Everything

Posted by shirley29485 @shirley29485, Aug 2, 2025

All these diagnosis’s. And I suffer from chronic fatigue and horrible daily pain. Still work and do what I have to with life. Im suffering and no answers. All these years.! I have so many autoimmune diseases and this is all i suffer from..ugh my never ending story.

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Profile picture for jdnc2023 @jdnc2023

I have known it for many years, so I don't recall exactly how I knew it. A google search on the topic will bring up a lot of information. https://www.google.com/search

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@jdnc2023 I read what you posted and then did some research of my own and found this on WebMD. I did find it easier reading.
https://www.webmd.com/vitamins/ai/ingredientmono-912/iron
I think it might be best to say, “It is safest to take iron in the amount prescribed by your doctor.
If you take iron in larger amounts, hoping it will work faster, it can cause serious health issues with your heart and liver.” Does that work for you? It’s always better to tell a person difficult information when you can back it up with facts (like you did) and to soften it.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@jdnc2023 I read what you posted and then did some research of my own and found this on WebMD. I did find it easier reading.
https://www.webmd.com/vitamins/ai/ingredientmono-912/iron
I think it might be best to say, “It is safest to take iron in the amount prescribed by your doctor.
If you take iron in larger amounts, hoping it will work faster, it can cause serious health issues with your heart and liver.” Does that work for you? It’s always better to tell a person difficult information when you can back it up with facts (like you did) and to soften it.

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That's a goid site. My point was that people shouldn't take iron pills thinking it will give them energy if theyre fatigued, as recommended by another poster.

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Profile picture for gently @gently

shirley29485, do you ever read Medical Mysteries https://www.washingtonpost.com/health/medical-mysteries/
They solve them all, sometimes after many years of suffering. After a thousand doctors, you might meet one that says--oh, yes. I've seen this before. I hope the suffering part of your story can end.

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Thank you for your kind words.. but its just never easy.. i will certainly check it out.

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Profile picture for covidstinks2023 @covidstinks2023

shirley29485, I'm so sorry. Praying for you right now. God Bless you and give you relief. Blessings....

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Thank you so much for you words. It’s difficult but it is what it is.. telling my story is all I want to do.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@shirley29485 You have never found a doctor who was able to diagnose you and treat your pain? Have you been able to go to a comprehensive medical center or a university hospital? The doctors there have extra education, research, and on-going education. Please try to call one in your city or state and explain your great need. Do you have anyone who helps you? Maybe they can help with finding the comprehensive hospital.
Can you try to find a hospital and get help for yourself?
Please keep me in the loop-I really care.
Becky

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Hello sorry for the delay.. I go to MUSC South Carolina. But, my ins only allows me in this network. My team of Drs are great! But, Lupus is always the question they ask me ( has anyone ever told you .. you have lupus?). I say no then it ends at that. Everyday is a struggle and mentally im okay for the most part. Sometimes I feel defeated and others Im just glad to have woke up. I push through each day like it’s my last. If that makes any sense. I have gone to pain management . Lower back shots.. never help.. ugh

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Profile picture for dlydailyhope @dlydailyhope

@shirley29485
I’m sorry to hear of your suffering. What have you been diagnosed with and how are you currently being treated for your symptoms/conditions? Do you have a support system in place and are you getting counseling to help you cope?

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I have many different and rare things going on .. Bronchiectasis, PBC cirrhosis, ANA and AMA positive. Positive Connective tissue. AT3 Positive 3 TIAs, AFIB and GI issues. Barretts Disease and probably a few other things. I use a compression vest 2 times a day.. and so on.. very tired of it all to be honest. Support system no.. i care give to everyone else. If they cant see the problem they dont understand the problem.. sometimes that goes for drs also.

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Profile picture for pml @pml

Shirley,
I'm so sorry to hear of your terrible situation! How awful for you!

Do you take iron tablets? Iron will help with fatigue. Also eating foods with iron in them helps too such as steak, hamburger, beans etc. Gently's suggestion about the Medical Mysteries sounds like it might help you and also Becky's suggestion of finding a major hospital and trying to get help there would be useful.

Prayer also works. Just talk to God and ask for his help. He made you and he can fix you! I'll say a prayer for you too.
I wish you the best.
PML

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My iron is good had infusion, b12 is good also. I go to a major hospital MUSC Charleston SC. Infusion was done awhile ago.. and i have been good lately. I do get iron deficient. But it has been good .. ty for all these kind words

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@jdnc2023 I never knew about iron pills being dangerous. Where did you get this information from?

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It can lead to iron overload

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Profile picture for shirley29485 @shirley29485

I have many different and rare things going on .. Bronchiectasis, PBC cirrhosis, ANA and AMA positive. Positive Connective tissue. AT3 Positive 3 TIAs, AFIB and GI issues. Barretts Disease and probably a few other things. I use a compression vest 2 times a day.. and so on.. very tired of it all to be honest. Support system no.. i care give to everyone else. If they cant see the problem they dont understand the problem.. sometimes that goes for drs also.

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@shirley29485
I am so sorry. I can relate with caring for everyone else and not receiving care in return or having a reliable support system.

It sounds like you're dealing with a lot of complex health issues, and it's completely understandable to feel overwhelmed and fatigued by it all. Managing multiple conditions, especially when they are rare or not well understood, can be incredibly challenging. It’s also tough when you feel like your support system isn’t there for you, especially when you’re busy caring for others.
Having conditions like bronchiectasis, PBC cirrhosis, and Barrett's disease can significantly impact your daily life and energy levels. The fatigue you’re experiencing is a common symptom among those with chronic illnesses, and it can be exacerbated by the emotional toll of feeling unsupported.

Make sure to focus your energy on caring for yourself, following your care plan, taking medications and seeking emotional support through counseling to help you cope.

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Profile picture for shirley29485 @shirley29485

Thank you for your kind words.. but its just never easy.. i will certainly check it out.

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The sometimes give you hope. Bless your struggle with some luck.

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