If you’re into alternative ways of treating fibromyalgia, Dr. Roger Murphree’s second Fibromyalgia Summit from May 16th-22nd might be the ticket. Murphree is a longtime fibromyalgia (FM) doctor and author of the well-reviewed Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome, and Treating and Beating Anxiety and Depression With Orthomolecular Medicine. Murphree isn’t a slave to dogma and is willing to look outside well-trod channels to find help for his patients. With almost 50 presentations this year, Murphree appears to be casting his net a bit wider.
The focus, of course, is on natural ways to heal. Dr. Ginerva Liptan MD, the author of “The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor“, and a person with FM herself, knows from experience the limits of pain drugs. Her “Rest-Repair-Rebalance-Reduce” protocol seeks to calm the overactive stress response and return the patient to health.
Jacob Teitelbaum, the author of the encyclopedia of ME/CFS and FM treatments, “From Fatigued to Fantastic! Fourth Edition: A Clinically Proven Program to Regain Vibrant Health and Overcome Chronic Fatigue”, has been doing this for a long time”. A curious (in the best sense of the word) doctor, Teitelbaum is one of the few alternative health doctors to actually engage in clinical trials, and just published a study on the use of a ginseng formulation in ME/CFS. Teitelbaum will talk on a topic near and dear to my heart and health – getting consistently good, restorative sleep. Right now I would be happy to get good, restorative sleep once or twice a week.
Speaking of sleep, one of Dr. Murphree’s 4 “Jumpstart Protocol” talks is on getting deep, refreshing sleep, and four talks in the Summit focus on sleep. Murphree’s three other protocol talks are on optimal nutrition, healing the gut, and replenishing your stress coping glands.
In one of my favorite parts of the Summit – and one, which appears so far as I can tell, unique to his Summits – Dr. Murphree also talks with several of his patients about their unique journeys. Nobody has a lock on how to treat FM or ME/CFS, and Dr. Murphree readily admits there are some patients he just can’t help (he’s still looking for ways), but he can help many to reach healthier and higher-quality lives.
I was glad to see a presentation on a painful bladder condition called interstitial cystitis is on tap this year, as studies have shown that gynecological issues are greatly increased in ME/CFS/FM, and interstitial cystitis is poorly diagnosed.
Speaking of hormonal issues, alternative health-minded doctors often try to treat things like pain, depression, sleep and gut issues naturally, but the situation changes when it comes to hormones. Alternative health doctors are often much more forward-leaning when it comes to using hormones than traditional MDs. They tend to do a lot more testing and seem to have a more sophisticated view overall of the role hormones play in our health. They present a rich, if still quite controversial, treatment arena. Five talks focus on the hormones in this Summit.
The role stress – and our jacked-up fight or flight systems – play in the fatigue, sleep, gut, and cognitive problems we experience is getting ever more attention. Brain imaging studies showing problems in the stress-driving limbic system and its regulator, the prefrontal cortex, seem to routinely come out, and many people are turning – some successfully – to mind/body techniques for help. Four talks in the Summit focus on this field of health.
Other talks focus on the gut (3), mycotoxins and mold (2), viruses (2), and the mitochondria (1). I will be talking about fibromyalgia, long COVID, and upcoming treatment possibilities.
The Fibromyalgia Summit works like all the online Summits do: you can register for free and watch all the presentations on the day they’re presented, or you can buy the package and download the talks and watch them at your leisure.
Simply registering gives you access to several talks as well as ebooks on Gut Health Remedies, Treating and Beating Adrenal Stress, and Deep Restorative Sleep.
You can register for the May Summit and/or buy the package here. Please note that Health Rising is an affiliate, and if you buy the package, Health Rising will benefit.
will you be reporting on the outcomes Cort… After another night of only 1 hour of sleep.. even then broken, this comes at a perfect time. I have not slept an entire night for over 40 years and alternate between pain, getting up to wee at leat 6..7 times a night, or just general not being able to sleep being my nightly cycle. I lie here reading and reading this with tears pouring down my face lost in the cycle of no energy and yet still with that gem of hope that “tonight will be different…” or that this new protocol, treatment, or device will make a difference after spending I don’t know how many thousands and thousands of dollars in chasing hope….. too exhausted to give any attention to listening to speakers on a summit…. I’m sorry this is so dark but seeing this came just at a very low point where I really feel at the bottom. I can feel my cognitive health declining and know I will need to leave my career (teaching) as I just don’t have the energy and focus to be my best anymore……
I feel you. This looks exhausting. And I have to say the talk in the intro video about “overcoming” symptoms is such a red flag.
