An Update on Fibromyalgia

[@kathymcgirt8944]

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.

[@estherk7484]

Wow Kathy…unfortunately, you just don’t get it….and you never will.

[@alexandriawoods2558]

Agreed

[@dp1275]

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

[@wvjaybird5]

@@dp1275 Hopefully humanity will soon find some relief for long term pain. I hope you find that relief soon. 😢❤

[@JulieTobin-Ruszczyk]

The brain is much more powerful than you think

[@carolynsmith9972]

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.

[@debbypolk5457]

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

[@davidkruse4030]

Sounds like narcolepsy or cataplexy

[@catheyderosa9594]

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.

[@fibromyalgiasucks2326]

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???`???

[@animeart1703]

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

[@musicloverforever8475]

@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

[@musicloverforever8475]

@@animeart1703 hi, I hope you get a break from the pain soon,

[@marydelgado7187]

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.

[@musicloverforever8475]

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

[@wvjaybird5]

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.❤

[@WendyHannan-pt7ez]

I’ve always managed pain very well, I’ve been told that by Drs nurses, but fibromyalgia is something else, it’s relentless it never goes away. I’ve never cried with pain, but I’ve come close with fibromyalgia pain.

[@Braiella]

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.

[@debanjanmondalphysio]

Best information about fibromyalgia. I recommend this video to all my fibromyalgia patients.

[@PechilvrsPreciousPeepsNursery]

Times for update....it's 2019

[@marleneholloway7775]

It's now 23.

[@joycestites2075]

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.

[@LGH764]

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

[@jillharding2991]

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.

[@FIBROMOM]

Fibromyalgia - the other F word

[@stevechoinski2701]

True story

[@joelleenbeanks3767]

I love you... me biolgician fighting fibo for 10 years.I would assign 3 FFF ....s to it all.

[@everevelyn1094]

FIBRO MOM you got that right!

[@honerdcouster8723]

Touche'

[@Queenalika85]

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

[@Brockt87]

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

[@jeannettegrondin7190]

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 ?

[@diannetedesko1923]

@@jeannettegrondin7190 ‘

[@estherk7484]

Geez Brockt…..have you ever given any thought to writing a book?!?!

[@lynergy257]

Watching this in 2023 and Doctors still haven't caught on .

[@lynergy257]

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!!!

[@marleneholloway7775]

It's now 25 June 23. Still no real help. 😪

[@rochelle-ofcoursehatch7912]

@@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 💔

[@ibrowzbmx4life]

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!

[@christinamarie9284]

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.

[@dprideaux]

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.

[@MarilynneGrahamTimco]

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.....

[@martharut]

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.

[@Susdenfann]

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!!

[@ValentinaAnastasia]

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?

[@carolestrella1212]

I have had 5 car accidents. You do the math.... I don't drive anymore.

[@lorrainedusseau5760]

Everything seems to be too loud, bright or fast

[@1savdsoul439]

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.

[@janetscofield7740]

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.

[@1savdsoul439]

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 KZbin. 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.:)

[@caroldeans5363]

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.

[@kimberlyhortz6471]

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.

[@bunnyjeanne4]

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

[@jillr759]

Really need an update! Wow I hope we’ve learned something the last 15 years.

[@richcarson6899]

I loved this Fibromyalgia video by Stanford's Dr. Mackey MD, PhD, covering pain, genetic predisposition, disease mechanism, and most importantly, treatment. - Rich

[@julsjuls2009]

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.

[@jeannettegrondin7190]

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 !

[@deborahhawkins4531]

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.

[@tinaayer801]

What a great reasercher. Thankyou for this. You can do a lot in medicine when you have an open mind.

[@gorealestate]

Absolutely awesome lecture on Fibromyalgia! Thank you for such great, accurate info!

[@ctcatlady]

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.

[@ghazalapaul9938]

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

[@deanna.mdeason2361]

Thank you and bless you for not giving up on us!!!!!

