Ask HN: What has been your experience with chronic fatigue syndrome?

35 points | by jstx1 10 days ago

19 comments

  • mikelevins 9 days ago
    I was diagnosed with Chronic Fatigue Syndrome in the fall of 2006. Its impact on my life was fairly catastrophic, but everything is much better now.

    I still have CFS, but mostly I don't notice it, so long as I obey some rules it took me around a decade to learn.

    A longer and more detailed account of it all follows.

    The trouble began in the fall of 2004. At that time I was prosperous and had a generally good life, but it was stressful and hectic, and had been for about a decade.

    I worked long hours for a successful startup. I had two teenage children. I owned a business on the side teaching people Chinese martial arts and serving as a Bay Area contact for a well-known Chinese martial arts teacher.

    I was a busy guy, and had been for a decade. I was prospering, but I was very tired and stressed.

    In the fall I developed what I thought was a cold or the flu. Week after week went by and it only kept getting worse. By Christmas I was sleeping eighteen hours a day or more.

    My doctor had no idea what it was. She scheduled every test she could think of. I was tested for things that were extraordinarily unlikely (tuberculosis, AIDS, et. al.) given my circumstances, just because the Doc ran out of ideas.

    We did allergy panels. The results were preposterous. The exact words of the person who called me with the results were that I was "violently allergic to everything."

    The startup hung on for over six months, paying my full salary in return for no work. In the end, though, they had to pull the plug. I have no hard feelings. They were good to me.

    It took two years and several doctors before one of them listened to my whole story and said, "Hunh. Sounds like a textbook case of Chronic Fatigue Syndrome."

    I went home and looked it up and, sure enough, Wikipedia's description of a typical case could have been exactly the sstory I told my doctor. Both I and my doctor wondered why no previous doctor had proposed that diagnosis before.

    (Later, though, I heard from a friend of a friend who was an RN, and who had some relevant experience. She said that physicians were generally reluctant to diagnose CFS because it was a controversial diagnosis and it was hard to get insurance companies to cover anything for it. That was circa 2006; perhaps the situation is better now; I don't know.)

    The new doctor proposed some short-term things to try to get me to a point where I could stay awake and alert more than a few hours a day, and some longer-term things to try to reach some sort of stable accommodation. Things got better right away. He didn't cure me, but he helped me reach a point where I could work again.

    Over the ensuing sixteen years the same doctor and I have rebuilt my life. We started with steroids and CNS stimulants, which helped me re-establish a baseline level of wakefulness for some kind of a workday.

    For the couple years that I was sleeping all day every day, my general condition deteriorated rapidly, and my diet suffered considerably--partly because I just ate anything I could get my hands on that didn't require me to be awake or upright.

    So I started working on my diet. I also began to exercise again--carefully. I had been an exercise nut, often working out at the martial arts school for twenty hours a week or more, on top of fairly grueling work schedules. That all went out the window when I got sick. Now I started to try to build it back.

    It was a two-steps-forward-one-step back kind of thing. CFS screws with your metabolism. You can't recover normally from fatigue (which is where the name comes from). I had to gradually learn how to tell when I was exercising appropriately, versus when I was exceeding a boundary that was going to put me flat on my back with intense vertigo for several days.

    We tried several drugs to combat the intense sleepiness. Modafinil and armodafinil did the trick for me. They enabled me to stay awake for a stable fraction of the day. I got my sleep cycle under control after about ten years of struggling with non-24 sleep/wake syndrome. I experimented with various approaches to exercise. Plain old walking ended up doing the trick. It worked much better after I got a standard poodle who would bug me to go for long walks several times a day.

    Slowly, slowly, I got my weight back to normal, my body fat back where it belongs, my general condition into good shape, my nutrition healthy, and most of my blood tests good.

    Annoyingly, I developed type II diabetes during the worst nadir of my physical condition, but in the course of learning to manage everything else, I got that well under control as well.

    My life is very good now, and it has been for a number of years. I still have diabetes and CFS, but if I obey the rules of behavior that I have painstakingly discovered over the years, I don't really notice either one much. Well, I do seem to need at least one short nap most days, but that could be because I'm in my early sixties now.

    Whatever.

    CFS didn't kill me. It briefly made me think I was dying, and then briefly made me want to die. It was a decade-long struggle learning to adapt to it, but I did.

