On this third and last day we’re almost at the, er, summit of the Fibromyalgia Summit. Check out today’s speakers below and click here to go to the Summit.
Today’s presentations are available for free today. To be able to download them and the background information associated with them order the entire summit for $69.
Presenters
Toni Bernhard – the author of three books on how to mindfully manage having a chronic illness, Toni Bernhard will give five tips for handling chronic pain and how to not let unsympathetic family members and friends ruin your day, (or month or year.)
John Dempster – is a Canadian naturopath who will talk on the gut/mental health connection and where the brain fog in FM comes from.
Dr. Ginerva Liptan – a doctor with fibromyalgia, Dr. Liptan has written two books on treating FM. She’ll be speaking on the oh so important subject of hypothyroidism in FM, why the tests most doctors use miss it, and how to diagnose it properly.
Glen Depke – a naturopath, Glen Depke cured a decade long bout with epilepsy using natural health and mindfulness practices. He will be speaking on inflammation and pain, and how to overcome weight issues and reduce the frustration that comes with FM.
Julie Ryan is the popular fibromyalgia “Counting My Spoons” blogger who has used diet, pacing and self-awareness to improve her health. She’ll be talking on how to use diet and pacing to get better.
Robert Hedaya – is a psychiatrist who uses functional medicine protocols in his practice. He will talk about how to use herbs to reduce pain.
Sue Hitzman – after being intractable pain, Sue Hitzman developed the MELT method, a manual, self-treatment method of getting out of pain. A manual therapist and exercise physiologist Sue also wrote “The MELT Method” She’ll be talking on her “breakthrough self-treatment system that reduces chronic pain”.
Dr. Rodger Murphree (MD)– is a doctor and functional medicine specialist, author and public speaker. He will talk about “stress-coping-savings accounts” and how to detox safely.
Cort Johnson – I will be talking about five new drugs that may get approved for FM in the next couple of years, new drugs and therapies being developed to treat chronic pain, and what fibromyalgia needs next.
Chris Cade – Chris Cade helps people to transform mindsets that keep them stuck. He will be talking on how to face and overcome the fear, anxiety, shame and guilt that often comes with a chronic illness.
Adrienne Delwho – this popular fibromyalgia blogger will speak on “Tips for living a dynamic passionate life despite chronic illness.”
Joe Steck – was a prominent businessman until he came down with a debilitating case of fibromyalgia. He will speak on how to have better relationships and how to successfully transition from an active life to a less active one.
Wonderful as this summit will be it is just too much to listen to and take in with our disease. Would love to have seen these talks spaced out over a month.
Good point. The upside of the 3 days is that from my perspective I don’t have to advertise for it, which I don’t really like doing. The downside – it’s a heck of a lot to take particularly for people for FM
I agree. Even more frustrating and exhausting is I have registered but have not been able to access the speakers each time I am taken back to the page to subscribe. I have now subscribed 3 times with no luck and a heap of anxiety!
Darn! Sorry about that Nerida. I have no idea what went wrong but I apologize for the mess and the frustration!
I had the same problem as Nerida – even using different browsers and different PCs and on different days. I was never able to access the Summit.
Darn – sorry about that! I have no idea what happened.
Every talkers subject is useless and uninformative, with the exception of you Cort.
Talking about positive attitude and mindfulness etc is pointless. Get to the point, the science, i.e the upcoming drugs which look to change the FM landscape. Something mindfulness techniques and the rest of that nonsense will never achieve.
I must confess I haven’t heard any of the presentations (lol). They sounded good in theory :). Glad you liked mine…I tried to pack a lot of information into the background materials in particular.
I’ve loved some of the “mindfulness nonsense!” Some days my thoughts are all I have to work with, and I can shift some physical and lots of emotional issues with a short meditation.
Cort, your presentation is one of my favorites. An awful lot of presenters are selling themselves, hoping to draw me to websites selling supplements and downloads. I got some bits of useful information from a few of them. But your talk was nothing but information.
I wouldn’t have heard about this summit if you hadn’t posted here. Thanks.
Sometimes, lots of times, mindfulness is all we have…I wish it was easier! Glad you liked the presentation; information is all I have 🙂
As someone that’s been dealing with extremes of pain since my late teens and also been through the gamut of treatments for conditions concomitant to the CFIDS/FM/?ME finally diagnosed in the early 80’s(hypothyroidism/general endocrine disorders, multiple chemical, food, mold, & environmental sensitivities, spinal canal stenosis, polyarthralgias, DDD, osteoporosis, prolonged recovery from infections, systemic fungal, and more)–it’s critical for me to find a natural safe remedy for dealing with pain and inflammation. My body can no longer tolerate the side effects of the toxins that build up in the tissues from using even tiny doses of popular pharmaceuticals, i.e. I lost fine motor skills, was passing out from sitting or standing positions, pronounced muscle weakness, dangerous hypotension (68/48 lowest recorded), had muscle/nerve tremors such that I could no longer raise a fork to my mouth or drink from a glass, or drive. Abruptly stopping all meds(prescribed by my CFID/FM specialist over 20+ years) resulted in almost immediate relief from the worst symptoms and gradual restoration of my BP. It left me with new peripheral neuropathies and pain from new inflammatory processes however.