Nerida,
Hang in there. This stuff is going to get sorted out in the next couple of years. You wouldn’t wish long-Covid on anyone, but the research it catalyses will make the difference in the end. I have no idea how you have kept teaching given what you have been through for four decades. That makes any notion of what people generally call endurance or resilience look like a joke. I imagine that if given the opportunity to properly function again, you will live the best of lives. Good luck.
I think that’s great advice for anyone who’s really down in the dumps. It’s impossible to predict the future but it strains credibility that real advances won’t be made in these diseases over the next couple of years. When those depressing thoughts come up – and we all have them – try and keep in mind the thought that the future is looking a lot brighter.
Thanks Cort. for the article. Just getting dx’d again at 60 with Hunner’s IC, it was like something hit and run my bladder. Ack!!! Last time I had to have that procedure I was 17 and they cauterized my bladder back then. What a way to be a Teen! At 17 they only called it cystitis /cauterization, 43 years ago. At least I had the hospital/doc records to give my uro doc. Somehow I think that was an important thing to do, and hoping he’s into research.
Trying the Prelief now but don’t think it’s the only answer in this muddled puzzle. Still think the stomach is involved. enzymes, other stuff…..genetics! One big “muddy soup” of genetic anomalies!
I wonder if they’ll make a low dose of the Uribel. That was great stuff. I only took for 3 days after my procedure, but it got rid of all of my FM pain, 3 days of pain free. That was a miracle to me! Isn’t that sad??? That a miracle to us is to be pain free?
Sigh…………I pray they find answers soon. I feel they are closing in…..hopefully finding more answers than causing more questions….
Thanks Lono… I think it is that positive belief in “something will get better” that drives me on…. Last night after a particularly bad spell finishing with 3 days of no sleep at all, I resorted to a sleeping tablet…. Great to actually feel that my body does have the capacity to be knocked out…(sometimes I wonder) but also frustration as I know it can happen.. no pain at all all night!!! And only up 3 times to wee!!! Bonus!
Sorry you’re having such a difficult time Nerida. I think many of us have tried many things without much relief. On the other hand, many do find some help. I would never suggest to anyone that a cure is likely – but some help hopefully yes for a good number of us.
I may report on some of them. There are an abundance of things to report on right now and I think this is just the beginning – a good sign, for sure :). It’s getter harder to pick and choose and I ay start doing shorter blogs in an attempt to keep up.
Sleep is sooo critical, though. I do have two blogs coming up on sleep – one with a doctor who specialized in sleep in ME/CFS/FM patients for many years and another on sleep technique which certainly didn’t cure her sleep problems but did help them.
Very much looking forward to your articles on sleep. 6+ hours makes the difference between managing a chronic disorder by lifestyle & being to downright sick to manage at all.
Thanks for your good work. Like your idea on shorter blogs to cover more topics.
Hi Cort. I am not clear how much this summit applies to ME/CFS and wondered if you know?
I tend to think that much of what applies to fibromyalgia has usefulness for ME/CFS. Most of these practitioners probably treat both. If this was an ME/CFS summit I think we might see more emphasis on the mitochondria and energy production. Other than that and the increased pain issues in FM most of the other issues are similar.
Thank you, Cort…
thanks Cort, yes l think the ability to keep hopeful seems to be the common denominator for most on this page…Without it, what else can you do? l am as many have expressed just grateful for all you do here and knowing that someone has taken the time to read through and analyse in a way my brain won’t allow anymore, really, is a godsend.So again, thank you..
Thanks :). Not that I wonder every now and then if it wouldn’t have helped not to do so much work, but overall I’m very, very lucky that I’m able to do something that has such resonance me and pays the bills as well. I don’t know where I’d be without it.
