If you or someone you know suffers from Chronic Fatigue Syndrome (CFS), you know how devastating this condition can be. While some may function well, others can have their lives practically ripped out from under them – unable to work, go to school, or engage in many of their favorite activities.
CFS is a somewhat controversial disease due to its lack of objective findings in patients. Through the course of its history as a known syndrome, its definition has changed dramatically, but it is currently diagnosed when a person has (1):
- Clinically evaluated, unexplained, persistent or relapsing fatigue that is of new or definite onset; is not the result of ongoing exertion; is not alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social or personal activities AND
- Four or more of the following symptoms that persist or recur during six or more consecutive months of illness and that do not predate the fatigue
- Self-reported impairment in short term memory or concentration
- Sore throat
- Tender cervical or axillary nodes
- Muscle pain
- Multi-joint pain without redness or swelling
- Headaches of a new pattern or severity
- Unrefreshing sleep
- Post-exertional malaise lasting over 24 hours
Chronic fatigue syndrome is most commonly found in young to middle aged adults, and it is about twice as common in women than men. The prevalence of this syndrome is estimated to be under 10 percent of the population. (2,3)
The most common conventional treatment options include cognitive behavioral therapy (CBT) and graded exercise therapy. While some patients experience relief with these therapies, there is always a hunt for better therapies that provide more relief. The role of the hypothalamic-pituitary-adrenal (HPA) axis may be an important new treatment approach that should be explored.
Chronic Fatigue Syndrome and the Hypothalamic-Adrenal-Pituitary Axis
The HPA axis is the body’s control center for reactions to stress, and in turn regulates many other body functions like digestion and immunity. When we interact with a stressor, the body releases a cascade of hormones which eventually reach the adrenals and stimulate the production of other hormones like cortisol (the main stress hormone), dehydroepiandrosterone (DHEA), and aldosterone. These hormones work to keep blood sugar elevated and helps the body retain sodium and fluid so that blood pressure stays high and blood sugar levels can keep up with the fuel demands of the brain and other vital organs during times of stress. This process is important in maintaining life in a true “fight or flight” response, but in the modern world we constantly activate the HPA axis for small stressors like traffic or missing our train. With constant activation, the adrenals can become “worn-out”. Someone with hypoadrenalism will experience fatigue, depression, and low cortisol levels – all markers that are similarly found in chronic fatigue syndrome.
HPA axis dysfunction is not currently evaluated in potential chronic fatigue syndrome patients as part of the diagnostic process, as evidenced by the CDC criteria listed above. However, looking at recent research, it is clear that HPA axis function is an important part of the symptoms experienced by CFS patients.
Hypoadrenalism (low or “worn out” adrenals) in its most severe state presents as Addison’s disease, which in industrialized nations is most commonly caused by an autoimmune attack of the adrenal glands. In Addison’s disease, some or all of the adrenal hormones are not produced in sufficient amounts, which as you can imagine, causes many problems including fatigue, anorexia and/or weight loss, nausea/vomiting, hypotension and/or postural hypotension, muscle and joint pain, salt cravings, sexual dysfunction, and psychiatric symptoms.(4) Chronic Fatigue Syndrome and Addison’s disease have many overlapping symptoms, the most important of which is fatigue.
Both Addison’s disease patients and CFS patients show low cortisol output. Morning cortisol levels measured in the saliva have been shown to be low in CFS patients (5), and 24-hour urinary free cortisol is also lower in CFS patients than controls. (6) CFS patients are likely to have undergone early trauma (7), which, even in healthy adults, is associated with lowered HPA axis reactivity. (8, 9) The lowered HPA axis reactivity often found in CFS patients with history of trauma is associated with having increasing symptoms compared to CFS patients without a history of trauma. (10)
Despite this research, it’s still not clear whether HPA axis dysfunction is a cause of CFS or if it comes as result of the condition. Nonetheless, it has been proposed that HPA axis dysfunction in CFS is a vicious cycle, meaning HPA axis dysfunction may be involved in the genesis of CFS, but it also propagates ongoing symptoms once the syndrome manifests. (11)
Whether HPA axis dysfunction is the chicken or the egg in CFS may be determined by future research, but for those of us trying to deal with it today, it’s important to determine whether normalization of the HPA axis improves symptoms. Treatment with replacement doses of hydrocortisone have been shown to be helpful but at the expense of adrenal suppression, (12) while treatment with low dose hydrocortisone (5 or 10 mg daily) was shown to be effective without associated adrenal suppression. (13) Another study showed that symptom responders to low dose hydrocortisone (those whose fatigue levels were reduced) showed significant increases in cortisol to human CRH, which reversed the previously observed blunted response compared to non-responders. (14) Though there are limited studies on hydrocortisone treatment of CFS, these studies show that improving cortisol levels is likely important in reducing symptoms.
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Improving HPA Axis Activity Naturally
Because there seems to be a connection between HPA axis functioning and CFS symptoms, it is important to make sure that your adrenals are working their best. Pay special attention to the lifestyle factors like sleep and stress reduction with mind-body activities for the best results. These are perhaps the most important (and most overlooked) factors for recovery of adrenal function and improvement of CFS symptoms.
Adrenal Testing
If you have been diagnosed with CFS and don’t know how your adrenals are functioning, it’s an excellent idea to do a salivary adrenal panel which will measure your cortisol output over four different intervals during the day. This is different from having your cortisol level tested at the doctor’s office, as that is a one-time test and doesn’t give you the picture of what the adrenals are doing the whole day. In some states, you can order your own test kit from directlabs.com. Otherwise, you’ll have to have your healthcare practitioner order one for you.
Diet
A healthy whole foods diet that minimizes food toxins and emphasizes nutrient dense foods (such as the Paleo diet) is an excellent start. A diet like this will be high in many of the nutrients important for the CFS patient which help the HPA axis function including Vitamin C (15,16,17) magnesium, (18,19,20) pantothenic acid, (21) and pyridoxine (22).
Patients with CFS who are on a Paleo diet may want to consider increasing their sodium intake. It can sometimes be difficult to consume a lot of sodium, and those with CFS and/or hypoadrenalism should be sure to get a fair amount of it so as to minimize the symptoms of low blood pressure. If low blood pressure is a concern it may also be a good idea to supplement with licorice root which potentiates the action of cortisol. (23) Note that licorice root supplementation is contraindicated if you have high blood pressure.
You’ll also want to consume foods (or supplements) with probiotic bacteria, such as kombucha, kefir, yogurt, and sauerkraut. It has recently been shown that the gut flora of rats has an effect on the HPA axis. Rats that had no exposure to microorganisms (germfree; GF) had significantly higher ACTH and corticosterone responses to restraint stress than did rats with normal gut bacteria. (24) Another study in rats showed that those exposed to endotoxin (like that which a human would be exposed to if they acquired a pathogen) displayed altered HPA axis activity. (25) Stress is known to alter the gut microbiota, and in turn this change alters the HPA axis. (26) It seems that normal gut flora is required for proper HPA axis activity and that clearing of pathogens and replacing lost beneficial bacteria with probiotic supplementation will likely benefit those suffering from HPA axis dysfunction.
Mind-Body Medicine
It has been shown that those of us who are highly neurotic and who experience depression and self-consciousness have blunted responses to stress tests. (19) When we work to change these thoughts and behaviors, we can start to re-train the HPA axis and feel better. Mind-body medicine techniques can help to re-train the HPA axis. Yoga, in particular, can help to reduce anxiety, depression, and perceived stress. (20) In a study on mindfulness-based stress reduction, 40% of participants had abnormal cortisol secretion patterns before the intervention and afterwards there was a change to a more normal cortisol rhythm. (21) The important thing is to find a mind-body medicine technique that you enjoy and will do on a regular basis. The more consistently you practice, the more benefits you’ll receive. Some examples include tai chi, meditation, deep breathing, biofeedback, the Feldenkrais method and more! Try them all and find out which one you like best.
