Thank you so very much Daniela for making this absolutely, helpful video for understanding fibromyalgia flare. It’s such a cruel disease. I am grateful and thankful to have found you, your RUclips channel that truly understands the core of fibromyalgia. I truly didn’t understand what a flare is. To be honest, it’s frightening, the fibromyalgia flares. The one fibromyalgia issue that is crucial is sleep. If we don’t sleep, the vicious symptoms are full maximum overdrive of pain and more flares will come just from not sleeping. I learn so much from you, sharing your journey with us. May we find peace and happiness, helping one another. 🦋🦋🦋❤️❤️❤️
Thank you so much for your kind words! I'm really touched that you found the video helpful. Fibromyalgia is indeed an awful disease, and understanding those flares can be so overwhelming. Sleep is such a critical piece of the puzzle, isn't it? Without it, everything just goes downhill I'm so glad to have you here and part of this community where we can support and learn from each other. Here's to finding peace and happiness together! 🦋❤️
Thank you, this was helpful ❤ I’m having a flare up right now. I did way too much last week. I have so much trouble with pacing and I’ve had fibromyalgia for a long time. Hugs to everyone else suffering from a flare right now. Take care of yourself. 😘
I'm so glad you found it helpful! I'm really sorry to hear you're in the middle of a flare-up. It's so easy to overdo things, especially when you're feeling good, only to pay for it later. Pacing is a constant battle, isn't it? I've been there too with my own chronic illness. Sending you big hugs and lots of strength. It's important to remember to be gentle with ourselves. Take good care of yourself and know that you're not alone. 💜
Hi Daniella, thank you so much for this. Over the years mine have become much longer 10 to 12 weeks and then better for another 3 months!! I think the thing that bothers me the most is the frustration. You just want to feel better. The fatigue is horrific and find myself bed bound for the entire time. I may have a good day and get so excited and then the next day it goes back again. I just want to feel better. Patience with myself and doing what my body tells me to do is the only way. I can’t bath because i can’t get into one!! Listening to interesting podcasts and crocheting for others really helps me. I live alone and all my friends live very far away but talk to them regularly. I am also bad with asking for help but I live in an over 50’s building and of course I am the youngest here!!! Asking a 91 year old to help me is stretching it but I did it I had to😂😂 hilarious. Keeping up your sense of humour, listening to podcasts that are helpful. I enjoy Gabor Matte which makes so much sense and Dr Aimee she is brilliant from a medical perspective. Well actually Gabor is also a Dr! Hold onto hope because it WILL END! Love to you all 😊
Hi Amanda, thank you for sharing your journey. Those long flares are brutal, especially with the fatigue keeping you bed-bound. The frustration of wanting to feel better is so real, and it's something I totally understand. It’s amazing that you’ve found ways to manage and keep your spirits up, like listening to podcasts and crocheting. It’s good to hear you’re reaching out for help, even if it’s from a 91-year-old neighbour. Maintaining that positivity and connecting with friends, even from afar, is so important. Patience with yourself and listening to your body is key, and it sounds like you’re doing an incredible job of it. Keep holding onto that hope because, as you said, it will end. Sending you lots of love and strength.
i hurt more before a storm, rain,snow, the pressuregets me. If it is food it is immediate. doing too much always puts me down anywhere from 1 day to 14. I too, always did for everyone else. I am always having to say to people I can not plan ahead, even for drs. appts. Thankyou for having this channel!
Thank you for your sweet words. Weather is a huge influencing factor in my flares. It's like I'm a human barometer. It's hard to explain it to people who haven't experienced it. This is why being part of a community is so important.
I have completely forgotten about nettle tea. I used to drink it all the time. It's pretty rich in iron too. I'm going to order some, thank you for the reminder! I didn't know it was good for allergies. That will come in really handy. 😊
Thank you so much for your channel and your insights. Your vulnerability in sharing your experiences with the world is such a gift for all of us suffering with this disease. Finding someone who understands and makes a fibro sufferer feel seen is such a relief. May you and your beautiful family be blessed all the days of your lives. (And your dress and lip color are so perfect for your complexion! Gorgeous!)
