“It comes down to the simple fact that I do not have enough energy to sustain my recovery. I am not sure that everyone in the CFS is like me, maybe I’m an outlier or just have a unique presentation of the condition. In any case I am at my breaking point. I hope that the future will hold some effective treatments for these conditions.” Darden
Darden was a singer, piano player and teacher and composer.
Last August, I just happened to glance down at my phone as I was driving through Idaho. Darden had emailed…but no, it was Mike, her husband. After a baffling and devastating relapse brought on by a seemingly innocuous treatment, Darden had ended her long battle with ME/CFS. She left behind her husband, two daughters, a grandson and her brothers.
No one could have predicted it would have come to this just 8 months earlier.
I pulled over and got in touch with my partner, who burst into tears. We’d stayed at Darden and Mike’s beautiful house on Bainbridge Island and camped on their land two summers ago. We’d witnessed a colt being born, heard Darden play piano and sing, met the infamous “Ned Pepper” – an appropriately named rambunctious puppy who couldn’t stay still – and had generally been overwhelmed by their hospitality.
A Long, Long Battle
It had been a long battle, indeed, for Darden. She first became ill over 45 years ago, in 1973. Like many others, she’d pushed through as best she could, completing her college education, working in a part-time career as a piano teacher and musician, and becoming a mother. When she was well enough, she gave piano lessons to young people and directed the concert series “First Sundays at the Commons” (www.firstsundaysconcerts.org).
When we saw her, Darden, was dealing with her ME/CFS issues in the way she had for decades – researching, trying to think her way through them, and thanks to her very, very supportive husband – Mike – trying new things. At one point, though, talking to her on the stairs, we caught a glimpse of what a strange nervous system she had: her teeth had started chattering.
But Darden, as always, was managing. She been through two really rough spots over the years – both involving an inability to sleep – but had gotten past them and was doing better. She had a lovely house, a wonderful family and her supportive husband. To her surprise, she’d even made it through her daughter’s wedding without issue.
Healthwise, things had been slowly looking up, as well. Her longtime nutritional balancing program seemed to be working, although, just prior to her big crash, things had gone off the rails a bit. She wasn’t nearly well but she was better.
In late November 2018, she reported:
“My sleep is the best it has been in 25 years and my digestion is close to normal. I no longer feel light-headed when I get up after lying down or when climbing stairs or hills. Clinical signs of improvement include increased blood pressure (was low), normal blood sugar (was low), normal TSH (was very low despite normal amounts of T4 & T3 and no symptoms of hyperthyroidism, now in normal range with no change in thyroid replacement)..I still have low energy but I feel very relaxed as opposed to feeling stressed as I did in the past.”
Indeed, a hair analysis test done in September showed an improvement in adrenal function, an increase of toxic metals that were being mobilized, and increased levels of calcium and magnesium – all of which were expected as part of the detoxification process.
As time when on, though, a familiar pattern began to assert itself. The same nutritional rebalancing program which had gone so well for nine months was leaving her more, rather than less, reactive – to the point where she couldn’t take the supplements anymore. In retrospect, she recognized she’d experienced similar symptoms during a more rapid detoxification program. Detoxification is a tricky matter and she had been careful and slow, but later she wondered if she should have stopped the program sooner.
It’s possible, though, Darden was simply once again, have been simply bumping up against her nemesis: the paradoxical inability of her body to tolerate treatments that helped her.
Then she tried a seemingly innocuous treatment – bee venom therapy – which had no effect at first, but which appears to have destabilized her nervous system to the extent that her big bugaboo was back – an inability to sleep.
Something very strange was happening. Instead of her usual low pulse, her pulse was now elevated. Bizarrely, about half an hour after falling asleep she would wake up with her pulse racing and her body agitated instead of relaxed. She’d encountered this bizarre reaction after eating something wrong or after a big day, before but it had always been temporary.
Now, it was happening frequently and was keeping her up for hours. Even eating – which had been a problem in the past but which she was so very careful about – was putting her nervous system into overdrive as well.
Over the last 8 months of her life, Darden became less and less able to sleep. She became so exhausted that she wondered if it would be possible to use anesthesia to induce a coma-like state to get her body to rest.
In the end, she found that everything she tried, no matter how initially positive, eventually resulted in a state of extreme nervous system agitation. This strange problem had been like a demon stalking her. She would open one door, and find relief for a time, only to have it eventually catch up with her. It was as if her body couldn’t tolerate wellness. She would have to stop what she was doing and wait for her system to calm down.
Except this time her system wasn’t calming down.
To Sleep
Sleep had always been Darden’s weak spot. She’d worked on getting better sleep for decades. Nobody could figure out what was going on. During one sleep study, she woke up 11 times, and as she did so, her pulse spiked from under 50 BPM (beats per minute) to over 100 BPM. The sleep doctor had never seen anything like it.
In 2009, she reported that:
“The ability to get a good night’s sleep has been an elusive struggle for me for over 25 years and has required incredible patience and perseverance to cope with.”
Her sleep issues could be dramatic and unremitting:
“My sleep was disturbed by periods of intense heat and sweats that woke me up every night around 2:45 am and lasted several hours. Then the periods of heat increased starting around 11:00 pm and lasted most of the night. By 1993 my health was in a crisis due to lack of sleep.”
Yoga – a calming practice if there ever was one – benefited Darden greatly early on. Physically, it kept her in good shape and, of course, helped mentally and emotionally as well. Her ability to maintain a meditative state through her often night sweat-filled nights proved invaluable, yet even yoga over time proved to be agitating, and she had to stop it.
It was as if she had a governor placed on her system which, as soon as her energy began to increase, caused her sleep to deteriorate. The root cause, she thought, was an agitated nervous system, she tried everything she could to calm it down.
“All I have been doing for years is trying to find ways to conserve my energy and not get stimulated by foods, drugs, supplements.”
