An Update on Fibromyalgia
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- Опубликовано: 30 апр 2009
- Fibromyalgia is a mysterious disorder of unknown cause characterized by widespread pain, abnormal pain processing, sleep disturbance, fatigue and often psychological distress. According to the CDC, fibromyalgia affects an estimated 5 million adults. Dr. Sean Mackey, assistant professor of anesthesia at the Stanford University Medical Center, discusses our current understanding of this cryptic disorder: its pathology, diagnosis and treatment.
Honestly, the chronic fatigue is almost as bad as the pain! Last month, I actually was standing leaning against my refrigerator and fell asleep, and slid down the fridge, catching myself as I almost hit the floor. I went to bed, in tears...this was day 4 of fatigue beyond belief. And I had been sleeping pretty good (for a change) at night, that week. It’s so debilitating and depressing.
I had to abandon my whole way of life and basically take to my bed. I pray for some kind of miracle. I am very enlightened by this video. I had no idea this disease was so complex. Thank you
Sounds like narcolepsy or cataplexy
Umfortunately I am too freaking smart for my own good. You can’t convince me not to believe what I feel, so I can’t pretend I am not in pain. I can’t make my brain go with the ‘how much pain you feel is how you think about it’ stuff. It hurts. It keeps hurting. I can be reading the best book in the world, and I still hurt while I am laughing and enjoying myself.
Wow Kathy…unfortunately, you just don’t get it….and you never will.
Agreed
Yep if you’re in pain for 30 years, u find a new normal. Thing is , I don’t want this life. It effects every aspect of one s life. Everyone
@@dp1275 Hopefully humanity will soon find some relief for long term pain. I hope you find that relief soon. 😢❤
The brain is much more powerful than you think
This is the by far the best information I've heard on Fibromyalgia. I actually feel like there could be some hope. I've been ill with Fibro and all it's ugly following disorders for 18 years. I am definitely looking into the study. I am on Disability and my life has been ruined due to these DISEASES. Thank you for a glimpse of hope and for your dedication to the research of this bizarre group of diseases. I am so grateful. Even if it isn't approved in my lifetime, there is always the other generations which will benefit.
A lot of information there. Hoping either a cure or a viable solution gets us all out of bed, reduced or removed pain and our lives back. Fibromyalgia ruins every aspect of our lives and more need to be done to understand it. And those doctors even to this day still say its in your head and you need to get out and exercise should lose their license. Those few words can cause SO MUCH HARM! After two different doctor in two different years told me those words I nearly killed myself. How at that time could I exercise if I couldn't get from my bed to the bathroom???`???
Fibromyalgia Sucks makes me laugh when a doctor says do more exercises lol yeh right how the hell can you exercise whilst in agony even if you get a good day okay are do some gentle exercises ok not to bad next day even more pain Carnt win I’ve had this for 5 years about to try 3rd lot of medication cause there shit even made me put on 3&half stone
@Kevin G , thanks Kevin, I do have all of these things also , I just started taking ibuprofen again after 35 years this week and my hands are more swollen, floating in blow up pool all week which was no help ,this last few days, I could have sawed my arms feet and hands, though don't have the strength, the pain is relentless, I hope you, and everyone suffering from this, has a break from the pain, that was my prayer today to give me a break from it , I hope you had a wonderful New Year,cheers from Australia
@@animeart1703 hi, I hope you get a break from the pain soon,
Fibromyalgia Sucks hey there. Your right fibro does suck . First off I’m so super sorry that you got two stupid doctors and I praise God that you’re still hanging on . YOU ARE NOT ALONE!! Unfortunately I wish I had a cure all for you but I know all to well how annoying it is when someone tells me what I should do . I believe that there WILL one day be a cure ,until then all we can do is be there for each other and I pray .soft hugs and prayers to you . God bless.
My prayers and thoughts to all , and those suffering from fibromyalgia , I have been bed ridden all of 2018, I don't believe the chemtrails are helping me either, since they've bumped it up a few notches, the spraying here is bad and I believe it's been making my inflammation 10 times worse, take care
Doctor, you have a special place in heaven. Your compassion, care, concern and empathy for people in pain is so evident in your presentation. Thank you. This gives me hope for humanity as well as hope for getting out of chronic pain one day. May the creator bless you and all the healers in this world.❤
Times for update....it's 2019
It's now 23.
Fibromyalgia - the other F word
True story
I love you... me biolgician fighting fibo for 10 years.I would assign 3 FFF ....s to it all.
FIBRO MOM you got that right!
Touche'
Hello my name is Nyesha Brooks and I live in the United States, Philadelphia Pennsylvania. I wrote a book called Aaliyah's Invisible Illness. It centers around a teen girl who goes through the twist and turn of living with a sickness. I have a chronic illness known as Fibromyalgia and that why I wrote the book. I'm hoping to spread the Awareness about Invisible Illness and give people hope. My book is available on Amazon for an affordable price. Thankyou
Don't give up! Don't give up. I have been misdiagnosed since 2008, first with possible lupus, then rheumatoid arthritis.. those were devastating enough. After all these years, my doc finally sat me down and explained I have fibromyalgia, CFS and osteoarthritis. There are good days-weeks.. and bad days-weeks.. sometimes months. I understand your feelings of isolation, depression and have thought so many times of just ending it just to make it stop. We have to fight together. Don't give up.
