New Research Reveals Role of Immune System in Causing Fibromyalgia Pain: Update #1
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- เผยแพร่เมื่อ 24 มิ.ย. 2023
- New immune research sheds light on the cause of fibromyalgia pain. I describe how in this video and in my medical journal article “The widespread myofascial pain of fibromyalgia is sympathetically maintained and immune mediated”. You can download it here
authors.elsevier.com/a/1hCZg4...
The mouse antibody study can be found here pubmed.ncbi.nlm.nih.gov/34196...
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. I share my complete treatment approach in my book The FibroManual amzn.to/3Uql7wg
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/
I was not sexually abused as a child, but I was heavily physically and emotionally abused to the point I could never relax because I never felt safe. I feel this left me vulnerable to having fibro.
Any kind of abuse or trauma endured as a child can definitely be the trigger for development of fibromyalgia.
yes. very tired of this statement. the best lecture and research I have heard is from a pain researcher in Utah who has narrowed the syndrome down to 5 co-occurrences including an upper cervical injury.
please stop this gross misnomer correlation is not causation. @@DrGinevra
I'm so sorry for what you've been through.
I speak with so many patients like you who struggle with pain and can't get the help they need and deserve. For many, especially those suffering with pain, the doctor patient relationship has become adversarial. People who've already been victims of abuse are now also victims of a broken healthcare system because of government interference in the doctor patient relationship. Because of that, I strongly recommend you do not make the abuse part of your medical record because, if you ever need pain mgmt, you'll very likely be refused.
I wish you the very best!
Yes, I believe childhood stress or abuse can trigger or maybe wake up
FM pain. If I get stressed my fibromyalgia pain kicks in. I hear about flares ups, does that mean it settles down, and then the flare kicks in, and how long can the flares ups last ?
Maybe it settles when the stress subsides, I’m newly diagnosed but have had pain on and off for years. Thank you.
I have double PhD in Genetics and Systems Biology and I also have had fibromyalgia for over 25 years. I never ever doubted autoimmune component of fibromyalgia and have been researching this field fiercely. So, let me add a few cents here. There have been a few small scale studies confirmed connection between fibromyalgia… and insulin resistance! And even smaller study on metformin for fibromyalgia patients. Using only 250mg daily all patients have seen significant improvement in their pain level. So, I ask my physician for metformin and she prescribed it to me a few months ago. It made huge difference! I’m also doing Keto diet and I drink vinegar before each meal to keep blood glucose steady. And no, I’m not diabetic or pre- diabetic and both blood glucose and A1c are normal in my case. However, I do have insulin resistance and many of fibromyalgia patients probably have it too, without knowing.
Practical tips:
1. go low carb or Keto or carnivore and see if it helps
2. Drink one tablespoon of apple cider vinegar in large glass of water. I add Celtic salt to it and a few fresh slices of ginger - it tastes ok. I also use carbonated water.
3. Ask your doctor for metformin. They will do blood test anyway, but the point of the study was: fibromyalgia patients had normal levels of glucose and A1C yet they had insulin resistance
To the author of this fantastic video: please do a video about insulin resistance and these studies with metformin please. As many of you know, the anti- aging community take’s metformin because it’s been linked to longer and healthier lifespan. But in our case it could mean getting back to normal life. As it was for me.
Thank you. I'll look that up. I'm sick of being in pain.
I was pre diabetic so I went on a keto diet. Yes, yes and yes it cut the pain! I also retired at the same time so my stress level went way down. Also it was the time that CBD came out and that stuff would instantly cut the pain. I think all three helped me. I would say I am 95-98% pain free. But most of all prayer. Each person is different and only God knows the way to each person’s relief.
Thank you for sharing your story! After the first metformin studies came out I tried in on my patients and no one had any benefit! But they didn’t combine it with keto diets. I will do a deep dive into the metformin/insulin resistance in fibro research and plan to do a video. So glad you found some things that helped you!!
Keto and carnivore diet can get your blood sugar lower but it doesn't treat the root cause. There is so much good information that these diets are terrible for you! youtube.com/@PlantChompers?si=GB5_x_9KlDn6Ge54
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I remember, many years ago, telling a doctor that I felt like I had 50% more nerve endings than a normal person. Over and over, I'd have a procedure and the doctor would say, "I've never seen anyone have so much pain from this." LIke, what, I'm making it up? Trust me. I LIVE with pain 24/7 and most times nobody knows I hurt. I'm GREAT at coping! It has been so validating to learn that I wasn't all that far off. I don't have more nerves, obviously. But the nerves I have are a whole lot louder than they should be.
Christine Bravo Mom, all my life doctors have told me they have never seen a patient that has such a low pain tolerance. 57 yrs. of this, so tired of it.
This is so validating. A few years ago, I had an ectopic pregnancy, which I completely dismissed as a flare up. I needed a blood transfusion and emergency surgery by the time I went to the hospital. Had I waited any longer, I would have died because my Fallopian tube burst. I am not a complainer. So when I finally go to the doctor and their only recommendation is diet and exercise, it is so frustrating and hurtful. When I expressed that my pain is getting worse, I was told that Fibro pain doesn't get worse. But how can that be when I've gone from being able to deal with it to questioning my quality of life over the span of a decade? I think mine was triggered by extreme stress at my last job and giving birth via c-section. That was when all of it started.
Unfortunately some doctors don't understand fibromyalgia well enough to know what is not fibromyalgia pain, as you experienced.
I've been living with fibromyalgia for over 20 years. My 40 yr. son was diagnosed with melanoma the summer after he had graduated from H.S.
He had 17 lymph nodes removed from his neck. Each member of our family was affected adversely by my son's illness. I started having headaches then the pain dropped down into my body where it has remained. The level of my pain varies depending on what's going on in my in my life. Stress causes pain. My flight or fight response button is broken and my brain is perpetually ready for the next disaster. But that's not who I am. I'm a positive and hopeful personality. So there's quite a conflict always going on. Fibromyalgia is a life changing condition but it alone isn't fatal. It limits normal activity and causes constant body pain but the severity changes depending on the stress in our life, the weather, and whatever else in our lives that has the potential to adversely affect us.
