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I have fibromyalgia more than 7 years now.painful all over my body

a bar of dark chocolate helps quite a bit

Only people that understand fibromalgia are the people that have it....I stop explaining my fibromalgia to people and started focusing on me, and my mental peace.... Our nervous system is stuck in fight or flight and we have to calm it down.....

I found the model presented by Dr MacKay made a lot of sense to me. I was diagnosed with CFS in 2007. Like Dr MacKay I led a very active life, competing in triathlons and off road running events, plus working, being a Mum and organising community triathlon events. I had glandular fever in my last year at university. Before being diagnosed with CFS, I was presenting with what seemed like a chronic allergic reaction potentially from chemical exposure. Fast track to 2020 and I had a fall accident resulting in a dislocated fractured ankle. After slow recovery and meeting the Budapest criteria I was diagnosed with Complex Regional Pain Syndrome (CRPS). I have often asked medical specialists over the past 3yrs, "Do you think having a CFS diagnosis made me a sitting duck for CRPS"? Quite possible would be the reply. Some of the theories regarding CRPS are similar to CFS - neuroimmune in origin and involvement of glial cells. LDN is a treatment being trialled for CRPS. So a lot of similarities - maybe I was predisposed to developing these conditions. I wish you well with future research and would be happy to participate in any future studies.

Had it since young and use Natural remedies and resources and light therapy

My hypothesis is that ME/CFS comes from mast cell activation from mast cell disorders. This is an inflammation in the whole body including the brain. Mast cells can produce and release more than 1050 different types of chemical mediators, a large part of which are inflammatory and difficult to measure due to their extremely short half-life. Mast Cell Activation (MCA) from mast cell disorders can cause all the symptoms, triggers and hypersensitivity we see in ME/CFS, Long Covid and Chronic Lyme Disease. It also seems that all ME/CFS coexisting diagnosis which is overrepresented in those who have ME/CFS is linked to mast cell activation such as Allergy and Asthma, Irritable Bowel Syndrome (IBS), Fibromyalgia Syndrome, Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS) , Hypermobile Ehlers-Danlos' Syndrome (hEDS), Endometriosis, Interstitial Cystitis, Attention Deficit Hyperactivity Disorder (ADHD), Chemical Intolerance, Small Fiber Neuropathy, Migraine, psychiatric symptoms and diseases and Autism Spectrum Disorder to name a few. From National Institutes of Health (NIH): • Targeting Mast Cells in Allergic Disease: Current Therapies and Drug Repurposing • Exploring the Origin and Regulatory Role of Mast Cells in Asthma • Irritable Bowel Syndrome is Strongly Associated with the Primary and Idiopathic Mast Cell Disorders • Mast cell mediation of visceral sensation and permeability in irritable bowel syndrome • The Role of Mast Cells in Irritable Bowel Syndrome • The Emerging Role of Mast Cells in Irritable Bowel Syndrome • Mast Cell Regulation and Irritable Bowel Syndrome • Mast Cells in Irritable Bowel Syndrome: A Systematic Review • Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome • Mast cells in the autonomic nervous system and potential role in disorders with dysautonomia and neuroinflammation • Neuropsychiatric Manifestations of Mast Cell Activation Syndrome and Response to Mast-Cell-Directed Treatment: A Case Series • Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association (POTS) • The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS) • Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature • NLRP3 Inflammasome Activation of Mast Cells by Estrogen via the Nuclear-Initiated Signaling Pathway Contributes to the Development of Endometriosis • The Mast Cell in Interstitial Cystitis: Role in Pathophysiology and Pathogenesis • Mast cell activation syndrome in pain syndromes bladder pain syndrome/interstitial cystitis and vulvodynia • Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD) • Chemical Intolerance and Mast Cell Activation: A Suspicious Synchronicity • Mast cell disorders are associated with decreased cerebral blood flow and small fiber neuropathy • Roles of mast cells and their interactions with the trigeminal nerve in migraine headache • Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases • Coping, social support, and anxiety in people with Mast Cell Disorders • Mast cells' involvement in inflammation pathways linked to depression: evidence in mastocytosis • Mast Cells, Stress, Fear and Autism Spectrum Disorder Long-COVID From National Institutes of Health (NIH): • Mast cell activation symptoms are prevalent in Long-COVID • Immunological dysfunction and mast cell activation syndrome in long COVID • Pathophysiology of Post-COVID syndromes: a new perspective • Mast cell activation is associated with post‐acute COVID‐19 syndrome • Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome • Antihistamines improve cardiovascular manifestations and other symptoms of long-COVID attributed to mast cell activation • Hoffman Centre Treating Mast Cell Activation Syndrome (MCAS) • Signs & Symptoms - Mastocytosis Society Canada • BBC Long Covid triggered our MCAS, but doctors didn't believe us • NIH Genetic explanation uncovered with links to ME/CFS • Mast Cell Activation Syndrome: An Alert to Psychiatrists ME/CFS is a diagnosis based only on symptoms where the cause of symptoms is unknown. This means that ME/CFS can be caused by several diseases. Many people with ME/CFS have Dysautonomia which can have many causes from drinking too little Water, physical inactivity, mast cell disorders, auto immune diseases and many others causes. In some of these people the original cause of Dysautonomia will go away on its own, but they have continued Dysautonomia due to physical inactivity. These people can be cured by increased physical activity which will make other ME/CFS sufferers worse. That was probably why the Rituximab study initially seemed so promising until it turned out that there were just as many people who recovered on placebo as Rituximab. Use H2 Antihistamine to reduce levels of stomach acid, Proton pump inhibitors increases the chance of cancer. • From Frontiers, Association of proton pump inhibitors with gastric and colorectal cancer risk: A systematic review and meta-analysis • From Frontiers, Histamine H2 receptor antagonist exhibited comparable all-cause mortality-decreasing effect as β-blockers in critically ill patients with heart failure: a cohort study • From NCBI, Mast Cells in Cardiovascular Disease: From Bench to Bedside

