Understanding how to manage fibromyalgia - Rachel Lynch

[@meagiesmuse2334]

At 15:00, she mentions that losing people, losing your job, and losing your house and maybe being homeless are not things you really need to deal with, but needless worries. I ran a Fibro support group for 14 yrs. and many of us did have to deal with all of that, including me. I was diagnosed right away, but still lost everything due to being too sick to work. There is a wide range of how severe Fibro can be that shouldn't be underestimated.

[@kaasutizardrawr883]

I've lost people, my job and also in the process of being kicked out of my long term rented home. I've never been in this level of flare-up before.

[@meagiesmuse2334]

@@kaasutizardrawr883 - My Rheumatologist gave me some statistics and it was a long time ago, but I doubt it's changed much. She told me 23% of people with FM have to cut their work to part time or change to an easier job. Another 48% cannot work at all. The other 29% are able to work full time but most of them can't do anything else but work w/o collapsing. Many end up divorced when spouses refuse to do all the housework and child care so they can rest enough to keep on working.

[@avig8334]

@@meagiesmuse2334 your doc is right . I lost my job due to fibromyalgia. I’m a engineer. My cognitive impairment has been impacted so much . The physical is debilitating I can’t eat or sleep at times .

[@meagiesmuse2334]

@@avig8334 - I am sorry. I have horrible insomnia too, so I know how much that impacts everything else in life. If there is no support group where you live, you might try an online one so you'll have people to talk to who "get" how bad this can be.

[@dgsmith9969]

I've lost almost everything in my life. I find this dismissal as short sighted as those who said my symptoms were in my head. Lost family, friends, jobs, my home, pretty much everything .

[@summer._._.1988]

This person is talking about me ‼️. Thank you for sharing your real story with us. 😊 💜🥀🤗

[@DVazquez810]

I’m crying because I finally feel heard. Or seen. I’m young so everyone just shrugs me off. As if living in pain is easy.

[@tinacayford7549]

🤗 you are definitely not alone.

[@happy1831]

Definitely not alone. I’m bedridden now, but hey, could be worse, right 🌸❤️🌸🙁

[@AndresGonzalez-hs4kf]

Is very helpful!

[@buffy377]

We are brave warriors!

[@lisahodges9489]

I see you, and I hear you. I dealt with this for years before being taken seriously. You’re not alone.

[@1x56]

Such a wonderful talk. I've had a high level of stress for years because of toxic family. Never thought much about the connection to fibro but it makes sense

[@dianablackwood5160]

Absolutely it is. I developed Fibromyalgia from a nervous breakdown. And my family are my trigger .

[@nivekoch]

@@dianablackwood5160 One solution I’ve found effective for fibromyalgia and a ton of other conditions is Bemer vascular therapy. I’ve been distributing medical devices for 15 years and this is the first I’ve seen that helps at the root level, the blood flow and toxin elimination. Eating right can help eliminate toxic buildup, however. If you don’t want to stop eating the foods you love, increasing blood flow and lymphatic draining by 30% will do the same. PEMF technology is incredible, it’s Star Trek healing L😆L Albert Einstein said "Future Medicine will be the Medicine of Frequencies" This quote is ringing through loudly now with Radiation therapy, X-ray machines, Magnetic Resonance Imaging (MRI) PET and CT scans, and ultrasound have all become commonplace and all fundamentally harness the power of different types of waves and their specific frequencies that occur in nature. Bemer has been studied extensively and found to increase the ATP of the cells by 20%, creating energy at the source of the cells mitochondria itself, no need for coffee, drugs, or anything else. No need to suffer any longer, if anyone wants help getting a hold of a bemer to try, I’m happy to help. 513-828-2277

[@dianablackwood5160]

It absolutely is 100%

[@dianablackwood5160]

@@nivekoch I'm in Australia I don't believe we have that available. And for me it's 100% related to my mental health if I remove myself from negative toxic family I am 100% better

[@nivekoch]

@@dianablackwood5160 I am a mindset coach, if you’re ready to be done with allowing toxicity to have an effect in your life, I can offer you a Golden Ticket to the life of your dreams.

[@carolferguson19]

This is the best I've heard on Utube. And you have fibromyalgia. What a gift you are to us!