The medical community is still learning about fibromyalgia and the people we live with have a difficult time understanding why we can't do the things we used to do. And this lack of understanding is probably the most difficult challenge of living with fibromyalgia.
I've learned that living with pain can be done and sometimes it even can be an opportunity to become stronger, deeper, and more compassionate human beings.
Fibromyalgia is absolutely progressive, and anybody who says otherwise isn't actually looking at real patients! People have died from progressive fibromyalgia! I went from just being in constant pain but being able to deal with it with things like ibuprofen and Aleve to only opioids working to having to take Kratom because doctors abandoned all of us in the "opioid crisis". I'm not as bad off as my sister yet. She's confined to a wheelchair for months at a time. It's most definitely progressive.
Chest pain I such a normal part of my life, that I don’t know when to really seek help. I’ve been to the ER twice with chest pain. Once it was a migraine and the other we don’t know.
Now I’m afraid to go to the hospital if I have chest pain. Honestly, Just let me have the heart attack. Nobody believes me anymore.
My fibromyalgia was triggered by extreme stress too
OMG, this makes so much sense. So many of us developed fibro as a result of prolonged very high levels of stress or a traumatizing event, and apparently the sympathetic nervous system just never "stood down" afterwards....?? Going to start doing vagus nerve stim! Thanks for the info!
Yes extreme long term stress triggered mine too.
What is vagus nerve stimulation? I have had this illness for 30 years & have never heard of this- but would like to try!
Did you tried dr john sarno tms?
On TH-cam watch "Fibromyalgia: New Insights, New Hope" Parts 1, 2, and 3. Each video is about 15 minutes long or less, and a MD explains some of the research he and another MD did with FM patients using three different kinds of brain images they did on people with FM as compared to healthy people, and the major differences of brain activity or lack of brain activity between those with FM and those without. Also revealed Brain Atrophy in certain areas of FM brains, and a lack in the brains production of Dopamine which fights pain, and how that is linked to the Brain Atrophy. Also very interesting is the role the Hippocampus is involved in this. Do you have problems with your neck? See why some FM patients have problems with their necks and others don't. Are there two types of Fibromyalgia???
These videos left me with a lot of new questions.
This worked for me in 2 days!!!!!!! (I suffered 7 hellish years.) Magnesium L Threonate (must be that specific magnesium), Benfotiamine (type of B1), Vitamin B6 and Vitamin D3. No Rx needed...all supplements. It helped my sister in law too. Pain levels went from an 8 out of 10 to a level 2 out of 10.
What strengths/amount of each did you take daily?
My wife has a severe case of Fibromyalgia and considering how long she has it, it's incredible how little we actually know about it
I'm so glad I found this channel, I need to seat myself and watch as much as possible so maybe, one day we can help her get over or manage most or even some of her pain
Thank you so much for this info, we were getting desperate, we are living in a country where too many doctors don't even believe in Fibromyalgia , and the more helpful ones don't really have any information or any kind of help
I am so sorry to hear about your wife’s struggles. And I completely agree- I think medicine is least 50 years behind where we should be in understanding and treating fibromyalgia. That is why I work so hard to educate patients and doctors about it. Welcome to my channel!
I'm so glad you care what's going on with your wife's health! I'm all alone with my fibromyalgia. My sisterinlaw is in remission from cancer now going on 3 years, she's doing great. But everyone still falls at her feet, seeing to her every whim. As for me, they skip over my illness like it's not there, it doesn't exist. I hurt all over, everyday, all night. Have a lot of sleepless nights. Loud noises, loud tvs, riding in a fast car, etc., just kill me! But people can't see it, therefore it doesn't exist....to them. People who pray, please pray for me. I'm about to lose my house, because I can't work a 40 hour week.
@@janetphillips2875
I'm really sorry you have to deal with this alone, my wife is the love of my life and I found myself explaining her condition to her own family and mine many times since people just can't seem to understand it.
Let's hope that in the next couple of years there will be some progress in the field of medicine regarding fibromyalgia.
I heard that you can get some help from the government just because you suffer from fibromyalgia and therefore are unable to work. I have no clue of any other details though.
@@janetphillips2875🥰😘🤗sending love to you I struggle to I’m praying for you darling better days are coming soon ❤️💜❤️🙏
Very beautifully explained the concept of autoantibodies and immune complex. I too work on Fibromyalgia patients and totally agree to the point that there is a greater contribution by sympathetic overactivity and muscular tension to Central sensitization.
I am so glad it resonated with you!
Should I be getting massages on a regular schedule or periodically?
@TheBubbabutler63 my Dr told me once a week
My dad had lupus and fibromyalgia. I have fibromyalgia , POTS and was diagnosed with these and osteoarthritis in my 20’s. I also have CPTSD and I have been stuck in fight or flight for almost my entire life. Im 57 and its getting so much worse, the pain and the stiffness.
Also, love your book. Im reading it now for the second time
This is fascinating. My doctor is quite phenomenal. He said that my fibro is most likely the result of the cptsd I got from my marriage. He said that if I get that cptsd "fixed" I might get my pain go away. And yes... After years of getting away from stressers, fixing my mind and moving my body to release the stress, the pain just keeps getting less and less bad. Most likely it will never go away totally but I am quite content. Can't work, need to meditate and be in the nature a lot so my bank account takes hits but I am loving it😊
I am glad you have found a great doctor! Yes anything that reduces the impact of trauma on our body and minds can help ease symptoms.
Thank you very much for making this video. I was diagnosed 30 years ago and have definitely had lots of ups and downs and I have seen new theories come and go. I am thankful for the research and progress. Now that I am in my early 60s I have challenges associated with my fibromyalgia that have made it difficult for me to to continue to work. I’m glad I found this video, and I will look for more of your content.
