Absolutely, it's a reality that many don't realize. Something as simple as taking a shower can become a daunting task when you're dealing with fibromyalgia. It's those everyday activities that others take for granted, which can sometimes feel like climbing a mountain for us.

I have reached a point in which am having burning sensation and pain throughout my body whenever i share and it drains me to zerooo and cause me headaches 🫠🫠🫠 Most of the new things am facing have been caused by antidepressants…

I just explained to my husband that showering takes so much out of me. More than almost anything else I do. He is understanding but will never truly understand.

Only those who experience will ever understand.

I have to go lay down after a shower. I make sure I leave enough time for that

Your comment made me emotional too. It means so much to hear that my video resonated with you on such a deep level. We know how hard it is to make others understand what we go through, and I'm glad I could help shine a light on it. Thank you for your kind words and for being a loyal sister in pain. Your support and empathy mean the world to me. Extra soft hugs back to you. Let's keep lifting each other up and pushing through together. ♥️

@tt_looking_glass I also showed your video to my mom, she always wants to do things to help me - she really got a better understanding of what I go through & why there's only so much any of us can do.

That's amazing. I'm so glad the video was helpful to your mom and gave her a better understanding of what you're going through. It's so important for our loved ones to grasp the reality of our challenges. Thank you for sharing this with me. Your support and kind words mean a lot. Hang in there, and remember, you're not alone in this journey. 💖

Stacy, I couldn't agree more! It's incredibly validating to see someone else going through what you're experiencing. Fibromyalgia is a condition that can make you feel isolated, so finding that connection in someone else's story can be truly comforting. It's disheartening that the medical community hasn't been able to provide more answers or solutions for Fibromyalgia yet. But in sharing our experiences and supporting each other, we can find a sense of empowerment and understanding. Thank you for your heartfelt comment and for being a part of this community. 💕

Dear Stacy, Please can I let you know about how my local doctors help me. They are brilliant! I am on tramadol and I can take it with paracetamol at same time. Rest. No bad emotions. No upset. 9 hours sleep every night. Healthy food. Lots of healthy quality water-the tap water here is OK. Multi vits and mins. Vit D3. B Complex. Restless legs syndrome I take 2 pram...something. I am tired today and I am resting 50 percent today. BUT...my GPs DO UNDERSTAND and they inform me about fibromyalgia. It causes severe chronic functional constipation so I am on 5 docusate a day too. And my understanding husband, Mr Furry Bear, is so beautiful! I stand up for what I need and want! I am getting better at it. I am autistic ADHD as well as fibromyalgia. I hope this is helpful in some way for you. God bless. Bess in UK x

Going through all you described. I thought it was just me about my bones hurting. 😢

Exactly the same thing and m only 20🙂 its feel like pain in each and every bone

​@@elizabethdarley8646I have adhd autism, Fibromyalgia to. Jesus helps alot❤❤ Jessy typing

Thank you for sharing your experience with fibromyalgia. I’m truly sorry to hear about the intense burning pain you endure. It shows how relentless fibro flares are. Living with this for over a decade requires incredible resilience. If you have any strategies or tips that have helped you manage these symptoms, please feel free to share them. Your insights could be incredibly helpful to others in our community who are navigating similar challenges. Stay strong, and thank you again for reaching out and relating your journey.

@@tt_looking_glass Balance is key. Not restrain my body, mind or emotional state. Soft excercise such as walks and yinyoga which works on faschia. Try to get min 8 hrs sleep at night. I rest many timrs during the day. Filter my water, fruits/berries and greens in lots and make sure stomach functions well. Trippel magnesium in high dose at night and other essential minerals. Liver cleansing herbs. CBD oil. Antiinflammatory such as turmeric and ginger. Unfortubatley I am still having to use pharmacetical painkillers and other meds when the pain is out of control. But with a healthier lifestyle I manage daily life better. Bless you all ❤️

Thanks for sharing your approach to maintaining balance. It sounds like you’ve really honed in on what works for you. Those are all powerful tools for managing health holistically. I hear you on still needing pharmaceutical help at times, despite our best efforts with lifestyle changes, medication is necessary to manage pain and other symptoms. It’s all about finding that right mix that works for you personally. Keep doing what feels right for your body and mind, and thanks for blessing us with your wisdom! Wishing you continued strength and wellness. ❤️

For me its my bones. I have this weird, numbing pain in my bones that sometimes just comes out of nowhere. I feel like I'm only now discovering the sheer extent of all of my symptoms. The tiredness, the brainfog, the memory issues. Its so frustrating because this illness just does EVERYTHING. I still have to learn to live my life with it, despite being diagnosed... I think 8 years now? I've tried to just avoid thinking about it but I think that just hurt me

We are human barometers!! 🤣

I completely understand how you feel. It's incredibly challenging when the things we once enjoyed, like cooking, become sources of stress and exhaustion due to flare-ups. It’s okay to acknowledge that some days are harder than others and to adjust your activities accordingly. Remember, this community is here for you, sharing in the ups and downs and offering support whenever you need it. Take care of yourself.

Yes EVERYTHING is totally overwhelming 🙏🏼

You're definitely not an interloper here; this is a space for everyone who's battling their own challenges, and severe COPD is a tough journey. It's hard when those around you can't fully grasp the extent of what you're going through. The struggle with showers, something so many take for granted, speaks tones about the daily hurdles we face. It's understandable to feel scared about the possibility of passing out, especially when you're living alone. Thank you for sharing your story and for being a part of this community. Your voice adds to the diverse experiences here, and it's valuable. Keep reaching out, keep sharing, and know that you're not alone in this. Take care and stay safe. ♥️🌈

I used to think that it was just when the weather turned bad that affected me but actually it’s like you said any change is a problem. It’s kind of funny because I as a person love change but my body doesn’t. lol! Thanks for your comment.

Dealing with my hair is the hardest aspect of personal hygiene for me, and sometimes it gets neglected. It always makes me happy to have a nice and clean hare. So if I'm in a flare when I get my hair washed is a reason to celebrate.