Thank you so much for your kind words. It means the world to me to know that sharing my experiences can make a difference for others dealing with this disease. Connecting with fellow fibro sufferers and helping each other feel seen and understood is why I do this. May we all find moments of peace and strength through this journey. And thank you for the lovely compliment on my dress and lip color! You’ve put a big smile on my face today. 😊
I remember decades ago when I asked my doctor how long the flare would last, he said how long is a piece of string. He also said follow your body, don’t fight against it. Like you said, don’t stop moving (if possible), even if it’s just shuffling around your home. I know I’m very lucky to have understanding people in my home, can’t say most of them are helpful, but they are understanding. I had to go for my doctors appointment yesterday, so other illnesses are flaring now which I know will set off a fibro flare soon. Another great video, thank you xxx
That saying, "how long is a piece of string," really hits home, doesn't it? Flares are so unpredictable. Your doctor’s advice about following your body and not fighting against it is spot on. Moving gently, even if it's just a little bit, can make a difference. Having understanding people around you, even if they aren’t always helpful, is half the battle. It's tough when other illnesses start flaring up and you know a fibro flare is on the horizon. You're managing so well with all of this. Thank you for your kind words about the video! It means a lot. How do you usually prepare for a flare when you feel one coming on?
@@tt_looking_glass How do I prepare for a flare? I just usually slow right down, I’m not good at pacing generally but when I feel a flare coming on, I try real hard to do it. ❤️
Hi Daniela, it’s late and I just watched your recent message. I’m experiencing a flare right now and it’s been very hard to get my 8-9 hours of sleep. I’ve been lucky to get around half of that. This has been going on for over two weeks now and I’m just so, so tired. I thank you for your channel and having a place to communicate the way I’m feeling with others who understand what I’m going through. I’m not going to say much more except that I thank you for your eloquence and professionalism in the production of your videos. So many RUclipsrs have a hard time getting around to the point, and that is never been a problem with you. Thanks for the encouragement, wisdom and advice and I will try to make a plan for dealing with flares in the future. Right now I’m just trying to figure out how to cope with the heat wave that is coming to much of the country in a day or so. I hope you are well and don’t worry I will figure this out with the support and help of my beloved wife. Thank you again and may God richly bless you and your dear ones!
Hope things ease up for you soon, it’s so hard when you can’t sleep reasonably. Good luck with the heat wave, I know for me heat is brutal, so truly, best of luck.
@@cathie-aussiegirl6547 Thanks for your support. We’re having really screwy weather here in parts of the US. Last week it was so cold at night we had to close our windows and one night I was tempted to put on the furnace. Best wishes to you too, it must be winter down under, hope your weather is moderate and you’re feeling well!
@lumberlikwidator8863 I'm really sorry to hear you're going through such a tough flare right now. Getting enough sleep can be such a challenge, especially when you're dealing with constant pain and fatigue. It sounds like you're really pushing through and doing your best, and I admire that. Thank you so much for your kind words about the channel. It means a lot to know that you find the videos helpful and to the point. I always aim to provide useful and concise information because I know how precious our energy is. With the heat wave coming, staying cool is going to be crucial. Maybe try keeping a damp cloth nearby to cool your skin or using a fan to circulate the air. And it's wonderful to hear that you have the support of your wife; having someone by your side who understands can make such a difference. Hang in there, and don't hesitate to reach out if you need to vent or seek advice. We're all here to support each other. Take care and may you find some relief and rest soon. Blessings to you and your wife! How do you usually cope with the heat during flares? I might to a video on that.