There are multiple methods for resolving fibromyalgia I’ve seen for myself, that actually work in many, and some in most cases and they are explained below. It often has multiple aspects to it requiring more than one method for healing. MD’s very rarely have the skill set required unless they are a functional medicine doctor, who often do along w natural Paths experienced w fibromyalgia & some mainstream medical doctors who have learned so called traditional methods are useless for most chronic conditions and have found what actually works. I’ve had fibromyalgia for 25 years, and have been aggressively looking for a root cure. I’ve been studying natural medicine since hearing of fibromyalgia being cured by it 15 years ago, and my mother was able to cure hers w just what I learned in the first 6months. Since then I worked 5 years in a residency clinic for doctors of natural medicine & saw them cure people no one else could. I’ve been an exceptionally tough case, and I was t one of them, but I had a dozen doctors who taught & trained new docs I learned from and help guide my own research and 100s of things I’ve tried. There’s been cures out there a long time but they don’t get publicity. There’s limited money in cures & so much in have an expensive issue for decades. Dr. Daniel Dantini has a 70% cure rate w fairly heavy rounds of viral meds & food sensitivity identification and avoidance. He reversed his arthritis after an elimination diet showed which foods he was sensitive too, after needing a double knee replacement at 35, and has his b4 and after xrays from another doctor. Almost everyone w fibromyalgia has food sensitivities causes by candida and/or 1 of 4 viruses still active in our symptoms. I had 2 friends who worked w him or years and saw him cure 100s if not ,1000s. His book explains how to get his protocols handled w ur own doctor, if they’re no open minded enough u can find one who is. I didn’t respond to the protocol but asked to try Armour thyroid & 25 years of energy issues disappeared in less than an hour & pain was down 80% within 6 weeks...until they changed “a binder” & it completely stopped working. My doctors had all said my thyroid was perfect for 25 years as well, but a chiropractor had found a few years early this was not true. Over half of thyroid issues are undiagnosed & their #s are calculated into what is considered normal. Everyone of the tens of thousands w fibromyalgia Dr. Tenenbaum has worked w had substantial candida overgrowth, usually systemic, which actually causes full fibromyalgia symptoms in itself. Unfortunately, most mainstream MDs deny systematic candida is possible outside of the ICU, while functional medicine & other holistic doctors know it’s extremely common, especially in those of us w chronic issues and treat 1000’s of cases. I recently had not choice but to reluctantly take antibiotics, which is almost always what causes candida overgrowth in the first place and had a drastic increase in candida and the same drastic increase in fatigue joint pain brain fog and muscle pain, related to activity. I’ve tried almost everything including pharmaceuticals, which are actually less effective than natural methods of reduction and very toxic and hard on the system I t’s a fairly long process that must be taken slow and first and gradually increased. Biofilm must be dealt with or much of it will survive understand shield and come back as soon as it’s not being hit w antifungals(Candex is the best supplement for this according to many experts in this area who don’t sell), multiple antifungal herbs are almost always required(Purely Holistic has a really good one 120 tabs $20, probiotics are a must along w a low carb high fat diet, free of yeast containing foods like cheese bread most vinegars & especially alcohol. PB8 is the best probiotic for the $ and often less than $10 for a bottle of 120, but the best method is usually to make ur own own Kefir Milk or water kefir with real kefir grains. Some natural-Paths recommend going slow at first since it has trillions of probiotics in a serving, and anything that combats candida can cause die off symptoms from the extra toxins released when they are killed. Saccharomyces Boulardii, is a Probiotic that actually eats candida & quite a few pathogenic bacteria including C-diff. Usually even beneficial yeasts aren’t a good idea w serious candida but this one is recommended by the best specialists out there for candida SIBO and as a great probiotic to take during antibiotics, if they absolutely must be taken. Out of everything I’ve tried to combat Candida die off, which can be absolutely brutal in the beginning if u don’t start very slow, Thorne Research - Molybdenum Glycinate 1mg capsules are by far better than anything else I’ve tried. Highly recommend at least getting a bottle to have on hand, and they’re only $11 on Amazon. Just taking 1 w antifungals is often the difference between no symptoms and feeling rough, but when I’ve had really bad detox symptoms, taking 4 on an empty stomach eliminated 80-90% of them in 15 min! That, staying very well hydrated, going slow, and taking less antifungals when not taking them w food have been the main keys to not getting sick.
