My therapist wants me to ask my doctor about it and I’m nervous because of all the gaslighting I’ve experienced about my pain over the past 6 years. It breaks my heart you live in Sweden and I live in America and this was posted 6 years ago and people’s pain is still not being taken seriously. Thank you for sharing because i feel less alone and what you said about starting to think you’re making it up and causing it yourself is so relatable and I’m so sorry we both ended up thinking this way when it is not our fault and they should be helping us and believing us.
Thank you so much for making this video. I cried as I'm so sad, but relieved that I'm not alone. I hate the thought that so many people are experiencing this. I believe I've had this since childhood. Just everything makes sense now. I'm 27 now and can finally name what is actually wrong with me. I no longer have to question my sanity. Much love and heres to better days❤️
Thank you for sharing this, I have recently been through exactly the same thing and it's so heartbreaking when the doctors don't take you seriously. I also understand how you feel about being young and not being able to do what you want to do (I'm 18). Thank you for being brave enough to share your experience, this has helped me so much. x
It took me 10 years to get diagnosed I've had it for 17 and I'm 39 but looking back even in childhood I had minor symptoms...over the years I have developed more and more.symptoms. It hasn't been proven but I feel like it is progressive. Good luck and stay #fibrostrong
wow I was crying throughout the whole video. I'm experiencing the same thing as you are but I have done all kinds of blood tests but the doctors can't find anything. I haven't been able to go to school for almost 2 months and It's really hard not knowing what's wrong with you when you feels so bad. Thank you, this video really helped. Thank you
That dr who told you to just 'live w/ it', I had the same thing happen to me. Yrs ago, back in my late 20s (I'm 44 now), one dr got right up in my face, said "young lady, you need to just go home, get a husband, & get on w/ your life". I was defeated. Needless to say, I think the combination of a lack of diagnostics, coupled w/ the typical way women are treated, makes for a real nightmare for us when we have to deal w/ chronic illness & the medical community. In my opinion, the medical industry is mostly garbage
Thank you so much for sharing your story! It has helped me understand better! I literally just had tons of blood work and all came back normal! I am so depressed and hopeless my neurologist has no empathy, I saw him today to go over my results and he was pretty much like you’re a hypochondriac! I have never felt so humiliated! I’m done going to doctors. I thank you from my heart!! 🙏🏽❤️ big hug! God bless you! 🙏🏽
You have expressed so much of how I feel. I'm in the process of being diagnosed. My rheumatologist is pretty confident that it is fibromyalgia. The guilt of feeling like I've been lazy and made up the sickness in my head. Oh my gosh. I'm not the only one who blamed themselves! Your honesty and vulnerability is so comforting. Our loved ones can't understand pain, thank goodness, but we all have each other to know. I hope you share more about this soon. I'm 24 and have been having a hard time since graduating Uni, finding a career I feel like I can do daily. I've felt like a failure I this aspect. Can you relate?
Sweety you need to talk about it People especially your family need to know what you go threw and how it affects you . My first husband divorced me cos of my illness And he took all my 5 children away . So sad 😞 I Some people are so evil instead of helping .. They give you more stress I’ve had fybromyalgia since 2004 ..but talk about it ... I’m a fybromyalgia warrior And all those that have it Are fybromyalgia warriors . And you can be too ok Stay positive .............. People that don’t have it just judge you .. O you look fine to me .. Ignore them .... Only you know the pain you suffer . And everything else . That goes with fybromyalgia . Lot of tender hugs 🤗 .
Thank you so much for your courage and sharing your story. I was diagnosed with FM early this year and totally feel you. My story is a little different because I'm a man. Doctors have looked at me as if I was crazy for many years and I was told that there's no possibility that I could have FM. Stories such as yours confirms the fact. It's kinda sad that we rely on professionals for help, unfortunately it's all about money. Remember you are not alone and there are many that share your story.. Relief is coming soon now that we know. Much love to you and stay strong.
I'm sorry that you have to go through this, not just the illness itself but the feeling of isolation that seems to come along with it. It's so awful that the doctors let you down. It's sad that you can't talk to the people around you about this, I hope you find more support online, and do drop me a message if you need to vent. I wish you the best of luck for the future.