@@tt_looking_glass Thank you for your kind reply to my comment. It shows how truly dedicated you are to helping our community through the spread of knowledge and sometimes just a few kind words of encouragement that bring a smile and help to ease the pain. Our weather has moderated and we’re back down into the high seventies. (What’s that in Celsius?) I think that doing a video on coping with flares in hot, sticky weather is a great idea. We live in an older house that is not equipped with A/C, and it’s crucial to keep air moving throughout the house. At night we have a fan blowing out the front to draw cool air in through the back. Another thing we do all summer is to keep bottles of iced tea in the freezer. We fill them about two-thirds full of tea and put them in the freezer so that they are tilted about forty-five degrees. When we need them we fill them up the rest of the way with water or more iced tea. The drinks stay cold a long time. Today I did some yard work and took a lot of little breaks to enjoy an ice-cold drink. We also have these little bottles that have a fan on top and a trigger so you can mist your face and enjoy the cool water and moving air. These bottles are a life-saver during really hot spells. They operate on two AA batteries and we keep them in the fridge too. I bought ours at Dick’s Sporting Goods, but I bet you can get them on Amazon. I’m feeling a lot better the past few days. One thing that helped was to keep regular hours as much as possible. Trying to eat meals at the same time every day, and of course going to bed at the same time every night. Another thing I was doing wrong was not taking my meds at the same times each day. A chat with our pharmacist pointed me in the right direction. So thank you for your support and kind reply. Remember that you are in my thoughts and prayers, and I’m sure that all your subscribers are hoping that you will be approved for the right medicine to help with your ankylosing spondylitis!
Thank you for your kind words and for sharing your tips and experiences! It means a lot to me. High seventies in Fahrenheit is around 25 degrees Celsius. I love the idea of doing a video on coping with flares in hot, sticky weather. Your strategies for staying cool, especially in a house without A/C, are fantastic! The iced tea bottles and misting fans sound like lifesavers. I'm glad to hear you're feeling better the past few days. Keeping regular hours and taking meds at the same time each day can make a big difference. It's great that your pharmacist could help point you in the right direction. Thank you for your thoughts and prayers. It really helps to know there's such a supportive community out there. I'll keep everyone updated on my journey. 💖
I am also in a flare and I think it been one month or longer. My legs feel like someone is pouring hot lava in them and it doesn’t matters which position I am in . I have one adult daughter and a granddaughter and I have three boys to take care and two of them has special needs. I also struggle with asking for help . I stay in my room pretty much all the time. I use to be so active but I can’t now . I am struggling to find a medication that will work on me . I am going crazy with being in pain all the time . I need to be there for my kids and granddaughter
I’m so sorry to hear you’re going through such a long flare. And with so much on your plate, it's no wonder you’re feeling overwhelmed. Taking care of your daughter, granddaughter, and three boys, especially with two having special needs, is a huge responsibility. It’s no wonder you’re struggling. I think we all feel that way sometimes. Staying in your room and feeling like you can't be active anymore is so hard, especially when you're used to being on the go. Finding the right medication can be a nightmare, I get it. The trial and error process feels never-ending and exhausting. Just know that it's okay to ask for help - you’re carrying a lot, and you deserve support. I’m here with you in spirit, sending you strength and gentle hugs. You’re doing an incredible job, even when it doesn’t feel like it. Your kids and granddaughter are lucky to have you. Take care and keep fighting. Your Fellow Fibro Fighter ♥️
I’m glad this video came out just in time! I’m currently going through a flare up right now and I’m spotting on my menstrual cycle. It’s not easy dealing with it, but this month will make a year since I’ve been diagnosed with Fibro. The thing I notice is that I always learn something new whenever I experience a flare up every 3-4 months. I get flare ups when it’s really hot or cold temperatures or poor sleep or stress. Recently, it was so hot in GA and I was feeling anxious because I have doctors appointments this week and I didn’t get good night sleep because of my PMDD. It was complex and I tried yoga and meditation and walking and move around the house and meditate on my bible as a Christian to keep myself together. It’s not easy for me at all because it has been a very emotional week for me too. With this flare up, I’m shocked at how much I was opened to support my body the best way I could, but learn something new at the same time. Thank you for sharing this video how everyone’s Fibro flare ups are different and I tried to tell my family and friends that but they don’t understand that. Mine usually last 1.5 week and my flare ups are seasonal compared to how it was when I first had them last year when it used to be every 3 weeks because I learned to manage them over time. I still tried to hold on and be hopeful. I’m learning how to control my fatigue, social time, and sensory overload because they get very triggered during my flare ups. I even minimize my social interactions with people during this time too. So, I’m wondering how all of you handle them during your flare ups?