Glad it was helpful!
Great video. I’m a man suffering from fibro. When I first presented to my rheumatologist she was very skeptical because she said that “men just don’t get fibro.” Afters years of (in my opinion) needless testing it was finally acknowledged as fibro. My life is so painful. Cymbalta worked for a month and then pain came back worse than before =(.
I am saddened - but not surprised - by your rheumatologists response. Men definitely get underdiagnosed with fibromyalgia, and treatments work differently. Most fibromyalgia studies are done on women. This is an area that really needs to change so men can get more accurate diagnosis and more effective treatments.
@@DrGinevra well I've found out why I have fybromyalgia I've had undiagnosed Asperger's Asperger's linked to add and heds had I've had CFS before for me the trigger was a fall though I now no I had SPD as a child.dr lenz ADHD 80 percent people in spectrum have fybromyalgia CFS or migraine
Hi, did Cymbalta wake you up at 3 am, no matter when you took it?
@@janetphillips2875it does for me.
My doctor recently suggested SAVELLA, a new Fibro med that is FDA approved, specifically for Fibro PAIN! I'm seriously considering it, since my pain has gotten much worse due to trigger point injections aggravating my nervous system, instead of calming it down as was the expectation... 😢 My hesitation, besides more side effects from more meds is that my goal has been to get OFF as many meds as possible! But so far, the doctor keeps adding them... 🤔
Have any of you tried it or are you still on it? Please let me know what your experience has been with Savella or other meds you've had success with!
Thanks so much! 🤗
Without doubt fibromyalgia is linked to the immune system. I have it and also have an autoimmune problem. On days that it flares up I know I have triggered inflammation in my body either with certain foods or with heavy exercise.
Agreed!
I'm not sure what I have but this sounds pretty near as sometimes depending on what I eat a burning and pain in most of my body parts it's very terrble
Great video...I have a friend with fibromyalgia and her Dr's said is that in her head.😢..nobody believes is a real thing...I love your Fridas..❤😊
She needs to fire her Dr.
I know the feeling some of my docs don't believe me to this day, 😮
She needs to find a Dr who works with fibromyalgia patients, and pain managements.
I was diagnosed with fibromyalgia in 1984 after falling sick with a "mono-like virus" and post MVA 1981. Fast forward to a second MVA 7/2018, I have been been told so many times I just need to exercise more and lose weight. I am on citalopram and pregabalin which help somewhat but still suffer so much. Thank you so much for your research ❤
Epstein Barr virus? Me too. About 4 yrs prior to fibro symptoms.
@@jackielobin7100Yes me too. I was also under extreme stress for a long period too.
My doctor was just telling me about this a couple months ago! Not in this much detail, but it's good to know she's staying up-to-date with the latest research!
That's encouraging to hear!
Thank you so much for all that you do! I wouldn’t be where I am today without finding your book. I was at the chiropractor and I explained your working theory about fibro being rooted in a fight or flight response getting stuck in on, and he was like oh yes, that’s absolutely you. I think me explaining this to various doctors has helped broaden their empathy towards fibro patients.
I had to deal with my bad overbite with orthodontia to deal with my grinding and resulting headaches. That in conjunction with Botox on migraine trigger points has been a game changer. It’s like being stuck in fight or flight exacerbated my grinding, and my sensitization was so high that it was a terrible feedback loop. My face was practically locked in a grimace before botox. I really needed to break that loop so my nervous system could calm down.
I just want to tell everyone new to having fibromyalgia not to lose hope. Keep fighting.
I am SO glad you were able to break that feedback loop and find improvement! And that you are educating your doctors. It sounds like you have a good chiropractor 👏👏
Your book has helped me so much. Recently I started using red light therapy and it is helping me immensely
All my fibromyalgia pain left after trying carnivore. 8 months so far and no more pain. Among other amazing results. No longer pre-Diabetic. Lost 35 pounds. And more.
I never had fibro but I often had lots of joint pain + all sorts of other issues too (as in gut issues, etc). All the joint pain went away on ketovore. I mainly live on grass fed beef × lamb with a small amount of fruit ( organic prunes). But if I would be eating the stuff most people do I would be in so much pain I wouldn't be able to walk. Its alk food related! Or what's ON the food (pesticides, etc). I also have hEDS, autism, corn allergy. Dr Stephanie talks about the importance of avoiding pesticides (esp that glysophate) because they affect the microbiome and the microbiome is our health!
Fantastic for you!!
You are vegan??
I was vegan off and on throughout my life. Now experiencing carnivore lifestyle. Feeling so amazing for 58 years old! Just fit into my size 6 jeans yesterday! @@mediteran4252
@@sarahb.6475 yikes! a mostly all meat diet sounds awful. Not exactly great for the human body or the planet.
Thank you so much for this video, my favourite thing about your explanations is they seem to constantly contextualize observations I've made about how my own body seems to function. I'm so thankful for the work you do, as it really helps inform me on what the root causes of my own bodily dysfunctiona are, and how to address them.
I can't wait to see what kind of things are happening next with these discoveries, it may suck to have something rare and difficult to treat, but man is it cool to see research align more and more with my lived experience, especially when I compare it to the information that was accessible back in 2017 when I was first dx'd.
I am so glad my work has helped bring clarity about what's happening in your body!
Thank you, thank you, thank you. This explanation is so helpful. I have never been able to understand why stress, both physical and/ or emotional can leave me crumpled on my bed with pain in every square inch of my body. I also helps me to appreciate why it can be a slow recovery with exhaustion. My first memory of this pain was following a scan with contrast. The pain hit with infusion and never left.
I am so glad my explanation is helpful! That’s really interesting that your symptoms started with contrast infusion.