[@douglasmartin5453]

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

[@iseecheese]

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 ,

[@janiceeskelinen8937]

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.

[@evam.2101]

Robert, women give birth.we are not weak with pain.

[@nuffsaid3548]

+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!

[@eilishholden9886]

Eva Madrigal 8

[@down-to-earth-mystery-school]

Giving birth is one of the hardest things any human will do, however, it’s temporary pain (usually). Chronic pain is different, waking up everyday in excruciating pain wears on your mind, emotions and body.

[@betsybk11]

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!

[@maxsy1]

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!!

[@SARTORONTO]

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.

[@odonata9838]

The best video on this subject so far. Thank you! My symptoms feel relief just listening to this lecture.

[@Exile0nMainStreet]

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.

[@catherinemoloney1336]

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

[@Eileen-d2p]

Try foot spa it should help getting more energy back at least you get to take a break by turning on the foot spa, all the best❤

[@Eileen-d2p]

Awesome thankyou Try foot spa, heat lamp and heat pad did me good was able to wizz around tidying up around the house.

[@davidolenick2280]

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 .

[@Jennbooth3]

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.

[@roslynewatt7833]

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. 😖

[@down-to-earth-mystery-school]

I can’t even wear a bra anymore

[@rachaulbermudez]

2009- 2018 any new news we are still suffering :(

[@Brockt87]

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.

[@jenniferfleming8698]

@@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

[@mawg7598]

Great video and gave me some options to consider. God bless you n yours.

[@rachaulbermudez]

But Thank you trying to find help for us.

[@lisap3344]

I do appreciate your dedication as I am sure all fibro patients do.

[@shahilagh]

This person and his talk were definitely much more informed than what the talk in Michigan was done ...

[@Freesoul54]

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 .

[@HANYNE1]

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.

[@goddessvibes08]

How're you doing now

[@MrApplewine]

@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.

[@MsConstrued1]

not necessarily, but if you are craving foods and over eating some types of food it could certainly cause mildly similar symptoms

[@SF1976.]

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.

[@joykipp7025]

Stephie Fehr tell me more about the lining of the nerves being gone, was never to thus!

[@dr.h.e.sawyerjr.9984]

That's not always true. Get your facts straight.

[@stevec6893]

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.

[@vanonthemoon7975]

Study and year should suffice. It's Prof Sommer's study. You can contact her directly.

[@SmokeyKeitaTEACH]

Myelin is a dielectric (electrically insulating) material that forms a layer, the myelin sheath, usually around only the axon of a neuron. It is essential for the proper functioning of the nervous system. It is an outgrowth of a type of glial cell. The production of the myelin sheath is called myelination, which begins in the 14th week of fetal development, although little myelin exists in the brain at the time of birth. myelination occurs and continues through the adolescent stages of life.

[@frangipang1955]

Smokey Keita ....yeah, it's interesting. I have Fibro but also episodes of Trigeminal Neuralgia which is eroding of the Myelin Sheath, that's around the Trigeminal nerve. Others have it too.

[@hundun5604]

36:36 I cannot speak for others about opioid pain-medicine for FM, but for me the difference is huge. It's a difference between day and night. Without it I cannot sit up straight for longer than 15-30min. Same thing with standing up straight and sleeping. It probably saved my life. Actually, I'm quite sure that it did. I do agree that it is a short term solution. Those medicines aren't build for long term solutions.

[@americorestojr1762]

I have chronic pain for 30 years since I was 14 years old. I used small dosages of steroids which helped with pain 2month on 6 off helped tremendously but Phycians refuse to agree with this treatment method.

[@mahlahtownes1601]

I have fibromyalgia and in pain all the time no medicine helps me Iam so stiff it is affecting my life

[@FIBROMOM]

+diamond dior It is so hard..hope you find something that helps ease a little of the pain.

[@stevec6893]

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.

[@JoJo-dj9ek]

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.