The best way is to do whatever your body is telling you, rest, sleep, have a shower or bath. Control the pain, as much as possible and let you healthcare provider know if the regimen you are on doesn’t work. The thing is that no one really understands what the pain is like, they don’t understand the fatigue. You are not alone we understand keep coming back to this channel and read comments. Take care Amanda
@sanaaangel95 First of all, I want to give you a big virtual hug because it sounds like you've been through a lot. It’s amazing how much you've learned about your body and how to manage your flares in just a year. It’s definitely not easy, but it sounds like you’re doing an incredible job with the resources and strategies you’ve found helpful. I totally get what you mean about the weather, poor sleep, and stress being big triggers. It's like a perfect storm sometimes, right? I've also found that practicing mindfulness and engaging with my faith really helps me center myself, especially during those tough times. Your resilience is truly inspiring, especially in how you’ve learned to support your body and minimize those social interactions when needed. It's so important to listen to our bodies and give ourselves grace during flare-ups. As for handling flare-ups, I’ve found that a routine of gentle movement, staying hydrated, and getting as much sleep as possible helps. Also, communicating openly with friends and family about what I’m going through helps them understand a bit better, even if they can’t fully grasp it. Hang in there, Sanaa! You're doing great, and I’m really glad you found the video helpful. 💖
@amandafoxton6463 You nailed it, Amanda. Listening to our bodies is key, whether it’s taking a nap, enjoying a warm bath, or just resting. Pain and fatigue are so hard to explain to those who haven’t felt it themselves, but knowing we have a community here that truly gets it makes a world of difference. Thank you for sharing your wisdom and encouragement. It’s a reminder that we’re not alone and that there’s always support here.
I'm trying to watch all your videos, I learn more from you than my doctors. Keep going! I'm in a particularly bad flare right now & I'm not able to do anything - so I'm just watching videos and sleeping. Extra soft hugs to you & all of us struggling through. ✌🏻🩵 - Your Sister in Pain
Thank you so much for your support and for watching the videos. It means a lot to hear that you’re learning here. I'm so sorry to hear you're in a bad flare right now. Sometimes just resting and watching videos is all we can manage, and that's okay. I do a lot of that! Sending you extra soft hugs right back. Take care and be gentle with yourself.
For someone who got diagnosed since Nov last year, I still not know what exactly is a flare as I have been feeling crap every single day since months before my diagnosis... So am I in a flare for the last whole year? I guess no one knows until I hit an even worse period of pain? 😢
I totally get how confusing and frustrating this is. Getting diagnosed and still feeling like crap every day makes it hard to pinpoint what's a flare and what's just the new normal. When a flare lasts for too long I even wonder if this is my new baseline. A flare can feel like an intensified period of symptoms, but when you’re in constant pain, it’s tough to distinguish. It’s possible you’ve been in a long flare, or maybe it's just been a rough baseline. Sometimes, unfortunately, we don’t realize we’re in a flare until things get even worse, which is so unfair. Just know you’re not alone in this. It can take time to figure out your patterns and triggers. Hang in there, and keep reaching out for support. Sending you a gentle hug and lots of strength. 😢 ♥️ your fellow Fibro fighter
I was like you, Daniela. My family and friends could come to me for support. I still have a really hard time asking for help or saying no to things when I’m feeling bad. Of course that just makes the flares worse. Thank you for all the information! Have you been able to start any treatments for your ankylosis spondylitis? I hope it’s ok to ask… 💕
Hi Debra, I totally get that, it’s so hard to ask for help when we’re used to being the strong ones for everyone else. It’s a tough habit to break, and like you said, it can make our flares worse when we push ourselves too much. Thank you for your kind words and for sharing your experience. It’s absolutely okay to ask, and I appreciate your concern. I’ve been exploring some management techniques such as stretches, heat therapy and swimming while waiting for my rheumatologists here in Canada to see me. I also want to start physio soon. Today I am doing the last MRI, the one for the SI joint. Hopefully, my doctor will see me soon after that and hopefully, I can start treatment. I will definitely keep you guys posted.
