exhaustion

[Tramezzini]

2 Years ago I got PBC.

Life has been absolutely overwhelming lately. Physically, I feel like I’m falling apart, and I’m only in my 30s. i am exhausted…

I’ve been dealing with constant pain and discomfort—stiffness throughout my body, unrelenting shoulder pain, and a burning sensation in my back and down to my bum. On top of that, I’ve been diagnosed with gastritis, which makes my stomach and throat feel like they’re on fire. No amount of antacids or medication has provided relief, and it’s just another daily battle to endure.

Adding to everything, I was recently in a car accident involving a truck. Thankfully, it wasn’t worse, but it’s only made the pain and stress I’m already dealing with even harder to bear.

And yet, the healthcare system feels like it’s failing me. My GP completely disregarded my concerns, leaving me feeling invisible and unsupported. Even a trip to the hospital turned into another disappointment with no real answers.

To make matters worse, my MRI revealed calcifications in my brain. At my age, this is terrifying to process. Comparing it to last year’s scan, there’s been no change—just the same unsettling reality and no solutions in sight.

At this point, I’m drained—physically, mentally, and emotionally. It’s hard to keep going when it feels like everything is working against you.

[Turquoise2075]

Dear Tranezzini, I really feel for you and also relate to the frustrations at trying to get adequate help. I have had periods of extremely debilitating fatigue and cognitive issues. At the moment my issue is needing to sleep a huge amount including in the day. I am finding that I’ve had to do my own research extensively to try to find answers. I did some advanced micriobiome testing and supplementation with a naturopath starting in 2022 which was the first thing to balance my liver readings. I’ve had to think out of the box as ursodeoxycholic acid wasn’t bringing my liver readings down. I’m now on obeticholic acid but that has safety concerns so I might be coming off it. I’m also exploring the role of mast cells as I developed mast cell activation syndrome and mast cells are apparently significant in biliary diseases.

I’m not sure what to suggest as I’ve struggled to find adequate medical help myself. I’m guessing you currently have a specialist such as a hepatologist or gastroenterologist given both the gastritis and PBC? Have you thought of trying another one if you feel like you’re not getting anywhere? I completely understand about GPs in that I’ve had no real help there either and they haven’t known what PBC is, or mast cell activation syndrome for that matter.

Your concerns are important and I really hope you can find some support. Currently I’m researching ways of calming mast cells which are involved in the pathophysiology of PBC. I think there often are answers and ways of addressing what’s happening in the body, but finding a practitioner who will work well with you on that is so hard. Please don’t lose heart and know you have support here at least. Take good care xx

[Readlots]

I’m sorry you’re struggling at the moment. Christmas, when everyone else seems to be having a good time can be especially tough. Cold and damp weather don’t help with pain. Just know that you are not alone and you can find a way to cope and live a wood life xxx

[DonnaBoll Administrator]

What a lot of suffering to bear for you.... I am so sorry all of this is happening to you. Have you thought about seeing a rheumatologist regarding all of the joint pain just to make sure it isn't something that can be helped? Feeling dismissed is not something anyone should feel by another person.. all to often, though, it happens. Health care surely leaves so much to be desired. It sounds too that maybe it would help for you to talk with someone. Do you know The PBC Foundation has a help line? I would strongly encourage you to contact them - whether you live in the US or UK. Their helpline number is [phone] or you can email them at [e-mail]/uk Please stay in touch...