[@JoJo-dj9ek]

@@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.

[@babybunnies]

+ 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.

[@synapse131]

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.

[@barbaracoleman7919]

Best summary of FM I have ever heard!! I will be trying LDN soon!

[@standard13]

What an incisive account about this central nervous system disease! I'm keen to hear a follow up on further Naltrexone testings.

[@theneuroperson]

@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).

[@saraswatkin9226]

Hope you found improvements in treatment after 13 years of last talk.

[@frederickharwood]

Hi interesting video, I have had fm for the past 30 years. please would you know any research taking part in Englandx

[@down-to-earth-mystery-school]

One thing no one talks about is how this condition affects your ability to work outside the home and work inside the home. I emptied all of my life savings to find out what was wrong with me (US healthcare system) and now I can only work about 1 hour/day. But our govt doesn’t recognize fibromyalgia as a disability. Many chronic pain sufferers are low income and even homeless.

[@elisabetefatimadossantos8084]

Queria assistir em português ,como faço ?

[@casperblackcat1975]

@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.

[@Matt-to1bi]

I take 24 pills a day I’m on no sugar diet no carbs diet and still in chronic pain

[@brianamason7712]

Hi! I just wanted to say you are a wonderful speaker and you explained things well and at a perfect pace. I have a grandmother who was diagnosed and I found it fascinating to learn about. I am hoping to become a brain researcher either as a neurologist, neuroscientist, psychologist, etc. I'm also going to be a senior this year, and will be graduating with a full IB diploma. I'm considering Stanford as one place that I may apply to, although I am not sure if I will be able to go to such a prestigious university. I admire your work and I'm impressed by your obvious enthusiasm. Thank you for being an inspiring figure.

[@jairo06tu]

P9999999

[@jairo06tu]

99999

[@jairo06tu]

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[@jairo06tu]

9999

[@jairo06tu]

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[@eccentricoldcow]

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

[@lisap3344]

Awesome, finally someone who is onto this !🙏👍🏻

[@Eileen-d2p]

I agree, I'm brand new to this the 2nd time I got fibro pain I had my heat lamp close by so I turñed this on it heats instantly and is amazing it helped with the pain efficiently and effectively. I held the heat lamp at a certain distance so as not to burn this was so pleasing to of come up with this quick solution. A heat pad would help immensely but would be slower to heat quickly enough but good to keep on hand. I think it's a great idea to use a foot spa since it vibrates upwards in through the legs , so worth trying to get around efficiently and effectively, try use it daily.

[@cippanddail]

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

[@jeannettegrondin7190]

Gut health is so important but hard to avoid so many foods

[@greatlistener3740]

I clicked on this video just to comment that a fibromyalgia video update is over an hour long?.

[@Kay-tc3go]

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.

[@PechilvrsPreciousPeepsNursery]

This video although informatve is very old and hasnt been updated...........I return hoping for an update or I will re-listen in case theres some info that I may be able to research and find something else....if anyone has any new info please gmail me

[@zeina3812]

+Carolyn Porter i am looking into knox gelatin, i've been researching it, a woman in my fibro support group says the gelatin works. let's hope it works for me! good luck! and may the spoon be with you :)

[@PechilvrsPreciousPeepsNursery]

you as well!

[@asherasator]

+zeina abuzeid Gelatin in general has a high amount of glycine, 21%. Glycine is involved in neuro activities so that may be one of the reasons of its benefits.

[@ProverbsQueen1]

Can anyone tell me if being nausea a system?

[@misskurmis]

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

[@yoya4766]

I hear you. Same here.

[@kathycochran544]

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

[@stephenlepage]

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.

[@patrick45sue]

@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...

[@rondarawson6236]

WHAT ABOUT PEOPLE WITH FRONT RIGHT LOBE DAMAGE....? Also what about a node or tumor in lower spine.....will this cause fibro pain as it's in the vertebra???