I completely understand what you're going through. It's like our bodies have their own built-in barometers, right? When the weather starts shifting, it's as if our symptoms become more pronounced, and it can be incredibly disheartening. I know that feeling of wanting to accomplish things but feeling trapped by the unpredictable nature of the condition. There are days when all you want to do is curl up in a ball and disappear. Just remember, you're not alone in this. Many of us in the fibromyalgia community share these weather-related struggles. Sharing our experiences can help us feel more connected and understood. On those tough days, take things one step at a time, and know that there are others who genuinely understand what you're going through. Stay strong, and take good care of yourself. 🌦️💙😔

Thank you. I know other people go through similar experiences and we often feel so alone. I want people to know, though it’s hard, we can get through this. Hopefully someone will find comfort in knowing they are not alone in their struggles.

Ahhh. Thank you so much. 😍

I’m really moved by your empathy and support for your wife. It sounds like she has a strong ally in you, and I appreciate you sharing a bit about her journey with us. The trip to Panama for stem cell treatment is quite intriguing. I haven't heard of stem cell therapy for fibromyalgia before. Could you share more about how it works and how it helped her? It’s incredible how deeply fibromyalgia affects those living with it, from predicting weather changes to managing migraines and chronic fatigue. Thank you for watching the video and connecting here. I hope you both continue to find ways that ease her symptoms and improve her quality of life.

I absolute love that. Would you mind if I turned your advice into a video? I feel a lot more people need to hear it and not everyone reads comments. I would absolutely give you credit for the content.

@@tt_looking_glass of course, anything to help others going through the same thing and by the way this is what I am doing and following now to heal .🙏🙏🙏🙏

It makes me so happy to know that this video has helped someone. I am feeling much better. It did seem like it was never going to end but somehow I just keep pushing through. I guess you could say I have no choice, but the power lies in not losing hope. The weather has been very unstable this spring and I think it has definitely contributed to it. Im hoping that as summer approaches it will get better. Thanks for watching.

I'm so sorry you are going through such a hard time at the moment. It is so hard while we are in the midst of it. It feels like it will never end. It is interesting how the videos that I get the most views are the ones I had no idea how I was going to make a video that week. I just grabbed the camera without any plan and started filming in the hopes that maybe later when I was feeling a bit better I could turn what I had captured into a video. I'm glad it brings people some comfort or hope because it is really hard to pick up the camera when I'm not well. Thank you for telling me that. It is definitely a big boost of confidence in continuing this channel. Feel better soon. 😍

Thank you so much for your comment! It's truly uplifting to connect with someone who understands the challenges of living with fibromyalgia. I'm glad I could bring some laughter to your day and let you know that you're not alone in this journey. You're absolutely right, the Lord understands our pain, and it's through His grace that we find strength and relief. Keeping the faith and continuing to pray is essential, as we trust in God's plan for our lives. Sending you love and prayers as we navigate this fibromyalgia journey. Stay strong! ❤️

Hopefully, this vlog will help people going through similar experiences to not feel so alone. All the best with your journey. I hope you will find my videos helpful. Next week I will be posting a "How to get stuff done when you have a chronic illness" video. Don't miss it. Make sure to subscribe.

Thank you so much for the subscription! ❤️Welcome to this wonderful community. I hope you enjoy the channel. I try to post twice a week (Mondays and Fridays) but sometimes my body just doesn’t cooperate. Im sure you know how it is. When that happens I usually make a community post and let you guys know. I hope the weather where you live is kind to you.

@@tt_looking_glass Oh, I understand completely! I live in Michigan where the weather is a rollercoaster. Allergy season, then snow. I don't know what's worse. But we're in the same boat. I know I'll enjoy everything you're able to film. Maybe enjoy is the wrong word, but commiserate with you!

@@klb374money oh man! Yeah, that is tough weather. Pretty much what we have here in Ontario. My content goes from “cry with me, I’m having a really hard time” to “look at me, I’m living the life!” and everything in between. Lol! I try to be as honest and real as possible so people don’t feel so alone in their journeys but also trying to inspire at the same time. It’s a hard balance but I do my best.

@@tt_looking_glass oh yeah ? "Tin soldier" small faces

@@klb374money interesting EDS channel YT working overtime to limit comments " my VEDS characteristics and diagnosis" Katey Wright channel

Hi Irene, thank you for your kind comment. It means a lot to me. That flare has passed and I have been able to go camping and visit my daughter since. However, I have acquired COVID last week and I’m struggling to recover. I will make a video about how I got it and how it has been to recover from it as soon as I have the energy to pick up a camera.

@@tt_looking_glass I'm so sorry, you must feel absolutely awful. I had Covid back in December and it's not nice at all. Take good care and I'm thinking of you. Look after you! Xxxxxx

Thank you so much for your comment! I'm glad this video resonated with you. It can be a challenging and often misunderstood condition, so sharing personal experiences can help raise awareness and provide support to others who may be going through something similar. I truly hope your upcoming appointment with the Rheumatologist goes well and provides you with the clarity you seek. You're absolutely right that more research and studies are needed to better understand the causes of fibromyalgia and find effective treatments or even a cure. It's an area that still requires further exploration, but advancements are being made and I hope with time answers will be found. In the meantime, it's important to stay hopeful and positive and keep advocating for yourself. Sending you positive thoughts and well wishes as you navigate your journey toward a diagnosis. ❤️

What did the results say?

Chronic fatigue syndrome often accompanies Fibromyalgia. It’s like one is not bad enough. We often deal with multiple chronic illnesses.

Hi Amanda, It sounds like you’re really going through a tough time right now, managing your own flare-ups while also caring for your aging parents and spending time with your grandkids. It’s a lot to handle, and your effort to stay positive and strong for your family is incredible I’m glad you found the yoga sling interesting. I absolutely love mine. it could definitely be a helpful tool for your back and shoulders, providing some relief and support. Taking care of yourself is just as important as the care you provide to others, so I hope the sling brings you some comfort. Thank you for sharing what you are going through and for your kind words. It’s okay to have tough days and not always feel positive. You’re doing your best, and that’s more than enough. Sending you strength and hoping you find some peaceful moments amidst the challenges.

