My Symptoms

These are the symptoms I experience with my chronic illness:

Exhaustion
Constant nasal drip down my throat
Needing to clear my throat constantly
Cough
Headaches
Sore throat
Constant stuffy head-cold feeling
Feeling lousy most of the time, except when distracted
Tension in my body, especially the arms, legs and chest
Tension in my head, like it’s wrapped in a steel band
Jitteryness
An unpleasant buzzing sensation throughout my body
Laboured breathing
Sleep disturbance and Insomnia
Mood swings
Anxiety
Depression
Worry about the future
Lethargy
Worsening of fatigue the day after aerobic activity (Post-Exertional Malaise)
Dropping things a lot
Feeling overwhelmed
Difficulty focusing and sticking to one thing
Sense of desperation
Feeling faint when I stand up, especially in the evenings (Orthostatic intolerance)
Generally feeling like I’ve been hit by a truck, even when I’ve just woken up in the morning

The intensity of the symptoms varies quite a bit, adding to the emotional rollercoaster. They invariably get worse when I don’t rest, up to the point where I can’t function and have to stay in bed. Then they ease off very gradually if I stay in bed resting for extended periods of several days or so.

In November 2018 I had a polysomnograph, also known as a sleep study, and was diagnosed with severe obstructive sleep apnea. I now believe this is the cause of my symptoms and have since then been exploring effective treatments. I encourage anyone suffering from Chronic Fatigue Syndrome, Myalgic Encephalomyelitis or Fibromyalgia to have a sleep study if you haven’t already done so, even if you don’t fit the normal demographic for sleep apnea.

In one study, 42% of a group of patients with CFS who hadn’t had a polysomnograph before (11 out of 26) had obstructive sleep apnea and 58% (15 out of 26) had a diagnosable sleep disorder, which surprised the researchers because the participants were “primarily of normal weight women in their late 30s and early 40s—a group not typically considered at risk for Sleep Apnea/Hypopnea Syndrome.”

34 Comments

Una · January 8, 2022 at 3:20 AM

Hi, have you tried myofunctional exercises? A device called Face Former reduced my sleep apnoea from disabling levels to functional. University College hospital has been useless so far so i have had to treat myself. V disillusioning to see how poor medical treatment can be. Thanks and good luck!

Mladen · February 6, 2022 at 4:27 AM

Where do you find this face former device? Does it do the same thing as vivos? I’m interested in finding more info.

Una · February 6, 2022 at 7:09 AM

Hi,

In UK you can order Faceformer at https://somnishop.co.uk › all-anti-snoring-mouth-guards

More info at
https://faceformer.de/en/faceformer-training-three-steps-to-success-this-is-the-right-way-to-exercise/

I read on a forum that FF was a cheaper version of IQORO, another similar device, invented by a Swedish Dentist. Looks good but about £150 – so three times the price of FF. IQORO is licensed by NICE as medical device, not for sleep apnoeoa but for hiatus hernias. Basically both devices improve the swallowing mechanism.

After having covid, my sleep breathing got worse agian so Im now adding in Breathwork classes. All seem to have terrible websites, hard to find classes! Seems crazy to me that no drs look at HOW we are breathing. So many factors affect breathing from stress to weight to posture to mould and pollution, yet it doesnt seem to feature in any OSA medical approach in UK.

ALso respiratory muscles exercies worth a go

Jonatan Bogren · November 11, 2017 at 5:38 PM

I’m doing something called DNRS by Annie Hopper; another way of retraining. It’s hugely helpful, http://www.retrainingthebrain.com

Graham · November 12, 2017 at 4:03 PM

Thanks Jonatan. One of my coaching clients used DNRS and also found it helpful for breaking negative thought cycles. Glad you’re finding it helpful too!
Cheers, Graham

Celine · February 6, 2021 at 1:08 AM

I had 19 years of Post-Exertional Malaise but i believe it was DOMS because of the lack of oxygen in my tissues from mouth breathing while exercising combined with sleep apnea from childhood and other breathing disorders. This helped me understand it better and the breath download is reasonable cost (i do not know the person who runs this website). Take a Deep Breath and Andrej Tummo are great youtube channels as well with breathing exercises that can help if done long term. A somatic breath therapist helped me directly with biofeedback through a capnograph.