[@atiqrahman7289]

Good medical discussion.

[@katierichley4130]

I want to be a part of this trial!!

[@AngelOne11]

If you are taking a 50mg dose of naltrexone does it still work for fibromyalgia?

[@incensejunkie7516]

AngelOne11 That is not low dose naltrexone. With Fibro and ME/CFS, max dosage is 4.5 mg. Since we are so sensitive, we have to titrate up slowly. You have to listen to your body for optimal amount, for some it's as little as 1.5 mg. Many are at 3 mg.

[@jennysand1]

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

[@moreporkowl1218]

Agree, very informative, but is old and out dated. I have yet to hear of any long term chronic sufferers actually having success stories over long term periods. Not one person. A lot I have read of, spoken with or had written communications with have either had short term results, and had to go off the drug/s, or go off the drugs also due to terrible side effects. Some learn to live without taking to many typical painkillers, by minimalising activities, very gentle mobility trends, rest, and good diets that suit them. They of course are still in pain and low moods etc, but they are lessening the cyclic aspect and impact of their Fibro Flares. They are still disabled, suffering but not burdened further by the effects of various drugs. I push through pain and stiffness every 24 hours and all the other issues that go with Fibro.. Have for years since head and spine trauma. Controlling the body temperature is a hard one though. I still put up with chronic fatigue to. I live on my own, a lot more reclusive now due to Fibro and all the subsequent draw backs, set backs, and the ripple effects it has. I cannot walk far now, and have to use a crutch. I have the very painful muscles/tendons that it feels like (splg?) Riggamortis 24/7, tinnatus, nausea and painful stiffness, so slow on my feet, bad balance and dizziness etc.. I used to have an extremely high pain tolerance, but something changed after my head and spine trauma... tsk tsk... I pray they find something long term and suitable for all sufferers that is safe to use for our condition and for others similar. Will keep an eye out for any updates.. thank you.

[@dr.h.e.sawyerjr.9984]

Riggamortis ? WTF is Riggamortis ? The actually word, is RIGOR MORTIS. It means the stiffness caused by DEATH.

[@moreporkowl1218]

Wow... are you an actual Doctor?? If so you should learn to be more polite... So what if I miss spelt the word Rigor Mortis... Big deal. If you read properly what I wrote, in the context I wrote it you would 'get what I was trying to say'.... and that is... qUOTE 'I have the very painful muscles/tendons that it feels like (splg?) Riggamortis 24/7, tinnatus, nausea and painful stiffness, so slow on my feet, bad balance and dizziness etc.. unquote.... I actually do know what Rigor Mortis is, I just miss spelt it, and used it to describe how a Fibro sufferer 'me' puts up with..

[@stevec6893]

MoreporkOwl That person is rude. We know what you mean its a paralysing stiffness. Difficult to explain. A cross between a spacticity of the muscles and spasms that needs to be stretched out daily.

[@BigWill2k]

Im glad you said nausea, people dont beleive me when i say the pain gets to a point where i feel sick..

[@kdcruz75]

@@dr.h.e.sawyerjr.9984 Go fuck urself...with ur fucking arrogance... A sickness of most doctors on this planet.. They r turning into a cancer on this covilisation playing along woth the requirement of the debt system to create money off of the death of humans...

[@katiahurtado6598]

Such a great video! Thanks.

[@DryBONESreborn]

What about injuries over time?

[@LadyAmaz]

Thank you so much. This helps me understand much more.. is anyone else interested in the link between Fibro and Psychic ability..

[@xXZeroSynDromeXx]

Great talk. Thanks for posting. I have no doubt that this person is qualified and knowledgable. Before everyone asks their doctors about guaifenesin, I'm pretty sure that when he talks about guaifenesin, he thought he was talking about dextromethorphan. Just FYI. I'm a licensed pharmacist by the way.