I am so happy that this video provided what you needed. If it brings a little bit of comfort for someone, it was worth sharing. I hope you improve soon. Take care.

Some days, even the simplest tasks feel like climbing a mountain. Showering can be such a battle, but the fact that you're still pushing through is incredible. Keep trucking, you've got a lot of strength and heart! ❤️💪

Hey Catie! I'm so sorry to hear about your long flare and the constant pain you're dealing with. I understand how tough it is to live in bed and feel like you've lost so much. Finding this community where people truly understand what you're going through can be a lifeline, and I'm glad you're here with us. 💜 Showers are a draining and painful task - I totally get that. It's heartbreaking when something that used to be a simple pleasure becomes a source of pain and exhaustion. I've had moments where even the smallest tasks leave me feeling completely wiped out, so I can relate to how discouraging it feels. Please know you're not alone, and it's okay to have those tough days. We're all here to support each other, and I'm sending you the biggest, gentlest hugs. Take it one day at a time, and remember to be kind to yourself. You're incredibly strong, even on the days it doesn't feel like it. 💜

I'm glad you found my channel too and shared your story. Welcome to the community. I understand how frustrating it is to feel so limited by your symptoms, and it's understandable why you're eagerly awaiting a formal diagnosis and proper medication. Proper treatment can make a huge difference. I don't know if you saw some of my more recent videos with the title "Diagnosed with Fibromyalgia? - What I wish I knew." kzfaq.info/get/bejne/jc53nK2ls9fReKs.html and "STOP doing this if you have Fibromyalgia" kzfaq.info/get/bejne/Y5mAldxyxsuqkmw.html . I believe those videos can be very helpful if you have just been diagnosed. I hope they bring you some guidance in your Fibromyalgia journey. Take care. ♥️

I'm so glad you found the channel and that it's helping you feel less alone. It can be incredibly tough when the weather exacerbates symptoms, and it's important to be gentle with ourselves. Remember, taking care of your basic needs is a victory in itself. You are doing your best, and that is enough. Sending you strength and gentle hugs. 💜

I’m so sorry you’re going through this too, Natalie. Fibro flares can be incredibly tough. It helps to know we’re not alone in this. Sending you gentle hugs and hoping for better days ahead for both of us. 💖

Thank you so much for your beautiful message. It means a lot to know that the video resonated with you and that you’re sharing it to help others understand what life with fibromyalgia is like. It’s always my hope that these videos can foster greater empathy and support. I really appreciate your recognition of the energy that goes into creating these pieces, it truly keeps me motivated. God bless you too, and take care! ♥️

I'm truly happy to hear that the video brought you a bit of hope and motivation, especially during such a tough time. Flares are so draining, and finding even a small amount of relief or encouragement is so important. Keep holding onto that hope, and remember that you're not alone in this journey. We're all here to support each other. Stay strong and take care! ♥️

When you are going through a flare it feels like you will never feel better again. It is so hard. I need people to remind me that I have survived other flares. I hope this one improves for you soon, and meanwhile, I hope my videos keep you company.

@@tt_looking_glass thank you for helping. Only been doing diagnosed a year have lost my career and friends and everything to it. You give me hope.

I hear you, and I’m right there with you. The way the weather changes can just knock you out, can’t it? That deep pain in your bones is something only fellow fibro warriors can truly understand. I’m so sorry to hear about your arthritis and the bone spur in your neck. I just did an MRI and they found those in mine too. It’s tough when people don’t get how challenging even the simplest daily tasks can be. Every little thing can feel like a mountain to climb when you’re dealing with so much pain. Just know that you’re not alone in this. Sending you lots of strength and understanding. Take care of yourself, and thank you for sharing your story. 💖

I'm so glad to hear the video spoke to you. It's so important to have spaces where we can share our stories and feel understood. Your message is a reminder of why creating content that resonates with others' experiences is so valuable. ❤️

Hi Teresa, I'm really touched by your message. It's so true that many people don't understand the extent of our struggles because they can't see it. I'm so sorry you're going through this. Your strength to keep going, even with all the pain and challenges, is truly inspiring. Thank you for sharing your experience and for your kind words about the video. I'm glad it resonated with you. Keep holding onto those moments of calm and take care of yourself. ❤️

I'm really sorry to hear you're in such a tough flare. It is exhausting and frustrating, especially when even basic tasks feel overwhelming. I completely understand how draining it is when your brain and body just won't cooperate. Hang in there and remember to be kind to yourself. Rest as much as you can and take things one step at a time. You're not alone in this, our community is here for you. Sending you lots of strength and support. 💖

I'm really sorry to hear about the tough time you're having with your fibromyalgia and chronic migraines. I know how challenging it is when the pain is intense and the usual medications aren't providing relief. Stress and anxiety often contribute to flare-ups in conditions like fibromyalgia. While it's hard to pinpoint the exact cause, managing stress can sometimes help in managing the symptoms. It's okay to take the time you need to rest and recover. It's important to listen to your body. I'm glad you find the channel helpful - that's exactly why I'm here. Know that you're not alone in this, and there's a whole community here who understands and supports you. Take care, and I hope you find some relief soon. ❤

Hey Samantha, thank you so much for all the positivity. 💜 I’m really sorry to hear that you’re going through so much fatigue and pain. I hope you get relief soon and that you have support to get through this. Love you too! Stay strong, and we’ll get through this together. It means a lot to have your support.

@tt_looking_glass Muchly appreciated! Yes we will. Love and Light 💜

Really glad to hear that the video helped you out. It's tough dealing with a flare-up, but it's good to know that seeing others going through the same thing can make you feel less alone. It's a daily battle, for sure. Sending a big high five right back at you, fellow fibro warrior! 😊

I hear you completely. It's so tough when even our closest ones don't understand what we're going through. Pain really is a relentless enemy. Learning to live with it is definitely one of the hardest things ever. The sun can be such a double-edged sword. Great for some, but triggering for us. Hang in there, and thank you for sharing your experience. We're in this together! 🌸🌞

@@tt_looking_glass Thank you so much for your reply. I really appreciate it. Yes the sun is a no no for me now cos it makes me flare up. I used to love the sunshine! Yes. We are in this together. Much love.

