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 | Feb 18 12:57pm
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 | Feb 18 1:17pm
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 | Feb 18 3:38pm
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❤️

Jump to this post

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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1 reply
bruizersmom | @bruizersmom | Feb 18 6:20pm

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 | Feb 19 9:24am
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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artemis1886 | @artemis1886 | Feb 24 7:13pm

Here is a list of labs to have run by a rheumatologist.
See a neuromuscular neurologist.
Have a emg / nerve conduction test
Biopsy for small fiber neuropathy.
I started keeping track of my symptoms and taking pictures.
I had a gland biopsy done by an ENT. Then went to an eye doctor diagnosed with Sjogrens and Lupus on top of my autoimmune neuropathy.It took over 7 years to get this diagnoses. I went to Boston to see a neuromuscular neurologist and she caught the Sjogrens then from there it’s was one of two things Lupus or RA. I took pictures of my face with the butterfly rash. All my autoimmune markers were high.
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1 reply
char8972 | @char8972 | 6 days ago
In reply to @catartist "Thanks for sharing! What a journey. Yes- that’s why I have done the genetic testing -..." + (show)
@catartist

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!

Jump to this post

My Rheumatologist recommended Acthar Gel. It stimulates your adrenal gland to produce natural cortisone when it senses inflammation. I hated prednisone due to side effects. I've been on a once a week shot for 6 weeks now and I am noticing a big improvement. My flares are milder and my pain level has dropped by 3-4 points. I'm nauseated the day I inject but no other side effects. You might want to discuss with your Dr❣️

REPLY
1 reply
char8972 | @char8972 | 6 days ago
In reply to @artemis1886 "Here is a list of labs to have run by a rheumatologist. See a neuromuscular neurologist...." + (show)
@artemis1886

Here is a list of labs to have run by a rheumatologist.
See a neuromuscular neurologist.
Have a emg / nerve conduction test
Biopsy for small fiber neuropathy.
I started keeping track of my symptoms and taking pictures.
I had a gland biopsy done by an ENT. Then went to an eye doctor diagnosed with Sjogrens and Lupus on top of my autoimmune neuropathy.It took over 7 years to get this diagnoses. I went to Boston to see a neuromuscular neurologist and she caught the Sjogrens then from there it’s was one of two things Lupus or RA. I took pictures of my face with the butterfly rash. All my autoimmune markers were high.

Jump to this post

I was diagnosed with Sjorgens 15 yrs ago. I was diagnosed with St 4 Lymphoma 5 yrs ago. After 2 yrs of chemo and immunotherapy I have been in remission for 3 yrs now. My son is a Dr of Internal Medicine. He told me there is now a proven medical connection between Sjorgens and Lymphoma. When he diagnoses Sjorgens he runs a cancer panel. This isn't to alarm you by any means. It's something you might want to talk to your Dr about❣️

REPLY
catartist | @catartist | 6 days ago
In reply to @char8972 "My Rheumatologist recommended Acthar Gel. It stimulates your adrenal gland to produce natural cortisone when it..." + (show)
@char8972

My Rheumatologist recommended Acthar Gel. It stimulates your adrenal gland to produce natural cortisone when it senses inflammation. I hated prednisone due to side effects. I've been on a once a week shot for 6 weeks now and I am noticing a big improvement. My flares are milder and my pain level has dropped by 3-4 points. I'm nauseated the day I inject but no other side effects. You might want to discuss with your Dr❣️

Jump to this post

Thank you! I will! ( next wk appt.). Is it a he’ll or injection. Do hate nausea! Lol

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char8972 | @char8972 | 6 days ago

It's a self injector. You press it into thigh. Slight burning. Nausea managed with ginger tea and doesn't last long. My son is a Dr of Internal medicine and he said it was a really cool drug and to go for it. It senses inflammation and produces your own natural cortisone.

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