10 unexpected struggles of living with Fibromyalgia
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- čas přidán 22. 06. 2024
- If you have been diagnosed with Fibromyalgia you are familiar with the many symptoms of this syndrome. However, people who live with Fibromyalgia struggle with much more than the listed symptoms you will find on WebMD or Mayo Clinic and these are the unexpected struggles of life with Fibromyalgia. In today's video, I cover 10 unexpected struggles of life with Fibromyalgia that are as challenging as chronic pain.
#Fibromyalgia #chronicillness #chronicpain
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a b o u t m e
I’m Daniela I have been diagnosed with several chronic illnesses. I look normal, I do things, have a job and go on vacations, but inside I'm sick. I live with several chronic illnesses and they affect my daily life. I am in constant pain and struggle with brain fog. Although I'm constantly looking for new doctors, new treatments and solutions I have also accepted my illnesses and do not let them define me. In this channel, I share a little bit of everything. Information about my conditions, my travels, my dreams, my journey, my life. This channel is about life through chronic illness lenses. Come and join me and see what I'm up to lately.
Check out those other videos about my chronic illness story:
👉🏻 MY FIBROMYALGIA STORY
www.youtube.com/watch?v=mWb_r...
👉🏻 IF YOU COULD SEE. MY ILLNESS
• IF YOU COULD SEE MY PA...
Chapters:
00:00 -01:21 - Intro
01:22 -05:28 - being unreliable
05:29 -09:20 - dealing with my hair
09:21 -11:22 - being in crowded spaces
11:23 -13:17 - unable to be fit
13:18 -15:09 - lack of energy
15:10 -15:50 - unpredictable symptoms
15:51 -19:07 - not being believed
19:08 -19:53 - how expensive it is
19:54 -21:27 - describing my pain
21:28- 24:27 - how time-consuming it is
24:28-24:29 - Outro
I feel like I'm running a fever alot. Achy legs and bones in my legs kill me. Upper back achy. Bloated, creepy crawlies, feet and hand pain. Neck pain, wrist pain. I also have osteoarthritis all my fingers are knotted. Hips hurt. My fingers hurt everyday and the bottoms of my feet.
I hate the feeling of running a fever! I feel the way you described when it rains or any big weather changes for that matter. Everything hurts. It feels deep in my bones.
Sorry you have all those symptoms @Sand. I get the creepy crawlies too-I think that's the fibro for me.
I forgot about this one. Smells are a big thing with me. I get nauseous very easily. I smell things nobody around me can smell. Lol Dizzy spells a lot. I take motion sickness medicine when I’m feeling this way and it helps.
@@sandyandies8309 yes, I smell things like nobody else can too. People think I’m crazy!
Sounds like my life
You were an incredible communicator of some of the major problems I had with Fibromyalgia. I really hated to disappoint so many people by being unreliable. I had Fibromyalgia for about 8 years and some medications helped me be able to work. However my company switched my hours to the late night shift by myself in a place that can get critical fast. This switch caused such stress that my brain fog just took over. My husband and I agreed it was time to retire. I was 62.
I remember many Sundays I would shower, fix my hair and then get right back in bed exhausted. So many people just can imagine or believe that you are not faking or lazy. I pretty much became a hermit. Please be careful with medications! I just kept adding strong addictive meds until I almost went crazy! With help from a new doctor and my daughter I was able to eliminate many overpowering drugs. My body and mind are much better at 70 years old. I now am gentle with myself and gradually rendering society. May God bless anyone with this painful, depressing,mind stealing and heartbreaking syndrome.
Thank you for sharing your personal experience with fibromyalgia. You have faced so many challenges and had to make tough decisions regarding your work and lifestyle due to the impact of this condition. It's unfortunate that many people struggle to understand the reality of fibromyalgia and may doubt its debilitating effects.
Being cautious with medications is a very important point you made. Finding the right balance and working closely with healthcare professionals is essential to manage symptoms effectively without relying solely on overpowering drugs. It's inspiring to hear that you've made progress in this regard and that both your body and mind have improved as a result.
Living with fibromyalgia is a painful and isolating experience, and it's important to be gentle with yourself and prioritize your well-being. Your journey and resilience serve as a testament to the strength and determination required to navigate this syndrome. May you continue to find healing and support as you gradually reintegrate into society. Sending you warm wishes, and may you be blessed with better days ahead. 🙏
Hi barbbaily, you said had fibro, so are you all better now? What did new doctor do to help with pain? I am 65 and yes pain has gotten worse over the last 30 years. In the beginning it was just a bad week like once a month no big deal. Nowadays I can't remember my last good day. I have fibro and Lyme disease plus gastric issues so if it isn't one thing it is another. And hate disappointing people but they have dropped me like a hot potato. She is always sick why bother to ask, I get it but it hurts. Wish for someone just to sit with me and watch a movie. Quit Drinking that is another good way to become a hermit. I really wish I could find someone to go to town and do my grocery shopping. Such a long drive to town, I should move to town I know. But how ? takes energy to sell a house pack a house, and find a new house. Need a handyman too. my house is falling apart. I pay but seems nobody wants to do handyman jobs. I just have to take it all one day at a time. Depressed due to pain, was not depressed before pain. how do you get a doctor to understand that small detail?
I am going to be 60 in the fall 🍂🍁🍂 it is my favorite time of year I make it my happy place even if I'm feeling like a hot mess! But I'm also getting to the point in my age that I'm feeling too old to keep doing this it's been since 05 ☹️ I also have Parkinson's RA Sjogren's and Lewy Body Dementia
(think Robin Williams)
My rheumatologist has me doing PT and besides daily Bible reading I've started counseling for learning how to do coping strategies aging is different on the brain 🧠 I find and I stress over my house falling apart too I live in a small town where nobody wants to do personal care in home service
Maybe my comment might help someone I don't know but there is hope we are never alone 🙏🥰 just keep swimming 🐟
Girl, you are Not alone! I’m setting here, listening to you as IF you’re talking about me!!😮 I’m diagnosed with SLE Lupus, Fibromyalgia, Mix Connective tissue inflammatory disease. So I’ve been through everything that you are talking about and more… My only ever and ultimate help is my Faith in Jesus. I’m so Grateful that in my weakest moments, He is with me to give me strength to carry on. I’m Praying for you all my Sisters.🙏 Shalom.
Thank you so much for sharing your thoughts and experiences. It's incredible how many of us living with chronic illnesses can relate to one another's struggles. Your faith in Jesus is undoubtedly a tremendous source of strength, and it's heartwarming to see the support and prayers you're offering to your fellow sisters going through similar challenges. We're all in this together, and your positivity and kindness shine through. Shalom to you too, and may you continue to find strength and support on your journey. 🙏💕
.... Pretending to be fine at work, because of being afraid to loose the job. Being afraid of not coping with the job every day and days in advance ... will I manage next week? ... Doctors saying: "Okay, this is not an emergency, come in next week ... . " Being afraid of the coming night: "Will I sleep better this time? I'm so tired..." Waking up and not going back to sleep for hours and you know, you have to get up and work... .
I hear you. The struggle to balance work, health, and the constant uncertainty is tough. Pretending to be fine at work when you're dealing with health issues is a heavy burden to carry. I know it too well. I hate nights! The stress that you need to sleep and rest only lead to more insomnia and more stress. It's viciuos cycle.
I'm sending you strength and positive energy during this tough time. 💪💕
I feel this. It's where I am right now
I am a man and i suffer with this bad condition, but the worse part is it gets worse with age, my prayers go out to all with this horrible condition, thx matt P S your hair looks fine..
I'm sorry to hear that you too are dealing with fibromyalgia. I am also finding it is getting worse with age. I know it is not considered a progressive condition but for me being close to 50 and perimenopausal has created havoc in my body and my fibromyalgia has taken the ride.
I hope you find my videos of value and I would love to see you around.
Thank you for your kind comment about my hair as well. Take care, Matt!
You're right! It does get worse as you get older! I have two disabled sons in their 30s, and I do everything for everyone! I'm so tired. Some days, I can barely take care of myself, let alone 2 dogs and a house plus the boys!!!! Now I need a knee replacement! HOW???? Good luck. I no longer have any friends I hope you do!!!
I'm also finding it getting worst as I age as well. However I find If I exercise daily for 3 hours, it helps tremendously, and the pain lessens. At first it was extremely hard to exercise, then it was easy. However I stopped during the c word pandemic, so now I'm having a hardtime getting back on track. However slowly working back up to where it's no longer bothering me as severely. I refuse pain management because I'm a nurse and I want to continue to work as I can
It doesn't have to get worse with age!
Mine got better. I space and lace and cleaned up my diet and it's made a HUGE difference
Thank you Matt😢
One aspect I experience with fibro that I do not hear others talk about is medical uncertainty. To be more specific, when to attribute a problem/symptom to fibro and when to recognize it as something more serious or worthy of a visit to the doctor. I have had a new issue arise only to find out there is no evidence of anything concerning, but I have also ignored a symptom (new pain) only to find out it was not fibro-related and I should have sought medical intervention sooner.
Absolutely, that is a very valid concern. I can definitely understand the medical uncertainty you experience with fibromyalgia. It can be challenging to differentiate between symptoms that are related to fibromyalgia and those that may indicate a more serious underlying condition. It’s so easy to downplay or dismiss symptoms as being solely related to fibromyalgia when they may actually be indicative of another health issue.
Living with fibromyalgia means navigating these uncertainties and finding the right balance between self-awareness and seeking medical attention. Remember that you know your body best, and it's important to trust your instincts. It's essential to strike a balance between self-monitoring and seeking medical intervention when needed but when in doubt, seek help.
I've experienced that several times.
@@irenethomas5324 It can be very frustrating.
So true. Whenever something new comes up I need to give it time to make sure that it's either Fibro out something else.
As a 24yo male student, everyhting you listed is true 100%
- Being Dependant -> sometimes you just can't
- Not being believed -> thanks for that, with my diagnosis its not a problem anymore
- Being Unreliable -> non constant flares
- Lack of Energy -> impact on mood
- Can't be as fit -> frustration
- Pain all the time -> Limit your plans and impact on mood
- Unpredictable symptoms -> can't do what you want when you want
- Lack of medical research in the field -> not specialized medication that helps really
All of this has such a huge impact on your mental and it feels like you're not living anymore but just a spectator.
I just wish I could disapear, being in constant pain is like living in hell and I don't wish it on my worst ennemy
Thanks for this video, to all my fellow sufferers, I love you, you're strong and never give up, sometimes you have good days and they probably worth living for.
To those who have an affected loved one, please cherish and love them, help them when in need it would change their life forever and they would never be able to pay back
It's incredibly tough dealing with the unpredictability, the pain, and the way it seeps into every aspect of life, making us feel more like an observer than a participant.
Thank you for sharing your thoughts and feelings with such honesty. You remind us of the importance of compassion, understanding, and never giving up. Let's keep supporting each other, celebrating the good days, and finding strength even on the hardest ones. Sending you love and support. ♥️💪
@@tt_looking_glass Thanks you for that amazing answer, I wish you all the physical and mental strenght you can get
You are the first person I’ve ever heard to talk about exercise intolerance. I’ve had that for years and doctors look at me like I’m either lazy or pushing too hard. I resonate with everything you’ve talked about here. You are heard. ❤❤
Exercise intolerance is something that's not talked about enough, and I completely understand how frustrating it is. You're definitely not alone in this. It's really tough when you're doing your best, but it feels like no one gets it. Just know that your efforts and struggles are valid. It's about finding what works for you, at your own pace, without the pressure of fitting into a standard mold.
