How to Explain What Fibromyalgia Feels Like
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- Опубликовано: 6 июл 2024
- Trying to explain fibromyalgia to family and friends can sometimes be more challenging than dealing with the physical pain itself. Here's the best way to explain it.
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How do you explain fibro to others? Tell me about your experience...
Am not sure if I have fibromyalgia. I dont suffer fatigue but my pain moves around my body by the second and never lasts more than a few seconds in the same spot ....
Forgot to add I suffer high blood pressure and circulation problems could this be fibromyalgia
I say it feels like that first day you know the flu has set in...and that flu feeling never goes away.
I describe it like this: 'I constantly feel like I have the flu without respiratory symptoms. My entire body hurts and I'm exhausted. My medical regimen, including medications, gentle physical therapy exercises, and plenty of sleep, mitigate it to some extent, but it never goes away entirely.'
Everyone has felt the aches and exhaustion that accompany a bad cold or flu. I find that that particular phrasing helps people understand fibromyalgia based on their own experiences, so they can empathise.
Hey I am not able to get links to work. I want to watch your masterclass and take 24 hour challenge. Thanks
Nobody feels our suffering or understand how horrible of the pain and how terrible fatigue. May God help and support all Fibromyalgia patients
And this guy wants you to remember all these things to tell people right when you can barely remember your name. You just want to say please leave so I can lay down. And when are we going to get better???
Amen
I can’t tell you how many times I had plans with friends, but I had to cancel at the last minute because one never knows when they are going to be hit with a flare up. None of my friends or so-called friends even understood and many walked away because they were mad that their plans were canceled and thought I was a flake. It’s really hard to deal with emotionally and physically.
No one understands and it's so hard, I've had fibromialsha pain since I was around 4 years old but it wasn't bad at all. A few years ago I shattered my foot and needed surgery and then I needed back surgery. That's when it really set in the pain. I just got so much worse, and I was diagnosed with fibro, ever since my old friends are gone and I'm told just to get over it by doctors and family the only person that understands is my mom she also has fibro. It's a very depressing and debilitating condition I'm only 17 and I've got my whole life ahead of me I just don't think I'll graduate, I don't know how I'll be able to support a family like I've always wanted.
@@AMERICADG76 I don’t know if this will help you or not but try going on the carnivore diet. Only eat beef bacon, butter eggs only animal products, dish of any kind and nothing else. It is really hard to do because everybody like sugar and everything is sweetened with sugar, but it’s made a huge difference in my life and maybe it will help you.
There are days when I feel like I've been beat up, from head to toe. I've missed out on family events, lost friendships, and given up on myself at times.
Same here
Same also
Same. I don't know if I've given up or given in... I guess both.
Crying not kidding either loneliness
kimberly, jessica, Mimi and eyela...my sisters. We are the only ones who know and understand what we go through. I feel your pain. I know. We have all shed tears, known loneliness and hardship, and wondered, why...why me. Why do others go around, unbothered, carefree...
We may never know the reasons in this lifetime, but we know it hurts. Physically, mentally, emotionally and spiritually. (Yes, I feel it in my soul😔)
I do think that the torture I endured as a child is somehow connected, and I ordered the book "The Body Remembers"
I didn't get very far because it triggered tf out of me, and I don't have a therapist at present. I could tell I'm going to need help to get through it.
Anyhow, I love you all, and we're here. We're not alone, not really. There are thousands of us. We may be isolated (I also have agoraphobia) but we're not alone. It feels like we are though. Because most don't understand. But we do. When you say you're in pain, I get it. When you have to cry, I understand. You're not alone. I'm here, and I love you 🌹
I cried all the way home from the rheumatologist office upon being diagnosed with fibromyalgia. I thought no one would ever understand or believe me.
I cried in the office when told it was Fibro and not RA or Lupus as my mom died at 40 from them. COVID created my condition.
I felt exactly like you. I still have difficulty making my family understand
I diagnose fibromyalgia 😢😢😢😢😢😢😢😢 pain pain pain and fatigue
Yes 😢 am also suffering from fibromyalgia
Omg same, I bawled in her office and told her she saved my life.
I usually just say I have a neurological disability and my body is all messed up. If they ask further then I explain fibro as my best days feeling like I have the flu and my worst days feeling like I just spent the night rolling around inside the drum of a cement mixer
I usually say I feel like I got run over by a truck and I got tangled up in the axle.
I feel bruised and isn’t it amazing how much it sucks the energy out of you?
I've gotten used to explaining fibro exactly like this. Honestly I don't know what gets me more tired, trying to deal with the excruciating pain and get on with my life, or trying to explain for the thousand' time what exactly is fibromyalgia
It's actually classed as a neurological disease now
It's similar with long-term Lyme, chronic fatigue and chemical sensitivities. If you look normal people think you're a hypochondriac. It become so frustration that the person isolates themselves.
Yes. Because we don't always look ill or pale
Preach,brother!
Just cause you can't see our pain,doesn't mean we don't feel it.
