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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hensa | @shenne | Jan 31, 2023

In reply to @beltonite410 "MS related fatigue. Adderrall is a life saver. Or Provigil." + (show)

I’m on the generic for provigil which is modafinil. I did use the brand name for many years. I’m on 400 mg each morning. I also tried Adderrall. It just seems like no medicine makes any significant improvement. I’m glad they work for you.

hensa | @shenne | Jan 31, 2023

In reply to @macrdo "I can relate but have found a reg p.t. regimen that works for me. It sounds..." + (show)

@macrdo

I can relate but have found a reg p.t. regimen that works for me. It sounds nuts to exercise when you hurt so bad but walking is best overall I have found. I thought my rheumatologist was nuts when I could hardly get off my couch and walk to the bathroom but I trusted him ( which I don't do easily) and did what he said. Went from going out door to end of grass and back then each day I would take just two more steps. Eventually I worked my way up to 3 miles one way and back. Due to other difficulties in health now I am no longer able to go that far but do in home physical therapy routine and still walk a few blocks at a time. I used to be on gabepentin at 3200 mg a day plus diladid pain meds 3-4 times a day. I started using cbd gummies. I quit it all and only have to take an aleeve here and there when have a bad flare up. I am so relieve from all muscle aches and pains. My trigger points are not in flare constantly anymore. A doctor can do only what they are aware of thru guidelines. IT IS UP TO OURSELVES to find out what works best. I am now only on my med for chemical imbalance and vit d3 in winter as don't do much outside then so don't get enough sunlight. Just so others know I also suffer with Ehlers Danlos Hypermobility. Interstitial Cystitis, Artificial Hip, Chronic Fatigue, Fibromyalgia, due to EDS have had 3 back surgeries, neck surgery with plate and screws, and shoulder anchor put in. P.t. has been a life saver for me. I have been doing this for years and any time I stop for more than two weeks I start getting weak again and pain and flares start back up. God made our bodies to move not be sedentary. The food we eat is a big factor also. All the quick convenient foods today are JUNK. Get back to the basics of fruits and veggies with little meat. Stay away from the sugar and refined processed foods. We all want a magic pill to cure us--- it's not that simple and honestly they are actually more harm than good. Just put more toxins in TBE body that we have to try to fight off. Hope this helps someone get to a better place in living !!

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That is great! I started some pt too. I had to start at a very low level. I could not do anything like I used to do.
Unfortunately the extreme fatigue never changed for me.

zen9 | @zen9 | Jul 7, 2023

I got CFS last August 2022. two week after the 3 rd booster. I am dizzy all the time, sleep 9pm-9am and take two your naps some day. Always feel tired with brain fog. I take many supplements with no help. I am against scripts from pharmacy. Eating veggies, fruits chicken, lamb and fish. Salads daily. Would love someone to talk to.

dorma | @dorma | Jul 8, 2023

In reply to @zen9 "I got CFS last August 2022. two week after the 3 rd booster. I am dizzy..." + (show)

Sadly, there seems to be nothing out there that actually helps with CFS. I've had it for many years. A few years ago I developed extreme weakness along with it; so weak that my knees buckle and I have no choice but to lie down. *The minute I wake up in the mornings, I take a green tea capsule. No miracles, but it really does help me to get moving. Usually last 3-4 hours. Many days I have to take another in early afternoon. I also take Modafinil for daytime sleepiness. The wonderful plus to it is that it helps my depression! I have tried every kind of anti-depression medication, and my body will not tolerate any of them, so this was a bonus blessing. I wish you the best in dealing with this.