Navigating a New Diagnosis, Invisible Illness, and Feeling Overwhelmed

Hi Marlena,
I know exactly how you feel and I understand the mixed auto immune disease. I have sjorgens, fibromyalgia and osteoarthritis. I'm beginning to think the doctors think I'm acting. But that's okay, I tell myself God knows and I can ask him anything. I'm 73 yo female and had sjorgens a out 10 years before a lady rheumatologist asked me "does your mouth feel like it's on fire" I said yes, she said sjorgens then ran every test under the sun to confirm it. Another rheumatologist told me more than once he didn't think I have sjogrens, needless to say don't see him anymore. And some doctors think that sjorgens only affects your eyes and mouth. Sure wish that was the case. Marlene we can't give up and you might have to try different doctors. I was ready to move back to Florida then I read your post and thought about it and still am, yes Mayo Clinic is rated the best in America and that's why I was thinking about moving back to FL. Your feelings on family things is normal too. I was so tired last night that I had to tell my son and his wife no to an invitation to dinner. I was in bed at 6:30, been having migraines going to bed and getting up. Don't understand it, very tired like you are and weakness to walk fearing of your leg giving out, with no warning. So keep parking in Handicapped and if you will ask your doctor for a form for handicapped tag and or sticker that you can hang on mirror. Have a nice day Marlena and feel free to text back. We are not alone in this boat.

Don't be sorry for something that is out of your control. I have a temporary handicap placard good for 6 months that I can renew once before I have to apply for a permanent placard. If I can find a close parking spot I don't use it but I will if I need to. I have PMR and SMM. I don't have to tell people how I feel, they can see it. There's things I don't do because I know when I'm having one of those bad days, and I don't do very many things that require a lot of walking unless I know there's somewhere there that I can park myself when I need to rest. I go to bed early when I need to, nap unapologetically and say no when I have to. I'm 73 and I've only been dealing with this for a year so I'm still getting used to it.

Hi Marlene.
These autoimmune diseases are so hard! I’ve been dealing with them for 30 years, diagnosed with Lupus at 37 years old. Everything in the process is difficult, from dealing with the scary symptoms, then trying to get Doctors to NOT dismiss them & treatment, trying to find ones that work and don’t cause bad side effects if you’re lucky enough to get a diagnosis to start. It all does such a number on your head! Trying to accept the changes these diseases force you to make, for me it was like grieving. Such a sense of loss that I felt; couldn’t do some of the activities that I loved like hiking, pickleball, tennis etc. I was angry at times, went into denial then depression before I finally accepted “what is”. Some years over the past 3 decades have been better but then when a flare hit, I experienced those feelings again Now, I get to acceptances a lot quicker. This past March & April I got really sick; worse than any Lupus flare. I ended up at Mayo ER, admitted for 2 weeks in a major autoimmune firestorm. After a biopsy of both temporal arteries I was diagnosed with Giant Cell Arteritis. I’m still recovering but with a great Rheumatology team at Mayo & medication, slowly healing.
I have learned so much on this latest part of my journey; gratitude, acceptance, listening & respecting my body with healthy eating, exercising the appropriate amount of- not pushing on rough days & finding ways to calm my anxious racing mind with meditation. Going to my safe, quiet mindful place doing my artwork.
Really important is honestly communicating with people in my life. Well meaning family & friends sometimes don’t understand unless they have chronic illnesses. They look at you & remark that you look good, not knowing how bad you really feel. Makes you feel like you have to justify or prove your illness, even to yourself.
All of this is why sites like this & support groups are so important. These folks really get it because they’ve been there. The sharing of experiences & knowledge is so helpful.
And remember it probably won’t always be this intense. It’s always more overwhelming at the beginning or when a flare hits, feeling like this illness is taking over your life every day.
Knowledge is power so stay connected with others in this forum & do some of your own research ( not obsessively though) & have good communication with your doctor; Don’t be afraid to ask a lot of questions.
Hang in there & know you are definitely not alone!!

DID I WRITE THIS?
This is me!
I cannot text much now but I had to comment because you are telling my story.
Hang on, took me 18 yrs to get diagnosed. More to follow.
And please share any help Mayo gives you. Take care❤️

Your story is similar to my story! I feel so much like I have an invisible illness, and most people in my family, and friends, just don’t understand, commenting that “Well, you look fine, to me!” The extreme fatigue that I frequently get, is, actually, debilitating! I have been diagnosed with CVID, by Mayo Clinic staff, and in the process of CIDP, evaluation of ascending polyneuropathy! So, it’s amazing to me, how similar, our experiences, with having immunological disorders, seem to be!! Good luck to you! Hang in there!