Right now I am very encouraged after listening to Dr.ROBERT HEDAYA, from Georgetown University, Maryland in today’s segment on “Herbs for Healing Pain And Inflammation”. His combination approach to healing led him to making an herbal formula for his own pain situation that he tested and finally marketed as “UNFLAME” because it not only relieved his pain/inflammation after two days, but also helped about 70% of his patients. After reading the outstanding reviews on Amazon just now I ordered it and will report back to this community on it’s effectiveness for me. The drawback is it’s affordability.
I have always used herbals if possible and if they are safe though some have had strong side effects for me (either tryptophan or melatonin for sleep). A formula for severe Tinnitus (Ringstop) has been 85-90% effective over the past 18 months when I didn’t think there was any hope. It has to be taken for as directed–2-3 months before relief can be noticed and I must take it daily.
Good luck with that Judy. Herbs are something I really need an expert guidance in so I’ll be looking forward to hearing Dr Hedaya’s talk. I will look up UNFLAME as well.
I see on Amazon Dr. Hedaya gives a guarantee “We are so confident in our product that we offer a 90 day money back guarantee (with return of product)”
What did you use for the tinnitus- its driving me crazy?
Hi Helena,
For Tinnitus I used “RingStop” (lol–that’s the name!) For some people it does nothing but it’s necessary to take it as prescribed for the first 2 months & perhaps 3 months (unless you notice a big improvement prior to that time frame). Mine suddenly dropped down to minimal levels between the 2nd and 3d month.
Take 2 in the morning, 1 at night–and don’t stop that regimen for 2-3 months! Once you have noticed good relief, then drop back to 2 each morning. Some people can go down to one or stay off for awhile, but usually it comes back. I ran out once and by the 3rd day it was back stronger than ever.
It has a large number of antioxidants in it too. I’ve not had any side effects in 18 months and for me that’s good.
It seems to be cheapest on AMZ’N, but it fluctuates between 39 and 51 dollars for 180 gel-caps. I keep it in my Lists, and watch for sudden price drops–usually it’s on weekends but for only 2 days. Good Luck!
There is just so much information to absorb and piece together when it comes to these neuroimmune conditions! Had I known there were so many holistically minded MD’s out there I wouldn’t have spent the last year reading medical studies. On the plus side, perhaps this means I can bring some esoteric factoids to the table. For example, in regards to ‘occult’ hypothyroid symptoms due to immune dysregulation – there’s a very specific mechanism that may be of interest. Reverse T3 is elevated by TGF-beta:
http://lavenderdojo.blogspot.com/2016/05/thyroid-immune-interactions-rt3-and-tgf.html
Thanks Cort for all the work you put into running this fantastic site! I don’t know how you muster the energy!
Thanks Sean, I didn’t know about the TBG-beta Reverse T3 connection…I know TGF-Beta has shown up several times in ME/CFS studies.
Hi, Cort and all – I’ve purchased the Fibro Summit package, though I think I didn’t really need to since I’m on a SS budget, and Health Rising (that’s YOU) covers all these issues with fantastic resources. But, at least I’ll get to see your talk, and all of the others. There’s almost too much info for my CFS/FMS brain. But having access to all the presentations is great, and watching is much easier than trying to read all the bonus items. What I’m REALLY impressed with (going back a few articles) are Dan Neuffer’s web sites and free videos, free book on hope, and I also got his “CFS Unravelled” book on my little Kindle. I’m quite excited about reading and considering all he presents in his book, and then considering whether my procrastinating personality would be able to commit fully to his six-month program. He sure has helped a lot of sick people! All the best, Judith
Thanks Judith! Good luck with the program and please let us know how it goes.
Good luck on getting over that procrastination issue. I know it well:)
Hi Cort,
I was able to hear you and Genevra, whose book I’m reading. She inspires confidence more than anyone else I’ve read in FM, of course has street cred by having the disorder. Hey, was also good to hear your story. You have been dealing with this stuff since the Dark Ages, like me. BTW, whoever had one choose “caregiver or healing” was a most thoughtful person.
