What your doctor DOESN'T know about fibromyalgia pain is hurting you!

I have Fibromyalgia. I have Hypothyroidism. I have osteoarthritis in all of my joints😮. I have a 25 year old severly broken right elbow repair and a Ten year old right repaired broken shoulder. I am in CONSTANT pain. Dr has me on Tramadol, Xanax and Ambien. I exist. I am always exhausted. I suffer from severe sound and light sensitivity and worse than any pain, because the pain is the LEAST of my issues, is my total exhaustion and anxiety. Also now that im 60, my brain seems to have taken a vacation. I suffered the loss of both of my parents in the previous 2 years and a move to a new state. I am most happy when all i have to do is cook and do laundry. My husband (rightly) expects that i should get a job. I don't have any part of me left over for this. I am not lazy, i just feel like i am dying all of the time. I wake up counting the hours to bed time. Thats all i wanted to say. No, one more thing. My whole hearted prayers to all fellow sufferers. Silent afflictions are so frustrating.

I believe it is trauma in our lives which causes fibromyalgia and where there has been constant trauma like the loss of your husband or wife or child, on top of childhood fears or previous divorce, then it’s a breakdown of nerves and muscles with severe disabilities. So many women with fibro too. So sad. Life of endurance.

i was diagnosed with chronic PTSD a few years back and have suffered a lot of anxiety and depression since the incident which triggered my PTSD. I noticed i ache all the time and walk like an old man. After doing simple chores like mowing lawns i am literally exhausted for the rest of the day and i ache all over. I was also diagnosed with ADHD and both my ADHD and PTSD has damaged my sleep health considerably where i struggle to sleep more than 2-3 hours without interruption. Never wake up feeling refreshed. I believe my constant aches, slow painful gait, low mood, poor sleep seem to give same causes and symptoms as fibromyalgia. I just avoid doctors like the plague due to bad past experiences and most of them are terrible, lazy, arrogant penny counters. I refer to most GP's as pharmaceutical middle men, sales reps for big pharma. I can't even get to see a psychiatrist for my ADHD due to the 18 month waiting list. If i was a horse i would have been humanely put down by now.

I started using cannabis three years ago for my fibromyalgia. It helped tremendously with my depression and helped me to deal with the pain, three months ago. I started on 100 mg of CBD and I immediately experienced pain, relief and reduction in my inflammation, this is in addition to 300 mg of gabapentin. I finally feel almost normal and I’ll take that for now ! This is a great informative video I can’t wait to share with my Rheumatologist

A doctor with fibro who understands fibro? I'm in! I just headed over to Amazon and purchased your book! I've suffered with fibromyalgia/CP/CF and related conditions for nearly two and a half decades now. Thank you for the new tool that I'm hoping will help me talk to my doctor.

I’m grateful for more in-depth exploration of Fibroymalgia. I’ve had it since childhood along with endometriosis. I’ve personally had a hellish time with medications, even the low dose Lyrica I recently tried again. It is not even an option while attending college, because it adds to fatigue like the worst thing. My hope is for people sensitive to meds to have some more relief.

I'm almost 2 years into my official diagnosis and your first slide is exactly where my treatment is. I still have pain enough to set off nausea frequently but, figured that this was just going to be my life from now on. The fatigue is so extreme that I haven't been able to work. I could say so much more but I'm crying tears of joy because your research is giving me hope.

I feel like gp needs to listen to the patient more and actually believe us. Im tired of being ignored and gaslighted and tild im not that bad

I believe Fibro could possibly stem from excess cortisol levels due to nearly constant Fight or Flight episodes. I personally can't remember a time in my life that I wasn't in pain. Having a father who seemed to enjoy teasing his overweight daughter, an emotionally distant mother, and a disastrous school and social life did wonders for my childhood stresses! I obviously had the physical signs of excess cortisol, so much that they put me in the hospital for a week when I was 12, testing me for Cushing's. Apparently negative but they never addressed or treated the excess cortisol coursing through my system. I was a tense, hurting, stressed out kid with too much cortisol. I'm 55 now (old profile pic) with more autoimmune disorders than I want or need and only getting worse. And I can only get Rxes for Tramadol (which I use only when absolutely needed), Klonopin, and also Baclofen for my MS (which my new Neuro suspects I DON'T have but was officially Dxed in 2005). The Hoshimoto's (treated with Synthroid) suspected RA & Sjrögren's (currently untreated except for OCT meds) are wreaking havoc as of late. I refuse to take immunosuppressive meds as they increased my MS exacerbatios five-fold. Optic Neuritis in each eye more than I can count. Stopped all MS meds in 2008 after severe reactions of Tysabri put me in a wheelchair temporarily then walking aids for 2 years and Rebif after that causing severe depression after only 3 3/4 doses. I'm at my wit's end. And I STILL HURT, despite the meds I take, albeit, it ain't much! Hard to find a Dr who knows his/her stuff...