I'm glad you connected with what I shared. It's so important to have these conversations and support each other. ❤❤
Exercise intolerance was the symptom that really woke me up to something really being wrong. Before that every doctor just kept telling me I am fine.... so for years I just kept telling myself that its all in my head. But the exercise intolerance was SO debilitating! Then my doctor laughed at me and made a joke about it sounding like an excuse to be lazy. Now I have a new doctor. I miss working out...and that rush of endorphins after a good long run.
I'm really sorry to hear about how your exercise intolerance t was initially dismissed by your doctor. It can be incredibly frustrating and disheartening when the symptoms that affect your life so significantly aren't taken seriously. It's a big step that you decided to switch doctors, and I hope your new doctor provides the understanding and support you need.
Stay strong and keep advocating for yourself. You're not alone in this, and I'm glad you reached out to share your story. Here's to a better understanding and management of your symptoms going forward!
I was always very physically active. Would exercise just for fun. Now I find my own stairs hard work.
This is so painfully accurate! It truly is a daily,vsometimes hourly struggle. Dealing with doctors is the worst. I've just come to the conclusion nobody is going to understand, except those that have it. Thanks for sharing.❤
Thank you for sharing your thoughts. It truly is challenging, and I'm sorry you've felt this way too. Navigating the healthcare system and trying to find understanding and empathy can be disheartening. But, as you mentioned, there's a unique bond among those who experience it firsthand. This community understands deeply, and it's comforting to know we're not alone. While it might be tough for others to fully grasp what we go through, your feelings and experiences are valid. Stay strong, and remember we're here for each other. Sending you warmth and support. ❤️
This video is exactly what i needed to see today, finally received a diagnosis recently and feel like ive been left without anything other then an NHS webpage for support. The unreliable one made me realise this is genuinely one of the biggest struggles ive faced for a lot of time.
Im so happy you found this video helpful. I hope my channel helps you not feel alone and inspire you to have an amazing life in spite of this diagnosis.
I just found out it does get a lot worse. Thirty years plus still have hubby and two kids that are tired of fm and everything else that goes with it. Yesterday was my 69th birthday and I was proud that I was still alive and Ithought doing pretty good. Uh nope my kids have been getting tired of taking care of me as my hubby is otr truck driver and is away a lot. So the day before my birthday I asked the kids to clean bathroom as it is a hated chore and both kids blew up, yelled at me that I never appreciate them, and acted like spoiled teens instead of priveliged 30 plus and yes spoiled adults. I still am in shock with fm kicking into high gear with brain fog, all over deep muscle pain and sharp shooting neck pain due to stress. Hubby arrived in the middle of that and apparently decided ignoring me and my birthday never exsisted so now I am very depressed after crying all nite as I really wanted that day to be special for me as I have always made sure hubby and kids had special ones. Not sure just what to do..... get mad and scream, leave and give myself a special day at spa and nite at bar with hubby, sit everyone down and explain how horrible they have been to me or what??? Any advise?
I'm really sorry to hear about the difficulties you're facing. Living with fibromyalgia is incredibly challenging, especially when it affects our relationships. It's understandable that you feel hurt and disappointed by your family's reaction on your birthday.
In times like these, communication is key. Consider having a calm and honest conversation with your family members. Choose a moment when everyone is relaxed and not in the heat of the moment. Express your feelings and let them know how their actions have impacted you. Sometimes people may not fully understand the extent of your condition and how it affects you, so it's important to provide them with that insight. Open and compassionate communication can help create a better understanding among all of you. Bottling things up only fosters resentment. Remember, you deserve love, appreciation, and support, and it's important to advocate for your own well-being while also fostering understanding within your family. Your children are grown and you have given them all the support and care they needed when younger. It's time they recognize that and show their love and appreciation for you. I am at a stage in my life where my children are basically grown but still live at home. I feel overwhelmed with having to cook every day for them when I don't feel well and it takes so much energy for me. However, they are used to having a home-cooked meal every day. My youngest is 17 and my oldest is 27. At what point I am no longer responsible for cooking for them? This is something I am still navigating. There is no easy answer.
It is natural to desire a special day for yourself, especially on your birthday, but remember that taking care of your well-being should be ongoing. In what ways do you manage stress and prioritize self-care on a regular basis? This could involve exploring relaxation techniques, engaging in activities you enjoy, or seeking support from others who understand what you're going through. I hope this channel gives you a bit of comfort and helps you not feel alone. I wish you all the best in navigating those feelings with your family. ♥️
Are you hypermobile ime from.uk.and we have to find treatment ourselves 27 years CFS pots fybromyalgia fy
Yes, I loved you saying I feel "shitty" most of the time. I have had this fibro crap for over thirty years. Nobody knows what shifty effect it has on your body and family.
I'm glad my words resonated with you. Fibromyalgia indeed makes you feel "shitty" most of the time, and it's challenging for anyone who hasn't experienced it to truly understand the impact it has on our life and our loved ones. Living with this condition for over thirty years is a testament to your strength and resilience. Remember, you're not alone, and there's a community of individuals who understand what you're going through. Sharing your experiences and insights can help raise awareness and provide support to others facing similar challenges.
With lupus + CFS, I can relate especially to being unreliable (especially with a job- not being able to work a regular job and losing income because of it) and not being able to get fit due to exercise intolerance. And of course, not being believed - mostly with CFS, less with lupus after my diagnosis - but I felt like I wasn't believed a lot before I got diagnosed. For me, although I've had widespread pain with CFS, my main issue was always fatigue, but also headaches, brain fog, weakness, and crashing after activity. Pain was never a main complaint for me, as you said. But I do believe they are two sides of the same coin (fibro and CFS).
Nicole, I just realized I never answered your comment. I'm so sorry. Thank you for sharing your experience and relating it to the challenges discussed in the video. It's saddening to hear that your experience with lupus and CFS has presented similar struggles in terms of unreliability and the impact on your ability to work a regular job.
It's disheartening when individuals with chronic illnesses like fibromyalgia, CFS, and lupus face disbelief from others, especially before receiving a formal diagnosis. The lack of understanding and validation can add an extra layer of frustration to an already challenging situation.
While some people think that pain is one of the worst symptoms someone can get, fatigue and brain fog can be as debilitating if not worse. Sharing our experiences is essential in breaking down misconceptions and building empathy within the community.
The struggle is real. I can relate to everything you said. There is also the insomnia and restless legs. The waking up and feeling like you never slept at all. People don't believe us because we look normal they don't have a clue what we're going through. I pray for a miracle for all of us suffering.
Thank you for sharing your experience with us. It's definitely tough when people don't understand us because what we go through in invisible. Insomnia and restless legs are particularly challenging, as they disrupt much-needed rest. It's important for people to understand that just because a condition isn't visibly apparent doesn't mean it's not real and affecting someone deeply. Wishing you strength and comfort. ♥️
@@tt_looking_glassThe bottoms of my feet tingle. I assumed that was coming from a bad back? Is that a symptom of fibromyalgia? Sometimes the tingling goes up my legs.
Also I have spent most of my savings trying to find the right specialists privately. And I am now back at square one. What a waste of time and money. It’s like, no matter what you do, you’re in a dead end. Also, it’s hard because you worry your children won’t understand your illness and worry they think you are lazy and absent.
That is incredibly frustrating and disheartening, having to use up most of your savings searching for the right specialist, only to feel like you're back at square one. It really does feel like hitting a dead end, no matter how hard you try. And I totally get the worry about how your kids see you-it's tough when you think they might not understand your illness and might see you as lazy or not there for them. Keep the conversation open as they grow and I can assure you they will become very empathetic human beings. Hang in there. ♥️
I can resonate with everything you say… the nervous system is on hyper alert which makes it difficult to navigate social situations. The frustration of not being able to fulfil my physiological needs is a real issue… the physical and the mental is not conducive to achieving my personal goals. 😢
I totally get you. I hate how when I'm in a bad flare, I let go of personal care. Which makes me feel awful both physically as well as making me feel unattractive and dirty. And that is just in the moment, then there are the long-term goals and dreams that never happen because of our bodies determination to stop us.
I usually take a bath to wash my hair. I can also soak my legs in the hot water. I always brush my teeth first as I am usually too exhausted to do it after being in the hot water.
Yes, sometimes I do it in the bathtub too but the heat makes my POTS symptoms worse and I feel very exhausted like you mentioned and then I have no energy to dry my hair. I can’t go to bed with my hair wet as I always get a sore throat.
I feel very humbled/honored that you assigned higher priority to your subscribers with very pertinent/relatable Fibro content before washing your oily hair.😬Seriously, your hair looked very nice (but I wonder if it looks as good in 4K resolution 🤔🤣). Forgive my off humor….The highly depressing nature of Fibro we live with daily compels me to “lighten up” any human interactions or nagging/debilitating physical symptoms as often as I can (unless I feel so bad that I can’t even think clearly). Anyway, this was a very good presentation you made!! All points(struggles) were very relatable! My short hair is easy to maintain, but I have a laundry room sink I can stand next to when I want my hair washed without having to get in the shower …………“Pain” creates so many different feelings in our bodies, it is impossible to describe to someone….something as trivial as gas pain/discomfort takes on a whole new meaning for a Fibro sufferer…🤢
🤣🤣🤣I appreciate your humor. In my opinion that is the only way to survive chronic illness. I needed that laugh today.
I WISH I had someone I could rely on but I’m a single mom so even when I feel like I’m gonna pas out from pain I still have to work 😢😭😫
I'm truly sorry to hear about the challenges you're facing as a single mom living with Fibromyalgia. I cannot even immagine how hard that is.Your strength and resilience are nothing short of incredible. Balancing the responsibilities of work and motherhood while dealing with chronic pain is undoubtedly a heavy burden.
It's unfortunate that you don't have someone you can rely on for support during those difficult moments.
Sending you strength and positive vibes during your journey. 💪❤️😢
Same here. My family thinks I’m lazy and giving excuses.
Jesus is really there if you beg Him for help
I can relate to everything you just said I’ve been suffering for years and finally just got a diagnosis last week. I knew someone was wrong but these doctors make you feel like it’s all in your head which makes you get isolated and trigger anxiety and depression. It’s rough living with this and it take a lot of will power to keep on pushing through on a daily and try to stay true to your self and accomplish life goals but let’s be creative in creating a life that can support our condition and push through this ladies. I wish all of you all the best and my prayers are with you all! 😩❤️🙏🏾🙏🏾🙏🏾
I completely understand what you're going through, and I'm so sorry to hear about the struggles you've faced. Getting a diagnosis can be a relief in some ways, but it's also disheartening when you've been made to feel like it's all in your head.
Your determination and willpower are truly admirable. Living with a chronic condition like this is incredibly tough, and you're absolutely right that it's important to be creative in creating a life that supports your well-being. Surrounding yourself with understanding and supportive people can make a world of difference.
Thank you for your kind wishes and prayers for everyone going through similar challenges. We're all in this together, and your positivity and support mean a lot. Sending you strength and well wishes on your journey! 💪❤️🙏
Recently diagnosed, but believe I've had it for some time. THIS was needed today. Called my doctor in TEARS because I've awoken To my hands feeling like the were on fire and completely numb.
