Help with Chronic Fatigue Syndrome

Posted by Sundance(RB) @sundance6, Feb 22, 2021

I need some help and advice with Chronic Fatigue Syndrome! I have been chasing Lyme Disease, Fibromyalgia for almost three years.
I recently read more about Chronic Fatigue syndrome. You can just about throw a blanket over the symptoms of all three, and they match. The information I've read was very helpful, but some symptoms and the way CFS works was very similar to what I have been experiencing.
Any help or reference material would be Greatly appreciated.
I'm seeing my PCP this Thursday. Would like to go in with some information.
From The Land of Enchantment!
Sundance(RB)

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tigertotheend | @tigertotheend | Jul 16, 2024

In reply to @becsbuddy "@steph24 Welcome to Mayo Clinic Connect! I’m glad you joined the site! Here is Mayo Clinic’s..." + (show)

thank you for contacting as i just went to another primary doctor and got the same answers...if test dont show then nothing can be done....so when i find some doctor to do what a doctor is suppose to do, i will be back on the site as this site has sent me several suggestions and stories that i feel i am in a club.....i am glad of that....and for some reason these mails are just now popping up on my computer so that is why i am so long in responding....thanks again........
jim walley

tigertotheend | @tigertotheend | Jul 16, 2024

i wish i could help as i just left my 11th doctor that after looking at tests which show low normals, saying there is nothing he can do...and i have 10 symptoms of a low thyroid, liver, and/or immune system...so hopefully when you get something done please put on here.....sorry for your ails.....jim walley

madnar0019 | @madnar0019 | Jan 29 12:59pm

Hi! My CFS started a looong time ago and took years to get the diagnosis. My PCP wasn’t very helpful thinking it was just depression— don’t except that if you differ with that answer. My Neurologist (hx of migraines) helped me to get some relief! He ordered a series of “autoimmune blood work” and a “Small fiber tissue biopsy” which revealed some interesting results! I was tested positive for Small Fiber Neuropathy and have a vitamin B/folate deficiency. This news was alarming since no other physician had done this— a vitamin deficiency! Needless to say, I was told to take Vitamin B Complex & Folate 800 mcg every day— made a significant improvement to my quality of life!
I still have CFS and the fatigue and other symptoms are still debilitating, but having some of things confirmed made me feel better! I’m afraid this journey is a long one…. *Ask your Doc to order a Homocysteine level— mine was high!

madnar0019 | @madnar0019 | Feb 2 10:28am

In reply to @becsbuddy "Hello @sundance6 I’ve been reading all of your helpful posts in the past and now you’re..." + (show)

Hi— I’m new to Mayo!
My Neurologist (migraines) was the most helpful to me with my CFS. My PCP was convinced it was depression and I needed to exercise more and my Rheumatologist is wonderful, but just focused on my Rheumatoid Arthritis. My Neuro ordered key autoimmune blood work, an MRI brain (R/O MS) and a small skin tissue biopsy. The results were surprising, I was diagnosed with Small Fiber Neuropathy and a Vit B/folate deficiency. Who knew, no one took the time to order them before— a vitamin deficiency too!!
My journey was a long one (yrs to Dx) and I believe it started when I contracted Mono (around 2005) since the fatigue and other sx never subsided, but worsened. My advice to anyone with what seems to be CFS to do their homework. Read as much as you can about it, document dates and symptoms and find a good physician who can R/O the obvious. There are many tests & time table to get to the CFS diagnosis, but the sooner you know you can start to work to feel better. I have flares and am learning what can set them off— this last week was bad! (I have so many medical things going on because of this Dx…. Good Luck!