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.
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.
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.
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.
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 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.
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.
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!
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.
On RU-vid 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.
I was diagnosed with fibro about 10 years ago now, although I've had it much longer nearer 30yrs. I reckon. Anyway I'm male 60 UK. I was just reading your comment about neck problems, and yes I can agree with that. Here's how my neck problem started roughly 7yrs ago. I woke one morning and my balance had completely gone, I could hardly move my head without the vertigo being unbearable, it took several months for the vertigo to get better. I say get better, actually it never really has, I've put it down to the fibro in some way it affected my neck for no reason at all. I now have to sleep on my back always, to keep the vertigo at bay. Also now my head tilts to one side, I put this down to my brain adjusting for the balance problem, definitely another symptom of the dreaded fibro of which there are many many more. I might add that I've suspected fibro to be an auto immune disorder for a long time now, anyway the fog is setting in through typing here. I might add that my dad had lupus, for which I have been tested for many times, sometimes the test would say border line.. hmmm okay not full blown lupus maybe, but signs showing some sort of antibody problem may be the cause for fibro? Hopefully a reason and even better still, a cure will be found for this truly debilitating illness
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.
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!
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.
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
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 👏👏
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😊
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.
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 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 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 ❤
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.
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.
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!
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.
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!
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!
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
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.
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!
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
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.
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
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.
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.
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.
This is amazing, well done on the research. I think your interpretation makes a lot of sense. This was interesting to me as recently my doctor was looking into my chronically high neutrophils. I had a number of tests but no answers really apart from tissue damage, however I don’t have a recent injury or reason for tissue damage, the immune involvement of fibromyalgia could be the answer. I look forward to reading your book now, thanks again 😊
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
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…
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.
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 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.
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.
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.
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
I was diagnosed with fibro about 10 years ago now, although I've had it much longer nearer 30yrs. I reckon. Anyway I'm male 60 UK. I was just reading someone's comment about neck problems, and yes I can agree with that. Here's how my neck problem started roughly 7yrs ago. I woke one morning and my balance had completely gone, I could hardly move my head without the vertigo being unbearable, it took several months for the vertigo to get better. I say get better, actually it never really has, I've put it down to the fibro in some way it affected my neck for no reason at all. I now have to sleep on my back always, to keep the vertigo at bay. Also now my head tilts to one side, I put this down to my brain adjusting for the balance problem, definitely another symptom of the dreaded fibro of which there are many many more. I might add that I've suspected fibro to be an auto immune disorder for a long time now, anyway the fog is setting in through typing here. I might add that my dad had lupus, for which I have been tested for many times, sometimes the test would say border line.. hmmm okay not full blown lupus maybe, but signs showing some sort of antibody problem may be the cause for my fibro? Hopefully a reason and even better still, a cure will be found for this truly debilitating illness soon.
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.
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
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. 💜
@@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 ❤️
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.
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.
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.
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.
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. RU-vid 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 !!
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.
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.
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
Good info, thanks. But drugs are NOT the answer. You're off track. I've reduced my pain and fatigue by about 80percent (so far) over the past couple of years using lifestyle, diet, yoga, counseling, meditation, herbs & exercise. Drugs ALWAYS lead to more issues somewhere down the track.
All of the treatments you mention are super important too! Much of my book The FibroManual is devoted to making changes in how we move, eat, sleep and regulate our fight or flight nervous system to reduce symptoms.
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.
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 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.
@@thefibroshow something I’ve questioned I had 4 children, natural childbirth - other than illness, can the pain of childbirth play any part in fibromyalgia? I had mono in jr high but wasn’t diagnosed until after my youngest was born. It was so debilitating I couldn’t hold my baby. I still struggle to comb my hair it’s been well over 20 yrs at this point n now the doctor says I have long covid. What in the world??
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.
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.
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.
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!
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!
I had a study published also in the Jouranl of Musculoskeletal Pain.I still believe that the pain is from something most likely in the brain that amplifies the pain in the muscles. Most likely involving the HPA axis.
I am interested in hearing what was your published study about? There definitely is robust evidence that pain amplification is happening in the brain in fibromyalgia. The newer piece we are now learning about is the role of the immune system in generating that central sensitization. My theory is that it is myofascial abnormalities plus autoantibodies that combine to trigger pain amplification.
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.
Why do my 2 daughters have fibromyalgia like me. It is obviously passed on to children. All three of us have hypothyroidism- hoshimotos. I am in my 60s, my daughters are 49 and 51
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.
22 years ago FM developed suddenly after interstitial cystitis became severe and chronic. Last year I was diagnosed with early seronegative RA, so I am really confused about all this. IC is mostly managed but FM is awful. I could really use help but rheumatologists refuse to even discuss FM.
I don’t like this approach. It leads to nowhere. What’s much more compelling is the observation that almost all fibromyalgia patients show an abnormal lactulose breath test compared to 20% healthy controls in Mark Pimentel’s 2004 study. This indicates SIBO (Small Intestinal Bacterial Overgrowth), which leads to a plethora of not only GI-symptoms, but also downstream effects due to the immunomodulatory function of the small intestine, not to mention the hyperpermeability resulting from it, and the downstream effects of bacterial (colonic, commensal Escherichia coli strains, Klebsiella pneumoniae and Klebsiella aerogenes) metabolites and toxins transposing into the bloodstream and causing immune response. Every fibromyalgia patient should get tested for SIBO or IMO (Intestinal Methanogen Overgrowth) through means of a lactulose breath test with 10g of lactulose and a glass of water, and with positive defined as 20ppm increase from baseline within 90mins for hydrogen gas (H2), 10ppm measurement anywhere down the test for methane (CH4), and 2ppm for hydrogen sulfide anywhere on the test. Only the sensitivity to biogenic amines alone can cause fibromyalgia symptoms simply due to the metabolites by oxidizing tyramine, histamine etc. not to mention the lipopolysaccharides and the immune response to it. Look into Mark Pimentel’ research for more.
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!❤
so what is the point?? we’re tired 😴 from research researchers only!!! what time we will take the magic 🪄 pill 💊 not for treatment 1% we just need the pain to stop 🛑 so we can go to the work practicing our routine life normally 😢 😢😢😢
wow I get it after having for 30 years a firm diagnosis of fibro before the Internet. I went to local libraries for info and out of 2 universities found one sentence in one medical book. was called fibositis at the time. was one sentence!!! sence then I went to college part time and wrote my own study in 2000 in Journal of Musculoskeletal Pain. As lay person. my study just looked for what we all had in common, and other things. wanted to find one thing so all these studies could have a jumping off point to start because in 30 yrs was tired of all the studies saying so many differ things. Bottom line in 30 years still no positive cause or cure. We need help now!!!
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