    That RN I mentioned offered the advice that you won't die from CFS, but you'll die with it. My eventual response was to accept that it was now a permanent part of my life, and then to work on finding out what kind of life it could be. I did that, too. In most ways, my life is now better than it ever was.

    I hope you can do much the same thing.

    • myoldohiohome 10 days ago
      In 1966, at age 18 I came home from the first year of college very tired. No amount of sleep made me feel rested. Everyone, including me, thought I had mononucleosis. I tested negative for mono and my family doctor said I had a virus that imitated mono, get some rest and it should go away.

      In 1980 when CFS hit the news as "yuppie flu", the initial description was 'a virus that imitated mono.' My family doctor got it right 14 years earlier.

      It is difficult to be diagnosed with CFS because you have to eliminate every other cause of tiredness first -- MS, cancer, etc. One doctor told me that tiredness was a symptom of every disease in the book. I never had unlimited funds at my disposal, so I never pursued eliminating all other causes. Eventually I concluded that if it had been serious I'd have died already. My last doctor finally put on my chart 'he is chronically tired and we don't know why" or words to that effect.

      As for my experience with it, it has been lousy. Why wouldn't you be depressed if you can't go where you want (or your spouse wants), can't work full time, live poorly as a result, etc. Eventually you learn to live within your limitations and don't push yourself too hard - because you will pay for it later.

      My advice is kind of glib: don't let it get you down. I have a belief system that has helped me tremendously in dealing with it and a spouse that has reconciled herself to not going out to eat very often (never, since the pandemic), not socializing greatly (she is introverted anyway), and not taking long vacations - this she misses. Find yourself both - a belief system that supports you (I don't want to take the discussion in that direction) and family and associates that understand.

      And they haven't found a cure. When they find a real one, you will hear about it. So don't waste your time and money on snake oil. If it works for you, do it. Less coffee and sweets works for me, at least it helps matters.

      And thanks for asking. I'm not a coder by any means so I usually just lurk here. But I've wanted to put this in words for a while.

      • geoduck14 9 days ago
        Thank you for sharing. I was addicted to work and pushed myself too hard. I have since learned to regulate my work level.

        This, by no means, is comparable to CFS, but I do appreciate hearing about how others react to stress and the overall impacts tiredness have on one's life.

      • LinuxBender 10 days ago
        Many years ago I had all the symptoms of CFS but specifically in my case it turned out to be insulin resistance from eating a Standard American Diet for too long. Anecdotally I was able to eliminate all the symptoms of CFS by changing my environmental inputs but that was just my specific case and may not be helpful to you at all. I had to figure this out on my own but I should give some credit to all the research papers on nih.gov and a handful of nutritionists and scientists that gave talks on nutrition.
        • the_only_law 9 days ago
          > Many years ago I had all the symptoms of CFS but specifically in my case it turned out to be insulin resistance from eating a Standard American Diet for too long.

          I should probably check this out. I’m skinny as shit but eat enough sugar to probably slump me over soon.

        • worker_person 9 days ago
          Took me 20 years to figure out I had an autoimmune condition. Chronic fatigue and brain fog were the biggest symptoms.

          LDN: low dose naltrexone has been a life changer so far. Even seems to help a little with ADHD. So far only side effect has been intense dreams. But that is fading. I was also finally able to get off pain meds thanks to it.

          Plaquenil worked well for a few months but side effects were too much.

          Tried Adderal and all its variations as I also have severe ADHD. energy wise, they were great. But they inflame all my nerves. Not worth it.

          Diamox also helps with my energy level oddly enough. Two hours of being sleepy, 10 hours of improved energy.

          AIP diet has been a big help. Closer I stick to it, the better I do.

          • sysadm1n 10 days ago
            > Did any treatments work?

            Not sure I even had CFS, but I addressed my fatigue with vitamin-B complex and magnesium[0]. I also found MCT oil, avocados, and grass-fed based butter (typically mixed with eggs) to be invaluable. I never looked back

            [0] https://www.amazon.com/Magnesium-Miracle-Revised-Updated/dp/...

            • sschueller 10 days ago
              CFS to seems like a catch all when docs don't know what else to do.

              Since gut and diet can have a huge effect on fatigue and docs usually don't ask about what you eat I would rule that out first. You can do this yourself by changing what you eat or limiting to certain foods for a few days and see what happens. In fact I would try to see if you feel better if you fast for just one day and drink only water, no sugar drinks.