I'm so glad that the video resonated with you during this challenging time. Getting diagnosed with fibromyalgia can be both validating and overwhelming, especially when you look back and realize you've been experiencing symptoms for a while. Believe me, I know! The pain and sensations you described, like your hands feeling like they're on fire and numb, are incredibly distressing. Connecting with others who understand what you're going through can provide a sense of comfort and support. Stay strong and continue seeking the right resources to manage your condition. Thank you for sharing your experience, it helps others not feel so alone. ♥️
Google The Fibro Guy and the Curable app, you can recover. I promise.
Yes I can relate to these struggles. My fibromyalgia has disabled my mobility a lot. I can’t express enough to finding the right team of medical professionals to help aid you in managing your symptoms and establishing a supportive family to be helpful.
Thank you for sharing your experience. When illness affects our mobility it creates immense challenges.
You are so right! Connecting with the right people can make all the difference in coping with the unexpected struggles that come with fibromyalgia.
This is a brilliant video I have had fibromyalgia for 20 years and it’s hard u r so talking the truth u know a lot I just wish I could wake up one morning and feel normal and not in all this pain it’s not good thank u so much Jackie u k 🌈😊
Thank you so much. Yes, it does wear you off. I’ve also had it for a long time and it’s exhausting. I can’t even imagine what it would be like to not have pain. It’s been so long, I can’t remember anymore.
A little late to this conversation but this was a great revisit for me of the things I stopped telling people because I was told "its the only thing you talk about" or people belittling your syndrome by saying "I'm tired too; that's just normal".
It's frustrating when others dismiss our experiences with fibromyalgia, mistaking it as something normal like being tired. Many of us with fibromyalgia face similar challenges, this is why it is important to talk about it and raise awareness. Keep sharing your experiences and speaking your truth. We're here to listen and support each other. ❤️
Daniela
@@tt_looking_glass thanks Daniela. ❤️
had a doc tell me 'welcome to the human race, everyones tired'
@@mkf628 Oh yes! I hope you managed to find a health care professional who gets it! 🩷
I’ve been dealing with fibromyalgia going on 25 years now. It’s a very long story but to keep it short, after my father died my mother had my hair cut and made me get a perm twice a year. She hated my long straight hair. So, after she died a few years back I let it grow out. (Covid helped with this decision.) My hair grew to 36”. I loved it. It helped me to feel some freedom from my childhood. I felt like it was who I was meant to be. But, keeping it clean and braided just became too hard. Then, last year I learned that I needed brain surgery. So, I made the decision to cut it to shoulder length. I had to simplify my life. I still miss it but I don’t regret it. I’m almost 60 years old and I’m finally learning to love myself and how to really take care of myself. I need it shorter for now, but that doesn’t mean it will be forever.
Hi Sharon,Thank you for sharing such a personal and profound part of your journey. The story of your hair is incredibly moving-it's so much more than just hair; it represents your freedom and reclaiming your identity. I'm sorry to hear about the challenges that led to cutting it, especially the need for brain surgery, but it sounds like you made a wise decision to simplify your care routine to better manage everything.
It's inspiring to hear that you are learning to love yourself and prioritize self-care as you approach this new chapter in your life. It's never too late to embrace who you are and make choices that support your well-being. Whether your hair is long or short, what truly matters is how you feel on the inside, and it sounds like you're growing stronger in that respect every day.
Thank you again for sharing your story with us. You're a testament to the strength and resilience that we all aspire to, and I wish you continued health and happiness on your journey of self-love and care.
You nailed my top 10! Thank you for your clarity. Unreliable, exercise fatigue and the seemingly limited ability to support myself yet pay $1500 month in out of pocket expenses to manage the illness. Though post covid opportunities are better than ever with remote or hybrid work options. Emotionally heartbreaking loneliness/isolation and challenges in intimate relationships - including not being believed - it's all exhausting.
Marianne, it sounds like you’re carrying quite a heavy load, and I really appreciate you sharing your experiences so openly. Managing illness-related costs while dealing with the physical and emotional aspects of your condition, it’s a lot for anyone to handle.
I’m glad to hear that the post-COVID new landscape of work has provided some good options, at least in terms of logistics. Yet, the emotional side, like loneliness can be just as tough, if not tougher. It’s tough when others might not fully understand or believe what you’re going through. I'm here for you, and so is this community. Whenever you need to express yourself or find a bit of comfort amidst the struggle.
There are so many issues with fibro, it's hard to pick which is the worst! Right now it's the exhaustion, cold sweats, and the pain in my bones. I got a walker, just standing takes energy, So this helps so much! I was embarrassed to try but it's a godsend!
It really sounds like you're going through a tough phase with your fibromyalgia right now. The exhaustion, cold sweats, and deep bone pain you're describing are incredibly challenging symptoms to manage daily. I can imagine it wasn't to get a walker and the mix of emotions and the possible stigma around mobility aids. But it's great to hear how much it's helping you conserve energy and maintain some independence. Mobility aids can be game changers, offering that extra bit of support and safety when you need it most. Many in the fibromyalgia community understand and share their experiences, and finding support among peers can be very validating. Keep reaching out, sharing your journey, and embracing the tools and strategies that help you navigate Fibromyalgia.
I can sympathize and relate with everything that you mentioned here. I am a man in my late sixties who has struggled with ankylosing spondylitis and fibromyalgia for over thirty years. I know what you mean about people thinking that you are some kind of a hypochondriac, I even fired my first rheumatologist eight years ago because he laughed off my fibromyalgia, saying that everyone with an autoimmune disorder automatically thinks that they have fibromyalgia as well. Doctors are human too, with their own opinions and prejudices. My AS was diagnosed by my eye doctor and my fibromyalgia was detected by my podiatrist who used a tuning fork to measure the sensitivity of my nerves to stimuli. I just happened across your channel and I thank you for sharing your experience with your viewers. I don’t have anything else to add, I think you covered the whole topic very well. You are a great communicator and we need more people like you to advocate for our community. I hope you have a partner who is willing to go “all in “ with you and give you all the support you deserve. I’m blessed that my wife is able to listen and understand my pain and fatigue, and she fully supports me when I’m unreliable and have to delay or cancel activities because of my condition. May God love and bless you richly!
Thank you so much for sharing your experiences and for your kind words. It really means a lot to connect with someone who understands what it’s like to live with ankylosing spondylitis and fibromyalgia. Hearing your story about the challenges with doctors and finding the right diagnosis resonates deeply. It’s tough when the people who are supposed to help us don’t fully understand or acknowledge what we’re going through.
I’m sorry you’ve had to go through dismissive attitudes, but I'm glad you’ve found medical professionals who recognized and validated your symptoms. It makes such a difference when our conditions are taken seriously and treated properly.
I can relate to your experience, especially having the support of a loved one through tough times. My partner has been my rock, standing by me through every diagnosis and every rough day. It’s such a blessing to have someone who understands and supports us unconditionally. It sounds like your wife is an amazing support, and I'm so happy you have each other.
Thank you again for joining our community and for your encouraging message. God bless you and your wife with love, health, and happiness! Let’s keep supporting each other and sharing our stories.
@@tt_looking_glass Thank you so very much for reading and sharing your response to my recent comment. I just watched this video again, trying to focus and learn more the second time around. I live across Lake Ontario in Central New York State, and I hope that the recent fickle weather has not been as hard on you as it’s been on me. Thank you again for your kind and encouraging words. I’m glad to hear that you have strong support from your partner, and I pray that you live and flourish in the love and grace of Almighty God. Thanks again for using a lot (I’m sure) of your precious energy and time to share your story on this fine channel!
It's always a pleasure to read your comments and respond. I'm sorry sometimes it takes me a long time to reply. Comments often get lost in my CZcams notifications.
I can totally relate to the challenges posed by the unpredictable weather, it does seem to have a mind of its own sometimes! but I'm glad the weather is getting a bit more stable now. Yay!! Finally!
Thank you for your kind words and prayers. Having support from loved ones truly makes a big difference, and I feel blessed. Your encouragement means a lot, and I’m grateful that you appreciate the effort put into sharing these videos. Thanks again for being a part of our community!
Thank you for recognizing and saying it out loud! I'm so unreliable and feel so guilty and like a bad friend.
I hear you but it's important to remember that your worth as a friend isn't measured by your ability to always be present or meet every expectation. True friendship understands, adapts, and supports through life's ups and downs. It's okay to not always be able to show up in the way you or others might want. What matters most is the love and intention behind your actions. You're navigating your challenges the best you can, and that doesn't make you a bad friend. It makes you human.
It took me 3 years to get disability for fibromyalgia here in Australia. This was only after I developed Dystonia as well. Love and appreciate your videos Daniella and your bun looks adorable.
I’m glad you finally got disability even though it took you three years. I’m on disability too but not for Fibromyalgia. I would not have qualified for fibromyalgia but I have many other chronic illnesses and I qualified for those. The problem is my disability is from a private insurance and it will only cover me fire two years. I’m like… this in interesting. Does that mean I’m going to be cured in two years? What am I supposed to do then? I would never qualify for the government disability.
I can't believe your disability is for 3 years because when I filed for mine the Dr had to state that it won't get better and the magic words they had to use was fully treated. I had to coach my Dr to write that phrase! Mine is for life because it's through the government here in Australia and am very grateful because I'm single and was struggling to make it financially on unemployment benefits .
@@wendygraham7787 my disability is not through the government. It was a privately paid insurance through our association. It’s the deal that was negotiated by the association otherwise it would have been so expensive we wouldn’t have been able to pay. I don’t qualify for the government disability because my husband makes decent money. But they don’t take in consideration we have five children still living at home, some still in university and that we help family financially. And my disability is only for 2.5 years. 6 months was considered short term disability. Then you have to reapply for long term disability and that’s for another two year. And then that’s it. You are out.
I’ve got a million things wrong with me and still haven’t managed to be approved no matter how many doctors and specialists have tried for me. Given up now.
@@cathie-aussiegirl6547 I understand wanting to give up. Please don't give up , that is what they want you to do. . I had to lodge an appeal to get mine.
You're hair looks really good in this video!❤️
This seems like a really informative video, thanks :)
Thank you. ❤️ I don’t often wear my hair up because it gives me a headache.
I agree you look lovely. Recently diagnosed with Fibromyalgia and Rheumatoid Arthritis myself - still processing and trying to get more information.😊
What’s frustrating is that I have PTSD in part due to treatment from employers that I have been working through. Due to decades of living in survival mode, but body is rebelling. I’ve done the work to get rid of some of the emotional pain, but it’s hard to forget this and hard to have a job and quality of life due to the physical pain and fatigue
Hey there! Thanks for sharing your story. I'm really sorry to hear about the challenges you've faced with employers and the impact it has had on your well-being. Dealing with PTSD is not easy, and it''s understandable that the physical pain and fatigue makes it difficult to hold a job and maintain a good quality of life. You are not alone in this journey, I have had my share of trauma with employers. If you ever need someone to talk to or have any questions, feel free to reach out. Take care!
I was a teacher for 20 years. Due to all the symptoms of fibromyalgia, ulcerative colitis and POTS I had to leave. I’m blessed that my husband was supportive about me quitting. He saw how much I was struggling. I understand not being reliable. It’s extremely frustrating! Thanks for sharing! I think your bun is cute! 💗
Thank you. It is so hard to give up a career that you worked so hard to have. There is another CZcamsr @healwithlaurennicole who was also a teacher and had to leave because of Lupus. She has a very inspiring channel with a big focus on healing.