SO FRUSTRATING!!
Beyond GRATEFUL!! I am recovering from an episode that lasted 14 days. Extreme body pain. I feel as if I can’t ever find the words for people to feel my pain. Fibromyalgia makes me feel ALONE!!!!!!!
I hear you! 💙🙏✨
I swear I feel you...
People tell me, my pains are imaginations cause I had rheumatism since I am 7 years old.
Now I am 21 years old and fight against Fibromiyalgia.
My body produce the pains I felt everyday, cause my body doesn't knows the meaning of non-pain...
This pains are REAL
My body really does them
But people think i just pretend I have pain
But every day I pretend I am fine...
Very isolating & lonely 😔
Yea man how we gonna heal man, when is it gonna happen
You are not alone right here
Gentle hugs
sometimes its just easier to say i have arthritis in every joint. people seem to understand why i am in pain then
I pretty much can tick all the boxs. I have a fairly high pain tolerance but the days I can barely cope are on the increase. My fatigue, pain and vertigo is soul destroying as by nature I'm a happy, bubbly full of life type. I can't remember the last time I woke feeling refreshed and moved with ease. People round me can't see it so not interested and doctors don't know enough about it to understand so conversations are brushed aside with medical consults pointless. It can be a very sad life for us sufferers. Love and light to all fellow sufferers. 💜
Hi
I've just been given this "title" of having "Fibromyalgia". And my symptoms, and beliefs about myself are the same as your own. Do you have any ideas about the causes...
Same...I feel and relate to every word you wrote, exactly 😣
God bless 💙🙏🌷
Hi there, I can definitely relate to you. Fibro and the chronic fatigue has totally changed my life. Like you, by nature I am a friendly bubbly person. It is however sad dealing with an illness that limits what you are able to do and if you do go out and have a couple of busy days, you end up paying for it by ending up in bed resting because you're exhausted and the pain is just too much. I hope you're coping and I'm sending my warm regards to you...
Same for me. Prayers for you.
I think the most exhausting part of it , is how much effort it takes to constantly fight the pain and brain
fog . Add the meds to the mix and brain fog just gets thicker . Tried meds , exercise , slow stretching , physio and nothing has worked . I have been fighting against the pain for most of my 63 years . No one knew . Then one day I just couldn't fight anymore . I have been using painting to help distract my mind from the pain . I was going strong . Or so I thought . I had Covid back in December and I'm not sure if it is possible , but 5 months later and I'm still in tears from the increased pain a lot . Unable to paint due to persistent spasms in my back . Even smoking pot and CBD oil and its strong stuff , no longer helps . Sleep ? I don't know remember what real sleep feels like . Just went through 6 days and nights on 8 to 9 hours of sleep . I also can't remember what it is like not to be in pain . Sorry , but knowing actors who have it doesn't help me in the least . At least they have the money to keep up with the expense of meds and physio . I fought my way out of the wheelchair . It's only been a few years but now have to really consider a mobility scooter . My walks are now too difficult to keep up with and I need those trips out for my sanity .
I understand all your pain since I am suffering from the same thing . A good night sleep for only 4 hours is a big happiness for me putting on weight because you can’t do enough fast movement and what you use to do before . Some of your own thinks you gone lazy and finding excuses so you don’t have to do anything .nobody seems to understand how much pain I am going through every day. I hope and pray for all fibromyalgia patients to get pain free time to have a good night sleep and enjoy normal things in life. May god make it easy for us all .
I’m too suffering! Since ‘72! Pain has progressed to the point that I suffer up to a 9 every single day. I can’t wait to die! I’m so sorry for you and all who suffer with ANY chronic pain. Sadly, fibromyalgia doesn’t kill you…😢
Hang in there . I feel you and understand . @@Alipotamus
Unfortunately , like you , my family just can't get it . I think I have less trouble with strangers , than with family . @@husnabegum6233
Yes, I hate those commercials and interviews with rich celebrities saying they have it, it doesn’t help, it’s like “inspiration (p)orn” where it gives people a reason to say, “but so and so has what you have, and they can do x y & z, so you could, too.” Like eff off, Lady GG, you’re not helping 😒 Most of us don’t have megabucks to pay for daily massage and spa treatments and staff to do all the physical labor of errands and chores.
It's the looking normal but being in a lot of pain. I get told all the time how I don't look like I have a disability and how I'm way too young to have so many issues. It's very frustrating
EXACTLY THE SAME FOR ME! 😮💨
It's the same here I am basically labeled insane by everyone, especially teens my age.
i explain it as a neurological, adrenal and psychological illness. in laymans term your adrenal systems fight or flight response gets stuck in flight making your body hypersensitive to any form of additional stressors only increases the amount of pain a person feels. your adrenal system effects the pain symptoms your neurological system sends to the brain so you feel more pain and then the psychological component is that stress and your mental condition exasperates your pain stimulus too. plus the component that chronic pain causes more stress and depression. making it a truly vicious cycle.
Simple. I say it feels like a Mac Truck ran over me, backed up and ran over again.