I had fun pain, the doctor said do an mri, said there's a dark patch in my lungs, ordered a ct scan the next day after the mri, and found my lungs were clear, thank God. The pain in my upper left leg joint started right away after that and travelled down my leg and I was diagnosed with fibro after 6 months. Could it be the excessive contrast that caused my fibre or the numb terror of the doctor and scan experiences? Also it was covid times and I had elderly patients who I was so worried about, and a husband who was acting weird and in trouble. But I've always wondered if it was the contrast medium that they used in the scans.
I had back pain not fun pain.
I'm so excited to finally hear more about this. I remember when the mouse study first came out and it seemed like there was nothing else I could find about it. This is all fascinating and I hope this leads to better treatment options soon. My question is this. What are your thoughts on the side effects of the medications used to treat autoimmune disorders? I've not had any luck w/the current meds for fibromyalgia, in fact I've had some very unpleasant side effects which lead me to be concerned for future treatments. TIA for your response. I'm so grateful for the work you are doing that helps us Stay Fierce!
I think it depends on what types of autoimmune treatments end up showing benefit in fibromyalgia- some of the newer treatments don't have many side effects. Stay Fierce!
@@DrGinevra thank you so much for your response. Looking forward to hearing about new treatments in the future 😉
The pictures on the wall behind you, especially the one on the audience's right, are enough to make my stomach "drop" and make me check for exits!
Having lived with such experiences for decades, I now know that this is a symptom of activation of crisis management response in the "reptile" part of the brain. No technique tried to date are able to prevent activation, the best I can do is recognize what is happening and just give the body the time and safety to diminish the symptoms, or rather how I react to the symptoms. There is no way to reduce adrenaline's effects on muscles and nerves, especially not long term, but understanding and accepting that this is going on helps to stop the spiral of worries before it escalates the initial activation.
Yes.. the picture on right baffles me at the least
You are my voice when it comes to speaking what Fibro means for me. Thank you! Don't ever stop researching - you are the an invaluable asset to the community that can't be replaced.
Thank you so much for those kind words. It means a lot to me.
Mononucleosis - I believe, was my downfall. I was in junior high school
I’ve never been the same again
I completely agree. I had mono (glandular fever) at age 17 and have since developed Meniere’s syndrome and fibro. Also had Lyme disease a few years ago. I believe that the Meniere’s and fibro are linked to the glandular fever.
@@feef4813 sorry you’ve had so many issues. I can not even begin to tell you about the health issues. The most infuriating Medical issue I experience is relaying new symptoms that I had never experienced to only be told it’s referred pain n blame fibro. It took years!!!! To diagnose my brain tumor, it took months n months to get my gallbladder removed AFTER the stones were everywhere because…fibromyalgia. And now, ZERO effective pain management because people buy illegal drugs off the street and die. Good Luck, stay strong and be your biggest advocate
I was the same , mono , and I got worse over the years .
This is the best explanation of what happen in fibromyalgia.
wildly interesting!!! Thanks for sharing this information!
This is such a helpful understanding of what is going on!
Congratulations on the journal article!
Thank you 😊
I don't understand where the inflammation factor comes in when my inflammation levels have always been very low and my doctor said that is normal in patients with fibromyalgia.
The standard tests used to measure inflammation are usually normal in fibromyalgia. Other tests used mostly in research are abnormal. To learn more check my book The FibroManual!
Ive ran very high infammation showing in my blood tests for over 10 years. I now have NAFLD and Fibrillary Glomerulonephritis. No clue if they can be related however we STILL cant find the cause of the chronic inflammation and it seriously has me in a bad way. I have always thought this as an autoimmune disease. Would love so much if anyone could offer ANY info or advice regarding any connection with fibro and chronic inflammation. Sending you all gentle love and hugs x🌹
My hypothesis (I’m not a doctor so take it with a grain of salt) is not that actual immune response (interleukin-6) but the way the IL-6 altered the nociceptors.
In laymen terms IL-6 are the messengers that trigger inflammation. After prolonged periods of the messenger yelling to danger all over the body for it to hit the pain button to send to the brain. They eventually get so tired they just randomly hit the pain button lol.
It’s really great to see someone bringing all the research together. I always felt that one theory alone never explained everything and I’d get really frustrated at the fights in the research community. I would be interested in your take on some of the ME/CFS research and long Covid research. I recently tried a low PRAL diet after the citizen science long Covid community got enough citizen evidence together to prompt research into chronic acidosis as one of the puzzle pieces in long Covid. I was dubious because my diet was already quite low PRAL and I only needed to make minor tweaks. For me these tweaks help. I’ve had fibro and ME/CFS for over 30 years but it took 20 years to get a diagnosis. Covid and long Covid for me presents with very high pain and extreme muscle weakness alongside other symptoms such as extreme fatigue and PEM. On one hand I don’t really care what’s causing the pain as long as I can return to function and manage in a sustainable way (Eg lifestyle, diet and medications which don’t do further damage in the short or long term). But I also find it fascinating when more puzzle pieces are revealed and the totality of my symptoms are further validated and explained. I also get a lot of help from things which involve the vagus nerve such as singing, breathwork and yoga practices. I will have a read of your book. Thank you!
I read your book it’s awesome and very helpful I do all you suggest and I am better. The Lyrica has helped me sleep and my night pain is better thank you so much
Thank you for sharing your findings, and explaining in depth 🙏
My pleasure!
Thank you so much 💜🙏. I feel so hopeful with your help.
So glad!
I wonder what the mouse had to go through for this exciting new research?
I don't think the mice were as excited by this new research. I wish there was some other way to learn about disease that did not involve animal research.
@@DrGinevraThere is. Computer modelling, human volunteer…
Using animal test subjects is evil.
EXACTLY. I would much rather continue my own pain, my own journey, than subject AN INNOCENT CREATURE to any torture to aid my own healing. This is NOT what human beings should be about. We are intelligent enough to find another way. SHAME ON THE HUMAN RACE
Yay! Perhaps fibromyalgia is linked to Autoimmune Disorders!!!!
Yes, but how many years will it take to get this approved by the FDA, AMA or whatever government dept is is charge. Until it's approved as Auto-Immune, our insurance won't cover it as such and doctors won't use treatments as such.
