Help with Chronic Fatigue Syndrome

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

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

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!

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!

Hi all, I suffered with CFS for 5 years. It was at the point where I couldn't get out of bed, and had to leave a good job. I researched everything possible but there weren't any answers from anyone that I saw. Finally I read about a doctor that only worked on CFS and showed terrific results. I called his office and was told that I had to submit a complete history of when it started, and everything I've been through since then. I typed up 2 pages and sent it along to his office. A few weeks later I received a call that he agreed to look at my case. I was given various tests to take for when we have our Zoom call. He hardly sees anyone in person, but it didn't make any difference to me. I was given a phone appointment for 4 weeks after the initial call. He was an older gentleman that new everything about the problem. He spent a good 1 1/2 hours with me, gave me a load of instructions, plus gave me 2 scripts. One being an anti-depressant and a drug that is similar to Gabapentin. It's been a month since my appointment with him, and it is gone! Hard to believe I know, but I get up at 6am ready to go.
I think of it as a miracle. Dr. Natelson at Mt. Sinai in New York City. Good luck

@madnar0019
Do you still have symptoms of SFN? I have been battling this since being diagnosed in 2011. Was the Vit. B Complex & Folate 800mcg for the SFN and is it two medications or one? I am on Nortriptyline, refusing Gabapentin, Lyrica, etc.

@susanmaple
I had numbness in my toes and pain in my ankles and hands. At the time, I thought the numbness was from my lower back due to disc and compression problem. Learning more about what SFN was I
figured that was probably the real cause (small tissue fiber biopsy was positive)
The folate 800mcg and B12 500mcg was due to a high homocysteine level— I had a folate deficiency. It was my Neurologist who did a battery of autoimmune blood levels to see if there was an underlying cause of the chronic fatigue. Was very helpful for his help since my PCP wasn’t.
Ps. Gabapentin knocked me out on the lowest dose and Lyrica gave me headaches.
Good luck and keep asking questions

@madnar0019
Thank you for your response! Sometimes there's so much going on, you just go from one thing to another, right? I've had psoriatic arthritis since the early 2000s and have been on Methotrexate since then. It was very difficult getting diagnosed as I showed no signs of psoriasis until 2004. In 2024, I had iron deficiency anemia and it took almost a year to find the cause, which was a hiatal hernia (I had no symptoms of the hh, even though more than half of my stomach was sitting on top of the diaphram!). After having surgery last June, I was so much better (with improvements in my vitals) that I noticed how bad the SNF was. The Nortriptyline and acupuncture have helped with the pain, but the numbness is worse in my hands and face. Since the 1990s, I have had burning mouth syndrome and now I'm reading that might be connected to the SFN. I have had respitatory problems after 3 Covid vaccines. By the way, I already take the B12 but will check with my rheumy about the dosage. Thank you for your help! Good luck to you too❣️