[@magentamagenta1274]

Amazing stuff! It only took 40 years to get my fibromyalgia diagnosed and it only happened by chance. I’m so glad that more and more resources are becoming available and people are not going insane or imagining their terribly debilitating illness. Diagnosis may not be a cure, but an understanding of what makes you feel ill and how best to manage it is essential to enable you to cope and function.

[@katiehewitt1541]

I have no people in my life my family is out and no friends either but it’s easier not dealing with stress and aggressive dramatic people being alone was a painful at first but I’m happy with no more stress from people’s mind games I deleted Facebook!

[@EuphemiaGrubb]

KATIE HEWITT - Same here. There's a great relief when realize you don't have to defend yourself to family, trying fit into a framework that is alien to you. When I look back I feel I was having to put on an act and kowtow just to get approval (which was never bestowed) LOL! It's wonderful to just quietly close the door on all that and relax at last.

[@emt6238]

Sounds like me

[@MissChrissyM1]

I’m here if you need to talk. I hv it bad. Bedridden with Fibro

[@emt6238]

@@MissChrissyM1 please research the leaky gut . Foods are big triggers . Processed food , sugar , potatoes carrots tomatoes, vegetable oil , sunflower oil , gluten for some. Surgery brought it on for me .

[@MissChrissyM1]

@@emt6238 thank you dear. Can Pain just show up out of the blue with no obvious/noticeable causes?

[@dirtyfox5800]

As a PhD student with fibromyalgia, it can feel very disheartening dealing with the condition but this talk has given me hope to apply the lessons here.

[@RollingBawlz]

Took me many years to finally get a diagnosis. The one main thing doctors didn't go further with it was because "I looked healthy and young" or I'm a male and males don't get fibro. Had so many problems with medicines, and end up being stuck on opioid because that's the only thing that helps. I'm still struggling and unfortunately in the US, someone like me will not get the right treatments and help.

[@carolferguson19]

I am halfway through and you are the best speaker for fibro. You are a wealth of information.

[@lizinawe]

was labeled "nuts" and impossible. naproxen had to work or I was just depressed.. for years it went this way, could not finish my PhD.. labeled lazy by my millionaire brother. the Cleveland clinic just wanted to give me low dose antipressives. it was not until I tuned into diet, no bread nor artificial ingredients, exercise, and learning to listen to my true needs that I started to feel better. and this was after 30 years.. grateful you are getting the word out in a shameless manner and are supporting all os us. blessings.

[@lizinawe]

ps.. finally went into addisions pushing myself too far.

[@murielday4013]

Lovely to see you after such a long time. I am from the Blackrock support group, lead by Ursula, I also did the Trinity course with you on fibromyalgia, which I still try to put into practice. The fibromyalgia seminar, was the best ever I would love to see another one. Rachel,you are great and you have put so much into getting better care for all fibro people bless you Muriel

[@GracesFoodHealthlifestyle]

What a journey! 10 years in my journey. Nothing else matter when you’re in pain! But I am getting so much better now. Life is meaningful again! ♥️

[@galemartinez6585]

You have explained me to a tee and I just started to reverse so many symptoms with a new direction. Everything I learned as a nurse has not served my health after years of being in pain and multiple health issues. Thank you and I look forward to learning how to be a priority. Especially the pain to be redirected.

[@Kinergetics]

60 medical doctors/specialists! Having had Chronic Fatigue for 30 years and been to over 60 doctors and specialists with no results I had basically learned to live with it, even alternative practitioners couldn’t help. After watching nearly all of Philip Rafferty’s videos I knew I had to do his BNT course. Philip did a BNT balance and within 5 minutes my pain went from severe pain and exhaustion to no symptoms, with energy levels up to 8 out of 10. My brain fog is gone, which had caused enormous frustration. I will be forever grateful to Philip because now I can live my life pain free. LR April 2019 I have seen similar results in over 90% of students and clients with CFS, fibromyalgia and arthritis. Philip. Coming to Ireland soon.

[@catherinebetts8270]

Racheal has a very engaging speaking style and I thoroughly enjoyed her program. I have learned so much and wish I had an opportunity to attend such a conference but sadly there is nothing even remotely as helpful where I live in Southwestern Ontario, Canada. Hopefully with more resources and attention being brought to studying Fibromyalgia conferences and support like this will be available to more communities worldwide. TG for KZbin.👏👏👏

[@marianvisser3775]

I'm in SW Ontario as well. Once I got a fibro diagnosis, there's been no effort to diagnose further - everything is 'just fibro'. Specialists just diagnose and pass you back to your family doc, so there is no specialist care You really have to research and seek things out on your own. This series has been very informative and helpful.