I don’t know if anyone else has discovered this but I did by mistake. A friend gave me some lidocaine XR (12hrs) dermal pain patches cause she thought it would help with my back pain. I was too shy to tell her that they prob wouldn’t work as my back pain is in the spinal joints and discs so deeper than the dermal patches would reach. So out of politeness I tried them and to my surprise they helped with my fibromyalgia pain… go figure?!? Then I remembered reading a research paper that was looking at the role of the dorsal ganglia in fibro pain and came to the conclusion that it may be linked to some sort of disruption between the CNS and PNS (which if I understand correctly from your talk the dorsal ganglia is the connecting part of these two nervous systems). And I’m not too sure how deep in the skin the topical lidocaine would reach (?) but I imagine they would be more closer to the top layer of skin (where the patch sits) since they are nerve cells. They took upto 2hrs to take full effect but after that lasted another 10hrs of blissful relief with pretty much full relief from my fibro pain for the first time in decades! Like I said I was completely stunned and surprised by this but if this is true about the dorsal ganglia then this would explain why it. Disclaimer; I’m not recommending any treatments as I’m not a doctor or health profession just a person who has lived with fibro for over 2 decades and who is curious to know if anyone else has had an experience like this also?

Thank you Doctor ❤️ you have the best video I have seen in years on fibromyalgia. I've been suffering with this condition for well over ten years. This is a debilitating disease and people with this need relief now. We have been wanting far too long for people to understand that this is real. Doctors really need to see this video to help their patients. I will follow your blog and get your book. Thank you again and blessings to you. 😊

I've lived with fibromyalgia for most of my life and I have tried everything suggested by my specialist and alternative medicine. I've gone way past any of these treatments Now I have to just live with it ALL the gentle physical therapy has sent me into flair

I haven’t been diagnosed but I truly feel I have fibromyalgia. Most of the time I feel sore and hungover. My holistic doctor has me on a lot of supplements, immune ones specifically, and we’re hoping the inflammation she saw goes down. I just want to feel good and sleep like a normal human being. ❤

I was told I had fibromyalgia pain cognitive decline nerve pain , I went deaf tinnitus and my legs went stiff , I had chronic inflammation In my blood , I asked about my b12 over 20 years ago told was normal serum level was 250 I have learnt that no matter the level with Malabsorption issues you cannot digest b12 from your food I needed b12 injection as you are deteriorating the b12 injection stoped the brain fog stoped the cognitive decline , my Cronin fatigue has improved I sleep better . I have permanent damage to my legs due to nerve damage from lack off b12 you can have a normal b12 serum level as the b12 tests are flawed taking b12 supplements will flaw all blood test and will not help as you need b12 injections if you have malabsorption as you cannot access b12 from your liver store it’s the same as pernicious Anaemia . The intrinsic factor test is also not a true diagnosis as a negative test cannot rule out PA the brain starts to shrink and the whole body is in pain . The tests for a b12 deficiency are MMA - intrinsic factor test - active b12 - folate test Most b12 deficiency are low b12 - low folate - low vitamin d . They say all blood are normal but they are borderline very low There is a epidemic b12 deficiency and we are told your okay with very low b12 as 200 serum is a b12 deficiency Also with a b12 deficiency you homocysteine level will rise this causes toxicity to the brain and Cronin inflammation I had a cerebral stroke due to untreated b12 deficiency and told fibromyalgia for years , my high homocysteine is normal now with the b12 injection and the multi b folic acid and b6 heal the toxicity in the brain . Most low b12 are a low vitamin d due to malabsorption issues , low folate , low iron in some . This area is not studied and 75 % recover from the B12 injections and cofactors .

Dr Ginevra, thank for your knowledge, education & concise explanation of FMS, I was DX 1990, I have struggled severely since physically & emotionally due to the complexity of this & lack of MD understanding or that the stigma MDs that it is not real... to include family & friends I want to say sorry you have FMS, but also say thank you for having, your sent from GOD & truly have been an advocate & pioneer for all of us....... I am RN, love A&P, biology etc your depth & education is so refreshing & helpful.... Just wish could pinpoint the catalyst that starts the all over body dysfxn I do now that there is alot concern for parasites, virus, lyme disease, ? Morgellans etc that does not get sufficient study & seems to be poo hoo'd Again TYVM🌻

FIBRO FIERCE…love that! It’s so much better than term FIGHTING FIBRO, I’m truly 14 years now truly FIERCE as I hate FIGHTING a battle hour by hour, FM came on strong severe, im still learning and trying to absorb info in my foggy mind, now 53yrs old now! sending you IMMENSE GRATITUDE from my BODY MIND SPIRIT - this beautiful gift of your PAGE speaks directly to me and for me!

Another informative and very supportive video. Thank you so much Dr Ginevra 🙏🌹

I’m going to show this to my doctor when I go back in Nov. I keep telling her low dose Klonopin/Clonazepam (1mg at bedtime as needed) helps me tremendously. Hopefully she’ll finally listen to me? I’ve been dealing with fibro issues since the age of 7/8 yrs old & I’m 60 now. I definitely need something that works & I know low dose benzos/anticonvulsants work really well for me. Most doctors don’t want to believe that fibro isn’t a cookie cutter illness & that patients aren’t either. If a doctor treats someone that’s had fibro only a few yrs, somehow they believe that all patients are to magically be treated the same??? It’s like everyone going to the hairstylist & every single person in the world getting a buzz cut. Yeah, that wouldn’t work for me either. 🤦‍♀️

Great presentation ❤

Thank you ❤️ for doing what you do!