Sleep
If you have chronic fatigue syndrome, don’t overlook sleep! Sleep deprivation and disordered sleeping cause HPA axis hyperactivity, (22) so make sure to get to get at least 7-9 hours nightly, and try to go to bed at the same time each night. Chris has some great tips about sleep in his upcoming book, Your Personal Paleo Code (published in paperback as The Paleo Cure in December 2014), so be sure to check that out! You can also read more about better sleep on this site here.
Time Management
Another successful strategy that helps a lot of my patients is practicing time management skills. A lot of us tend to run around like chickens with our heads cut off, trying to do everything at once but actually accomplishing very little. With proper time management, you can find time to fit in proper sleep, mind-body medicine, and make delicious, healthy meals and you’ll probably find that you get more done in less time. Check out both of Chris’ podcasts about time management here and here for more information. When we know exactly what we should be doing at any given moment, we spend a lot less time procrastinating. Plus, when we’re getting things done our stress level goes way down, helping the HPA axis to function more appropriately.
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Not sure why this article isn’t mentioning harm of GET and CBT which is scoentificallly proven , mentioned in the CCC and ICC and IOM report and now CBT and GET have been removed from the CDC website , nor supported by ME charities . The pace trial misrepresented its results and has conflicts of interest #cashnotcare http://www.centreforwelfarereform.org/news/the-making-opace-scandal/00335.html
Let’s all remember, in the history of the study of so-called chronic fatigue syndrome, it used to be called post viral chronic fatigue. In fact, having a viral illness at the onset used to be one of the official symptoms. Thanks, or not thanks to the Internet, the countless detours we find now in discussions of CFS are endless, folks!
No comment or reference is made of Chris Kresser article which does cover the vast array of causes of CFS and investigations , and heavy emphasis on trauma as cause .https://chriskresser.com/chronic-fatigue-treating-the-cause-not-the-symptoms/
This article fails to mention the vast amount of research on energy metabolism and ME and the harms of aerobic exercise, as identified by the #workwellfoundation as well as the harm of exertion to multiple organ systems ( cognitive , physical and emotional ) mentioned by the Institute of Medicine on their report on ME and name change to systemic exertion intolerance disease , after a year long review of the research literature , as well as patient surveys by the ME Association and Action for ME that reported most harms from graded exercise and most benifit from pacing . No mention is made of PACE trial independant reanalysis , which found authors had overstated their research results on benifits of CBT and GET . No mention is made in this artical on alternatives of Pacing or energy conservation , recommeded by the Workwell foundation due to objective CPET testing that found a damaged aerobic system and recommeds not to exceed anerobic threshold . There is also no reference supplied for statement that patients find benifit of exercise .
HPA Axis is neither new nor overlooked. CDC has been talking about it for years, to no effect (i.e., they still cannot identify patients, have no blood tests, and cannot suggest any sensible treatments).
It is not overlooked by others, either.
http://journals.plos.org/ploscompbiol/article?id=10.1371/journal.pcbi.1000273
I heard that Broderick was going to do an intervention study but nothing since. Don’t know if it is ongoing, or couldn’t publish due to negative results, or what.
However that theory has never been particularly interesting to me as I have never thought it adds up biochemically.
Just a point on trauma; this is not related to CFS. Neither is personality personality in illness studies are typically poorly conducted.
https://www.ncbi.nlm.nih.gov/pubmed/11708672
http://www.psychiatrictimes.com/comorbidity-psychiatry/identifying-and-treating-common-psychiatric-conditions-comorbid-myalgic-encephalomyelitis-
http://brainblogger.com/2010/10/22/the-personality-of-chronic-fatigue/#comment-1371818083
CBT and exercise have been demonstrated to have a weak to nonexistent evidence base. Additionally, serious questions remain about the safety of exercise interventions in this population.
http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/
http://www.senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/
https://www.meresearch.org.uk/news/ahrq-review/
http://iacfsme.org/ME-CFS-Primer-Education/Bulletins/BulletinRelatedPages5/Reporting-of-Harms-Associated-with-Graded-Exercise.aspx
To learn more about this disease, look at the most interesting research at the Open Medicine Foundation, as well as at the Centers for Infection and Immunity and so forth, and read the literature review at the National Academy of Sciences. There is nothing strictly diagnostic but there are tests that can help show what is going wrong.
https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness
https://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases
http://www.openmedicinefoundation.org/frequently-asked-questions/
https://www.mailman.columbia.edu/research/center-infection-and-immunity/chronic-diseases-microbiome#cfs
https://batemanhornecenter.org/patient-education-video-library/
http://www.meresearch.org.uk/our-research/completed-studies/
http://www.nova.edu/nim/index.html
http://med.stanford.edu/chronicfatiguesyndrome.html
Best,
Tal
As the late, great Dr. William Jefferies would point out, “unexplained chronic-fatigue” has been in the medical literature for centuries, and the more recent incarnation was “post-viral” chronic-fatigue followed by the post-viral “outbreak” in the 80’s which led to the coining of the phrase “Chronic-Fatigue Syndrome.” Jefferies became fascinated with the effects of viruses, injuries, trauma, and various stresses on the HPA-Axis often leading to deficiencies in the production or utilization of the body’s most beneficial hormone, cortisol, which led him to a lifetime of successfully treating CFS with low “therapeutic” doses. Low cortisol has certainly been demonstrated in many cases of CFS, although that whole topic has become ridiculously distorted partly thanks to the glorious sharing of every possible detour via the internet by misguided “patients.”
If Addison’s disease is 70 percent caused by auto immune attacks on the adrenal cortex. Why do endo ‘s wait till there is only 10 percent of the cortex left before testing for anti adrenal antibodies???? And finally believing someone has adrenal issues?
Hi everyone,
I have had CFS since 1994 (Giardia infection not treated until 1997).
Some things I’ve tried that helped me might help others:
1. Low Blood Volume
I was advised to drink more water and got into the habit of drinking about 3L per day. This caused my body to get ‘stuck’ in a flushing water mode, i.e. I was urinating a lot as my body would not hold fluid.
I looked into electrolytes and made my own mixture of salty water. It gradually turned off the flush switch and improved things a lot.
2. Magnesium/Calcium Balance
Shaking legs, migraines, sore muscles, etc. can often be due to low magnesium.
I take magnesium malate 133mg x 4 per day (5 on exercise days). The magnesium is chelated to malic acid which is recommended for CFS/FM.
I take calcium citrate powder 200mg x 2 per day.
I have tried taking more calcium as it is recommended to be 800-1000mg per day, but when I do I suffer pain in my jaw, so I listen to my body and stay at 400mg/day.
3. Digestive Enzymes
If your digestive system isn’t strong how can you absorb the nutrients from your food? I take 3 capsules before smaller meals and 5 before bigger meals.
I also take 2 tsp apple cider vinegar, 1 tsp honey in about 80-100ml of warm water before each meal.
4. Sleep Problems
I take melatonin: 150mg about 1 hour before sleep time.
Before I started taking this I was having terrible problems with sleep patterns.
5. Nutrients
I take many nutrients after my main meal (which is at around 1pm):
Glucosamine
Sulfur (MSM)
St John’s wort
B complex
Selenium
Co Q10
Iron suphate drops
Chromium drops
Milk thistle drops
Vitamin E
Vitamin D
Brewer’s Yeast (B complex)
Molasses
Olive leaf extract
Iodine (kelp powder)
My main meal is vegetables with 45g of chicken:
carrots
sweet potato
swede (turnip)
green beans
broccoli
cauliflower
spinach
6. Exercise
I walk 15-20mins each morning.
