Posted , 5 users are following.
There's so much to this situation but I'm just going to stick to what's most relevant (and try not to omit anything in the process). It's extremely hard for me to type or use my voice so I'll be working on this over the course of the day--so if it's a little disjointed that's why.
So I've had health problems all my life but things got debilitating in 2013. I came home from work nauseous one night, threw up a few times on the way home, and have never had a better day ever since. One thing led to a trillion more and my current major diagnosis list is:
-Pompe/Glycogen Storage Disorder Type II
-Ehlers Danlos Syndrome, hypermobile type
-MCAS mast cell disorder
-Myalgic Encephalomyelitis (like CFS)
-Degenerative Neuromuscular Disease
-Large & Small Fiber Neuropathy
-Hypercapnic Respiratory Failure
-CIRS/chronic inflammatory response syndrome
-MFTHR gene mutation and some kind of carbonic anhydrous antibody issue
-Thoracic Outlet Syndrome
-PTSD and c-PTSD
I've been diagnosed with a lot of other things, smaller by comparison, along the way (chronic migraine, orthostatic hypotension, scoliosis, cervical kyphosis, chiari, bulging discs, foot drop, hearing loss, vision loss, lumbar radiculopathy, craniocervical instability, tachy-brady syndrome, reynaud's, etc. etc.) but those are the big ones. (I'm definitely forgetting a lot but bear with me. :s)
I'm being tested further for more specific details on the neuromuscular and autoimmune diseases, but they know that much so far.
I'm bedridden and in and out of hospitals a lot. I need a wheelchair to get around because I can't use my legs and constant dislocations make bearing any sort of weight with my legs or arms impossible. I can't even sit up longer than 20 or so minutes without needing to lean on something for support, and then by 30 or so min I'm falling over and unable to stay up any more by any means. All my major and most minor joints are in mechanical braces, my neck needs a hard brace, I need AFOs and multi podus boots for my feet, and I can no longer sit myself up or turn over or really do much on my own. Fine motor skills are also going.
There's still a lot we don't know or haven't tested for yet but that's so far.
But on to the post point.
I'm getting particularly bad with my stomach issues and none of my doctors actually seem very concerned. I'll list what's going on and also what we've tried already so all the answers aren't for nothing--because I've tried A LOT.
For the last four years I've been nauseous 24/7 but it's gotten progressively worse. It used to be helped enough by zofran 8mg once or twice a day that I could eat two small meals a day but it's only gotten worse and these last few months have entered what feels like really dangerous territory.
I'm never not nauseous. It's become overpowering and absolutely nothing makes it any better. When I eat or drink any amount, no matter how small or big, it gets astronomically worse starting half an hour after starting to eat and building until peaking around 2-2.5 hrs after the first bite. Sometimes sooner sometimes a little later. I feel full within a couple bites.
Liquid is actually often a little more nauseating than food, but they're both so severe it doesn't feel like much of a difference in the end at all. I vomit about 60% of the time I eat or drink and 40% of the days I don't.
I already know I'm gluten and lactose intolerant, so those things haven't been in my diet for years. I also cannot tolerate any artificial dyes, flavors, additives, etc. so everything I eat is all natural, and I react extremely violently to sorbitol, higher fiber foods, and higher fructose foods so I avoid most fruits as well.
I'm down to eating one tiny thing every few days or sometimes once or twice a week, and drinking a little bit every other day or so.
On top of the nausea I get frequent stomach pain, constant heartburn, (neither of which surprise me at all), and for some odd reason when I do try to eat or drink it makes me SO. HOT. and dripping with sweat for anywhere from an hour to a few hours after.
I AM on fentanyl patches and duexis for chronic pain and used to be on a large list of medications and other treatments, but this all started BEFORE I started any of those meds and I've tried going off them to help. I'm actually off just about all my meds minus my patches now because I can't tolerate the water to get them down anymore and most dissolvables have dyes, sorbitol, and/or other allergens/problem ingredients and have just made me sick.