Thank you so much for the kind comment Alice! I am actually more confident that things can get better from here, since I finally have the diagnose. Thank you so much for being so supportive and gorgeous all the time!
I suffered with this for about 4 years before I was told what I possibly had. It broke me down to nearly nothing. Mentally I can't function anymore. Everyday jus getting out of bed is a task in itself. Thank you so much for your video. I feel this same thing everyday of my life.
+melissa neal I am so sorry you have to go through this! If it's any consolation, you are not alone, and through certain methods of help your life can get better. You are so strong for going through what you go through every single day of your life and I understand the feeling of not being able to get out of bed. I feel that way a lot of the time as well. But don't give up! Take things slowly, and know that life will get better eventually. If you ever need to talk, feel free to hit me up!
You are so beautiful and so strong! I really hope the best for you, and that opening yourself up to others can help you help others and also find people that have a similar problem. You're so inspirational! rooting for you xx
You are so brave to talk about your journey ! I am 24 and have been dealing with Fibromyalgia for more than 10 years and it has been a horrible journey. It took doctors about 5 years to diagnose me and trying to still cope with is is very hard. Specially the part where you say you can’t really explain it to everyone around you... and having to deal with this silent pain and trying to put a strong face everyday. 😭 Thank you for the video, it made me feel understood and not alone in this journey.
Jofelisious...Your an inspiration to so many women and men by sharing your experience about this painful life changing disease. I've had fibromyalgia for 23 years.
I really appreciate this video. Thank you for being vulnerable to us. I was just diagnosed with fibromyalgia today. I am confused. It seems like the onset of this was a traumatic injury from a fall off a horse. It’s been over a year and a half from the fall, but I have neuropathic pain in many places in my body and I have to be treated with medication. I appreciate you sharing your journey, for it is helping me to start mine❤
I can relate to this so much. I’m having a awful day and just need someone who understands to talk to so this video really cheered me up in ways. Thank you for making this video. X
I want to applaud you for your courage to be proactive on this situation. I am a massage therapist and I have several clients that have been diagnosed with FM or CFS, but I take all cases seriously. I encourage you to look into nutritional support with physical, mental, and spiritual activities to help you overcome this. Be aware of any drugs prescribed to you and go ahead... research it! You are doing the right thing!!
Thank you for your story, and yes more people will start to understand as more people start to tell theirs too. I was diagnosed in 2008 with Fibro., went thru most of the things you have gone thru and still do today. I have spent all these years trying to figure out how to feel better. Everyone with fibro has their own issues and ways they deal with it, but this has been my experience. As bad as I hate to say this the doctors were right about getting used to some pain. I went thru several stages of grieving who I used to be, then I tried to fix it. After all these years I learned I could not fix it and make it go away and get my old life back. I learned how to manage my pain and symptoms and learned to have a different life (a new normal). I feel pain every day but have learned to ignore it on good days. On the bad days you take it easy, and you have to get rid of the guilt that comes along with it. One of the most important things you will learn is not to over do it when you are feeling good, take it slow and your good days last a lot longer. Don't try to work long days without a break. I work a few hours and take a short break to rest and I don't hurt as bad. I take pain meds, but only at night because that's when its worst for me. And Ibuprofen during the day. Forgot to mention I also have Lupus which sometimes accompanies Fibro. The best thing you can do is start paying attention to what causes flare ups, and learning how much you can to without putting yourself into a flare up. And you are right about other people not understanding, only the people that see you go thru it will understand, but not always. With Fibro you have to stop trying to get people to understand and do what you need to do to feel better, or your will stay depressed. True friends and family will understand and stand by you thru this, the rest you shouldn't worry about. Its hard to lose friends but you become much closer with the ones who really care. I still have a life, its just not the life I had before and that's ok, I have come to peace with it. Good luck in finding your new future, and don't give up, you just learn to be thankful for your Good days, and not stress about the bad one.
I am so glad you made this video. I have suffered from fibro for many years. It took a very long time to get diagnosed. I also search youtube for videos about fibro, and there are not many out there. I also feel alone. I have a hard time explaining to others what is wrong, and feel guilty about missing going out with my friends. My rheumatologist is wonderful, but I have found to not even mention it to other doctors. For you are believed to just have depression. My pain started in my chest. I have tried many meds and alternative medicine. Praying healing comes for you soon. Don't give up. You are not alone and there is hope!