I do stretching and yoga for about 10mins. each morning.
I do an exercise program to increase muscle every 3 days for 37-40mins. I know some of you won’t be able to do this, but when you improve you can slowly build up your strength.
Before I started the regular exercise program I suffered from pain in my muscles/joints, and most of it has gone now.
I hope some of this helps you.
It is hard when you are struggling just to try and be ‘normal’, but you can do it. You must try to strengthen your resolve and be your own hero.
Put aside everything else and focus your energies on what can be done to help.
My strategy has been nutrition/diet, exercise, sleep/rest, a regular schedule, and has strengthened by will which helps with everything else.
Good luck.
I have experienced CFS myself since i was 27, am nearly 50 now. When i first contracted it i had pneumonia, bronchitis and glandular fever. Lots of antibiotics also. My body finally collapsed after i put a hair colour in. As the colour was on my hair, i could just feel my body collapsing.I have never stopped looking for answers and this is only just my thoughts but I believe chemicals is one of the causes for a lot of health problems today, along with over use of antibiotiics, our adulterated food which is gmo and also grown with strong herbicides, vaccinations, viruses and heavy metals, and stress. I believe all this can cause immune disfunction and gut flora disturbance, which in turn allows parasites to take hold and gut dybosis to occur which can lead to immune disfunction and toxins being released into the body, causing adrenal fatigue and thryoid issues and hormonal problem, i feel this may also cause an inflammation in the body and a host of problems including gene alteration . They say death begins in the bowel. My story could take forever to write. Natural things have got me to functioning, not cured but trying to live a life. It includes healthy organic foods, no chemical use and natural products. I have never stopped looking for answers and met different people who were cured, all different things worked for each one. One story which intriqued me was by Annie Hopper and her recovery was by brain retraining. In the last 6 months i have came across a wonderful Dr in Sydney who is a Professor in his medical field. I have had over time numerous colonoscopies and heaps and heaps of blood tests, all coming back negative. So frustrating. After tests with the Sydney Dr he confirmed i had parasites and gut dybosis, his treatment plan includes particular antibiotics for 10 days and then retesting, once i have ridden my body of parasites i am then to go on another couple antibiotics for months up to a year in order to bring down the levels of bad bacteria in the bowel and than a FMT is undertaken to replenish the bowel with good bacteria. FMT is effective and works differently to man made probiotics. He is having great success with people with crohns disease, and other auto immune problems, he is also undertaking studies on autistic children and having good results. Depression is a sure tell sign of gut issuses. Some Drs will not even acknowledge what this Dr is doing, so sad, it may sound strange but maybe it is the answer, maybe the answer is easier than what we think, he is a very intelligent Dr who is opening his mind to different treatments which is maybe not considered mainstream to other medical professionals, but these studies have been undertaken with proven results. There is also an article wrote called Bad Bugs by a lady and her recovery to health and Dr’s not believing her. So sad this disease really that people do not understand it or believe it. Maybe they need to change the name of this illness, because this is far far more than just fatigue, so many other symptoms come with this dreaded illness. Would love to hear what people have tried
Hi there my daughter who is en elite level gymnast has come down with what I think is cfs she has had blood tests which show nothing and felt really tired etc and achy muscles when training she has been like that for six weeks now on magnesium vit c adrenal tabs and eating all the right foods she is so fed up and wants to get back to normal training any ideas of how she can improve herself quicker
I know this was a while ago but I wanted to respond. First, I am sorry your daughter is or was ill. It’s not uncommon for high-level athletes to get this likely because it’s a fairly common disease and good health practices are not preventative. Some people have overtraining which could seem nominally similar but you or a coach should have been able to identify that.
If your daughter is still ill, look at the Open Medicine Foundation because they have very promising research. One of the lead researchers has an ill son and is very determined to solve this as soon as possible.
I don’t want to discourage you overmuch but I have been ill 20 years. If she has something like what I have, prepare for a wait but if you can, try to do something to improve the situation. Please watch a documentary called Forgotten Plague, even if your daughter is well now. And look at the ME Action Network website. Thanks.
Thank you very much for writing. Please advise if you have tried low dose of Hydro Cortisone to support the adrenal.
hi ron robbins,
thanks for all the tips.
I am going to try your advice for a while as I always imagined adrenal fatigue was at centre of this plague.
thanks!!
Yes Greg, “unexplained chronic fatigue” has existed as long as mankind’s had adrenal glands capable of stress-hormone imbalances. Whether a virus, emotional stress, physical injury, genetic predisposition, environmental factors, aging, or a combination, it’s obvious that the delicate balance between “fight-or-flight” epinephrine and the amazing long-acting cortisol so necessary for life and health is easily disrupted. But unfortunately, cortisol and long-term cortisol therapy have gotten a bad rap, and the internet has unleashed a giant wave of so-caled “CFS” theories having little or no relation to the original definition, or the “unexplained chronic-fatigue” known for centuries.
It’s now been 21 years since my “accidental” CFS “cure” in the form of aggressive prescription Cortisol meds given to treat severe asthmatic symptoms unresponsive to the usual inhalation treatments, epinephrine injection, etc.. Folks, either CFS is connected to the same “unexplained chronic-fatigue” condition known for centuries, or it’s something new and novel. In the eighties, CFS symptoms always included those of hypoglycemia and IBS along with all the others. CFS always had a definite onset, and always followed a “trigger,” such as virus, unusual stress, injury, etc.. For some reason, the “stress-hormone” connection alluded to in this article is still being largely overlooked, despite the obvious low-cortisol/high-epinephrine stress-hormone imbalance indicated by virtually every symptom and possible cause.
This comment is really valid. My (UK) family doctor and endo both refuse to accept any connection between HPA dysfunction and my ongoing symptoms, only offering antidepressants for the pain, which is standard UK treatment. This is despite my morning salivary cortisol being really low (privately tested, the UK national health service doesn’t believe in saliva testing!), because whenever I have an adrenal function test (short synacthen test, insulin stress test) my response is really strong. Does anyone else have a similar experience with provocative test results which absolutely do not mirror their day to day experience? Do Kelsey or Chris have any views on this, please?
Hi Olivia,
Suggest you try a simple at-home blood-sugar test and if your morning fasting level is abnormally low, you probably have “non-reactive” hypoglycemia which is often caused by low cortisol. If this is the case, find a doctor who will get you some prednisone and try 5mg/day, (with a good breakfast) and see what happens . . .
Hi, Ron, and thanks. I have not been able to find any doctor in the UK who will prescribe either cortisol or any of the derivatives (you suggested prednisone) unless the patient (me!!) is definitely Addisonian. They won’t even prescribe corticosteroids for RA any more, preferring to offer anti-malarials, instead. The whole concept of low dose cortisol is alien to them – and, yes, I have handed them all the relevant info from Dr Jefferies’ book, too. I’ll have to look into the non-reactive hypoglycemia, though I’m not sure what good it will do given the above, but can at least assure you that I have a good breakfast! Thanks again.
Hi again,
Wow, this really IS the “taboo” treatment-option. I was very fortunate to correspond (and have one phone conversation) with Dr. Jefferies in ’94 and he was the “real deal,” one of the pioneer researchers to use Hydrocortisone (cortisol) in clinical tests and in his own private practice, which led to his medical textbook “Safe Uses of Cortisol” which became my “bible” following my accidental 4-day complete recovery from a 7-year bout of CFS which in my case followed a severe respiratory virus combined with a period of unusual stress (extreme work-load and finishing-up my first jazz-CD). I knew nothing about adrenal stress-hormones and at first, thought I had accidentally treated some “inflammatory” condition, but slowly all my symptoms began returning and I was determined to stay healthy, leading to my research and long-term, low-dose Cortef and eventually prednisone which I tapered off. The blood-sugar testing was the icing on the cake, as I believe “non-reactive” hypoglycemia to be key to this low-cortisol form of CFS.