So far I've tried:
-Zofran, up to 8mg three times a day
Sometimes to stop myself from vomiting I'll take three together and it does stop the vomit but doesn't totally help the nausea. I usually ejd up taking 5-6 a day just to not throw up though and I only get 15 at a time so three or four days and I'm out.
-Eating small but frequent meals. Didn't work because five minutes into the first meal I'm too sick toneat any more or again for tue rest of the day. Same with small sips of liquid every hour; the first try does me in for the rest of the day.
-All the compatible OTCs I can get my hands on. Nothing even touches the nausea.
-I've even tried aromatherapy.
-Breathing techniques, made impossible by my inability to breathe right or hold/control my breath.
-CBT and DBT
-Mirtazapine, which I can't say got enough of a run because that was around the time I had to stop my meds--which has made everything else exponentially worse on top so these last few months have been nine times extra nightmarish.
-Cutting lactose and dairy, gluten, artificial/processed foods, and other irritants
Psych involvement has been ruled out by my psychiatrist, two therapists, the insurance's psychiatrist, two hospitals' psych teams, and the home health care's social worker, so please don't bring that up. We've EXHAUSTED that possibility.
I had a gastric emptying test in 2014 and it was fine, as well as two endoscopies and a colonoscopy which didn't give any answers either, but nothing related since then. We tried a barium swallow then too but I just threw it up. But in 2014 things were immensely better than they are now so we want to redo some of those, but ingesting things is a no-go so I don't know how we'd go about any of that.
We've ruled out:
-Chron's/Colitis as of 2014
-Lyme Disease and other infectious diseases
-Cancer as of 2014
-Celiac/lactose intolerance and other allergies/intolerances (I have gluten and lactose intolerance and a lot of allergies and intolerances, and cutting all these things did help for a long time, but it's not enough anymore)
I did get c diff in the hospital once but that was well after this started and was cleared up.
I'm getting nervous that I'm eating and drinking almost nothing and vomiting more frequently than before and nothing is working, or only works very little. And for so long I was dropping lots of weight and I'd bet I still am, but I'm noticing that my stomach looks BIGGER than it has in months. It always distends when I eat but I mean in general, I've just gotten a bit fatter. (Just my stomach and a little bit in my face though; my arms and legs are skinny as ever.)
I've really been trying to eat a bite of something every day but the last few months and ESPECIALLY the last few weeks, I really can't do it more than once every couple days or so--and EDS has ruined my teeth, so I really am trying to vomit as little as possible because I know that's been making it worse; just last week two of my teeth's fillings have come out (it's not really fillijgs, because they're not cavities--I've actually never had one. I have segere enamel decalcification and I get pits along my gumline that we fill as they come.)
Note: I've never had a sip of alcohol, never did any drugs including pot, and only smoked for five months in my youth.
OH, and I'm 21. Had lots of health issues all my life but they really became debilitating starting in 2013 after a fall off my old horse that hasn't been deemed related yet, but I sincerely think occured because of the balance issues and dizziness I was having, not the other way around. I got my job because of my ability to stay on a horse through absolutely anything; there was no reason for me to fall that day when she just stumbled a little bit.
What do you guys suggest? Once it hits five days without eating and three without drinking I do go to the ER but they keep sending me home because I have an appointment with a new gastro in mid-November. Not sure they could help anyway to be honest.
I'm just at the end of my rope and if I had the physical capability I'd definitely have killed myself years ago. I honestly wish they'd just give me a GJ already and call it a day, and my own regular nurse keeps telling me to ask about TPN of all things (but I don't want to ruin my liver and I want the option of venting my stomach) but I know those things won't happen without a diagnosis which has been impossible to get! (And I know when it comes to that they'll start with an NG which will be absolite torture as my gag reflex is so hyperactive I gag when I brush my teeth -_-).
I'm just so fed up with everything.. I haven't had a day remotely worth living in the last four years.
Any suggestions/advice? What happens if they still can't diagnose anything with the new guy in November? What's left to look into?
0 likes, 7 replies