              • MrJohz 10 days ago
                The people I known who have it _really_ have it. Not just "sometimes I feel tired", but "I need a wheelchair to get out of the house, and if I sit in the same room as someone with a cold, I'll be knocked out for a week". Seeing a housemate go from cycling to work most days to lying on a sofa unable to get up in the space of a few days, it's pretty clear to me that there's something going on that's not just fixable with a bit more sleep and a change in diet.

                I've heard different people give different suggestions for ways to improve things. One friend uses a mobility scooter, not so much because they particularly need it to get around, but more because if they waste their energy walking, they can't use it doing what they actually want to do. Another friend has an oxygen mask that she reckons has really helped her with some of the pain she's been feeling as part of her CFS.

                • nradov 10 days ago
                  If an oxygen mask actually helps physiologically (not just placebo effect) then that's a symptom of a serious respiratory or cardiovascular system disorder rather than what we would usually define as CFS. Even if someone is extremely fatigued, as long as their respiratory system is working correctly then blood oxygen saturation will be near 100% and an oxygen mask will have no effect. In fact prolonged use can actually cause lung damage due to oxygen toxicity.
                  • MrJohz 10 days ago
                    Tbh, I'm not 100% certain it was an oxygen mask, but it was something that in my head fits a similar category. And yeah, you're right, she may have benefited mainly from the placebo effect more than anything else.
                • Llamamoe 9 days ago
                  Not ME/CFS, but really severe sleep apnea due to nasal congestion and recessed jaws.

                  I wasn't able to complete high school, spent ten years unable to leave my house, progressively degenerating into an early dementia like state. Couldn't even fully understand what people are saying to me.

                  Was largely disregarded and gaslit by doctors, family, people for being lazy and having a pathological lifestyle.

                  Took online friends buying me a CPAP to get any relief, but it's insufficient and I continue to be heavily disabled and unable to function enough to move forward and there is nobody out there who would help.

                  Increasingly contemplating ending it all. Just so tired of existing.

                  • tucaz 9 days ago
                    Isn’t there a surgery you can do for the sleep apnea?
                    • Llamamoe 8 days ago
                      Yes, Maxillomandibular Advancement, a subtype of Double Jaw Surgery.

                      It's more effective than any other treatment, I'm just struggling with functioning my way through the hoops necessary to prepare for and go through with it.

                  • rednerrus 9 days ago
                    My experience has been a handful of things have helped solve my lack of energy/motivation.

                    I got a sleep study and it turns out I have sleep apnea. I got a CPAP and it's been very helpful. It took about a month for the results to really kick in.

                    I've also cut the level of carbohydrates from my diet and increased my water consumption. That's been really helpful.

                    I've also started 20 minutes of meditation before bedtime.

                    Energy levels aren't what they used to be but they're picking up.

                    • Mildlypolite 9 days ago
                      I've got a diagnosis of cfs for many years.

                      In the end it turned to be lyme disease and pots (disautonomia)

                      I've got a long cycle of antibiotics for lyme disease and they helped me a lot.

                      But pots remained, I am still taking drugs for it. I'll have it all my life. But I've found I can manage it through exercise.

                      Before antibiotics I was so tired that any amount of exercise would bed ridden me for weeks. I was very ill.

                      • xyzzy4747 10 days ago
                        It miraculously fixed itself (or became unnoticeable) after I started working at home during COVID, quit my corporate job, and created a startup.

                        For example before then I noticed I only had fatigue when working and not when playing video games or enjoying my idle time.

                        • elisom78 9 days ago
                          Chronic fatigue syndrome is a rather serious disease (https://ivypanda.com/essays/chronic-fatigue-syndrome-and-thy...). The condition does not improve even after a good rest. This disease is especially characteristic for residents of populated megacities. The main thing to do is to streamline the ratio of work and rest, rational physical activity and, of course, the normalization of the diet. It may be worth talking to your doctor about taking vitamins.
                          • rohfle 9 days ago
                            I've been diagnosed by a GP, but I didn't find that diagnosis led to specific treatment. Most conventional doctors treat it as depression if other tests come back normal. I've tried heaps of other health practitioners over the past 15 years and its been hit and miss. I had a lot of family support from the start.

                            B-Complex in the morning and Magnesium in the evening, along with Enzo Pine Bark for cognitive issues made a huge difference for me for the past 3-4 years. I've recently been focusing more on digestion, the gut, microbiome etc. Changing diet, dropping gluten and dairy made a huge difference. I had markers showing celiac disease. Most of the changes have been trial and error, noticing the patterns as I went.