Hi Ron Robbins, I believe I’ve had CFS since the age of 23 and still have it (i am now 27), my guess is my trauma of a dying loved one is what did it.
I just remember sitting down one evening eating my dinner not long before going to sleep and i suddenly had a crazy head rush and was overcome by pure weakness, at first i was scared i had a blood clot in my head. The head rush was a precursor to the rest of my symptoms.
The prime symptoms of my health problems was sudden leg and arm weakness. The whole arm/leg weakness is supposedly a common first sign of CFIDS that people get. Now i am seeing an endo privately. This is because I found out i had low cortisol saliva results; the lab said i have hyperglycemia and circadian rhythm type issues.
It is upsetting because i have lost many things from having this disease, i will end up going bankrupt before long due to having no diagnosis or cure. It has robbed me of my strength and energy. So i guess my question to you is; what can i do? Are there certain blood works i should go for to narrow down the problem?
Some have suggested me supplements (which i take currently) and some did suggest getting hydro-cortisone from the states but i have put off HC until i know more. Did you ever recover from CFS? Thank you very much for your time if you choose to reply.
Jay, I’ve never seen or experienced your extremity-weakness symptoms and never saw that on a CFS list. What you describe sounds more like a mild stroke or something, not to alarm you. And if you already have high blood-sugar, taking any form of cortisol would only raise that even more. Not diabetes? Luckily, I consider myself “cured” although I was on a synthetic cortisol for 7 years which kept me free of 11 symptoms. Hopefully you can get fully checked out and get to the bottom of this, good luck!
Hi Ron, thanks for the reply and suggestion. I typed hyperglycemia by mistake due to mind fog and not thinking properly.
To correct myself the lab said “levels reflect a degree of adrenal fatigue especially in the area of glacaemic control”. I am thinking this is why i often wake up with “extreme” hunger and thirst and sometimes fall over when i suddenly get up from lying down?
My endo is doing a blood glucose fasting test next time i see him, i have noticed above you said getting that done is important.
I went to a few forums online where people reported weakness in legs and arms as CFIDS. On the evening i got this i went to accident and emergency at my local hospital, my BP and ECG was completely normal.
I just remember one of my arms was shaking violently and one of my legs was feeling ice cold.. but my brother said my leg did not feel cold when touching it on the outside.
I had a head MRI a month after this to see if i did have something going on. MRI came back fine and showed no problems/damage, even had a full essential blood test, all came back fine. But still i have memory, concentration and brain fog issues.
It is baffling. Currently the adrenal/pituitary(cortisol) supplements i take make me feel somewhat better, i can walk further than i used to (less fatigue).. but my weakness just seems to be always there and doesn’t seem to actually improve.
Having said that i am confident its something hormone related.. my muscles shake like crazy after exercise or when I’m going to sleep including tremors etc.
When two people are arguing in front of me my body curls up and starts shaking as if it is under attack. Fight or flight syndrome was my thinking as soon as i noticed that, i easily get angry and aggressive now since that time i first got CFS (that is providing that is what it is).
Prior to that i was doing meditation and teaching relaxing techniques to my students/clients, i was the most calmest person ever, nothing could rattle me at all. However nowadays an extremely calm person as myself gets easily annoyed and feeling under attack at things that would never have used to be a problem.
This is why I’m convinced its definitely hormones and not respiratory/circulatory related.
Anyway i will leave it there, I’ll see how it goes with my endo and report back. Cheers 🙂
Hi Jay,
Thanks for your reply, and maybe you have Addison’s
Disease and really need HC replacement? Do you happen to know what your fasting blood-glucose level is? You don’t need a doctor for that, can test with a home device. And, how much HC do you take?
Hi. I’ve had first, leg weakness, then it went into my arms, the weakness, after I spiralled into having half of the severe symptoms of CFS-ME, in 2011. I was diagnosed with CFS, finally, in 2013. But the orthostatic intolerance (feeling like passing out, or almost collapsing (halfway, which is presyncope) is, for me, POTS, Postural orthostatic tachycardia syndrome, with hypotension. I believe that sometimes goes along with CFS-ME, the POTS. My cardiologist had me tested in multiple ways, before the tilt table test, which shows tachycardia (after standing 15 minutes, it can come on, sometimes, the heart rate over 100 beats/min.
Ron,
May I be in touch with you directly?
Hi Olivia, I am wondering if you got anywhere with this since your last post? I am also from the UK. I just wanted to tell you that you are not alone, my morning cortisol level was super low.
I am getting some test done by my endo in a few weeks that uses injections and takes 6 hours to do. I wish i knew the name of it, i thought it was maybe the synacthen test they ordered but when i remember him saying the word it sounded different, the name was much longer sounding.
My endo was open to the idea of me having a saliva testing and seemed content with the idea (I’ve gone private), the NHS i find useless in terms of getting what i need and just dont seem interested in getting to the bottom of these issues, they seem to only offer anti-depressants and ibuprofen; as if any of that band aid solution stuff is going to do anything!
My private GP has been helpful but insists he does not know much about CFS except that he met a very good specialist in Belgium who “cured” an English girl with severe CFS, she was in a wheel chair and everything, now she is running and everything. I have considered her someone to take a chance on in the future if i see no improvement this time next year.
Hello, Jay. No progress for me I’m afraid. To be honest I’ve spent the last 12 years trying to get progress and am currently in a ‘down’ phase where I need to just stop and reassess my path. I hope that your tests show something which can then be addressed by your doctors – you are very lucky to have found a private doc who is open to the saliva testing option. Wishing you health.
My original question, though, and I’m still open to responses on similar experiences, was whether anyone has had low morning cortisol on saliva testing and then normal results from the provocative blood tests?
Hi Olivia,
Just a reminder that Dr. Jefferies (“Safe uses of Cortisol”) didn’t rely so much on tests but would routinely prescribe two weeks’ of 20mg. cortisol/day for all kinds of “unexplained chronic-fatigue.” 5mg. prednisone is the equal-strength option that worked for me, taken in the morning with a good breakfast.
Hi, Ron. Yes I am aware of that and the equivalent doses – can’t tell you how many times I have read the book. But as I explained I have been unable to find a UK doc who will prescribe either unless I am diagnosed with Addison’s. They do not understand that safe doses do no further harm. The sheer frustration of having the same conversation with them over and over and over again is the reason I have decided to temporarily ‘stand down’ – the stress is doing more harm to my already fragile health-state. I will probably return to the fray some time in the future. Meantime, would still be really interested to know how other people’s blood and dynamic test results have compared to saliva test results, for cortisol, please.
OMGosh I think this is me. Autonomic tests done at Mayo indicated I have high norepinephrine …Can you tell me more about supplementing with cortisol??
I should specify further…
I was diagnosed at Mayo with CFS and hypoadregernic POTS. They seems to be deeply intertwined – I can’t determine where one starts and the other stops.
I also have symptoms of hypoglycemia – which is not as severe now as I manage it carefully.
Wow, everyone here is in much better shape than I was!
My last three CFS years (’91-’94) I was zombie-like, such complete brain-fog/no sleep/headache, etc., I literally didn’t read or write a single word or have the energy to search for treatment. My “cure” was completely accidental, and I can’t take any credit at all, just lucky. But I had made a promise to myself that if I ever found a cure I would do my best to spread the word!
I can relate to your symptoms alot. I’ve had CFS and FM for some 30 years now. I’ve been getting progressively worse. Live in the “zombie zone” most of the time, can’t think, sleep well, write, etc. most of the time, but then I get a brief “wave” of energy, but then pay for having tried to “live” for a short while. I can’t stay up to read all of this thread. I’ve got to find a doctor or somebody who can help. Are any of you even still watching this thread?