@@tt_looking_glass I will check out her channel. Thank you!
I taught kindergarten and 1st grade. I absolutely loved it until I got sick. I know how lucky I am that my husband was supportive and we were able to get by without my salary. It was still hard though. One of the best things we did was downsize to a smaller home that doesn’t require as much energy to maintain. I’m enjoying your channel. Have a great day. Hoping you don’t have too much pain today.
@@debrairvin9776 I hear you. I used to love my job too but had to quit because of my deteriorating health. I totally over did it today and I can already predict a bad day tomorrow but it was totally worth it and I would do it again.
I was just about to comment on this, Debra, because I can 100% relate! I had to leave my teaching career, only 3 years in, because of Lupus. And then I saw Daniela gave me a shoutout, so thanks Daniela! I'm releasing a new video tomorrow about how leaving fulltime work gave me the space I needed to rest, decrease stress and heal myself. I'm so thankful to have had a supportive husband as well. I'd love to connect with you more, Debra! 🙂 I'm so happy for you that you were able to leave and take care of your health, although I understand the emotional pain of feeling like we were forced to leave a career we loved and enjoyed. Its definitely been a tough road emotionally, but my body thanks me for it every day and I am grateful for that!
@@healwithlaurennicole I’m sorry I am just seeing this message now, Lauren. I know Lupus can be so challenging to treat and live with. I will check out your channel now. Thank you! 🌸
I had beautiful long curly hair that I loved, it gave me confidence and I just felt so good about myself.
Then, I got my first lupus flare. My hair started to fall out, its condition changed, and it looked dull. Also I started to sweat in ridiculous amounts and my hair would make it worse with overheating.
I had to take a pair of scissors to my once beautiful long hair and cut it to the jawline.
Of all the things that I've had to give up due to SLE, fibro, CFS the loss of my hair was a pivotal moment in my journey and I had to accept my old life was over.
13yrs later I try so hard to be productive but it's a daily battle with a very cruel illness.
My only relief is in sleep, but I wish it wasn't so.
Now being awake during the day is incredibly depressing because of the wasted time that I can't take advantage of.
I'm typing this at 12.40am I'm fairly alert but feel so weak yet better than I would at 12.40pm.
These illnesses are the antithesis of a normal life.
Reading your story truly resonated with me. It's incredibly hard when something so integral to your identity, like your beautiful curly hair, is taken away because of an illness. These conditions can indeed be relentless and change our lives in ways we could have never anticipated.
The fact that you find some relief in sleep, yet struggle with the reversed day-night cycle, is challenging. Thank you for sharing your story, your experiences can provide understanding and comfort for others facing similar battles. Stay strong and keep pushing forward. Every day is a new chance, whether it's at 12:40am or 12:40pm.
Hello 🤗 Thank you so much for sharing this, I needed this today more than ever!
I am a 48 yr old woman that has been going through this for the past 20 yrs and it has taken a hard turn in December. I am currently fighting to see a specialist and its not easy in QC, I am feeling lost and feel like I am not taken seriously.
Thank you for making me feel better and that I'm not loosing my mind!
Take care 🤗
Hi! 🤗 I'm truly touched that my words could provide some comfort to you today. It's clear you've been facing quite a journey with Fibromyalgia, and I know how challenging it is.
I'm sorry to hear about the difficulties you're experiencing in getting the specialist care you need. Sometimes, advocating for your health can be tough, but your persistence will lead you in the right direction.
Stay strong, and don't doubt yourself. You're not losing your mind, and your determination is admirable. If you ever need someone to talk to or have questions, feel free to reach out. Take good care of yourself, and may brighter days be ahead! 🤗💕
@tt_looking_glass thank you for your kind words truly appreciated 🙏 ❤️
It feels like you're describing MY life. I still can't even get diagnosed. I'm a disabled Veteran and my doctors spend more time gaslighting me than helping me. I'm in tears watching your video. Everything you said rings so accurate & true that it's eerie. Thank you for sharing your story, you're inspiring. Be well. ❤
I’m so sorry to hear that you’re going through this, especially without a proper diagnosis. It’s incredibly frustrating and disheartening when doctors don’t take you seriously . Being a disabled veteran on top of that. Thank you for your service, and you deserve so much better care and respect.
It’s heart-wrenching to hear that my story resonates so closely with you, but I hope it helps to know you’re not alone in this. We’re all in this together, and sharing our experiences can bring a bit of comfort and solidarity.
Thank you for your kind words. Your strength and courage are inspiring, too. Sending you a big virtual hug and all the positive vibes I can muster. Be well and take care of yourself. ❤️
I am 67 and have fibromyalgia and chronic depression, also R/A. Thank you for this video!! Everything you said was on point. 💙
Thank you so much for your kind words. It means a lot to hear that the video resonated with you. 💙 Living with fibromyalgia, chronic depression, and RA is tough, so I’m glad you found the content helpful.
I posted a comment but don't see so in case it doesn't up I'll just that everything you said resonated with me and is spot on relatable.This is the best vid I've seen on the struggles of living with fibro. And you look beautiful with your hair in a messy bun.Sorry if the other longer comment shows up.
Strange. I don’t see the other comment but you know what? This has happens to be when I have left messages with other creators, so I think there is something up with CZcams. It’s always good to check.
Thank you so much for the comment, I really appreciate. This video was not even planned it was a last minute ideas I had when in bed and could fall asleep. I just grabbed my phone and wrote some pointers and filmed the next morning. I’m glad people liked it. ❤️
Ugh the disability dilemma. You have to document everything else. All depression symptoms, anxiety, arthritis, IBS, breathing problems, sleep issues, everything! Keep on documenting. For me short hair is harder cuz it has to be styled and kept up with no money.
I hear you, and the disability application process can be incredibly challenging. It's often a meticulous and time-consuming endeavor, requiring documentation of all the symptoms. The constant documentation is overwhelming.
On top of that, the financial stress can make things even more challenging. Short hair can be trickier to manage, as it often requires more frequent styling. With long hair, you have the flexibility to braid it or put it in a bun and be done with it.
Once I had bangs and OMgoodness! that was horrrible as I had to deal with it every morning. I also got greasy bery quickly and looked bad if I didn't wash my hair everyday.
Thank you for sharing your experiences, and I hope you find the support and solutions you need to make things a bit easier.
I’ve been trying for disability for 3 yrs now for my fibromyalgia + CFS. Plus now with my paraesthesia My life is so unpredictable and I hate having this disease, that I believe that my doctors are so over me talking about. But I’m not complaining I’m communicating but no one listens anymore. This disease has had a tremendous effect on my marriage, mental health and I’m ready to give up 😢
I'm really sorry to hear about your struggles with fibromyalgia, chronic fatigue syndrome and paraesthesia. It's tough when it feels like your doctors don't understand or listen to you. Try seeking support from patient advocacy groups or online communities to connect with others who share similar experiences. Don't give up-reach out to your support network and let them know how you're feeling. You're not alone, and there are people who care and want to help you. Take care of yourself, and stay strong. ♥️💪
I am so sorry to hear your struggle. I am bedridden most of the time, and I know what it feels like to want to give up. Your life and mine still have a purpose, and I believe one day we will help another in the place we were. I pray Jesus will give you comfort, and I hope you are doing better. Sending hugs that don't hurt. :)
@@nancyl.martinez7156well, I sure trust Christ knows where we are, and can use us. As a bed ridden by this and other issues... the Lord has given us time to learn, and brings us the souls we are to share with... He conquers ALL and we serve Him... not this flesh💪💪🤐🙏😇💫
Today, I had a sharp jabbing pressure on the arch of my foot. It was like the arch had barbed wire in it. I screamed for about a minute until I could scratch, then, it calmed down. This doesn't happen often, but it has happened to me occasionally since I was a kid.
I hear you. Sometime I have those “out of nowhere” crazy stabs. I’m like “who has a voodoo doll of me? 🤣
That has occurred to me as well! My pup used to look at me strangely when I’d let out a whimper or yowl out suddenly 🤬. Now she’s more used to these random yelps as I hobble around. Voodoo or Karma or wtf ??? I sometimes ponder what I might have done to deserve these moments of agony. It is somehow reassuring to read so many similar stories. Invisible misery doesn’t always love company- but I guess if fellow birds can share tales of these kind of painful feathers… we can at least intermittently flock together in this way, inbetween the flares and restless sleep cycles!🚨🙏🏼❤️🩹⚕️🪬 Thanks D for creating this safe space. It definitely resonates!🇨🇦
Oof its nice to hear you and others talking about it in the comments, nice to know im not going crazy and making up my symptoms and thats others suffer with this too
I'm sorry to hear about the challenges you're facing with your pain, and managing your symptoms. It can be incredibly frustrating when doctors dismiss symptoms as growing pains, especially when they persist and affect your daily life.
Experiencing increased pain and fatigue after exercise or prolonged standing is a common symptom in conditions like fibromyalgia, chronic fatigue syndrome and POTS. It's important to listen to your body and find a balance between staying active and not overexerting yourself. Gentle exercises, such as stretching or low-impact activities, might be more manageable and help maintain your physical well-being without exacerbating your symptoms.
Having additional health conditions like IBS can further complicate things and add to the overall challenges you're facing but they commonly go together with fibromyalgia.
Regarding your suspicion that your symptoms worsened after being diagnosed with celiac disease, it's possible that the management of celiac disease, such as dietary adjustments, can impact your overall well-being and potentially affect fibromyalgia symptoms. It's worth discussing this with your healthcare provider to explore any potential connections or strategies for managing both conditions simultaneously.
Keep advocating for yourself and seeking the help you need. Remember, you're doing your best despite the challenges you face.♥️💪
I’m 22 and only just got diagnosed. My doctor told me that it’s not likely to get better going forward, and it’s so hard to come to terms with. I’m in pain, I’m exhausted, I can’t even go to the grocery store for fifteen minutes without needing to lay down and recover. So few people my age understand when I tell them I’m simply hurting. I’ve cancelled dozens of classes or adventures, slowed down friends, changed plans just because it’s so taxing. And she’s telling me that it’s more likely to get worse than better?
I’m trying a medication that’s supposed to help, but the side effects are so rough on me. I’ve had cold-like symptoms every other week and I’m being told to just wait it out. This has been hard for me to come to terms with.
I'm really sorry to hear you're going through this. Getting diagnosed at 22 is tough, to say the least. It is very frustrating and exhausting to not even be able to do simple tasks. It's very isolating when people around you just can't grasp what you're experiencing.
Hearing from your doctor that things might get worse rather than better is a lot to process, and it's totally understandable if you're finding it hard to come to terms with. It's okay to feel upset or angry about it. It's a big deal, and you're allowed to have all the feelings you're having.
On top of that you are dealing with side effects. It's one thing to try and manage the condition itself, but when the treatment makes you feel unwell in other ways, that's another layer of difficulty. It's important to give yourself credit for the strength it takes to keep searching for something that helps,.
Even though it's hard, you're doing everything you can right now. It's okay to take things one step at a time and to give yourself permission to rest when you need to.