We've all known this to be true for a long, long time...but legally doctors still cannot treat it or identify as auto-immune. SAD!
Thank you! A complex and emotionally difficult topic examined and explained clearly.
Glad it was helpful!
An amazing video i have been very interested in the autoimmune disease research since reading it last year. I will rewatch this a couple more times for it to sink in though i am also really enjoying both of your books.
I am so glad you are enjoying my content!!
Thank you for making this understandable.
Glad it was helpful!
In my case, I first became ill with extreme fatigue and weakness for a period of time and eventually paralysis in my face, which thinking I may have had a stroke, led me to a hospital emergency room. Once I was examined at the hospital they did a scan of my brain and found I had a brain tumor. So along with muscle weakness and the brain tumor they admitted me to the hospital and conducted further testing to determine I had developed Guillain Barre Syndrome, which was causing the facial paralysis and weakness. I remained in hospital for 10 days and received IVIG treatment and after a few months of recovery had surgery to remove the tumor. I continued to have chronic pain issues and other symptoms and was eventually diagnosed with Fibromyalgia. Your explanation of Fibromyalgia fits perfectly with my case.
Hi Annette good afternoon just came accross with your comment here. I just wated to check the paralysisin your face doeas affect your teeth and gums too? I’m having the second facial pain from 3 days agobut this time its more painful and everyday there’s another pain i feel like in my ear, followwing day mirgraine then today my hand arm, leg left side and breast only more painful in my leftside even left side throat is painful. I am not too sure weather i go and see my rheumatologist or not😢 so from head to too its painful
I was diagnosed fibromyagia 3 years ago by the way
love your art in the background- healing therapy.
Glad you like the art! Some viewers definitely don't like it, but to me it feels important to show a visual representation of what fibromyalgia pain can feel like.
Thank you- so well explained and easy to follow.
I find when I have a flare up I stay urinating alot- is there a reason for this?
This really helpfull. Thank you for your video.
I'm so glad!
I was giving up any hope of there being a doctor who has fbm! Finally a doctor who can SYMPATHIZE!!!
Amazing work this makes a great deal of sense.
Thank you! I am so glad to hopefully add more clarity to our understanding of fibromyalgia.
@@DrGinevra so grateful 🙏
Thank you so much for your intelligent video. This is everything I go through. They keep telling me it’s from my back. The muscles in my body contract and hurt on a daily basis.
You are so welcome! I hope understanding what's happening in your body will make it easier to find effective treatments.
Thank you so much for all this excellent information. I want to forward it to my doctor. You give me hope and I appreciate all you do for the fibromyalgia community.
I am so glad you are finding my content helpful, that makes me really happy!
You give me so much hope. So grateful you have more time to research and advocacy. Any updates to your “Medications/Supplements to Improve Sleep” list (page 254) in your book’s Appendix? THANK YOU!
Stay tuned! A part of my Summer Book Club I am going to be doing some topic updates, and sleep is one of them.
Stay tuned! In my Summer Book Club I will be doing some TH-cam Lives with updates on various topics from The FibroManual, and sleep is one of them .
Thank you! This completely explains my last two years of extreme pain: trauma meets fibro meets si joint disfunction and an accident that tweaked my SI… immediately following therapy from which I came out slightly dissociated. I have fistulating colitis so am on Humira and Lialda: they have not helped. Now trying Savella one week in. I’m hopeful. Worried about the heart damage side effect of Savella.
You have had so many challenging health issues all at the same time, I am sending you healing energy and hope you find more effective treatments soon!
Thank God for you!!!
Living in Canada, physicians up here will not acknowledge the role of the immune system in fibro patients. At least this has been my experience. They’ve put more effort in solely blaming the nervous system than acknowledging this is a complex disorder. It has been my experience the focus is on gaslighting you into the fact that it’s all in your head so the only action required on their end is to write script after script for anti depressants. I will say universal health care systems are not built to deal with these types of issues, unfortunately that doesn’t help
Me. This is an incredibly disabling problem, and the lack of pain control, lack of support, and lack of validation from the health care community only further contributes to this being a chronic problem. I can only hope one day this condition is taken seriously and better pain control options along with root causes are identified. Good luck to everyone out there having to deal with this.
Love your work and am so excited for what youre doing.
Are you playing with autoimmune treatments or do you have an article anywhere about potential treatments in light of this info?
❤
Early thoughts are things that reduce antibody such as IVIG or rituximab. But definitive treatments won’t come until we know the full picture of the immune system’s role in fibromyalgia, which will take a lot more research.
I am on Remicade infusions every 6 weeks for Ulcerative Colitis. It has helped with that, but I have not had any reduction in pain or other symptoms from fibromyalgia.
My endocrinologist thinks the Remicade has helped with my Hashimoto’s.
Everyone is different though. Hoping they’ll come out with some new treatments.
Thank you so much for all your research and information, Dr. Ginevra
Thank you Dr Ginevra for you, your book Fibromanual, increase my understanding of fibromyalgia 10 fold. Thank you, Thank you, Thank you!
I am so glad it was helpful!!!
Thank you for this informative video. This will help me explain fibro easier.
Glad it was helpful!
I have hashimotos, similar symptoms to fibromyalgia. Diet very important.
How disappointing that you didn't leave your article available to those of us who has stumbled over your channel later than Jun 2023. I generally stay on top of fibro research, I've only been dx'ed with it since the mid 90s. My pain plus a very messed up back with 3 compression fx's, bulging discs, stenosis, the whole ball of wax. I would have loved to of been able to print your information for my new CNP. It's always a disappointment when people seek to make a buck off of other people's misery. I'm an old nursing home nurse. I've been kicked over bedside tables by mentally ill patients in my early years of work but I still managed to work 40 yrs. The list of meds doctors have tried me on to manage my pain and chronic insomnia, how I would LOVE to get all all these meds that don't even get my pain under a 7/8. Distraction/staying busy only works so well for so long. Yeah, sure would have been nice if you could have left your article for people. Some of us need to SEE and read, not listen and hear. Because as you should well know.....fibro and brain fog go together hand in glove.
