Friend with Chronic Fatigue

[gromit]

YO anybody have any experience with this?

One of my good friends from school has been diagnosed with chronic fatigue. I think it's especially hard on her because she was formerly very active, a distance runner and competitive athlete. Now she can barely function with day to day demands.

If I lived nearby I would do stuff to help make her life easier... grocery shopping, cleaning, whatever. But she is way on the other side of the country

I can can tell she is bummed out about the diagnosis and I wish there were something I can do! She asked me to send her some artwork over the summer and I mailed some little paintings. And I made her a calendar for 2017 of some of the best nature photos I've taken.

I guess my hands are kinda tied though due to distance. Anyone got any insight?

 

[nonsequitur]

I'll take the scientific side first, then the emotional side.

Chronic fatigue is linked to dysregulation of the gut microbiome (leading to gut inflammation). That's also why it's often co-morbid with IBDs. I'm not sure if your friend also has IBDs, but the first step in helping to alleviate that would be to go on a low FODMAP diet.

Monash uni has a good resource (including an app) for people who are unfamiliar with it: Low FODMAP diet for Irritable Bowel Syndrome

(No, I don't work at/for Monash and declare no competing interests )

Typically inflammation spreads through the gut/brain axis, leading to other symptoms such as depression, anxiety etc. I'd suggest to emotionally provide support by checking in with her, but it's crucial to get the inflammation to calm down - it's very much a physical phenomenon. I'm not sure if her gut can tolerate it yet, but typically, the best way to do that is to keep to a high fiber, low FODMAP diet for a while. Since she used to be a competitive distance athlete, adrenal fatigue might be another factor, so it's important to be aware of the possibility.

As inflammation in the gut spreads to the mind, it also works in the other direction. There's quite a bit of evidence that chronic stress can also trigger CFS. If she's up to it physically, you might want to suggest very easy, very relaxing yoga/stretching to her - or to do meditation exercises together, laugh about things together, etc. CFS also flares up and calms down (like any other immune condition) so it's important to figure out and avoid potential triggers for an attack - it may be possible to reduce long-term disruption to her life.

Just some things off the top of my head.

[standard disclaimer that I'm not a medical professional; I just have an interest in this stuff]

 

[Beargryllz]

One of the interesting things about CFS is just how many etiologies have been proposed. Usually, you'll see one dominant theory and maybe a few alternatives. The alternatives are often either antiquated or pretty new, without much data to really support them.

This is not the case here. Here, we've got a lot more etiologies proposed and none of them have any substantial evidence. We've got epstein-barr virus, all other viruses, an autoimmune-mediated response *to* a virus, an autoimmune response *without* a viral etiology, plain old depression, endocrine dysfunction, neurally-mediated hypotension, sleep hygiene, and a genetic component.

None of these really beat out any of the others. Something like 60-70% of CFS patients meet the criteria for anxiety and/or depression. This isn't really all that useful because ~everyone with a chronic illness is depressed until proven otherwise.

My instinct is to rule out hypothyroidism, then do a trial with prozac. All the normal rules like good night's sleep, daily exercise, diet, etc. all apply

 

[nonsequitur]

Well, it's not so long ago (around a decade) when most doctors thought that CFS was malingering.

What's indisputable is that there is definitely an immune component that provides a link between the physical and mood symptoms. It's certainly difficult to isolate a trigger since none of the above etiologies exist in a vacuum. It's also very possible that it requires the interaction of several factors including viral infection. However, there's quite a bit of evidence that shows reduced diversity of the gut microbiome/virome in patients with CFS in combination with increase in gut/plasma inflammation markers. The same trend also been shown recently in identical twins with/without CFS. A low FODMAPs diet is also regularly used to reduce gut inflammation.

The goal here isn't really to diagnose and treat, but more to provide support and suggestions for things that she can do from afar? I really don't think telling her friend to go on prozac is a good idea (and is probably against forum rules). Especially since all we know is what we hear 2nd hand.