@@pacmanghostdude5227 It's like having to say goodbye to something that once brought so much joy. But hey, we find new ways to shine, right? Much love right back at you. 🌼

@@tt_looking_glass Yes, it's a whole new life and the best we can do is try and be positive about it. Much love.

Exactly! ❤️

Thank you so much for your compliment. I know the feeling, I only started feeling better from that flare two days before a camping trip I was really looking forward to. I also vlogged the camping trip (it will be uploaded in two weeks). I didn't know if I was going to be able to go but in the end, it worked out. The advice I would give is to not leave any packing or getting ready for the last minute. The few days before your trip you want to do as little as possible. Start taking Vit D, Zinc and Vit C if you already don't take them (unless there is a contraindication from your doctor) this will support your immune system. Try to get as much sleep the week before your trip and try not to stress (I know... easier said than done). But stress greatly suppressed your immune system. Make sure you keep hydrated at the amusement park (add electrolytes to your water to maximize hydration) and bring a small collapsable stool so you can use it whenever you need to sit down (search for "Portable Folding Tripod Stool" on Amazon) Especially if you will need to lineup. You may even want to consider getting a wheelchair there (parks have them available but you may need to reserve them ahead of time) so you are not exhausting yourself too much with the long walks. I know it's hard at the beginning to accept that we may need help but it's better to use one and have fun than to not use it and be miserable and in bed the next day. Ultimately, accept that you may end up in a flare but you need to decide if having some fun now and again is worth it. For me it is. If you haven't watched my "my baby girl is going to be a pilot" vlog, that is an example where I totally overdid it but it was worth every minute of it. Good luck with your trip, I hope you have a really great time. Ohh and don't forget to bring pain killers, anti-nausea medication etc... They exist for a reason.

Thank you, SO MUCH for the advice!! I was taking these supplements but I've kinda forgot about them. I'm writing this all down. I'm going to watch the vlog you suggested. Thank you so much for all you do!!

You are very welcome. Comments like yours is what keeps me motivated to makes those videos, because let me tell you it’s not easy when you have several chronic illnesses. Also, I will be I interviewed in a Podcast that will be aired on Jun 27 on Aimee Esther KZfaq channel. She also posts content on chronic illnesses. Check her out and don’t miss the podcast on the 27th. You can watch it on her KZfaq channel. The topic is “How to live your best life in spite of chronic illnesses”.

Wow, Gloria, your resilience is truly inspiring! It’s incredible how much you’ve accomplished despite the constant exhaustion and pain. Balancing a 40-hour workweek, regular workouts, walking the dog, and even handling renovations is no small feat. It’s great to hear that you’ve found a supplement that helps with sleep and have reduced your medication significantly. Believing in a cure and pushing through each day with such determination is something to be proud of, even if true happiness feels out of reach right now. Remember, you’re not just existing. You’re making progress and showing immense strength. Sending you lots of love and strength! ❤️

@@tt_looking_glass thank you that’s very kind of you. I’m not sure my approach is the right one…if just pushing through the pain and exhaustion is actually helpful. Like everyone else just trying to figure out how to live with this for now. I really hope that one day this won’t be a reality, and that every person suffering finds a way through. 🙏

@@gloriaradivojevic9221 I wish that too. ❤️

Hi Rachel, thank you so much for your kind comment! I'm sorry to hear that you've been experiencing a fibro/fatigue flare-up for the past two weeks. I can understand how challenging and draining that can be. I truly appreciate you taking the time to watch and share this video. It means a lot to me that you've added it to your "FIBROMYALGIA & CFS HELP" playlist. Sending you lots of love and blessings as you navigate your journey. Stay strong and take care! ♥️

@@tt_looking_glass Hi Daniela! 🐱🌞 Hope I'm spelling your name right 😉 You are SO WELCOME for watching and for adding your vids to my playlist :) I just added more!🤗🎦 Your videos are very interesting and informative! :) Also your video shorts are cute and creative, and some made me laugh! Thank You for the laughter today! "Laughter does good like a medicine" - Psalms 📙📖🐱 Also your videos just greatly encouraged me today that I'm not alone 🦜🦩🐠 And your tips for how to live with fibromyalgia really helped as well! I have some of those tips and protocols in place already...but I may need to find a doctor who is more supportive and helpful about this issue. Also I'm working on moving my body more🚶‍♀️🏄‍♀️ Lol on surfing, yeah right!! 😉 But I do love walking, and that helps. I know the Lord heals our bodies and sometimes it's over time and not instantly, and He gives us natural things too, like herbs and vitamins, which helps our bodies 🌞 My vitamin array is similar to yours...it's pretty grand!! Anyways love and blessings to you too, and I'm so glad you have a loving husband to support you! What a HUGE BLESSING!! Have a wonderful week:) Rachel in Nashville:) P.S.... Your videos have inspired me even more to go ahead and make a new video. Tomorrow is my birthday and I HOPE to make a video tonight or tomorrow. 🎦🎦😉💕🛐

Hi Rachel! 🐱🌞 Thank you so much for your lovely and heartfelt comment! You spelled my name perfectly, and I truly appreciate your kind words and support. I'm thrilled to hear that you find my videos interesting, informative, and even funny! Laughter is indeed a wonderful medicine for the soul, and I'm glad I could bring some joy to your day. I'm touched to know that my videos have encouraged you and made you feel less alone. Dealing with fibromyalgia can be challenging, but finding supportive healthcare professionals and implementing helpful tips and protocols can make a significant difference. I'm glad to hear that you already have some of those in place and that you're working on moving your body more through walking. It's all about finding what works best for you. You're absolutely right that the Lord heals our bodies. Happy early birthday! 🎉🎂 I'm excited to hear that my videos have inspired you to create a new video of your own. What a wonderful way to celebrate your birthday! I wish you all the best with your video creation, and may it bring you joy and fulfillment. I will check out your channel. Thank you for your kind wishes, love, and blessings. Having a supportive husband is indeed a tremendous blessing in my life. I hope you have a fantastic week as well, filled with love, joy, and memorable moments. Take care, Rachel, and once again, happy birthday! 🎉💕