I get you. I knocked the getting up to pee up to 9 times a night by no histamine diet..no salicylates…and trying to heal leaky gut..used mainly glutamine powder. There are huge amounts of histamines in lovely herbal teas..coffee.. regular tea..tropical fruit..healthy stuff.
Pain at night reduced from no gluten sugar and only non processed food .This takes determination . I used breathing techniques to calm nervous system dumped all caffeine totally..And as sleep aid.. on nights when that didn’t work amitryptiline.
Am still ill but sleep better . Hope you find a way.
I use a counselor to off load to..someone I can talk freely to without judgment. It really helps. Getting support for long term debilitating ill health of any type is important..Won’t cure you but any way to relieve the stress of chronic illness helps.
🥰
I taught for about thirty years with fibromyalgia. I got through by sheer determination. The only medication I take is amitryptoline which used to help more with sleep than it does today. I still have nights with little to no sleep, but at least I am not expected to teach all day since I am now retired. Since the current medications have limited impact, I would try to take some of the over the counter alternatives suggested on this blog. You may find them helpful. Also, there is no shame in retiring. If you love to teach, there are many opportunities to volunteer in retirement that do not carry the responsibility and personal endurance it takes to teach full-time.
You are not alone. We’re all “different” yet share similar stories and experiences. It may be helpful to “accept” what is (currently), and if possible, live this pattern or routine while still being open to adjustments and changes. What didn’t work months or weeks ago, may work now, or some new medication or OTC supplement may help. I can certainly identify with you. I try to replicate the times I get more than 3-4 hours of straight sleep, but for me, it doesn’t work. Several weeks ago, I had 6.5 hours of sleep for the 1st time in years, and felt incredibly hopeful-lol, unfortunately, hasn’t occurred again..but am optimistic and always open to ways of maximizing both rest and sleep. Please be patient; answers and assistance await us, and we will receive restorative sleep, on a continuous basis. Best wishes and virtual hugs.
Have you been tested for sleep apnea?
I have had CFS for 44 years and had insomnia too until I started taking Mimosa Pudica seed. I passed something in my bowel movement (maybe a parasite) and since than I have been sleeping much better.
Have you had a sleep study done? Your symptoms align with what I understand about sleep apnea, even the need to get up to pee frequently. Even if you have had a sleep study done, I suggest that you dig deeper into this, perhaps with a repeat sleep study. I have been down this road and am now sleeping soundly all night long with CPAP.
Thanks for the suggestion. have had a couple of sleep studies done and unfortunately, neither showed sleep apnea. I was hoping it would!
I was diagnosed with severe sleep apnea in 2006, something like 110 apneas per hour when all required in Canada for CPAP prescription is 30ish. Another sleep study a few years ago found my apneas in the 50s but despite that I still do NOT get restful sleep.
I am 100% compliant with my CPAP prescription. I always have been, even for naps. I have tried every restful sleep trick in the book but still find my body rules when I sleep and how much I sleep, or not. I know significant pain is a trigger but I also when I push myself to stay awake! I feel like I’m sleeping my life away and often joke I sleep more than my cat but sadly that’s really the case. I have some definite cycles of sleep ranging from can’t stay awake, to can’t stay asleep, to can’t stay awake OR asleep at the same time. I’m in a can’t stay awake state now, not more than a few hours at a time.
Anyhow, I was diagnosed with Fibromyalgia in 2011 and am currently on Cymbalta, Lyrica (the only two drugs in Canada approved/recommended for Fibromyalgia), and am on a very high dose of hydromorphone (dilauded) (12 hour) and more for breakthrough pain. Naproxen for inflammation and baclofen (muscle relaxer) for cramps. I would consider myself to have very high pain 24/7 but also feel my pain is at least well managed, rather, masked by the opioids.
But I do not get restful sleep. Rarely do I sleep more than 3-4 hours at a time and as I also have T2 diabetes I am often up for trips to the bathroom. I haven’t had restful sleep for much, much prior to 2006’s sleep apnea diagnosis or 100% compliance with a CPAP machine. I think it’s better since then, but certainly not enough that I get restful sleep. Just FYI and feedback on sleep/sleep apnea and lack of restful sleep.
