My Fibromyalgia Story (Part 1) - Vlogtober #11 | 2016
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- čas přidán 26. 07. 2024
- PLEASE READ ME!: Today's video is a little different. I knew it was something I wanted to share this month. I'd had this in the batch of pre-filmed videos in case I couldn't vlog. Yesterday I literally spent the whole day in bed grading student papers and discussion board posts and doing class prep. Not very vlog-worthy lol. I will try to vlog today to have another vlog for Day 12. This was difficult to film. Fibromyalgia is something I'm still struggling to talk about. I have a tendency to downplay a lot of my experiences (because who wants to listen to someone talk about how they're always in pain and feel like crap?) But not talking about it doesn't really help either. I was encouraged by another CZcamsr (Becca over at Saturn dazed74) to put up my story here. Since I had already been thinking about it the timing was perfect and it seemed like the gentle nudge I needed. So here we go. Thank you for your time. xx
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Instagram: jesuisjustemoi / jesuisjustemoi
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My blog: researchandramblings.blogspot....
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Random Fact: I don't have a fact today, but if you read this I'd love to hear your experience with fibro if you have it as well, and if you don't but have watched the video and read this box, I'd love if you would leave me some purple hearts 💜 (for fibro awareness) and unicorns 🦄 (because they're cool lol).
Disclaimer: All thoughts and opinions expressed on this channel are entirely my own. None of the products featured or mentioned are sponsored. Any links included are just to provide you with more info, they are not affiliate links.
"Pull yourself together, it's not that big of a deal..." YES. I told myself this so many times before I knew what was wrong. I felt so guilty for being sick and for literally not being able to get out of bed because of pain and exhaustion. The guilt is real. Now that I have a diagnosis, it's really a relief to know that I have a legitimate reason for these symptoms. I'm not being lazy or a hypochondriac.
This is seriously the weirdest disease in that it makes us feel like we're lazy hypochondriacs rather than actually sick. I'm glad you were finally able to get a diagnosis, I found that even though knowing what it was didn't change the way I felt, it did change the way I responded to my symptoms because I finally understood what is was. Thank you for watching and for commenting. I've done other videos on fibro and will be doing more in the future, hope you'll stick around. :)
😭 doctors told me to go back to work and push through
JeSuisJusteMoi this is exactly it! They makes us feel like lazy hypochondriacs. So so accurate
I do not currently have a diagnosis but i am feeling like this is wherr im at. I am.feeling like this. My test are seeming normal people twll me my pain should not be so bad but why do i feel like i need to cry
❤️ I have fibromyalgia too, and I’m so sad about others having it too. No one deserve to have pain everyday ❤️ Stay Strong and Thank you for sharing ❤️
Aww thank you so much for watching and for your comment. It's such a difficult condition to live with. I hope you have more good days than bad. 😊❤️
JeSuisJusteMoi Normally I have most of the better days. Have just had a week of high pain, but I can still laugh, smile and feel deeply grateful for my life.
I feel the same way. It's been a rough few days but I still have so much to be grateful for.
I know what you are going through, I have fibromyalgia and lupus, but my worst enemy is my family they do not understand and do not bother to learn about it.
It's really hard when you don't have that support system. I'm so sorry. Fibro and Lupus is a rough combination. Kind hugs.
Hello I have herbal medicine that will help you get rid of them naturally. Check my video for my information .
Amen, I understand you 100% , work is even worse. Family is like they Don t realize this is real read up and we are not lazy!! God Bless
@@sallyannmuniz4051 my family is very dismissive like very Dismissive
I had a friend, she was being treated for Lupus, told everyone she had lupus.....and went on disability for it.....come to find out, years later it was not lupus....she was misdiagnosed but certainly the pain is still there. Doctor wont commit to fibro, I told her to get another doctor.
I've been dealing with this for so long but was diagnosed oficially up to recently. The pain is most of the time unberable. I have depression and stress. The idea of suicide is constantly present in my head but I bury it thinking that there is a lot of of ppl in worse condition than me. I have no skills and the only job I can do is as cleaner or in a factory. My english is not good enough to work in a office or something else that is not phisically demanding. I can't concentrate even writing this is a strugle! My future seems pretty dark. Medication makes me feel drawsy all day as I am very sensitive to it. Sorry if my comment is to depressing. Glad I find your chanel and thank you for sharing your story.
Oh my darling, thank you for your comment, I just want to give you a giant (but gentle) hug. I totally understand the depression and stress. Comparing your condition to others is not helpful, you have every right to feel the way you do, but please know that it can get better and life is still worth living, suicide is not the answer. I don't know if you have access to mental health care where you live, but if it's possible to see a counselor or psychologist I would highly recommend that. The pain/depression loop is never ending if you don't address it. Since getting my mental health a bit more under control, and lessening the depression has helped a bit with my pain. I can understand the difficulties of side effects from medication, I wish we had better options. I also wish I had more advice or comfort I could offer you, but I'm always hear to listen. I'm glad you found my channel too. You can send me a private message any time.
Try magnesium chloride spray I promise you it will work please try it
Hang in their lady. Millions of people felt like giving up. Meeting more positive friends help too.
I live alone
Sorry for your pain I under I was just diagnosed myself hang in there I live with a heating pad and hot baths 😴 and work doesn't help but I have to
I appreciate you telling us your story. I have been dealing with pain and other symptoms for several years (we are in 2023, so it's been at least 12 years now) and I've never been believed by people around me. Why would a doctor believe me then?
So this year, I'm making myself a priority, especially since my symptoms got, not only worse, but also I have a larger variety of them now! My very young and very sweet doctor is checking for EVERYTHING and while checking physically for the pressure points, that's when Fibromyalgia came up.
I'm close to a diagnosis and I appreciate her willingness to check things out. She says it's a process of elimination and she didn't say Fibro was what made more sense, but I could tell that it's what she thinks.
I feel better knowing I'm not crazy. I will adjust and I will live with this.