Giving up alcohol, caffeine, sugar, pain relievers and additives in processed food helped. Stimulants, of course, were completely out but so were pharmaceutical pain relievers, sedatives and, unfortunately, sleep drugs. Darden quickly built up a tolerance to Ambien and could not tolerate Trazodone or Doxepin Elixir at all. In 1997, Dr. Jay Goldstein’s prescription for Neurontin (Gabapentin) prescription actually worked – she was able to sleep for the first time in months – but then within a week, her system adjusted again.
Desperate for sleep, she upped the dose for six weeks, and then suffered from a withdrawal (severe depression, nausea and headaches) she called one of the most harrowing experiences of her life.
After she went through a similar situation with Klonopin (short-term sleep relief), followed by a withdrawal, she gave up on sleep drugs, and, relying on a network of friends and family, toughed out what she called a “hellish nine months” where she slept very little, burned up with heat every night and felt suicidal.
Then, she had a surprising breakthrough. A neurobiofeedback therapist taught her how to us a simple technique called “hand warming” which she felt literally saved her life. The technique involved learning how to raise the temperature of one’s hands enough (95 degrees) to trigger a relaxation response in her cardiovascular system. Using hand warming, she was able to go back to sleep after night sweats woke her 5-10 times every night.
She also enhanced her meditative work using alpha-theta brain wave neurobiofeedback, which sent her into a deep state of relaxation. Her depression lifted and her quality of life improved. Her still disrupted sleep, however, kept taking its toll and she was increasingly exhausted and had to cut back on her yoga practice and decreased her personal commitments.
Then in the fall of 2001, at the onset of menopause, she developed fibromyalgia (FM) which obliterated most of the progress she’d made with sleep. She was now able to sleep only 20 minutes at a time, and her functionality declined further.
With any type of sustained exertion now producing pain and injury, she was forced to give up many of the things that she loved including her yoga practice, walking, gardening, and perhaps worst of all, her music.
Still, she kept trying new things and, over time, a number of them helped. Stabilizing her thyroid functioning with a thyroidectomy (and treating Wilson’s Low Body Temperature Syndrome), improving her breathing through Oral Systemic Balance, treating SIBO (small bacterial overgrowth) and using a unique form of neurofeedback called LENS all provided small wins.
LENS or “Low Energy Neurofeedback Systems”, developed by Len Ochs, is believed to reset dysfunctional brain patterns. LENS helped with Darden’s fatigue, permanently raised her salivary cortisol levels to within normal ranges, and allowed her to occasionally experience nights of deep sleep. Her horrific night sweats dissipated and her sleep improved, but was still usually rocky with multiple (10-15) awakenings a night.
After getting help from LENS, Darden tried NeuroField, a pulsed electromagnetic field therapy, which enhanced her feelings of well-being, emotional stability and energy, but failed to improve her sleep or muscle issues. After an “Energetic Fitness System” machine worked for a time, she bought one, but once again became reactive to it.
Then in 2009 Darden stumbled across cryotherapy. Developed by a Japanese doctor in the 1970’s, whole body cryotherapy, exposes people to extremely cold temperatures (-110 C) for 2-3 minutes. Several FM studies have had positive results and the practice is now regularly used by athletes to further their recoveries.
Darden responded very well – experiencing about a 30% improvement in all her symptoms – and was able to garden for the first time in years. She was encouraged by the fact that her energy levels were not being dramatically increased – something which had resulted in disaster before. She ended up leasing her own cryotherapy chamber, but after 60 sessions, her nervous system agitation reoccurred and she had to stop it.
Another approach designed to improve sleep – the Nikken sleep system (magnets built into a mattress) – left her with more agitated sleep than ever. A similar reaction occurred to Cranial Electrotherapy Stimulation (CES) which uses clip-on electrodes to the ear.
Acupuncture and natural remedies (magnesium, homeopathic remedies, Chinese herbs, valerian, melatonin, GABA, 5HTP and “natural” progesterone) all tended to follow the same dismal pattern – improvements in sleep at first, followed by a steady diminishment of effects and eventually becoming completely useless, if not counter-productive.
An initially good response to a nutritional supplement formula called MAX GXL, which increased the levels of the major antioxidant in the body – glutathione, left Darden again sleeping well for about five nights, but again, faded over time.
The Gist
- After an adventurous start to her life – she met her husband, Mike, in Alaska – Darden came down with ME/CFS/FM in 1973
- She was able get a degree, was a piano teacher, singer and composer and became a mother.
- Sleep was a treacherous issue for Darden throughout her illness and her doctors who could not understand her blood pressure surges, night sweats, etc.
- With her husband Mike providing abundant support Darden was free to try many things and she did. Over the years she tried an amazing assortment of therapies.
- Some helped for a time but Darden’s system seemed to resist wellness. Almost inevitably anything which increased her energy sooner or left her system agitated with her unable to sleep. Even gentle things like yoga would eventually produce this symptom.
- Some of the few things which helped included handwarming – a biofeedback practive, Lens (Low-energy-neurofeedback system), thyroid stabilization, oral systemic balance, SIBO treatment, and breathing exercises
- Darden tried something called nutritional rebalancing which seemed to be working – she was in better shape than she’d been in years. As her old pattern (nervous system agitation), however, began to reassert itself – she tried bee venom therapy which appears to have destabilized her nervous system.
- Now Darden began experiencing dramatic increases in her heart rate that occurred about 30 minutes into her sleep and left her nervous system on edge and agitated.
- For the last 8 months of her life Darden’s life-long sleep issues worsened.
- Studies indicate that sleep deprivation such as Darden experienced is associated with an inability to concentrate, memory loss, increased pain sensitivity, sympathetic nervous system activation, immune destabilization, toxin build up in the brain, increased risk of suicide, depression and more.