Wow! This is great, finally good news about Fibromyalgia.
I’ve corresponded with Cort before in reference to COVID & this awful brain fog. I am 84 yrs. old have been fighting FM/ME/CFS all my life & although I am elderly maybe I’ll be free from pains/aches, etc. while I’m still alive. I am buying the package because with my brain fog & sleeping habits I’d never remember what was said or forget to watch it. Prayers for those giving us hope & prayers for all of us still suffering. May God Bless All Of Us!
Con respecto a la apena del sueño un reciente estudio de la Universidad de Granada (España) ha llegado a la conclusión de que no sólo se puede mejorar si no curar la apnea obstructiva del sueño.
https://www.google.com/amp/s/sevilla.abc.es/andalucia/granada/sevi-apnea-sueno-tiene-cura-cientificos-granada-encuentran-solucion-elimina-como-enfermedad-cronica-202204291957_noticia_amp.html
Cort, this is Kay & I ordered the $169.00 program which is all I can afford. When I got to the end they had all kinds of books that would probably be great, but I’m on a fixed income. I could not find a place to comment so I’m writing to you. Sorry, to involve you but I also do not want them to send me more information. Perhaps I will find a place to unsubscribe. With this brain fog I don’t read much, so what I purchased will be enough for me to handle. Thank you for your cooperation.
PS. All this technical jargon makes my anxiety & stress hit the ceiling.
I know how hard it is to function without having regular sleep but I have found a couple of things that have helped me. Firstly, I have the head of my bed raised by about 8” which I have done with some old books but bricks work well if you have them. This helps to cut down the number of times that I get up in the night to ‘pee’. I used to be up 3-4 times a night but now I’m rarely up. Secondly, I use cannabis to help me sleep and many friends are also using it for improving sleep. I have researched it over the past few years and now take Indica based balanced CBD:THC oil drops. There are also gummy Jelly ‘ zzz – bombs’ that many of my friends take to help with sleeping. They are very effective with no side effects as long as you build up your dose very slowly to get your body used to it. Edible cannabis takes a while to work so you need to take it about an hour or two before you need it. I sleep through the night most nights and was hardly sleeping at all before. I have a damaged ANS from chemo and radiation treatments, chronic fatigue, chronic pain from a cancer tumour that wrapped around my spine, central sleep apnea, fibrotic lungs, and more that means I have to sit up to sleep. This all makes sleeping very difficult so without cannabis I can’t sleep! If I can help anyone with their cannabis journey let me know.
Hi Sue,
Kind of you to offer your knowledge. I don’t know anything about cannabis products/ usage. I’d appreciate your recommendation to a newcomer re what path/products/ protocol to follow for sleep. Thanks very much.
Cort, have you looked into/reported on psychobiotics. Heard about it on Dave Asprey’s Human Upgrade podcast. It’s a probiotic approach to address gut-brain connection to improve cognition, mood, anxiety, etc?
I’m pretty convinced my yet-unresolved gut issues were a precursor to my FM, which evolved into ME/CFS, so anything gut gets my attention.
I like the idea! There is certainly a connection between the gut and the brain. I’m trying fermented foods right now.
will you comment on these cort? i could not even watch 5 minites, to severe…thank you!!!
The only thing I can suggest is to buy the package really. That’s the only way to watch them at your leisure.
This is to “ItsJustMe”
IC is a terrible problem…. Check out Ruth Kris,NSN,APRN
She had suffered with an extremely severe case of IC for years.
She has a practice totally devoted to the problem and has solutions. She is slowly building a network of practitioners around the country and internationally who are using her approach. She could be very helpful to you. Check out her website !
I am so tired of fibromyalgia labeled patients being sold on redicing atress. I have already taken the pill of stress reduction so long in so many forms. It has taken so much of my money and time. And tou can never show you have done so enough enough enough. Let’s blame the victim some more and charge them to boot. Harmless, right?