Thank you for watching Anick! I hope hearing my story helped helped a little. I'm glad you have a doctor who's willing to check for everything, that's so important. Fibro really is a process of elimination, which is what makes it so frustrating to try to get a diagnosis, because you have to find a doctor willing to go through that process. You are definitely not crazy and you can absolutely live with this.
This was really well done, my dear! I am so glad you shared your experience for several reasons. One, it helps us get to know you better but also is a resource for anyone going through something similar!
Thanks Marie, I really appreciate the kind words and support. :) xx
I know a couple people who have been diagnosed with this and it's so hard to see them go through what they go through every single day. It's nice of you to share your story with us because it helps people to realize that you never know what someone else is is struggling with on a daily basis. Thanks for sharing
Thank you for watching Katie, I really appreciate it. It's not an easy illness to live with, especially if the case is more severe. I definitely think it's important to share for the reason you pointed out, the hardest part of having an invisible illness is that you don't always "look" sick. There needs to be more awareness for invisible chronic illnesses. Thank you for the support, I really appreciate it. :)
finally finished watching this video. thank you so much Andrea for sharing your story. Please definitely do more videos on this and your issues like anxiety and depression.
Thank you Shyma! I will definitely continue sharing my experiences with all of these issues. Now that I've been more open about all of this it will be easier to share things, especially in the vlogs. Thank you so much for watching! And for the kind words and support. :) xx
Omg you posted!!! I am at work right now so I can't watch the video, but as soon as I get home, this will be the first video I check out. You are so brave for posting this and thank you!!! I look forward to watching
+Saturn dazed74 (Saturndazed74) thank you for encouraging me!
You're welcome love
This was so informative! I love the way you explained everything so clearly. Sorry that you have to experience any sort of pain (physical or emotional). But thank you for sharing your story so that others can learn from you :) xxx
Thank you so much for watching! I really appreciate it. :) Just got today's vlog uploaded as well. And I'm sitting here with a giant cup of coffee after watching your vlog and seeing Thalia drink her Americano lol. xx
So sorry you have had to deal with this. I know very little about this illness so thank you for explaining it so well. Hope you are feeling better.
Thank you for taking the time to watch and comment, it means a lot to me. :) I was going ok today, but nights are usually hard, the usual pain I get in my shoulders and neck have decided to keep me company tonight again. One of the difficulties with fibro is even when you feel better it's only for a day or maybe even only a few hours. But you learn to cope. I'm done editing tomorrow's video so now I can lay back and relax and watch everyone else's videos from today, which always makes me feel better. :) xx
24 years now I’ve had this, and more. Mine has gotten worse over the years. Tried so many things, and really awful feeling horrible most the time. I pray for all of us and thank you for your video. Best to us all.
I'm so sorry for the pain you're in. This is a club none of us wants to belong to. Thanks for watching and soft hugs to you!
I am so so proud of you. Well done video. You have every right to voice your story with this no matter how severe. I can't do a restrictive diet either, they never work for me. The thing that really touched me the most of your video, was hearing that it does get better. We all have trials and errors with this issue, but just hearing those words open my eyes and heart up so much. I think that keeping that in the back of mind, will help me get through the bad days. Thank you so much for sharing 💜💜💜💜
Aww thank you so much Becca. I was so nervous to put this out there, but so far the response has been worth it. You were right about me sharing my story and I'm glad you encouraged me. :) Yeah, restrictive diets don't work for me, whenever I cut something out, it doesn't last long and then I binge. So I'm trying to just find a good balance. And it does get better. I mean, obviously everyone's case is different, but we definitely need to focus on the good days more than the bad. This illness can take a lot from me but I'll be damned if it takes away my hope that I can feel better/normal at least part of the time and that I can find a way to balance things so that I can minimize the bad days and get the most out of the good days. Thanks for watching! I'm definitely going to be more open and explicit about this in future videos. So again, thanks for the encouragement. :) xx
I'm so glad you shared this. my mom in law suffered from fibromyalgia and hers was super bad and painful. I think it's good to know for people who might get diagnosed with this & who hear your story and know that they have some hope that there is a possibility that theirs won't be as bad as what they might have heard since everyone is different. You are amazing! 👍🏼
Aww thank you so much Gee, your comment means a lot. I hope my video and ones like it on other channels will help some people. :)
They definitely will!
I'm so sorry that you've had to go through all of this! 🦄🦄🦄🦄🦄 But thank you so much for sharing, it can't have been easy 💜💜💜💜💜
Aww thank you so much for the hearts and unicorns. I'm smiling so much right now! It was a bit scary but already it's been worth it and the response from everyone has been so lovely and supportive. You all mean the world to me. Thank you! xx
Thanks so much for sharing. I suffer from this as well and can relate to so much of this.
I'm glad you addressed vlogtober as well. I'm so so excited about vlogmas but there's always that little voice that kinda says ' right...but what if you can't keep up'. But I'm just gonna get in there and get it done!
It's always comforting to hear someone else speak about it ❤️
I'm also going the no medication route but instead taking more natural measures. It helps for sure. 💜🦄
Shannon, I had no idea! Big hug. Definitely give Vlogmas a try. So far with Vlogtober I've found that having a few pre-filmed videos helps. Right now I've got part 1 of the Q&A, a beauty video, and a tag video ready to be edited if I need to take a break from vlogging. I had filmed this one Sunday after lunch because I knew I wasn't going to be able to vlog on Monday. Plus I know that everyone would be ok if I missed a day, so giving myself permission at the start to skip a day if I needed to was good.
We should trade notes on natural stuff. Are you taking any herbal supplements or vitamins? I've been taking several that I think are helping. And omg I swear the physical therapy makes a difference. Thanks for watching and commenting (and reading the description box 😉), I really appreciate your friendship and support. 💜 🦄
I feel like I can relate to you when you were saying that you felt weird about complaining about it because people have it worse than you. I deal with a lot of pain but not as bad as some people too. Thanks posting this video.
