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Posts (10)

Oct 9, 2019 · UCTD, low MCV, low MCH and low neutrophils in Autoimmune Diseases

Thank you for voicing what so many of us feel! Grateful to have a non-life threatening disease but tired of the fatigue! I am lucky enough to get a 4-5 good energy days in a row but after that I am exhausted by 5 pm or earlier. I also try to stay active but it’s tough some days.

Oct 9, 2019 · CREST Syndrome in Autoimmune Diseases

@fighter It is the limited form of scleroderma and an acronym for

Esophageal dysmotility

which are the defining characteristics of the disease.

Oct 4, 2019 · CREST Syndrome in Autoimmune Diseases

@shasmith I have Undifferentiated Connective Tissue Disease with antibodies for CREST. I went to Mayo and they were very thorough in their evaluation (as long as you make the requests for diff appointments). They even do a nail fold study and a circulation study to quantify Raynauds. I think they fit 15 appointments into 1 week, which was impressive. They couldn’t do much for me but your symptoms are much more specific. Let me know if you want more info on the diff specialists/which ones I saw.

A question for you as well- do you have fatigue and brain fog?

Feb 23, 2019 · Frustrated and continuing to look for diagnosis in Autoimmune Diseases

Hi @omgthehumanatee. I am a 19 yo female and am similarity frustrated by my inability to function like people my own age. I have a similar list of symptoms (- the migrains, sinus issues have subsided). I had been thinking I am getting lazy in my studies or making excuses but your post has made me wonder if it’s partially the disease. As a college student I am inferiorated by my inability to remember information I have drilled over and over. I am also avid runner and having issues with fatigue, constant muscle injury, and soreness. Frustrated because cardiac workout is only way to tire myself out enough to get good sleep.

I was lucky enough to get into rheum 1.5 mo after my ANA came back high. I went into doc with dizziness, falling asleep with hr in 40s during class, and weakness. Rheum thinks I have MCTD based on titer, likely CREST syndrome. However, Derm diagnosed lupus because of malar rash. Also unknown whether my hr is slow because of cardiac fitness or bradycardia. Recently my hands and fingers have become swollen and sore. Makes taking notes painful. I come home exhausted from school at 5 and can sleep for 10 hours, easily.

Started Placquinol nearly 5 mo ago, it has helped quite a bit but not totally. Also take vit d (morning!), vit C, vit B, fish oil. Also eat gluten free, penut free, and limit red meat, to keep gi issues at bay.

Only ways for me to make it through week: I optimized my schedule to be hard Tuesday, Thursday. I sleep in on Wednesday. By Wednesday I am talking Acetominophen 4-6x a day to minimize swelling and fatigue. Never drank caffeine before, now start day with it and supplement with Monster to keep self moving. I am a mess by Thursday night, sometimes Wednesday. Every week. Used to be active/ studious all day every day. I use weekends to recover (after hard workout Sat morn). I also have to wear gloves if AC inside because my body cannot regulate temp.

Have they tested antibodies for you? Primary doc should be able to do that. Also, I got into Mayo without definitive diagnosis- ask rheum (when you get in) to write down best guess as to what you have as tentative diagnosis.

Hang in there.

Jan 22, 2019 · Autoimmune disease and temperature regulation in Autoimmune Diseases

This is how it is for me too. One moment I am freezing cold and an hour later I am boiling.

Jan 18, 2019 · Autoimmune disease and temperature regulation in Autoimmune Diseases

Yes @hopeful33250 ! Tentative UMCTD diagnosis as well as SCLE. Waiting for Mayo appt to get some more answers.

Jan 18, 2019 · Autoimmune disease and temperature regulation in Autoimmune Diseases

Have you tried Vitron C? The Vit C is supposed to help with absorption.

Jan 18, 2019 · Autoimmune disease and temperature regulation in Autoimmune Diseases

@peach414144 I do take iron supplements which could be why anemia doesn’t show up on blood tests. I also have bradycardia but my hr has been elevated 10-15 above where it was before Plaquinol.