Also look into upper cervical chiropractic. This cures my migraines and most of 25 years of back pain. Didn’t even have any real issues w my neck, but neither do most others w fibro & one doctor found 90% of his patients had up cervical issues that were causing many of there symptoms. I didn’t think I had issues w this or any of the other things that turned out to be at the root of serious fibromyalgia arthritis migraine etc symptoms & many of u probably don’t either. It’s case is a little different but a VERY high percentage
Of us have all of these issues that most doctors will tell u they’ve never heard of them, or they don’t really exist if they have. I’ve learned to follow the evidence of those who are getting cured, or curing others, or at least getting huge improvements in symptoms who just covering them up.
This is all the info most will need to be able to look into it for themselves and get better.
I’ve also found many incredibly useful supplements for fibro related symptoms like reducing arthritis joint pain allergies over 90%, after experimenting w hundreds that were useless or only had limited results. Let me know if u have questions or found anything else w profound results
You should have ur own channel. You can help so many people. You have a wealth of information that will help. I so believe in all u have said. Where should one start ?
@@jeannettegrondin7190 ‘
Geez Brockt…..have you ever given any thought to writing a book?!?!
Wonderful way to accept fibromyalgia. I never thought of it in this way. This should be of great help to all of us who suffer. Thank you for such wonderful information.
thank you for this video, yesterday my son and I watched it together for the first time together and it made him understand more of what I am going through....I do believe a new door has been opened.....
Has anyone tried the LDN that the Dr. is discussing here? Did it help with fatigue? I have had Fibro for 28 years and I had to quit work several years ago. It is so bad that I can go for days with barely being able to get out of bed enough to take a shower, make a sandwich and lie back down. I used to be so active. I was a counselor for domestic violence victims. I was a victim in my first marriage and this lead to my Fibro. My pain is so bad, that I wrap up in heating pads and electric blankets, do deep breathing, relaxation techniques, self good talk, all the things i used to work with my clients as a counselor. I so want my life back. Just being able to even go to church now would be great. I got so weak and the pain so severe that I had to quit driving. I am totally homebound now. I seldom go out, unless it is to a doctor. It just takes too much energy to get ready. Also, does anyone else have problems with their family members or friends, simply not believeing that Fibro is real. I have that problem for real. They simply feel it can't be real. I am afraid it is all too real. thanks everyone have a great night. I do thank God each day that I am still here to feel pain, as my first husband tortued me so badly the last night I was with him, that I nearly died. God delivered me and my children, when he died. My second husband was a wonderful Christian man and he died in 08 from a kidney transplant. But I am so fortunate to have three great kids and six grandkids.
I hope you are better now. Domestic violence is very hard on people. I have fibromyalgia to and I had to quit working because of the pain. I believe that God can heal anything. So I will pray 🙏 for you. I was married to someone who tried to hurt me too. God saved me from all of that. God bless you.
My heart goes out to you. It's really hard to be happy, or even think clearly, when you're in pain. I would urge you to return to your doctor, or find a new doctor, and ask for help managing your pain. In a case like yours, some adequate pain relief might make a huge difference. Everything looks horrible when you're in pain-- if you get some help with the pain, you might find things are looking better.
I clicked on this video just to comment that a fibromyalgia video update is over an hour long?.
Any chance of doing an update on the update? This is still one of the best educational videos for new patients & their friends & family that is available despite its age now & it would be wonderful to find out what progress has been made since 2009
My friend has this. She goes through regular cycles of just being out of it, and sleeps, sleeps, sleeps. My other friend has Lyme disease. There are some real similarities.
I'll have to start studying fibro. It really sucks.
Very informative and well done! Thank you Dr Mackey for sharing your time and experience with this. It is so nice to feel validated and your long term brings me much hope! Thank you again!
Best information about fibromyalgia. I recommend this video to all my fibromyalgia patients.
The best video on this subject so far. Thank you! My symptoms feel relief just listening to this lecture.
Such a great video! Thanks.
Thank you and bless you for not giving up on us!!!!!
If you have Fibromyalgia, there are many ways you can improve your lifestyle and your symptoms. Jenny Prokopy shares her ideas for increasing your activity level, bettering your diet, and discovering new relaxation techniques.
Check out: fibromyalgia.cf
Absolutely awesome lecture on Fibromyalgia! Thank you for such great, accurate info!
Awesome, finally someone who is onto this !🙏👍🏻
Robert, women give birth.we are not weak with pain.
+Eva Madrigal women can tolerate pain much better than most men. I have been under doctors care for fibro since 1994, and now my newest enemies have come along called HLA-B27, R.A and degenitive bone disease. I am also allergic or have life threatening side effects from all the fybro drugs from lyricia to savalla. I quit drinking 2 years ago, smoking 6 years ago, changed my diet, do B-12 shots monthly and all my Doctors as of last week told me they are pretty much at a place to give up. I still move as much as i can, i've been disabled since 2009, and being a man and having this is very hard to live with. I feel for you all. But any of you guys out there, never under estamate how much pain a woman can take. I would gladly transfer my daily pain to any man for just 10 mins to give you an idea of what we go through everyday. It would crush you in minutes. and I don't use any pain meds. They haven't found any that work for me. So the next time you think about telling someone to buck up, walk it off, make sure you know everything there is to know about the one you may be insulting!
