Understanding how to manage fibromyalgia - Rachel Lynch 

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.

@@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.

@@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 .

@@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.

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 .

🤗 you are definitely not alone.

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

Is very helpful!

We are brave warriors!

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

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.

Sounds like me

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

@@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 .

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

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

@@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

It absolutely is 100%

@@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

@@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.

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

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.

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 )

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.

My mission is to make people happy!

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.

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

So true.

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

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 🌹

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.

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

@@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

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 ☺💙

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. ❤

@@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.

@@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

@@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.

Me too. Now I am loving me.

What chronic infections though ?

I have CPTSD too! DDD as well! 😢

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

We also found a mild scoliosis, and bulged disks!

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

Ooops! 😳🥺🙄

@@toykawilliams9817 lol yep 😊

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.

I'm a private person but this is very relatable

❤️

Same

Me too

@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!!!

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

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.

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

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

​@@areguapirido you have hypomobility

How are you now