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Hi - I am new here! I'm a 23 year old woman, and I have a working diagnosis of IBS, but I've got some further tests coming up to get to the bottom of what is going on. Unfortunately my usual doctor is not very helpful and despite going to her with symptoms for over a year, she repeatedly told me I was just stressed and needed to sit on the toilet for a bit to let my bowels empty properly. Thankfully I saw a new doctor today and she immediately got me several blood tests, including checking for Coeliac disease, a stool sample, and an MRI as I have been having some other symptoms explained below. She also prescribed Lanaprazole and Mebeverine. From my reading of the forum I know many of you are familiar with the length of time it can take to get a doctor to take you seriously on this.

I wanted to ask about some symptoms I've had that I've found a bit more unusual, or have read less about, to see if anyone else has experience anything similar. My symptoms started out very characteristically, with alternating diarrhea and constipation, and alternating pain just under my ribs on the left and right sides. Over time, I started to develop quite bad headaches, which are now daily, and occur always in the exact same place on the right hand side of my skull, right at the base. I also began to experience muscle pains, especially on my right side, tingling, numbness and cramping. I find these get worse when I have the headache and often correlate with right side pain in my ribs. The 'brain fog' I have read about gets really bad for me - I get quite dissociative symptoms, like my body doesn't feel my own. I can't concentrate at all and quickly find myself very panicked. I also feel very weak in these episodes. I have historically suffered with anxiety but it has always been related to something I can pinpoint, like going to see a friend or going into work. These days, that anxiety has diminished greatly but instead I get out of nowhere panic. Will just be sitting at my desk and suddenly my heart is racing, my arms feel weak and I feel out of body. I struggle to get my words out and my fine motor skills get worse.

Doctors think the headaches are muscular - but they feel neurological to me, and having seen there is a strong connection between our guts and our minds, owing to all the neurons down there, I'm more and more convinced that there is some connection.

Today I had to come home from work early because I had such a bad bout of diarrhea. I was shaking, hot and cold flashes, and running a temperature. An hour later and it's gone, but my whole left leg feels numb. It's really getting me down as I'll feel absolutely fine and then out of nowhere feel very unwell. I've just started a new job and it's so hard to settle in when you have these episodes, especially as you can't very well say to your new boss: 'Sorry, got to dash off, I've got the runs again!'

I hope some of you at least have had a good day! x
 

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Been there as well. Am there now. Wake up every morning feeling ill. Having panic attacks and pretty good anxiety/agoraphobia.

Unfortunately, none of these things appear to be unusual with this kind of digestive issues...

Here's the science behind it that I've been able to uncover in my own research and some ideas to help you. Disclaimer, I am not a doctor and this is not medical advice.

1. Serotonin (mood regulating neurotransmitter) and the target of an entire class of psychiatric meds (SSRIs and Tricylic AntiDepressants) is contained/produced roughly 75% (numbers vary) in your guts.
See:


2. It's unclear which comes first IBS or Stress and Anxiety, but they are linked in 50 - 90% of cases in both directions.
Here's a good overview: https://fixyourgut.com/keep-serotonin-levels-balanced/

3. Headaches... could be vagus nerve related. Not sure.

So ideas on what to do:

1. Talk with your Doctor about SIBO and SIYO. Many haven't heard about it. Breath tests are pretty clear. I responded very well to 14 days of Xifaxan two years ago. In 48 hours I felt like a new person. Didn't work for me this time... thinking I might have a SIYO (yeast) issue... Fair warning. Xifaxan is expensive (at least in the US).
Current breath tests don't distinguish between H2 and Hydrogen Sulfide, which can be important.

2. Start following these folks: https://www.cedars-sinai.edu/Research/Research-Labs/Pimentel-Lab/

3. Find a SIBO/SIYO aware GI specialist, nutritionist and naturopath (ND) and get them all in sync. You may also need a psychiatrist.

4. Start a diet log of intake/output/symptoms log. You can try the low-FODMAP and/or SCD. This is really hard btw. I eat a lot of chicken, fish, beef and eggs.

5. Start reading a lot....

6. Consider supplements: I've had a lot of success with VSL #3 (something my GI doc recommended) helping regulate things when I'm not chronic SIBO/SIYO. Worth asking your Dr. about.

7. Keep detailed notes about what you've tried and how you feel and what you want to try next.

8. Make sure the Drs eliminate objective things first: Celiac, Crohns, etc.

The good news is that you can probably nuke most of your symptoms and get back to normal, but it takes a while to work through the medical folks and you are going to have to push ideas at them.

Many just don't GAF about things beyond their specialty, but remember you are a whole person and your body is one interconnected system.
 
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