Aww I'm so glad you liked this video. Fibro is such a weird thing to deal with. But we all have our experiences and the right to feel bad or complain if we need to. :)
Thanks for this video. Recently I've been dealing with pain and awaiting test results/formal diagnosis for an autoimmune disease. What you said made me feel less alone. Despite the negative experiences, I've really been made more aware and empathetic to persons suffering from disorders and diseases, which is a good thing. Loving vlogtober :)
You are definitely NOT alone. And also remember that whatever the results say any pain or other issues you are dealing with are not in your head and you are not imagining it. I hope the doctors are able to confirm things for you, but even if your diagnosis gets delayed, remember that that's very common. Some things take a long time to officially diagnose. But there are so many different autoimmune diseases, it's so common to end up with one of them. Dealing with an invisible illness isn't easy, there's a lot of judgment when you don't "look" sick. But you're not alone and there are a lot of people who understand what you're going through. Big hug Samantha. So happy to have you as part of the family here and I'm thrilled that you're enjoying vlogtober. :) xx
Thank you for sharing your story. I'm still trying to figure out how to live with this disease. Your story gives me hope and let's me know I'm not alone. Thank you. 💜💜💜
There is definitely hope and you are definitely not alone. There are a lot of other fibro videos and a great community on here. And I've done a part two of this video talking more specifically about dealing with flares and will be doing a 3rd video soon on my experiences traveling to London and dealing with fibro. Big hug darling, feel free to message or comment any time if you have questions or need support. xx
I do not have a diagnosis, but it is one of the possibilities that I am thinking may fit. I have been reluctant to explore fibro only because my pain "isn't that bad". I have moderate wide spread pain that is annoying and limiting, but it isn't debilitating. I am usually able to "push through" and do whatever I need to do. As a single parent, I don't really have a choice. The fatigue is and digestive symptoms and brain fog have really been bigger problems. The problem comes with pushing through all week because I have no other choice is that come the weekend, I have pushed too hard and spend the whole weekend trying to recover. I am not fully convinced yet that fibro is the only thing going on, but it is a likely culprit in the mix.
I relate to this so much! I'm still not sure fibro is the only thing I'm dealing with, I think it's a mix of things. The label doesn't matter as much to me, but helps to have something to tell other people when they ask "what's wrong?" I also have moderate wide spread pain that I can push through (up to a point), but while I was a grad student, and now working full time with no one to take care of me financially, I don't have any other chose than to just deal with it. It's frustrating and you're not alone. Kind hugs and thank you for watching and sharing your story.
Thanks so much for sharing this! I've been dealing with fibro for several years now, I was officially diagnosed in 2011 and I'm now on Cymbalta and it doesn't really help a lot. I'm also on gabapentin, tramadol (which I only take on an as-needed basis). It's so difficult and my main symptoms are severe pain, stiffness where I feel like I'm the Tin Man, severe chronic fatigue, I also have extreme GI issues. I've been diagnosed with IBS and have recently learned that that is actually fibromyalgia of the gut. I also have gastroparesis and esophageal dysmotility and these too can really impact my life.
I'm definitely going to be sharing my story on my channel. I've mentioned my illness in my videos but you've inspired me to do a full video on my story and struggles. Fibro is really hard and they don't' know much about it and also there really aren't many good meds that help treat it. The Cymbalta makes me feel even sicker and soso more fatigued. I really hope you find relief. How do you deal with extreme fatigue?
It's sometimes so hard to get through just a normal day... Thanks so much for sharing your story!
Thank you for watching, I'm happy my story helps a little bit. Please do share your story on your channel! I have found the online community to be incredible in helping to feel less alone. I have IBS and that's no fun either. I never heard of Fibro of the gut though, I'll have to look that up.
Thank you so much for sharing! I have fibromyalgia as well. It’s alway helpful to hear other peoples diagnosis story and how it affects them.
Hearing other people's stories really helped me. Thanks for watching!
I just want to thank you for making this video. The part that ended up being most meaningful to me was toward the end when you explained that because you don't have it as bad as others, you've felt like you should be grateful and more or less keep it to yourself...because I tend to operate that way in general, I only recently started complaining about all my symptoms to my doctors, when in the past I would only go get seen or call into work when it was so bad that I just couldn't get through the day (of work) I'm 25 and I'm in the military...I'm healthy (otherwise) and I take care of myself...yet I've had a growing list of symptoms for a couple years, I'm tired/lethargic a LOT of the time and have been in steadily increasing pain. Because I put on a smile as often as I can and complain as little as I can manage, people assume I'm totally fine even when I'm definitely not. I'm now trying to accept that it's okay to not* be fine, and that talking about it is the only way people will really know.
With love and wishing you well
-T
Oh gosh, thank you so much for this lovely comment. I've had quite a few people tell me that's the part of the video that really got to them too, clearly I'm not alone in feeling that way. So you're seeing the doctor now? Have you been able to get an official diagnosis? Working with the doctors is so tricky because fibro symptoms can also be symptoms of other conditions and it's so important not to get misdiagnosed. It's definitely ok to not be "fine" and you should absolutely talk to other people, and try to find other doctors if your currents ones brush you off. Though, having grown up in the military I know that you sometimes are just stuck with the doctors you get lol. Thank you for watching and for commenting, I hope you'll stick around my channel, I try to do fibro videos every couple months, but there might be other content on here you enjoy. It's always nice to make new friends who understand the fibro/chronic pain experience. Big hug and hope your week is going well. :)
Thanks for your honest and heartfelt message. I’m much much older than you and I can get away with doing less than someone your age. Some days I hurt so badly I can’t get off my heating pads, because heat seems the only thing that helps me cope with the pain. I also have a terrible time with loud noises, tv, radio, loud people or barking dogs etc.
Thanks for watching. I agree with you about loud noises. Sometimes I can handle them but a lot of the time I can't.