Thank you this was very helpful Dr MacKay. I am in Canada and on a waiting list for a specialist, by doing my own research have been able to realize that what I am going through is all part of Me/CFS , Fibromyalgia which I was diagnosed first. I actually felt the ME creeping in as the heaviness I first felt in my shoulders start to creep down my arms and legs. Now it's an effort to use my arms at times I am hoping it will be a slow process. I spent a day in Dunedin and enjoyed it very much especially Cadbury 's , I found a Rum and Raisin bar that I had not tasted since I left Ireland. Many Thanks.

I’m back here watching this again, you make so much sense. I can’t tell you how helpful this is. Thank you, and good luck to all the fibromyalgia suffers out there.

Awesome, your model fits so well with me too.

💯🤍Raelan Agle has over 150 videos of persons interviewed from all walks of life who have purportedly recovered from Chronic Fatigue Syndrome , Fibromyalgia and other challenges, including her own recovery stories. Worth serious investigation?

i would only take advice from academics who actually have CFS. NHS people are full of shite.

Fibromyalgia is neuroplastic pain it was created in the brain.thats why doooocs cant figure out what caused it. Brain is creating pain signals to those nerves stop treating the symptoms and treat the brain with psychology.

My mom, 73 , who has IBS since 2012 and Fibro since 2018. She is on Pregaba+Nortryptaline and Desvenlafaxine. We started Metformin 250mg 3 days back , she got good relief in Fibro Pain but IBS symptoms increased due to Metformin. Any suggestion? Hb1Ac 6.0

ruclips.net/user/livelhXQcCtD9x0?si=_amQ2sfrk2EYiTyN

Sorry if I'm just blind but i can't spot the worksheet she references at the end in the links. I went to the link in the PowerPoint but can't see a worksheet.

Thank you for all information! You are delightful!

It's nice to see this. Thanks for posting it. The blue lights are really pretty. I love the color blue and I appreciate the lengths you all are going to in order to spread awareness about this horrid disease that has ruined my life and the lives of millions of others. Namaste.

I didn’t think celiac disease could be cured, I’ve had it for 15 years. I thought you had fibromyalgia for life too, I think we have flare ups with FM. Meds just take the edge off they don’t stop the pain, as I see it.

Does anyone have low grade fever with FM, where it comes and goes. My skin on my arms become very clammy, sometimes I experience dizzyness and I become a little off balance when I walk. 🤷‍♀️

Oh that’s awful to have FM at such a young age. I know what your saying with kids and work, some how we just got through it. Mine started with fatigue I’d come home from work, and I needed to lay down and have a rest for 30 min, then start all over again.

Thank you very much for this information. I found it to be very reassuring. From Alberta Canada

This is so helpful, especially the “we just do not know yet” and looking at the whole person.

If anyone's interested, you can find two isometric yoga routines by Dr. Oka here on RUclips that improved CFS patients in studies. One is lying down, one is sitting. For me, personally, the videos are a bit too fast, so just watching the videos and starting to do a subset of the exercises at your own pace and at your own frequency would probably be the best way to go. Godspeed to all of you!

So many people don't understand at all. Understand zero. People can be judgemental and patronizing over a physical real disease.

Thank you for sharing.

Thank you.

Sadly your first list was me to a T. I have had it all for over 30 years now, tried all the meds without success. I was recently in a car crash and it has sent everything in to overdrive. The physio to help me heal has only stressed me out as it is making it all worse. Your info. was helpful as was reading the stories of others. I will have my family watch it also to help them understand. Thank so much for a very enlightening talk.

I was informed I was drug naive in A&E one day.. I honestly thought the nurse was being insulting, as I work in health care, and had never heard that term. I learnt a lesson about my inability to respond to opioids that day. My belief is that I have fibromyalgia. I have every symptom spoken about in this podcast. I also developed celiac disease .... And a B12 deficiency. Had ongoing elevation in my white blood count over the last 20 years but nobody would look at the cause.. Only tried to treat the symptoms as they arise. I am currently self medicating.... But have requested an intrinsic factor test. The NHS only take the overall B12 in the blood test, not what is available for the body to use. I've also started taking CBD oil in vape form. I've also started applying a B12 patch. In 4 day's I've improved significantly. Searching the co-factors now to make sure I'm in the optimal range.