Eva Madrigal 8
This is fantastic. Thank you so much.
I loved this Fibromyalgia video by Stanford's Dr. Mackey MD, PhD, covering pain, genetic predisposition, disease mechanism, and most importantly, treatment. - Rich
Fibromyalgia started after I had 10 hours bowel surgery. Up until then I was a senior nurse doing 12 hour shifts, fit and healthy until I was 44 and had that operation. I spent 4 years trying to get my energy back... I never did.. now 8 years later I'm riddled with pain, frightening muscle spasms and chronic fatigue it has destroyed my life. THIS ILLNESS IS LIFE CHANGING.
I was diagnosed with fibromyalgia in the early 90s. I have pain all over my body. I’m 73 and I’m nearing the wheelchair era. The doctors here in my small town doesn’t know enough about it.
I remarried 2 years ago and it’s gotten worse.
Do you know that hundreds of doctors in Dallas Tx have excluded it from their practice!!!
This video has helped me so much.
I do appreciate your dedication as I am sure all fibro patients do.
Excellent Video
What a great reasercher. Thankyou for this. You can do a lot in medicine when you have an open mind.
I'm so glad I watched this video. I was diagnosed with fibromyalgia two years ago. While I have read quite a bit on it, this video touched on things I had not seen associated with the disease before. I'm now more convinced than ever that my doctor made the right diagnosis! Thanks for putting this on the internet!!
Best summary of FM I have ever heard!! I will be trying LDN soon!
Good medical discussion.
This is the best explanation I have seen for Fibromyalgia. I was dx in 1998. Please keep researching it is so hard to get doctor's to listen and believe what we are going thru sometimes. I have added this to my blog where I advocate for understanding and research. Once you have a cause we will defitely be able to receive more complete treatment to keep control of ourselves
Great video and gave me some options to consider. God bless you n yours.
Great Video
Good video, did not cover all the symptoms, but generally a good video. I have had the condition since 2002 and do not take any medication due to severe reactions to drugs.
This lecture hits on a lot of points for me. When he mentioned "clothes" I finally broke down in tears. I thought I was crazy becasue sometimes my bra makes the muscle between my rib cage flare up by at least 1". My accupunturist freaked out when she first saw me like that.
Same thing with the bra. I would keep pulling at it thinking it was too tight. Then I had 3 big spinal fusions and couldn’t wear a bra. I was amazed that I kept wanting to pull at the under bra line. Then I thought....I must have a phobia. 🤔 Hahaha....got the answer re; the bra. All of my clothes have to be loose, including socks. Stress is a big factor too. 😖
This person and his talk were definitely much more informed than what the talk in Michigan was done ...
And have every test on earth run...you probably/hopefully don't have anything that shows up wrong! Well, now that I am older I have loads of things showing up wrong!
So far this doctor is awesome!!! I hope he continues to be understanding!
Amazing talk. I don't have firomyalgia but I do have postherpetic neuralgia and so have chronic pain. Not sure if there is a cross over but I really enjoyed this talk - I felt like it was the pain I feel that you were talking about. Thanks
Does anyone else have difficulty driving my nerves feel hyper sensitive and feel over sensitive to too much sound activity and feel cars are moving faster then than they actually are seem like they are getting to close or not stopping soon enough. Am I the only person that experiences this?
I have had 5 car accidents. You do the math.... I don't drive anymore.
Everything seems to be too loud, bright or fast
It seemed to me the cars were coming back at me, I would slam on my brakes. Therapy helped a lot after my 6 car pile up on the interstate. I was the second car. I stopped but the cars behind me rammed me into the car in front of me. My truck was totaled. 25 years later its pain and depression. Ive just had a mastectomy ( hell to add that kind of pain on overactive nerves). My teeth chatter uncontrollably because if the pain. I was clueless about the suffering attached to breast cancer. Found out the same day I learned I had cancer that my thyroid is attacking itself. I pray as the doctors discover links they will find a cure. Thank you for working to help us. This isnt living, Its a slow death. If we can all write about what were going through maybe it will help the doctors understand more.
You are not the only one. I have had this for 21 years. I keep a current drivers license because on the rare occasion I have a "good" spell sometimes I feel like I can drive. Most of the last 15 years I have stopped driving completely because I feel like I am a danger behind the wheel. I have all the things you described to the point it just overwhelms my system and I can't keep up with what is going on around me. I don't know how telling you this can help except to know you are not alone.