Thank you for sharing your story! I don't suffer with fibromyalgia but it was interesting to hear about your experiences. I wish I had the courage to share my experiences with mental health - but I find it difficult as there is a huge stigma about putting your mental health out there on CZcams as people always say "everyone has it" but maybe one day I'll speak up because I know it could do some good perhaps. Xx hope you're doing good 😊
Thank you so much Tamzin. Talking about these things can be difficult and scary, and there's definitely stigma attached. I would totally support you sharing your experiences with mental health, but I understand not being ready. When I put up my video about anxiety/depression that was really scary for me, but it actually went pretty well. There's definitely people willing to listen when/if you're ready to share. Thank you for the kind words and support darling, I really appreciate it. xx
You have every right to talk about how fm affects you. Who has it worse is irrelevant to the suffering. Everyone's story is different. Ty for sharing.
Thank you, I appreciate your comment. :) Thanks for watching!
JeSuisJusteMoi yw hon
Thank you for posting! I need to post my story. Been struggling with this for 8 years now.
Please share your story as well. We need more people in the fibro community sharing their unique experiences. Thank you for watching!
@@AndreaJSeverson Thanks for responding. Working on key points for a video. Seem like my body has been in a constant flare. Hope all is well with you…💜💜💜
❤️ thank you for sharing your experience. I have fibromyalgia as well as CFS, hypermobililty spectrum disorder PCOS endometriosis anxiety and depression sleep apnea as well as all of the co morbidities. Every experience of any chronic illness is valid and people telling you that there is someone else who is a lot worse off than you do not make your situation any easier or your illness go away.
Thank you for this comment. It means a lot. Thanks for watching and sharing your experience as well. ☺️
i have carried a fibro dx for a long time...i chose to blow it off and just keep pushing. recently decided to look into it further as its taking me over. enjoyed your vlog.
Yeah, mine was easier to push through in the beginning. It's gotten worse as I have gotten older but I've also gotten better at managing it. Hope you find ways to manage it so it doesn't feel like it's taking you over. :)
I can live nomore with this ...my symptoms increase with any type of activity...and i don't want to lay on bed everytime...it started from age 19 and its 9 years completely...dere is no hope..just nowere...and no medicines are effective...its like a prison....i want relief 😭😭😭😭😭
Big hug. I hope you find relief eventually. I'm so sorry that you're struggling so much. Some people have such severe cases and I wish there was more we knew about this condition.
Thank you so much for sharing. I also love your videos! Just subbed to your channel 💕
Thank you for watching! :) Welcome to the channel. xx
I’m just finding this video. I’m 64 and developed fibro and chronic fatigue after getting Covid in April of 2020. I also developed long Covid but it has taken almost 2 yrs to get these diagnosis. It has been a nightmare to say the least. Your description has helped me understand so much.
Hi Jeanie, thanks for your comment. I'm sorry to hear you developed fibro after getting covid. Sadly I don't think you're the only one. I'm glad that you were at least able to get the fibro and long covid diagnosed so hopefully you can now learn how to best manage it for yourself.
I got covid in April,2020 and have had long covid since then. I developed getting sick from smells, such as perfume and cologne, i have brain fog almost always in varying degrees, i don't have pain all over my body, i have mainly a very dull achiness throughout my body, some pain sometimes. What were your symptoms that your doctor diasgnosed as Fibromyalgia and chronic fatigue?
OMG I live in AZ too! The extreme heat definitely exacerbates my symptoms. I have FM, ME, and depression with anxiety, among a few other things.
Clariza B the heat makes it so hard, I'm not ready for these temps 107 is too much. My depression is always worse in the summer because I'm trapped indoors all the time. Thanks for watching! Hope you'll stick around, I try to do these fibro chats every 6 weeks.
The heat makes me hurt really bad as well yes
That's fascinating because I know someone who has fibro and the heat really really helps them out
I know this is old and I don't even know if anyone will see this... but I have to say STOP EATING GLUTEN! I have MS so I don't eat gluten but when I get glutened I feel like I am getting the flu. My whole body hurts, like my joints but also like right under my skin, it feels like my whole body has one giant bruise and anywhere I push even a little is so tender. I just want to curl up under the covers in the fetal position until it goes away. And it does! Depending on how much gluten I got it takes a few hours to a whole day but it just dissappears. I know restrictive diets are hard but once you feel better and then test it and know that's what it is, there is literally no temptation because you know how shitty you are going to feel if you eat it. I would suggest cutting out all dairy and gluten (because their protein structures are so similar) for 3wks that's all it takes. Do it 100% no cheating for 3 wks and you will know if it helps.
I still see all these comments. Thanks for watching. :) I wish that advice had worked for me, I tried going gluten and dairy free for several weeks, I think I actually made it about 3 months, but it ended up making me worse. I started adding gluten and dairy back in and felt better. Totally weird. I think if someone has an actual allergy or intolerance it does help so it's worth trying for sure. For me, I've learned that having organic breads and diary, and avoiding overly processed products is what makes the difference more than cutting out ingredients entirely. So getting bread that's just the basic ingredients and how they made bread two hundred years ago without all the crap they put in it now. It costs more money to buy the better quality food but it's worth it for how I feel.
Thank you for sharing. I was diagnosed in 2004, but it took several yrs to get the diagnosis. I had been reading AZ was one of the better climates to live for Fibro? Now after hearing you mention the struggle with heat, not sure. The extremes in hear or cold really put me down. We were considering moving there to AZ to help my Fibro. The cold here in the mountains where I live has been unbearable for me this yr! I did much better coastal Carolinas. I too have take the no medication route. My case has definitely gotten much more severe these past couple of yrs. BTW- Don't minimize your pain only because someone else's is worse. Your pain matters too!
I was really lucky to have the doctor I did for so long, by the time I went to her thinking it might be fibro she was already thinking the same thing so I didn't have to fight her on it like a lot of people do. As for the heat, I would recommend visiting AZ in July/August to get a sense of what it's like when it's hot. Most of the time (except for August during monsoon season) it's really dry, so a lot of people are able to tolerate the heat, but for me it's just unbearable. I know for a lot of fibro people extreme cold is the worst, but like you said, extremes in either direction are hard for me. The problem with the heat is there's really not much you can do except stay in the air conditioning. If it's cold you can put on more clothes, an extra blanket, add a space heater to the central heating, etc to stay warm. But unless you have a lot of money to spend on electric, it's really hard to keep your home super cool. I'm a grad student on a fixed income so I can't afford to keep my place cooler than 76 degrees during the summer and I prefer 68 lol, so I'm struggling from about April-October. That being said, Tucson is a little bit cooler than Phoenix, and areas south of Tucson or North of Phoenix are even better, just don't go too far north into the mountains lol. It's nice to meet someone else who hasn't gone down the path of medication. Are you doing any alternative pain management or taking certain vitamins/supplements? I'm sorry your case has gotten more severe, and thank you for reminding me not to minimize my pain. I struggle with that when making these videos because I know people have it worse and I don't want anyone who watches these to think I'm not aware of that.