Thank you so very much Daniela for making this absolutely, helpful video for understanding fibromyalgia flare. It’s such a cruel disease. I am grateful and thankful to have found you, your RUclips channel that truly understands the core of fibromyalgia. I truly didn’t understand what a flare is. To be honest, it’s frightening, the fibromyalgia flares. The one fibromyalgia issue that is crucial is sleep. If we don’t sleep, the vicious symptoms are full maximum overdrive of pain and more flares will come just from not sleeping. I learn so much from you, sharing your journey with us. May we find peace and happiness, helping one another. 🦋🦋🦋❤️❤️❤️
Thank you so much for your kind words! I'm really touched that you found the video helpful. Fibromyalgia is indeed an awful disease, and understanding those flares can be so overwhelming. Sleep is such a critical piece of the puzzle, isn't it? Without it, everything just goes downhill I'm so glad to have you here and part of this community where we can support and learn from each other. Here's to finding peace and happiness together! 🦋❤️
Thank you, this was helpful ❤ I’m having a flare up right now. I did way too much last week. I have so much trouble with pacing and I’ve had fibromyalgia for a long time. Hugs to everyone else suffering from a flare right now. Take care of yourself. 😘
I'm so glad you found it helpful! I'm really sorry to hear you're in the middle of a flare-up. It's so easy to overdo things, especially when you're feeling good, only to pay for it later. Pacing is a constant battle, isn't it? I've been there too with my own chronic illness. Sending you big hugs and lots of strength. It's important to remember to be gentle with ourselves. Take good care of yourself and know that you're not alone. 💜
Thank you ❤
Extra soft hugs to you!
I hope your flare settles down soon.
Thank you.
Hi Daniella, thank you so much for this. Over the years mine have become much longer 10 to 12 weeks and then better for another 3 months!! I think the thing that bothers me the most is the frustration. You just want to feel better. The fatigue is horrific and find myself bed bound for the entire time. I may have a good day and get so excited and then the next day it goes back again. I just want to feel better. Patience with myself and doing what my body tells me to do is the only way. I can’t bath because i can’t get into one!! Listening to interesting podcasts and crocheting for others really helps me. I live alone and all my friends live very far away but talk to them regularly. I am also bad with asking for help but I live in an over 50’s building and of course I am the youngest here!!! Asking a 91 year old to help me is stretching it but I did it I had to😂😂 hilarious. Keeping up your sense of humour, listening to podcasts that are helpful. I enjoy Gabor Matte which makes so much sense and Dr Aimee she is brilliant from a medical perspective. Well actually Gabor is also a Dr! Hold onto hope because it WILL END! Love to you all 😊
Hi Amanda, thank you for sharing your journey. Those long flares are brutal, especially with the fatigue keeping you bed-bound. The frustration of wanting to feel better is so real, and it's something I totally understand. It’s amazing that you’ve found ways to manage and keep your spirits up, like listening to podcasts and crocheting.
It’s good to hear you’re reaching out for help, even if it’s from a 91-year-old neighbour. Maintaining that positivity and connecting with friends, even from afar, is so important.
Patience with yourself and listening to your body is key, and it sounds like you’re doing an incredible job of it. Keep holding onto that hope because, as you said, it will end. Sending you lots of love and strength.
i hurt more before a storm, rain,snow, the pressuregets me. If it is food it is immediate. doing too much always puts me down anywhere from 1 day to 14. I too, always did for everyone else. I am always having to say to people I can not plan ahead, even for drs. appts. Thankyou for having this channel!
Thank you for your sweet words. Weather is a huge influencing factor in my flares. It's like I'm a human barometer. It's hard to explain it to people who haven't experienced it. This is why being part of a community is so important.
@@tt_looking_glass my thermostat is messed up! Nettle tea helps with brain fog and allergies!
I have completely forgotten about nettle tea. I used to drink it all the time. It's pretty rich in iron too. I'm going to order some, thank you for the reminder! I didn't know it was good for allergies. That will come in really handy. 😊
Thank you so much for your channel and your insights. Your vulnerability in sharing your experiences with the world is such a gift for all of us suffering with this disease. Finding someone who understands and makes a fibro sufferer feel seen is such a relief.
May you and your beautiful family be blessed all the days of your lives.
(And your dress and lip color are so perfect for your complexion! Gorgeous!)