- In August of 2019 Darden Burns took her life, leaving behind her husband, Mike and her two daughters.
Then, she found something called Oral Systemic Balance. OSB is an expensive and time-consuming process, developed by a TMJ dentist named Farrand Robson, which employs oral appliances to help patients breathe better and purportedly restore balance to their autonomic nervous system.
In 2013, using EKG and ultrasounds to guide the process, Oral Systemic Balance treatments successfully altered the position of Darden’s tongue, theoretically putting less stress on the autonomic nervous system. The treatment allowed her to regularly experience 2-3 nights of 3-4 hours of deep sleep, and resulted in significant improvement in her health. Breathing exercises developed by “The Optimal Breathing Coach” by Mike White helped as well.
Finding out in 2018 that she had low normal aldosterone levels and hoping to improve her low blood pressure (80 mmHg/40 mmHg lying down), Darden tried a low dose of aldosterone (25 mcg). Aldosterone, remarkably, improved virtually all her symptoms (energy, sleep, muscle recovery and blood pressure) but, after a month, her sleep plummeted again and she had to discontinue it.
Then came an odd success – a simple ginger root supplement (two 550 mg capsules with breakfast and dinner) improved her gut motility and SIBO and helped her sleep. Diamine Oxidase (DAO) (60,000 units or 3 capsules w/meals), an enzyme that breaks down histamine in the gastrointestinal tract, helped her sleep a bit as well.
These were wins which improved her quality of life but often they were small wins: she still spent many nights fruitlessly waiting for sleep to come.
And then came the natural rebalancing effort, the bee venom and the dramatic destabilization of her nervous system – and the horrific decline into the world of little sleep.
The Cost of Poor Sleep
Virtually every part of the body is affected by poor sleep. Studies indicate that Darden probably experienced the following things during the largely sleepless last eight months of her life:
- Her short-term memory and ability to concentrate tanked quite quickly.
- Her ability to learn anything new and retain it
- Her emotional reactivity increased as the fear center in her brain – the amygdala – became hyper-reactive.
- She probably experienced severe mood swings as her emotional lability increased. Studies indicate that her susceptibility to suicide increased.
- Her brain’s ability to remove toxins declined.
- Her fight/flight system became stuck in the “on” position.
- Her risk of coming down with a variety of diseases and conditions including heart disease, cancer, diabetes, high blood pressure, atherosclerosis and weight gain increased.
- Her motor skills (i.e. her ability to move) likely declined.
- Any injuries, strains, etc. took longer to heal.
- Her cellular energy stores declined.
- Her sensitivity to pain increased.
- Her immune system’s ability to fight off pathogens declined as numerous parts of the immune system (T-cells, natural killer cells) took a hit.
- The pro-inflammatory cytokines associated with increased pain, fatigue, etc. increased – during the day following a night of little sleep.
- Her risk for coming down with an allergic or autoimmune disease likely increased.
An Outlier?
Darden wondered during the last couple months of her life if she was an outlier. I believe she was, and she wasn’t. The degree to which her sleep was impacted, her unusual sleep patterns, the heart racing, uncontrolled night sweats, the teeth chattering, the extreme sensitivity to foods, stimulants, and artificial elements all put her on the far edge of sleep impairment in ME/CFS. Her system was profoundly sensitive to anything that might agitate it, and once agitated, it had a great deal of trouble settling down.
The fact that things which calm most people’s systems down in the end agitated her was fascinating but not unheard of. (I’ve experienced something like that many times.) Her system’s proclivity to adjust to and terminate the effectiveness of the vast majority of initially helpful treatments is not unheard of either.
The fact that her sleep problems seemed to originate from some sort of nervous system agitation seems to me to clearly fit within the broad category of ME/CFS symptoms and sleep study results. While Darden’s problems with sleep and nervous system agitation were unusually stark, they seemed to hearken back to issues that many of us experience in thankfully much milder forms.
Conclusion
“I have been very fortunate to have people in my life who are supportive and understanding and to not have to solely support myself financially.” Darden
In the end, Darden felt the burden of not just hers, but also other people’s illnesses weigh on her. Darden’s attempts to get well were never just about her. She recognized she was lucky to have the spouse she did and the resources and the support she had. She devoted so much time on her blog Fibro-Friends to rigorously detailing her treatment successes and failures because she wanted to find a way out for herself and others. The fact that, after all this time and so many attempts, she was failing to pave a way for others, weighed on her.
“I feel like I have let so many people down. I wanted a happy ending to my story. Last summer I had a glimpse of feeling well and it was incredible.” Darden
Darden’s death revealed, as if it needed revealing, just how much of a mystery these diseases are. After an amazingly brief, if you think about it, journey through traditional medicine, she immersed herself in the world of alternative medicine for decades. Most of the time it didn’t help but at times it helped quite a bit. Still, Darden never came close to resolving her illness, and in the end it was an untested, unvalidated treatment which appears to have triggered her final relapse. What this disease and those who have it clearly need is more and more and more research.
Properly assessed, I believe Darden could have taught us so much about the origins of this mysterious disease. In a more receptive and interested world, researchers might have been knocking on her door to study her. Instead, she was left travelling the fringes of medicine on her 4-decade long, but ultimately quixotic, quest for wellness.
Until we stayed at her house, I knew Darden mostly through her blogs – some of which were published on Health Rising. I found out that before she became ill, she was an adventurous young woman who met her future husband on a trek to Alaska! (This was at a time when it wasn’t easy to get to Alaska). I know she had a wonderful family and very supportive husband. I know she loved animals. I know she reveled in music and loved supporting others in appreciating it.
I will chiefly remember Darden, though, for her unflagging commitment to her wellness and the wellness of others – a commitment which led her to turn over every darn rock she could. She picked herself up from the rubble of the last failed treatment and started over again and again and again. I believe one source of her tenacity was because she was devoted to something bigger than herself – she was on her own personal quest to solve this disease for everyone.