Hi,
Yes, I’m still watching. Obviously lots of “true CFS” cases (that involve the original symptom-list from the 80’s) are related to stress-hormone imbalance, specifically cortisol / epinephrine. If your symptoms include those of hypoglycemia but are not relieved by eating, if you have no normal sleep with heart racing, headache, joint pain/stiffness that migrates, irritable-bowel syndrome, and you had a definite onset of symptoms following some stress/illness, try taking about 5mg. prednisone/day for two weeks. This is basically what Dr. Jefferies did for what they used to call “unexplained chronic fatigue. He used the equal amount of cortisol, in the form of hydrocortisone (20mg.).
Hi all, I am not here to say anyone’s wrong or right and I have read every single post and have learned a lot. I don’t want to say anything about anyone’s statement because I think all of us together fighting for a cure is the best thing that we could ever do for eachother. Listen to everyone and keep an open mind because you never know what Information will lead to a cure for each and every one of us wether it be that CFS is caused by one single source which I highly doubt but that’s my own opinion. I was bitten by a tick when I was 21. I knew nothing about Lyme disease and I mean nothing. I developed a circle rash but it was very small actually. I thought it was ringworm to be perfectly honest. So , I purchase medicine for ringworm. When I applied the medicine to the ring worm and it kept growing to the outer edge of the medicine. Eventually it grew to the size of a can of soda. I showed it to a friend that was a nurse and she said OH MY !! That’s the Lyme rash!!! I flipped out lol. I immediately went to the ER where 10 different doctors came into the room and all acted like they had never seen it before and I was a specimen in a science class project. Truly felt like an alien. The doctor gave me two weeks of antibiotics and sent me on my way. He said take the antibiotics and you will be fine. I took the antibiotics, the rash went away and I was cured!!!! No follow up visits, no blood tests was ever done and I Never thought about it again and never talked about it again for a long time. After that about (2 months at the most) I started having terrible symptoms. I only weighed 125 lbs so weight had nothing to do with my illness and pain. I had always been athletic so to speak. My back started to hurt, every joint In My body started to hurt, I had terrible neck pain, headaches. My knees would literally go out of joint so bad at times I could not take a full step without bending my knees slightly five or so times before they would go back in Place and So I could take a full step. I had muscle spasms In my back so bad it literally looked like someone went thru my stomach and it looked like their fingers were trying to poke thru my skin on my back and they would move up and down both sides of my back. It was really scary to even watch this happening. At times it felt like someone was pouring hot water thru my veins in my neck. I would be so confused and Brian fog isnt even close to the word to explain how I was feeling mentally. I would go shopping and know exactly what I was going to buy as I would write the good old list. So I am going to get chicken breast and I would find myself down In the steak section just standing there like I was lost. Then I would snap out of it and look around and tell myself , what the heck are you down here looking at steaks when I was going directly to get chicken breast. I developed a peptic ulcer and my doctor told me it was stress I was feeling In my belly and he gave me Xanax and Zoloft and he said I was depressed. I told him If could only figure out what this pain was in my belly I think I would be just fine. I had never been to a dr be of this. Only ER visits for stitches once or twice In my life and when I was bitten by that tick. This doctor stuff was all new to me and I really didn’tike it at all. Well the acid from my stomach ended up burning my throat so bad I had to have throat surgery. At the follow up with the throat dr that did the surgery, he asked me if I had ever had an upper GI? I said what’s that??? He said it’s where you drink this liquid and we take pictures of your stomach. I said no but lets do it because I know something is wrong in my stomach. They found I had a peptic ulcer after 6 months of its all I. Your head bull crap! I thought my girlfriend was trying to poison me and every stupid thing you could possibly imagine. My muscles would twitch all over my entire body 24/7. I was down to 108lbs and my father asked me if I was on drugs. I said dad, I wish I could tell you yes. Atleast that would be a reason for all this craziness. This lasted about a year and the major symptoms started to slowly go away but never fully. Again, I knew nothing about Lyme disease and the symptoms until I was 36 years old. I was bitten by a tick again and Now I had a computer!! So I started researchIng Lyme disease. OH MY GOD!!!! I took a hard look back and I had just about every single symptom that was listed. Remember, I took that few weeks of antibiotic, the rash went away and never once did I think anything that went on in my body had anything what so ever to do with the tick bite. I have developed hypothyroid, chronic pain, Insomnia, total numbness in my hands at time but no sign of carpul tunnel as I have been tested for that along with the possiblity of a pinched nerve In My neck. I have had every blood test to check for everything I that could possibly cause these symptoms and everything comes back negetive. It’s all in my head. That’s l I want to do is be sick. If you met me you would know in twenty seconds that this is not the way I live my life. Lyme bacteria hides in our body and the tests only check for antibidies. Well , if your immune system doesn’t see a foreign Invader it doesn’t make the antibodies that these testes look for and if you don’t have antibodies guess what ??? You don’t have Lyme disease!!! Totally and absutley the furthest thing from the truth. I do not want to push my illness and symptoms on anyone and hope none of you have it, or ever get it. All I can say is PLEASE just look into this disease. If your a skeptic, go to YouTube and type in my horrific Lyme diseased blood and watch the entire video and listen very closely to what the man is saying. And if you want the entire truth about Lyme disease type In dr macdonald and Lyme disease. He has multiple vidoes on YouTube. He isnt selling anything , promoting anything. All he does is give you Information that will blow your mind about this disease. From how it started all the way thru to how it’s found in the Brian of Alzheimer’s patients that donated their body to science and he has the pictures and the proof to back up every one of his statements. Knowlege is the best thing we can all do for ourselves and for our loved ones. This is truly a government (CDC) cover up and as far as I am concerned the biggest money maker for the medical community that exists till this day and I really think they want to keep it just the way it is. If you do nothing at all and never think about Lyme disease again In your life just please do this for yourself and for your loved ones. Please look at these videos and listen to everything this Dr has to say and I mean everything. For your own good! I don’t know what causes CFS, FM, MS and l the other diseases but I think the government does and has a major role in all these diseases and I am sorry if no one agrees with me and I have no hard feelings towards anyone who does not agree with me. All I ask is just listen and look at this Drs videos, look at the proof he gives in great detail then make your mind up as to what you believe is going on. I wish every one the best of luck with your health and I wish for a cure for all disease but as long as there is BIG pharm. That’s never going to happen!
Good luck to all !!
Treating Candida and eliminating sugar have made a tremendous difference in treating my Cfs
I enjoyed your article & learning more about this body illness.
Back at the end of 1997–99 both myself first, then eventually my husband were dx with FMS. We both at different times had a unusual virus that was unexplainable but mimicked Lyme to some degree. Mine lasting 3 months, his about a month. My symptoms were more aggressive. Eventually, due to very highest of the levels of stress continuing in my life, I became sick. Resulting in being given the dx of FMS. Now, knowing what I do, the way my body is, I know I have AF, adrenal failure/CFS. I have pain but my fatigue over rides that.
The hardest part to having such sever fatigue is wanting to eat right, or exercise but not having the energy or stamina any longer to do the right things. Having a spouse with a similar illness, his is more neurological due to a head injury, at least we live in harmony. Messy but understanding each other, We can’t even motivate each other. It’s a vicious cycle of trying to be in control of a life we really have no control of.
Hi Jeanne,
I was just reading your post and wondered how you guys were doing. I know that in my own case, I wasn’t even able to read, write, or research anything for most of the seven years I was sick, and was very fortunate to discover the stress-hormone connection in an accidental way. In the last three years of my CFS, I can honestly say that along with all the other symptoms, I had absolutely not one minute of normal deep sleep, which definitely kept the cycle going. Normal cortisol levels are necessary for normal serotonin levels which are needed for sleep. Also, normal sleep is necessary for normal cortisol levels, what a vicious cycle!