JeSuisJusteMoi I have tried a few natural supplements in the past, drinks and shakes and several diets and things thru the yrs. nothing helps my pain and I now have heart issues contributing to my pain and fatigue. Limiting sugar and wheat products helps a little with that swelling feeling. My bone pain is horrible, even when I bundle up in the winter, even if our internal home temp is warmer. My body just feels the rain and cold. I could probably write a book! I keep going and doing, but my body has completely shut down in the middle of a store on a few occasions recently in past months, which is a little scary. I still travel and do, but I'm much more limited than even 3 yrs ago, and it takes longer to recover from riding on a trip. I really can't push myself as much as I used to be able to do. Very frustrating. I have been wanting to see a natural homeopathic dr and get a full work up of vitamin deficiencies and such, a hair analysis too, but money is a factor. My finances are limited as well. Thanks for the reply!
It's such a vicious cycle of trying to find things that help. And I hate that seeing a homeopathic doctor and getting non-conventional treatments can be so expensive. I pay out of pocket for physical therapy so that we're not limited by my health insurance. It's helped so much but it's not cheap. :/ And I've found some supplements that help a bit but those aren't cheap either. Ugh.
Aww, that's a shame hun! Fibromyalgia is a tricky one to deal with, sure hope your managing well enough to feel good and happy :)
Some days are better than others, but today's an ok day so I'm focusing on that. :) Thank you for taking the time to watch.
Aww, your welcome hun...hope your having a super weekend!
Wonderful job sharing your story! It is not an easy thing to do. I wish I could send you a bit of a Michigan fall!!
💗❤️💗❤️💗❤️💗😘
Thank you soooooo much Leah! I'd love some Michigan fall. So glad I have your vlogs to watch. :) xx
JeSuisJusteMoi aw thanks girl! Xo
Does anyone suffer with the full body muscle spasms?? Severe pain and it can go on and on for hours, or just a few minutes...
I get the occasional muscle spasm but thankfully not full body and they only last a minute at most. I'm so sorry that you have to deal with that pain.
I know I have it cause my body hurts all over. Lots of muscular skeletal pain.
My job contributed to it. Repetitive movements for long hours.. They say environmental issues can cause it. For me it was the time when I was working 10-11:hours a day and overtime standing in one spot for hours. Not much movement. It was painful. My back tingled, my feet were burning, my thighs were burning , my nerves were tingling, sometimes my thighs felt like someone was placing a hot pan against my leg, other tome they go numb and feel cold to the touch.
The physical strain of my job definitely aggravates my condition. What you described sounds so relatable. I’m so sorry you deal with it too. Thank you for watching and sharing your experience.
Hi Andrea ,Hope you feel much better today,I just need to know something from you do you find since 2016 or before that you would become nausea's for no reason and have you ever felt like your legs are being cut by a laser or being stabbed with needles ?
I've definitely had the needle stabbing feeling. Thank you for watching! I am feeling a little better 6 years after diagnosis, I did an update video a couple of months ago if you want to hear more.
I hate the word "normal" too. There really is no such thing as "normal" and if there was, would any of us realistically fit into that category? I love that you shared this so much, you are such a positive, open, and inspiring being! I admire how kind and brave you are
Exactly! None of us would fit into that category! I think that's what makes me so sad and feel bad for everyone who's dealing with any kind of illness or difficulty or bad situation. We all try to fit into some impossible category of "normal" and so we isolate ourselves and don't talk about the things that seem not "normal". But if more people talked about their problems we'd start to see just how much "normal" really doesn't exist. One thing that age has taught me (lol, I sound like I'm 65 not 35) is that keeping things to yourself and pretending to be normal only hurts you and it doesn't do anyone else any favors either. Thank you soooooo much Tara! Your comment and kind words really mean the world to me. xx
Lol you do not sound 65! This has encouraged me to become a lot more open on my own channel. Thank you xo
Please do! If you're willing. I think it's important that those of us who are willing and able to share our experiences that we do so, because for all of us who are able there are dozens who can't. xo
in my case what is helping is a special tea that I did. You will need purify water, cinnamon, apple cider vinegar and a little bit of pink salt. Make a warm tea with it. Then a make another tea with 1 teaspoon of turmeric and a little bit of black pepper. This is like a miracle to me.
Thank you! I'll have to try these. :)
Thank you SO MUCH for this video! I have to see a Rheumatologist for fibromyalgia. I had no idea what it was and it turns out, I might have a really bad case and have had it for years. I was looking at videos and you really gave me hope that things are not as bad as they seem and the world is not over. The symptoms won't take over my life and there are things like physical therapy! And next time I can't get out of bed, I will watch one of your videos!
The world is definitely not over. You will figure out a way forward eventually, it just takes time to find the right management plan and which things help you maintain a quality of life. It took me a good few years to feel like I could start really living again.
Do you have flares? I feel so bad.
what do u do when in a flare ?
Thank you for your Fibro Video's. Iv been in blissful ignorance over these past few years regarding my Fibro DX until very recently. I also do suffer from other inflammatory diseases and could never really tell the difference between them and just felt my doctor just added Fibro as a "Cherry On The Cake" LOL. This past month iv actually really started to feel that maybe I do have it! For me personally it's the Mental health part that feels worse then the exhaustion, pain and stiffness. I wish I was mentally "Stronger" if you know what I mean. Again thank you for sharing your story 💜
Thanks for watching! The mental aspect of fibro is so important but one that's not talked about as much. I talk about this a little in my recent fibro update video. Thank you for your comment!