Thank you so much for your kind words. It means the world to me to know that sharing my experiences can make a difference for others dealing with this disease. Connecting with fellow fibro sufferers and helping each other feel seen and understood is why I do this.
May we all find moments of peace and strength through this journey.
And thank you for the lovely compliment on my dress and lip color! You’ve put a big smile on my face today. 😊
You always have such a positive vibe to your videos!🤍
🥰 thank you
I remember decades ago when I asked my doctor how long the flare would last, he said how long is a piece of string. He also said follow your body, don’t fight against it. Like you said, don’t stop moving (if possible), even if it’s just shuffling around your home. I know I’m very lucky to have understanding people in my home, can’t say most of them are helpful, but they are understanding. I had to go for my doctors appointment yesterday, so other illnesses are flaring now which I know will set off a fibro flare soon. Another great video, thank you xxx
That saying, "how long is a piece of string," really hits home, doesn't it? Flares are so unpredictable. Your doctor’s advice about following your body and not fighting against it is spot on. Moving gently, even if it's just a little bit, can make a difference.
Having understanding people around you, even if they aren’t always helpful, is half the battle. It's tough when other illnesses start flaring up and you know a fibro flare is on the horizon. You're managing so well with all of this.
Thank you for your kind words about the video! It means a lot. How do you usually prepare for a flare when you feel one coming on?
@@tt_looking_glass How do I prepare for a flare? I just usually slow right down, I’m not good at pacing generally but when I feel a flare coming on, I try real hard to do it. ❤️
Hi Daniela, it’s late and I just watched your recent message. I’m experiencing a flare right now and it’s been very hard to get my 8-9 hours of sleep. I’ve been lucky to get around half of that. This has been going on for over two weeks now and I’m just so, so tired. I thank you for your channel and having a place to communicate the way I’m feeling with others who understand what I’m going through. I’m not going to say much more except that I thank you for your eloquence and professionalism in the production of your videos. So many RUclipsrs have a hard time getting around to the point, and that is never been a problem with you. Thanks for the encouragement, wisdom and advice and I will try to make a plan for dealing with flares in the future. Right now I’m just trying to figure out how to cope with the heat wave that is coming to much of the country in a day or so. I hope you are well and don’t worry I will figure this out with the support and help of my beloved wife. Thank you again and may God richly bless you and your dear ones!
Hope things ease up for you soon, it’s so hard when you can’t sleep reasonably. Good luck with the heat wave, I know for me heat is brutal, so truly, best of luck.
@@cathie-aussiegirl6547 Thanks for your support. We’re having really screwy weather here in parts of the US. Last week it was so cold at night we had to close our windows and one night I was tempted to put on the furnace. Best wishes to you too, it must be winter down under, hope your weather is moderate and you’re feeling well!
@lumberlikwidator8863 I'm really sorry to hear you're going through such a tough flare right now. Getting enough sleep can be such a challenge, especially when you're dealing with constant pain and fatigue. It sounds like you're really pushing through and doing your best, and I admire that.
Thank you so much for your kind words about the channel. It means a lot to know that you find the videos helpful and to the point. I always aim to provide useful and concise information because I know how precious our energy is.
With the heat wave coming, staying cool is going to be crucial. Maybe try keeping a damp cloth nearby to cool your skin or using a fan to circulate the air. And it's wonderful to hear that you have the support of your wife; having someone by your side who understands can make such a difference.
Hang in there, and don't hesitate to reach out if you need to vent or seek advice. We're all here to support each other. Take care and may you find some relief and rest soon. Blessings to you and your wife! How do you usually cope with the heat during flares? I might to a video on that.
@@tt_looking_glass Thank you for your kind reply to my comment. It shows how truly dedicated you are to helping our community through the spread of knowledge and sometimes just a few kind words of encouragement that bring a smile and help to ease the pain. Our weather has moderated and we’re back down into the high seventies. (What’s that in Celsius?) I think that doing a video on coping with flares in hot, sticky weather is a great idea. We live in an older house that is not equipped with A/C, and it’s crucial to keep air moving throughout the house. At night we have a fan blowing out the front to draw cool air in through the back. Another thing we do all summer is to keep bottles of iced tea in the freezer. We fill them about two-thirds full of tea and put them in the freezer so that they are tilted about forty-five degrees. When we need them we fill them up the rest of the way with water or more iced tea. The drinks stay cold a long time. Today I did some yard work and took a lot of little breaks to enjoy an ice-cold drink. We also have these little bottles that have a fan on top and a trigger so you can mist your face and enjoy the cool water and moving air. These bottles are a life-saver during really hot spells. They operate on two AA batteries and we keep them in the fridge too. I bought ours at Dick’s Sporting Goods, but I bet you can get them on Amazon.
