Help with Chronic Fatigue Syndrome

@tigertotheend. Sounds like you’re having a terrible time with local doctors! Can I suggest that you try a comprehensive medical center or a university teaching hospital. The doctors seem to be 1 step ahead of most community doctors. Or Mayo Clinic has a group of country-wide hospitals. You can try going to one of them also, no referral needed. This website gives the locations of the hospitals.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
Have you considered Long Covid? Do you have a Long Covid center in your area?

Hi, @sundance6 Haven’t heard from you in a while! I thought that maybe you were doing great, but I guess not.
Here is the information from Mayo Clinic about ME/CFS.
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
When you see your PCP, you might ask if any hospital in your state has a program or clinic for ME/CFS. Mayo Clinic now has one, so others may, also.
What do you hope your doctor can do for you and CFS?

Sounds like you possibly may have what is called vaccine injury. Have you tried going to an Integrative Medicine Doctor (Eastern Medicine)? They think outside the box. That's who I had to go to and get treated for Long Covid. I am on many vitamins and am finally seeing some results. It's been 2 years. Several folks have listed their vaccine injury on her and the side effects. Many doctors are not versed in acknowledging this nor how to treat it. It's new to them.
I will try and find the vaccine injury comments and the side effects for you posted on this wonderful website.

Bless you and I will continue to pray for you. Keep me posted please.

thank you for the info....what you are telling me i have never heard of especially from any of these doctors around here....so please communicate when you can and i will keep searching for help....jim

Thank You! Very interesting article! Many things it talks about are what I experience.
Working with my PCP to get a heart monitor called I believe Hotler. We'll see what it comes up with.
As of last week I found a Daily Journal notebook that I can keep a record of how I am feeling all the time. I've modified it a bit to keep track of what I am eating, feeling and any medication I take. It's starting to so some interesting similarities in pain, fatigue and other things.
I've started to listen closer to my body! When it tells me I am on the edge, I walk aways from what I am doing and rest.
Thanks Will keep you posted!
From the Land of Enchantment!
Sundance(RB)

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!!

first to find out what this is....as all the doctors have no opinion ...just if the tests do not tell them they go mum and then i ask what are they going to do and the reply is always....well, if the tests dont show anything then there is nothing i can do......so hoping a doctor can do something is beyond them as they themselves dont know much unless a machine tells them what to do....i already take 4 pills for the heart ... supplements like magnesium, vitamin b, potassium, iron, vitamin d.....morning and night.....so at this point i am totally not impressed with a doctor as i can go on the internet and put my info into the system and get more answers than from a live person claiming to be a doctor.....no wonder this AI is taking over as doctors are a good example of depending on a machine to tell them what to do.....

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!!