Even ten years ago, her list of things which didn’t work was astonishing. They included:
hyperbaric oxygen therapy (31 sessions!), relaxin hormone Therapy, gluten/Cassien free diet, alkaline Water, AtlasProfilax, guaifenesin, acupuncture (Classical Five Element, Japanese & Chinese styles), EMDR, Enhanced External Counterpulsation (EECP) (37 sessions), Nambudripad’s Allergy Elimination Technique (NAET) (1 1/2 year), NeuroModulation Technique (NMT), The Body Restoration Technique (BRT), Feldenkrais training, rolfing, chiropractics, cranial sacral work, Advanced Allergy Therapeutics, anti-candida program, heavy metal detox, neural therapy, bioidentical hormones, sleep drugs, jaw cavitation surgery, cranial electrotherapy stimulation (CES), magnets, earthing, MRS2000 (pulsed electromagnetic field (PEMF) device), HeartMath, ozone therapy, low dose naltrexone, NanoVi, glycine, quercetin, MTHFR support, methylation disorders therapy, amethyst biomat, anabolic steroids, CBD oil. One Human Probiotics treatment course involved monthly trips to Boston – and failed.
She was, like all of us, a pioneer, bushwhacking her way through the remote regions of medicine trying to read the signs of the land, making her way by feel at times, and laying down tracks where few have gone before.
The nature of being a pioneer is that they don’t always make it. They take wrong turns. They get lost in the desert, snowbound in the mountains, they succumb to exposure or thirst. Not making it doesn’t mean they failed, though. Instead, they often leave behind a trail of courage, creativity, and persistence that inspires us to do better – and finish building those paths through the wilderness.
Darden’s last post on her website in May 2019 featured her on piano singing a song that spoke to the uncertainty of the road she was on, and her struggle “to keep the faith”, to keep appreciating the beautiful things in life. (She wrote that the tune was written by Bruce Cockburn, and that she borrowed a couple of lines from his song “Pacing the Cage”. The meaning of her song, though, was entirely different than his .)
Sunset is a weeping angel
Spreading out across the sky
No matter how I see the beauty
The tears and sadness are close by
Sometimes I feel that I’ve lived too long
Days drip slowly by
I set myself to keeping the faith
I’ve proven who I am so many times
The magnetic strip’s worn thin
And each time I meet a challenge
I pull up from some strength within
Hours chatter in high places
Stir up eddies of despair
I set myself to keeping the faith
Sometimes the best map will not guide you
You can’t see what’s round the bend
Sometimes the road leads through dark places
Sometimes the darkness has no end
My aching body is so tired
I wait patiently for rest
And set myself to keeping the faith
I never knew sleep could be trying
I wonder when the pain will end
I live by hope and faith and courage
And blessed comfort found in friends
Its as if my life was written
In the shadows of the day
I set myself to keeping the faith
The shining faces of my children
The melodies of sweet refrains
The beauty of the singing river
The sky, the moon, a tree, a friend
These are the grace filled moments
On which I can depend
And set myself to keeping the faith
Pacific Dawn by John Adams – from Darden’s last post
We can’t predict the future. We may reach the promised land or we may not. The one thing we do have control over, though, is our commitment to keep blazing trails.
I mourn Darden’s passing and how agonizing it must have been, but I will remember her not as a victim but as the courageous and determined woman she was.
- Check out a beautiful remembrance of Darden from one of her Darden’s daughters, Amelia Burns Stewart (on the Tribute Wall page), where Darden’s obituary can also be found.
- Next up – In remembrance of Darden – Health Rising’s Sleep Series begins. See Pt I below.
A remarkable woman. A lovely tribute, Cort.
My Favorite Gibran Good by-
BRIEF WERE MY DAYS AMONG YOU-
I NOW GO WITH THE WIND-
BE NOT DOWN WITH SADNESS
I’M BACK WERE I BEGAN. GOOD BYE BRAVE ONE
Deeply Moving since for many of us a blazing the same trial & Error quest!
Cort after reading this story on Darden over and over and my husband the same. I am wondering if anyone ever rec she use a Cpap machine and sleep on a elevated bed with the head up. I have all the crazy BP issues as she did particularly with the Diastolic and dizzyness and it jumping around. The Cpap with elevation definitely helps me. I hate the crazy thing-but if I don’t use it my heart is racing off the charts when I lie down. It has to be done together. I did have one Sleep special
ist say i did not need the Cpap but another at Emory told me to stay with it and changed the settings. Just wondering if she tried one and if it was with an elevated bed. Took me 6 mo to get the right angle on this. If I would lie down even without it my heart would start racing and I could not sleep. Thank you for the great tribute. It is so sad-she was so brave.
Darden was obviously one of a kind and it is sad that her tenacious dedication to improving her health had such a sad outcome.
The sleep aspect of ME/CFS is so interesting. My daughter, has always had the opposite. At her worst she slept 23.5 hours a day, and we call it the comas phase!
Currently she is awake for 6/24 hours which is a huge improvement. I am thankful that for 18 hours, whist asleep, she is not experiencing the other awful ME symptoms.
I’ve had this mess for over 20 years & I have craved to have the kind that just makes you sleep. Like Darden, extreme problems with sleep have dogged me, like Darden many things that I initially benefit from are only effective temporarily, however,I do have some success at rotating them out so that they will work for me after a break. But sometimes it would feel like heaven to just pass thru this illness in hypersomnia rather than suffer thru it. I realize it is a life devoid of life but it would also be devoid of the pain & suffering that my body craves escape from. That’s to say, hold that dear that she can sleep thru the worst of it.
Vale to a brave woman!
wow. I didn’t know her, but the song posted is just so beautiful and reveals what a beautiful person she was. Sleep is my worst symptom. I related to much of her story. I wish there was more research on the Alpha Delta sleep disorder. Bless this woman.