I use libby all the time so didn't expect to learn much but i did! Thanks

🙃 *promo sm*

OOOh - It is so refreshing to hear a real person in our lovely New Zealand talking about Fybromyalgia so honestly! You beat hands down all the other cranks out there who think they know what it is. Thank you Bronwyn. The fact that you are living with Fybro and doing the job you are doing is amazing! The challenges, frustration and lack of understanding - everyone thinks a pill will make it better - b.....s..t. That us just a big coverup! I have had Fybro for 28 years and although the attacks have lessened lately from permanent 24/7 days, to now fairly often but don't last as long, I have learned to help myself as pills never did really. My cure is a big glass of hot brandy and a hot water bottle placed on the pain and a lie down for a few hours and sometimes a sleep, which usually works now for me. (Lucky now I can do that, might be a bit hard at work). The brandy seems to relax the muscles in my back, the hottie helps warm them and then me completely stopping anything I am doing when I just cannot possibly do any more. Sometimes I can hardly breathe it hurts so much. Sometimes it comes and goes over three days and then no pain for a few days. I just wish I could get a decent nights sleep! Now, I know I am not going mad and it is not all in my head, especially with all the other symptoms I hadn't realised were possibly a part of Fybro. It would be great if there was a real cure! Thank you so much Dr Bronwyn Thompson for your honesty and openness. It explains so much!

Someone who understands!! So very helpful. Thank you!

I'm living with fibromyalgia an it's different were ever I go ,everything unsaid is me !!

Any chance people can keep their questions until the end? It's really interesting but find it a bit distracting to the talk to keep jumping to questions.

I was a avid smoker before u developed CFS. Now if i try anything with thc my heart rate goes nuts for hours almost sending me to the hospital. Oh how i wish i could smoke or eat edibles again.

Thank you for sharing this - i found it very helpful and informative

It took 20 years to diagnose me! Only three years ago a lady doctor listened and accepted that my pain is not in my imagination. In the UK there is no a proper support 😢

I was diagnosed with Fybrocitis at nine years of age,have suffered many symptoms over the years,when looking back really don't know how I bought up two boys and also held down a job as was often so tired didn't know how got out of bed-now am seventy eight and there has not been improvement in help for people enduring this,🤔

Have you found out that gluten sensitivity affects Fibromyalgia?

does anyone have issues with their teeth or gums....sores, lots of root canals etc.?

dont need a prescrip for capsaicin cream here in the U.S. Can purchase at any pharmacy

i now know the difference between an Australian and New Zealand accent

Saďly I can't hear it once the video of you appears.

Hi There Doctor Thompson. My name is Bekki.I am 50.Currently after many years i have since 2022 been on a medical journey which i now believe my symtomps are fibromyalgia.I am looking to get this diagnosis medically. Would you have a contact address please. If that is something you would have time to help me out with. Im looking for further help to manage my symptoms. i can send my e mail address for further contact. If not. Thankyou for your you tube channel. Its very helpful.

Very interesting and encouraging. I don't have FM (as far as I now) but I have a genetic kidney disorder and have had years of operations which I suspect has triggered an inflammatory reaction and almost constant background pain in my flank and groin. I distract myself by keeping busy (almost manic at times) but this leads to exhaustion, poor sleep and a lack of focus. Others see me as high energy or conversely somehow 'hungover ' or worse which is rather insulting considering I cant and don't drink. I can empathise to some degree with your pain dilemma

I've had fibromyalsia for 10 years and it has completely ruined my life. My pain is so severe I can't do anything this woman can do, especially walking.

1:16:25

I'd like to say Thank you to Dr B Thompson. I'm in the UK. Fibromalgia, for me is totally debilitating. Restless legs has turned into full Restless Body....That can last for 24hrs.. Thank you for sharing your story. Ps. Let's not forget to Jig to music 😂

I was cured totally during a 6 month period early ín my fibro journey (have CFS too). Dr Bill Anton (now dec) put me on a myriad of natural products , starting me on Aminoplex with water for the first week along with loads of antioxidants and vitamins. I was totally bedridden when i began and within just 5 days i could walk many kms, pushing my baby ín a pram. I remember many kf the products but not all. I coukd not afford to stay on the regime and went onto glyconutrients ínstead which helped me remain at about 50 to 80 percent health, but never back to 100 percent. Bill was a biochemist who studied my blood live and watched it as it dried...My blood looked like coils..I never told him my diagnosis but he said you have fibromyalgia, and it has been caused by leaky gut syndrome. Yes my doctor had put me on Viox and it had ripped holes into my intestines..Thank god it was banned for killing patients but i am sad my doctor put me on a new untried drug in the first place.. 😢. PS I cannot handle hot coffee either .

waking up between 1 to 3 am every day is so exhausting! Headaches, too! I think I'm in a flare!