@@AndreaJSeverson I find for me it's the isolation and withdrawal. I make a conscious effort not to talk to much about my situation ( something I most likely need to learn to deal with) I hope your staying Pain free 💜 and I'm looking forward to more of your Fibro Video's.
I have this horrible condition as well I wouldn’t wish this on no one ever! Do you also get cold and have anxiety as well?
Thanks for watching. I'm sorry you are dealing with this condition as well. I do have anxiety, I had it long before I was diagnosed with the fibro, so it's not because of the fibro but they're definitely connected and impact each other. I don't get cold though, I have the opposite problem. I overheat really easily and get so hot. Living in the desert is hard because it's hot for 9 months of the year and the heat can make me feel so ill.
I was diagnosed in 2016 with fibromyalgia.. Mine was due to my sexual assault trauma when I was 14 my doctor told me. When I was told that my heart sank and cried to my doctor sat in the doctors for hours crying not because of my diagnoses but was emotional because I felt like my physical health was robbed from me ..
I'm so sorry Olivia, all of that sounds incredibly hard and adding fibro on top of it makes it even worse. Sending you so much love.
@@AndreaJSeverson thank you !!❤️
Thank you so much 💖
You are so welcome. Thanks for watching Sharon!
The worst experience I have had when my md.got at a lost with me sent me to a internal med dr and he put me on galapintin 200 four times a day it was not forme but then he took me off cold turkey and it was he'll for 2 months.. please don't give up and keep going till someone listens..prayers
Thank you for watching and sharing your experience. :)
Thank you for your video chat, so frustrating. I work in school with small children, by Wednesday I am EXHAUSTED, Thursday I m chronic, out on Friday, in bed Sat.& Sun. Wake up chronic, fatigued, repeat. I have exhausted my sick time and Dr. To More Dr. Diagnosed with Fibromyalgia & Raynauds, Osteoathritis. I m stiff after each day. Neurologist meds are HELPING! For sleep n rest; how am I to work?
Thanks for watching! Thanks for sharing your experience. Working is definitely a challenge. It's a very delicate balance to get the rest I need and still be able to do my job.
Hey lady. I've had fibromyalgia since 1996. My family are still puzzled. They have no friends with this situation. So I don't try to convince anyone I am sick but I look well.
Thank you for your comment and thanks for watching. I appreciate you sharing your experience.
Hello I have herbal medicine that will help you get rid of them naturally. Check my video for my information .
@@dromocure where is the link to video for herbs
I know how you feel because I feel the same way someday I have just about a month ago been diagnosed with fibromyalgia and my husband just does not understand at all how did you explain it to your other half
I'm single now, but at the time I was diagnosed it was really hard to explain it to my ex. They really have to be willing to learn about the condition.
do you flare with the change in seasons? i sure do!!!! i was dx'd after having a car accident and 10 surgeries in 5 years. i was in pain management at the time and thought all of this extra stuff was side effects of the meds. i went to the dr and told him about what i thought were side effects (and i was going to opt out of meds and just suffer through it) . he started poking me in the shoulders, elbow etc and said NOPE, not side effects, this is fibro. my ex husband never believed me but that is one reason that he is an ex lol
Yes, my fibro is definitely impacted seasonally. I live in Arizona and our summers are brutal. My fibro is always worse in the summer.
Suffering from pain.. I have tietze syndrome.. just got
diagnosed with fibro 10 days back...found your video.. thank you.. mine is back pain then chest pain left side.. do I need to say more how my anxiety hypes then
I totally relate to the anxiety when you get chest pain on the left side, that happens to me too.
I have it and I’m always in dang pain and I’m always fatigued as well. Also the nauseous as well did you have nauseous as well hun?
I have other stomach issues but not nausea usually.
I too have a thyroid condition and have recently been diagnosed with fibromyalgia I just put all my aches and pains down to my thyroid condition but when the blood test results for that kept coming back ok they tested for other things and my tests came back all normal, the dr said the only thing it can be is fibromyalgia. I wonder if there is a link with thyroid conditions and fibromyalgia. Thank you for your video 💖
I think there's so much they don't know about fibromyalgia, ME, women's hormones and thyroid stuff, that I have a feeling a lot of these things are linked in some way. I also don't think it's a coincidence that the majority of fibro sufferers are women and that in nearly every case their journey to diagnosis is long and difficult and usually ends with "I don't know what else it is so it must be fibro". That's exactly what happened to me. But I think my diagnosis was accurate because when I started making adjustments based on research I did on fibro, I was able to finally start seeing some relief. But who knows. I still get pushback from some doctors depending on which doctor I see. Thanks for watching, I hoped it helped. :)
my sister recently shrunk her multiple fibroids through herbal medicine by Dr Aluda on CZcams.such a wonderful man.
I was diagnosed 4 years ago. I'm still trying to figure life out with this invisible illness.
Learning how to live with an invisible illness is a long term process. It's been 6 years for me and I'm still figuring things out. Thanks for watching!
my sister recently shrunk her multiple fibroids through herbal medicine by Dr Aluda on CZcams.such a wonderful man.
I'm so confused as I also have fibromyalgia, my inflammation markers are never up.. but it's a well known fact that fibromyalgia does not cause inflammation.
I don't remember exactly what my doctor was looking at, I think she just assumed that the inflammation markers showed my body had been dealing with something over a long period of time. But fibro is different for everyone and everyone's symptoms present differently. In all the comments I've gotten on all my fibro videos, no two people's experiences have ever perfectly matched. Since there's no blood test that can confirm fribo, it could also be that instead of one condition, it's different variations of related conditions that all get lumped together. I don't make these videos to try to categorically explain fibromyalgia, it's just my own personal experience. Hope that helps lessen the confusion. :)
My blood test dont show up immflamation. My fibro is bad so I take tramadol and gabapentin. I take up to 2,970 tablets a year. I have neuralgia and sciatica to go with it plus cfs as well.
