Invisible illness how do you cope?

Inflammation?

Also, one of the hardest things is when people think you "look well" but are struggling. Like you said it's a silent disease.

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!

Hi,
That seems to happen alot. I had one Dr that believed I was OK as I was always smiling when I saw him! I asked him if he thought I was there just to fill his paycheck, that changed his attitude. Constantly being told I look good grinds me everytime. Yes I look good and even look younger than I am but that belies the fact my diseases are surely and slowly killing me from the inside. I just grin and bare it, it is not worth the explanation, yet again.
Cheers

Test for Lyme Disease. Sometimes takes several times being tested. The Igenex Laboratory is the one that finally diagnosed our family. Lyme is referred to as the Great Imitator as it attacks different organs in different ways.

Hi,
No need. I have Autonomic polyneuropathy. No cure and no treatment unless you consider suicide the answer.
Cheers

@betty41 There is now a blood test for fibromyalgia. The FM/a blood test is now used to positively diagnose fibromyalgia. The FM/a is relatively new, it has been used for about 10-12 years. So, yes, 30 years ago it was not testable but now it is. If curious, just google it.

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.

Had it done at UConn neuromuscular dept biopsy of glut there too. Very intensive overviews.
Don’t be afraid of Prednisone - it can help so much - actually keep you alive ( as it did with my asthma 40 years ago up to today. ). There may be a price to pay as there is with ANYthing you put into your body. I shrunk only 1/2 ‘ in 40 years. Bones are weaker but no breaks so far, but I get a Prolea shot every 6 months and it helps apparently.

You are not alone! I have Erles Danlos, POTS, RA, Sjorgens syndrome, Fibromyalgia, and peripheral neuropathy. I also had St 4 Lymphoma. Thankfully I am in remission but the treatment ruined what immune system I had. My Rheumatologist ordered 20 vials of blood and sent to Mayo for diagnosis. Some of this is genetic and my 31 daughter is having a lot of symptoms. She sees my Dr this week. All of these issues have overlapping conditions so it's confusing as to what immune issue is causing me problems. It's very frustrating. I also see a therapist who has really helped me deal with my medical issues. My advice - Keep on plugging away. Enjoy your good days and learn to self care when you feel bad. Laugh a LOT! ❣️