The avoidance of low-dose cortisol meds and “mild cortisol
deficiency” as diagnosis is baffling after all these years and supportive work of other doctors around the world who were “students” of endocrinologist Jefferies.
This article is great, I totally agree with any natural remedies.
Natural remedies are best for any health problems. I always prefer them or Exercise and Yoga.
Here was a great informative article on CFS and its stress-hormone connection, and sure enough, it became a forum for every crazy detour and tangent, not related to the topic at all.
Mental issues, vaccines, mystery microbes, flaky treatments, probably even alien-abduction and chem-trails have been mentioned on this forum, while endocrinology is ignored. So go ahead and ignore the long history of “unexplained chronic-fatigue” affecting folks throughout the world, with obvious stress-hormone indications, verified by some wonderful, dedicated scientists and researchers, and follow every new internet trendy fad. What’s sad is, there are lots of real CFS patients out there who are missing the boat. Ciao!
Thank you for posting your own experience and cure here as it gives good information to others and offers hope. My feeling is that you really did have CFS and really did happen across a cure that worked for you and may work for others and is worth looking into. Some say that it is incurable and that if you were cured that you didn’t really have it in the first place. My CFS has largely gone now but can resurface and so I am interested to check out what you have recommended here.
All the conspiracy, vaccine, they did it to us mentality is I think part of the negative, victim mentality that can be part of the hopelessness that accompanies CFS, but it does get in the way of proper debate and gives ammunition to those who think that CFS sufferers are somehow mentally ill.
Thanks for your response! In the “old days” before internet, we didn’t have such easy access to info, but there wasn’t nearly as much “floating b.s.” around, either. I first learned about “non-reactive” hypoglycemia, for instance, from endocrinologist Jefferies’ medical textbook, “Safe Uses of Cortisol,” and became aware of its importance in CFS. I never would have imagined myself reading an endocrinologist’s book, but that was 20 years ago following my lucky
accidental CFS cure that also began my new interest in
stress-hormones and their underrated effects.
Talking about “victim mentality” is a red herring. Saying that if one thinks outside the box, that gives “ammunition” to people who claim CFS is “mentally ill” is ludicrous. If one doesn’t think outside the box, one lives in denial and ignorance.
As far as the cortisol perspective, it’s is just one more thing to add to a long list of things that a person with CFS can experiment with if they choose to. Debating it is a waste if time. If one wants to experiment with it, just do it. End of story.
The cortisol perspective is the only one that explains why 4x as many women have CFS (more delicate hormone balance), and is the only one that can account for the inflammatory and hypoglycemic symptoms that used to be a part of every diagnosis. And, is the only scenario providing a mode of treatment as opposed to endless new detours and wackiness we’ve seen pop-up over the past two decades.
The hundreds of thousands of people who are labeled initially with have gulf war syndrome go out on disability with the label of CFS. you think they have cortisol problem. most are men. There was a cover up of that also.
It is well known that immune system is up regulated and natural killer cells in most are very low… Were yours ?
I never had blood-work done when I was sick, and actually never found a local doctor who treated CFS. And yes, there seem to be lots of similarities with Gulf War Syndrome. Considering this forum was started by an article on CFS and stress-hormones, why not try and stay on topic a bit?
To lend some insight.. i am a guy with CFS, i believe most is caused by trauma of some kind, if we get too much in the trauma our body becomes sort of defunct from all that built up emotional tension we have. I think the reason women get it more than men in everyday circumstances is quite simple, i have worked this out myself.. women are generally more empathic due to their feeling function whereas men use thinking function more so women are basically juggling more things in their mind (a sort of universal responsibility) but they are also effected more by painful situations, for example a woman is more likely to get trauma from having a loved one pass away compared to a man. In my case i had a trauma over 3 years ago due to see someone die, i had a build up of depression and i ended up with CFS because of it. As someone said above though men can get this as well.. but the Gulf War syndrome thing is obviously due to trauma and all the input the body cannot take such as loud noises, cries for help etc etc. It is traumatic.
This is not me saying ALL CFS is about trauma but i believe much of it caused by trauma, i have however seen people who have CFS and they are adamant they were never depressed on getting it which might be more infectious in origin such as having lymes disease etc. CFS is simply our body going out of whack, i am hopeful that within the next 20 years (hopefully sooner than that) we will have a crack down on the research for his deadly illness, i just wanted to share this in case it helps. I study psychology for a living pretty much so i am 100% sure that women get CFS more in everyday situations due to taking on much responsibility for others (a woman is more likely to worry about everyone else than themselves). I am not putting this forward as some kind of “females are superior thing”, its biological and built in to women.
It is due to prolonged bottled up stress states.. prior to getting my CFS i didnt feel like living.. due to death of someone close to me and some other things that also made the situation worse. Being in the counselor field i have developed feeling function which most men lack but may develop later in their lives (look up Myers Briggs if you dont believe me). I currently on nutri adrenal extra supplements, they have helped somewhat with my CFS but i have yet to go the hydrocortisone route, but i am going to see what my endocrinologist says first regarding my ACTH test.
For whoever it helps..i think this is important consideration that anyone who has a dominant feeling function type personality is MORE likely to get CFS (look up Myers Briggs personality types to understand what i am getting at). I believe i am right in saying this but i would love science to test my theory correct to see if in fact i am right. Yes males can have dominant feeling function as well.. but usually females have dominant function more than men do on average. However i believe today we have very stressful lives that is allowing the illness to become more of a frequent pest. For all those suffering CFS (me included) keep fighting the good fight. I am sure the answers will come soon on how to combat this illness once and for all completely in great detail.
Ron,
Is it necessary to remain on cortisol indefinitely?
Hi there,
No, I don’t think so, in most cases, and Dr. Jefferies probably would say the same, in CFS cases. In my own experience, it was about 7 years, the same span I was sick. I was always tapering the dose, and watching symptoms closely. Reach me at [email protected]
After taking hydrocortisone I developed a big ovarian cyst, then I googled and found lots of women having this same side effect. CFS is not adrenal fatigue, I even took adrenal supplements several times, they did not work, they are useless for CFS. Every single Naturopathic doctor I’ve seen wanted me to take those supplements or Cortef even though I told them that they didn’t work in the past. Who said that doing the same thing over and over and expecting different results was madness?
To my knowledge, ovarian cysts are not a side-effect of taking cortisol, and there isn’t a “naturopthic” doctor alive who recommends or could/would prescribe Cortef or any other prescription form of cortisol. One of the world’s greatest pioneering Endocrinologists, William Jefferies, was prescribing low-dose cortisol for “unexplained chronic-fatigue” way before the term “CFS” even appeared, and he personally counseled me in my own recovery 20 years ago. Everyone and their brother these days thinks they have CFS, but in the old days it required multiple symptoms, all sharing with those of “mild cortisol deficiency” and the related “non-reactive” hypoglycemia.
My ND works with an MD that can get the prescriptions of cortef for him. Also an integrative MD that studied naturopathy prescribed cortef for me. Yup, there are NDs alive that can advise the use of cortef.
Plenty of anecdotes stating that hydrocortisone caused ovarian cysts, I don’t think those are coincidence; more research is needed.
With all due respect, your particular CFS may not have a stress-hormone connection, but in the “old days,” there were a lot more symptoms correctly linked to the conditions, such as “Reynaud’s Phenomenon,” postural hypotension, hypoglycemia (non-reactive), irritable-
bowel syndrome, etc., that all pointed in that direction.
The discussion of CFS nowadays has strayed far from the decades of “unexplained chronic-fatigue” mentioned in the literature way before the terms CFS and FM ever existed. Is CFS some new illness, or is it largely a stress-hormone imbalance (with cortisol deficiency) that can occur from viruses, injury, stress, etc., and has probably existed since we lived in caves?