[@janetscofield7740]

No, he is talking guaifenisen. There is a book that came out about 10 years or a little more, ago about treating fibro with guaifenisen. I can't remember the the authors name of course (fibro memory loss). It was written by by a MD. Very specific protocol. I and my 2 sisters who have fibro all bought the book and tried it. We had some mild improvement but it was shot term. Possibly placebo effect. Now I am going to obsess about the authors name.

[@jajanesaddictions]

Elavil makes my legs jump no end. (RLS). Cymbalta made me not give a fffff about anything and the withdrawal when went off of it was horrendous. That Gabapentin makes you gain weight so fast and you can never lose it. Exercise does make it worse. In 2017, we still know nothing about Fibro and Chronic Fatigue.

[@marleneholloway7775]

I was diagnosed with fibromyalgia many years back now wide spread pain but no chronic fatigue.

[@marleneholloway7775]

I have not found any medication that helped..so it's ongoing..

[@emsbeautytips-bh7vd]

I was told that I have fibromyalgia,after I found a proper doctor who have diagnosed my condition. I just want to ask people who have it-do you feel creepy crawles going from your head down,or from leg-going up through spine to your head.Usually it's the side of the head fr me,my legs and hands tingle,like I have million needles poking me,the symptom that makes me tired-pressure in my limbs.I feel like I have stopped my circulation on all four limbs,and the pain gets cruel. I don't have memory loss or hard time talking or remembering words like some people. I am still wondering if those symptoms I have are typical for fibromyalgia? M

[@davidahern2619]

Sean Mackey,MD,PhD

[@latainadeborique]

Exercise triggers MORE pain and I become paralyzed in numerous places

[@AntaresSelket]

Being ill all my life with many conditions allowed some doctors to feel that they could state I was crazy, but I finally found many doctors over the years who state all of my conditions are real.This video linked them up in a way that I felt they were connected but no doctor wanted to confirm it.I began with extreme allergies,autoimmune deficiency,disabling migraines,advanced endometriosis (even after a hysterectomy at 25yrs), fibromyalgia,inoperable erosive esophaghitis,irritable bowel syndrome,manic-depression,obsessive-compulsive disorder,insomnia,constant and rare infections, syncopal episodes,diabetes mellitis II,and degenerative joint disease.I have lived every day in pain since I was 13.I took almost 4yrs of acupuncture before it stopped working, and tried a long list of medication, but I'm immune to Morphine,allergic to most vitamins, medications, and bug bites, which all make treating me a nightmare.So now I realize everything ties into each other.

[@sumairanaz1949]

My God, I am so sorry to read that you are suffering from so many diseases. I am suffering only from fibromyalgia, hypothyroidism, osteoprosis, some gut problem and hypertension but life has become difficult. In your case, worst of all is allergy of vitamins because I have found in my search for cure that vitamins and minerals are the most important thing and should be taken in very high doses. I think you should first try to make the autoimmune condition better by studying it yourself. You will automatically select correctly the specialist doctor you should consult with at each stage. I myself started with a medical specialist, then rheumatologist, neurologist and now intend to meet a general physician expert of endocrine system. It will be different in your case. May Allah bless you and make things easier for you. Ameen

[@AntaresSelket]

