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Help with Chronic Fatigue Syndrome

Just Want to Talk | Last Active: Jul 16 4:21pm | Replies (62)

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@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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Replies to "Late to the post but perhaps this can help someone. I have been battling a Chronic..."

@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.

i am going to keep reading and noting your mail to me as there is a lot in there that is the first time me hearing as doctors will not communicate except if the test dont show i treat no mo....i tried out another primary doctor for the first time last week and in 5 minutes we were arguing about if the tests dont show then there is nothing he can do....that makes 11 doctors that have told me that and so i have spent several hours calling and talking to doctors and physician assistants and what i have found is that the insurance companies that insure doctors have put it to them that is they dont have a test or xray or mri or something like that to show for sure exactly what a patient has and what you treat them with then they will not insure....so...the AI is kicking in more and more now as some countries have already started robotics testing blood and prescribing not even seeing a human as what happened to my friend grandson as he went to japan to do some work and got sick and went to a clinic and he talked to a wall of dials and buttons and even gave a blood sample by sticking his finger in a gadget and then the machine told him to wait and a slip came out with a script on it and this of course after he put his yen into the machine and he went and got the script at a drug store and he took it and was cured so doctors are going to be in trouble when the AI fully kicks in....so i will do as you suggest and see what that brings up....thank you.....jim walley