Stress reduction is no different from trying Lyrica or amitriptyline or low dose naltrexone or cannabis – the results are the same: it helps some people and not others.
I don’t know how to get around the “blame” issue. In my mind, it’s not a big issue – stress reduction is something to try and if it works it works and if it doesn’t it doesn’t. Certainly, no one is suggesting that it a) works for everyone or b) when it works that it will eliminate all pain. Instead, I think it mostly helps it around the edges.
Honestly, I don’t think that anyone REALLY knows what to do about fibromyalgia. Its a really tough disease to treat and I think just about everyone agrees we really, really could use better treatment options.
The science is marching forward and several clinical trials are underway this year which could help. May it be so!
I can’t even begin to describe the level of hell that is my sleep quality for the last 7 years with severe ME/CFS. However, question: isn’t unrefreshing or nonrestorative sleep a hallmark feature of ME/CFS and one of the diagnostic criteria? How then would it be possible to get restorative sleep if sleep dysfunction is a component of this illness? That doesn’t make much sense. Anyone who gets restorative sleep must not have ME/CFS then, right?
Another interesting EBV/HHV study:
https://insight.jci.org/articles/view/158193
It has nothing to do with sleep but i wanted to show this study
Thanks Gijs. Always good to see work from the Ariza-Marshall team. 🙂
What was the gist of it please ? Highlighting the connection ? as couldn’t really understand it …
Thanks everyone…. the common denominator is that really, it is different for everyone. I have had several sleep studies, they find very mild sleep apnea, but as they voiced, not enough to make a difference. I take several over the counter products, have also tried cannibas through a doctor, have a gluten and dairy free diet and have gone right into gut health which thankfully is no longer a problem, and yes, I have an adjustable bed so on different nights, find it helpful to have me head higher but other nights, particularly when my body is restless and my legs are sore, I find it helpful to have my legs up high ( like putting them up a wall…. However as many with this condition know, the pain makes you need to move often and I mostly find sleeping on my stomach more helpful ( not for the neck though!) What a great group this is. It really is helpful just to hear everyone’s story and approach…
One thing helped me Noticebly with the pain issues and unable to sleep ,in the first yrs of my CFS
1st yr of it i was pretty much perma in bed 24/7 ….having a shower was a major acheivement and i was chugging thru up to 8 panadol a day ..the prescribed pain meds
talking my doctor in to starting me on an SSRI (Nortryptylene 25 m/g LOW DOSE)
and taken at CORRECT time of the day made HUGE improvements for me
I take it 5 hours BEFORE going to bed so 5-6 pmish
(so many ppl ive talked to here in NZ who get on SSRIs and stop taking them because mid afternoon theyre falling asleep/dozey all say the same thing ,they were told to take it in the morning )
If ive had an overworked day (ie helping brother Gib his house etc etc) and am feeling it by dinner time ill take an extra half tablet of the nortrypt .
If i dont do this on those overworked days im in the dark on the sofa a few days suffering…. if i take it im mostly back to my normal (say 50 percent of healthy normal 😛 )
Another couple things i do is Always go for my walk by 8 am each day
Getting that 10-30 mins of daylight in to the eyes to reset body clock each day really helps
and lastly the few days a month now when i cant fall to sleep ,i just turn tv on a bit more and relax with it Stressing about not being able to sleep ,makes it worse
Fermented grated Carrots and Ginger is a good one Cort
super easy to make …goes well on lots of things ie wraps and easily adjustable
ie add in diced Jalepenos etc
Also dont forget the benefits of Applecider Vinegar each day either straight diluted or add to smoothies etc
very beneficial for the Gut ….for Diabettes management ….and one of the simplest things to make
chopped apples water and sugar and a couple weeks time in a jar
Just watched a couple of interviews with sleep expert and neurologist Dr. Stasha Gominak here’s a link to an older video https://youtu.be/74F22bjBmqE
Much of what she says resonates with stuff we play around with in ME, B vit, vit D but it is interesting to hear what she has put together. In a newer video she talks about acetylcholine. Anyway all things we talk about here but perhaps a nugget of truth that might pull somethings together.
Thanks!