                            I've been seeing a psychologist since my last burnout too. I recognize I feel I have to overcompensate for the tiredness and looking weak from CFS by taking on risk and pushing myself into burnout. The stakes of trauma and conflict are higher for me. I always felt like I was alone with CFS, like no-one understands and that was incredibly isolating. And there is a feeling of being in a car crash in slow motion keeps me in a constant state of chronic stress. Some of my experiences could be seen as being locked in the "freeze" state, with efforts to move out of that state producing panic and anxiety. To me I believe this is all a minor (but still important) part of the complex picture though, and related to the consequences of my experiences both socially and personally with my condition.

                            Life events have been super hard because I'm already primed with stress so sometimes the hits hit harder and recovery takes longer. A supportive partner and family definitely has helped.

                            I tried exercise and yoga, I would get yoga lows and exercise did not make me feel better personally. For a long time, I wouldn't get burn when exercising, instead I would feel weaker like I was wasting away. And then one day I was trying some new changes and I felt I could handle going to the gym - I got positive gains out of it.

                            I see my CFS as a complex array of vague dependencies, interrelations and consequences. An analogy is getting someone out of poverty, it may be a lot more complex than just giving someone money to give them a hand out, theres usually a lot of reasons (and assumptions on my part), and its usually easier to denigrate, not care and ignore them. Every way I look at it I see a different viewpoint. It has been a journey of poking in all directions trying to find a way in, and an emergence of a personal truth and understanding.

                            I want to emphasize its not all straightforward - I've given up many times along the way.

                            • tiahura 10 days ago
                              My experience is that, when under oath in a deposition, doctors tend to be very noncommittal on the diagnosis.
                              • nradov 10 days ago
                                Well of course. CFS isn't really a specific diagnosis as such. It's just a cluster of symptoms usually without a definitive root cause or reliable diagnostic test. A doctor might record a CFS diagnosis as a step in writing a care plan and to facilitate billing, but then they might be more circumspect when testifying under oath where the consequences of a misstatement are more severe.
                                • chownie 10 days ago
                                  Is this your personal experience?
                                • ZeroGravitas 10 days ago
                                  Some of these comments reminded me of ADHD, and a quick Google suggests there is at least a theory that they may be linked or associated in some way.
                                  • Check for testosterone, thyroid, vitamin, iron. Do you get 8 hrs of sleep, drink enough water, eat less sugar?
                                    • simonblack 9 days ago
                                      Zinc supplements have been shown to be effective in reducing the effects.
                                      • adsteel_ 9 days ago
                                        There are a lot of low information comments in this thread. Let me try to inject some more information.

                                        Chronic Fatigue Syndrome is not "chronic fatigue". In that sense it is a misleading name. It cannot be eased by sleep. Rest is necessary to prevent further degradation, but no amount makes a patient healthy.

                                        The dominant, maybe key symptom, is unusual exhaustion, weakness, body pain, and/or cognitive decline after any exertion; exhaustion that is not easily recovered from. This symptom is called "Post Exertional Malaise" or just PEM. "Exertion" in the context of CFS could mean walking to the mailbox, doing the dishes, reading a book, or even watching TV. Sometimes patients call it "payback". Pushing too hard can cause a worsening of the condition for months or years.

                                        CFS is also called Myalgic Encephalomyelitis, in the UK at least. Some people claim these are separate conditions, but it is now generally accepted that they are not. Some people call it ME/CFS. It is a condition with a name problem, for sure.

                                        To get diagnosed with CFS is a long process. Despite attempts to improve this, it is still a diagnosis of exclusion, as there is no known biomarker. That means first, you have to get tested for all things that are even kind of testable that might present your symptoms. At a minimum: white blood cell count, vitamin levels, thyroid functionality, HIV, MS, lupus. If you're lucky, you'll get diagnosed and treated through this process.

                                        Once you know you don't have one of these conditions, you must then meet a strict set of criteria. The best criteria these days is the [Canadian Consensus Criteria](https://me-pedia.org/wiki/Canadian_Consensus_Criteria). It is likely that you can have one of the above conditions AND CFS, but that is difficult to sort out with our current process.