I wish the article was still free as well, but unfortunately that is determined by the journal , not by the author.
Your lecture makes perfect sense. I hope you were able to share your conclusion about the research article with the researchers. Calming the sympathetic nervous system is important. I use clonidine patches & tablets in my practice. Even when fibromyalgia is not part of the picture.
That’s so wonderful that you incorporate calming the sympathetic nervous system into your treatment approach! I have tried to connect with the authors of the research study, but no luck yet. The way medical research happens these days is not really designed around collaboration, unfortunately.
It makes so much sense that at eom3 point in the last decade, i did something (or many eomethings) that made my sympathetic nervous eyetem tell the .... auto antibodies (i think, i'm so tired) to stand down a great deal. The last 5 years of the last 10 I have worked out consistently the chronic fatigue and over exertion have been eo muchvworet than pain and knots.
This is incredibly exciting!
Are you going to do an update of your book? I’d love to see that. 😊
That’s definitely something I want to do as well…Stay tuned!!
Very interesting. You might want to consider transient receptor potential channels (TRP) since they are multi sensory channels for temperature, mechanosensation, pH, drugs, toxins etc. about 40% of FM patients test positive for small fiber neuropathy (SFN) and mutations of TRP channels can cause this SFN. The DRG is a prime location of these channels since they are essential to nocifibers however TRP channels are on all types of neuronal and non neuronal cells. Eliminating TRP agonists from consumption can help a lot.
This was a great video. So, my question is what does an 80 year old look with this condition compared to someone who does not have Fibro?
I am glad you liked it! The way I think about fibromyalgia and aging is that it does seem to hit us harder, but with age we also get more wisdom about what works for our bodies…
I went on keto diet and started walking and my fibro improved
I have been in pain management for fibro pain as of 2003. And I have multiple autoimmune issues.
Thank you for your dedication to fibromyalgia research! I have fibromyalgia, lupus and Dercums disease (adiposis dolorosa). Was on steroids for lupus for over a decade and once I came off, I noticed my fibromyalgia worsened significantly. Maybe it was treating the autoimmune component of FM? Pain and stiffness is quite severe, had to quit working as RN. Do you see prednisone being a tx option for FM in your opinion?
I think prednisone could be useful as a short term pain option but not as an ongoing daily medication due to severe side effect of long term steroid use.
Hello Dr G, I'm loving your series on fibro. Do you have a section on flare ups?? Thanks
I am glad you are enjoying my content! I don’t have a video addressing flare ups yet, but it’s on my list!
mine started straight after i had my hysterectomy over night i was on the floor and never got up again i have tried everything in the book
I have study published in 2000 Journal of Musculoskeletal Pain. It did find a great majority of fibro sufferers did get after a hysterectomy.
@@jewelleryaddict that’s very interesting doctors are so set in their ways regarding fibro I won’t budge on when mine started because it’s absolutely true god bless you for your study it’s so needed for all sufferers ❤️
After 30 years of nothing making any difference, a ketogenic diet has got rid of 80-90% of my pain and stiffness, the brain fog, the sleep disturbance and fatigue. If I'm stupid enough to eat sugar or starches, the pain is back within 12hours and it takes 3 days to get rid of it again.
How long after starting your diet did u see improvement
@j.n378 I saw improvements in blood glucose in 3 days, pain within 5 days, got off my blood pressure meds in 7 days.
I was just diagnosed with fibromyalgia and rheumatoid arthritis I can’t take it anymore. My life really sucks and I’m taking so many over the counter medication my stomach always hurts.
I hope you can find a good rheumatologist soon to help you manage your pain, sending you healing energy.
I was too diagnosed with fibro many years ago and RA last year. I got food sensitivity tested. I stay away from all the foods on the list. I have gone 80% carnivore, no seasonings, condiments or processed food and limit dairy to 1 cup of coffee, water, vitamins, exercise every day, i lost 30 lbs and have been reading the book The Myth of Normal by Dr. Gabor Mate for traumatic and emotional healing. All the RA drugs made me worse. I also meditate, pray.
I feel so much better these days. The diet is hard but not as hard as being crippled up every day, and if I eat something bad I pay for it.
I'm on 10 mg prednisone once daily, gabapentin twice daily and Tylenol arthritis as needed. Hot shower if I stiffen up. Being grateful and positive has helped tremendously.
A stressful birth with ventuse started my pain. 26 years ago . Only got diagnosed 4 years ago. I had childhood trauma too
You should come to Pain Week 2024 in Las Vegas. It is at the Cosmopolitan first week of September. It would be amazing to hear your lecture there. You will reach so many providers that manage FMS.
I spoke at Painweek in 2019, it was a great experience!!
It’s a horrific disease. As a man who’s had it now 21 yrs I’m so tired of it.
I have a tethered spinal cord at L5. We tethered cord people are often misdiagnosed with fibro. But now I see fibro as a symptoms of TC.
Could this be true too for Lyme disease symptoms too.
Stress sets it off. Or illness. Or even a bump on the hand.
Good morning Dr.Gineva!❤
My name is Roxanne...from N.W.WaState
In listening to You speak about sympathetic nervous system..and the fight or flight response...an idea struck Me and I d like your expert opinion.
I now know for Myself that when it comes to fight or flight ,I fight...having been ambushed by a knife weilding Preditor as well a couple other surprise situations(not sure if that really matters,but along with that have always had a great immune system..and still do.I am rarely sick.
However I spent many years working physically hard and with alot of overkill(i loved my work!) Also Obese the majority of my Life..always strong and muscular(not as much now that Im not working and am 60)
What Im wondering is...the role emotional trauma might play...as We tend to carry those things with Us ????....I would be very.greatful to hear your opinion..if You feel this idea may be worthy of an opinion.