Hi, I was receiving injections of a corticosteroid (kenalog) over a period of 2 years. It caused me to have an ovarian cyst so severe I needed emergency surgery to remove the entire ovary, as the cyst had strangled and killed the ovary, making it necrotic. I was told that there can be a hormonal disruption factor from steroids by the surgeon who removed my ovary. None of these things exist in a vacuum. She is right – more research is needed. There is only anecdotal evidence now, but there absolutely is a connection. I also have CFS and I’m investigating the possibility of low hormones playing a role in all of this, as while I was pregnant I felt so much better.
DID EVERYONE FORGET THAT CFS AFFECTS MOSTLY WOMEN, SUGGESTING A HORMONAL BASIS (LIKE THE
ARTICLE MENTIONS)?
Where did you get this information? It affects equally men and women. In any age. Lots of young men get CFS.
Yessir, it definitely affects both, but has always been
known to hit mostly women, that’s been a part of most
CFS descriptions for decades, nothing new.
Just looked it up again, according to the CDC
the ratio of women-to-men with CFS is FOUR TO ONE.
CFS has been linked to vaccinations going way back to the 1950s. This is the reason there is a cover up.
You are certainly entitled to your opinions. However, humans have always had stress-hormone imbalances, just as they’ve always had “unexplained chronic-fatigue.”
After a seven-year bout caused by a combination of severe respiratory virus, stress, and overwork, I slowly developed a classic case of CFS, after being a complete skeptic as it was quite a trendy news-item in ’87. Seven years later, an unrelated hydrocortisone regimen given for severe asthma reversed these symptoms in four days; Irritable Bowel, neck/jaw pain and stiffness, total insomnia (no sleep at all for 3 years), brain fog, extreme light-sensitive eyes, nonstop headache (3 solid years), exhaustion, and more. My recovery was so dramatic, I went to my local university (UC-Irvine) to research hydrocortisone (cortisol) and possible link to CFS. That’s where I discovered Jefferies’ medical text, “Safe Uses of Cortisol.” What’s ironic is, I had been unable to read or research anything for years (headache and brain-fog) yet here I was soaking up “endocrinology.”
My cure quickly started fading, until starting low-dose maintainence for several years, with Dr. Jefferies’ support.
Interesting that I was sceptical as well, even made fun of people claiming having CFS.
Where do one finds a doctor who even understands what you r talking about cortizol and CFS?
Hi again,
Most doctors are still opposed to low-dose cortisol (hydrocortisone) long-term therapy, but most will probably indulge you with a short trial. If your symptoms have all the “classics,” including inflammatory and low-blood-sugar ones, see if you can get a dose-pack of Medrol, a synthetic cortisol often given for various inflammatory conditions. Jump-start with a hydrocortisone shot, if you can. Or, simply get on a trial of 5mg. prednisone daily (equal to the 20mg hydrocortisone Dr. Jefferies prescribed). I slowly tapered-down to zero pred. but it took me 7 years! Not generally accepted treatment by mainstream medicine, and very much opposed by the “natural-healing” folks, but it worked for me and others.
If you can find your fasting blood-sugar level, that’s helpful also. Then again, you can go the whole “endocrinologist” route and get all the hormone tests, hoping for an open-minded stress-hormone CFS-approach.
Ron thanks for sharing this helpful information, i will keep this in mind in my own situation.
Try a simple blood-sugar testing device and if your morning fasting level is abnormally low, you might simply try 5mg of Prednisone/day for two weeks and if you feel markedly improved this protocol is similar to Dr. Jefferies’ (he used the equal strength 20mg. hydrocortison) and hopefully you can gradually taper-off the dose while your stress-hormone levels normalize. In my case, this took 7 years but hopefully yours isn’t going to be this stubborn! Take it first thing in the morning before a good breakfast and watch your blood-sugar levels improve.
I had a Naturopath doctor prescribe Cortef for me. I took it for approximately five months. It helped but I have found each “stage” has taken something more to heal. The biggest help has been a gluten free, whole foods diet. Then I had a hormone specialist balance my hormones and I had a few more symptoms improve. I eliminated my normal lotions and shampoos and replaced them with toxin free substitutes and my dizziness improved. I find it is a work in progress for me. And by the way, I did not receive a diagnosis for CFS, although I have all but two of the symptoms. I have been searching for a diagnosis for three years. I may never get a diagnosis but I will heal if I have anything to do with it – which I do:)
I have had CFS for 14 years and my adrenal hormones were out of balance, I think it was low DHEA and low Aldesterone, I can’t remember exactly which ones at the moment. But I couldn’t get any doctors to go along with DHEA low dose treatment in my area so I was out of luck.. I started to take a product from America (Plexus Slim) which has it’s main ingredient as Alpha Lipoic Acid. It is supposed to help people with diabetes balance their blood sugar and hormones. It also is supposed to help some people with ADD which I have had trouble with. My wife insisted that I give it a try and within 24 hours I noticed an immediate improvement but because I was detoxing so fast I had to take 1/2 the suggested dosage and I have steadily improved in energy and staying power over the last few months. I can actually do ok on one half dose every second day. Alpha Lipoic Acid may do the same thing and I will be trying that out as this other stuff isn’t exactly cheap. Just thought I would add this as it may help those who have adrenal hormone imbalance with their CFS.
BTW, Ron – I am in San Diego!
Just because a condition is more prevalent for women does not suggest that is caused by hormonal issues. Below is an example about Fibromyalgia, many CFS patients suffer from fibro as well
“Some authorities believe that 4% of women and 1.5% of men in America have Fibromyalgia. The NFA (National Fibromyalgia Association) gives a conservative estimate of six million sufferers. Women are far more likely to be diagnosed with the condition than men. This may be because they are built with smaller bones and therefore have smaller tolerances in the areas that cause Fibromyalgia. This leaves them much more susceptible. In addition they participate in all of the same sports and drive all of the same motor vehicles as men, and are subject to the same traumas. Logically, then, in any accident they would be likely to experience more severe damage to the skeletal structure.” Dr. Matt Lanum dc
I don’t understand all the denial about hormones issues affecting more women than men. Maybe CFS is somehow linked to wearing makeup? Or dresses?
As Dr. William Jefferies pointed out in his medical text,
“Safe Uses of Cortisol,” the anti-inflammatory/anti auto-immune benefits of cortisol (Hydrocortisone) were first discovered by accident when it was found that some womens’ arthritis improved during their pregnancies and it was found to be due to naturally-elevated cortisol levels. This led to the first pharmaceutical use of HC in the forties.
Also correlation is not causation. The theory of structural issues causing CFS would suggest that women are more affected because of a smaller more fragile frame. But again correlation is not causation.
I don’t understand all the denial about hormones issues affecting more women than men. Maybe CFS is somehow linked to wearing makeup? Or dresses?
As Dr. William Jefferies pointed out in his medical text,
“Safe Uses of Cortisol,” the anti-inflammatory/anti auto-immune benefits of cortisol (Hydrocortisone) were first discovered by accident when it was found that some womens’ arthritis improved during their pregnancies and it was found to be due to naturally-elevated cortisol levels. This led to the first pharmaceutical use of HC in the forties.
Regarding sleep, this article recommended patients make sure and get 7-9 hours of sleep . . . . easy to say, impossible to do when our stress-hormones are out of whack, namely, low-cortisol and runaway adrenaline. Also, normal cortisol-levels are needed for normal serotonin, so important for sleep. I personally experienced years of a resting heart-rate over 100, racing-heart being not exactly a restful experience.
Conversely, deep sleep is needed for our bodies to produce adequate cortisol. Plus, adequate cortisol is needed to main-
tain blood-sugar levels, and when that drops below normal, more adrenaline is produced, leading to more racing heart-
beat, anxiety, and less sleep!