We’ll be getting much more into sleep in the coming weeks.
Sleep is my worst issue as well. I can’t fall asleep nor stay asleep. It only gets worse and worse. I’ve tried everything. Having this disease is very expensive. Living with the stress of being ill takes a toll on one. No one understands what we all are living with. Very little support. Jokes even made which hurts beyond words can express.
Wendy, Cort, I was so fortunate to have my alpha/Delta waves assessed at a sleep clinic, and repeated while using a CPAP machine. This sleep clinic was part of a Psychiatric Hospital where all aspects of sleep difficulties were assessed at the same time, and this did not happen in the General Hospital.
So much to relate to in her story. A beautiful tribute, Cort! Much love and blessings to her family and all her loved ones.
Wow, I can’t imagine anyone with this condition being able to do 1/10th of what this amazing woman did to get well. It gives testimony to the support a loving husband and understanding friends and family, can give to someone chronically ill. A picture of a battle fought “out of sight” for so much of the time. Thank you for this tribute to a brave woman.
My heart goes out to all who knew and loved her.
A very moving tribute. Thanks Cort!
This is just so sad – what this wonderful woman went through. The mention of her feeling extreme heat reminded me of the Property Brother’s (from TV) brother JD and the “mysterious illness” he battled…
“……..as professionals tried to diagnose his symptoms. Which, by the way, included a hypersensitivity to heat. “Anything over 69-70 degrees, I would suddenly feel like my skin is on fire, I’d start passing out, and I’d be out of commission for sometimes days….”
Wonderful tribute Cort. Condolences to the family.
This is a very beautiful tribute to a woman whose massive illness was only surpassed by her massive endurance, hope and will to fight not only for her and her family but for all of us!
Thanks Darden for what you’ve done for us, been for us, shall keep being for us: hope for a better future bit by bit. Sleep well your final sleep.
I did not know of Darden, but her story moved me.
Like her, refreshing sleep has always been a challenge for me.
Like her, I am forced into a delicate dance between fatigue and nerve agitation that I can never win, as there is no ground left between them.
Like her, I tried everything that I could imagine to have any real possibility of helping (from both mainstream and alternative medicine).
Like her, most things did not help at all or made symptoms worse. Some things helped somewhat, and a few things helped a lot – but nothing helped for very long.
Unlike her, my focus was to keep pounding on the door of mainstream medicine, begging for deeper investigations into the underlying cause(s) of my multi-system symptoms and abnormal test results – with the presumption that understanding cause was essential to effective treatment, and that only Mainstream Clinician/Researchers had access to such in-depth lab tests. For 30+ years I presented paper after paper after paper of summarized research to my Clinicians to present science based suspicions of imbalanced mechanisms or biochemistry that could be implicated in my symptom profile. Each presentation came with a request for testing to either eliminate or confirm each possibility in my personal health challenges. But with rare minor exceptions, such testing was never endeavored.
Unlike Darden, I have only been slowly losing ground for 35 years, but I presume that my prognosis (of intolerable torment) is very similar to hers. I am just few steps behind on the same path. May she (finally) rest in peace, free of the physical and mental anguish that no-one understands.
Good luck Dave! Let’s hope your path is different, Dave, and that we get to the point where people don’t have to undergo what you have had to undergo.
Thank you for posting this story about Darden. Her story breaks my heart. It is a close reflection of my life since 1986. The reason I am thankful that I came across it it’s because over the last year I myself have considered bee venom therapy. Because my story is very close to hers and all of the treatments that she tried, it has been quite some time since I have tried the expense of new treatment. The search becomes so expensive and exhausting. In a sense the hope for a treatment to work is given up. I did come across bee venom therapy over the last couple of years and and I have considered it for myself. I have watched people on social media improve. After reading this I don’t think it’s worth the risk. Thank you
There are no words. We hear you. We are your unknown brothers and sisters. XOX ?
Your account of Darden reads like both an educational quest to conquer ME/CFS and a huge and compassionate tribute to a friend and health warrior. Your words did her right and I hope that she can somehow hear them and know how much you cared for her.
As I read through the list of symptoms I thought to myself, this sounds something like a super version of hyperadreneric POTS. In the Ehlers-Danlos realm, there is a researcher (Dr. Pocinki) who focuses on hyper-POTS causing so many awakenings as to sometimes totally destroy restorative sleep. It is something that is often overlooked in sleep studies. It presents with a kind of out of control autonomic system and frequent spikes in heart rate (and blood pressure and temperature control and even processes like digestion!) which disrupt sleep. That in turn, with menopausal dis-regulation, can cause horrid night sweats which further keeps a person from rest.
A good site to learn about dysautonomia is http://www.dinet.org
I have some kind of mild version of this myself. There ARE possible interventions but none are formally studied and take a very patient practitioner (IF you can find one!) to try small doses of various medications to gently nudge the autonomic system back into a normal pattern. It can be a very long and frustrating process.
I don’t know if this actually was Darden’s issue but surely when one’s life no longer holds joy or promise, and having a body unable to stabilize, could cause the strongest of us to wish for sweet release. I’m sorry help for her did not arrive in time. Thank you for honoring her.
Darden worked so hard to rigorously communicate everything she tried. Dozens of treatments – all posted on her website.
It certainly sounds like that kind of POTS could have been part of her illness. Nost doctors don’t know about that – that’s for sure. Thanks for sharing that.
Heartbreaking and heart lifting all at once. I struggle with sleep also…
CORT SO STRANGE AS MY HUSBAND JUST READ HER STORY AND SAID-“THIS SOUNDS LIKE YOU”? NOT GOOD AS MINE IS UP AND DOWN. I AM GOING TO A NEW IMMUNE SPECIALIST NEXT WEEK AND TAKING HER STORY WITH ME FOR HIM TO READ.. THANK YOU FOR GIVING US THIS STORY. AND FOR ALL Y DO FOR ALL OF US.
