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How do you plan your day and conserve energy? Are you a Spoonie?
Autoimmune Diseases | Last Active: Oct 4 9:32pm | Replies (98)Comment receiving replies
Wow, is this discussion hitting home! I’m still in the early stages of figuring out what is wrong, even though I should be further along. I travel to Mayo in March and praying to gain some knowledge of what is causing my extreme fatigue, cognitive issues, and pain. I thinking knowing some of the “why’s” might help me get in a groove of a “new normal”. Over the past two years, my primary care has referred me to a neurologist, rheumatologist , and endocrinologist in search of answers. Tests galore and we have some possible small pieces of the puzzle, but mostly I’ve been going around in circles between the three specialists. I love the idea of the Spoon Theory! At this point, it’s just hard to know what my limits are since I really don’t know what’s wrong. I’m doing a lot of journaling to see if I can track triggers, but so far, there is no rhyme or reason. I’m looking forward to the trip to Rochester (can’t even imagine that level of medical care). As I’m sure other’s have faced, there is that little bit of fear that we still won’t have any answers.
Replies to "Wow, is this discussion hitting home! I’m still in the early stages of figuring out what..."
sounds like my story
@nana75165 I’m glad you found this discussion! I felt just like you 4years ago. So many vague symptoms and the doctors saying it was all in my head. Doctors at the community hospital just had no clue. After an MRI, we went to the university hospital and a doctor knew what I had! Yay! Just keep on journaling ! Remember, try not to be afraid when you go to Mayo—they want to help. Be sure you keep in touch with us!
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@nana75165 Welcome to Mayo Clinic Connect! I am glad to hear you are looking after your own health, as confusing as it may seem right now. Thankfully, your primary care dr has sent you on to specialists in an effort to figure your case out! It's frustrating, isn't it, when the answers are not clear cut? I have found that while lab tests and all show clear values, putting them all together and coming up with a diagnosis to work with can be a while coming.
The idea of journaling is useful not only in tracking your symptoms, but also to give you an outlet for your thoughts and worries. You may be interested in this discussion thread: https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
Being able to explain your feelings and how your issues affect daily living, can certainly be helpful for your medical team. Watching any patterns that emerge may assist in figuring things out [time of day, foods eaten, activities, etc].
I hope you will keep posting here, and let us know how we may assist you in this journey? And, I will be interested to hear your opinion of the Mayo Clinic, and what they find out with you!
Ginger