@@tt_looking_glass AWWWW THANK YOU, Daniela!! What a beautiful, sweet reply! You are a very kind person 💗 It's interesting how kind and compassionate people find each other so many times in this big world! You are a blessing to me as well! Thank you for all your kind words and your sweet thoughts! I don't even know you and you made me feel so much BETTER!! 🤗🤗🐹🧡😃 Thank you so very much for your words of encouragement and your kind thought! I actually had another bad flare-up and have been having to rest for like 2 days and had a really disappointing birthday! I did exactly what you warned about, not to overdo it when you have a good day! I'm so bad about that! So I was trying to learn the shuffle dance you know which is the latest trend, and I just tried it very gently in my apartment for like 30 minutes and that was it! Bam I've had to rest for two days straight! I've been in pain but you know what the Lord is here with me and I can tell he's with you too! You live and learn and I'm still learning so much at 53! Many times people think I'm in my thirties which is a blessing :-) I've asked the Lord for years to preserve me, and it works! I had a friend from Jamaica who look way younger than her age whom I met at church, and I asked her how she looks so young, and she said I've been asking the Lord to preserve me! So I started crying that back in 2005 :) now I just need to get this fibromyalgia and lipedema under control... I'm praying and hoping to get surgery for the lipedema and I know that will help a lot 🙏 I hope that you have a beautiful week and I hope that you have really really good days and that you feel blessed and peaceful, my fibro friend! Love and blessings and joy and hugs to you today! Rachel in Nashville:))🐹😺😺😺🐠🧡☕🍨

Oh, wow! Thank you so much for your incredibly kind and heartfelt response! Sorry for the late reply. Sometimes comments get lost in my channel and it can be hard to keep up. It's true how kind and compassionate people often find each other in this vast world. I feel blessed to have connected with you and to be a source of comfort and encouragement. I'm sorry to hear about your recent flare-up and the disappointing birthday. It can be tough when our bodies remind us to take it easy, but rest is essential for our well-being. Learning to listen to our bodies is a continuous journey, and we all have those moments where we push ourselves a little too far. But hey, we live and learn, right? I'm glad you feel the presence of the Lord with you. He's always there, providing strength and support. And it's wonderful that you've been blessed with looking younger than your age. Sending you all my love and prayers as you navigate your fibromyalgia and lipedema journey. May you find relief and healing, and may your surgery bring you much-needed improvement. Know that you're never alone, fibro friend! Love and blessings.

Thank you so much for the kind words.

Hey, welcome to the community! Thanks for sharing your coping strategies and what's been helping you manage your conditions. The shower chair tip is a game-changer for sure-such a simple thing but so impactful for energy conservation and safety. Your approach to personal hygiene, focusing on what needs the most attention, is super practical too. Plus, the advice on magnesium supplements for muscle support is really insightful. It sounds like you’ve got a solid routine with your medications and the heat/ice during flare-ups. Keeping steroids on hand for extended flares and knowing the quick relief options shows how much you’ve navigated through to find what works for you. The milk of magnesia tip for those tougher dysautonomia days is interesting, I had never heard of it. Your post is definitely going to help many out here feeling a bit lost or looking for new strategies to try. Big hugs and thanks for spreading the positivity and support! 🌟

It's always reassuring to hear from someone else who gets the struggle, even down to the oily hair bit. 😅 It's funny how those small details can make us feel more connected. And yeah, finding the motivation to do things can be a real challenge. Sending lots of love back to you from across miles.

Isn’t that crazy!! 😜

Thank you for making this channel, sometimes it’s easy to feel like your all alone or people don’t get this fibromyalgia disease.. it’s so nice to be able to see and share actually.. how very difficult it is to live with this… thank you, thank you! 🥰♥️

@@mindydifilippo5516 thank you for the encouragement ❤️

I'm really sorry to hear about your long battle with pain, especially while being a dentist. Swimming every morning and monthly acupuncture sound like great routines, but it's tough when you lose a trusted acupuncturist. I hope the decrease in stress after retirement brings you much-needed relief. Take care, and I wish you all the best in this new chapter! 😊💖

Thank you for watching my videos. Welcome to the channel. You are definitely not alone. ❤️Flares are the worst! I am very blessed to have such an understanding and helpful husband. I can’t even imagine what it would be like to do this journey on my own. I have also been slacking quite a bit with my vitamins, specially since I had a reaction to them and almost went into anaphylaxis. I’ve been scared to take them ever since but I know they make a difference on my energy levels and immune system. It’s horrible when people think we are lazy. We are anything but lazy. If people had half of our symptoms they wouldn’t get half done of what we accomplish. Everything we do is through pain and pushing our bodies, even when it keeps telling us to stop. It’s heartbreaking. I hope you enjoy my other videos as well. Feel free to comment anytime. I love engaging with my subscribers. Thanks for watching and supporting my channel. I hope you get a bit of a break through the holiday.

Oh Jill, that's so infuriating to hear. It's heartbreaking that you were dismissed like that when you were dealing with such serious conditions. Being told you’re "hysterical" instead of being properly diagnosed is just wrong. I'm glad you finally got the correct diagnosis, but it shouldn’t have taken so long. You’ve been through so much. Thank you for sharing your story with us. 💪🦋

I’m glad this video gave you hope. There is no other way to put it. Flares as hard! The two biggest advice I have is, you need to have patience and they will not last forever. Make sure to get rid of all the guilt of not doing anything but surviving. Find ways to distract yourself and use medications to help with symptoms if they are safe for you to do so. There are two videos that I will be making soon, one is things that help me deal with pain and the other is what to do during a flare. I also have to navigate flares all the time. I have all those video ideas but then I get a flare, or Covid, or migraines… it’s always something. It’s hard to keep a consistent life. For me life with Fibromyalgia is all about constantly adapting, changing plans… at the beginning I used to get angry but now I actually take pride on how resilient I have become. I’m still practicing the patience part, I have always been very impatient but I’m slowly learning that I don’t have to be in control all the time. Because Fibromyalgia is new to you, you are still developing skills to deal with it. You will learn what works for you over time. It makes a lot easier to be surrounded by understanding, loving and supportive people. I hope you start to feel better soon. Remember, you are not alone. Many people are going through a flare right this moment.