Janet Scofield janet! So sorry! Mine is 25 years in so I get you. There are simple therapies that will help you get behind the wheel again. It’s bad enough that our bodies are prison but add not being able to go places when you are able to is insult to injury. You can even look up simple things you can do online, on RUclips. There are tapping therapies you can do with a friend or you can put your hands stretched above your head and just open and close your hands while you relive the moment. It somehow re-signals the brain and takes it from going into panic mode to a feeling of calm. Don’t spend another day not being able to get behind the wheel. You have suffered enough. I just wonder, are you a Christian? I feel like Christians really face a lot of tribulations because we strive to be closer to God. While those who aren’t seeking to better the relationship with Christ have a pretty smooth ride. Satan has no reason to attack those that are already on their way to hell. But those of us that care a lot and value our salvation we are the ones he wants. Sorry that may be too much information. Anyway I’ll say a prayer for you.:)
Great .. Thank you 🤗
Has anyone here tried the keto diet ?. Cutting out sugar and all carbs that breakdown to sugar has an incredible anti inflammatory effect. I’ve been doing it for 8 months now. The biggest difference is how I feel when I first wake up. I don’t feel like a piece of crap . That’s a huge improvement. What you put in your body makes a difference.
Importantísimo entender en que consiste esta dolencia, tanto para el paciente como para quienes lo rodean, pues realmente es un drama sufrir de dolor permanente, el cual te incapacita en el momento menos esperado a lo que suma la incomprensión de quienes te rodean, sea tu familia, amistades, jefes y compañeros de trabajo.
This was an incredible informative presentation that all should see. Very well done I hope this guy knows how much this is appreciated. The crazy thing is this was 11 freaking years ago and I have never seen anything come close. I am going to research this guy and follow him imagine what he knows today! The only part that I don’t like is the medication part as I have had such bad experiences with meds that it has affected my life more with taking and trying things. Many just cover up the symptoms. I wish he would mention diet such as gluten sugar carb free. Meditation and yoga. However Writing this only half way through the video. Amazing video. All doctors should see this video and stop thinking it’s in patients head. Fight on Warriors !
2009- 2018 any new news we are still suffering :(
There’s been cures out there a long time but they don’t get publicity. There’s limited money in cures & so much in have an expensive issue for decades. Dr. Daniel Dantini has a 70% cure rate w fairly heavy rounds of viral meds & food sensitivity identification and avoidance. He reversed his arthritis after an elimination diet showed which foods he was sensitive too, after needing a double knee replacement at 35, and has his b4 and after xrays from another doctor. Almost everyone w fibromyalgia has food sensitivities causes by candida and/or 1 of 4 viruses still active in our symptoms. I had 2 friends who worked w him or years and saw him cure 100s if not ,1000s. His book explains how to get his protocols handled w ur own doctor, if they’re no open minded enough u can find one who is. I didn’t respond to the protocol but asked to try Armour thyroid & 25 years of energy issues disappeared in less than an hour & pain was down 80% within 6 weeks...until they changed “a binder” & it completely stopped working. My doctors had all said my thyroid was perfect for 25 years as well, but a chiropractor had found a few years early this was not true. Over half of thyroid issues are undiagnosed & their #s are calculated into what is considered normal. Everyone of the tens of thousands w fibromyalgia Dr. Tenenbaum has worked w had substantial candida overgrowth, usually systemic, which actually causes full fibromyalgia symptoms in itself. Unfortunately, most mainstream MDs deny systematic candida is possible outside of the ICU, while functional medicine & other holistic doctors know it’s extremely common, especially in those of us w chronic issues and treat 1000’s of cases. I recently had not choice but to reluctantly take antibiotics, which is almost always what causes candida overgrowth in the first place and had a drastic increase in candida and the same drastic increase in fatigue joint pain brain fog and muscle pain, related to activity. I’ve tried almost everything including pharmaceuticals, which are actually less effective than natural methods of reduction and very toxic and hard on the system I t’s a fairly long process that must be taken slow and first and gradually increased. Biofilm must be dealt with or much of it will survive understand shield and come back as soon as it’s not being hit w antifungals(Candex is the best supplement for this according to many experts in this area who don’t sell), multiple antifungal herbs are almost always required(Purely Holistic has a really good one 120 tabs $20, probiotics are a must along w a low carb high fat diet, free of yeast containing foods like cheese bread most vinegars & especially alcohol. PB8 is the best probiotic for the $ and often less than $10 for a bottle of 120, but the best method is usually to make ur own own Kefir Milk or water kefir with real kefir grains. Some natural-Paths recommend going slow at first since it has trillions of probiotics in a serving, and anything that combats candida can cause die off symptoms from the extra toxins released when they are killed. Saccharomyces Boulardii, is a Probiotic that actually eats candida & quite a few pathogenic bacteria including C-diff. Usually even beneficial yeasts aren’t a good idea w serious candida but this one is recommended by the best specialists out there for candida SIBO and as a great probiotic to take during antibiotics, if they absolutely must be taken. Out of everything I’ve tried to combat Candida die off, which can be absolutely brutal in the beginning if u don’t start very slow, Thorne Research - Molybdenum Glycinate 1mg capsules are by far better than anything else I’ve tried. Highly recommend at least getting a bottle to have on hand, and they’re only $11 on Amazon. Just taking 1 w antifungals is often the difference between no symptoms and feeling rough, but when I’ve had really bad detox symptoms, taking 4 on an empty stomach eliminated 80-90% of them in 15 min! That, staying very well hydrated, going slow, and taking less antifungals when not taking them w food have been the main keys to not getting sick.
