Irritable Bowel Syndrome (IBS)

Hi, my name is Chronic2. I'm here because, I’m Blessed that God has given me another Beautiful day to experience life. I suffer from decades of migraines too & feel for you. I think a lot more research needs to be done Re: Migraines & Ehlers Danlos. There are 13 different types of: EDS, & there seems to be a lot of the same symptoms listed for both diagnoses. It’s not until more recently that a few good Dr’s have thought outside the box & realized, that when their patient has been diagnosed with Several Symptoms of: Migraines, CSF Leaks out of my nose (3 failed attempts to seal it), TMJD, Fibromyalgia, COPD( never smoked or drank), cardiac issues, Peripheral Vascular Disease, a detached & convoluted large intestine, GERD, Schatzkes Ring, IBS, Carpal & Tarsal Tunnel Syndrome, Arthritis, Double Jointed & hyperextension of joints, neck, shoulders, back, hips, knees, elbows, ankles, hands & feet pain, Arachnoiditis, RLS, & a whole lot of Pain, etc.
I am wondering if there’s anyone with Ehlers that can relate to me? Did you ever have a DNA test done to confirm your Diagnosis? I am 63 now & it’s taken up until now for, not my PCP, but for my Cardiologist to suspect EDS. (I also have SVT, A-Fib., Mobitz, Paroxymal contractions, a bovine chest, & Bicuspid Heart). My Cardiologist recently did a DNA test on me that came up with these Results: an Unknown Significant Variant gene marker called, p.R440H (c.1319G>A) in the COL1A2gene. He told me that he did not know exactly what that means, & said he wanted me to see a Geneticist. When I asked him who he recommends? He said, that he did Not know of any, or where to refer me? I’m Thankful he did the test, but thought to myself? Then why did he know to do the test, if he didn’t know how to Interpret it? I went home & googled, Geneticists near me. My Dr was right And the nearest one that came up is in California!
I happen to live in Illinois. It’s a Long trip from home. Anyone have any ideas on this? Unfortunately, I guess we have to be our own Patient Advocates these days more than ever! It Appears to be an, out of the ordinary box that Drs apparently can make money charging for, but can’t deliver! It’s so frustrating sometimes. Feels like it’s better to leave the box unopened on a shelf! Have to see my Neuro. Dr. for 31 Botox shots to Treat my Shattering Migraine! Thanks for letting me vent! Thank you & have a Wonderful day. Sincerely

#MightyTogether #Migraine #Fibromyalgia

Do you ever feel like you're just too odd to fit anywhere? I'm single. I'm childless. I'm almost homebound. I am neurodivergent. I feel like there isn't a spot for me. I'm always trying to fit in to other's mold because there's not one for me.
It's a hard day of wishing I fit better. Wishing one of my labels was more common so I can have a safe place to be myself without having to fight for it.
I'm getting too tired to mask things. But others don't handle unfiltered me well.

Am I alone in this? What do you all do when it just feels like you're too much and not enough all at once?

#Depression #MentalHealth #DiabetesType1 #EhlersDanlosSyndrome #ChronicFatigueSyndrome #Fibromyalgia #PPPD #GastroesophagealRefluxDisease #IrritableBowelSyndromeIBS #AutonomicDysfunction #ADHD #InterstitialCystitis #Migraine #Grief

Last Friday, in the early hours, my pet bunny passed away. She was with me for eight years. I miss her so much. We rushed her to the emergency vet as she was struggling to breathe. We had to euthanize her because she was living with a congenital heart disease and her heart had swollen and started crushing her lungs. She had adapted slowly over the years and then suddenly she was out of time. I hope she is hopping over the rainbow bridge 💔💗🐰 and joining all my other bunnies there too. I've had pet bunnies my whole life. I really really miss her. It's been so hard to clean out her hutch and her things without her here.

To top it all off I overslept due to not sleeping well (was crying the whole night) and then I was late to work (really late).

Some colleagues had flown up from Cape Town and from Ireland for a workshop and I was late to meet them. Horrible first in person impression....

Then the following week Monday my period started. On top of this at the conference venue they served gluten, sugar and milk at almost every meal. My IBS started flaring from Tuesday onwards...

I was late again twice that week. I'm not proud of that.

Finally on Friday I was really early to the workshop. But this time the conference served peanuts inside their creamed spinach for lunch. Triggering a whole peanut poisoning episode... I left work early in a rush and a panic to get to an EpiPen at home (also not great - as it was the last day of the workshop and we had to say goodbye to our foreign colleagues). Not great for my work performance honestly.

This is why I have a remote job. I can manage my conditions remotely, even when there are many uncontrollable stressors like my bunny dying... But if you add going into an unfamiliar conference venue everyday where they just poison you nonstop...

Yeah I feel totally shit after this week... Physically and mentally...

How do I CBT this?

#prurigonodularis #AnkylosingSpondylitis #PsoriaticArthritis #Grief #MajorDepressiveDisorder #GeneralizedAnxietyDisorder @ @ @