Thank You and I appreciate Your research!❤
Emotional trauma can absolutely be a trigger for the chronic fight or flight activation in fibromyalgia!
Thank you for doing this video.
You are so welcome!
Dr Genevra, I have this question: Myself having a diagnosis of fibro, could drinking black tea beverages
such as Chai negatively impact my condition; I am wondering if it’s best avoid caffeine. I appreciate this new update if your findings and I am needing to replay it a few times to help me bind your info to my memory😂(considering Fibro brain fog). All the Best with your ongoing research efforts which is truly beneficial. Thank You!
Some folks with fibromyalgia don't tolerate caffeine well , but most do okay with caffeine in moderation, and definitely avoiding caffeine within 8 hours of bedtime is key to avoid sleep interference.
I don’t tolerate caffeine well at alll. It’s a no go for me
It sounds like some kind of SNS depressant and a muscle relaxer could be really beneficial for people with fibromyalgia.
From what I have gathered as a fibro patient is that some triggering event sends our SNS into something like a state of shock, and that overreaction causes fibromyalgia. For me, it was years of abuse, trauma, and untreated mental illness. So, with my limited understanding of the science behind it, it would seem that if we could calm the SNS down as well as treat the myofascial issues, we would see improvements in fibro symptoms.
My inflammation marker were triple what should be. My gp said "mid line lupus" that was 25 years ago. This explains why we get so sick from regular viruses. Diagnosed w fibro
I haven't had a doctor do a single thing for my fibromyalgia for TEN years. I have to take boatloads of Kratom just to halfway function. I'd be so blessed if doctors wouldn't have been intimidated by the fight against opioids. Now instead of being able to function pretty well, I'm just horribly tired all the time, because the only kratom that works is the red, and that is so sedating. Nothing else works, not even CBD. There are a lot of people in excruciating pain, and I have no doubt that tons of them have committed suicide because they were abandoned because doctors feared for their own skin. We are the Left behind. I truly hope that this can motivate some doctors to get back into helping us. I am officially disabled and unable to work because of my fibromyalgia my
So many patients are in a similar position.
Without Kratom, I’d have no quality of life . In small doses it’s stimulating enough to fight the fatigue . Larger doses for pain .
I was using Kratom for a very long time, it's the alkaloids that give the effect, well apparently other alkaloids in other foods trigger fibro. I did the carnivore elimination diet, I found relief that no pain medication could ever even come close to. Reintroducing food, I found that the only thing aside from animal source food that I can tolerate is some spices like garlic powder, onion powder, and white pepper, coffee, stevia, avocados and mushrooms... that's it! 😕 the only dairy I can tolerate has to be sourced from A2 casein Jersey cows, goat and sheep... I already knew that I can't tolerate the alkaloids in any nightshades because when I eliminated those, my skin disease hydrodentis supperative went into complete remission which is an autoimmune disorder as well, that's how I ended up on this path of healing myself. People ask me how I do it, and I tell them if you've ever had to experience the pain from either of these conditions, you would never touch certain food ever again either. Those few minutes of taste pleasure is not worth the pain consequences. I hope you find relief someday. 💜
I felt like that and I was severely short of Ferritin. My blood stores. It's worth you asking for a blood test.
Do you have any insights into the exact nature of the antigens, you mentioned damaged myofascial tissue, I am thinking GAD as well. I have a relatively high titer of anti-GAD which lead to a diagnostic of LADA. However I started producing insulin again last year. My titer is still very high for a simple LADA but not high enough for a proper stiff syndrome. Could fibromyalgia be something below the threshold of severe muscle contraction but still high enough to be debilitating? I also make the connection with the GABA i was initially given for treating fibromyalgia in the US. Any thoughts?
Great question! In the mouse antibody study they couldn’t isolate any specific antibodies, but instead found a wide variety of antibodies.I suspect lots of research is going to be done going forward to try to isolate specific antibodies.
I love how the VA no longer truly try and treat it and now I have td caused by. Phsic meds and as weird as it seems my fibromyalgia got worse where I have numbness in face and get dizzy for long periods of time if I bend over
I was told I had fibromyalgia by the doctor who named it. I have found antibiotics help my pain. I was diagnosed with brucellosis first almost ten years before fibromyalgia diagnosis. I took 3 months of different antibiotics and it hardly touched it instead of staying with antibiotics, I chose mega doses of vitamins instead and that did not help much but antibiotics does reduce pain value. I am taking antibiotics now. CT scan has shown I have lesions on spine and adenoma on right kidney. Waiting on cancer doctor appointment to get them biopsyed.
41:05 which antibiotics do you take?
I take nitrofurantoin, don't have cancer
My brother (diagnosed with ADD), one day told me he thinks I'm autistic. I had been wondering for about a year before that. The "professional" evaluation I did, showed multiple criteria that point to possible autism, but they said ridiculous things like, "She didn't display any repetitive movements." I was on a video call for about an hour with her. She doesn't even know if I have legs. I didn't even have a chance to tell her many things, because she kept asking me about past trauma & suicide. For the record, I have 2 legs, & one of my 10 fingers was jabbing lines into my arm the whole time she was seeing just my head & neck.
Meditation (especially before sleep) & gentle stretching of my muscles every day is the biggest thing that has any major impact on my well-being in almost a decade of suffering with an auto immune disease & Fibromyalgia. A change in diet has also led to gradual weight loss over a 20 month period & has definitely taken some strain off my body. TH-cam has a vast amount of guided meditations available for free. I believe it helps because relaxing the muscles before sleep is the key. Nine years ago the muscles in my back were so tight & painful with spasms that were literally like a knife & made me scream in agony, It still happens but not on a daily basis ! Being told to get out & exercise didn't help in the beginning because the moment i would leave the house (even now) the pain ramps up for a start so exercising /meditating at home works best for me. I've tried so many medications (pregabaline was the worst) mixed with all my other med's it tipped me into a catatonic state of non function. Last winter i didn't feel i wanted to live anymore to be frank...i was filled with anger, resentment & frustration, terrible as it was that was a turning point. I'm on min' medications & tapping in to all the natural self care i can give myself & it's working. My little bio permaculture/no-dig garden & an almost vegetarian diet, dance, stretching & meditation are making my life better. If things are not working for you...change them. I believe you're right Dr.Ginevra....this is the first research that makes sense to me as a sufferer....i didn't want to know about the mice but at least you are honest about it !!