Thank you so much for replying to me. Yeh I get cluster migraines and they are horrible. I just trying to adapt to all this pain and my body feels like it is deteriorating. You are a very strong lady and thank you for your advice and videos they are helping me. It’s hard to deal with multiple chronic illnesses that are invisible. I have amazing support around me, just find it hard to explain fibro to them, I have showed them some of your videos and they have slightly better understanding. I have pain killers but sometimes they just don’t do enough. Some nights I think of going to hospital but really not sure what they can even do and I don’t like hospitals. I hope you are doing better and thank you again for helping me and many others.

I completely understand how you feel. The weather can really impact our bodies in ways others might not realize. Showers feeling like needles sound like such a painful experience, but I'm glad you found some relief with baths and salts. It's all about finding those small comforts that help us get through the tough days. Thank you for sharing, and take care. 💜

Me too.... that is all I can say.

It's crazy, isn't it? We should all work at the weather network!! We would probably have a more accurate prediction than the weather people who often get it wrong. 🤣

I’m so sorry to hear you’re in such terrible pain. It really sucks when you can't plan or do anything because of these flare-ups. I know how tough SPS and fibromyalgia can be. Sending you all my love and hoping things ease up for you soon. Hang in there, my friend. 💖💕

@@tt_looking_glass morning my friend, My flare this month is getting so much worse, And the weather being 1deg outdoors has caused a massive flare even hurt my right ankle , I already had a broken knee broken feet, How do we win, this my bones are painful ,And it’s like you dear to the point where what do we do !my husband has been by my side for many years , God love him, So what I’m saying is my independence has gone, and honestly, all you are suffering I,m with you, I have my singing, some days , when I’m strong enough, But like you I overdo it just having a shower now, Also having SPS which I was first diagnosed with, my fatigue is so bad I sleep or have attack of , Narcolepsy, I felt alone for so long thank you , bless you we have to try and stay strong, Best wishes, Judye 🌹

@@tt_looking_glass you got this Stacey , stay strong, if possible, Best wishes, I’m too find bed is too painful now for me, My back , my hips I can’t put pressure anywhere, What and how do you get around this , Not enough cotton wool to swodle a body in, Just sayiing I’m having a terrible teary day, Why because the pain has really hit me bad, This last two days no sleep Getting hubby up not fair on him , But no one listens to us , Not medical care, Drs Etc, Once in the too hard basket you can’t get out, I’m feeling fed up, needed some one too talk too about there illness Hiw do you after years and I was diagnosed Years back ,and the past five years / 2years so much worse, I can’t go out , I panic, Afraid of flares , but Stacey I thank you very much, Keep safe , well, if possible, Judye xx 🌹🌹

Haha, I’m so glad you enjoyed my dinner. LOL Keeping a drawer with special foods for those tough days is such a great idea. I've recently added a portable electric cooler by my bed with snacks like yogurt, fruit, hummus, and water. It makes my life so much easier since I'm often in bed. It's been a game-changer! And yes, body wipes are a great idea! I'm definitely getting some of those. Thanks for sharing your tips. It’s little things like these that make a big difference. Sending you a virtual high-five and a gentle hug!

It’s quite something, isn’t it, how our bodies can show what we’re going through, even in ways as subtle as the look in our eyes? You are very perceptive. It sounds like you and your mom share a deep understanding of each other's experiences during those flare-ups. That kind of connection can be really powerful, knowing someone so close can truly see and understand the pain without needing a word. If you ever feel like sharing more about what you and your mom go through, or if you need a place to find support during those tough times, this community and I are here. Take care, and give my best to your mom.

I totally hear you about our symptoms it showing to the outside world. Fibromyalgia is a diagnosis of exclusion, meaning they will diagnose you if you meet certain criteria but also when they can’t find anything else to blame for your symptoms. It could very well be that you have it but it is wise to have doctors rule out other conditions that could potentially be treated differently. I hope you find some answers and ways to make it more manageable. Definitely having support and people around you who understand you is extremely important for our mental health. I’m glad you found this community. I try to share as much as possible of my health journey to inspire others and help them not feel so alone.

Thanks for the comment. The silk hammock is from Amazon. I have an Amazon store both Canadian and American that have links to all my favorite products. It costs you exactly the same, it just tells Amazon that I am recommending it and they give me a small percentage. So if you decide to buy it, I would appreciate if you could use my link. 😉

I’m so sorry you are going through this too. I hope you have good support and that we get some relief soon. Remember, we are strong and we can do this.

Thank you for the reply, yes I have awesome support diagnosed 2017, recieved permanent disability from , Neurologist, Occupational therapist, psychiatrist and Rheumatologist. Hahhaha, that's South Africa for you. Studied massages therapy unable to practice, but it's been helping a lot with understanding what's happening in my body to help manage my fibro and all the comorbidities so I am just normal crazy now. Sorry but have to keep the sence of humor. Some years are good some are just behond comprehension in full flare. Mental health is so important, physically I am so screwed full body pain, but this to will pass at some point.

@@D.K8637 You are very right about keeping a sense of humour. Thanks for sharing a bit more about your story. It's good to know how other people deal with this condition and how their health care system works.

I am definitely making myself that hammock you are using for those can't sit stand or lay down days. Thank you for that!!!!

@@D.K8637 it is the best!! You can make it yourself or you can buy them at Amazon as a Yoga Hammock.

We are like a walking barometer.