I know the future is uncertain but you are not alone. There are communities and support groups out there full of people who get what you're going through. Sometimes, sharing your story and hearing others can make a big difference in feeling understood and finding new ways to cope.
Keep hanging in there, and take things day by day. ♥️
the hair struggle is SO REAL! I was diagnosed with fibro about 8 years ago, (I'm 25), my hair was reaally long, my mom helped me to dry it, even my bf helped out sometimes. Then I took the courage and cut it shoulder lenght, and honestly it was the best thing I've done. Sometimes I still need some assistance, but mostly manage to do it by myself. Also, a tip if anyone's interested, blowdrying brushes are my best friends 🤣
The hair struggle is definitely real! It's great to hear that you found a solution that works for you by cutting your hair shorter. It's all about making those adjustments that make daily life a bit easier, right?
Big thanks for sharing your tip about the blowdrying brushes! It's always awesome to hear about the little things that can make a big difference. I'm sure others in our community will appreciate this advice too. 😄
Girl!!! I am watching this in tears. It’s like you are recounting my own story and fears and struggles!!!! I hate that you have to go through that but it’s nice to know I’m not alone
Hey Michelle, I’m really touched that my video resonated so deeply with you, but I'm also sorry to hear that you’re going through such similar struggles and fears. It’s tough, isn’t it? Knowing that someone else understands exactly what it feels like does bring a bit of comfort, though. You’re absolutely not alone in this.
Sharing our stories and hearing others say “me too” can be incredibly powerful and healing. It helps us feel connected and supported, even on the hardest days. Please know I’m here with you, and this community is here for you, every step of the way. Let’s keep sharing, supporting each other, and finding strength in our shared experiences. You've got a friend in me, Michelle. Hang in there, and let's face these challenges together. 💖
Wow! Thank you! That means so much to me. And your timing is perfect as I sit and contemplate how in the world I’m going to get from one side of today to the other. I know I will. However, it sucks that I have to plan how to walk to the other side of the room. That I can’t hold my four legged child on my lap because his little paws feel like knives. Knowing I will have to play “how many people can I disappoint today”. I don’t like that game. But knowing there are people out there who can come into my life, into my house, into my mind allows me to come at this day differently. It helps me be thankful that I have a beautiful and safe space to walk around in. It gives me the space to think of other ways to be with my fur baby that will be better for the both of us in the long run. Being thankful to have people in my physical circle that are close enough to me to worry that I have disappointed them. Does any of that even make sense? Your replay and encouragement means a lot. Thank you!!
Michelle, your words absolutely make sense, and you articulate the daily challenges so well. It's a feeling many can relate to when dealing with chronic conditions that limit daily activities. The fear of letting others down is overwhelming. It’s so tough to navigate the physical limitations and the emotional toll they take, not just on you but on your interactions with family and even pets.
I’m truly moved by your ability to find gratitude amidst these tough moments.
Thank you for sharing so openly. It helps all of us feel less alone. You’ve got a whole community here that understands and supports you. 😍
Yes girl, I deal with all that and now I’m having symptoms of Raynaud’s phenomenon. I appreciate ur video so much. It’s nice knowing that I’m not the only one that deals with these symptoms. Thank you and God bless
Thank you so much for letting me know the video is helpful. It helps motivate me to keep making them. Raynaud’s is awful and on top of all that…. Man!!!
Can you have the ymptoms of Raynaus without actually having it?? My fingers throbtrribly but Don have the white fingers.
Thanks for sharing your video. The exercise intolerance is a real issue for me. Age does seem to matter for me, too. I’m over 50.
I have suffered undiagnosed for decades. Most days I feel nearly disabled from it but I’m finding my hope and help in Jesus. I may not be able to cry out to everyone around me but I can always cry out to the Lord since he’s always there.
Thanks for watching and for sharing your experience. Exercise intolerance is such a tough issue, and it definitely gets harder as we get older. I’m sorry to hear that you’ve suffered undiagnosed for so long, it’s heartbreaking when you feel nearly disabled from it all.
Finding hope and help in Jesus is a beautiful thing. It’s comforting to have that unwavering support and someone you can always turn to. Sometimes, faith and spirituality can provide strength when everything else feels overwhelming.
Keep holding onto that hope, and take things one day at a time. We’re all in this together, and your faith and resilience are truly inspiring. Sending you lots of love and prayers.
Everything is a struggle ..even getting diagnosed..told for years the symptoms where all in my head. The pain is horrendus..the brain fog is terrible but the FATIGUE is a horror story.
I am turning 42 at the end of this year, married, five teenagers, and a career I adore. I too never exercised because of intense pain, fatigue, and flare up in Fibromyalgia, chronic fatigue, and other chronic illnesses I’ve been dealing with for more than 20 years. I purchased a MaxiClimber for $200 in a bid to become stronger and to build my stamina. Against all odds, I’ve stuck with it for nearly 8 months now. I have worked up to 400 reps every other day. I started with 25 reps. I minimize flare ups by skipping a day in between. Physically, I feel the same amount of pain and fatigue I would feel otherwise, no better, no worse, but I look great, and that makes me at least feel better in that aspect ❤ I HATE working out, btw!
Also, my husband and I practice intermittent fasting, which for us means we space out our meals. We eat whatever, just actual portion sizes 😂 I’ve lost 50 pounds in the past year and a half in another bid to lessen my pain and fatigue. It didn’t, unfortunately. My husband went from having diabetes to not having diabetes by fasting in this way.
Happy early 42nd birthday! It's amazing that you're balancing a career and five teenagers, all while dealing with chronic illnesses. Great job on sticking with the MaxiClimber and working up from 25 to 400 reps! It's good to hear that, even though the pain and fatigue are the same, you feel better about how you look.
Losing 50 pounds and managing your health with intermittent fasting is impressive, too. Sorry to hear it didn't lessen your pain, but it's great that it helped your husband with his diabetes. You're really doing an incredible job looking after your health. ♥️
Sorry for my English,I'll try without spelling problem,
Please explain about the eating you mentioned,the fast
And about the exercise,I'm dealing with fibromyalgia for over 15 years,I'm trying my best as well as at the emotional aspect ( sorry English is not not my language) I spent so much money but I feel like nothing happened
I have Fibro & ME & it was so good to hear u talk about how it affects ur life. Its definitely a struggle, as no one can see ur pain, or know the crippling fatigue that prevents u doing the things u love in life.
I hope for everyone with this condition, that a cure will b found soon 🙏
I'm glad to hear that my video resonated with you and that you found it relatable. Living with Fibro and ME is challenging, especially because these conditions often go unnoticed by others due to their invisible nature.
Your hope for a cure is shared by many, and medical research continues to make advancements in understanding and treating these conditions. Let's keep hoping for breakthroughs that will make life easier for everyone dealing with Fibro and ME. 🙏
Thank you for sharing your thoughts and being a part of this community. Your support means a lot!
I've had me before fybromyalgia but fybromyalgia is a symptom of me listed muscle pain so to myself they are same thing and a part if Asperger's add albeit took me 43 get diagnosed
So sad it took so long for your diagnosis. It was 30+ years for my diagnosis. So frustrating & life wasting. Hope a cure is found soon @@Truerealism747
you hit most all on the head! I'm sorry to hear anyone going through the same things as me but it's also good to hear it. Thank you! Be in a soft safe space and rest!❤
Thanks for reaching out and connecting over our shared experiences. It's bittersweet, isn't it? Knowing others are going through similar struggles is tough, but there's also a comfort in not being alone in this. Your reminder to be in a soft, safe space and rest is right on point. We all need that gentle nudge to take care of ourselves amidst the chaos.
I appreciate your support and am glad the video resonated with you. Let's keep supporting each other and spreading that understanding. Take good care of yourself! ❤️
I hate this condition so badly! Living with this for the last 15 years, i have depression because there's a ton of stuff i would love to do and no longer can. The slightest touch, or even thoughts of it hurts extremely badly.
I would love to go to an event or hangout with friends and then suddenly i can't because i hurt so badly. The forgetfulness, the fatigue, anxiety for fear of doing something that may cause intense pains if i do them, to not getting enough rest or cant sleep at all, then breaking down crying because the pain is bad that the only thing i can do is sit in a hottub for an extremely long time in hopes to calm the episode down, sometimes it helps, other times it doesnt . Sometimes the pain hurts worse in one area of the body and the other areas not so bad. Hate, hate when the weather changes ever so slightly because then it throws me into a Fibromyalgia crisis for the first few days. Especially when the weather gets colder or it rains.
Fibromyalgia is diagnosed with trigger points, CFS doesn't have trigger points.
I completely empathize with you. Fibromyalgia is a relentless condition that affects not only the body but also the mind. The limitations it imposes can be incredibly disheartening, leading to depression and anxiety. I've been there too.
A subscriber pointed out to me in a comment that trigger points are no longer needed for diagnosis. This change recognizes the complex nature of the condition, which involves widespread pain and other symptoms. I hope this broader understanding leads to improved support and treatments for individuals like us.
Wishing you strength and resilience as you continue to navigate this journey. 🌼💪
@@tt_looking_glass thank you!! We all need this in our Fibromyalgia journey
THANK YOU for mentioning hair and showering! I have curly hair that took decades to grow about tailbone-length (I'm 6'1" so that's a longer distance from my scalp than for many), and I love it long... but the last few years especially I've had SO much fatigue that I frequently look so greasy, and I hate it.
PLUS I'd also love to exercise or take self-defense, but that requires more physical discipline than fibro will allow for.
You're very welcome! It's essential to address all aspects of living with fibromyalgia, including the challenges that might not be as commonly discussed. Your hair must be absolutely gorgeous, it's completely understandable that you'd want to keep it that way.
@FullMoonHowl and @tt_looking_glass -- I felt same about my hair for years. However, earlier this year I got it cut short of necessity (no energy to spare). I am delighted. It is such a relief. Washing is so much easier I do not dread it. Air drying happens much quicker. (It would be fast with blow dryer but I don't use one.) A good hairstylist makes a great difference. She is so gifted she seems to "get" my hair waves, curls, twists and "cow licks". Now I've had my third cut she just seems to get it better and better. What a relief!! Please consider to not rule it out adamantly. Saving strength is, for me, a good tradeoff. Plus people said it took years off my apparent age.
You are a beautiful young woman. I have great compassion for you and understanding. I am 79 and was diagnosed in 1993. It has gradually worsened year after year. When I was diagnosed people/doctors were reluctant to believe it was a real medical condition. Since that time the list of symptoms has grown longer and longer but the treatment has not been found. I hope they find help for all sufferers of this horrid baffling debilitating disease . Will be thinking good thoughts for you. PS…I think stress was the main reason ..cause of my developing this syndrome.
Thanks so much for your kind words and compassion. It's really touching to hear from someone who's been living with this for so long. I can't imagine how tough it must have been back in 1993, especially when there was so much skepticism about it. It's frustrating to hear that even though we know more about the symptoms now, there's still no solid treatment. I totally agree with you, hoping they find some real help for everyone dealing with this awful disease. And yeah, stress seems to be a big trigger for a lot of people. I'll definitely keep your advice and experience in mind. Thanks for thinking of me, and sending good thoughts right back at you!