Your cast example is what I have been using forever. I have told people that if I had a cast or was in a wheelchair, people would automatically ask what happened, are you alright, do you have any pain ... but since it doesn't show on the outside, people don't understand it. Then I turn around and say 'if I was turned inside out like a sweater, you would be shocked to see what's there'. I also tell people that when I was younger, there was a commercial on TV that showed a beautiful woman but when she looked at herself in a mirror, there were huge scars there and it was to show physical or mental abuse, but people never knew what that woman was going through. Now though, I don't even talk about it. Easier that way.
I remember that commercial and I think about it often, because I completely understand exactly what that woman was going through... UNFORTUNATELY!
Diagnosed at 25 in 1983 after years of symptoms. Severe. Watched my son go thru the same thing. That hurt worse than my own fibro. He's gone--let pneumonia take him (refused all medical care because of depression. Which came 1st--fibro or depression?). Fibro is a very lonely illness. A lot of very nice people think you're an absolute crackpot milking the system to take it easy thru life. Sometimes they're people in your own family. Don't believe a word you say but too rude to bother looking it up. Too afraid they might have to try to care if they get a little factual fibro info in their brains.
I'm sorry to hear this. You're right, it is a very lonely illness.
Well I have fibromyalgia with cluster headaches and I’m not and never been depressed. So at the very least depression doesn’t come first.
@@sleepisthecousinofdeath7395 Thank you for sharing. I was wondering which came first for me (fibromyalgia or depression). So, at least I know my depression is not causing the fibromyalgia symptoms.
First, I'm so sorry about your son. What a loss...I know your pain. You're right about fibro being a lonely illness. I also suffer from agoraphobia so, very lonely...if not for my other son I don't know what I would do.
I cried my heart out reading your message, I'm also experiencing same thing
But no one understands it
They think I'm lying
I'm from India and people don't know what it is to live like this
Thank you people don’t understand you are judged on your looks pains are unbearable
I can remember when I first began experiencing the cramping and pain; which made getting up from sitting on the sofa extremely painful as I would have cramps in my ribs. My son happened to be nearby once when I stood and suddenly jerked and yelled because of the pain... he thought I was playing around. It took a while for him to finally understand what I was going through.
I literally have fibro and feel like I know nothing, everyday I'm finding out something I've been struggling with is because of my fibro
My husband always tells me it's in my head . That doesn't make me feel better.
He’s wrong! It’s not in your head, it’s real, and you deserve help
Same hear no one understands and expect me to do everything x gentle hugs xx
It’s my daughter who tells me that it’s all in my head . She is 24 years old can easily cook meals for herself but does not help me in any at all ! All I need is for someone to lighten my load an help me manage my pain, I am unable to do tasks to demand, I need to do things in my own time n not be rushed!🤬
@@khalidaanwar1054 send your daughter a series of RUclips videos about fibromyalgia, she'll soon realise how wrong she's been and may even show more empathy. At 24 she should be cooking not only her own meals but yours too!
@@linda6254 sweetheart at her age she can easily google the condition on the internet , she has the intelligence to know fact from fiction but chooses to act like a stroppy teenager! But alas I have been managing the condition mulch better last few weeks!🥰🤲💕
I’m called lazy, and unreliable. I am scrutinized and mocked.
I’m so sorry. God knows the truth. I suffer as well. He loves us.
Most of us are. You will have friends, family, and doctors turn on you!
Same💔😘😘
You are Not alone 😣...💙🙏🌷
I am sorry,we understand ❤
After being sick since 1997, I don't waist my time explaining. Most of the medical field is still ignorant on this subject. How do we expect the general population to understand if the medical community doesn't?
It's the little things. I hit my shin with a restaurant style dish pan, it brought me to tears and made me nauseous. A yr ago I wouldn't have even noticed. But I can't explain it to others.
'Lower your expectations of me'
Lmao I don't wanna be in the fibro war or be a warrior I am so fucking done. Fucking fuck this shit.
My daily rant!!!😂😢😂 Then I say, Fuck you Fibro, you FUCKEN FUCKER!! I AM A FUCKEN WARRIOR 😂❤😂
I have fibromyalgia...it is very painful.
Great way to explain it. It's awful. Pain and not being able to sleep.
In 1990 I started having major full body pain and fatigue. A rheumatologist diagnosed me with Fibromyalgia but my primary care physician told me “There’s no such thing”. I instantly became one of “those” patients to him.