Oh man, I totally feel you on the dry eyes and mouth, depression, and those awful super sweats. Having rheumatoid arthritis and IBS on top of it all must be so tough. Ten years is a long time to deal with all of this. Believe me, I know. I've dad it for over 30 years. I've recently also been diagnosed with Ankylosing Spondylitis, and it adds a whole other layer to it all. Winter can be so brutal, making it nearly impossible to move. I find those colder months really challenging too. Just know that you’re not alone in this, and it’s okay to have those tough days. Hang in there, and thanks for sharing your experience with us. We're all in this together. Sending you lots of warm hugs! 💜

I totally get what you mean about sensing the rain or snow coming! It’s like being a human barometer, right? 😂 I’ve noticed my senses are heightened all the time too. It can be overwhelming, but it also means we’re super in tune with our environment. Glad to know I’m not the only one with this weather-sensing ability! Thanks for sharing and giving me a smile.

I’m so sorry to hear you too suffer from this awful condition. Sending you love and strength.

Firstly, I'm so sorry to hear about your recent experiences, especially dealing with both post-surgery recovery and then catching Covid. It sounds like you've been through a lot, and yet you're still holding on with such a positive outlook. I truly admire your strength. Remember to always prioritize your health and give your body the rest it needs. I hope you see your pneumologist soon and get all the care and support you need. Belated happy birthday to you 🎉. Even though you couldn't celebrate the way you might have wanted, remember that each day you push through is a testament to your resilience. Sending healing vibes your way 💪❤️. Hang in there, brighter days are ahead.

Thanks so much 😊

Thank you so much. I think because Fibromyalgia won’t kill you, it’s not progressive and affects women primarily, there isn’t a big drive for research.

@@tt_looking_glass I understand but many have very poor quality of life and that is sad

@@elizabethconroy7665 I 100% agree and I’m living proof of that declining quality of life. I think Fibromyalgia, or chronic illness in general as a matter of fact, is so complex that unless doctors and scientists start to address the body as whole, completely interconnected, and not as individual organ systems,we will not find a way to recover.

I totally get where you're coming from. Flares affect people in different ways, and I definitely have days when I won't leave my bed and don't say much. I'm lucky to have an understanding husband too. On those really bad days, I won’t be filming, so you most likely won’t see it. We all have our struggles, and it's important to give ourselves grace. Take care!

I'm so sorry you're dealing with such intense pain. It's so frustrating when doctors don't validate our experiences with fibromyalgia. You are not alone, and there are many of us who understand and share your frustration. Thank you for sharing your story and being part of this community. Together, we can continue to raise awareness and support each other through the tough times. Sending strength and understanding your way. 💜

Hello from UK thank you for your reply I wonder if there is a doctor out there with fibromyalgia with the pain we have. I wish the pain would go away rich x

Hello from Canada! I believe Dr. Geneva has fibromyalgia herself and understands the pain we go through. It's always comforting to know that some doctors truly understand our struggles. I wish the pain would go away too. Hang in there, Rich. Sending you lots of support! 💖

Only those who have it will understand❤. I absolutely understand.

That's good but my doctors look at me gone out when asking for help. hospital doctors understand what I am going through I wish it would go away. my wife left me because of this problem she has really hurt me talking to you I don't feel alone if only If I lived in Canada x

Jo, I'm so sorry to hear about everything you've been dealing with for the past 40 years. It's beyond tough when people don’t understand just how exhausting it is, even thinking about what needs to be done. The struggle with exercise, the shower, the insomnia, and the bone-deep aches, I get it. It's like the weather changes and our bodies feel it tenfold. Finding humor, like making music videos is such a great way to cope and bring a bit of fun into the struggle. Hang in there, and know that you’re not alone. Take care and keep finding those little moments of joy. 💖🌟

​@@tt_looking_glass you hang in there too. I really appreciate your videos❤❤

@@JoGray1987 Thank you so much for your encouraging words. ❤️

I’m so glad you found the channel and that it resonates with your experiences. Dealing with chronic pain, neuralgia, and neuropathy is incredibly challenging, and it's has lots of similarities with fibromyalgia symptoms. You're not alone in this journey, and I hope the content here can offer some comfort and useful information as you navigate your symptoms. Stay connected with us here, and don’t hesitate to share more of your story whenever you feel comfortable. Take care and hang in there! 🌟

Hey there, it sounds like you're really going through a tough time with fibro and psoriatic arthritis. Yeah, I totally get how challenging it can be, especially with all those aches and pains. I get a lot of upper back pain when I walk. It's hard to understand why, but it is a thing. And that jerky feeling when trying to sleep? I hear you, it's not easy. Remember, you're not alone in this, and it's always a good idea to talk with your doctor about what you're experiencing. And about POTS (postural orthostatic tachycardia syndrome) , it's basically when your heart rate shoots up after standing up, causing dizziness or even fainting. It's another one of those tricky conditions. Take care and stay strong.

Hey Breona 👋, yes, I do experience palpitations and dizzy spells too. I’ve also been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), so I’m not sure if it’s related to fibromyalgia or if it’s more connected to POTS. I totally understand the frustration with doctors not listening. Just know you’re not alone in this, and what you’re feeling is real. Hang in there, okay? 💛

I get these too. I think I may have POTS or some type of dysautonomia. although my doctors says it could be connected to my fibromyalgia, we'll wait it out and see

40 years is such a long time to deal with fibromyalgia. I was like, "Wow!" But then I realized that for me, it's been 32 years. It's tough when doctors don't have the answers, isn't it? I've tried so many things too, and it still rocks my world everyday. Hang in there and hopefully we’ll keep finding new ways to manage it better. 💜

I’m really sorry to hear you’re going through this. Migraines and fatigue are so draining. When it comes to diet, some people with fibro find that focusing on anti-inflammatory foods helps. Staying hydrated and avoiding processed foods might make a difference too. But honestly, everyone’s body is different, so it’s worth trying a few things to see what works for you. Maybe others here can share what’s helped them? Hang in there; you’re not alone in this. 🌸💜

You've been through quite a challenging journey trying to get a clear understanding of what's happening with your health. It is incredibly frustrating to not be heard or understood by doctors. It’s important to continue advocating for yourself and seeking a doctor who will take the time to thoroughly evaluate your symptoms and consider all possible explanations. It might be helpful to document your symptoms, noting their frequency, severity, and any triggers you've noticed, like weather changes. This can provide useful insights during medical appointments. The overlap of symptoms from different conditions can definitely complicate diagnosis and treatment. It’s understandable to feel exhausted and overwhelmed by this process. Thank you for sharing your story, and I truly hope you find some relief soon. Take care and keep pushing for the answers and support you deserve.