Ladies and Gents I found an amazing product for those "body aint doing shirt today" days ;o) lol its called dry shampoo and I have one at all times. Hated using it in the begining but trust me it works so well and really makes your hair look just washed plus saves that energy we just dont have. Hope it helps some of you out its honestly a godsend. much love and gentle hugs to you all. x 🙏🌹
Hey there! Thanks for sharing this awesome find with everyone. Dry shampoo really can be a lifesaver, especially on days when washing our hair is simply not happening! The struggle of dealing with Fibromyalgia is real, and finding little hacks like this can really make a difference. Sending you much love and gentle hugs as well. Keep on sharing those helpful tips! 🌹💕
Well presented. I am so glad that you touched on the fact that one doesn’t look sick, and as a result, one’s challenges are not taken seriously. I don’t discuss my conditions with people I don’t know well, but a number of times have been in situations where the conversation turns to “welfare” or people with “supposed” disabilities like fibromyalgia. The idea that because one does not look sick, one can’t be sick and is therefore “milking the system”, is all around us. I still struggle with feeling guilty and wondering if I’m fooling myself, and am taking advantage because I do miss some events that I don’t want to go to. I’m always questioning my “actual” motivations. I disliked my job so much, and had been granted FMLA (unpaid of course!), but never used it, because I knew I would be judged by my co-workers due to there already being another co-worker who was talked about behind her back, whenever she took a day off with FMLA.
Thank you for sharing your thoughts and experiences. It's tough when people assume that because you don't look sick, your challenges aren't real. This misconception is very hurtful.
Taking time off when needed is a legitimate way to manage your health, and you shouldn't feel guilty about it.
I'm sorry to hear about the challenging work environment. Your experiences highlight the need for greater understanding and empathy regarding invisible illnesses. My work environment wasn't very understanding either and as a result, I ended up having to leave.
@@tt_looking_glass I got lucky. The last two years making me eligible to retire, I had a very understanding boss. We worked 7 by 24. He would allow me to take breaks and go rest in the lounge if I needed. I also was working with a crew of understanding people the last year. The one guy who was ultra conservative and of “welfare queen” mentality, who I expected an issue with, had a sister-in-law who was mostly bedridden with fibromyalgia. He said how much he knew it took to come in everyday, and appreciated how hard I worked . He became the first one to help me out when there were physical demands with the job. I came to appreciate him overtime; not his views, mind. But his empathy
Yes, no one seems to understand that only 3% of welfare recipients cheat the system, while 50% of us cheat on our taxes.
Nice reminder. 👏
I do not wish this on anyone. I do appreciate the time you and your followers put in to help all navigate this never ending pain.
I completely understand this feeling, and I share your hope for a world without such pain and suffering. Chronic conditions like fibromyalgia are incredibly challenging, and it's heartening to see communities come together to support one another.
I'm truly grateful for your kind words. ❤️
You totally nailed it!!! ❤
Thank you, and thank you for watching my video. Don't forget to check my other videos. ♥️ I appreciate the support.
That list is spot on! It's so weird to hear someone know my exact thoughts . I know that list so well. Thanks for confirming that. Crazy me often think it's just my head creating these things. I feel like I can't trust what I think sometimes. It's so confusing. I'm beginning to understan it all more though. The doctors kept dismissing what I would try telling them for years. It finally got bad enough I knew it had to be fibro. A neurologist finally listened just yesterday and confirmed what I knew all along. So much time has passed with me trying for SSDI that I am no longer eligible. At most I can get just SSI which is an insult to try to live on. I would say the loneliness of it all is number 1 the worst.
I'm so glad to hear that the video resonated with you. It’s really validating to know it's not "just in your head," especially after such a long struggle for a correct diagnosis. I’m sorry to hear about the challenges you’ve faced with doctors and the frustrating situation with SSDI. The loneliness and isolation that often accompany chronic illness is incredibly tough. Please know you’re not alone in feeling this way. This community is here for you, to share in your struggles and support each other. Keep advocating for yourself and reaching out. You deserve to be heard and supported.
Please keep communicating! And thanks very much for doing so!
Absolutely, I will definitely keep the communication lines open! Sharing experiences, insights, and just being there for each other makes a huge difference. Thank you so much for your encouragement and for being part of this journey with me. Your support motivates me to keep creating content, sharing my story, and hopefully making a positive impact. Stay tuned for more updates, discussions, and shared moments. Let’s keep this conversation going-it’s so important to feel connected and supported. Thanks again for being here with me. 💖
This video is absolutely fantastic.You are describing me. It is all so true and it makes me feel less lonely. I hate it that other people just don’t understand and not being believed is absolutely the worst! Being totally crippled and then questioned and told it is stress or hormones. You have highlighted all the terrible problems in society if you have an invisible illness. People shun you if you talk about it - they think you’re trying to get away with not working 😢
I'm so glad to hear that the video resonated with you and made you feel less alone. It's incredibly tough dealing with an invisible illness, especially when faced with disbelief and misunderstanding from others. The frustration of not being taken seriously, being questioned, or having your symptoms attributed to stress or hormones is a common and painful experience many of us share. Highlighting these issues is crucial because it sheds light on the societal challenges and misconceptions surrounding invisible illnesses.
Thank you for sharing your feelings and for your support of the video. It's messages like yours that show the importance of these conversations. Let's keep supporting each other and spreading awareness. 💖
I related to and understood every single point you said in this video. You made me feel so seen. I couldn't have articulated any better. Thank you
I'm really glad to hear that you connected with the video on such a personal level. It's great when you come across content that just hits home, isn't it? It's like finding someone who speaks your language and knows exactly what you're going through.
Feeling seen and understood is a powerful thing, especially when dealing with Fibromyalgia. It's like a little ray of sunshine on a cloudy day.
Thank you for sharing your appreciation.You've got this! 😊🌟
Thank you so much for sharing this! I can relate to every single issue you explained. So good to know I’m not alone.
You're absolutely welcome! I'm really glad to hear that you found the video relatable and comforting. It's incredibly important to know that you're not alone in facing the challenges of living with fibromyalgia. Connecting with others who understand what you're going through can provide a strong sense of support and validation. Wishing you strength and resilience on your journey! 💪♥️
Thank you for sharing ! ❤️ ....I feel the need to communicate with others like you who can truly understand and relate to the struggles of living with Fibromyalgia. 😊 I t's so true that unless one has this they can not understand. It is very difficult for me to socialize, it takes alot of energy to be around people, so camping in our 5th wheel in Nature or at the Ocean is my medicine. 🏕️
I was diagnosed in the 90's . (Thankfully I visited a dr that happened to have fibromyalgia herself) so she new right away after testing me that i had FM. Unfortunately she had to quit her practice due to her Fibromyalgia. 😔
Looking forward to more of your vlogs ...i subscribed ❤
I am reading these comments and as someone who is just now making the connections in my own health issues. I feel so much less alone after reading the struggles people are sharing that i can relate to.
Also, this is the first time coming across your channel. And i just wanted to say i was thinking about how pretty your hairstyle looks and i couldn't even tell it was the "dirty hairstyle" 😂😂
Thank you for sharing your story, i have subscribed 😊
I'm really glad to hear that reading these comments has made you feel less alone in your own journey. It is so comforting to know that others have faced similar struggles and challenges.
Thank you so much for your kind words about my hairstyle, and I'm glad you found my channel! 😄 I appreciate you subscribing and hope that you find the content helpful and supportive as you navigate your own health issues.
Remember, you're not alone in this, and there's a community here to support you. Thank you for being a part of it! 🌟😊
OMG, I have the exact same struggles.. thank you for this video. You get this !
Glad it was helpful! You got this!
Just subscribed, you defined my problems with fibromyalgia... and the problems after my brain aneurysm ruptures...
Thank you so much for subscribing, and I'm glad to hear that my video resonated with you.. Living with such health challenges is incredibly tough. But so are you. 💪♥️
Wow! You said it so perfectly. I cried because you really spoke to me about how fibromyalgia has affected me. You make so much sense. I have both Fibromyalgia and ME/CFS. Thank you for being so open. Xxxx
I'm deeply moved by your comment, and I'm glad to hear that my words resonated with you. Living with Fibromyalgia and ME/CFS is incredibly challenging and support is Indispensable.
Remember, you're not alone in this journey, and sharing our experiences and emotions can be a powerful way to connect with others who understand. Feel free to reach out anytime. You're strong and courageous, and I appreciate your kind words. Sending you lots of support and warm wishes! 🌟💕
Your hair looks fabulous! My biggest struggle is getting fit, as I pay dearly afterwards! Thank you for your wonderful videos ❤
Thank you so much for the compliment on my hair! 😊 I appreciate your kind words about my videos.
I understand how challenging it is to stay fit when living with fibromyalgia. It also gets harder as you get older. But remember small steps and consistency can make a big difference.
Wishing you all the best on your journey to balance and wellness! ❤️
I needed to hear this so much today. I feel seen and you were able to put things into words that I have been struggling to explain to my spouse and family. Thank you for this!❤
I'm genuinely touched to know that my words resonated with you and brought you some comfort. It's not always easy to articulate our innermost feelings and thoughts, especially when we're grappling with complex emotions or situations.
Remember, it's okay to have moments where we can't find the right words or feel overwhelmed by what we're going through. Sometimes, sharing a video can bridge that gap and help our loved ones understand our perspective better.
Thank you for your heartfelt comment. ❤️
OMG the hair is spot on, I had very long hair (and depression) so I cut it all off myself. The water of a shower feels like a thousand needles hitting my skin. Now I'm more depressed because I cut my hair and I still can't wash it. You're spot on.
I totally get it! Hair and showering can be real challenges when dealing with chronic illness and depression. Don't be too hard on yourself about cutting your hair; it'll grow back. The important thing is taking care of yourself. You're not alone, and there are ways to make things more comfortable. Take care! 💙
I'm in-between jobs because of my Fibromyalgia. Looking for jobs is stupid hard, and trying to find one that I can find a living wage off of. I am single and I don't live with anyone, so money only comes when I have the energy to Door Dash (2 hours away because the town I live in isn't as busy as the others.) But anything super stressful causes my flare ups, as well as over exerting myself really easy. I'm trying to do my best, but I fear about losing my apartment.
My biggest problem is that I thought all the pain I was feeling was how everyone else felt. in your thirties you start taking that Aleve in the morning, but I've been doing that since I was in my early twenties. I didn't know foot pain for someone doesn't include stabbing pain that makes it hard to even stand on them isn't what your feet hurting is supposed to feel like.
And now I don't know what to do.
I'm really sorry to hear about the challenges you're facing due to Fibromyalgia, especially in your job search and financial situation. It's incredibly tough when chronic pain and fatigue make it difficult to find and maintain employment, especially one that allows you to meet your financial needs
Many people with Fibromyalgia can relate to your experience of initially not realizing that the pain and symptoms they were feeling were not what everyone else goes through. It can be a long and frustrating journey to get a proper diagnosis and understand the unique challenges of living with this condition.
Losing your apartment is a valid fear, and it's essential to explore any available resources or support systems that can help you through this difficult time. There may be organizations or assistance programs in your area that can provide financial aid or housing support for individuals dealing with chronic illnesses. Don't hesitate to reach out to social services or support groups for guidance.
In the meantime, continue to do your best to manage your condition, seek medical advice, and consider discussing your limitations with potential employers when you apply for jobs. Some employers may be more understanding and accommodating than others, and it's worth exploring opportunities that align with your health needs as much as possible.
Remember that you're not alone in your struggles, and there are communities and resources available to provide support and guidance as you navigate these challenges.
