Understanding the Chain Reaction that Causes Fibromyalgia: FibroManual Book Talk #1-
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- čas přidán 11. 07. 2023
- A casual update and refresher on what we know about the cause of fibromyalgia as I describe in my book The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor amzn.to/3Uql7wg
This is a recording of a live webinar with a great Q and A session! Links mentioned in the talk www.myofascialrelease.com and www.mfrtherapists.com
About me: I graduated from Tufts University School of Medicine and am board-certified in internal medicine. After developing fibromyalgia in medical school I was able to find integrative treatments that helped me feel much better.In my videos I hope to inspire everyone dealing with #fibromyalgia to remember they are #fibrofierce!
Sign for my email newsletter for all things #drginevra and #fibro at www.drginevra.com/
Ooooh Dr. Ginevra, I have been missing you! I am a patient from your early days at OHSU. Moved to Canada to marry my love, and have been happy (but struggling with the fibro and Sjogren's), but choosing to head for a happy life has been the best therapy. It took a divorce, a move to another country, learning to want less and live minimally in a natural place doing natural thing like gardening and teaching ecology. You and your book helped me a lot! I still suffer the psychosocial fallout from an "on and off invisible illness".
I am so glad you found me again! And that you followed your heart 💜
Hello from Ontario, @marianwhit, congratulations on your move and newfound happiness🌷🙏 I understand how you feel about losing your Doctor as a result of your move, I have not been able to find one in the big city of Toronto. Have you got any specialists name that is worth sharing with a fellow fibro fighter?😊
Thank you so much Dr. Ginevra for all the work you’ve done and continue to do in the field of Fibromyalgia study, research, teaching, and your own experience. All of this feels so valuable and I’m really grateful to you!! ❤
This make so much sense to me. Thank you for your videos!
Although my first memories of FIBRO symptoms began approximately 40 years ago I was diagnosed just over 20 years ago and only recently began noticing an uptick in new information that seems to be really showing potential.
The onset of my symptoms seems to correlate with a very traumatic move and two subsequent events just after I turned 15. When we moved suddenly my school records were lost. I was required to take all of my childhood immunizations over again and they were all administered together in one quick visit to the doctor. A few months later I was tasked with sorting through our belongings which had been hastily put in to a storage unit while damp and subsequently I was exposed to a huge amount of mold.
Fast forward to today, I have lived with all of the classic FIBRO symptoms ever since and as everyone else I have found help through trial and errors along the way. I also have tested positive for mold toxicity and in my attempt to treat that I have stumbled on to something interesting.
I began taking glutathione for the mold in my system and was taking it on an empty stomach just before bed. I found that I began waking up feeling really rested, I mean amazingly rested!
Now, I have never had insomnia but as most of us know just because we are able to sleep doesn’t mean we wake up refreshed.
Since then I have learn that taking Glycine and NAC will help the liver create it’s own glutathione which is preferable so I have switched to taking both Glycine and NAC together at night instead of the Glutathione supplement and I am still finding my quality of sleep is incredibly better.
I would be interested in knowing if anyone else has experienced this and if there is any science on it?
So glad you have found improvement in sleep quality, that is such an important factor in fibromyalgia! I know that glycine itself can improve sleep quality, but I am not familiar with using glycine and NAC for glutathione creation.
Hi. 👋 I’ve been taking magnesium bisglycinate before bed for a couple of years. It does seem to help in that my aches in leg muscles don’t wake me up like they used to. Not sure what NAC is. ( Will look up) or glycine/ glutathione is related at all. It’s all too Hard to try and figure IT out when your concentration is split-painful and foggy at the edges. My puppy therapy has been of great benefit- adding joy/ routines-even now as she is grumbling and distracting me from this. My Sleep schedule has improved, but is still not refreshing. Thanks for doing the research and providing some fierce hope Dr. G. 🪬🫶🏻🪬
Hi, newly diagnosed fibro here. Finding your videos has been so helpful in a truly difficult time. Thank you for sharing. You’re making a huge difference in our community 💚
Thank you 🙏
My best friend has had fibromyalgia for seven years now, and she said you explain her symptoms better than anyone she ever heard. I suspected much of what you said in this video but I lack the scientific expertise to explain it so well. Thank you for the work you are doing it's so important 🙏🙏
I am so glad to hear my explanations resonated with your friend. It can be so healing just to finally understand what’s happening in our bodies with fibromyalgia!