Let’s hope not Carol! It’s encouraging that you’re seeing an immune specialist. Let’s hope for the opposite – a turnaround. Good luck!
Thank you Cort for a beautiful tribute. I resonate so profoundly with Darden’s life story (as I’m sure the majority of us do) in facing the challenges of living with MECFS/FM.
I affirm ~ We are all so faith filled & courageous in our endeavours to live a life worth living!
A beautiful song by a beautiful Soul ~ RIP fellow bushwhacker!
i have no words, i am in tears reading her story, thank you cort, beautifully written. sleep is my worst symptom too. i call it the curse of the devil. praying for her beautiful family.
joanie
This line is a keeper: “Sometimes the best map will not guide you”
The blind lead the blind, and we all muddle through the best we can.
Yes we do – striking out on one path and then another, tentatively feeling our way. That is how the real path gets established, though. Without everyone kind of courageously branching out and trying different things – and then communicating what happened – as Darden did so well, the path through the mountains, so to speak, doesn’t get found. Let’s hope the pass opens up sooner rather than later. Till then we are were we are – courageously, determinedly walking!
What an amazing and courageous woman. So very sad that she lost her long battle with this complicated and devastating illness and it’s hard to imagine how she found the strength to carry on fighting all those years. Thank you for your tribute to her Cort and condolences to her supportive family.
After reading this, I want to cry. Truly those of us on this journey have tried everything… and nothing works long term. Sleep is a problem for most of us. Pain is something we deal with constantly. But fatigue is the worst. I feel that no one understands. Why are you always canceling plans with friends and family, not showing up for things, making excuses.
Yeah. I grieve for her family. I grieve for others with this disease. I grieve for myself.
We MUST keep encouraging research.!!!
What I was so left with Darden was the very simple, very basic need for more research. Her case was so difficult that no combination of today’s therapies, no matter how well intended, was going to do it. It was all still scratching the surface. We need research that gets to the bottom of this.
Thanks for your beautiful sharing Cort. She like many of us fought (fight) the good fight with remarkable endurance and tenacity. As a musician and singer as well, it was great to hear her sing and play a song that most of us with this illness can relate to.
Thank you Cort for this wonderful tribute. Thank you Darden for all you’ve tried and shared. Thank you for the very moving song! Thank you Mike for supporting Darden in every way. May Mike and Darden’s family & friends find peace.
Cort, thank you for telling Darden Burns’ story. This illness destroys so many lives in horrific invisible ways. What does inability to sleep look like? No one can see it, but it is torture of the worst kind. She sounds like an amazing woman and I’m so sorry she was unable to get the help she needed!
Her sleep problems sound similar to mine, only 10 times worse. I’ve only recently come to realize (after being hit over the had countless times) that apparently my body doesn’t want to sleep in the middle of the night and that regardless of what I find that helps, it will always return to that baseline (even after treating for high cortisol).
I know Darden would have been thrilled with my sleep because I do get 3 – 4 hours of decent sleep before I awake. I am so sorry the research was not done in time for her. (I’m like her also in that I gave up on conventional medicine years ago, it has nothing to give me.)
I’m hoping that Bhupesh Prusty may come up with some answers for us: https://forums.phoenixrising.me/threads/bhupesh-prusty-we-are-on-a-perfect-path-for-identifying-potential-transferable-factors-in-me-cfs-blood-that-can-cause-mito-dysfunction-gofundme.79048/
Sleep deprivation, of course, is used as a form of torture – it’s such a difficult thing to have to endure.
I, too, have this weird wake up in the early AM kind of thing.
How weird is it when the body – particularly an exhausted body – particularly an utterly exhausted body like Darden’s does not want to sleep. It boggles the mind.
Good luck Bupresh!
This is so my story, I haven’t slept an entire night for 38 years and the birth of my first child. I go through cycles of what I call ok sleep, still waking at least 9/10 times a night and then needing to wee. At the moment it is at least 2 nights a week of no sleep then the other nights I will fall asleep but wake in the middle of the night for a few hours and even then still get up at least hourly. I have also felt at this stage as I have also tried everything and yes, also feel like I am being tortured particularly in the darkest part of the night when the darkest thoughts come. I also feel helpless and really don’t know where to go anymore. You feel so disconnected from society as you lack the energy to do anything!
Dear Cort you never answered my questions I am small town of india.my journey of cfs since 2012 started with intestine infection every relapse weeken my nerve system now I am totally bedridden. My question is simple is paralyzed nerve most ly gut and left leg is it cfs or something else no testing no money can’t eat solid food perhaps very near to death .
Sorry to hear you’re having such difficulties, Subhash! All I can say is that I have not heard that particular problem – paralyzed nerves in gut and left leg – associated with ME/CFS before. Maybe somebody else has
On the other hand ME/CFS certainly starts for some people with a stomach infection. Have you been tested for leaky gut / small intestinal bowel overgrowth? Those might I imagine complicate matters.
Dear Subhash,
You may get something out of reading the book “The Post Polio Paradox”. It is primarily about Post Polio Syndrome, but the author, Richard Bruno, believes that many closely related and far more common enteroviruses (a family of GI viruses to which the virus which causes polio belongs), can cause nearly identical neurological damage (including one-sided paralysis) and long term symptoms (including autonomic nervous system dysfunction), to those brought on by polio.
You may get something out of looking at your condition and treatment and self care from that lens? (He puts great emphasis on the kind of specific and careful self care that nervous systems that have been damaged need.)
In any case, I’m very sorry to hear that you are suffering so deeply.