https://recoverybreathing.wordpress.com/

steve lyles · April 26, 2018 at 12:43 AM

Jonaton…….Great that DNRS helped you…….even though my personal opinion is that it is snake oil in this case on a DVD……I do have the Gupta program and I think the meditative practices are of value …..but remember a meditative state isnt going to relax and calm you …..it opens the doors of the subconscious letting out what we hide away…….anxiety could get worse as could all symptoms especially sensitivity…..
cheers
steve

Dana Miller · May 12, 2017 at 2:18 PM

Have you read the books by Sarah Myhill, M. D. (British) and Joseph Tietlebaum, M. D. ?
Both explain and offer ways to cope with and gradually escape the confines of CFS. Also, one of the symptoms of having an overgrowth of the yeast Candida albicans is a constant nasal drip and the cure is eliminating sugar from the diet which is the food source for the yeast. I too have most of your symptoms but have found some improvement by doing yoga, taking certain supplements and trying to have a healthy diet.

Graham · May 12, 2017 at 2:44 PM

I’ve browsed their websites but not read their books. I’ll put ’em on my list! I’m glad to hear you’re making progress.

Nuala · February 23, 2017 at 5:11 AM

Did your symptoms get worse over time. I have a lot of your symptoms. I had surgery last year and I suspect it advanced my symptoms. I have very physical job and I feel it makes it worse. I find I get worse as time goes on. I’m currently doing test with doc and they think it’s vestibular migraine. But this condition makes more sense to me. I’m back at doc next week so I’ll mention it and see what they say.

Graham · February 24, 2017 at 11:29 AM

Hi Nuala,
My symptoms vary somewhat over time. Initially they steadily got worse until a point where they started steadily getting better. On top of that is the push/crash thing that most people with CFS experience. If I exert myself too much, I feel considerably worse the next day. Stay within the energy envelope though, and I seem to gradually improve over time.
I had a friend I met through this blog who suffered from CFS for many years and said that when she was finally diagnosed with atypical migraine and given the right antidepressant, she recovered. We had a falling out so I don’t know how fully recovered she is over time; she’d told me about earlier diagnoses that she also believed in at the time, but didn’t lead to a full recovery.
My next question would be: What’s causing the migraines?
Cheers,
Graham

Steven · January 5, 2017 at 2:24 PM

So I’ve flipped through a lot of the blog and have a few questions. Are the symptoms listed above your current symptoms or the symptoms at your worst? Have you had any recent saliva cortisol tests? Did you ever try any cortisol lowering supplements? Enerphos/seriphos or standard ps, cbd oil, holy basil or relora?

Graham · January 17, 2017 at 9:29 AM

The intensity of my symptoms tend to vary, but this list is pretty consistent. I’m finding that they gradually reduce over time; or perhaps because of all the therapy/yoga/EMDR/exercise I do! I tried some herbal remedies from Mediherb that were supposed to reduce my cortisol, but I doubt they did anything. I’ve never had it checked a second time since the test is kind of expensive and doesn’t get to the bottom of why my cortisol was so high in the first place.

Steven · January 17, 2017 at 10:19 AM

Well we have pretty similar symptoms. I also have high cortisol and am taking supplements to lower it and am making gradual progress. It’s a long hard road, so good luck.

akbar hasware · November 5, 2016 at 5:48 PM

I am suffering from this illness since last 15 years. My work efficiency is getting low day by day. I have had all of the above symptoms.
I was intending to buy the GUPTA PROGRAMME. Please advise me if it is just not a preferred programme to get cured from CFS/FM

Graham · November 7, 2016 at 11:25 AM

I’d need to talk to you to know more about your situation, but I’d recommend you check out Daniel Neuffer’s ANS Rewire program. I haven’t seen the content but I’ve heard great things about it, and it’s newer that The Gupta Programme. Drop me a line if you’d like to talk more 1-on-1 via Skype. Cheers, Graham

akbar hasware · November 7, 2016 at 6:43 PM

First of all thanks a lot for your swift response. I will follow your Advice to explore the AND Rewire Programme. Further, since I am located in Pakistan we need to fix a time for skype at your convenience . My skype ID is Akbar hasware.
Regards.
Akbar

Malcolm Nay · October 3, 2017 at 6:20 PM

Graham, have you had anymore feedback on the ANS rewire program?