I've been dealing with it for 17 years, took 15 to get a diagnosis. All of my muscles hurt all of the time. Constant pain, My joints are stiff. My mood and memory are effected, I'm always anxious which puts more tension on my muscles. I can't even kneel on the floor if I drop something cause it's too painful to get up. I have a 3 year old son and it restricts me from activities with him. I also have 4 herniated discs in my lumbar spine and sciatica. I'm diabetic which doesn't help with the nerve pain. And since I started getting symptoms the pain has been so overwhelming it's limited physical activity. I'm overweight which puts more stress on my body. The cognitive decline may be the worst part. The fibro fog makes me forget and skip over things effecting my work. The fatigue is crippling. Inside my mind i'm moving 1,000 mph. But physically I'm moving slowly because I'm in agony all the time. My muscles hurt to the touch and are so weak that I can't even flex my leg muscles. I can't even do a push-up cause so as I put strain the pain becomes overwhelming. My muscles cramp regularly. The depression, fatigue, irritability sucks. Sometimes I lash out at my girlfriend and son over the smallest little thing. And they don't understand. I tell my girl all the time that I wish she could feel what I feel for one minute , but I don't even wish it on my worst enemy. The decline in dopamine and seratonin is evident. The pain meds don't work anymore becuase there's no dopamine to release. All my life I was looked at as a strong guy, capable. Now I
feel weak and useless. I rarely sleep, when I wake I'm tired and ready to fall asleep throughout the day. I would kill for just one day without the pain. One day of feeling normal like I did pre fibro. The fact that no one understands makes it all the more frustrating, they think you're just complaining. So you're not alone people. I hope things get easier and keep doing what you can to lessen the symptoms......
It's so hard to go on, it's a horrible condition that no one understands and we are just labeled insane. I'm only 17 and I've had it my whole life, I know I won't graduate and my biggest dream in life is to get married and have kids but how would I ever support anyone, and why would anyone ever be with me?
I hope we all can get through life and be happy.
You've described it exactly. Fibro sufferers don't want pity or attention - they just want people to believe them. It's devastating to be invalidated especially by your own family.. Please take care ❤
I am from Croatia.After i had brest cancer and kemo i started to have pain all over my body.Even my family dr.did not hear me .I thought it was the kemo.But it geot worse every year .I am all the time so tierd,and sleep a lot.I can work anymore.I have so much symptoms of fibromialgia.God thanks i have no hadeeks.I dont now how to explane to my doktor.I am so sad and depressed.
It’s like trying to walk with what feels like a hundred wet blankets all over your body and you’re so tired but you’ve still got to go on with the blankets .And the pain you’re in is indescribable but you’ve still got the weight of these blankets. It’s horrendous
Thank you. Its so hard to explain to people without them thinking ur lazy. Plus i have thyroid disease that for the first time in 10 yrs needed a change in medication. I swear i can sleep 15 hrs a day
Telling my sister I have a flare up of it, she doesn’t understand, the pain it causes how your brain just won’t function due to the pain. I feel like a fraud but know the pain I feel is real.
The closest thing I've heard to what you said was " it's like a house alarm that malfunctions randomly, it causes panic when there's nothing to panic about" the body's pain system alarms because of a malfunction in brain chemicals.
Thank you It was helpful however it sounds complicated to use all that wording to some people but the idea is good. What make it complicated is that some times I look so well and am so active that .makes people confused and believe that I have the control or I just have emotional issues only
I have recently just started to educate myself on fibromyalgia because my mom has been dealing with it for at least the last 38 years (at least ) and I just feel like I've been very unsupportive and just very nonchalant or else even kind of rude to her when she has been in a lot of pain.. I've been trying to find a way to show her that I'm really sorry that I've not been kinder or empathetic or more sympathetic to her situation because she's not a complainer at all but I can see myself rolling my eyes at her frequently when she'll say Oh honey please don't please don't touch my arms Oh my gosh Oh my gosh that hurts so bad that you have no idea how that feels It literally feels like I've been hit by a truck and I'm like Oh come on mother Let's get real or should I can't sleep I've got to sleep in a different room than my stepdad because any like little move that he will make if she can't sleep if she's not feeling well or if she doesn't get a decent night sleep or anything just her body is unbelievably sore or in pain and I just wanted to tell her that I've admired her for being an achiever a high achiever no matter what she's never made an excuse for herself not to be a full-time mom and a full-time work career woman and a very successful woman Who doesn't complain and who pushes through no matter what and she says that there's not an option for her to not be able to do these things because she had to be x y and z and if she didn't do then he was going to do it no one's going to put food on her table to feed her kids no one's going to take her kids on vacation every year Noah's going to have Christmas gifts under the Christmas tree and have nice Christmases if she didn't work hard I'm just at this point in my life where I'm thinking back on a lot of things that I wish I would have done different or I wish I would have treated different people in a more kind way and so I was going to share this video with her actually after I finish my comment because I just wanted to tell her that I am sorry for not being kinder so I really appreciate your video explaining this you don't understand how much it's helped me and how much it means to a lot of us who have been struggling with just being unempathetic which is so unacceptable in the first place especially as somebody's child or parent to be treating them without kindness or else treating it like it was no big deal and this doesn't need to have me dragging on and on to try to explain myself because everybody here knows exactly what I'm talking about . Thank you again. God bless all of you .
Punctuation Matters!
Thank you for understanding. I have a daughter who completely denies that there is anything wrong with me and has completely rejected me because she thinks I’m a selfish attention seeker. It takes a lot of courage to own up to being a certain way and I applaud you for being kind and understanding. Take care of your mum.
