What Are the Symptoms of CHRONIC FATIGUE SYNDROME (Myalgic Encephalomyelitis/CFS,SEID)? Doc Explains

What is chronic fatigue syndrome and what are the symptoms? I discussed in this video.

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#chronicfatigue #chronicfatiguesyndrome #seid #me/cfs

[andylopez]

I’m a 22 year old male and I was diagnosed early 2021 after testing positive for CMV and reactivation of EBV. At first, they told me I had post-viral fatigue, therefore, I tried to approach recovery doing exercise not knowing it was bad for me. I hit my lowest summer 2021 where I felt really really ill, mostly house-bound, with my symptoms being: swollen glands, sore throat, immense fatigue, unrefreshing sleep & post-exertional malaise. This, of course, caused me a huge state of depression, google kept telling me I’d be like this for the rest of my life.


In August I talked to one of my moms friends who had CFS and took a few years to recover. I think talking first-handedly to somebody that considers herself fully recovered revealed the very real but not so known possibility of recovery. And this is where the biggest mindshift in my illness took place.


As of today, I’m feeling quite better, at about 60-70% levels of functionality. I can go on 1 hour walks and do light weight exercises at the gym (NO cardio). I rest a lot, try to pace. Drink a lot of water. Take some supplements my doctor prescribed me. Also going to therapy has helped me, trying to maintain a positive outlook and not dwell on the bad things.


Thanks for acknowledging CFS doctor and lots of love for all you out there, I know how hard it is ✨🤍

[sassycnote]

Thank for discussing this. It is something that I suffer from and its not fun.

[margaretkur]

Doctor, you sound so much better! That's great. I'm 66y10m and was diagnosed with CFS many years ago (shortly after 2000 but unsure what year) by my primary care physician who retired years ago. I won't list all my diagnoses here (just remember me as the "atypical reactor"😁) but put them together and believe me, I'm tired most of the time. It got worse as years went on. I was a hospital coding specialist and dept safety coordinator for many years and as senior coder was laid off. Got a temp desk job and was trying to get disability for another dx plus I have a separate syndrome (cluster of multiple symptoms) that now recurs about every 5 weeks but despite running tests the doctors had no idea, so it didn't help me qualify. Debilitating on top of the fatigue, of course, but it's been around for many years. The closest thing I've found to match it is "acephalgic migraine". Sorry, I'm complicated. I wound up getting two PT retail jobs (my husband was retired) and cleaning vacant rentals. I would have days I couldn't work and days when I would get going and be glad but the next day I'd feel like a truck ran over me. Managers didn't understand why I, with CFS along with a list of dxs, had such problems. Difficult, lazy, lack of consideration for coworkers, all sorts of labels and none of them true. By 2013 my husband started to decline mentally (Alzheimer's) and by 2016 I had to retire to care for him 24/7. That, too, was exhausting. And it didn't matter if I had the energy or was ill. I had to muddle through. My husband passed 3 years ago. I'm still tired almost all the time. I have to choose *one* physical activity a day. Grocery shopping? Laundry? Vacuuming? Mopping? Changing bed linens? Washing my hair? One is enough. Two will make me useless the next day. Exercise intolerance. Yes. I never feel rested. Never sleep more than a few hours at a time. I need to stop. One thing I will say is that one of my sisters who is 62y11m has some dxs the same as mine but she has fibromyalgia. She did get disability and wound up caring for our mother who passed in 2018 s/p 3 CVAs. She's tired and in pain most of the time. We commiserate a lot.

Q: Do you ever have patients with CFS/SEID who say they have axillary pain, as if the lymph nodes were swollen? I get that sometimes. THANK YOU for the video and take care.

[bizzyfit]

No diagnosis for me, but I do experience intermittent fatigue, PEM, and intermittent orthostatic intolerance. The PEM and fatigue began after having EBV. I feel like I've had intermittent orthostatic intolerance almost all of my life though. I am able to work full time, and I am grateful. I can do light pilates for 5-10 minutes a couple of times a week. I wish I could do more. I find not being able to exercise very frustrating. I find that fatigue seems to worsen at my most hormonally intense times (before ovulation & period). I am a 46 year old black woman. It does my heart good to see a black woman speaking on this topic. I did not know there was diagnostic criteria. I hadn't even sought a diagnosis, because I have read that getting a diagnosis can take years IF you have a practitioner that doesn't write you off as depressed or making it up and actually does believe CFS is real.

[Etubnuel]

It's interesting that you mention orthostatic intolerance. I recently had a patient who passed away due to severe pressure ulcers/bed sores as a result of that patient having stayed in bed, almost completely still for several months due to severe M.E. symptoms.

The patient had initially been met with skepticism from healthcare professionals and had before the M.E. diagnosis been diagnosed with several psychiatric disorders, and that might have played a part. This patient was not catatonic though, only suffering very much from M.E. and what you just described as orthostatic intolerance, among other M.E. symptoms. Horrible syndrome, this was not an old person but around 40-45 years old.... hopefully we'll learn and get better treatments soon.

[Kellyl_av]

Hi thank you for sharing. I'm from the UK and was diagnosed with Chronic Fatigue Syndrome in January

[mordeys]

For the past 7 years. What helps me the most is my family recognizing my illness. They cover my butt. They let me do what i can but are right there to do the things i can't or to do the portions of an activity that will tire me the most. They never give me the look or attitude when I'm just not able to finish or start an activity. They understand its nothing i can control. When that stress gone it makes me actually feel better and do more.

[chihuahuapixieprincess]

I've had this for 28 years after catching mono: I wish you were my doctor - when I told my Dr I felt far better lying down I was told it was anxiety.

[annieangello]

Why can't it be a lifelong thing? I've had those symptoms since I can remember myself. I've given up on doctors finding out what's wrong with me, because my bloodwork results are always normal, so they say I'm fine, but I'm not fine like a normal young person is supposed to be fine. I hope some day soon there will be a blood test that can help with getting a diagnose.

[misslashondacade]

I've struggled with this for 31 years . (My whole life)

[twangel]

I had M.E very severely in my thirties, a write off. Gradually it seemed to go. But since a hip op i have spent four years mostly in bed due ti weakness ans pain. Ans anything I do like visitimg family or shopping exhausts me, have I chronic fatigue now.

[reneepagano]

I was diagnosed recently. A lot do not believe in it 😢

[SweetGypsyMamma]

Thank you! Are there tests specifically for orthostatic intolerance & MCAS?

[alib]

I was wondering if this was real. Always wanted to know more about it.

[christundube]

Hello Dr Jen, what kind of medicine to treat chronic fatigue syndrome. Is this condition cureable Dr Jen.

[donhudson]

Dr. Caudle, Would a diagnosis of chronic fatigue entitle a social security recipient to receive additional financial benefits as being disabled?

[tomikacox]

I deal with this every single day and it’s very debilitating and I’m wondering if a whole body herbal detox will help.

[ryanneilcarr]

Not Myalgic Encephalomyelitis thats for certain