@@Brockt87 Thank you so much for putting together all that helpful info! I too have fibro w/underlying candida I will try some of the products you have mentioned
Stephen Le Page, This video is 4 years old. Lots have change since and yes, many are testing positive for Lyme Disease. I will get tested this week after suffering for 20 years with FM.
YAY!!! FINALLY!!! At least we're in a diff direction! I was VERY impressed with whole video. Soooo easy to understand and soooo logical. I cannot wait til it's out on the market for all of us that suffer this horrible disease. Only wish I could retrieve ALL the money I wasted on everything else out there that "claims" to heal fibromyalga! Now THAT'S a depressing thought!!
Hi interesting video, I have had fm for the past 30 years. please would you know any research taking part in Englandx
Thank you for your help, wish the doctors would take notice and give me the support I need.Instead I am penalized and have virtually no support, and in fact my GP lied over my health to the benefits agency. Sad old World we live in
But Thank you trying to find help for us.
What an incisive account about this central nervous system disease! I'm keen to hear a follow up on further Naltrexone testings.
Watching this in 2023 and Doctors still haven't caught on .
Low Dose Neltrexone caused my perforated colon , gave me muscle spasms and joint pain . Insurance doesn't cover it and is 2023. I don't recommend!!!
It's now 25 June 23. Still no real help. 😪
@@lynergy257oh no, I’m supposed to start this Monday 😫 I was hoping to come here and hear good things because im skeptical since meds in the past have damn near killed me 💔
Funny, he spent more time on what 'opioids' do which aren't half bad. But, no time on the other drugs, "they do have some "side effects". And there are nutritional supplements that work for me; but not by themselves. You have to incorporate a lot of different items to battle this 'monster'. My 'illness syndrome' is never rewarded, nobody really takes me serious. After all, it's not cancer. Sometimes I wish I had cancer, people would treat me better. Not really but you know what I mean.
+ RESEARCHCHANNEL, you need to change the title of this video to a title similar to "2009 Stanford Conference on Fibromalgia" You people are doctors and you done your thesis and you call this video "An Update to Fibromyalgia"??
The ICD-10 book already recognizes FM as a true medical condition and more probing needs to be done by neurologist, endocrinologist, rheumatologist, etc,.which many physicians don;t care or don't know how. We are still WAY BEHIND in treating this complex issue that are affecting millions of people around the world.This video is not fully accurate either for doctors are so blind on looking at things from the chemicals in our food, water we drink, pollution and everything that can affect our autoimmune/nervous system. The TSH, T4, T3 (which may be on the low side of the spectrum and still told everything is normal) You scientists need to delve in much deeper than what you have already done.
We need more money funded in PAIN. Too much money is spent on AID and Cancer, not yet enough on PAIN which has been around since the beginning of mankind! All these chemical drugs in our body can also complicate our pain receptors.
I suffer everyday of Fibromyalgia. & Chronic Fatigue Syndrome/ME. I have no cure, no meds or hopes & I don't die of the diseases. The only way to end my suffering & pain is by ending my life. I scared myself with my thoughts to end my life so many times in the last 3 years & I don't know how to live my life like normal people.
How're you doing now
Exercise triggers MORE pain and I become paralyzed in numerous places
I HAVE FIBROMYALGIA ALL OVER MY BODY.
Gut health is so important but hard to avoid so many foods
The cause of the pain is known since 2013 (University of Wurzburg study - lining of the nerves is gone), just in case not everyone is aware.
Stephie Fehr tell me more about the lining of the nerves being gone, was never to thus!
That's not always true. Get your facts straight.
Stephie Fehr That's Multiple sclerosis where the myelin sheath covering the nerves breaks down. That is NOT Fibromyalgia. In Fibromyalgia there id no apparent injury or destruction of nerve or muscle fibre, its a missfiring of pain signals due to normal sensory systems going haywire and chaotic, for reasons unknown todate.
Study and year should suffice. It's Prof Sommer's study. You can contact her directly.
5:30 very interesting to see Lyme on the slide show as a possible cause. So many people I know with FM have tested positive for Lyme. It's disappointing that he didn't talk about it at all.
do you mind letting me know what dosages you take take of those vitamin a day and what other supplements you've tried that make you feel well.
thanks.
Thank you for a very educational explanation of the CNS in fibromyalgia. I was diagnosed at age 28 and I am now 48. It's been a long 20yrs. Everything that you discussed made sense to me as a patient. I hope that more Dr.s will come to understand this disease in order to help their patients. I was at a lost at 28yrs old. I thought I had some horrible disease that was going to kill me. Glad to find out later it wasn't. Thanks again for the lecture and hope more people will watch and get informed.