I’m feeling a lot better the past few days. One thing that helped was to keep regular hours as much as possible. Trying to eat meals at the same time every day, and of course going to bed at the same time every night. Another thing I was doing wrong was not taking my meds at the same times each day. A chat with our pharmacist pointed me in the right direction.
So thank you for your support and kind reply. Remember that you are in my thoughts and prayers, and I’m sure that all your subscribers are hoping that you will be approved for the right medicine to help with your ankylosing spondylitis!
Thank you for your kind words and for sharing your tips and experiences! It means a lot to me. High seventies in Fahrenheit is around 25 degrees Celsius. I love the idea of doing a video on coping with flares in hot, sticky weather. Your strategies for staying cool, especially in a house without A/C, are fantastic! The iced tea bottles and misting fans sound like lifesavers.
I'm glad to hear you're feeling better the past few days. Keeping regular hours and taking meds at the same time each day can make a big difference. It's great that your pharmacist could help point you in the right direction.
Thank you for your thoughts and prayers. It really helps to know there's such a supportive community out there. I'll keep everyone updated on my journey. 💖
I am also in a flare and I think it been one month or longer. My legs feel like someone is pouring hot lava in them and it doesn’t matters which position I am in . I have one adult daughter and a granddaughter and I have three boys to take care and two of them has special needs. I also struggle with asking for help . I stay in my room pretty much all the time. I use to be so active but I can’t now . I am struggling to find a medication that will work on me . I am going crazy with being in pain all the time . I need to be there for my kids and granddaughter
I’m so sorry to hear you’re going through such a long flare. And with so much on your plate, it's no wonder you’re feeling overwhelmed.
Taking care of your daughter, granddaughter, and three boys, especially with two having special needs, is a huge responsibility. It’s no wonder you’re struggling. I think we all feel that way sometimes. Staying in your room and feeling like you can't be active anymore is so hard, especially when you're used to being on the go.
Finding the right medication can be a nightmare, I get it. The trial and error process feels never-ending and exhausting. Just know that it's okay to ask for help - you’re carrying a lot, and you deserve support.
I’m here with you in spirit, sending you strength and gentle hugs. You’re doing an incredible job, even when it doesn’t feel like it. Your kids and granddaughter are lucky to have you.
Take care and keep fighting.
Your Fellow Fibro Fighter ♥️
I’m glad this video came out just in time! I’m currently going through a flare up right now and I’m spotting on my menstrual cycle. It’s not easy dealing with it, but this month will make a year since I’ve been diagnosed with Fibro.
The thing I notice is that I always learn something new whenever I experience a flare up every 3-4 months. I get flare ups when it’s really hot or cold temperatures or poor sleep or stress. Recently, it was so hot in GA and I was feeling anxious because I have doctors appointments this week and I didn’t get good night sleep because of my PMDD. It was complex and I tried yoga and meditation and walking and move around the house and meditate on my bible as a Christian to keep myself together. It’s not easy for me at all because it has been a very emotional week for me too. With this flare up, I’m shocked at how much I was opened to support my body the best way I could, but learn something new at the same time.
Thank you for sharing this video how everyone’s Fibro flare ups are different and I tried to tell my family and friends that but they don’t understand that. Mine usually last 1.5 week and my flare ups are seasonal compared to how it was when I first had them last year when it used to be every 3 weeks because I learned to manage them over time. I still tried to hold on and be hopeful. I’m learning how to control my fatigue, social time, and sensory overload because they get very triggered during my flare ups. I even minimize my social interactions with people during this time too. So, I’m wondering how all of you handle them during your flare ups?
