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Chronic fatigue syndrome

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  • Chronic fatigue syndrome

    Hi! Just wondering if anyone out there have any advice about CFS. I have had it for several years now. Started being primal after new years. Anyone who has any experience about CFS and being primal? Right now I'm having big trouble sleeping and would love any ideas on how to sleep better.
    It turns out that common sense is not as common as we thought.

  • #2
    I was mis-diagnosed with CFS years ago. (It turned out to be a severe case of gluten and casein intolerance - which may produce the same symptoms of CFS and Fibromyalgia.) Time release Melatonin helps me sleep. Also, Magnesium before bedtime.

    A few years ago, I went low-carb. (Not consistently, though.) Going low-carb really helped with my CFS symptoms. After years of research on general health, CFS, Fibro, gluten etc. I believe that Primal Blueprint is the absolute best choice. I wish you well.


    • #3
      Hi Hilde, I'm really sorry that you're suffering with this. I had it about 10 years ago, though I wasn't primal at the time. I remember the problem with the disordered sleep, the only thing I can suggest is to try really hard not to nap/rest during the day, if possible, and try to maintain a 'normal' daily routine as far as possible. Are you able to get out and get some daylight much? I found small walks helped by tiring out me out physically which helped me sleep normally, as opposed to the CFS feeling of fatigue.


      • #4
        I have a really strict sleep routine. I go to sleep 22.30 every night and get out of bed 06.30. I sleep a lot better when I follow this, but if I sleep even 15 more minutes, I have problem sleeping. which is really annoying, cause I'm always tired. But sometimes, for no reason I can think of, I still sleep horrible. I have just startet to walk slowly for about 10 minutes every morning. Hope it helps and that I can keep it up.
        It turns out that common sense is not as common as we thought.


        • #5
          I'll direct Wifey here when she gets home, she has a lot of experience with this (both CFS and Primal).
          The Primal Journey of Mr and Mrs Fist


          • #6
            I was told that the disruptive sleep was a classical symptom of the illness, and it's probably unavoidable at this point. I remember often feeling that I couldn't sleep properly as I was just too tired, which probably sounds insane to anyone who hasn't had CFS or similar.

            My deepest sympathies, it's an awful thing to have. I think all you can do is really stick with the routine, exercise really gently if you feel it's appropriate, and eat as well as possible.

            Actually, one thing that did help me enormously that I would have completely dismissed beforehand is shiatsu. If you haven't come across it before it's massage of the acupuncture points, essentially a gentler version of acupuncture. I thought it was complete rubbish, had one session only to shut my mother up, and walked out of the appointment with a glowing pink face, when I'd been looking like death warmed up for months. If you have a practitioner nearby, maybe it's worth a go?


            • #7
              Hi Hilde,
              I was diagnosed with CFS in 2007 and can really sympathise with your sleeping problem. A strict routine does help I think, and trying to avoid sleeping at other times (I found this incredibly hard, wouldn't be able to fight the urge to sleep in the middle of the day). Walking during the day is a great idea, I remember only being able to walk to the end of our road and back but was able to slowly increase the distance. I certainly began to sleep better when I began walk several times during the day.

              I found that I would still have poor nights - either waking frequently or seeming to be close to waking and having very vivid dreams which would then leave me tired during the day. Relaxation before bedtime helped me, and ensuring that the bedroom was cool and comfortable. Anything that helps you relax and feel ready to sleep is a bonus and you will hopefully find something that will work well for you.

              It took me over a year to start feeling as if I had enough energy to get by during the day, and even now I have days where I still suffer from crushing tiredness and muscle aches. I wasn't primal when I was first diagnosed, and didn't make that change until 2010. I certainly have much more energy than I had before, although boundless energy still eludes me! I now work full time as a primary teacher, which is demanding on my energy levels in itself, and I think without the primal way of life I would struggle to cope. I find that if I eat too much sugar or anything wheat based I will feel more tired, especially the next day, and will be less likely to get a restful sleep.

              The last thing that really helped me during this time (other than a very supportive Mr F) was adopting a 6 month old dog. I found that I had to get up at a strict time and walk her, and that her exuberance and playfulness rubbed off on me and encouraged me She's been a little angel really, and can still sense when I'm feeling low and will bring me a toy to play with!

              I really hope you begin to feel better soon. It's such a debilitating thing, and it can be hard for other people to understand. I found that somebody I worked with has suffered for years, and having someone there to talk to has helped us both. Best of luck to you x
              Last edited by Mrs Fist; 03-16-2011, 12:01 PM.
              The Primal Journey of Mr and Mrs Fist



              • #8
                CFS was on my list when I found the right dr in 2007, along with hypothyroid and adrenal fatigue. I was a wreck.

                My doc has me do 12 mg melatonin, 4 times the usual amount. I'm not sure if everyone should without talking to the doc first.