God bless you! You're mom will be so grateful for your understanding!! I worked hard many years in horrible pain and am still trying as much as I can . It really does hurt as much as someone with fibromyalgia says it does. The brain fog is horrific!! My kids were always wonderful growing up and I'm so thankful. My youngest daughter now suffers with it and has for quite some time. I'm so glad you are looking to understand your mom's pain, she will be so so grateful!!
I was diagnosed with Fibro for over 25 years. I had the test in the Doctors office with the pressure points etc. Since I went Carnivore and got rid of all the carbs, sugar, frankenfoods, it is gone. No more pain, nor more fatigue, no more brain fog, memory etc. No more Gerd. No more high BP or BS. I sleep so good now I am even off my cpap.
And if I had any doubts, all I have to do is fall off my Strict ketovore diet (mushrooms, avocado, garlic and onions are ok) and eat potatoes or veggies or chips and I am hurting all over again. So this is not just a one time thing. The last 8 months I have cured my fibromyalgia with a carnivore diet. Thank you Dr. Ken Berry. Thank you PHD community. Thank you Dr. Chaffee. Thank you Dr. Baker.
People don't really want someone to always show up at a gathering with you being anything less than 100%; and because I'm not ever myself anymore at 100% because of fibromyalgia, neuropathy, arthritis, diabetes, high blood pressure, thyroid hormone imbalance, then I might have to explain... Meh! So, if I have to be involved in a family thing, but can't be there 100% healthy, and they wonder why, and I have to explain the list, I say this before I start my conversation.... "I'm not complaining, I'm just explaining."
I just don’t go.
I have all the same illnesses you listed. My kids are all adults but they don’t understand what I am going through because I may not look sick. I just put on a brave face and stay quiet and not complain. There many time I can’t get out of bed and I am in so much physical pain. I have always been strong and independent so my kids see me that way. When I babysit my grandkids 11y 10y 8 months old it take me 3 day to recover. And that not even 100% I know there is no cure, but I just don’t know how much I can take. I am just so very sad.😔
@@connie187 do you know when yours started? I think I can almost pinpoint mine down to the first flu shot I got back in 2004. Then another one in 2005. I felt like I got the flu after the shots and never got over feeling like I have the flu. I never got another one after that. That said, I didn’t get this vaccine either because of what the flu shot seemed to do to my body. Did you get it? Do you feel worse now if you did? I’m curious because I don’t want to chance feeling worse than I do now. 🥺
@@torreycat7716 Hi Tory yes I did get very sick after the flu shot in 2018 for about 7 months. Headaches weakness and very lethargic. That was my first and last flu shot. Before that I was very heathy and active. That why I will not take the Covid shot. I also noticed this year my joints crack and snap a lot especially my wrists.
@@connie187 makes ya wonder, right? I’m 67, and had we ever even heard the word fibromyalgia before the year 2000? I hadn’t.
I've been diagnosed at 16 last year, I'm still studying this condition to understand better what is happening to my body...
It's awful I was diagnosed when I was 15, two years ago. Hopefully someday we can get the help we need.
I got diagnosed 3 years ago unfortunately im no longer able to work, which is deeply annoying as ive worked since i was 19, i also get itching sensation which keeps me awake at night, i take paracetamol daily, indomatacin daily, gabapentin and tomorrow i start morphine and stop tramadol as the tramadol no longer works. I find its like ive done too much at the gym my muscles and joints constantly hurt n now maybe due to lack of mobility i get fluid on my knees, ive had mri after mri nothing flags up out of the ordinary. I dont have a clue to the cause i was working on a ship discharging cars then all of s sudden my body started hurting next thing i knew 5 hrs into my shift i could barely walk i was in agony nearly crying so got in my car sat n cried n went home. I was in bed for 3 solid days n took me over 2 weeks to be able to leave my home. Anyway after several tests scans n doctors appointments they came to the diagnosis of fibromyalgia the last 3 years its gotten worse and this winter (normally my favorite season) ive been in chronic pain cold weather no longer agrees with me. Though i dont let it beat me, i still drive and i cycle to keep fit. Unfortunately after a 7 mile bike ride im asleep when i get home n housebound for a week. I find explaining to older generations harder as they are more arrogant n say im making it up. Ignorance is a better word. Anyway i do detox my body from pain relief regularly to avoid addiction.
While it makes a great deal of sense, I haven't seen the claim about serotonin+ dopamine +endorphins before. I'll take a look through some of your other videos to see if I can find something you've already put up, but do you have a source for this? It's intriguing, and I know you want people to sign up for the series but I often prefer to read and cross reference. Thanks! I really like the practical stance you take to communicating fibro.
Same idk if that's accurate but boy was it convincing! He's right!
This is very accurate! Why do you think they prescribe Cymbalta an antidepressant for fibromyalgia ? Because it regulates seratonin, dopamine, and endorphins which are released by the brain during vagus nerve stimulation, orgasm, sleep, relaxation, meditation, yoga, exercise and other pain relieving processes that the body goes through.