Thank you………you described me and my feelings….Have a best days in your life dear.
You're very welcome! I'm glad my words resonated with you. Wishing you all the best days ahead. 😊💫
Hi, I too have Fibromyalgia & thank you for your time talking
about the struggles of
living with it. My fibro started over 30 yrs ago.
It took over five yrs &
six doctors to get an
official diagnosis. I wanted information
on how to treat it so I called the CDC, they
didn't know much about
it at that time but I started
researching it. I was working then but about
Eight years later my doctor said I had to
go to half days which
I did but not long after
I had to quit working
altogether. I wanted
to let you know that I
did file for disability &
was approved after
over two years of being
denied & mountains of
paperwork. I was so blessed. It took a lot
of time & patience but
don't give up. I am now
73 yrs young & have two great doctors treating
me. I have improved &
never stop learning
more & more. Ok you take care & never stop eating
a healthy diet, rest well exercise, take vitamins
& stay away from stress as much as possible.
to quit my job
Hi there! It sounds like you've been on quite a journey with your diagnosis and finding the right treatment. Kudos to your perseverance and determination in researching and seeking information. It's unfortunate that you had to eventually quit working due to the condition, but it's great to hear that you were able to file for disability and eventually got approved after a long and arduous process. Your experience and advice are truly valuable, and it's inspiring to know that you have supportive doctors and that you've seen improvements over time. Thank you for sharing your story, and I wish you all the best on your continued journey towards well-being. Take care! ♥️
Brilliant video 👍
Thank you so much. I’m glad you enjoyed it.
I was admiring your hair, and when you turned your head to show more of the "dirty" bun, I thought it had a lovely sheen. I didn't expect you to say that you hadn't washed it. It looks great. I hope that gives you a lift and doesn't make you doubt your self-judgment. Usually we judge ourselves much more harshly than others judge us.
I also have FM and live in Canada. I just happened today upon the UTube lecture of Dr. Meredith Warner, an orthopedic surgeon in Louisiana, about FM. I found it very interesting. It's good to look into the medical thinking on your chronic illnesses from time to time, to see what they've discovered. Last time I really read a lot about it was around 2018.
Your kind words about my hair are really appreciated! It's funny how sometimes we're our own toughest critics, and a little compliment can make such a difference.
It's great to hear that you're actively seeking information about FM, especially from professionals. Keeping updated with medical insights and discoveries is so important for managing chronic illnesses. It's really proactive of you to stay informed and take charge of your health that way!
I do not comment to anything but i must to you....thank you thank you for speaking so openly i cried after watching as it validated everything i am going through ❤
Thank you so much for your heartfelt comment. It means the world to me to hear that sharing my story has touched you so deeply. I'm so glad it resonated with you and validated your experiences , that's exactly why I do this. You're not alone in this journey, and every bit of understanding and connection helps us get through it together. Sending you so much love and strength. ❤️
I needed this video. I can identify with everything you said. I'm going to share this with my friends to help create awareness. I try to articulate these symptoms, but I get overwhelmed with the amount of symptoms and the pain never, ever stops. Thank you. It is great to hear someone say what needs to be said.
I'm really glad to hear that the video resonated with you and provided some comfort. Sharing our experiences and spreading awareness about fibromyalgia is crucial, as it helps others understand the challenges we face. It's indeed overwhelming, and finding the right words can be difficult.
Remember, you're not alone in this journey. Many people, just like you and me, are navigating the complexities of these conditions. Thanks for watching. Take care! 😊
Thank you so much for your support. ♥️
So happy to have found you!, i have subscribed immediately. I resonated with every one of those 10 unexpected struggles. I always struggle with the why. Why am I man down today, couldn’t have been the one load of washing I did, or the very small grocery shop. It is so frustrating for me not to have a reason and it is because I am a nurse. I need to have a medical explanation WHY I feel like I have 10 tonnes of metal sitting on me. The most frustrating thing for me is I find it extremely hard accepting help when it was always me giving the help. I am more and more bedridden now and I am only 56. I have chronic heart failure, peripheral neuropathy and now been diagnosed with adrenal gland insufficiency which is very scary for me because I live alone. Another specialist to add to the growing list. Thank you so much for speaking out about fibromyalgia, we need to be heard. Going back to your other videos now!😊
Hi Amanda, I'm truly honored that you've found the content resonated with you and took the time to subscribe. Your message strikes such a powerful chord, especially coming from someone with a background in nursing. It's understandably difficult to transition from the role of a caregiver to someone who needs care, and the frustration of not having clear answers to "why" you feel the way you do is deeply challenging.
Thank you for your appreciation of the videos discussing fibromyalgia. It's voices like yours that deepen the understanding and awareness of what many endure silently. I'm glad that sharing these experiences can offer some form of support or connection. Please take care of yourself and remember, this community is here for you, to listen and support. You are not alone, and your needs are just as important as those you've cared for in your nursing career.
Looking forward to having you as part of our community, and thank you again for your encouragement and for sharing your journey. 😊
A HUGE part of this illness is it heavily affects your sex life with your spouse. It hurts too much and that’s so so so hard on your relationship. 😨
I deeply empathize with what you're expressing. Fibromyalgia undoubtedly impacts all facets of one's life, including intimacy with a partner. It's essential to recognize that the pain and discomfort you feel are valid and real, and it can be incredibly challenging to navigate. Remember that true intimacy extends beyond just the physical, emotional and mental connections play a significant role. Consider discussing your feelings and concerns openly with your partner. By understanding each other's perspectives, you both can explore alternative ways to foster closeness and connection. Professional counselling or therapy might also provide tools and techniques to help strengthen your bond during these tough times.
I am very lucky to be one of the 1 in 3 people who had an excellent response to Cymbalta. However, it significantly reduced my libido and ability to orgasm. One of my docs says it just takes longer to get there, but by then I'm too exhausted! Oh well, the journey is fun too.
@LaurieR88 Sorry for the late reply. It's great to hear that Cymbalta worked out well for you in terms of managing your condition. It's quite a win to be among the 1 in 3 who respond positively to it. But yeah, those side effects like reduced libido and difficulty reaching orgasm can be a real bummer. It sounds like you've got a good sense of humor about it though, and that's awesome. Finding the fun in the journey is a great attitude to have. Keep communicating with your docs and hopefully, you'll find a balance that works for you. Wishing you the best on your health journey!
When you said it in it self was a full time job it made me tear up idk why maybe it was nice to finally hear someone else acknowledge that it is a lot of work to manage a normal mundane life with fribromyalgia and the amount of people that either want to say oh yeah I have that too when they obvioulsy don't or the amount of people that just simply don't understand why you have to cancel on them. Do you ever get frustrated with friends trying to help you when you know they can't. I have a lot of all natural friends that are constantly talk about all this food and workout stuff that I just simply can't do and they think that if I do them I am magically gonna get better after 20 years of dealing with this disease. today and for the last 2 weeks ive been waking up not being able to rotate my arms without sever stabbing pain and it hinders everything even fun or relaxing things
I completely understand , and I'm glad my words resonated with you. Living with fibromyalgia is indeed a full-time job, and it's not something that's easily understood by those who haven't experienced it firsthand.
It can be incredibly frustrating when people dismiss the condition or offer well-intentioned but unrealistic advice. Many of us have friends who mean well but may not fully grasp the complexity of fibromyalgia.
The pain and limitations you're experiencing, like not being able to rotate your arms without severe stabbing pain, is incredibly frustrating and affect all aspects of life, including the things that are supposed to be fun and relaxing. I get those symptoms off and on too.
You're not alone in these feelings, and it's okay to communicate your boundaries and limitations to your friends. Finding ways to connect with others who understand your experience, like support groups or online communities, can be comforting and provide valuable insight and empathy.
Thank you for sharing your feelings. You're not alone on this journey, and there are others who genuinely understand the challenges you face. 🌼💪
I love you. I love every word. Thank you for speaking up for us. ❤
It means so much to know that my words resonate with you and that you feel represented and spoken for. Your appreciation is incredibly motivating. It encourages me to continue speaking up and sharing insights that can make a difference. Knowing that it has a positive impact on you gives me a profound sense of fulfillment and purpose.
Thank you for your kind words and for your support. It's a beautiful reminder of why speaking up and connecting with others is so important. Let's continue to uplift and support each other. Sending you much love and gratitude. ❤️🌟
@tt_looking_glass Amen!!! My channel is about a completely different subject. I was diagnosed in 2016. Filming our skies and doing my art has been what gets me through.
About disability, I have been waiting 3 years. My back was broken in 2020, and this of course, sent my fibromyalgia into a whole new level of hell. I divorced a terrible man after 8 years in 2021.
I don't know how I've gotten through just my teen years let alone, 2020 until now.
You have inspired me to create a different channel, for people like us.
I never complain and keep my pain hidden as much as I can, especially for my daughter. My body is getting to a point where can no longer fake anything.
I suffer depression bc I had to quit working (I was an ophthalmic technician, worked with cataract surgeons, retina and did lasik) so finding purpose is a great struggle.
I have rambled so much.
Bless you, let's keep in touch and maybe together, scream loud enough to be heard and seen.
I wish you as many good days in the future.
You're a beautiful person in and out.
Thank you again and thank you for responding. You are the first person I have watched a video about having this disease. Everyone has said, it's nice knowing you're not a lone......well, it almost brought me to tears and I'm so blessed it was you.
Sorry for the late reply. This message slipped through he cracks. Thanks for sharing your story. It's really impressive how you've found comfort in filming the skies and doing art, especially with everything you've been through since 2016.
It's tough dealing with a broken back and fibromyalgia, not to mention the big life changes like your divorce. You've been through so much, and it's incredible how strong you've been, especially for your daughter.
Starting a new channel for people like us is a fantastic idea. It's hard when you feel like you have to hide your pain, but it's okay to be real about it sometimes.
Leaving your job and finding a new purpose is a big deal, and it's understandable that it's been hard. It's great you're thinking of ways to help yourself and others.
Let's definitely keep in touch. It's good to know we're not alone in this. I'm here if you ever want to chat more. You're doing great, and I'm sending you all the best vibes for more good days ahead. Take care, and thanks again for reaching out. It's nice to connect with someone who gets it.
No worries at all. We absolutely will stay in touch. Of course, you will be my first person I tag when my new channel is ready.
You're so understanding and just wonderful through and through.
❤Allison (AliKat)
Great video! Thank you! I’m about 20 years with fibromyalgia, Hashimoto’s and now inflammatory arthritis. Like you, my biggest struggle is being unreliable to myself and others. The other stuff I find ways to manage, but not being able to be there for myself or others is tough on the emotions, which can make things worse or cause an extended flare.
It’s an endless cycle. Some days I can deal with it, sometimes not. I’m learning to be ok with this. It is what it is mentality. That does seem to help not to beat myself up over what I can’t control. I’ve also been to specialists and naturopaths and found some relief here and there, but flares return at some point with no rhyme or reason to why the flare began or what’s making it worse.
It helps so much to know those of us with this are not alone. Being able to hear your thoughts and read other’s comments is so helpful in this journey.
💗💗💗
Thank you for sharing your experiences and insights. It's clear that you've been on quite a journey, managing your a hand full of health conditions. The struggle with unreliability, both to oneself and to others, can indeed be emotionally taxing and contribute to the cycle of flares.