 

[Forever]

Hey, I know I don't have much to say but I feel for your friend and express my sorrow, I used to be a very ambitious long distance runner too.

 

[magpie]

CFS has been linked to dysautonomia as well. If I didn't have diagnoses that explain the root cause of my problems as genetic, I'd probably be diagnosed with CFS because I fit basically all the symptoms. CFS is sort of just a placeholder diagnosis when no one knows what's wrong with you. I'd be pissed if someone diagnosed me with it and then was just like, "well, okay, now we don't have to keep looking into things."

This isn't really advice, sorry, it's just a continuation of the what is CFS conversation.

In terms of advice though, I think you're doing a good job as a friend so far. I think just offering to listen to her if she needs to vent would be really nice as well.

 

[gromit]

Thanks guys! Yeah it doesn't seem like she's really interested in suggestions as to what is causing it. She already has been working with her MD to rule out anything systemic/ hormonal (eg adrenal). As for the depression, if anything, I think not being able to do the things she loves and which give her life meaning may be giving her some of those symptoms.

Once I get a few more paychecks under my belt maybe I'll see how she would feel if I fly out to visit her!

 

[Tellenbach]

I read "Cure: A Journey Into the Science of Mind Over Body" about a month ago. There's an interesting theory in the book that CFS might be caused by the brain's faulty setting of a limiter (in the form of fatigue) in response to a viral or bacterial infection. The theorist thinks that fatigue is used by the brain to prevent one from overexerting the body to the point of damaging it. In the case of CFS, the fatigue limiter is set but isn't reset when the infection is cleared. To reset the limiter, the author cites one case where a lady with CFS slowly (over a period of months) increases the level of physical activity. By increasing the level of activity, the brain resets the limiter bit by bit so that eventually, the level of fatigue is back to normal levels.

So basically, start walking 10 steps day 1, 12 steps day 2, 14 steps day 3, etc until your energy levels are back to normal.

 

[nonsequitur]

For those claiming that "daily exercise" helps CFS: How bad science misled chronic fatigue syndrome patients

On the same subject, this time reported by undark - this could be unpacked further with problems with the medical establishment: For Chronic Fatigue Syndrome Sufferers, a Dubious Treatment Unravels

 

[Tellenbach]

How Does Mitochondrial Dysfunction Affect CFS Patients?

A study in Great Britain demonstrated that 70% of Chronic Fatigue Syndrome (CFS) patients have ultra structurally abnormal mitochondria. When the mitochondria are not working properly, the cells and tissues of the body are starved for energy. This will make the body rely on anaerobic metabolism, resulting in fatigue, muscle pain, poor concentration, gastrointestinal dysfunction, headaches, and poor recovery from exercise.

This would've been my first guess. The solution would be to fix this dysfunction; I'm not sure how this could be accomplished. You can replace the blood with donor blood but mitochondria exist in every cell. How to fix the problem in muscle and brain tissue would be the challenge.

 

[nonsequitur]

^ mitochondrial changes are seen in cells that are under stress. It's not causative.

 

[Mal12345]

Eating high carb foods will lead to sleepiness. But for me it's gotten to the point where the energy drains out of me and I can hardly move. Any carbs will cause it, even the fructose in an apple.

 

[Mal12345]

I agree that CFS is a placeholder diagnosis for "something." But don't look at the mental aspect first. Any good doctor will advise you to rule out physical causes first. For me and the guy who sits behind me at work, it's definitely related to eating. He's got it possibly worse than I do. He says it strikes him right after lunch break. During that time, if I turn around to see what he's doing, he'll be slumped over in his chair with his eyes closed. He'll complain that he's just very tired, and also hot. He has a fan on his desk that he turns on in order to get through the heat spells he goes through. If I eat carbs just before going to bed, it feels like I'm cooking under the covers. My skin feels like it's radiating heat like the outside of an oven. We're both slightly overweight. It's like my body metabolism has slowed way down, and in order to process the carbs into energy my metabolism starts "burning" them like crazy, making me feel tired due to the physical process of burning off the extra energy.