Fibromyalgia is associated with autoimmune diseases, thus my diagnosis of Mixed Connective Tissue disorder. I am on elavil, oxycarbazepine and neurontin. I have systemic Lupus, Crohns, circulatory issues, skin issues. Describing it as immuno-deficient is not entirely incorrect. Stress magnifies the symptoms of these diseases thus reducing the bodies immune system. So in fact that is a great part of this disease. Stress from being in pain, stress from loss of work etc etc.
I have been diagnosed with fibromyalgia yesterday, I am relieved that there is a name to my aches, been everywhere meant all fields for tests
I have a history of gout, thyroids, hiatce , ibs, high blood pressure, chronic pain arthritis,
And only now my GP said I have fibromyalgia,
I am an overactive person by nature,
But have been suffering in pain for years and have been complaining to my doctors
I know there is no cure , but is there a treatment which will allow me to live normal
If it is only a perception of pain then why does the upper back be come inflamed hot to the touch and show up on infrared pictures? You are on the wrong track .
Thank you so much. This helps me understand much more.. is anyone else interested in the link between Fibro and Psychic ability..
Thank you for your research I have looked up so much about this illness I was diagnosed with this in 2003 about 5 months after a vehicle accident and loads of trauma the previous year. I was fortunate to have a switched on doctor who suspected that I may have this which was confirmed. I go up and down with this and manage to work 20-25 hours a week at times it is not possible and I am bed ridden. Hydrotherapy pool and walking in it helps. Rain and cool weather and stress trigger me
I do understand, as I do have FM. I can relate.
Hi, thank you so much for this excellent video. I have severe fibro and would love to be a test subject if that would be possible. Gillian , from South Africa.
I want to be a part of this trial!!
True! It hit me when I was the most productive and had to slow down significantly. :-/
good info video. Not counting injury, FM usually is sicological caused which causes fisiolgical problems, nerves/ chemical degradation & imbalance, often dealing with incidents of emotional /physical abuse will help Heal the cause. Abuse problems are- bad sleep, nervous, fear, worry /dread, moods, anxiety, lack of self love / confidence, edginess / sensitivity, bad dreams, stiffness, fatigue, digestive, focusing, swelling, circulation, electrical signals, blood pressure etc,= same as FM ,
Fibromyalgia is absolutely exhausting. I have been on a cycle of flare-ups for months. After three days straight of this suicidal ideation always kicks in. You can just only take so much. Well, I wait for it to pass and then it starts all over again. I never ever ever ever feel rested. Ever. It's been years of this
I hear you. Same here.
It's such a relief , eventhough I'm so sorry for those of us who suffer, to know that you have the suicidal thoughts also... may God help us
@mywingsareyours I agree fully,I can manage the pain but when the muscle pain spread's from head to toe that is what brings me down to the ground with a thud...
I take 24 pills a day I’m on no sugar diet no carbs diet and still in chronic pain
Hope you found improvements in treatment after 13 years of last talk.
Hyperalgesia (central sensitization) is almost exactly like what people with meningitis or encephalitis experience. I think this is no coincidence. The swelling probably adds to direct infection processes to cause pressure on the dorsal aspect of the spinal cord, resulting in problems with blood flow to the dorsal horn. This would also explain why people with chiari malformation/spinal stenosis have similar issues and are probably a subset of FMS.
i really enjoyed this video. i have had fibro for 20 miserable years. i have missed out on important aspects of life since im mostly homebound. you are a wonderful speaker and i learned a lot. lately i have been managing with 2 neurontin per day. perhaps also several ibuprofen. is it safe to take ibuprofen daily if i do not exceed 4 per day? the deep flulike burning ache is finally subsiding and so is my hyperventilation. i can't catch my breath when the diffuse pain is at its most severe.
14 years later and nothing has changed
My life was before severe /ME and after. Ambitious , sporty , perfectionist& driven. Was famous for juggling 100 balls at same time. On top of the world . After emergency c-section With a baby ended up in wheelchair! Yes it is all in your head, you have depression etc after 3 year of different diagnosis like MS etc told me you have FM/ME. I cried atleast knew am not crazy. I know now that I burnt myself & my body out. I lost my career as pharm D. Still no one understand & gets me. Still do too much for my family . This year became 50, and DT2 as well due to reduced mobility . My cortisol has been x20 normal levels and that makes it difficult to lose belly fat. If I could live in deserted island , with no responsibilities and no one to expect too much of me, I would feel better. I am never pain free even with fentanyl patches , SSRIs etc .
Very sorry you're in so much pain....I want to die too.
Can you please explain the laser treatment?
If the drug blocks it, then what would you take for pain, if you can 'only' take an opined?
LDN is the best thing I have in my arsenal for Fibromyalgia. Been on it five years! Until there is a cure, I will take my LDN.
I also do the Iodine Protocol and it helps soooooo much too. Will do both forever.