Your explanations clearly resonate with me!!!! Thank you for what you do!!!! ❤️
Australia ... we have your book ... YAYYYY
I suffered years and years from all symptoms of fibromyalgia but no one diagnosed it!! They thought my symptoms are not related to each other !!!! I have sleeping troubles and even apnea and they consider it a solitary symptom, to be honest me myself never connected my symptoms together!!
Thank you so much for helping me to understand my fibromyalgia pain and sleeping problems relations.
So glad my information is helpful!!
@halahmam668 . Hi hope you are well. I have had Fibro for 5 or 6 years now and haven,t had a good nights sleep since. I have started using Cannabis oil about a month ago and I am sleeping like a baby and dreaming and waking up refreshed and rested which is a real nice change 😀 and I like it. Go to bed head hits pillow and before too long out like a light next thing suns up and I am ready to face the day. I take half a ml morning and night. I do feel that it is reducing my inflamation and also feel that I will get more benefit the longer I take it. I have spent many a night doing a million miles in my bed tossing and turning because I couldn,t find a sleeping position that was painless and then waking up completely exhausted. The oil is use is by Canatrek it is called Ruby Oil it is 12% CBD and 12% THC. It is expensive but it is helping so the price doesn,t really matter I just spend a little less on other things.. Check it out it may help you get some good sleep which makes all the difference. Please stay safe. Regards.
Would you ever consider making an audiobook version of the Fibro Manual?
I know I wished there was one during my first reading!
With how bad brain fog can get sometimes, it can be much easier to understand concepts if you only have to listen (Even without the visuals).
I SO wish there was an audiobook of the FibroManual, unfortunately it’s up to my publisher and they haven’t wanted to do that. I will keep asking though!!
@@DrGinevra I had a feeling it might be something like that, let's hope they change their minds!
On the topic of translating the Fibro Manual, I wholeheartedly support that aswell. There are little to no books on fibromyalgia in my native tongue (french), and I know many that would benefit tremendously from this book.
I thank you for the time and efforts you put into helping fibro sufferers, as well as giving me the tools to help myself.
An audio book would be wonderful 🙏
I’d love that too, thanks for all the wonderful work you do. It’s helping many fibromyalgia sufferers. It’s giving us hope 🙏
An audio book would be awesome,. I really struggle with reading books due cognitive processing issues. This video is much appreciated but I've needed to break up into smaller chunks. I'm having a fibro fog day and watching to end will be my big win of today 😂
I don't mean to come across as rude but does your publisher get the audience the book is aimed at?
I have both fibro and C-PTSD. I had the Stelliate Ganglion Block and it changed my life, in that the heaviest pieces of past trauma were released. After that I’ve been able to do breathing methods to calm my Vagus nerve, and it does help my anxiety which helps my pain and general angst of the fibro symptoms, but it isn’t enough to make even a whole day better. Maybe if I spent several times a day in deep breathing and meditation I could stand myself a little better. My body and mind seem to be deteriorating more rapidly recently. I will be trying a new physical therapist Monday to see if they can give me any facia relief.
so you recommend SGB? thanks
At about 7:00 you say that a triggering effect turns on fibromyalgia - a "constant, hyperactive, stress response activity", and I believe that's true, but have never heard anyone use that term.
I'm 59, but I started getting headaches about 50 years or so. I remember often (1-2 times a month) going to the Nurse at Jr. High School, and laying down, sometimes w/ an aspirin, for headaches. I also remember fainting on the little league baseball team one Summer, and I was given salt tablets by a dr.! When I moved out onto my own at around 19, and got a job w/ health insurance, I began going to 1 dr. after another, taking dozens of tests, looking for an answer to my headaches and stomachaches. All tests would come back normal, of course, so I was a bit paranoid I could be getting sick from something in the environment. I did go to 1 dr. who diagnosed me w/ fibrositis - but the little info from that time said it was a basketcase term used for pain w/ no known cause. - That wasn't helpful, so I remembered but initially discounted it. Later, when I was about 29, (1993) I got on health insurance and again started going to many doctors. After ruling out other things, I looked into it, and the references I then found called it "fibromyalgia" syndrome (fms), and I was positively diagnosed w/ it by a Rheumatologist - who I see every 3 months, to this day.
