is fainting and not knowing whats going on with my body. My husband seems to think the xanex helps me relax when we need to run errands or leave the house but I still end up with symptoms. I do not have POTS according to the cardiologist I saw. However, I did faint during the first 15 minutes of my Tilt Table Test and I was unable to continue. All EGG EKG, holter monitor tests were normal.

Now at age 30 my symptoms include on a regular(usually daily) basis of IBS, severe fatigue and weakness, dizziness, strong sensitivity to heat, inability to stand for long periods of time or sometimes not even for a few minutes. Strong bones/body aches. Headaches, pre-syncope. I am also very prone to UTI's. For a while, I was having 1 a month for about 8 months.My doctor just recently ran several blood tests, all normal. No Celiacs, No Crohns, no allergies. We just completed a 24-hour at home urine test, that also came back normal. The only actual result I have gotten is that I am Vit-D deficient and my B12levels are low. So Im taking 50,000 units of Vit D once a week, and a daily b12 vitamin.

So for the last 6 months, I have not been working or driving a car(I was pre-syncope while driving one day, so we deemed that unsafe for me for now) I am spending 99% of my life at home as I am afraid to activate symptoms of fainting when I go out.

With the IBS combining with the orthostatic hypotension, I am wondering if I have some form of Dysautonomia or if anything I have mentioned can be linked together somehow. Between the h. pylori, the gallbladder removal, IBS and the newly Syncope.
Oh, also I eat pretty healthy. I juice 2x a day about 4 days a week.I don't eat fatty foods. I have increased my salt intake.  (with the IBS though, Im not sure what good any of it does because I am sensitive to EVERYTHING. nothing can be ruled out as safe.)

Am I just a horrible mixture of bad genes and back luck or are any of these things linked?

1 Responses
13954317 tn?1435681675
I started getting ill in 2005. It was all abstract issues. My Dr thought it originally relates back many years. I have systematic pure autonomic failure. My appendix ruptured in 2001 and wasn't removed for 3 days. ER error. It took awhile to get better ,as there was a lot of pus throughout my abdomen and colon. I have chronic pain from it. Separate issue, maybe? I survived and went back to work. In late 2004 I started feeling ill. Abdominal pain, brain fog, loss of hair, muscle spasms in the legs and chest mostly, chronic fatigue , liver enzymes elevated to name a few. I was constantly going to the Dr for one thing or another. I thought I was a hypochondriac! I was sent to specialists for everything as it happened. At one point I was seeing 8 specialists. Talk about stressful. The strange thing is tests were coming back normal. This really had my doctor confused. I had been to ER on so many occasions. I was at one point constipated for 10 days. No blockage and nothing helped. That was painful! My bladder stopped working, so I had to learn how to self catheter. Keep in mind the symptoms would come and go. I never knew from one day to the next. I had to stop working obviously. So for 4 years they were trying to figure me out. In 2009 I ended up getting a pacemaker . My heartbeat was below 40 and I would pass out. I got sent for an angiogram and was told I needed one. After the surgery, while in in ICU, my BP began to fluctuate . I would get dizzy and faint. I got sent off for a tilt test. I passed out immediately . So now I was diagnosed with Postural Hypotension Syncope. Meaning my BP would be normal sitting down, drops significantly when sitting up, than drop even more when standing. If I had warning like getting dizzy I would promptly sit. Many occasions I would get no warning and faint. I had to stop walking because of this and getting groceries was one of the worse. Some days I have a difficult time cooking. So now the Neurologist decided after a full checkup and blood work up for strange diseases , he would send a blood sample to the mayo clinic. I live in Canada so there was jumps and hoops he had to go through. It all pointed to Pure Autonomic failure with Disautoimmune being the culprit. Since then I have progressed to tremours, chest pain , restless legs syndrome just to name a few. I also have neurological pain throughout my body. The neurologist tried IVIG treatments with me but they made me feel worse. So we stopped. This teaching neurologist discharged me as a patient because he said there isn't anything that can be done proactively for this disease. My family doctor can treat me as things happen reactively.  I'm not happy with that as I keep getting more symptoms. My family doctor has tried to find me a neurologist, but they all say the same thing. My quality of life has deteriorated after this many years. I plan things and then I have to wait until that day to see if I'm able. I have a handful of friends that truly get it and support me. I didn't mention I am a 59 year old female. I haven't been able to work for 10 years now. My husband of 33 years died from cancer 2 years ago. My two grown kids aren't living here anymore. They deserve a life:) I know there are a lot of people on this site that use a lot of medical mumbojumbo. I don't . I don't understand what they are saying, lol. I'm new to this website and do find it helpful. Don't worry, you are not alone. Our disease can go in so many directions. Even my family doctor has to do research before prescribing me anything. We're rare special people! I'm sorry for the lengthy response. There is a lot to cover and I know I have left some stuff out in error. I wish you well and brightness in your life:) Jo

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