Looking into Ozone Therapy for my Lyme now.
@MrApplewine Actually there is a great deal known and published about central pain augmentation or sensitization. Substance P (main pain neuromodulator) is increased some 400% in the CSF of FMS patients (Russel, et al), and 5HT (Serotonin) which in the spinal cord helps to reduce ascending pain signals is decreased by about 50%. So there is an increase in pain signal transmission, which can now be visualized in the brain using fMRI studies (UMich, among others).
I have fibromyalgia and in pain all the time no medicine helps me Iam so stiff it is affecting my life
+diamond dior It is so hard..hope you find something that helps ease a little of the pain.
diamond dior All this Lyrica and Cymbalta actually leaves you in worse pain and brain fog plus side effects you dont need like more fatigue.
Fast acting opioids help in crps so why not in fibronyalgia.
Like Oxygenic, Instanyl.
Low acting meds have not helped me. Tramadol a bit but did not stop it from spreading (and only fast acting form).
Pulse treatment is the key. The longer or the worse the dituation the more and longer treatment is required in my cae to normalize the system.
Tens helped me but not more than 5 days in a row 24/7 or I get zaps from it (oversensitized to it).
I have a constant source of nerve irritation, which is not that bad but causes the rest to go haywire and stop working correcting. I might die untreated.
So perhaps your meds are not serious enough.
Acupuncture worked but have pain meds ot infrared lamp for the quick after efects for three days.
Also walking in acupillow or doormat helps a bit in the beginning. And keeping limbs in hot water.
But tens had to cover my palms and soles at the same time. Ketamine infusions for 5 days has hekped some (not coma even though they have had come too but you might be allergic or your heart can not tolerate ketamine).
Stiffnes comes from body reaction to pain so resolve the pain. And avoid shaking and vibrations.
Good luck.
@@stevec6893 It is good to know. I could not use either of those, lyrica nor symbalta.
But fast acting strong opioid like fentanyl has half life of only 15 minutes and has power to drag the nervous system back down/normalize/reset it for even the whole day!
You may need more resetting aftetwards if you do a lot of things or things you could not usually do, but because of its short half time, it will not make you dizzy or fuzzy etc.
The stickers do after like 20 hours because your head will not get a break from the stuff itself.
But it depends entirely for how far your crps/fibromyalgia has spread.
Those are really the same thing - fibro is just spreaded form of crps. I would get fibro with poor resetting or without resetting long enough and it can propably go the other way so be extra careful with operations and injuries, and do every operation (even the pulling of the tooth) with one opioid ketamine. It will not affect the breathing but stops paind from spreading and getting more severe. No need to have it a lot as long as it is in the mixture.
So, is there any way to stop the alpha wave intrusion? Even if it didn't solve the rest of it, just getting a good night's sleep would be a blessing.
My symptoms have been really bad lately--after feeling good for a few weeks, it comes roaring back and it takes so much out of me. It SUCKS! Sometimes I can barely function.
I like the guy, finally someone study fibro properly, but I see he mostly exploring mechanisms how it works through brain and CNS but the cause of this all in my opinion has to be some neurotoxins, the key is to find from where this neurotoxins come from. Basically depression anxiety fibromyalgia CFS and many others works through the same mechanisms
I've been having pain in some muscles that specific and is not normal of at least 5 years. Mostly neck, head, jaw muscles, but also a little in one of my right hip muscles intermittently. I found the trigger points Janet Travel and dry needling by physical therepists as my best understanding. Possible jaw bite problems as well. I haven't found a treatment to cure it yet, but I had more pain in the past and dry needling may have treated that. Those pain areas have not come back.
@PowerRedBull I remember this article & It also stated that the Canadian blood service was not going to accept donations from people who suffered from CFS or Fibro because of this virus, Each Fibro case is different & can be caused by several factors so it's not a one size fits all kind of Illness.
not necessarily, but if you are craving foods and over eating some types of food it could certainly cause mildly similar symptoms
2009!! Time to update!
What about injuries over time?
Tramadol is absolutely terrible. I was on 200mg/day for about 5 months- my physician claimed because it was a non-opiate working on opioid receptor sites that side effects would be minimal. it decreased my pain and lifted my mood- until I missed a dose. What I thought was my fibro pain was just the beginning of a hellish 3 week withdrawal. Do as much research on any medication as you can. The best options lie within that of your emotional reactions to the pain!
I've had Tramodol for FM doesn't make any difference. BUT didn't have any problems with withdrawal at all.
05:22 O nuts! My friend went thru that. I'll definitely have to look into this more.
@theneuroperson There is also myofascial pain syndrome, which appears to be caused by micro ischemic muscle nodules in the muscle. Additionally, all of the markers for fibromyialgia showing increased pain do not prove which direction the causality goes in. If a person is in pain you would expect pain biomarkers to be higher.
I'm looking for 2020 current answers. am I wasting my time watching this?
Yep 👍
It's now June 2023.