I have experienced significant ANS dysfunction as a core part of my condition, including extreme GI dysfunction. One of the first things that I find that actually helped me was daily self applied abdominal massage. (First once a day, and working my way up.) I began this as a part of a larger self created program to, essentially, try to provide “manual support” to all of my streams that seemed to have lost central (autonomic) control (most centrally including my breathing and my digestion), as I hoped my brain/CNS could heal, and re-form some of the connections that it appeared to have lost. It has been a very long and difficult process, but I am now much better than I was for many years.
I hope you can work your way to some relief yourself, too.
I loved listening to her song. Keeping up the faith is what keeps me going. In the past, I have tried many of the treatments that she had tried and now I do yoga, gentle weight bearing exercises, healthy eating, reduction of stress, meditation and prayer. I live alone but socialize as often as I am able, but half of my life is resting and I thank God that my sleep pattern is controlled. I have recently written two papers “My seventy Fifth Year and Living with Fibromyalgia as a senior. Hopefully I will get my second book published in 2021. Judging Judi, ten years later. This is my day and it is up to me to make it as good as I can.
I wonder if Darden ever explored treatment for MCAS (mast cell activation syndrome). Lawrence Afrin’s fascinating book on case histories of MCAS (Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity) shows some of the tremendous variety of syndromes caused by this issue.
Mast cells have an incredible number of active substances in them that can cause a wide variation in symptoms. MCAS explains many if the cases that would have medical personnel shaking their heads, such as allergic reactions to steroids. The description of Darden’s symptoms, particularly that she would become sensitized to do many treatments heightened my suspicion for MCAS. Anyone with a similar history (or with ME/CFS) should look into MCAS.
Such a sad ending and my heart goes out to her and her family. I particularly relate to the sleep issues. For 3 years I got no more than 3 hours a night, often less and also broken. It took me a long time to figure out it was magnesium supplements (yes, I tried all flavours) or magnesium within multivitamin supplements/electrolytes. Makes me so angry that so called experts in ME/CFS told me it was essential to take magnesium without knowing it can have this devastating impact. I now won’t touch it and have been sleeping better (although still not great). Makes me wonder if Darden was on magnesium. I am severely traumatised by the insomnia but very thankful that I can at least sleep again. Consulting functional medicine practitioners (and reading the standard books: Myhill, Teitelbaum) has caused me untold damage.
How Darden got through 25 years of horrific insomnia I don’t know. It truly is the most hellish thing and complete psychological torture.
I didn’t know magnesium could have that effect! I thought it was the opposite….Interesting.
Jo, Many people supplement with magnesium for various reasons. Why do you think it caused sleep problems?
Jo, thank you for your comment about magnesium. I also have severe sleep issues, I can last 4 days and nights without sleep. After that time I can sleep 3 hours before an abrupt awakening and the pattern begins again. I take magnesium every night and have added a magnesium powder dissolved in water. I’m going to try not taking either magnesium and checking the labels on all the many costly supplements I take that haven’t helped my sleep, energy or fatigue. It’s worth a try.
Jo- I agree with you on the Magnesium. I have tried all of them and they do not make me sleepy . They make me depressed and it takes days to get it out of my system. I take 1/2 of a 5 mg Valium to go to sleep. Usually if I have my bed adjusted with my head high enough the CPAP machine will do the rest. Mine has moisture also -so that helps. Sometimes you are not getting enough Oxygen. I have an air purifier in my room and I turn it on high to sleep. Yes it looks like NASA. But it does work for me. I also if not sleeping well the night before -take a nap in the late afternoon. Yoga in the am and stretching exercises. Every AM. I also use a warming pad on my back before I go to sleep. I do not sleep with it. I wonder if Darden tried all of these. I also do not eat 4 hours before I go to bed. I do have water.
Magnesium dilates the blood vessels and relaxes muscles, so (for both reasons) it could make symptoms of POTS worse (including adrenaline surges and insomnia). (At least for some people/types.)
Cort, what a beautiful tribute you’ve written for such an incredible woman. You were both fortunate to share the blessing of true friendship.
Thanks, Pat.
A beautiful tribute. Thank you Cort. I am so moved by Darden’s story. Both inspiring and so very sad.
Beautiful song and lovely tribute to your friend. You did right by her.
Thank you for this tribute to Darden, Cort. I am so sorry to learn of her passing. I always appreciated her posts on Planet Thrive. She was a true health warrior.
I find the closer things are to me, the more difficulty I have in collecting my thoughts…
Reading about Darden’s experience I was filled with such a mix of feelings; sadness for all her suffering and her lovely family’s loss, awe at her tremendous creative accomplishments and discoveries and a sense of fear because I can relate to many of her experiences.
My blood pressure and heart/pulse rate shoots up if I eat chocolate (and other things) – the darker the chocolate the higher it goes. I once measured it at 225 (over I don’t know what because I thought my BP machine had broken, so I didn’t bother looking!)
Try telling that to ‘normal’ people or your average health care professional.
From the early autumn of 2016 to the spring of 2019, I was completely overwhelmed by an out-of-control stress response, I couldn’t tolerate most food and my sleep was severely disrupted.
I actually had to largely stop charting my symptoms because I was clearly deteriorating and that just heightened my stress response – a vicious circle.
I was beyond exhausted, couldn’t remember much, think straight etc. However I did manage to halt my decline and slowly reverse it by starting bringing my stress response under some sort of strict (!) personal management – enough to calm my system, to then allow for more restorative sleep.
A year later and I’m generally sleeping well, every night. From skimming the surface, I’m now experiencing the myriad benefits of consistently deeper sleep. I quite often feel really well and have a sustainable level of energy.
I’m still weird but I’m a weird person who functions better and that’s good enough for me.
Darden’s legacy of her detailed experiences of her life on Bainbridge Island, have spoken to me in the South West of Ireland and that’s a real gift for me.
Coincidentally one of my brothers lived on Bainbridge Island too, with his wife and children, for many years. It’s a small world.