 

[Mal12345]

By the way, I haven't been diagnosed with Chronic Fatigue. I'm just supporting the dietary aspect behind something like it.

 

[Litsnob]

I have it. CFS/ME and I prefer the ME title because chronic fatigue is a descriptor and lists one symptom. I have had it for decades and was diagnosed finally about 16 years ago. It's very difficult for me to explain this illness and I do better answering questions. Otherwise I'd end up writing a whole book. Every person will experience it somewhat differently but there are common symptoms that go beyond just profound fatigue. It changes your life. It takes things away from you that you loved. Sometimes your family and friends can't handle it and often they don't believe you have any real illness. It can be depressing to live like this. For many people it can be difficult to ask for help. If you are not living near your friend the best you can do is be a good listener, be sympathetic and believe her. One of the worst things about living with this illness is that so many of us have not been believed. There are still a faction of people including health professionals who insist it's psychological. If you wish to ask me any specific questions I would be more than happy to answer. One of the hardest parts is adjusting your life and your sense of identity. This is no longer a new thing for me but it will be for your friend. She is lucky to know someone as caring as you.

 

[Litsnob]

I agree that CFS is a placeholder diagnosis for "something." But don't look at the mental aspect first. Any good doctor will advise you to rule out physical causes first. For me and the guy who sits behind me at work, it's definitely related to eating. He's got it possibly worse than I do. He says it strikes him right after lunch break. During that time, if I turn around to see what he's doing, he'll be slumped over in his chair with his eyes closed. He'll complain that he's just very tired, and also hot. He has a fan on his desk that he turns on in order to get through the heat spells he goes through. If I eat carbs just before going to bed, it feels like I'm cooking under the covers. My skin feels like it's radiating heat like the outside of an oven. We're both slightly overweight. It's like my body metabolism has slowed way down, and in order to process the carbs into energy my metabolism starts "burning" them like crazy, making me feel tired due to the physical process of burning off the extra energy.

CFS is a placeholder name but ME, Myalgic Encphalomyelitis is not and neither is whatever that strange new name they came up with recently-SEID. Naming it does seem to be difficult. Part of a proper diagnosis is ruling out anything else that it could be but there is also always the possibility that a person has more than one condition. I have CFS/ME but I am also celiac. I also just don't do well with grains in general. I have lots of allergies and hormonal issues too. These things probably connect in some ways, exacerbated by each other or all part of a struggling immune system.

 

[ColonelGadaafi]

Here, watch this. This will explain everything:

there is something wrong with the central-nervous system. CFS usually have a shot at recovery. But it's unliklier the older you get.

 

[Zoom]

On a purely practical level: be prepared to be laid back about plans & to put more effort into the relationship as the illness progresses (if it does). I have a close family member who has had CFS for a few years, and it can be deeply saddening to watch them deteriorate - and frustrating to make plans only to have them canceled 90% of the time. Reaching a point of complete acceptance that it is not simply a matter of effort but how they feel on that particular day can be extremely helpful. Just mentioning it in case you do make the aforementioned visit.

With regards to the effort on your part that I brought up, CFS can sap one's emotional & mental energies as well, so make it a point to call them at regular intervals to keep in touch... and to not take it negatively if they are not the one to initiate contact nearly as often as you.

Also, for the love of god don't make suggestions that they exercise, go out, or do _______ unless they've mentioned that it helps them feel better. I've noticed that someone with CFS often seems to feel as if they're just being lazy, and making them feel bad about having subzero levels of energy tends to make them more depressed. If you do want to poke them with a stick, mention something stationary but productive - knitting, reading, etc. For someone who is active this is an extremely difficult but necessary adjustment to make, even as they are trying to recover entirely from this illness.

Just a thought.