1. < Autoimmune Diseases

Invisible illness how do you cope?

Posted by lsnchz831 @larissasnchz831, Feb 10 9:20pm

Hi im new to this forum, i wanted to maybe connect with people who are struggling the same as myself. I have multiple chronic illnesses, an autoimmune disease which
my doctors can really pin point to. I have so many symptoms that they consume my life, i want to ask anyone out there how do you cope any suggestions welcomed !

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char8972 | @char8972 | 5 days ago
In reply to @hammock117 "What Dr did the DNA testing? I have several autoimmune diseases...just had my face ultrasound due..." + (show)
@hammock117

What Dr did the DNA testing? I have several autoimmune diseases...just had my face ultrasound due to lump in my cheek. Radiologist called it concerning needs additional clinical response? What ever that is? Face swollen too dr thought from predisone which I avoid like the plague unless nothing else works. Watched my Mom shrank 6 inches never diagnosed that I know of.

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After 3 failed ankle surgeries my Dr. referred me Tulane in New Orleans. My son is a Dr of Internal Medicine doing a fellowship there also. I'm also adopted with no medical background. I was diagnosed with EDS which is a genetic connective tissue condition where I don't produce enough collagen so I'm really bendy and my ligaments and tendons are really weak. Between all my ankle surgeries, a total knee replacement and osteoporosis I've shrank 4 inches. Your face concerns me. Could it be swollen lymph nodes or is it a growth? Where on your cheek is it? Just know you aren't alone and Advocate for yourself. If I have questions, the Dr. will stay 10 extra minutes to answer them for me. I go in with a list😂I've fired Drs and changed Drs if I felt I wasn't being listened to. Advocate to your Drs and don't feel bad about being pushy

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char8972 | @char8972 | 5 days ago
In reply to @catartist "It is all unfair and a nightmare! I have spent half my life trying to understand..." + (show)
@catartist

It is all unfair and a nightmare! I have spent half my life trying to understand the slow dissolving of my muscles m, tendons and ligaments - bones and joints as well. And seeing Drs and doing tests. For NO cure and pain just worse for multiple issues. Now discovering DNA evidence that would explain some ( adult onset MDystophy - am 78 now with RA, and steroid dependence among other). No cure but important for relatives- who knew??!! And the ‘invisible! Drs always say I LOOK so good! Great! I FEEL terrible. Now that I can barely walk they take me more seriously…. Keep on! Find the distractions and gifts in there!

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I'm 61 and adopted. I have no medical background on either birth parents. After 3 failed ankle fusions my ortho ordered genetic testing at Tulane. I was diagnosed with EDS which is a connective tissue disorder. I don't produce enough collagen and my ligaments and tendons are really weak. Connective tissue affects digestion, swallowing, eye sight, etc. There is no treatment. My Rheumatologist sent a lot of bloodwork to Mayo and I was diagnosed with RA, POTS, Sjorgens Syndrome and Fibromyalgia. I was also diagnosed with St4 Lymphoma 5 yrs ago. Thankfully I have been in remission for 3 yrs now but the chemo and immunotherapy wrecked what little immune system I had. My 31 daughter is showing very similar symptoms and she sees my Dr. this week. I hate when people say how wonderful I look when I'm struggling to just go to the grocery store😂I look for the good and make sure to keep laughter in my life and my 5 grandkids are the best medicine!
I wish you well❤️

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2 replies
catartist | @catartist | 5 days ago
In reply to @char8972 "I'm 61 and adopted. I have no medical background on either birth parents. After 3 failed..." + (show)
@char8972

I'm 61 and adopted. I have no medical background on either birth parents. After 3 failed ankle fusions my ortho ordered genetic testing at Tulane. I was diagnosed with EDS which is a connective tissue disorder. I don't produce enough collagen and my ligaments and tendons are really weak. Connective tissue affects digestion, swallowing, eye sight, etc. There is no treatment. My Rheumatologist sent a lot of bloodwork to Mayo and I was diagnosed with RA, POTS, Sjorgens Syndrome and Fibromyalgia. I was also diagnosed with St4 Lymphoma 5 yrs ago. Thankfully I have been in remission for 3 yrs now but the chemo and immunotherapy wrecked what little immune system I had. My 31 daughter is showing very similar symptoms and she sees my Dr. this week. I hate when people say how wonderful I look when I'm struggling to just go to the grocery store😂I look for the good and make sure to keep laughter in my life and my 5 grandkids are the best medicine!
I wish you well❤️

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Thanks for sharing! What a journey. Yes- that’s why I have done the genetic testing - for my 3 and 8 grands! Tho not much you can do about where I am - very like you actually … and it’s the ligaments and tendons as well as muscles that are atrophying . Partially due to RA and steroid dependence - but I may learn what to expect better too - good and not so good? Keep on fighting - PT!

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bruizersmom | @bruizersmom | 4 days ago

I share your problem and frankly can only offer my frustration with doctors in general and my ever-growing anxiety. I feel like I need someone by my side, listening to me bitch about ALL of it, 24/7.

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moylandavis | @moylandavis | 4 days ago
In reply to @char8972 "I'm 61 and adopted. I have no medical background on either birth parents. After 3 failed..." + (show)
@char8972

I'm 61 and adopted. I have no medical background on either birth parents. After 3 failed ankle fusions my ortho ordered genetic testing at Tulane. I was diagnosed with EDS which is a connective tissue disorder. I don't produce enough collagen and my ligaments and tendons are really weak. Connective tissue affects digestion, swallowing, eye sight, etc. There is no treatment. My Rheumatologist sent a lot of bloodwork to Mayo and I was diagnosed with RA, POTS, Sjorgens Syndrome and Fibromyalgia. I was also diagnosed with St4 Lymphoma 5 yrs ago. Thankfully I have been in remission for 3 yrs now but the chemo and immunotherapy wrecked what little immune system I had. My 31 daughter is showing very similar symptoms and she sees my Dr. this week. I hate when people say how wonderful I look when I'm struggling to just go to the grocery store😂I look for the good and make sure to keep laughter in my life and my 5 grandkids are the best medicine!
I wish you well❤️

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Have you looked into Low Dose Naltrexone? It has reduced my joint pain. It has been a game changer?

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