                                        This means that CFS patients as a group may have multiple underlying conditions. In the past few years, some high profile patients have been successfully treated for a neurological condition similar to Chiari Malformation I, via cervical fusion. It is an expensive treatment, with high risk, and no solid research behind it. Many other CFS patients have received it without improvement. The search continues.

                                        The medical community has frequently found itself at odds with CFS patients, who regularly report outcomes contrary to some medical expectations. There is a famous study called the PACE trial, which encouraged CFS patients to use "GET", or Graded Exercise Therapy, and CBT. The underlying idea is that patients have become scared of exercise and must be gradually coaxed back. This study has been heavily criticized for its unscientific methodology and the damage that GET in particular causes to patients. It seems to be fading from popularity, but many medical professionals continue to stake their professional reputations on it, and insist on treating their CFS patients with only CBT and GET. The NIH in the UK recently dropped GET from their CFS guidelines, to no small amount of drama.

                                        For a patient with CFS, the research backed options are few. With CFS research underfunded for decades, there is little of rigor to guide you. There is a lot of snake oil, and there are a lot of guinea-pig style options that risk worsening your condition. The best patients can hope for is to find a few things that make their new disability easier to bear, and to learn how to pace, meaning how to work within their new exertion limitations.

                                        The state of CFS medical opinion and research has been slowly advancing over the past 10 years, with one bright light being the [Open Medicine Foundation's 'End ME/CFS Project'](https://www.omf.ngo/the-end-mecfs-project/), which is seeing multiple research teams from across the globe, including teams from Harvard and Stanford, working together to solve this problem that affects 100s of thousands, if not millions, globally.

                                        If you want to know more, the OMF and MEPedia sites linked above are great resources to start. The movie [Unrest](https://www.netflix.com/title/80168300?source=35) from 2016 helped turn the public opinion tide and is still worth watching today.

                                        • EheAFC8GA5rbyN 9 days ago
                                          I started to get symptoms in 1999, after I'd been on a year out in Uganda. I'd had all the vaccinations quite close together for some reason, and later on I got Malaria quite badly, and I suspect it was one or both of these which initially caused it.

                                          When I went to the family doctor I was treated for depression, but it didn't fix the tiredness. When I suggested I might have M.E (the UK name for CFS), I was told that M.E. doesn't exist and I'm just neurotic! This made it difficult to for instance claim sickness benefit, and for a while I had to be on unemployment benefit as I "wasn't ill enough".

                                          Several years later when it was more well known, I was diagnosed with M.E., but obviously there is no positive diagnosis, it's just diagnosis through exclusion of other possible causes. The symptoms went away after a few years and I had a full time job and normal life. Then I overdid it a bit at work and eventually came down with a viral illness that just didn't clear up...ever.

                                          In the grand scheme of things I'm quite mildly affected. I get tired easily and would struggle to work a full day, but I have generally been able to work part time to support myself. I managed to do a degree in computing science which obviously helped to get well paid work. I was self-employed for a while which was great as I could work when I felt well. Working from home makes things easier as hours are more flexible and there is no commuting which is energy draining.

                                          I have been quite a lot worse the last year or so because of covid vaccinations. I was in bed for about a month after the first one and still haven't returned to baseline. There is a facebook group full of people with a similar experience and supposedly 10% of people with M.E. are affected long term from the vaccinations. I tried to get an appointment with a specialist to talk about these changes and it's taken 2 years just to get one, which is in a few months time. And this is in the UK, a supposedly developed country. I have found it quite frustrating seeing various people with long-covid getting lots of support instantly, while people with M.E. are left to rot in the gutter even though they are both basically post-viral illnesses and pretty much the same thing. But I'm not bitter!

                                          I have tried antidepressants, therapy, accupuncture, chinese medicine, meditation, "reverse therapy", gluten/dairy free diet, vitamins. I spent a lot of money on some of these and none of it worked, even slightly. Various people such as Dr. Sarah Myhill suggest a keto diet and it's something I might try. There was quite a good podcast recently called "The M.E. Show" and she was on one of the episodes: https://meassociation.podbean.com/e/episode-six-dr-sarah-myh....

                                          • Mildlypolite 9 days ago
                                            My cfs started after atrip too, in my case in a zone known as an hotspot of lyme disease. It took me 10 years to understand that it was lyme and not cfs, the first test I did for lyme was specific for the American species and came back negative, finally the proper test for the 3 European species was done and came back positive.

                                            That was pretty much a nightmare. With relatives and friends accusing me of being lazy whilei couldn't even walk.