All my life I couldn’t understand why I kept getting sick - it was almost as if I didn’t have a fully functioning immune system … fast forward to my thirties where my back, shoulders and hips hurt so badly I couldn’t get out of bed. I’d run low grade fevers, and then the serious illnesses began one after another that no one could pinpoint. First came an RA misdiagnosis, then an axial spondyloarthritis diagnosis, psoriatic arthritis, and then I was placed on steroids while we trialed different biologic drugs. All leading to a hospitalization last year during an especially brutal steroid taper that revealed steroid myopathy, adrenal insufficiency, a clot in the brain and dermatomyositis.

I too look ok - except I’ve currently got a torn shoulder (thanks connective tissues disease!) so I’m in a sling and from the myopathy, at 58, I now need a walker. I can’t walk much and I find the fatigue crushing.

Someone who asks something of me that is too much (who maybe doesn’t realize my limitations), rather than just say “no, sorry” I tend to reframe the ask … if they want to know if I’d like to go shopping and then dinner, I simply say that the walking will probably be too much for me, but I’d Iove to meet them for dinner after they’re done shopping. I used to do a lot of cooking for the family holiday meals to contribute - now I order a shrimp cocktail from the fishmonger and a charcuterie board instead of spending days leading up to the holidays cooking. I’m figuring out ways to participate so I still feel like I’m contributing, even if it’s not in the way I used to.

I still don’t technically have a diagnosis as I’ve developed neurological symptoms now that don’t fit with any of the diagnoses so I’m UCTD currently. I think that’s the hardest for me. It always feels like we’re behind the 8-ball, never in front of it. I’m currently on Rituxan, Methotrexate, Medrol and SCIg - and I’m still not sure this is going to be it, because as I’m tapering on the steroid, my body is starting to ache more.

I’ve become comfortable using the accommodations because I’ve reasoned with myself “What are the alternatives? Falling?” I’ve had enough falls and I don’t want anymore. I don’t really care what people are thinking and you shouldn’t either. They’re not the ones that are going to wind up in the ER - we are!

I try to deal with “the conversations” with as much humor as possible. My friend asked me last week how I was feeling and I responded “Not bad! I have a sky diving session later today. Wanna come?” We both laughed as she knows I can hardly move. Then I filled her in on my week’s SCIg shenanigans and what an asshat the neuromuscular doctor is. Everyone is different, but I arrived at the conclusion that nobody wants to ask me how I feel and listen to me complain endlessly every week. I save that for when things are really too much and I am truly overwhelmed. You shouldn’t have to pretend you’re okay if you are having an especially bad day or if you got distressing news … but if nothing has changed and it’s the same - I don’t know how complaining about it all the time makes it any better. I have a friend who does this and I can’t spend longer than an hour with her for this reason. I can only take her in small doses lol.

My best advice is find something that you’ve always loved to do and can still do, even if you have to modify it to feel connected to who you used to be. For me that is cooking. I can’t do the large scale cooking for 20+ people like I used to do, but I can cook on a smaller scale and still do when I’m up to it and just ask for help with moving the heavy pots or draining pasta etc. It’s my mindless happy place and reminds me of the better times in my life with my husband and children.

I hope that you’ve found a good drug regimen that is helping with your symptoms. A therapist specializing in chronic illness may also be helpful in the beginning as you start navigating this journey. It gives you an outlet to vent that isn’t your family and friends. Best of luck. Pauline

I’ll just add what I experienced. I have been suspected to have several autoimmune conditions by neurologists, rheumatologists, endocrinologists, ophthalmologists, etc( positive ANA, ) for years, though only confirmed Type 1 diabetes and psoriasis. I won’t list all my other symptoms but the muscle and joint pain (sore, stiff, knots) has been chronic and a mystery.

Recently, my dermatologist prescribed a med for me that I later learned treats Lupus. I don’t have Lupus. Still…..my muscle and joint issues are gone! I have no explanation. Instead of getting dropped off at the handicapped area by my friends and slowly making it to my seat, I lead the way, walking faster than my younger friends! Climbing stairs is no issue. I work out most everyday day without pain! I have plenty of energy to do everything I want to do. I still have some issues, but they are manageable.

Good luck with finding something that helps. I’m seeing my rheumatologist next week. She may have explanations for my experience, but if not, I’ll try to continue on this medication. I may never understand what caused my multi system problems. Everyday I thank God to be pain free! So, there is hope. Always keep hope alive.

@celia16 if you don't mind sharing, what is the medication your dermatologist prescribed..
Thanks, I have been diagnosed with several autoimmune diseases. Take care, God Bless ❤️

I was going to ask the same thing!

@donna2008 , It’s Hydroxychloroquine. I’m now on maintenance dose. The results were quite remarkable. I can’t be positive it’s what helped me, but I did nothing else different. There are risks with this med, but…..it’s worth it for me. It might not work well for everyone.

I recall sitting in doctor visits and talking about how sore my legs, arms, shoulders were. Like bruises under the skin. I saw ortho doctors, rheumatologists, neurologists, etc. Just didn’t know why. Negative for RA.

Good luck! It’s so nice to just go about my day feeling good! So grateful.