Must agree with you❤
I wish you’d mention it’s not just pain and made harder to explain because the symptoms are so varied and sometimes very odd e.g I can’t walk into restaurants and have to walk out again because the smells overwhelm me.
Wow I am prone to smells. Thanks
Wow. That’s a great medical explanation.
I have had fibromyalgia since’72. The pain has progressed to a level that I have been suicidal for 23 years. Sleep is frightening, pain is everywhere ! Inside, outside and head to toe! It DOES feel like I have been slammed by a semi truck and thrown through the air and then slammed onto the concrete. I’m not joking! Morphine helped but I can no longer get it or anything that helps. I’m too humiliated to beg the doctors. I am treated as if I am a hypochondriac! In all these years I have only gone to the ER once! I have always had insurance and this has been a terrifying hell.
I explain the pain in my joints (where it is the worst for me) as squeezing, burning, aching, dull, and sharp all at once. I’ve had fibromyalgia for 6 years, diagnosed 2 years ago. Mine was caused by MRSA that turned into sepsis and toxic shock. I got to the point where I could hardly walk before doctors started trying to figure out my problem. Now I see a rheumatologist, who is the one who diagnosed me.
FINALLY Someone explains this I am so glad!!! Thank you!
This really helped me, thank you!!
My in laws are like “ I have back issues and just use a walking stick and don’t need a wheelchair to get around” but there back issues are not fibromyalgia related mine are.I am a wheelchair user because the pain in my ribs affect me from walking pain is always 10 out of 10. I get given strong painkillers which haven’t helped my pain is still there. I also get bad weekly migraines aswell as rib and knee pains. Even my family have laughed at me calling me “fat and lazy” and said I’m using excuses to get away from getting a job. I’m told I’m not fit for work from my work coach anyway and my family say I’m just being lazy and that I’m lying about my pains when I’m not. I sometimes wish they could experience my pains as they wouldn’t be laughing then they would understand my pains
Yes my ribs are always killing me and my leg and arm (only on my right side )
I have neck pain and migraines, I limp now and was just thinking that I may need a wheelchair or walking stick and I’m only 22
I understand... going through the same. Sending cares n prayers 💙🙏✨
I have non bacterial osteomyelitis since I am 7 years old and when I was 21 years old, doctors said I have Fibromiyalgia cause my body is used to have pains and thinks it's a normal feeling, actually yes I am exhausted, I took even chemo medications and injections with antibodies against my immune system
Thank you for this helpful explanation. I look forward to learning more from you.
Been trying to articulate and earlier today I thought “feels like everything’s ‘’sprained’ “
I am so grateful for your video. I also have other conditions that make it so hard. Thank you so much for your work.
Thank you from Amsterdam. Very helpfull advice 🙏🏼
Excellent video
ABSOLUTELY!!!
Thank you for this video.❤
Thank you. This script will help a lot ❤
I wish people would just accept that someone might just be in pain bc of how their body is and accept that instead of treating you like a criminal who's just making excuses. Like can't you just say I see and wish the pained party all the best instead of acting all suspicious.
So true....💙🙏✨
Great video
My family see my pain as acting out and lashing out to them as just being mean i have suffered from this for a long time and now that I can't do the things that I did for my kids when they were little I'm getting rediculed and ignored and feel like they are trying to get rid of me. I've tried every diet and exercise and all have failed I've even lost friends because of my Fibromyalgia and they all want to fix me and change me and if I don't do what they say they think I'm just being lazy I'm so Depressed
I see you. And I understand. I’m so sorry.
Same here hun (hugs)
🌸🙇🏼♀️ I can relate too Susie. With this kind of pain , it’s so hard for others to understand the what and when and how much… Like the weather; it can act like a random, complicated, cruel beast, that doesn’t make consistent sense, YET. I am hopeful that there will be more answers/ solutions in the near future. You aren’t lazy. Pain can bring out our worst. When I have some energy, I focus on …working at teaching my teenagers to try being a bit more compassionate and I try to remember to express my gratitude when they make an effort to help and acknowledge that I DO depend on them to do more things for our family right now. It isn’t fair, but they can see that I am like a 🪁 kite, some days I drag, and some days I get a bit more off the ground. I am trying to keep looking UP to find where I can best apply my energy cycles in the most efficient ( smaller )bursts, without crashing to the ground and laying there for days. 🌬🎐 Here’s wishing that you have a bit more wind in your sails than you did 9 mos ago. Gentle 🫂 hugs.
@@heathergreenhalgh2289 thank you so much for your kind words I am feeling better on new meds my doctor sent me for my thyroid it's a work in progress and I'm still trying to make my kids and husband understand exactly how this disease is because one day they can see me cook and run around like before and other days i don't want to get out of bed but I've always tried to stay strong in my faith and teach my children compassion but seeing that they are teenagers maybe it's hard for them to show empathy towards me plus they are always used to me doing everything for them. I'll keep using my faith and try to make them understand and pray one day they can see what i go through everyday . Well wishes to you too and God bless you and I'll be praying for you too
@@heathergreenhalgh2289 being a kite with just enough wind to drag across the ground as everyone else is fluttering in the wind. That explains my fatigue quite well. Hope you have a great day.