Graham · October 8, 2017 at 3:12 PM

No, but Dan Neuffer has just sent me a review copy of his updated book CFS Unravelled. I’ll post a review when I’ve read it. Cheers, Graham

Jim Pitt · December 5, 2016 at 7:18 AM

Your symptoms are my symptoms. Classic adrenal dysfunction with lowered immune response. I am doing Nutritional Balancing with Pam Killeen as coach and Dr Lawrence Wilson, MD. Stress of all kinds leads to excess production of cortisol leading to adrenals not making other hormones properly leading to screwed up electrolytes leading to retention of heavy metals leading to screwed up brain chemistry and fatigue. You have to get the good electrolyte metals back in and the toxic heavy metals out. A long process but worth every minute of it. Wishing us all well.

tom · May 1, 2016 at 9:41 PM

Thanks for sharing , can you give more details about your constant nasal drip down the throat ,runny nose how common is it among cfs patients

Graham · May 2, 2016 at 5:59 PM

I think it’s part of the cold/flu-like symptoms that are a defining feature of CFS. I feel like I have a mild cold all the time, in addition to the headaches & fatigue.

Dana · January 26, 2016 at 8:02 AM

Have you looked up the symptoms of Cushings? I’ve suffered similarities. Turns out to be cushings. You do not have to have all the symptoms but high cortisol seems to be the diagnosing tool.

Graham · January 26, 2016 at 1:37 PM

Thanks for your comment Dana. Yes it does seem to fit; have you found an effective treatment?

Heather · October 2, 2015 at 5:38 AM

Hi Graham – I used to keep a blog about my move to Mexico, and then I moved back to the US. I started getting very ill while I lived in Mexico but I’ve been partially sick most of my life. Until the last 9 days, I feel so much better. But I was doing law of attraction and trying to get better, but I really wasn’t until a few weeks ago. I’m just wondering if you have tried Diatomaceous earth. I’ve tried so many things and I’m so hopeful this is what is going to help me actually get better. My symptoms are listed in my first post.

Graham · October 4, 2015 at 10:33 AM

Hi Heather. Thanks for your comment. I haven’t tried Diatomaceous earth. I’d be interested to hear how you go with it in six months time. Good luck! Cheers, Graham

Ben Monagam · February 29, 2016 at 2:26 PM

Graham;

I’ve tried diatomaceous earth. I bought a 50lb bag about 3 years ago. I’m pretty good about taking a 1/4 of a cup of it daily for periods of time then I get tired of it. It doesn’t help me with energy. I did have odd things come out when I started taking it. Im not quite sure what I had built up in there but it got it all out. I’ve used it as an appetite suppressant. Nothing like a stomach full of earth to make you feel full. It does seem to help teeth to get harder. It does seem to help with my blood pressure and general aches and pains. Oddly enough I felt odd after my last flue vaccination… It seemed to help with that but that’s not very scientific… Maybe it was just time passing. It can make the user very constipated if too much is taken..

Sherrie · September 27, 2015 at 6:31 PM

Graham, have you tried adding magnesium to your diet ..

Graham · September 27, 2015 at 9:54 PM

Yes.

Helen · December 8, 2013 at 4:43 AM

Hey, I had the buzzing thing – I think it was largely due to tension in my diaphragm. I did breathing exercises which involved pushing my diaphragm down as far as possible when breathing in and it went away. Worth a try at least!

Graham · February 19, 2014 at 11:47 AM

Thanks Helen. My Naturopath had me doing a breathing exercise where you inhale diaphramattically (as you describe), then breathe out as slowly as you can maintain without gasping for breath. This increases your blood CO2 level, which switches off your sympathetic nervous system. Result: feel much calmer. I did it continuously for a year whenever I wasn’t engrossed in something else.

Andrew · October 17, 2010 at 11:40 PM

Graham I’m just wondering if you have had sleep problems as one of your symptoms? If not I don’t feel what you have been suffering is CFS. I think you have some sort of chronic infection going on. Look into MORA therapy it might help.

Graham · October 18, 2010 at 9:42 AM

Thanks for your comment Andrew. Yes, sleep problems are one of my most persistent symptoms. Perhaps I didn’t mention it because I’ve had sleep problems as long as I can remember; Chronic Fatigue just made it worse. CFS is a syndrome, not a single definable illness; if you meet the diagnostic criteria, you have it. MORA therapy looks like a placebo treatment dressed up with some pseudo-scientific babble. It may help if you believe in it, which I don’t.

mark · March 31, 2010 at 2:24 PM

My gosh, I have same symptoms plus 10 more gut issues etc.