Thank you for the blessings and may Allah return them to you. I agree with you that finding a good doctor is essential. I was lucky to find two Internal Medicine Physicians that are great. The first I had for 15 years, and the second I am still seeing. Unfortunately, I am allergic to Iron, penicillin, and many other medications or ingredients that are in vitamins, and antibiotics. So treating me during an infection is difficult. I was permanently disabled at age 35 because I reached a point where I had tried all the old and new drugs, therapies, surgeries, and there was nothing else to be done. I was in so much physical pain people noticed the pallor in my face, how bad I trembled from it, and my hip would swell throughout the work day until it was noticeable (due to inflammation). I was put on hospice for a while,I now have to sleep in a hospital bed, use a cane or walker, and I can't really leave home for more than a few hours. Even on pain meds, I'm in enough pain to make me shake. I can't go to a public place without catching a cold or flu which usually turns into pneumonia or bronchitis. However, since age 18 many doctors have told me that I handle pain well. This became evident when I had a hysterectomy and the surgeons had to tell me that I had the worse case of endometriosis that everyone in the operating room had ever seen. It had already spread and they couldn't get it all. They wanted to know how I was able to work up to the surgery date and ten more years after. I'm sure you know what problems being in pain 24 hours a day is like. I try to distract myself from it because I've tried all the pain meds and they only take the edge off of, they don't take the pain away.I am a natural researcher, so I look into my health problems and keep track of the latest possible cures. In fact, I have diagnosed my health problems correctly since age 15 when I came across a physician that thought I was a hypochondriac. When tests came back proving I was right, I decided to take my healthcare into my own hands. What about you?

[@sumairanaz1949]

Thank you for your kind reply. I wil be able to tell you about fibromyalgia only. I am 28 years old now. Osteoporosis appeared in my teeth when I was just 14 year old but unfortunately I visited only dentists for it. None of the dentists could diagnosed it for years and this loss of vitamins and minerals continued. When I was 18 years old , these deficiencies appeared in the form of mild fever and low BP which was wrongly diagnosed as typhoid and I was given antibiotics continuously by all the doctors until I was 22. Then a medical specialist gave me multivitamins and fever vanished. Unfortunately, I disliked to study biology so I never tried to take it seriously. I continued my studies throughout this time with A grade always and completed masters in physics at the age of 22. Then I did M.Phil in cosmology/astrophysics and started PhD in quantum optics in 2012. Last year, all symptoms of fibromyalgia started on 27 Feb except muscle pain and skin allergy which started within few months. In emergency, hypothyroidism was diagnosed but I went to the medical specialist at an earliest who had cured my fever by multivitamin few years ago. He diagnosed vit D def and then osteoporosis. At this stage , I started studying my diseases. These didn't explain all of my symptoms. So I met several doctors but all in vain. I didn't stop my struggle and finally found an exceptionally good rheumatologist who believed my feeling and diagnosed fibromyalgia. That time I was dropped from PhD. Then I observed in winter that skin allergy, Muscle pain vanishes in sunlight and fibro fog decreases noticeably. My rheumatologist said it was just due to vit D synthesis but I wasn't satisfied with his answer. I searched and found that serotonin is also directly synthesized in sunlight and also that it is formed from vit D. Thus I concluded that my vit D deficiency ended serotonin as well causing fibromyalgia. So I consulted a very good neurophyician. He gave me serotonin reuptake inhibitors and increased the vit D dose. Until now there is no significant improvement but I hope for it. These days , I am searching for cause and cure of fibroinstead of completing my research papers. Hope to share the upates about fibro research with you soon.

[@sumairanaz1949]

I am very much impressed that you have researcher's nature since very young age and you are continuing it despite of all of your medical problems

[@AntaresSelket]