Thank you..I'm so glad to bE able to explain. I appear lazy at times
Thank you.😊
Thank you
Thank you.
Chronic pain, lack of sleep, and extreme exhaustion. Can’t work out and I’m packing for a move from VA to GA next week. I hope I can push through the pain so I can get everything done😩
I have all the symptoms of fibromyagia but my doctors wont lieasen to me and no matter how many specialist I go to tnry still cant figure it out. I have been going to doctors all over the place for 14 years because I never stop hurting. And they still cant diagnos me with anything, everyday I feel like im dieing bc of how much pain im in and nobody will lieasen. I just hope somebody will figure it out, I wznt to know what it feels like to have no pain. I wish I was normal
Brandi, I hope that you are doing better! I'm pretty sure that I have it too, from an accident 3 years ago. I went to see a doctor and I asked him about it and he basically said only women get it and it is all in your head. I wanted to punch him! Sure, mainly only women get it, but 13 percent of men get it too. Just like alapecia, mostly only women get it, but I also have alapecia. Have you tried a rheumatologist? I have an appointment with one on May 15th. Hopefully they can help me. I haven't worked since September 7th 2018 because of all my pain. Started out in my hips and lower back. Now it has spread to my whole back, neck and shoulders and elbows. Stress definitely makes it worse by far! Any way, I really hope that you get diagnosed and you get better!
Ever since I had my last child I've been having symptoms... my mother and mother in law said to get checked so I go to my doctor asking for him to check he did all the common test for pain and i past them... so my doctor blamed depression... so I was like "i don't have fibro?" He said well let's treat the depression first then go from there... i never went back to him because I'm completely fine mood wise... as long as I'm not in pain and feel myself... I had depression after having my first child but I took on that battle before... I didn't have pain then... then everything was good with my second child... no depression bounced back faster than my first child in fact shortly got pregnant again (3rd) then after having her it's like I never bounced back... I've continued to have that after birth pain then eventually spreads through my body... hits me most when I do too much one day or it rains or snows or we get a cold front... yoga seems to be my moment of escape but sometimes I can't even manage that... I may not have it but I'm living with some chronic pain or illness and that's my goal is to defeat it by myself this year...
@@michaelhorn9114 don't accept that only woman get it. I'm an example of a diagnosed male. See another doctor, that one needs to go back to school.
@@amandadailey3491 go to a Rumitoidologist, get checked for psoriatic arthritis or ra. You're symptoms sound familiar. Have you ever had chronic lowback /hip pain sacroiliitis, pink eye, psoriasis or family history, planter facilities, changes in your nails . A swollen joint or entire finger or toe. Or Fatigue. Good luck 👍
@@trentgay3437 what do you mean changes in nails?
Almost failed 12th grade cause of this. Biology was my first period. I could never make it in time due to the pain i woke up with. Went from dermatomyositis, to fibromyalgia and osteoarthritis. Have had IVIG infusions, plaquenil, Tylenol 3's, Percocet, Flexeril, methotrexate, anything you can name I've been on and absolutely nothing subsides my pain AT ALL. It's miserable to live with. Nobody understands cause I look "normal" Been called lazy more than I don't know what. I'm a single mom of 2 boys with no family to help. I hope there is a cure one day. I wouldn't wish this on anyone.
I fully understand, it's exactly the same for me, my heart goes out you. Mine started with polymyositis..... long story. Take care of yourself, plenty of rest❤
I have fibromyalgia, M E arthritis in really all my joints, scoliosis and a bad hip + crushed discs in my back. My family is not understanding at all and think I'm being lazy even tho I do as much housework as possible x
I understand, going through same... sending cares n prayers 💙🙏🌷
@@EC-yd9yv Same back to you ♥️
I swear I feel you soooo much, when I clean up my room, after every 5min,i need 20min rest 😂
People be like
Don't sit on your room, you said you wanna clean it
Damn I feel like a truck overroled me, give me time to stand up lol
Big thanks to you Dr emuakhe from Africa for having every criteria to human,you`re truly an epitome of good treatment
I have fibromyalgia, and the way you approach this is weak by victimizing yourself which will never help.
Fibromyalgia is the worst-best thing that happened to me. It became a friend that taught me to appreciate how beautiful it is to be healthy and pain-free and take full advantage of the days where there's no pain.
It teaches you who the real friends are around you. Those close don't require much details, they just trust you, believe you can handle it, and know you will ask help if ever needed. The rest of people are noise, cancel them.
It educates you how important it is to prioritize your body. Sleep well, eat healthy, exercise and your body will lessen the pain. Keep complaining about it, do nothing while waiting for a magic pill, and hell will be at the gates waiting for you.