Hello, I've been suffering fibromyalgia since I was 7, now I'm 46 and being searching help and can't find it. I been spending a lot of money on treatments and supplements that just work a little and besides that, uncle Sam stilling my money instead of helping despite working on my job. I been working since I was little and work has been a torturing hell in my life. Any help will be appreciated.
Thank you Dr. Ginerva for your research. I have been struggling with fibromyalgia for years. I also have Addison's disease, RA, osteoarthritis, and have battled through gullain-Barre syndrome.
My current doctor believes that fibromyalgia is a "junk" diagnosis. I have to quit a job that I loved 2 11:02 years ago because I could not physically continue. Do you know of a good dr I could see in northern California? I am willing to pay out of my pocket.
Definitely time for a new doctor! I have advice on my website drginevra.com about how to find a doctor near you.
Have you done any research into families with fibro?
Could this then provide some understanding of Dercum's disease nodules in those with both Dercum's and fibro?
Good question…. Dercum’s nodules occur in the fascia and are definitely associated with inflammation.
Interesting, my fibro first appeared after receiving a flu vaccine and a pneumonia vaccine at the same time. I coped with it for twenty years with pain killers then five years ago I got bit by a Lyme disease tick. After thaty fibromyalgia vastly escalated to where no medications help. My life is miserable, I only sleep when my body collapses and then I only sleep 3 or 4 hrs. I have to choose to face each day, who knows when I will no longer do that.
Your experience definitely reinforces the immune system involvement in developing fibromyalgia. Lyme disease and other major infections are a huge trauma to the body and nervous system and can be the trigger to developing fibromyalgia. The controversies around Lyme disease have really hindered research into effective treatments. I hope you can find some good medical help soon. Sending you fierce healing energy.
Just saw a video regarding lulu lemon leggings contsining pfas and the guy said it gets into your tissue and endocrine and lymphatic systems could thus contribute to fibromyalgia as well?
Very high stress. Hurting all over. Over activities.
how long does fibro last? I've had it 5 weeks and it's killing me. great video, so interesting, thanks.
Unfortunately fibromyalgia is a chronic disease, but there are treatments that can significantly reduce symptoms.
Explains so much...I have episodes where it feels as if my calf muscle is swollen on the inside...not visible on the outside. I thought I was crazy and drs. would look at me and my explanation of what it feels like as if I needed some type of psychotropic medication.
So glad my information resonates with you!
DJD, fibromyalgia, cervical spondylitis, Anklyosing spondylitis, Reynauds syndrome, anemia since birth, hypothyroidism, hypertension, sjogrens syndrome, bulging disc in neck and back, sciatica.....and I catch hell from family for even thinking about pain meds!
Why must they know?
What about the Vagus Nerve? Pituitary and Hypothalamus, etc?
I watched your zoom lecture discussing myofascial release, and how micro injuries to the muscle could cause this increase in antibodies... With this in mind, how is it that dry needling reduces pain?
Dry needling is done into painful trigger points to break them up, and that reduces the pain from the trigger point.
@@DrGinevra I see. It’s worked great for me, but I still imagine a surplus of antibodies created to heal the broken muscle fibers. Would love a video on this! I have a bachelors in nursing and also in biochemistry, so this subject is so fascinating, especially since I have fibromyalgia as well.
I have a question for you. Is it fibromyalgia in my mouth? I've been recently diagnosed with fibromyalgia. Two years ago I had surgery for dental implants. I have 12 titanium posts. I can't get my teeth put in because my mouth is so swollen and painful. I'm not allergic to the posts. The doctor says it's fibromyalgia. Thank you for your research I'm glad I found you. God bless you your help.❤
I had a patient with the same problem! Although it wasn't technically an allergy, her immune system had a hyper-sensitive reaction to the titanium posts. One thing that helped her was determining food sensitivities and avoiding those foods, as that reduced the overall inflammation in her body and in her mouth. I detail how to do that in both my books- The FibroManual and the Fibro Food Formula. Another suggestion would be to work with a naturopathic physician to explore ways to reduce localized inflammation in the mouth/gums.
I have extremely tight muscles. I take muscle relaxers. I have ramdon spasms. I also have disc problems too.
I always thought that my fybro symptoms had something to do with always being in flight or fight mode, and also like of vitamins and hormones too
Thx dr
Welcome 😊
Thanks for this. I've had fibro and M.E. for 35 years and my daughter's had fibro and M.E. with daily Migraine for 22 years. I've developed severe osteoarthritis in nearly every joint in my body and its getting worse all the time. I'm in so much pain now that I really dread the future. I know I have to stay as well as I can as I'm my daughters main carer. I recently had myofacial release but it only helped for about 1/2 hr each time. My question is why didn't it help more? Also is there a link between M.E./fibro, autism and A.D.H.D. as it seems to be running rampant through my daughters generation. So many lost lives.
Anecdotally I have observed that ADHD and autism seem to be more common in fibromyalgia but I am not aware of any studies/research supporting that. I have found that for most folks improving sleep quality first is necessary to get sustained myofascial release pain reduction. In my book The FibroManual the treatment program is structured to first work on Rest, then Repair with myofascial release. Also benefits can depend on the therapist providing the myofascial release, and their training as myofascial release is a broad term that contains within it many different styles/treatment approaches. I recommend the John F Barnes Myofascial Release Approach, can find therapist here www.mfrtherapists.com.
Had mono. Then mold exposure before the fms..maybe one of those keeping immune system messed up..