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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)
@becsbuddy

@steph24 Welcome to Mayo Clinic Connect! I’m glad you joined the site! Here is Mayo Clinic’s information on ME/CFS.
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510. Mayo also, just opened a ME/CFS clinic. you might call their main number for information. I’m sure other members will respond to you and give you some helpful tips.

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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

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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

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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!

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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)
@becsbuddy

Hello @sundance6 I’ve been reading all of your helpful posts in the past and now you’re asking for help. CFS seems to be a difficult disease to diagnose (as are all autoimmune diseases). It gets very frustrating, doesn’t it? You said that you’re seeing your PCP this week—do you think he/she can give you a referral to a rheumatologist? They are the doctors who are supposed to be up on autoimmune diseases.
I added this discussion about getting a proper diagnosis. See if it might give you any tips
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/
Let us know what your doctor says.

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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!

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rayjay535353 | @rayjay535353 | Mar 19 1:11pm
In reply to @steph24 "Late to the post but perhaps this can help someone. I have been battling a Chronic..." + (show)
@steph24

Late to the post but perhaps this can help someone. I have been battling a Chronic Fatigue Syndrome & Fibromyalgia diagnosis since 2017. This coupled with Autoimmune Diseases and reactivated EBV. An infectious disease doctor first diagnosed me with CFS/ME, as it is seen as a disease of exclusion. So between infectious disease doc and an integrative med doc I ruled out every other possible cause for my debilitating symptoms. I fought the diagnosis for years hoping autoimmune disease or reacting EBV was my issue. In my experience doctors who go to traditional medical schools do not understand nor believe in Chronic Fatigue Syndrome, they generally do not believe EBV reactivates and have little to no understanding of Fibromyalgia. Fibromyalgia has become a blanket diagnosis when they don’t know what you have and can offer no treatment. Like you I saw doc/Rheumatologist that thru out the Fibromyalgia diagnosis with no treatment plan other than exercise. Not listening to how sick I was. There are a few organizations/universities across the US that specialize in CFS/ME. You can not treat Fibro and CFS/ME the same as Post Exertional Malaise is huge part of CFS where with Fibromyalgia the docs always say excercise as part of treatment. They do not understand that exertion mental and physical will cause a CFS crash. Bateman Horne Center in Utah excellent resource for CFS/ME. Search the net and YouTube for doctors that understand the disease closest to you. I’m on east coast, NC and presently travel to Florida for treatment. Initially I went to Utah. Getting to a good specialist that has knowledge of disease will help you discover how bad you have it and they can offer some supplements/meds that treat your symptoms and support your mitochondrial health. They also will advise you on pacing and resting techniques to prevent crashes. If you have CFS the mitochondria in your cells can not create nor store energy correctly. So supplements that support mitochondrial heath are a good start. Good luck!!

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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

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