← Return to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments

Comment receiving replies

Hi @webdog, thanks for starting this discussion on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). I'd like to bring @jlfisher56 @kellye5 and @plshelpmyfatigue into this discussion. You may also be interested in members talking here:

- Constant Fatigue, 20 year old female https://connect.mayoclinic.org/discussion/constant-fatigue-20-year-old-female/

Fellow member and mentor, @johnbishop has posted this TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis. Have you seen it?
What happens when you have a disease doctors can’t diagnose https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

What symptoms does Valtrex + low-dose naltrexone help for you?

Jump to this post

Replies to "Hi @webdog, thanks for starting this discussion on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). I'd like to..."

Thank you for including me. I will watch the TED this week. It is frustrating and depressing...I just sent my boss a picture of how I look tonight as proof of why I will be in later...I should not have to do that but with the CF and pain comes swollen eyes and a blistered face. Not what school children want to experience in their principal or that I can physically manage. So I have started documenting with photos as I improve and as I worsen...each time for my docs.

Yes thanks Colleen, I did see Jennifer Brea's TED talk and her movie Unrest. I can agree that ME/CFS is difficult to diagnose, as it took over 3 decades and dozens of doctors for me to get a diagnosis. According to the CDC, only 10% with ME/CFS are diagnosed.

Valtrex helps with the recurrent herpes outbreaks I used get on my lips and inside my nose. These outbreaks would be accompanied by various cognitive issues and flu-like symptoms. The low-dose naltrexone helps with sleep and also lessens the recurrent flu-like symptoms.

In theory, both treatments are also supposed to improve very low NK cell function. But I don't currently have a doctor that will retest for this.

Unlike Jennifer Brea, I don't have any body pain (just headaches), which is not uncommon for ME/CFS.

Sure, I have fatigue, but fatigue isn't really the biggest problem.

It's the cognitive dysfunction and muscle weakness, generally 12-36 hours after even mild exertion, that is most disabling to me (post-exertional malaise). Also, orthostatic intolerance makes it difficult to be upright for very long.

Hi, @webdog -- I wanted to add my welcome to Mayo Clinic Connect. Like @colleenyoung, I think it's great you are starting this important discussion on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and its treatment.

@kellye5, thanks for joining this chat. That is a smart idea to send photos to your workplace so your boss can envision what you are experiencing. How have they been received?

@webdog, you mentioned orthostatic intolerance — challenges tolerating standing up with symptoms that get better when you lie down — makes it difficult to be upright for very long. Have you adapted your space to do activities lying down, like correspondence online and staying connected?

@lisalucier I'm almost completely housebound, so adapting my space isn't really an issue. I do spend a lot of time on the couch or reclining in bed. My computer chair is set to recline as far back as possible, and I keep my legs propped up to help with the orthostatic intolerance.

If I need to walk outside, I usually wear compression stockings, which help reduce symptoms of orthostatic intolerance for a bit. But they don't reduce post-exertional malaise.

Like most with ME/CFS, I can't work. I think 75% are unable to work. I don't think most people are aware how functionally disabling ME/CFS is. Or that it has much lower quality of life scores than even most "serious" diseases.

A few times in my life, I have been able to work a bit. In my previous part-time job, I'd sneak off to lie down when I could, which was never enough. I wasn't diagnosed, so I couldn't ask for accommodation or set up my workspace appropriately.

Not having a diagnosis for most of my life made living with my illness more difficult than it needed to be. It wasn't a lack of doctors: I saw dozens including many specialists. It's simply that very few doctors know how to correctly diagnose ME/CFS.

I have CFS and have had for 20 plus years. I had mono, then Epstein Barr virus then tried to go back to work, couldn't had to quit and went into a research program for about a year. Very good because I got testing free but after awhile my mom pulled me to get meds not placebo, etc.. It took about 2 years and I improved. I was able to go back to work. I was always tired and had to watch my warning signs. Then I got diagnosed with MALS had a major surgery and out it came with full force. But it was even more than just fatigue. After four years and 2 other surgeries for Mals, I found out I have Mast Cell Activation Syndrome. It may be worth looking into. The swollen eyes and blistered face is what made me think this. An allergist/immunologist diagnosed me. He is well known for this. It is very new to medical field and not many know about it, but there is so much research out there. Just google it and see if that may sound like you. Hope that helps.

Jennifer Brea is amazing!