@tt_looking_glass thank you for replying. I think I will do as you have suggested and do a diary. I'm just watching more of your videos for helpful information. Thank you 😊

I’m so glad you are finding the videos helpful. I hope you find the answers you are looking for.

It sounds like you're facing tough challenges with even the most basic daily activities, and I really admire your courage in sharing that with us. It must be so hard to manage those everyday tasks while also wanting to be there for your kids in the way that you’d like. You're doing an incredible job under such difficult circumstances. Remember, every small step you take is a victory, no matter how small it may seem. Please know that this community is here for you, to support you and to remind you that you're not alone in this struggle. Keep reaching out, keep sharing, and keep taking it one day at a time. You're doing better than you think, and we're all here cheering you on.

Yes, pacing really is the key. I do have a hard time doing that and often push myself into a flare.

Thanks for sharing your experience! I'm glad you've found something that works for you, especially during those tough flares.

@@tt_looking_glass thanks for your response. Treatment for Tarlov cyst is treating radiculopothy in the sacrum and the brachial plexus as #1 center of sensory nerve activity. My flares were vivid however haven't had one in almost 4 years. Every person on earth has more pain than me. Different types of injections therapist. Mine was bilateral (trigger point). The diagnosing neurologist should be board certified. Just because imaging has never indicated Tarlov doesn't mean it's not there. Usually located in the sacrum. MRI technique apparently rarely known by doctors.

Thanks for sharing your insights! It's amazing that you haven't had a flare in almost four years. This treatment sounds very specific and intricate. It’s encouraging to hear that l trigger point injections have worked for you. Finding a knowledgeable neurologist is crucial, especially when dealing with conditions that don’t always appear clearly on standard imaging. Thanks again for the valuable information!

@@tt_looking_glass how nice of you say and to respond. Most with fibromyalgia are so beaten down. So unwilling to listen to technical advice specifically. Considered inconsiderate to say anything other than hugs and kisses shared. Hey that's lovely. But this is Important too. Tarlov is all powerful a true player in the of monster category . That doctor's for the most part don't know the MRI technique to detect. Step 1 neurology to detect it. Mine said "what's that" plus I don't believe you nor do I believe in Dr Google. Give the man credit he did confirm it. Okay another pathway around all your facing is to send your MRI CD TO Frank Fiengenbaum nuero-surgeon he does for free so kudos to the #1 expert on earth. Let him diagnose you however I'm not in favor of that excision surgical approach. Look get diagnosed. If negative ? The injection protocol still might work. I feel like it would it's just too powerful. Sounds complicated? For something doctor's aren't exactly is caused by. Not really only two procedures over one month. That's actually beating a monster with a twig. Keep it up your doing great so far. Just go a little bit further. Your closer than you possibly know . Jordan

@@tt_looking_glass your interest interests me . More good news in one month.

It makes sense when you think about it, being able to lay down can really help ease the discomfort and distribute the body's weight more evenly, reducing strain. Plus, the warmth of the water can be super soothing for muscle pain. Definitely worth considering for anyone trying to manage fibro symptoms. Thanks for bringing that up!

I can't get up out of my bath now. I have to stand in my bath to show. I picked a 2 year old child on Sunday and now I am in agony as if I ripped a muscle as well as the usual pain

I'm so sorry to hear that you're in so much pain. It sounds like a really tough situation. I hope you feel better soon. 😥

@@margaretsofocleous1999 Hi. I have a bath lift. It isssupplied by local council. It is brilliant. It lifts me down and brings me up.

Are you referring to art?

Do you mean for pain?

I don’t think I mentioned any supplements in the video but if you are just curious I usually take vit D and magnesium. Occasionally I will take zinc or iron if advised by a health care professional.

Washing your hair can feel like such a luxury sometimes, right? And yeah, after that warm water, all you want to do is sleep.

Some of us somehow power through, some of us work part time and crash on the days off and some of us are on disability because we can’t hold a job and some of us don’t t qualify for disability but also can’t hold a job are supported by family and loved ones.

I'm so sorry to hear about your struggle with pain management and the difficulty in finding a treatment that works for you. It's really hard when the options for relief are limited, especially when pain makes everyday activities, including work, so challenging. I personally take a combination of muscle relaxants, anti-inflammatory and opioids. I'm lucky that my doctor is so understanding. don't give up hope. Keep trying different options and sometimes even getting a second opinion from a different doctor may help. I hope you find a way to get some relief.

Leah, please find a pain clinic that you can go too. I can’t imagine having the pain that we do without medication. Praying that you find help. Keri💜

Here is a link to the exact one I have. It's from Amazon. amzn.to/3VH3P0E

You are spot on really appreciated this vid coz we do feel alone

Thank you so much for your kind words. They really mean a lot to me. I love that this channel is helping people feel validated and less alone. Thank you so much for the comment. Let’s keep supporting each other. ❤️

Oh no, I'm really sorry to hear you're going through a major flare-up right now. They are so tough. Remember to take things easy and give yourself the time and space to rest. It's okay to put your health and well-being first. Is there anything in particular that helps you manage the symptoms? Sending you lots of positive thoughts and hope for a speedy easing of the flare. Hang in there, and take care of yourself. 💜

@@tt_looking_glass thank you for your kind words

Thank you ❤️ I guess it’s how I was feeling.

Yes!!!! The most decadent candy ever! Just a million calories and a million grams of sugar. Perfect to raise dopamine when you are feeling down. Terrible for your health and immune system. 😂 nobody is perfect and we cope the way we cope, right?

@@tt_looking_glass Lol! You gotta do what you gotta do!😆 We don't hv it here in the states, that I've ever seen.

I'm so sorry to hear about your struggles. Living with fibromyalgia is hard enough, and I can't imagine how difficult it must be to deal with homelessness on top of that. Your resilience and strength are truly remarkable. Please know that this community is here to support you. I hope things improve for you soon. Stay strong and take care. 💜