eds, abdominal pain, oregon

[Garden Gal]

I have a teenage son with EDS and autonomic problems related to it. He has had a long GI history that is more stable than normal now, however now he's having a recurrent set of symptoms that I don't feel we're getting to the bottom of. I would love to hear from any of you who have similar or have suggestions for what might be going on, treatments or doctors in Oregon you have seen with a framework for EDS/dysautonomia

Low left pelvic pain. It improves with passing gas, but seems to be there weather or not he's constipated, having diarrhea, or other GI symptoms. Comes and goes through the day but especially related to running. The upward motion of his hip makes it much worse. I expect both a GI and musculoskeletal component, but not sure how best to address. I wonder about diverticulosis, plevic floor etc. Thoughts?

As he wants to be an active kid, this pain is limiting and pretty frustrating for him. Hard to run, do PE,  if he's constantly having to stop with pain.

[MattyT]

Hello GardenGal, 

My thoughts - First, your son is a lucky guy to have a mom who is so well informed. You seem to be on the right track. The fact that he has a diagnosis as a teen is a wonderful reflection on you. 

My experience:

• I have hypermobility syndrome and recently confirmed hyperadrenergic POTS. These two conditions tend to travel together. It took me years to get a definitive diagnosis and I had symptoms of this for decades.
• I've lived a long and mostly healthy life with a rewarding career and I'm now well beyond retirement. I also have five wonderful healthy grandkids who bring me immense joy. I also have some near misses in my health history, so I feel sorta lucky overall.
• I tend to have a lot of problems with hypovolemia which is a common problem with some forms of POTS. Hoarseness of voice and constipation are things that I live with and manage. In my case it is caused by elevated norepinephrine levels which may lead to complex digestive issues. I also have moderate diverticulosis which means that I must work diligently to avoid constipation. Diverticulosis has repeatedly been documented on routine screening colonoscopies (which were done because I hit the magic age for screening). I often have mild abdominal pain.
• I also have a tendency toward soft tissue injuries including tendon ruptures everywhere. This also includes a tendency toward rib fractures which are, at first, frightening. Eventually I learned to deal with this. The most recent rib fracture was in a yoga class while doing a supine twist. It really wasn't a big deal and I finished the class without skipping a beat. I have also torn and over-stretched abdominal muscles/connective tissue which is pretty common in hypermobility; this can cause pretty significant discomfort and will limit my activity until it heals. 
• I still work to find the perfect combination of medications. I'm delighted to report that I am recently very, very fond of clonidine + mestinon. I feel wonderful and I smile a lot more often.
• As a kid I was hopeless at any sport which required coordination. That was pretty discouraging for me. 
• As a young adult, I found my groove with kids, family, advanced yoga, long distance cycling. I was recruited several times into amateur team triathlons as the cyclist (and won too).
• As a senior, I'm riding my spin bike almost every day and usually manage to finish in the middle of a pack of 30 year old riders. I surprise all my doctors...including the cardiologist.

GardenGal, you are doing all the right stuff. You will find the answers. I hope this helps and let me know if you have any questions.

 

[Garden Gal]

MattyT

Thanks for all of this. I appreciate it. I often feel sad and hopeless that the progress in how he feels seems short lived and the things he struggles with come back around again and again. I appreciate your reminder that there is forward motion and that it he will likely grow to have a healthy and active life in whatever form that takes. Thank you for sharing your journey with me.  I have been very pushy with a great many doctors and the progress fells like it's moving through a brick wall. And yet, we have had diagnosis. Found some things that work. He's functional now. making it through school most days. He has some meds that make a difference etc. These things are wins. Thank  you for your encouragement. I hope it is ok, I have sent you a private message with a more specific question.