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Invisible illness how do you cope?
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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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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1 ReactionI'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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1 ReactionThanks 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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3 ReactionsI 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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5 ReactionsHave you looked into Low Dose Naltrexone? It has reduced my joint pain. It has been a game changer?
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3 ReactionsHere 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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2 ReactionsMy 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❣️
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1 ReactionI 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❣️
Thank you! I will! ( next wk appt.). Is it a he’ll or injection. Do hate nausea! Lol
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.