That has a lot to do with having OCD (Obsessive-Compulsive Disorder). When I want to know something I do my research. I have come across many people who went to college to learn something and after a conversation on a subject, were shocked at how much I knew and that I learned everything by myself. Luckily, the two Internal Medicine Physicians have always accepted that I knew my body better than they did. In my twenties, I almost died, and I knew it would take awhile to get an appointment with my Physician. By the time I saw him I was under 100 pounds, running a 104 degree fever, and my blood pressure was so low, I shouldn't have been able to sit up. However, I had driven myself to the appointment, gone to work the day before, and walked myself into the appointment alone. Unlike the E.R. Physicians, who ran blood tests, and urinalysis, my doctor asked, "What do you think is wrong?" I stated that two months ago, when I made the appointment, I had a vision of spots in my kidney. Yes, I have visions. He turned around and made arrangements for a renal ultrasound. I drove myself home after the ultrasound only to have my doctor call me up and explain that I needed to get a family member to drive me back to the hospital so they could admit me for a renal abscess (which is rare for anyone under 50). For three days I lay in a hospital bed running a fever that moved from 103 to 105, while the lab tried to come up with an antibiotic cocktail that was powerful enough to fight the abscess (because I am allergic to the more powerful antibiotics). I was packed in ice every time the fever went to 105, and I was wide awake when they put a JP Drain in my back and straight into the kidney to start draining the abscess. I survived, even though daily tests showed I was getting worse. They were about to give me a blood transfusion and move me to ICU.I became determined to survive for my son. i shocked all the doctors when 5 days after getting the antibiotic cocktail I walked out of the hospital against their wishes.I knew I would get better faster at home with my son. When it came time to get the JP Drain out, the Physician said that I was the first person to not utter a noise, yell, or cry during the process. I have a high tolerance to pain and that is the only reason why I worked as long as I did. This is also why the amount of pain I am in now can kill me. The endometriosis has spread to organs I need, and is even making digesting food extremely painful, so that I will go for days without eating. The fibromyalgia is so bad that no one can touch me.From doing my own research, I knew I had endometriosis 12 years before it could be confirmed. I knew what treatments they were being suggested for therapy, and I brought them up to the specialist as treatments I wanted to try. I research all my medication so I know what they are suppose to do, how much I am being given, and I am having side effects.Being stuck in a hospital bed all day long, I continue to research and learn new subjects. When your body becomes your enemy, you should rely on your brain for an ally. By the way, my physician told me to put a full tablespoon of baking soda in a glass of water (I use a 16oz. water bottle), stir or shake and drink everyday. It really helps fibromyalgia pain. Sorry, for rambling!.

[@katalina125]

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.

[@karenhughes2415]

Putting poisonous meds in the system doesn't solve the problem it causes more issues seems fibromyalgia people have hypersensitivity to meds and continuing to ignore us when we ask for help causes us to end up with a huge list of illnesses on top of fibromyalgia i know I have 13 chronic conditions after drs not being retrained in these conditions so just offer antidepressants

[@pearleve9105]

This video is from 2009, There must be some new research on this channel. I am researching on my own at this point.. Does anyone know more, because still many just want to give you medications, and I am personally not one of them.

[@judychurch6504]

Have you gone to wwwfibromyalgia.com or .org, also a good source would be the CDC. WWWcdc.org.

[@pearleve9105]

Judith Church Thank you for your input and direction for me to look, You know there are so many sites, probably been on the fibromyalgia one before, but I did check it out, looks like a great site. And www.cdc.org, was interesting, checked it out a bit , will more also. but I did actually find a site where studies are done from that site worldwide. Thank you , I am thinking about attending a study, but the energy level is low and I am in a lot of pain everyday,, so just getting there might become an issue. But in time I will check out more on it. In case you or anyone else wants to know about the studies, the site is. clinicaltrials.gov, Thank you again..

[@judychurch6504]

You are welcome. Hope you feel better. Pearl Eve

[@pearleve9105]

Thank you!

[@DryBONESreborn]

If the drug blocks it, then what would you take for pain, if you can 'only' take an opined?

[@addypine3279]

I've yet to see any doctor suggest Meditation as an alternative therapy for M.E or fibromyalgia. This suprises me as I meditate and find it useful in every aspect of my life. I am wondering why it is left out as there are many scientific studies showing the many benefits on the brain.

[@synapse131]

Both are at play in ME/CFS and FM. Much evidence has been found for peripheral micro-circulatory dysfunction in these diseases which results in rapidly accumulating metabolic by-products in the muscles with activity (similar to lactic acid but pathologically severe.) Much evidence has been found for CNS dysfunction: hemorrhaging in the dorsal horn, abnormal SPECT and PET scans, neurochemical deficiencies, EEG evidence showing a micro-seizure interfering with sleep and cognitive function, etc.