[@Calminthechaos.]

I'm sorry but 'when the cheese slid off the cracker' is the funniest most relatable metaphor I've ever heard to describe the turning point of when it all started! 😂😂😂 I have not listened to it all yet, but I feel very seen listening to this, so thank you!

[@iridescentmoondreams6346]

Thank you for this! I'm one of those people you mentioned where their doctor just gave them a diagnosis, prescribed a medication, and then left them to figure out everything else on their own--which did not go well emotionally or physically. So getting some direction from this was very eye opening and helpful. I feel less alone

[@AndresGonzalez-hs4kf]

My mission is to make people happy!

[@katehagno1184]

Very positive approach, congrats. I can't work for years now and lost a sense in false optimism...now struggling to sign the form correctly

[@sabineekaterinamuller8322]

Instead of sleeping. I am watching this

[@karenmcmanis3971]

I so much enjoyed this talk. Thank you Rachel for being candid about Fibromyalgia and giving examples of what has and has not worked for you. I picked up trinkets from your talk about why I feel the way I do in some areas. For instance, the hypoglycemia that you mentioned is my fate and at least I know that it could be due to my fibro. I have an excellent medical team but it is also nice to hear other peoples' experiences who also suffer from this condition.

[@frangipang1955]

Routine...what routine. Some days I'm in bed at a normal time and sleep for a few hours. Irritable bladder kicks in and I'm in and out the toilet for the rest of the night. Too tired to get up then till lunchtime. So my body clock changes all the time. I have tiredness to the point of Narcolepsy which means having to sleep with no choice in the matter. These episodes of sleep last up to 28 hours straight. Then I can't sleep at other times for 30+ hours. Ends up with me in bed all day, up all night. Not to mention episodes of RLS, Myoclonic jerks, makes sleep or a routine impossible. After 26 years I just live with it, do the best I can. Could be a lot worse. Thanks for vid.

[@jgomes3369]

Your routine could be just some relaxing tasks before bed like stretching and breathing. Or even talking out loud with yourself about what's on your mind or journaling. A routine doesn't have to be an hourly goal it can be just a few tasks you try to do daily. Wishing you the best. Know that I get it. I have the same struggles.

[@suni2421]

Hello frangetude, I have the same thing happen to me. I sometimes feel instead of a 24 hour cycle I am running on a 30/36 hour one. I tried living in the "normal" world/time and finally listened to body and started sleeping during day up all nite. It was a struggle emotionally. Long story short LISTEN to ur body it's actually pretty brilliant. PS I am soooooo happy to know there is someone else who struggles with the time thingy. ( Not that I wish this on anyone )

[@sharonforkin6064]

OMG!!! This is me. It’s so frustrating especially when I finally get tired enough to fall asleep (can be up to 48 hrs + awake. Then when I finally get to sleep I sleep up to 24 hrs. So I have to schedule my sleeping time around appointments or if something is going on that I would like to attend. I opt out of most activities to avoid the suffering after the fact. I just thought I was weird.

[@Iamlynie1]

Great video. I actually have no support medically apart from a very understanding husband. Talk of a care plan, where to start looking for one of those? I'm in the UK.

[@suexicana]

Amazing talk! I was diagnosed five years ago but I think it might have been going on for at least 14 years. I am currently on sick leave and it is the first time in my life that I am working on my health in such a conscious way. It is very difficult for people around me to understand how I feel and I think that even many people working on healthcare don't have enough knowledge of the disease to help patients. It feels good to know that I am not alone in this journey and that it is possible to improve my quality of life. Thank you for the information ❤

[@ladyanne8139]

Mine came with slow gradual symptoms. The last was I was so exhausted I could not get out of bed. My journey began. I'm older so somethings I feel are related. But I sure have felt all the symptoms. Holding my own ... family is more and more understanding. Was slow.

[@ladyanne8139]

I was born w.a marker found at 17. My grandma had severe RA.

[@ayshane]

Glad I discovered this. Alot of points hit me and I will aim to make certain changes. I liked how relatable this talk was as well. Thank you!

[@christines173]

This talk was so helpful & informative. Thank you so much!

