u/Survivorlife-86

TL;DR: Does any else experience this? I am experiencing unexplained chronic pain in my abdomen and joints. Doctors do not seem to be trying to find the cause and diagnose, just trying to kick the can down the road.

I wanted to share my experience and see if anyone else has gone through something similar.

For some context, I started experiencing unexplained symptoms after recovering from COVID about 3 years ago. The symptoms eventually went away for almost a year, but unfortunately came back much worse after I underwent a fertility procedure. Since then, I’ve seen multiple specialists and also tried giving my body time to recover, but the symptoms have persisted.

My husband and I decided to put our faith in the public healthcare system and went to a public hospital(which recently underwent a rebranding), hoping that I could finally get some direction and, hopefully, a diagnosis.

I saw a GI specialist and underwent several tests, but the results were inconclusive. My husband suggested asking whether a colonoscopy might be appropriate. The doctor felt that it wasn't necessary because I had already had one about 3 years ago, and also didn't want me to go through the bowel preparation unnecessarily.

We also saw a rheumatologist at the same public hospital because of the joint pain. After hearing my history, the doctor was empathetic, but I was also told that I appeared to be "doctor hopping." I understand why a doctor might have that impression when looking at my medical history, but at that point, the comment felt quite dismissive. Other than running some tests, I was eventually referred to occupational therapy, which I didn't go because it means I need to hear a person who experienced no such pain to teach me how to live my life like this. This is really no way to live, for those in chronic pain u would know.

Eventually, we went back to a private GI specialist, who performed a colonoscopy and found a bacterial infection (*c.diff*) and inflamed colon (colitis*)!!!!!

It may not be the main cause of all my symptoms, but finding something made me wonder whether I should trust the signals from my own body more when something doesn't feel right.

I completely understand that not every symptom has an obvious cause and that doctors can't simply order every possible test. I'm also not expecting a diagnosis immediately. What has been frustrating is feeling like I'm being passed from one place to another without anyone really taking ownership of trying to understand what's happening. And also being told 'doctor hoping' and I dun know even wanna say another chapter when doc treats a person in tears and pain be treated like drug addict!

Thankfully, my husband's corporate insurance and my own health insurance cover most of the costs of seeing private specialists, so we have that option.

But the experience with the public hospital has honestly left me feeling quite discouraged.

For those who have experienced unexplained chronic abdominal/joint pain, especially after COVID or another significant event, what did you do when the usual tests came back inconclusive? Did you eventually find a specialist or approach that helped connect the dots?

Would really appreciate hearing from others who have gone through something similar.

Anybody with similar experience?

Sharing is caring. 😊

Can you eat without pain?

Does digestion hurt?

Is that pem?

I will visit gut long covid as well. (This group has more people so..here I am)

*Sharing is caring. Plz refrain from negative comments. No judging as we are all trying to survive.

I used to record my symptoms using period calendar just to see if it's due to hormone. It's not that effective in terms of tracking.

Then I changed to Bearable to track my symptoms (paid version).

Times pass and i thought why what's the point in tracking.

One fine day, I find myself left with only 1 strip of stilnox. "Why it runs out so fast?", did I misplace them? It's freaking expensive and it seems to be one of the more effective med. (Plz do not comment abt the med, not the point of this sharing).

How do I backtrack the number of stilnox?? So instead of counting them day by day, I export cvs of Bearable into excel sheet, then send them to chatgpt and ask how many have I taken so far. So it was able to tell me 31 from 2nd June till date. "Oh, so I took more than 1 on some worse flare up day" it gave me a better idea to control and save me a day of extra chores to do tedious counting.

Thank you whoever made this app. I am always thinking that I need to track my symptoms in 'unbearable lol, what a name'. I hope the app can sync with my period cycle for better insight.

*Sharing is caring. I hope everyone's day is better with a little gratitude 🙏

Just sharing this useful app.

Questions from doctor

"Do you have children?"

"Do you take cocaine?"

And also be reprimanded for doctor hopping.

I know I have been complaining alot about doctors. So let's laugh it off. Let me know your thoughts. Also share what other things doctors asked you which makes you feel "??????"

I have met a few nice doctors so rest assured it's not all negativity. Curious chronic patient 🤔 that's all.

*Sharing is caring. No negative comments from our own group k. Good souls.

Anybody initiated divorce? Not the other party but from urself. Reason being guilty, lost of hope and most importantly hope ur spouse live a better life.

I am asking because our house will be able to be put up for sale by end of the year (after minimum occupation period).

I have been pitching the idea to my husband of 5 years (thankfully no kids) since my relapse. I still love him but i do not want to drag him down. I know how hard it is to be a caregiver.

I know marriage vow is through sickness and etc. Still, we only lived once and he definitely deserve somebody healthy who can bore him children and more.

I can't work, can't do much actually. 38f and my husband is 40 male. I dun have family members so my plan is to get a small flat and live off some passive income I have and maybe do some trading. Tbh, I dun plan to live so long if my life is all about pain.

Anybody with past experience and how do u initiate or cope??

*Sharing is caring. No negative comments here.

I am so afraid of my pain, which happens every few hours after pain meds wear off and I have to take the darn thing again. My pain comes after eating. Not eating also cause pain. Pain daily, pain which wakes me up at night. Horrible way to live in fear and pain.

Who is facing similar pain phobia? It is not anxiety, i am talking about real pain, real joint swelling and etc.

U would think by now I should be used to it by now. The fear of pain, vomiting from pain, is so real, even after yrs.

What's ur fear? Sharing is caring 🙏 appreciate no negative remarks.

How many of you suffer with pain level 7/10 daily with insomnia, gastrointestinal issues, chooses natural healing, while believing your body can heal from this.

Or

Would you have looked back and think to have taken something for pain was a better choice, not natural and may come back to bite you in the ass shortly.

No right and wrong here.