Oh my goodness, I'm so sorry your case is so bad and that you have so many additional conditions. I've been on gabapentin before, I had really bad side effects which is what makes me nervous to try other meds. :( Thank you for watching. It's been nice hearing from other people going through fibro. Big hug. xx
It get worse too. I wonder how you feel these days since it's been 4yrs ago
I think it's gotten a little worse but I've also gotten better at managing it, so in 4 years, it feels like it impacts my life about the same. It's definitely a delicate balance to stay in a good place and feel like I can live my life.
I'm 61, and have suffered from what is being called "fibromyalgia" for over 30 years. I'm still up in the air whether "fibromyagia" is what they think it is, or whether there is another illness that is being diagnosed as fibromyalgia. I would like to ask you a few questions. Is your pain over your entire body? Does it really hurt when you are touched? Is it really affecting your joints (Doctors may be trying to convince you that you have trigger points, when it may actually be overactive nerves affecting your entire body.) What meds are you taking? Does it get rid of your fibro pain completely? Have you ever experienced "air hunger" where you were gasping for air? I hope you find the time to answer my questions. It is very important to me. I hope you feel better. (If you reply, I may have other questions for you.)
Fibromyalgia is a very tricky condition to diagnose accurately, since it's really just a process of eliminating anything else. Also, it seems to exist on a spectrum, so my case isn't as bad as others I know. I get pain all over my body, but thankfully it's rarely all at once. When it's really bad, there are trigger points in my body that do hurt if someone just touches me lightly, it's as if they're pressing on a bruise. But more often I tend to have pain in my joints than the typical trigger points. My shoulders, hips, wrists, and knees are the worst but I also get pain in my ankles and fingers/knuckles. I'm not on any medications, as the common side effects of the standard meds prescribed for fibro are things I don't need, particularly weight gain. For the most part I'm able to still do things on a daily basis and I'm not bed bound from my pain, so I just deal with the pain without any medication. I do however take supplements like fish oil and magnesium to help with my joints and inflammation. The "air hunger" is a new symptom, I haven't heard of that in relation to fibro. The only time I've experienced serious air hunger is when I'm doing a very intense workout, like when I used to go hiking, but on a regular basis it's not something I've dealt with. Although I do sometimes find I have to take a deep breath, like I've been breathing shallowly for several minutes without realizing it, but I wouldn't describe it as gasping for air. I hope my answers help you, but as I said before, everyone's case is different, so it's hard to compare symptoms too much. I hope you are having a good week and your pain isn't too terrible at the moment.
Can you share what you have been taking, and its effectiveness?
I HATE THOSE WORDS " IT COULD BE WORSE" that was what my ex would say when i asked for a hug on a really bad day. i was going thru multiple orthopedic surgeries plus fibro and he would say that to me soooo often
Every time someone says "it could be worse" I always want to tell them, "yeah, but it could be better." It really is annoying.
I have found my family forgets I have it, they forget as I look fine. I cover pain up perfectly, and when I drop out during flares, I dont complain, I just tell them I am feeling painful. I am depressed, as I get no consideration when the "senior moments tage" is used on me, as I have had this for 15 years. Along with degernative disc disease, arthritis, it is an ongoing struggle one which no one understands. Getting vaccines for covid? I find vaccines make me sick, but yet, so would covid....my flares would probably last forever ...so i have been wearing masks, shopping online, cut off my associations, and stay in quarantine for the most part. Quilting helps me though...to get out of my head and daily park walks....when I spent thousands on healthy toy poodles from long term competition lines, just so they would keep me going every day, keep me active...as they are my only joy.....I was scolded, shamed I hadnt rescued a dog (impossible to find them where I live) and I am allergic to all of them except the poodle family. My heart goes out to all who have this problem of fibro, as we struggle with year after year pain, brain fog, fatigue, diet restrictions, and never ending labeling of "hypochondriac" and covid vaccines or not is a pain sentence for us either way. No one understands.
Oh wow, I totally relate. The vaccines knock me flat for a couple days and feel like a mild flare, but I know that covid itself would be a million times worse. I'm also still wearing masks, shopping online, going out as little as possible, etc. I have to go teach in the classroom for work but I avoid going out, or at least doing anything indoors in public. I'll do coffee dates with friends on a patio but not indoors. Which is hard living in Arizona where it's so hot for most of the year and we can't do patio stuff for several months at a time. Thanks for watching and sharing your experience Debra, I totally understand what you're talking about.
hello fellow fibro warrior :) just subscribed! xoxo Liddy
Hi! Thank you so much and welcome! I subbed back, always nice to find other fibro people on here. :) xx
Does fibro also cause heart palps as well hun
I haven't had any heart issues, thankfully, but I'm always on guard and paying attention for that sort of thing. Thanks for watching. :)
Nice video like
Thank you so much!
They try to tell Us that its all in the head ! But for all the unbeliever the pain real with fibromyaligia 😭
Thank you for watching. :)
Hey girl! Do you have a fibro update?
I see you found a bit of an update in Vlog 107. I'll probably be doing another update in a future vlog. It's been awhile since I've done a proper fibro update video. Thanks for watching!
😊
Thanks for watching June!
Wow I feel like you talking right to me.... wondering how you are doing now.
I'm going better in some ways and worse in others. I recently filmed a fibro update, kind of reflecting on how I am 6 years after diagnosis if you want to check that out to hear more.