[@나대로-p7w]

This is BEST presentation that i have seen here in KZbin for fibromyalgia! I learned a lot. Thank you! ❤

[@cha2117]

The worst part is being sent round in circles by doctors, family and friends and so called government experts. Just have to tell them no it won't help.

[@avig8334]

Amazing talk. I got a lot from this .

[@mommiesfrugalfinds7318]

I have that too. Very sensitive to medications, diagnosed in 2000. I’m at that point with Fibro fog, sometimes my brain freezes. Trouble finding words. I even tried ADHD meds. Nothings helps much. Having spinal injections currently.

[@queenofpeaceandlove1413]

So true.

[@queenofpeaceandlove1413]

Thank you so much for this amazing video. I love it and I appreciate you so much!

[@johnathanabrams8434]

How do people get a diagnosis for this?

[@tribalequestrian4954]

Meds give me little help and mostly side effects. I got stomach paralysis on lyrica, cymbalta

[@vickipalm6679]

thank you i found this very interesting , i am a fibro warrior

[@laurenamitchell2346]

I was diagnosed with FIBROMYALGIA 9 MONTHS ago I will like to find out how to join your group and attend your lectures I live in Croydon Surrey I find that I go for days without sleep I need to join a group like yours

[@safarwisby8073]

Thank you for embracing holistic! So important...love....and smikes

[@jeannettegrondin7190]

Great presentation!

[@katiehewitt1541]

The teeth grinding and jaw clenching I find it lessens when I decrease stress but it was bad my jaw wouldn’t open sometimes I couldn’t talk it would fuse shut

[@patriciastott157]

Learning to live with way to much aggro from this world I agree it is easier to cope alone sometimes,without other people’s thoughts maybe you have empathic or highly sensitive mindset which to my mind makes you special...

[@lindawrobelkaminski5330]

I was physically abused and than at age 15 high school..8 of my friends were in killed while all in the car which my cousin Best Friend and all my friends majority were identified by clothing..back than NO COUNSELORS AT ALL we had to take part in a church ceremony than back to school the next day...most including me crying so sick vomiting ect and right thru our graduation where we put their names on theirs chairs ect...ptsd that was age 15 im 55 now and it doesn't ever go away and in this past years it was a big anniversary..they few actually had open caskets and no should all have been closed...long story short when im down with everything I call everything my darkside...and absolutely pile which is alot..again I lost over 6 people who were healthy all passed away on me...so I have no true friends anymore...my sister and made her family lied and all supposedly don't bother over 10yrs now...they all moved away to another state..my Mom im scared with her health everytime my phone rings...im very disabled so my dad has to drive fast to get me and get back..sometimes she doesn't remember me...and its was late but to myself and God I forgave my Mother for the abuse...I get myself so bad I sleep like 3 days and nights...than I start all over..laughing is a good releases endorphins and I can make people laugh so much and even crack myself up...and my life my cat TaLooLa I saved from a week 1/2 old and she beat the odds and where I hurt she knows and lays on me til the pain changes and continues...she is an Angel from God...also I read alot about turmeric otc and how it works with fibro or more...than I read about cucurmin sp ck..lol however that happened to be in the turmanic complex...so now I've been trying both 2 1 of each in my daily 100 medications..my shrink has been working with me..actually trying to for almost 20 years...I also help others with disabilities but between my brain fog which is getting so bad I literally can't carry on a short conversation...ty for your speech!!

[@katiehewitt1541]

Oh sugar is wicked it’s horrible for the pain and depression

[@SusanHMcIntyre]

As a child I remember feeling constantly fatigued after a year of constant childhood illnesses. I also got in trouble for mouth-breathing, yet no one ever asked why. Yet my mother & teachers always said I was just shy. We need to look at children with open eyes. I carried these mid-labels well into adulthood. In addition to fibro, I also have a nasty allergy to wheat- hence the mouth breathing.

[@SusanHMcIntyre]

We also found a mild scoliosis, and bulged disks!

[@Truerealism747]

​@@SusanHMcIntyreget check for àspergers eds ADHD I have them all with scolosis all parts fybromyalgia CFS decades

[@katiehewitt1541]

Till then I’ll keep on keeping on daily working with the condition best I can take it day by day is all I can do and try my best to see beauty I enjoy birds and outdoors and just try to see at least on thing positive I definitely don’t want to live long though I’m young and it’s really tough for sure

[@katiehewitt1541]

I have complex post traumatic stress disorder ( harsh childhood abuse I went through)

[@shastina5493]

I have CPTSD too! DDD as well! 😢

[@katiehewitt1541]

Thank you for sharing and I wish you strength and love I wish you more good days then bad !