Just to review from “CFS” back in the day . . . . .
It always had a definite onset, along with typical causes,
such as; virus, unusual stress/trauma, or combination.
It was much more likely to affect women (about 3-1),
lending credence to a hormone-connection.
Many CFS symptoms mimic those of mild-cortisol deficiency,
as well as “non-reactive” hypoglycemia.
Cortisol, our body’s natural “stress”-hormone, has anti-
inflammatory, anti-auto-immune effects, and is essential
for maintaining normal blood-sugar levels.
Cortisol plays a balancing role with our other major stress-
hormone, epinephrine (adrenaline).
Cortisol (Hydrocortisone), has been found to be deficient in
CFS, and physiologic doses has been also found to be helpful
in its treatment. Both the medical establishment and “natural”
health-practitioners have traditionally been opposed to the use of long-term cortisol supplemention, even in small doses
which mimic our body’s own production of this amazing hormone, which is necessary for life.
i’ve been doing an antifungal protocol for about two months now, and for the first time in several years my CFS is improving. so too is my mood, my digestion, and a variety of other conditions. here is a blog post i put together about the first few weeks:
http://gettinghealthiernow.wordpress.com/2014/09/19/lufenuron-healing-pots-anxiety-introversion/
there is no single cause for CFS in my opinion, but fungal overgrowth is a clear problem for many who have taken antibiotics or inherited damaged gut flora from a mother who did. we suffer further from antibiotics in the food supply and chlorinated water.
fluoroquinolones, especially, like cipro and levaquin, they wipe out the barrier bacteria that keep candida from leaving the gut and going systemic. they destroy our sinus microbiota, which leads to fungal sinusitis. this alone can cause huge fatigue.
i’ve seen evidence it’s made worse when people adopt a ketogenic diet, or a VLC diet, in an attempt to starve out yeast/fungi. this has been my own experience. chris kresser has written some great articles on the dangers of being too low carb, as has paul jaminet. for one thing, it seems candida loves ketones, and too few carbs can cause a deficiency of protective mucus in the gut.
so in addition to my aggressive antifungal protocol, i’ve been making sure i’m a glucose-burner, by eating white rice and potatoes in modest amounts, and this has helped on quite a few levels.
good luck to us all suffering with CFS. i am not “well” yet, but after the last few weeks, i do think i can get there. don’t let anyone tell you there’s no cure! 🙂
Thank you Terry for the link. I have POTS, which is just a variation of dysautonomia, and I believe CFS is another variation. POTS and CFS share many symptoms .
hi, Sam — they do have a lot of overlap, CFS and POTS. another angle on gut ecology and CFS has been the impact of fecal transplants, aka FMT.
http://forums.phoenixrising.me/index.php?threads/fecal-transplant-study-58-70-response-rate.20430/
i am pretty sure the reason these remission rates in the study above weren’t higher is because of limits in the study. those of us who have done FMT ourselves know it can take months of treatments before the new bacteria penetrate existing biofilms and set up shop in their new home.
CFS has literally hundreds of symptoms. CFS is definitely not POTS. CFS is not a type of POTS either. Many people with CFS have fibromyalgia also.
Severe MS, Chronic Lyme, GWS, Fibromyalgia and CFS have almost the same overlapping symptoms. They can be difficult to tell apart.
POTS is actually dysautonomia with neverending ever changing symptoms with no rhyme or reason. While I demonstrated “classic” POTS symptoms during tilt table test, not everything was so classic about it. I passed out in a normatensive state, meaning my blood pressure did not drop. It was not investigated further. Hundreds of research hours while unable to work or even live /vs. Exist/ my life brought me to the conclusion that I have dysautonomia. And I do have CFS. At times the only thing that is alive in my body is breath.
Ah, I didn’t understand about POTS. Back in the day,
listings of our CFS-symptoms would often include “postural hypotension” which I think is similar. This was
one of my minor issues, compared to the others!
Here’s the cortisol-HPA connection once again, as low
cortisol doesn’t enable our adrenaline receptors to function properly. My first-hand experience relating to this came when an epinephrene (adrenaline) injection given for asthma had no affect at all. I found out later, this was due to my low cortisol levels.
Evidently, adrenaline plays a large role in regulating blood-pressure, heartrate, etc.. It plays such a balancing act with the the other main stress hormone produced by our adrenal cortex, cortisol.
Terry,I finished reading your blog and found it quite interesting. I was diagnosed with POTS, not CFS, but the symptoms such as anxiety, agarophobia, unexplained tension of body and mind, stuffed head, oh my, exactly what I have on top of the POTS symptoms. How do I know if I have Candida? I have not taken antibiotics in years. I blamed gut fermentation and associated trapped gas and severe pains in my back, between shoulder blades on H.Pylori. Despite the healthiest diet my morning tongue is heavily coated.
i’ve been doing an antifungal protocol for about two months now, and for the first time in several years my CFS is improving. so too is my mood, my digestion, and a variety of other conditions.
2014/09/19/lufenuron-healing-pots-anxiety-introversion/
there is no single cause for CFS in my opinion, but fungal overgrowth is a clear problem for many who have taken antibiotics or inherited damaged gut flora from a mother who did. fluoroquinolones, especially, like cipro and levaquin, they wipe out the barrier bacteria that keep candida from leaving the gut and going systemic. they destroy sinus microbiota, which leads to fungal sinusitis. this alone can cause huge fatigue.
it’s made worse when people adopt a ketogenic diet, in an attempt to starve out yeast/fungi. chris kresser has written some great articles on the dangers of being too low carb, as has paul jaminet. for one thing, candida loves ketones, and too few carbs can cause a deficiency of protective mucus in the gut.
so in addition to my aggressive antifungal protocol, i’ve been making sure i’m a glucose-burner, by eating white rice and potatoes in modest amounts, and this has helped on quite a few levels.
good luck to us all suffering with CFS. i am not “well” yet, but after the last few weeks, i do think i can get there. don’t let anyone tell you there’s no cure! 🙂
Try coconut oil
I urge all “true-CFS” sufferers to check their fasting blood-
sugar level first thing in the morning, as “non-reactive”
hypoglycemia can be a big part of the disease, as well as
being a link to “mild cortisol deficiency.” If you really and
truly have CFS, as it used to be defined, do yourself a favor
and follow the late endocrinologist Jefferies’ advice for patients with “unexplained chronic fatigue” as it used to be known. Find a doctor who will give you a hydrocortisone injection and a prescription for methylprednisolone dose-
pack, and see how you feel after a few days. This was my
“accidental cure” exactly 20 years ago, which I maintained with very low doses of synthetic cortisol and tapered down
for several years. This is a departure from Jefferies’ regimen, but worked amazingly for me. I don’t want any part of all the weird arguments, natural remedies, delusions, medical controversies, etc., just consider it, as you have nothing to
lose, folks.
About 40 years ago I speculated a few things. The first was depression. That was a dead end. The second was hypoglycemia. That was a dead end.
On the other hand, you really need to experiment with things.
Well, everyone’s different, and who knows if one person’s
CFS is the same as another. No, no more experimenting for me, thanks. I’m celebrating 20 years since accidentally finding my cortisol-cure and Dr. Jefferies.
I vowed to share my good fortune, and maybe it will help
someone. Who knows what your particular medical issues are? good luck!
Prednisone nearly killed me while my mysterios health problems were investigated. It almost never happens, but it happened to me.
Sam, like you say, that almost never happens!
I’m curious as to what triggered your health issues?
I wish I knew what had triggered the deterioration of my health. My first few visits to doctors ended up like that- with the way you look, 15 years younger my age, with your healthy organic diet, with your perfect weight, the envy of so many, you can’ t possibly be sick. Take anxiety pills.