Everyone is suffering, you're not special. If you didn't have the disease you will complain about another. So focus. That's the philosophy of any chronic condition. So embrace it and make peace with it. It's a choice.
Okay
I just call mine, "Evil Spirits"! Seems about right.
My fibro came with my RA. I think it’s a common add on to most Autoimmune diseases. Unless you have you don’t have any idea how debilitating it is.
I think most difficult thing about Fibro is its random flair ups. I can't make plans for anything without worrying about whether or not I can keep the commitment. I didn't realize that this disease can stop me from even walking due to weakness in my limbs. It is a terrible invisible disease. You just don't know day to day, moment to moment what you are going to deal with.
I am starting to wander the use of put on a soft cast or maybe a cover my head with the old style white bands, when you had a head injury every time I go out, or connect via video conference…invisible pain, not invisible anymore
Sorry for the spelling, my autocorrector, does a terrible job
And I meant to look like this:
🤕
Liked ,shared
I want to scream and cry while watching thia explaination. People have difficultly to understand ad even u trll them then they come upto advices, relax, eat more fibet food, excercise and bla bla. I have mood swing as well that 3very week i go into lock zone and families and friends doesnt understand and thinks i am upset that they are seeing me, coming to my home or visiting me. They have almost no undrstanding and i dont want them to know more that it is also a mental problem as well. Atleast i talk to my husband
Refer them to articles. If they don't get it. I'm so over explaining....
It's a symptom . Like neuropathy. fibromyalgia / muscle skeletal pain . It's doesn't stand alone. Arthritis , pitched Nevers ....
"i'm depressed, overweight, inactive, i east junk food, i take valium and somnifère, but must important I'm diagnosed with fibromyalgia"
I'm convinced I have this but the doctors say they can't diagnose it
Is it really a deficiency of dopamine & endorphins? How can they test for that? I’m at my wits end w/ having fibro for over 25 yrs
Suggest getting onto the internet - may sound weird but it works. Sound therapy -Bring in the energies of dopamine/serotonin. seems to help. also try other internet healing sites for pain and inflammation. Take magnesium/calcium Maybe this is a way of getting you to think a new way out of this. there is always a solution. best of luck
🌷You are Not alone..20+ years for me, also def at wits end😣 hope this finds you doing better?! Cares and prayers. 💙🙏✨
When he said hug it was all over believing him
I could hardly get out of bed, yet was told I checked it out. You need to exercise more, eat right, take meds. Them they just stay away, they had better things to do.
"Well, you look fine to me." "Yeah, Dr. Mom, let's continue on with your supportive behavior. It has been so helpful in the past." Until her dying day, I looked fine.
I have a friend who keeps telling me to get out more and it’s frustrating and ugh and pisses me off
I dont know where it came from ?? But i wish they would take it back??
Yes
Truly no one believe the pains and sufferings
Ppl think, i am taking excuses. Or being dramatic .so miserable along with do much pains, fatigues and endless difficulties unable to explain.
What are you taking about it never goes away. How did you get rid of it sir ??
are you the guy from the movie birdemic?
I just was diagnosed 3 weeks ago. I think ive had for at least 10 years. My family is unsupportive. My children act disgusted with me.i feel i am on my own island..alone and in pain.
I’m so sorry. You can find support with complete strangers. I support you❤
Thank you. Its so nice of you. It makes me feel better to know there are people out there who can care about others.❤
My family told me I was a user and scammer when I applied for disability benefits it hurt my feelings so bad.
Except even a gentle hug hurts.
Many days I plug away at working full time and elders expect to be looked after I did for 8 years and enough is enough meaning I was diagnosed 30 years and my family still doesn't understand as well as many doctors who believe it's psychological and not medical and I often hear these words that's a lie and it's all in your head
It's a mitochondria issue but still no answers
Thank you, but it doesn't help me in Malaysia. The fibromyalgia awareness in my country, not all will understand...🥺🥺
It seems like if I have 2 really good days ,I pay for it with with days on end if feeling like Ive been beaten for hours with socks filled with golf balls.
I took sugar out of my life and certain foods and it helped..but pain meds are not prescribed...people really dont understand...
Agree cutting out sweets helped me
ive been called handicap treated like im severly mentally impaired called lazy stupid etc i say im none of these things i have fibromyalgia
Maybe look like this 🤕
Said can you fight it
As a manager, I 100% disagree with that script. Word play is difficult. It should set the mood to something more stable rather than "lower your expectations of me". Change it to, "i may find certain things i could normally do, difficult. I will try my absolute best and will communicate if I need any further assistance or extension."
It shows that your more in control, even while saying youre 100% NOT in control. 😂
Taking it on as something you are trying to learn to coap with, vs wording it as if youre using it as more of an excuse to get out of something, shows alot in the work force, imo. 🤷🏼♀️
Drs told me I have this and im trying to not find it as a drs excuse for not trying harder. 😅
How about some advice on knowing when and where to stop with testing for everything else in the world and asking 17 different opinions?