[@PinkSallyProductions]

Fantastic! I wish that I had had this info given to me when I was diagnosed, rather than find it piecemeal over 15yrs. So concise and helpful, makes me want to move to Ireland from the uk to get better support! 🌹

[@ShanonT12]

I hope you've found local support. There are groups all over the US. Many assoc with hospitals.

[@PinkSallyProductions]

Shanon Thatcher Thank you 🌹 I am in England and looking for similar support as the groups I have tried so far concentrated more on the negative aspects and were quite depressing 🌹

[@ferhat6730]

Thank you from Türkiye. Wet cupping and slug therapy is also good.

[@florinp741987]

a lot of people with a fribromilagia disease are misdiagnosed...take a look at lyme disease, rheumathic diseases, and chronic infection with bacteria or viruses.

[@hannahm2430]

What chronic infections though ?

[@HAST0408]

Very curious if I have this, or just a slow stubborn case of mono

[@nickmalveaux6131]

Would strength training help? If so how intense? Is heavy lifting ok or just light lifting?

[@nataliepitcher2612]

Thank you. Best talk I have heard. Can you come educate South African doctors. .....

[@lorendisney6573]

Another excellent video

[@katiehewitt1541]

I’ll count my blessings to have a natural athleticism and artistic ability even though I have fibromyalgia the blessing is I can still enjoy physical activity and art even though some days or weeks or months my body goes into bad flare ups where I have trouble moving or laying down from the physical pain even though I get migraines and skin rashes at times at least they go away they are not permanent the sensitivity to light and noise those are days where I shut down all stimulus completely and that’s ok and the sensitivity to touch well I don’t get touched often and I have soft clothes to wear I have healthy food a bed and a roof over my head and again am fortunate to be able to have the gift of athleticism and art because some others with fibromyalgia would love to be able to hike or do the acrobatic things I can do so I have to count the blessings it seems with fibromyalgia we all as individuals suffer greatly but our challenges are unique to the sufferer we have different abilities and strengths in different areas my trouble is the isolation and feeling like a failure because my family dosn’t care or accept me and sees me as a burden and they also are the source of the childhood abuse and trauma I suffered causing fibromyalgia and again the hurt from that and being bullied the hardest part is they justify it they pretend that life was so wonderful they deny the truth and I had to let go from them for my health because they where continuing to hurt me it’s odd that I’m the only one diagnosed with it and who has symptoms they never experienced I think it’s because they are insensitive and abusive and I am very sensitive and my body was affected as where my emotions by the abuse so insensitive people do not get or understand fibromyalgia or any illness brought on by stress or trauma because they don’t feel things the same as us who are highly sensitive I really wish you well keep going keep strong this is a wonderful video! And explanation for everyone it’s nice that in Ireland more care is given to this all the best to everyone of you Canada has yet to catch up to your understanding and services for those of us who struggle with fibromyalgia thank you bless your heart and hearts

[@katiehewitt1541]

I’m naturally like that list yep toxic people have ruined me

[@pamalamattos9419]

Besides having this horrific fibromyalgia, does anyone have restless leg syndrome? Numb and tingling hands and feet? Oh and lucky 🍀 me, severe sciatica!!

[@katiehewitt1541]

I have asthma anemia and celiac disease get migraines I’m prone to pneumonia and infections I’m still on antibiotics and have just gotten over pneumonia that began in September

[@jennyweyman3039]

Low carb diet really helped me

[@anothercampervanchannel]

That's interesting about the amygdala being bigger and making folk hypersensitive. I am definitely hypersensitive. It makes life very hard sometimes.. 😧

[@traceyhilder3426]

Great video thanks for sharing , great to hear it said in a real way for sure

[@Freesoul54]

For me daily hydrotherapy ( hot jacuzzi), rest and combination of meds makes my life worth living. Deep tissue massage also helps

[@jgomes3369]

You are so right. I like what you said "make life worth living" isn't that the truth! With this disease it's all about gaining daily enjoyment.