Acceptance and self-compassion can play a crucial role in managing these conditions.
You're absolutely right that you're not alone in this journey. Finding support and a sense of community among others who understand these challenges can be a source of comfort and strength. Remember that your journey is unique, and it's impressive how you've adapted and learned to navigate through the ups and downs. Keep leaning on the support network you've found, and continue to explore ways to manage and improve your quality of life. Thank you for sharing your thoughts and experiences with us. ♥️
@@tt_looking_glass thank you ☺️
Strong minded is a common theme.
Absolutely! It takes incredible mental strength to cope with the daily challenges and uncertainties that come with this condition. 💪❤️
This has been one of the best videos regarding Fibromyalgia. Thank you! I am in the UK and although we have the wonderful NHS, I am still going to see an alternative doctor, called functional medicine. I feel so sad for my husband having to see me like this.😢
Hi Sarah, Thank you so much for your kind words about the video. I'm glad you found it helpful! It means a lot to me that it could offer some insights into dealing with Fibromyalgia. Seeking out a functional medicine approach sounds like a proactive step, and I hope it brings you some relief and new perspectives on managing your symptoms.
I understand how hard it is to feel like your loved ones are affected by your health struggles. It’s clear you care deeply about how this impacts your husband. It’s okay to feel sad about it, but also know that your strength and courage in facing these challenges are incredibly admirable. You're not alone, and this community is here to support both of you through this journey. Thank you for sharing your experience, and please keep us updated on how things go with the functional medicine doctor. Sending you both lots of strength and support. 💖
Excellent video. The pain morphing into one, you’ll find me sitting in the doctor’s office with my eyes closed trying to concentrate on my right elbow (or whatever). I was diagnosed with fibromyalgia first then cfs, I did get Ross river virus in the middle of both so that was an added bonus.
Oh those damn viruses. I really believe my fibromyalgia was caused by EBV and my POTS and MCAS by Covid.
@@tt_looking_glassseams though time gives is them.all just added stresses as time goes on
This was a great video.
Thank you so much. Glad you enjoyed it. ♥️
Excellent video. I feel people just think I'm being lazy. Others thick I'm incapable of doing anything when I can do some things during better times.
Thanks so much for your kind words about the video! I totally get what you're saying - it's really tough when people misunderstand and think you're just being lazy. Fibro can be so unpredictable, with good days and bad days, and it's frustrating when others don't see that you're actually doing your best. It's important to remember that your worth isn't defined by how much you can do. You know your body and its limits better than anyone. Keep celebrating those better times when you can do things, and don't be too hard on yourself during the tougher moments. Hang in there!
I'm turning 65 in August...
I've had this since my 20s however took until late 30s to be believed and diagnosed!
I can't begin to tell you what horrible things were said to me by so many Drs.... One was a 1st time visit, he told me to go home and give my husband a BJ and I'd be happy and feel so much better!!! I immediately walked out and went to the head of the hospital and filed a formal complaint 🤬😡🤬
Yeah.... I've heard it all.
My last Dr would dismiss anything new, she'd pat my head and tell me Yes... Your getting old, Yes your hormones are wonky but it's to unsafe to treat them ... And Yes you have fibromyalgia.
Guess what
I had CANCER!! Rectal cancer, ud been bleeding for months!
My heart Dr figured it out when I was in ER for my 3rd heart attack! No one else in the hospital noticed that I was severely anemic as I was being prepped for the 3rd stent.
Thank God he's a wonderful person and Dr.
New symptoms are extremely painful neck, arm and shoulder same side where I can barley lift my cup! Oh I just woke up this way, no reason... Over a week now.
Thank you for putting this really well made video up. I subscribed immediately ❣️ I'm looking forward to getting to know you and all the other's here.
Blessings 🕊️
BTW
Every struggle your speaking of here is so correct... And in order!
LoL I have long wavy hair and I won't admit to how long it's been since a full wash 🤭 or a full shower either...
I'm also a caregiver for my husband doing the best I can, and I cared for my mom who has a stroke until she passed two yrs ago... I had to live with her while my husband was in the nursing home for three years... Held hostage due to C19!! We've been back together for 23 months now.
Wait, what??? 🤯 That is crazy! I’m so sorry to hear about your experience with doctors and the delays in receiving a proper diagnosis. It's truly disheartening when medical professionals dismiss or make inappropriate comments about our health concerns. I'm glad you took a stand and filed a formal complaint. Your journey with cancer is a testament to the importance of advocating for yourself and seeking multiple opinions when necessary.
I’m so sorry to hear you have so much pain and difficulty in daily activities. It's important to communicate these changes to your healthcare provider so they can provide appropriate support and treatment.
Thank you for subscribing and joining our community! We're here to support each other and share experiences. It sounds like you've been through a lot as a caregiver for your husband and your late mother. Your strength and resilience are truly admirable.
I'm glad you resonated with the video and I hope it brings you valuable insights and support. Sending you blessings and wishing you all the best on your journey. ❤️
@@tt_looking_glass
Thank you 💓
You as well
I identify with everything you said.. thank you for validating my symptoms.
Hey Wendy, I'm really glad the video resonated with you and helped validate what you're going through. It’s so important to feel seen and understood, especially when dealing with something as complex and often misunderstood as fibromyalgia. Knowing that your symptoms are real and acknowledged can make a big difference in how you cope and manage day-to-day.
Thank you for being a part of our community and for sharing how the video impacted you. It’s connections like these that remind us we’re not alone in our struggles. I’m here, and so is this wonderful community. Take care. ♥️
Great video. I can totally relate.
Thank you so much. ❤️ I’m glad you found it relatable.
@@tt_looking_glass what has changed my fibromyalgia is aquatic PT. It’s amazing. Staying on top of my supplements.
Thank you for the great tips. I have tried swimming before but the problem I find is that I always get cold in the water and when I get cold I get pain. Maybe if I lived in Florida... I should do better with my supplements. Thank you for the reminder.
I think you messy hair bun looks beautiful, brings your eyes out.
Great video, fairly new to diagnosis of fibromyalgia.
Blessings
I'm glad you liked the messy hair bun! And welcome to the Fibromyalgia community, though I'm sorry to hear about your recent diagnosis. It can be a challenging journey, but remember you're not alone, and there's a supportive community out there. If you ever have questions or need to chat about anything related to Fibromyalgia, feel free to reach out. Take care! 💙
Thank you so much for this video. The fatigue, stiffness, muscle/joint pain and the most awful brain fog is truly awful. Has had a massive effect on my life. I am a teacher and now work 3 days a week .. even that i struggle with. The mental exhaustion and my mind going blank ......lack of understanding and knowledge from others makes me feel so guilty. I, too, am not a complainer and hate drawing attention to myself..Family: i find it so hard to say 'no'..and has lead to upsetting times and situations for myself. My adult children fall out with me.. Exercise: i used to be able to walk for miles in our beautiful countryside, no longer...so difficult to pace myself in daily life due to expectations from others. The guilt this condition has caused me is a real thing. Again thank you. Ps i also have very long hair, will never cut it and now only wash it once a week as its a big job to face x
Thank you so much for sharing your experiences with such openness. The challenges of managing fatigue, stiffness, pain, and the dreaded brain fog are very difficult, and hearing how these symptoms impact your life as a teacher is heartbreaking.
It is incredibly tough to balance professional life and personal expectations, especially when you're navigating the lack of understanding from those around you. The guilt you feel is something many in our community can relate to. You're not alone in feeling this way, and it’s important to remember that it’s okay to set boundaries for your health and well-being, even if it’s difficult with family.
Thank you again for being part of this community. You help make it a space where others feel seen, supported and understood. ♥️
Thank you for your kind, supportive words…hugely appreciated.. please do not stop the work you are doing educating the outside world and supporting us who have this misunderstood illness… you take care of yourself… I was told to ‘ pace’ myself… very difficult .. again, big thank you xx
Thank you so much! It really means a lot to know that the content is resonating and providing support. Your gratitude inspires me to keep going and continue spreading awareness and support. Take good care of yourself too!
Everything you say is so true I identify with all of the struggles of fibromyalgia
Thank you for your comment. It's both validating and comforting to know that others can relate to the challenges of fibromyalgia. You're not alone in this journey, and many individuals with fibromyalgia share similar experiences and struggles. Feel free to share your own insights or tips for managing these challenges if you'd like. Together, we can support one another through this journey. 💪💙
Fibro can really wreck your life..my daughter is no longer speaking to me because I told her it's too hard to babysit a 1 year old and 3 year old. It takes me 2 days or more to recover ! And litterrally hurts so bad ..I'm 70😢
I'm really sorry to hear about the struggles you're facing with fibromyalgia and the impact it's had on your relationship with your daughter. It's incredibly tough when the physical limitations and pain affect not just your own well-being but also your family interactions. At 70, dealing with such intense pain and recovery times, it's completely understandable that babysitting young kids feels overwhelming.
It might take some time, but hopefully, your daughter can come to understand the challenges you're facing. Perhaps sharing more about what fibromyalgia involves could help her see things from your perspective. Remember, you're doing your best in a tough situation, and it's okay to set boundaries to take care of your health. You have done your share by raising her. Sending you a lot of strength and hoping for healing and understanding in your family. 💖
Soo true! Fibromyalia is a full time job! And, I can't continue teaching. Thanks for the honesty.Nice hairdo. I use dry shampoo...too often
Yes, managing fibromyalgia often feels like a full-time job. I'm sorry to hear that it has impacted your ability to continue teaching, but I hope you find comfort in the shared experiences within the fibromyalgia community. On a lighter note, I appreciate your comment about my hairdo! Dry shampoo can indeed be a lifesaver, especially on days when managing the symptoms takes all your energy. Wishing you good days ahead!
Love your hair bun! You look so cute!
Ahhh! Thank you so much. I really appreciate the compliment. ❤️
oh my this is so spot on i have cfs but believe i have fibro too. I'm in pain every day have so many symptOns thankfully not at the same time but its real ITS ALL REAL, thank you for posting
I'm truly sorry to hear that you're experiencing this, but thank you for sharing your feelings. Both CFS and fibromyalgia can be so challenging to navigate, and it's heartbreaking to know how many face skepticism or misunderstanding about their symptoms. Please always remember that your pain and symptoms are genuine, and your experiences are valid. The community here understands and supports you. I'm glad the video resonated with you. Remember, you're not alone in this journey, and we're here to uplift and support each other. Sending you strength and compassion. ❤️
Yes, yes, yes, and thank you!! I feel seen and validated ❤ It’s hard to accept by my friends and family that often my body is done after I just finished getting ready for the day, literally. Between the shower, getting dressed and doing my hair and makeup I’m a tired ball of sweat.
I totally get it! I'm so glad you feel seen and validated. It’s really tough when friends and family don’t understand how just getting ready can completely wipe us out. Between the shower, getting dressed, and doing hair and makeup, it’s like running a marathon some days.
You're definitely not alone in this. Sending you lots of love and strength! ❤️
❤thank you
First, love the bun, kinda regret bobbing my own hair now. Second... long bob cut, without bangs, gives the best trade off between ease of care/styling potential
Yes, I hear you. I love bangs but they are so high maintenance. I have been keeping my hair just straight long. No layers, no cut and I find the easiest for styling. Not so easy to wash and dry do to the length but the length also keeps it straight, so there is that.
spot on.