@devonsdad2008 Yes, fatigue has been my worst symptom with Sjogrens. On December 29th, With my doctor’s advice, I did the Whole 30 diet. Before the 30 days was up, the first thing I noticed was that I had so much more energy. I’ve been feeling so much better since changing my diet. I am now on the Paleo diet, also directed by my doctor. She has helped me more than anyone. You may want to try it! I found all my information online, even a lot of good recipes.

Hello @devonsdad2008 -- I see this is your first post and would like to welcome you to Connect. Thank you @kyjeanne and @robbinr for posting helpful information - that is what so great about Connect, patients helping patients. You may also want to take a look at the following discussions:

– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/

I also found this TED Talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis commonly known as chronic fatigue syndrome beneficial:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
John

Kyjeanne, that is what I have been looking into and reading about. I have not heard of that particular diet but will absolutely look into it. The medication didn't work for me and I won't take the risks with any other med. When you have an illness like this, you have to keep looking for a way out! Thanks for the great information! I am super glad it is working for you!

Billy

John thank you! I am glad I found this forum. Seems to be some very friendly and helpful people here. I was expecting a response days later. However I am sure this site is a wonderful and helpful place to visit.

Thank you for the information. I came across Ted Talk not to long ago and really liked the channel. However I did not come across CFS talk. Will definitely look that up as well as the other information you posted.

Thanks for your help!

Billy

I just watched the Ted talk and it brought tears to my eyes. It is such a crime how we are treated. I also have Median Arcuate Ligament Syndrome (MALS), 3 surgeries and pain and gi issues from that, yet I am told there is nothing wrong. I don't know what is CFS, what is MALS, then I start thinking is it in my head. Some of these drs. make me feel that way. There is no way, I didn't imagine 3 surgeries, I wouldn't have been awarded social security disability,,but why can't I find someone, dr., to help me. My last hope right now is I am waiting for the cardiology dept. to call me back with an appointment date, and possibly neurology. My primary and vascular surgeon suspect POTS. The saddest part is that the GI dept. said that maybe I need to go somewhere where they specialize in my rare disease, MALS. I'm sorry but I thought that is what Mayo was. I don't want to be negative, but I feel like the rug was once again pulled out from under me. What I thought was finally going to be my answers and hope, just the total opposite.

@jmmb I can't imagine to know the pain and suffering you are going through. All I can do is tell you to try and stay strong, keep asking questions and pushing for answers. There is an answer out there for you somewhere. No one knows how you feel except you and that makes you your best advocate. I'm no medical expert and have no medical training but I rely on learning as much as I can about my diagnosis, current treatments, research being done for the health problem I have, and trying to connect with others with similar health problems.

I did a little research and found an article on MALS that may provide a little more information for you. It is research article by several Mayo Clinic doctors.

Median Arcuate Ligament Syndrome: A Nonvascular, Vascular Diagnosis:
-- http://journals.sagepub.com/doi/10.1177/1538574411406453

Hoping you find some answers and a treatment that helps.

John

I'm so sorry to hear the pain your in .I can't imagine either hopefully the article John sent you will give you some new info If you like I will put you on my prayer list I have prayer partners all over.We just prayer for a girl who was dying now she's eating solid food and walking With many God is in the middle Turn your eyes upon Jesus.Let me know .Love @light Linda

Thank you John. I have been trying so hard to be my own advocate. I have collected research, facts, talked with other patients with same symptoms and frustrations, yet I can't get anywhere. I keep getting shot down. That is why I was so crushed with Mayo. I felt that was my last hope. However on some other MALS only groups there are other places I can send my info to for consult, however, they are in other states, and long wait time because there are so few that know and understand MALS since it is so rare, but you do what you have to. I have recently got in touch with my original surgeon who preformed my first open and actually published an article on my case since it was so rare. He is in Texas, I am in Az, so that is not to far. I will be sending my latest films and go from there. There are just so many GI symptoms that come from this I really need a good GI dr. as well. The article you sent was very good, thank you. Unfortunately there are quite a few like that, I have them, and yet I still hear, ganglion has nothing to do with it, or you have sufficient flow, you shouldn't have those symptoms and get pushed aside, like its in my head or something. My fear is that as time goes on, it is causing more damage to my insides as I have seen with others. Many have gotten pancreiatis,don't know spelling, POTS, EDS, and I don't need that. I already have chronic fatigue syndrome. I was managing that well after a few years of pure hell. The surgery and all of this brought it out. It is just so frustrating when I feel I have all this, why wont someone listen!!
So thank you for listening.
Jill

So true lioness..

Thank you that is so kind of you.