I liked your phrase Cort, that you would remember Darden ‘not as a victim but as the courageous and determined woman she was’ and that Darden would leave behind ‘a trail of courage, creativity, and persistence that inspires us to do better…’
I spoke with Darden several years ago and we communicated with emails. I also was a patient of Dr Robson with the Oral Systemic Balance appliances and did well with them and like Darden they stopped working. Almost three years ago I was introduced to Annie Hopper Dynamic Nueral rewiring system, and it worked. Never was able to let her know about this nueralplascisity treatment.
.
Lena, I came across Dan Neuffer, whilst trawling around the internet. I just watched his videos and recovery videos online. It didn’t cost me anything, though he does have his ANS Rewire program and his book CFS Unravelled.
I did read his book but at the time I couldn’t hold on to any information, so I sort of glided right through it and out the other side.
I was only able to keep two thoughts in my head – calm down and get better sleep. I had no idea why that would work and though I knew I was wired and was hardly sleeping properly, I didn’t realise the effect that was having on me.
Over the last year I have slowly progressed to getting more and more continuous, unbroken sleep. I have noticed that the more I am able to come down from being so wired and tired, the more refreshing my sleep becomes and then the less wired and tired I am…
Thank you, Cort, for this tribute to someone who sounds like a truly lovely soul who never stopped doing her best.
I often assure myself that just being and doing those two things, is enough (for each one of us).
Beautiful song, beautiful voice.
I also wanted to add, on the subject of her search through alternative medicine: I find it very helpful, and even personally assuring, to read of another person who (like me) has a lot of inherent hope/faith in the premise of alternative medicine, but who (also like me) did not always produce the clear successes that are expected (often even promised) in those fields.
I must say this: I feel I owe my life and almost all of the recovery I’ve made, to the general ideas generated in those fields of thought. (Along with what I have learned about my more specific conditions through Health Rising.) But, along the way, I have also spent a lot of time feeling like a “failed patient“…even an “uncooperative” and “difficult” patient.
This is not written under the assumption that this is a universal experience for all (or even many) patients, but I have personally found that many fields/practitioners of alternative medicine can have so much faith in themselves, that if you do not recover in the quick smooth way that so many of the books/practitioners suggest will happen (for nearly everyone, with nearly any condition), a person can too easily end up feeling (even sometimes be outright told) that they are doing something wrong: not operating with enough trust, enough faith, or enough willingness to trial and error…that you haven’t removed enough foods from your diet…you need more exotic treatments…more supplements (that you cannot afford)…and when all of that fails (or, you resist for the very safety of your system, or even just your pocketbook)…maybe, then, you just don’t really want to be well at all. (That is perhaps the worst and most damaging of all the common implications that I have met in my own travels).
However, because the primary conversation surrounding the subject of illness is currently dominated by the perspective of Western Medicine, the subject of the advantages and potential pitfalls (including the real dangers and often demoralizing messaging) that can be a part of the darker half of alternative medicine are hardly ever touched on, anywhere. (Other than extremist sites like ”quackwatch” that dismiss the entire fields in one fell swoop.) And the alternative fields seem extremely limited in their own awareness of the potential “holes” in their own paradigms.
Again, I have to say: I have gotten so much out of the information generated by those fields, (and, again, the experiences that I’m listing here are certainly not assumed to be universal). I am truly eternally grateful to them. But most of my own success has come by piecing together the safest parts for myself: I have never been fortunate enough to find a practitioner in flesh and blood that I could trust with my own highly reactive system.
In fact, I have found the practitioners in these fields to be – in particular- often exquisitely unfamiliar with the heightened sensitivity seen in these conditions (ME/CFS, POTS, and others) – including, as Cort points out, the tragic and ironic sensitivity that many of us have to potentially helpful treatments.
And I have found it incredibly frustrating, and even irresponsible, then, to learn (repeatedly) that a part of their core paradigm is to intentionally de-emphasize the importance of understanding and diagnosing specific conditions: meaning Western diagnoses (including things like CFS and POTS). Because then, of course, they would (and do) completely miss the truth that this hyper-sensitivity is a commonly-witnessed pattern among this specific patient population, and, that it is not about a lack of faith, or hope, or dedication of the individual to their recovery.
I would have benefited from learning a long time ago that other patients were having the same difficulties as I was, in putting the theory of those fields safely into practice. (I have felt very alone in my failures, and therefore often even responsible. This seems to be echoed in Darden’s feelings too.) I wish now I had understood that this was one underlying theme of her experience. I would have probably greatly benefited from her wisdom. And, I could have perhaps assured her that her limitations, and her body’s reactions, were not her personal failures.
Your report on her path is assuring me of that about mine, at least.
I will be sure to now go back and read her blog.
Thank you again, Cort, for this report and lovely tribute.
And thank you to Darden for working so bravely on behalf of your own health, and never forgetting all of ours, amidst so much personal suffering.
May we all do our best to carry on your legacy, in whatever way each of us can.
Hear, Hear. Martha I totally agree with your excellent description of the mental abuse that can be delivered by some alternative medicine practitioners. I have thought of writing a book of my experiences emphasizing the outrageousness of their insults. I still pursue more natural and alternative approaches for my health issues but I agree that the blaming the victim that goes on in the alternative health world (just as in conventional medicine and in so many other areas) should not be ignored. And thank you for this wonderful eulogy Cort.
I am so sad. What a tragic loss.
I really appreciated her blog—she was so brave in her self-excitements, and so dedicated. She was obviously sharing in the hoes it would help sometime else. I wrote her before, asking questions about OSB and she was so generous with her hard-earned knowledge.
I am glad you finally are resting, Darden.
Hi Cort,
Thank you for posting this beautiful tribute. I remember speaking with her about you.
I was lucky to be able to spend sometime with her a few weeks before her passing.
Growing up she was always someone I looked up to. So proud to have her as my big sister.
Peter