The best way is to do whatever your body is telling you, rest, sleep, have a shower or bath. Control the pain, as much as possible and let you healthcare provider know if the regimen you are on doesn’t work. The thing is that no one really understands what the pain is like, they don’t understand the fatigue. You are not alone we understand keep coming back to this channel and read comments. Take care Amanda
@sanaaangel95 First of all, I want to give you a big virtual hug because it sounds like you've been through a lot. It’s amazing how much you've learned about your body and how to manage your flares in just a year. It’s definitely not easy, but it sounds like you’re doing an incredible job with the resources and strategies you’ve found helpful.
I totally get what you mean about the weather, poor sleep, and stress being big triggers. It's like a perfect storm sometimes, right? I've also found that practicing mindfulness and engaging with my faith really helps me center myself, especially during those tough times.
Your resilience is truly inspiring, especially in how you’ve learned to support your body and minimize those social interactions when needed. It's so important to listen to our bodies and give ourselves grace during flare-ups.
As for handling flare-ups, I’ve found that a routine of gentle movement, staying hydrated, and getting as much sleep as possible helps. Also, communicating openly with friends and family about what I’m going through helps them understand a bit better, even if they can’t fully grasp it.
Hang in there, Sanaa! You're doing great, and I’m really glad you found the video helpful. 💖
@amandafoxton6463 You nailed it, Amanda. Listening to our bodies is key, whether it’s taking a nap, enjoying a warm bath, or just resting. Pain and fatigue are so hard to explain to those who haven’t felt it themselves, but knowing we have a community here that truly gets it makes a world of difference. Thank you for sharing your wisdom and encouragement. It’s a reminder that we’re not alone and that there’s always support here.
I'm trying to watch all your videos, I learn more from you than my doctors. Keep going!
I'm in a particularly bad flare right now & I'm not able to do anything - so I'm just watching videos and sleeping.
Extra soft hugs to you & all of us struggling through. ✌🏻🩵
- Your Sister in Pain
Thank you so much for your support and for watching the videos. It means a lot to hear that you’re learning here. I'm so sorry to hear you're in a bad flare right now. Sometimes just resting and watching videos is all we can manage, and that's okay. I do a lot of that! Sending you extra soft hugs right back. Take care and be gentle with yourself.
@@tt_looking_glass 🫶🏼
For someone who got diagnosed since Nov last year, I still not know what exactly is a flare as I have been feeling crap every single day since months before my diagnosis... So am I in a flare for the last whole year? I guess no one knows until I hit an even worse period of pain? 😢
I totally get how confusing and frustrating this is. Getting diagnosed and still feeling like crap every day makes it hard to pinpoint what's a flare and what's just the new normal. When a flare lasts for too long I even wonder if this is my new baseline.
A flare can feel like an intensified period of symptoms, but when you’re in constant pain, it’s tough to distinguish. It’s possible you’ve been in a long flare, or maybe it's just been a rough baseline. Sometimes, unfortunately, we don’t realize we’re in a flare until things get even worse, which is so unfair.
Just know you’re not alone in this. It can take time to figure out your patterns and triggers. Hang in there, and keep reaching out for support. Sending you a gentle hug and lots of strength. 😢 ♥️
your fellow Fibro fighter
@@tt_looking_glass exactly!
I was like you, Daniela. My family and friends could come to me for support. I still have a really hard time asking for help or saying no to things when I’m feeling bad. Of course that just makes the flares worse. Thank you for all the information! Have you been able to start any treatments for your ankylosis spondylitis? I hope it’s ok to ask… 💕
Hi Debra, I totally get that, it’s so hard to ask for help when we’re used to being the strong ones for everyone else. It’s a tough habit to break, and like you said, it can make our flares worse when we push ourselves too much.
Thank you for your kind words and for sharing your experience. It’s absolutely okay to ask, and I appreciate your concern. I’ve been exploring some management techniques such as stretches, heat therapy and swimming while waiting for my rheumatologists here in Canada to see me. I also want to start physio soon. Today I am doing the last MRI, the one for the SI joint. Hopefully, my doctor will see me soon after that and hopefully, I can start treatment. I will definitely keep you guys posted.
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