Thanks Steve. Those ages were really dark. I guess they’re just a bit lighter now. Dr. Liptan has agreed to do an interview by the way.
Cool. She is a big proponent of myofascial release therapy (MFR) to start, have my first massage appointment next week, not cheap. Also Ginevra’s consult form and getting required blood tests for a consult with her in OR, also not cheap and 6000 mi RT, not fun for fibies. We’ll see. My fantasy nightmare is to fly wtf far to some FM breakthrough guru some day and have them say, “yup, you have fibromyalgia.”
Steve, Wanted to let you know that I had Myofascial Release therapy for over 7 years by two different therapists. The first was with an OT who was a master level in the “John Barnes MFR technique”. That method by far exceeds anything on this planet. It’s beyond anything a medical doctor a medication can do for FM. I could barely walk up my stairs at home–for months. But after one session, albeit very painful at first–I literally pranced up the stairs. She worked deep into the tissue layers, even deep into the abdominals & under the rib cage to release old strictures from past surgeries and a car accident. They can work on the entire body, even internally (and yes it helps many conditions–like TMJ).
I was only with OT 2 months until she had to move unexpectedly. The problem for most of us needing JB-MFR is they are difficult to locate, and also quite expensive. But that’s a reflection on the cost of their training–most courses they take 2 -3 times over to master everything, and it requires continuing ed every year. The OT trained me in self MFR techniques too.
Then I was luck to find a highly trained massage therapist who used the CORE MFR method developed for the English Olympic team in the 80’s or 90’s. She agreed to use some of the John Barne’s techniques too (holding gentle pressure on the muscles and tissues for extended periods of time until “I” felt that the release was complete). The sessions were 90 minutes in order to fully treat most of the areas each time. It’s important that they do not rush you and do not put “pin point” pressure on super tender areas until it begins to soften up a lot. I was pretty much FM pain free by the 5th year and only needed maintenance sessions or treatment of knots/spasms every 2-3 weeks.
After dealing with FM at all levels for 30+ years–I think that should be the mainstream treatment for FM. Sorry for going on about this, I just wish that more people knew about MFR.
Good luck with your treatments ! Judy D.
Congratulations and thanks for sharing Judy 🙂
I’m so grateful for everybody’s sharing. I looked up John Barnes MFR and found an advanced practitioner 10 minutes from my house. I’ve emailed asking for her first available appointment.
I was one who was unable to get into the summit even though I had advance registered. Why is the summit still linked to in your newsletter now that it’s done? Is the information still available or is it advertising for the paid package?
I believe that you can still buy the Summit and get the downloads. The Summit is still listed in the blog feed because it was one of the blogs and I rarely go back and remove stuff. I will check on the summit status and get back to you.
Jeez, length is fine, Judy, I greatly appreciate the detailed post as I need some hope (and help). It also gives me some added hope in Ginerva’s protocols. You are right about scarcity of Barnes folks but I will push the massage therapist, who says she does clinical massage, to focus on his techniques if she can. Tuesday is the my first day. Maybe I will print out your note and show to therapist. It’s an hour session for $90, not cheap as you say, and Ginerva seems to suggest pretty frequent massages but I will not speculate yet. If I could reduce my Tramadol, crummy barely effective med for me and with side effects, to 50 mg a day it would be fantastic. If I could eliminate it…well, it’s almost hard to remember when I didn’t have severe FM now. Will post after ppt.
Ok,
I had an hour MFM with a skilled clinical massage therapist, not Barnes trained but knowledgeable, on Tuesday. Wednesday I felt my usual bad FM leg burning pain and other assorted pain and malaise. Today Ifelt 75% less leg pain and biked three miles, the first time on a bike in three years. I also skipped my AM Tramadol for the first time in a year. I have to assume it was the MRM as I made no other changes. I would have expected a placebo response immediately, not several days later. My pains all came back late in the day and I took the PM med. the massage therapist just texted me with a 7:15 AM opening, awful time for me, but I am going, got to try this experiment. Incidentally, all of the blood tests that Dr. Ginerva Liptan requires for a consult with her came back negative for me, as they have for years…thyroid, ANA, ESR, etc.
I picked out an endocrinologist because Hashimoto’s and type II Diabetes. I have been feeling awful lately. Like a wet string mop trying to move by itself. Yesterday afternoon, I got a call from my neurologist. He said that my thyroid and he faxed the results to my endocrinologist. I did not know that was one of the tests that he gave me. It is evening the next day I haven’t heard anything about the test from endocrinologist. I am thinking of calling the office tomorrow. He has done research on the thyroid. I know that it can fluctuate but I am feeling like I want to lie on the floor. Am I doing the right thing?