[@GracesFoodHealthlifestyle]

I have use the same regularly over the years. They help greatly 👍🏽

[@monicav1428]

@@jgomes3369 I was in a bad car accident and I was tee boned. Pushing my body sideways to the left. I ended up having burstitis tendenitis and partial tears. Mild concussion and hurt my shoulder cause had surgery on it a year before. Then as time went by they said my pain is chronic cause it was more then 6 months and I was not healing. Then I was wondering why I was so tired and it lots of pain through my full body and my skin was sensitive to touch. So I finally got dignasoned with fibromyalgia 4 years after the accident. But people were always telling me it was always in my head. I am now on permanent disability cause I found it hard to drive and work. Cause when I woukd come home I would be exhausted and I always was calling in sick. But finally people started believing me sent me to a rhumotogist and getting treatment. I am slowly starting to do things but I have not totally understand how to control everything to try and help me cope through a day. For I also think I have nerve damage in my lumber spine which causes me a lot of pain and suffering and goes down into my legs and behind in my knees. Was suppose to go for a test for nerve but due to covid it's a very long wait. If there is any information you can provide me please let me know so I can live a better life. Cause right now I dont have a good life and I hope I can get better. Thank you

[@katiehewitt1541]

I feel horrible about myself I haven’t been treated very kindly so it’s hard to counteract those thoughts people have been horrible mean and abusive

[@queenofpeaceandlove1413]

Me too. Now I am loving me.

[@ionicacorbet3561]

Can Diplopia (Strabismus) be a symptom of fibromyalgia? (Eye muscle involved!?) Otherwise all normal tests: multiple sclerosis, myasthenia gravis, thyroid, etc... Acquired in the last three years and worsening over time.

[@ritaberube5507]

Read Book “What Your Doctor May Not Tell You About Fibromyalgia by R. Paul St. Amand and Claudia Craig Marek

[@lisaalexander1102]

“We live forever, that’s the good news.” Unfortunately I don’t see it that way, at least not for me. I can’t wait for this hell of an existence to be over. 😔

[@frangipang1955]

Me too Lisa. I'm almost 65, have lived with it for 26 years. The illness, I have learned to manage. But it has been traumatic coping with the isolation of it. People don't get it and I am tired of the blank looks I get from people or the lack of understanding. So now I don't mention it. I hope to God that I won't live too long. Sometimes, at my lowest, I have wished I would be diagnosed with a short quick terminal illness, but that's awful I know, because life is still precious. My friend had Fibro and took her own life. At her funeral I could truly understand what drove her to it. Hope you are not suffering too much and are the best you can be. Love Frangi ☺💙

[@jgomes3369]

Hope you all are feeling better today. I am 32 and was diagnosed with chronic pain at 2. I know it can be overwhelming but there is so much more to life than how we feel, there is our experiences. ❤

[@juliekailihiwa8150]

@@frangipang1955 me too. The fibro& CFS is invisible to everyone in my life. I "look" physically fine. But I feel like I'm dead inside from constant pain and ridiculous fatigue..almost like narcolepsy. I was a FF/EMT and Wildland FF. In my prime a few years ago I was fighting wildfires in SoCal which took brutal strength and endurance. I was athletic. I was a swimmer. Snowboarder. Pilates. Yoga. Hiking. Loved Dancing. Tahitian and Hula. Horses..gardening...and I am now 51 and this started last year. Now I struggle to: walk across the room because my feet feel like I'm walking on hot coals.. wash my hair bc my arms hurt to raise them for 5 min and my head hurts when I wash my hair and brushing it is exhausting... drive to the grocery store I lean on the cart for support and try not to engage with people and just get through it as fast as possible but then carrying bags of groceries into house exhausts me so much I have to go lay down and nap! ...and to do basic chores I have to take so many breaks to do what I used to do in an hour and more efficiently. It all changed in a matter of months...I went from being a very active social person with so much energy who loved to cook and entertain and have dinner parties to a shell of me in what seems like less than a year. It's so depressing I don't even tell anyone anymore. I'm so tired of trying to explain it to people and they think you're making it all up because you look fine. And the physicians look at me like I'm faking it or a hypochondriac. I can see it on their faces and their expressions of disbelief ...eyes roll as they are charting... like I'm wasting their time. I completely understand every point you made in your comment. And it's not that you're a typically suicidal person. It's just that you see no end in sight because there is no cure..no real medication that actually works (yet) no one validates it and you are so so so mentally and physically exhausted of it all. When I can sleep which is rare I pray that I don't wake up. I used to pray for strength and guidance and the ability to persevere. Lemons and lemonade. Now I pray for it to just end. I feel like my life was stolen but I can't report a crime of theft when there isn't any physical proof. As she said it's not visible on MRI's Xrays and there isn't any labwork or tests that can definitively prove it. When the medical community barely believes it exists it's nearly impossible for the rest of society to believe you. I have tried to explain CFS like I was given a cheap faulty car battery that runs out of juice after 5 min of use and it takes 72 hours to charge it. I would like to fly to KC to see Dr.Nicol. She nailed every detail, unlike any specialist I've seen. Her lecture brought tears. I've probably over shared...but your comment was so spot on I just felt compelled to respond to your reply that you're not alone.