Back to your description of it as a "constant, hyperactive, stress response activity" - I believe that may be a very close description of it, due to the quick triggering of my symptoms to stress! Say I'm in a store trying to return a defective product, and I encounter disrespect and hostility from Customer Service - my symptoms like back pain and headache, weakness and confusion can come on very quickly and I usually have to sit down. It's so sudden and fast that I know they're related.
Anyway, when I injured my back, I suspect it brought on the worst fibromyalgia pain and weakness, and after suffering w/ it for about 5 years, around 2000 I had to go on Social Security Disability Income (SSDI). Since then, I have found various medications incl. vitamin D can reduce my headache pain, and other things help, like regular exercise (I like biking), eating healthy, heating pad and/or ice when I have a problem w/ a specific muscle or headache, hot shower, pacing myself on activities, and good sleeping habits. I'm discouraged that no medicine has been effective, and the cause of fibromyalgia has not been found in the 50 years I've had it! Thanks for your video and support!
Your experience chronicles the history of fibromyalgia- first called fibrositis, then fibromyalgia. First a "wastebasket diagnosis", then considered real but with no clear cause. The good news is fibromyalgia science is finally catching up and medicine understands SO much more about fibromyalgia now. I am glad you have found some things that have helped.
We become our own doctors but can not prescribe for self 😢
This was such a helpful video! Not only for myself but also to help my husband understand better. I've had your book since it came out and this wasa good reminder to go back and work on my "fundamentals" - especially my sleep. Thank you for always sharing your knowledge!
Glad it was helpful!
Fascinating and makes so much sense!!!
I loooooove dry needling
Excited to see you more. Sorry you closed your practice. Hugs ❤. This one book is wonderful. I felt like you were in my head because everything related!
I am so glad my book resonated with your experience! That's why I wrote it, so people dealing with fibromyalgia wouldn't feel so alone, and hopefully find treatments that work for them!
Thank you Dr Ginevra. I so appreciate you and your book.
Been dealing with this for 30 years. I Started and facilitated a support at local hospital starting in 1990 for 23 years while trying to get college done part time. I have a study published In Journal of Muscuskeletal Pain in 2000. Still hanging on but going thru menopause made all symptoms worse. Good luck to you think your on the right track. I have been researching all these years myself everywhere I can. Think the long covid thing will bring us relief the are doing good work on studies. I check the NIH, Pub Med and all government data bases for studies.
Great Video, I really think that if I could solve the horrible lack of sleep,waking 20 times a night and going multiple days a week without any sleep at all, then so many of my issues would resolve 😢
Improving sleep is so fundamental!
I suggest looking at Dr Liptan’s book in the sleep section and bring that to your doctor. Some of us need help with more than one medication to get good sleep. For me a combo of three medications gets me decent sleep at last
May 8 ask what meds help? I use ambien for 20 yrs. Not working well now
I*
@@carolynturbett4747 For me it’s a combination : 50 mg Seroquel, gabapentin 600 mg, and low dose cannabis
I can so relate to the cat jumping on me - hurts like crazy!
I was part of newsgroups, even a research group, in the 1990's. Only now am I finding these new ideas.
Thank you for making these ❤ new to figuring this all out. Been confusing looking up online. I am no longer in college, so having access to evidence based research like before has been challenging. Ordered your book today ❤
So grateful for this information, thank you for your wisdom and care 👼
Glad it was helpful!
Fascinating!!!!! My fibro started after getting bit by a diamondback and actually ended up with compartment syndrome and they had to cut my arm. Then since I have had fibro. The info I got when diagnosed was very little and I have been stuck in that box since with NO EXPLANATION. Not have I really researched a lot because I thought it was just my doc not doing their job which I still believe but at least now I can understand things more.
Oh wow! Post-compartment syndrome pain scarring and pain can be intense. You should definitely consider myofascial release, which I talk more about in my most recent video czcams.com/video/__sNBnGpmJ8/video.html
Also Australia. Love your book! Your dietary tips do make a difference. Thank you
Hello Austalia! So glad my dietary tips are helpful!