There are theories about trauma or some event which triggers the fibro. I guess it's something worth considering especially as blood tests don't seem to show anything. Of course, they may not have a blood test as yet to determine the cause. Or, maybe they aren't reading the blood test results correctly. i.e. seeing a number which is within the so called normal range but which is actually low. For eg my GP says my ferritin level is within normal range (it's 20) and the range is between 18-180. To me 20 is pretty low! And maybe a healthy range for me is 70 not 20. My symptoms fit low iron (pain, fatigue, low mood etc) and the results suggest I have low iron. I don't know, it's all a bit of a guessing game really as doctors are as much use as a chocolate teapot... 🙄
Yeah, I've heard that theory, it makes sense in my case. In 2013 I had three severe sinus infections in 4 months and was on multiple courses of antibiotics. It really messed me up. I felt like I got better but over the course of the rest of 2013-2015 it was a gradual decline until I finally got diagnosed. Thankfully at the time I had a really good doctor who didn't just judge my blood tests by what "normal" was, so she put me on thyroid medication when most doctors probably wouldn't and we kept tweaking other things based on what the blood tests showed and how I felt/reacted. My iron has been low before, but I never notice a difference, taking iron or not. And yes, doctors often aren't very helpful. I loved my old one, but I switched insurances and had to switch to a new one, who is definitely as useful as a chocolate teapot. Thanks for watching!
I can't find her channel
I might have mistyped her name. Here's the link to her channel. czcams.com/channels/pRm77T8Ml-SUPgjbKa61EQ.html
Hello!!
Thanks for watching Susie!
Oh, and low iron can affect the thyroid.
Im sorry you were diagnosed with that must be tough especially with the pains in the muscles an joint stiffness. I have a few of those but I have osteoperosis but im taking supplements to help it an catch it a bit early found out when I was 30 so I have a hard time losing weight even going on walks my bones hurt like hell.
+BalkanPrinc3ss it's not easy. I know what you mean about having trouble losing weight. I know it would help me but it's so difficult to workout, especially at higher intensities. Big hug darling, osteoporosis sounds miserable too. Thanks for watching. ❤️
Fibromyalgia is not an inflammatory disorder so why we take anti inflammatory diet ???
I don’t think I said it was an inflammatory disorder, if I implied that I’m sorry for the confusion. I was only sharing what I’m doctors had told me at the time. But I do deal with inflammation and have other conditions that overlap so being mindful of inflammation is important for me.
Heat is like a furnace, under 80 I m FREEZING, lol 😆 😂
Oh wow, I'm the total opposite!
The reason I can t be in any cold environment because I have Raynaud mhm, I had to look it up and educate myself , thank God in the beginning of my diagnoses I was scared, but now I take it as an excuse to dress cute as in the 50's I add fancy gloves to match a hat that match my hat lol. Real reason protecti g myself from the Sun ( eyes) hat when I enter a place with A.C . Lol. Is frustrating at night, hot cold ggrr. I ll soon discover the secret to thos promblem lol. GOD BLESS US ALL. 🙌 😊
You should try magnesium spray woman tend to have low magnesium than men. It sounds like a magnesium deficiency you should look into it.
I've taken magnesium supplements for years. They definitely help, but they don't cure Fibromyalgia. Thanks for watching!
@@AndreaJSeverson interesting you should see a doctor and see your vitamin levels and see which ones are low
The only thing that is weird to me is the US healthcare system! 😳
Very true words! The US "healthcare" system is definitely weird.
Nice VLOG hon.
Thanks for watching :)
I tried cymbalta. It worked but it made me hungry all the time and gain weight. So I stopped ✋ it.
There's a couple meds I researched when I was first diagnosed and weight gain was a very common side effect, it definitely made me think twice about going on any meds for fibro. Thanks for watching!
@@AndreaJSeverson yeah. I was thinking the same thing. I will just work on managing it.
I'm just glad there's someone that's listening to me.
🙏🏻💚💚💚🙏🏻
Thanks for watching!
Wow! My story is so similar, the list for the doctors etc..
Blood tests normal.
My private doctor said the same as you. My public doctor, doesn't believe me❤
I feel like it is more, kmowing what it is, the not knowing seems to be the worst.
I'm from the UK, but I live in Spain, the heat for me is the worst, I really get you❤
Yes, the feeling of going crazy, I know what I have got although I haven't had a confirmed diagnosis.
I really feel you, I am functioning, I work from home a teacher....thank you again, you are the person I have felt most aligned with.
Yes, I have seen people with much more severe cases.
It is refreshing, thank you, so much❤
The heat is so hard! Living in southern Arizona is not easy with fibro. Thanks for watching. I'm glad these videos have helped in some way.
My flares are getting super difficult.
I'm so sorry you struggle with this. Thank you for watching. :)
@@AndreaJSeverson Hi Andrea, thank you sweetie
about 5 days out of 7 I'm in a bad flare
I'm so sorry, that sounds horrible. Do you watch Becca on her channel Saturndazed74? Her fibro is more severe than mine is, so she talks about some of the stuff that I don't have experience with.
I have fibromyalgia
I'm so sorry. It's such a tough condition. Thank you for watching. :)
Found the fibromyalgia vid ;)
Yay! Glad you found it. I also did a second video specifically on flares sometime in November. I'll be doing more fibro videos after the new year. :)
I've never heard of her
You should come move to New England lol
I would love to! If I don't move to the UK I think I will end up in the New England area.
♥️💜❤️💙🇺🇸
Thanks for watching! :)
Can getting beatings as a teen trigger this condition?
I have no idea if the research backs that up, but it does seem like physical trauma can be a trigger.
I agree with you about meds. I've had so many bad experiences with meds that I'd rather not take anything more than LDN. And you're right you do get used to the pain where if one stays busy it's just at the edge of consciousness. It's when I'm sitting or trying to sleep that my pain is worse. Diet change and movement helps me too. Thanks for sharing your fibro story. Gentle hugs from one fibro warrior to another.
I have yet to post any videos, but I have begun blogging about chronic illness and dealing with it in a positive way. It has been very therapeutic. Check it out if you get a chance. TheDizzyOptimist.wordpress.com. Again thank you for sharing. 💕
I've had problems with side effects to meds so I'm very wary of going on any fibro meds. So far I'm managing to avoid them. And yes, when I'm trying to relax or sleep and not distracted by other activities that's when the pain is the worst. I'm looking forward to reading your blog! Thanks for the link. :)
Cool video!! We like your channel! LIKE # 8!! Come visit us:) Thanks.
Thanks for watching!
I saw another lady with fibromyalogy use Voxxlife socks and insoles and was amazed at her results
Wow, I'll have to look those up! Thanks for sharing.