[@highphysics3617]

@@frangipang1955 Hi. I came home from hospital yesterday after total knee replacement last Monday. I am in agony with spinal crush fractures,and,having to lie flat on my back to keep the knee straight. Add to all of that there is the fibromyalgia that is a constant companion to all the other STUFF! I want to scream,I want to punch someone,I'm sick of the constant pain. Pain killer medication is only marginally helpful. There will be two catheter injections today,and,tomorrow at the hospital. After that...who knows. How the hell do I cope with the level of pain?? I want to be rid of it,and,don't know what else I can do

[@highphysics3617]

@@juliekailihiwa8150 Your words are very thought provoking. How do I just grit my teeth,and,get beyond the pain situation? It's utter agony non stop.

[@missrobynlouise]

Does anyone else get bad palpitations with fibromyalgia? I'm not sure what's causing mine 😥 had loads of tests at the hospital that all came back clear. Yet I have ectopic beats and past week palpations none stop. Is it anxiety and stress from having fibromyalgia?

[@pamalamattos9419]

@missrobynlouise It’s possible. Did you have anxiety before being diagnosed? I also have palpitations, but I also have CVD and a heart murmur. I know saying “try to relax “ is impossible, but if the test say nothing is wrong with your ❤. Get 2nd opinion or do something that makes you happy and relax! Fibromyalgia is hard to manage, just be careful and be nice to yourself!!!

[@donzabonza2026]

I and a lady I met in a pain group have heart flutters. 💛

[@bs6495]

I can relate to the list

[@jodiemorgan6809]

Thank you so much for this information. It’s very interesting and helpful. 🙂

[@tribalequestrian4954]

I have fibromyalgia fog bad, people think I am such a dope.

[@galrod64]

Very helpful video. Thank you so much.

[@tammysoutherland1405]

THANK YOU THANK YOU SOOOOOO MUCH❣️

[@altaroberts5105]

I diagnosed myself and GP's doesn't knowca thing about fibro

[@katiehewitt1541]

I have no family or friends I had to stop seeing my family because of the stress they caused me and I have been bullied all my life so I never had friends still don’t and people don’t understand because I’m young they judge me call me a weirdo because I have no family or friends yet am young

[@mslamechee]

I'm a private person but this is very relatable

[@Ascenscion777]

❤️

[@heathermariearmbrust]

Same

[@missrobynlouise]

Me too

[@anothercampervanchannel]

My mouthguard doesn't stop me grinding or clenching my teeth. It just protects them, well, it did before I dropped it down the toilet...🙄

[@toykawilliams9817]

Ooops! 😳🥺🙄

[@anothercampervanchannel]

@@toykawilliams9817 lol yep 😊

[@amilie15]

Could it be worth speaking to your doctor or dentist? Mine used to wake me up a little when I was clenching although not as much any more. When I wear it for a few nights it definitely reduces the jaw pain for me. Maybe you need a different type or thickness? Might be worth asking in case there’s anything that could give you relief.

[@love2can]

Thank you, very helpful

[@dgsmith9969]

Ireland must have good medical plan cause im not getting anything but drugs, some i cant afford. It truly feels like they just waiting me out until i die.

[@bluebonnetbutterfly5728]

Doctors who finally get it, and finally understand……..and who will LISTEN.

[@WendyHannan-pt7ez]

I wish Drs would watch these videos, they would learn and understand the next fibromyalgia patient that walks in the door.