Another Aussie here, I’ve ordered your book. I love your talks, it helps me understand this hideous disease. Thank you.😉
Sorry about missed the live event. Super interesting.just ordered your book from Amazon UK.
Awesome! Thank you!
I Need to Relax! I can tell! Thank You..This was really helpful! That is why Benzos help me..but I want to do this mySelf! 😊❤
You can do it!
Doc. Please, please, please a link to the Amazon page for your book. Both here and in the channel About section.
Good suggestions! Thank you
Hey Dr Ginevra! I love your book, it has been the single most helpful thing since my Fibromyalgia diagnosis a few months ago (mine was triggered by Covid in April 2022). After watching your videos I was curious if vagus-nerve stimulation could be a potential treatment for fibromyalgia as a way to boost HRV and decrease "fight or flight" at the top of the chain. I found a few studies in the early stages to test this, do you have any thoughts on if this could be a potential future treatment? Thank you!!!
I am so glad my book has been helpful! Vagus nerve stimulation has a huge potential to help in fibromyalgia, both for the boosting parasympathetic nervous system levels and reducing inflammation. I was speaking to a researcher who specializes in this area at a conference recently and she said that the challenge is that the vagus nerve is like a superhighway of information going back and forth from brain to body. Currently available vagus nerve stimulators are really broad stimulators, activate many pathways going back and forth and so can be hard to get the desired positive effects and can cause unwanted GI side effects. Research is focused now on how to fine-tune the vagus nerve stimulators to get the desired effects, but minimize the side effects. So I think this could be very helpful down the road but not quite there yet.
OMG the vagus! I walk barefoot in the snow, it improves saliva and mucus for Sjogren's, and gives me relief from pain (by having the pain sensation overridden by the cold) for a few minutes.
Oh wow!
Where’s your clinic dr ?! At what State ??!!
Thank you for the work that you do!
Question: Do people with fibromyalgia have a higher rest pulse than people without fibromyalgia? Since they are always in fight or flee mode.
I hope someone finds a cure for fibromyalgia because it's real. It's sad how doctors haven't taken this mystery illness seriously until recently.
A few studies on fibromyalgia have shown higher resting pulse in fibromyalgia, but the most consistent finding is actually abnormal heart rate variability.
Watching replay. I had a doctor last year tell me it was a throw away diagnosis. A diagnosis doctors gave for symptoms they couldn't find a real disease to attach the symptoms.
That doctor needs to get with the times!
Yes clinch and tight all the time. My Apple Watch lets me know how bad my sleep is
Muscle tension and sleep issues are such a huge part of fibromyalgia pathology!
Can a stellate ganglion block help in calming down the intensity of pain?
I have seen stellate ganglion blocks help localized pain in neck, chest, arms but not with overall fibromyalgia pain.
Bought on Kindle yesterday. Brain fog is bad lately. Is there an overlap with being neurodivergent?
i get asked that question frequently! In my clinical experience yes, but I am not aware of any studies looking at this, but hopefully will happen in future. Go directly to the chapter on brain fog!
I have Fibromyalgia for almost 30 years.
I live in the middle of LA and never found a good doctor to treat me.
HELP!!!!!!
Can you suggest any docs?!
Finding good docs can be such a challenge! I have some guidance on this on my website drginevra.com.
If you have insurance you could get telehealth appointments with a specialist of your chocie?
Dr can you make a video presentation about location of the points in the body in fibromyalgics . Do it whith a real person , please . Thanks
That's a great idea! I will add to my 'videos to make' list.
Mind body work, tms ??
I think mind-body work can be very helpful. In my opinion what Dr. Sarno's TMS diagnosis is describing is better described by emotional/trauma related holding patterns that lead to fascial dysfunction and pain.
Hi Dr. Ginevra, if you closed your fibro clinic are you more focused on research. I have nursing degree and MPH, I would like to collaborate with you on your research?
I am still figuring out how to best go about doing research, will keep you posted!
Great idea. A video update with transcription would be great. CZcams transcribes, but calls it subtitles.
The automatic transcription from CZcams should be available on the video now.