                I also do 10,000 IU vitamin D, and some other things. You can find more on my blog under "My Diet and Plan." See sig. I wrote about when to eat on there too, good breakfast, protein snack mid morning, salad for lunch, and just a snack in the evening. In other words, I start out grazing and taper off by the evening. You might want to try that. There is also an article about melatonin on there if you scroll down a bit.

                Primal is the right diet choice, stick with it.

                My hormone doc treats CFS too, and the reading on their site talks a lot about hormone optimization. You might want to consider it. CFS can throw a lot of things off that won't just fix themselves.


                • #9
                  I have Fibro and CMP, with plenty of symptoms of CFS in the past. Magnesium was a big discovery for me, it helps me tremendously - I take it as part of a balanced Calcium / Mag supplement. Taking a vitamin B supplement is a big help, and since coming here increasing my Vitamin D has helped. And, of course, ditching some things that were causing trouble in my diet

                  You can beat this, or at least manage it! I am starting to believe this finally, as I have more and more days I consider good and successful days, and fewer bad days. If I slip up even a small bit though, I am painfully reminded that I am not ok, but I can learn to live and be ok.
                  Fighting fibromyalgia and chronic myofascial pain since 2002.

                  Big Fat Fiasco

                  Our bodies crave real food. We remain hungry as long as we refuse to eat real food, no matter how much junk we stuff into our stomachs. ~J. Stanton


                  • #10
                    Thanks for all replies. I really appreciate it.
                    It turns out that common sense is not as common as we thought.


                    • #11
                      Glad I found this page. I'm trying Primal to see if it helps with my chronic fatigue. Not expecting a total cure, but just getting some of my life back would be wonderful.

                      I went "semi-primal" while travelling over the last week and a half, and it did seem to help a bit. I cut way, way back on all things grain, asked for extra veggies instead of the starchy sides in restaurants, and so on. I noticed my energy levels didn't seem to fluctuate as much. I'm hoping that being more thorough will bring even better results.
                      5'2", 55 years, Primal since April. Pre-Primal weight loss, from 216.6 to 157.8
                      Primal low: 140.2 (Dec. 3) Goal weight: 135?
                      Main Primal goal: beating back my CFS enough to function more normally and start writing again

                      More and more, our life has been governed by specialists, who know too little of what lies outside their province to be able to know enough about what takes place within it.
                      - Lewis Mumford


                      • #12
                        CFS Testimonial:

                        How Eric totally cured his "Chronic Fatigue Syndrome" with an accurate body temp chart.

                        My body temperatures were low for at least 12 years when my CFS reached crisis stage and I started seeing doctors. After a few months of Iodine titration they are now normal!

                        Just wanted to share the good news for those of you debating or wondering whether to push on through startup reactions.

                        I was tracking my temperatures three times a day and graphing them so I have a pretty picture to show:
                        Charting my temperatures – accurately this time

                        Warm regards,
                        I've added this to our Testimonials here:

                        Iodine References:

                        Does anyone else have a Testimonial they would like to share?


                        • #13
                          I found Dr. Myhill to be very illuminating on chronic fatigue syndrome:

                          CFS - The Central Cause: Mitochondrial Failure - DoctorMyhill

                          CFS - The Methylation Cycle - DoctorMyhill


                          • #14
                            Hi Hilde,

                            Don't know if you're still out there, but I hope you're feeling better these days!

                            I wanted to reply to you so you know you're not alone. I was diagnosed with a reactivation of the Epstein Barr virus almost 3 months ago, and I've been out of work since on sick leave. Before this turns into a CFS diagnosis (can only get that once you've been sick for six months, as you know), I am trying desperately to be proactive and to do everything and anything that could potentially make me feel well again. I went from an incredibly active and energetic college professor to someone who most days couldn't get out of bed. Devastating fatigue, sore throat, sleep problems, ear pain, brain fog, sinus pain, and severe dizziness (no driving for me because of the dizziness, I'm pretty much housebound). I'm currently being bounced around different doctors, all of whom so far have said that they can't do a darned thing for me. I made an appointment to go to an acupuncturist/herbalist in a couple of days, so I'll let you know how that goes.

                            Anyway, although I have been eating well and mostly low-carb for the past ten years or so, I wanted to really jump into the Primal way of eating in an effort to see if it would help my current health situation so I could get back to work and back to my normal life. I started it a week ago, and I already feel a difference. Of course, it could be psychological, it could be the supplements I'm taking (I'll send you a list if you want), there are a lot of variables (sorry, I'm a researcher! Ha!), but I know that this week I haven't had any "bad" days and most days I've had the energy to actually leave the house and do an errand. We'll see how it goes!

                            I hope you're feeling better. Maybe we can start a special forum for EBV/CFS/FMS? Anyone who's reading this who might have these health challenges could participate! It would be wonderful to start a support group and see how the diet is helping our day-to-day lives.

                            Good luck!