[@tomakram872]

6 years and its destroy my life I don't get good days 24-7 and it sucks doctors cant help hospitals cant help ... cbt doesn't help social life goes down the pan most things go down the pan

[@jgomes3369]

What about now Tom? I hope you are finding some relief. It's all about trying to get that relief daily and reaching out to a community that understands and is compassionate.

[@suzannethompson9261]

Me too but I call mine cfs me because my fatigue is worse than the pain usually

[@Cariad247]

Very informative....

[@Baby48612]

How i'd love to attend your workshop here in Malta. All the treatments you mentioned are very effective, but we do not have them here, while we have a lot of Fibro sufferers.

[@sallymartin6184]

Thank You Namaste Om

[@holliyargo]

I don’t get TMJ but I do experience the occasional carotidynia (might be spelling that wrong) which is essentially a migraine in your jaw. I thought it was TMJ for the longest time. I do, however, have the other other three mechanicals.

[@tinacayford7549]

It’s like she is telling my story. Pain sucks, but having been “gifted” my whole life the fibro fog is completely demoralizing. I was diagnosed pre “pain” but sixteen years later I am not being “treated”. Predisposition: my mother, her sisters, and her mother (and possibly Grammie or Memere as well) have had this getting diagnosed earlier and earlier. Perpetuating factors : impoverishment rearing multiple children with developmental disabilities which were not as well known or understood at that time. Designing Ed programs and advocating for my own children and others. Probably undiagnosed autism spectrum disorder leading to masking stress. Increased financial pressure because of medical needs that are NOT helping. Humiliating Dr’s not listening or hearing my reality. Crashing characteristics - not me. I am the opposite. My mother on the other hand is woooahh that person. I am soooo not enlightened enough to reach the suffering is optional stage yet.

[@lindawrobelkaminski5330]

Holy spoken on speed...excellent speaker though..loved this..ty ty ty

[@kaylabryson1932]

You are an excellent speaker. So much better than the annoying self absorb American Doc who had a lot of facts wrong. She’s young... she’ll learn a lot.

[@katiehewitt1541]

But ya Facebook and social media caused me so much emotional stress I was bullied on Facebook and I would feel worse about myself seeing people had happy lives

[@katiehewitt1541]

I have had to learn to use NO

[@lindamoses3697]

I manage my fibromyalgia by staying in bed 90% of the time. Nothing but nothing has helped.

[@Truerealism747]

Do you have hypomobility to I've had CFS fybromyalgia 27 years though I now no I have asperger's ADHD genes for it as most do

[@areguapiri]

Same for me. Staying in bed is the only soothing relief from the constant discomfort.

[@Truerealism747]

​@@areguapirido you have hypomobility

[@happy1831]

We are long lost fibro sisters USA 🌺

[@katiehewitt1541]

Same here really bad reactions to medications anephallectic it’s that bad I cannot take certain allergy medications I know that’s strange I have had allergic reactions to every anti depressant going

[@safarwisby8073]

So good to hear a complimentary pray that this could be so in all areas ....the world would be so different! Thankyou

[@bagavicky9958]

Is there any possible to get pregnant with fibromyalgia?

[@khathutshelondakula6992]

Baga Vicky I am also so curious because I am young and I wish to have kids.

[@shastina5493]

I did! So there is that hope I hope helps you both! Best wishes!

[@jeremyslaymaker]

I’ve had Fibro since 15 years old. I’ve had 3 children. I would have had more children but physically 3 is all I can handle.

[@bagavicky9958]

@@jeremyslaymaker madam does wbc count increase due to fibromylagia

[@katiehewitt1541]

I reacted also to seroquil and topimax ( ant anti seizure med used for fibromyalgia) it was bad but every anti depressant every family of antidepressant meds swollen face wheezing eyes swelling shut went to emergency immediately that severe

[@sabineekaterinamuller8322]

I was diagnosed after my child was born in 1988, but i wasn't' helped much anyway.

[@kgreen9408]

Thanks for sharing this!

[@robertachurchill6989]

You have interesting information but you are speaking so quickly that you make me very tense and painful. Do you have a book or articles?

[@kristivice5537]

Has anyone tried the carnivore diet?

[@katiehewitt1541]

Facebook is so stressful i have tmj I have a mouth guard I’m supposed to wear

[@queenofpeaceandlove1413]

Thank you reminding me to wear my mouth guard again. Makes so much sense.

[@SAVETHEKIDS-bn5zo]

Managing how about a cure