I am sad to hear that you feel like you cannot discuss this with your other doctors. Just know that even though you can feel lonely sometimes, you are not alone. There are plenty of us out here and I think that anyone who share this experience would be willing to be there for support and talk about it! I hope you can soon find a treatment that makes your life feel happier and better, you deserve it! Thank you so much for watching and commenting.
I've had fibromyalgia for the past 13 yrs and still find people who don't believe or understand what it's like and how it affects me. I felt like I wanted to hug you when you're talking about this. I hope that your symptoms have been manageable and you've been able to cope with the pain it causes. there are support groups online through social media and also newsletters you can sign up to via e-mail.. Sending hugs, keep smiling and know that there are lots of us here if you need us xxx
thanks for sharing. its been about three years for me with similar symptoms and i completely understand not being taken seriously or being able to get a diagnosis.
Hi sweetie. I have Fibromyalgia for 12 years. I was diagnosed only after 5 years of having severe pain. Anyway...long story short...u need to be positive. And when u have a flair up...u need to get up, get dressed,get moving. It's unfortunately a very difficult thing to deal with because lots of family and friend tend to think u are nuts. But we know better....chin up Fibro fam.
Your story is so inspirational. You are inspirational. The fact that you live with pain daily and put on a brave face and face the world, facing "experts" who told you it's nothing, and still standing firm - I hope your message of hope reaches so many cause it did create awareness for me I had no clue about this!! I'm sorry to hear you have it and that there is no cure but I know you'll never loose hope - you seem so strong. I sincerely hope your life is amazing and you see so many good and happy days and moments hun. THANK YOU for sharing 😘😘
THANK YOU for watching and taking time to send me such a sweet, thoughtful and caring comment. It really gave me a lot of strenght and happiness to read this and I couldn't be more thankful.
thanks for sharing your story! hugs! I know there's millions of us that have fibromyalgia, but sometimes I feel alone... its so good for me to find / hear other fibro ppls stories on here!
I like finding videos where people talk about their experiences as well, because as you said, it's less lonely. Just know that you are not alone and we can be there for each other!
Sorry that you have to go through this, it must have been really scary. It takes courage to share personal experiences and struggles. Sometimes we get body aches without realising it could be something serious. This video is very useful and helps bring awareness to Fibromyalgia.
Thank you soo much for opening up about fibro! We need more awareness for invisible chronic illnesses. I have fibro too and watching this video made me not feel alone and it was very relatable. There are so many people think we're faking it, even doctors. Which is a sad thing. I hope they will do more scientific research for fibro! You did an amazing job with this video 💜
Omg thank you so much for finding me! I need more friends who go through the same thing. Saw that you had added me up on twitter so I added you back. :) I really agree with you that they should do more scientific research on it. So many people suffer from this and they do it a bit too silently I feel! Thank you for leaving such a nice comment!
+Joffelicious you're welcome sweetie ❤️ I agree, talking with people who go through the same thing is so much easier cause they'll understand. Thanks for following back on Twitter, feel free to message me 😄 Sadly enough to many people are ashamed of this illness so I'm really happy to see someone talking about this topic, it's not our fault, we didn't choose to be sick!
You are an amazing woman! I give you so much credit for talking about it and probably helping others. I look up to you and think you are fantastic!!!!!!!
Thank you so much for sharing yourself and being vulnerable. You look great like I do, (so I always hear, though cannot hide my fatigue) yet we both suffer inside with pain. I was diagnosed today so it has been a tough one, but have been struggling from this for many years, without a diagnosis. I can relate to ongoing pain, fatigue, lack of sleep, and being blamed for this, though the people that do the blaming are the people that do not suffer from this. I truly feel for you. Keep sharing please and thank you.Hugs! xx ;)
I appreciate your video and for being brave and sharing this because most people don't understand this illness. Like you, my mother has been diagnosed with Fibromyalgia for years. I know that I have it, but I'm in the process of getting diagnosed. I reached a place now that it is becoming debilitating. I feel awful everyday. I really don't have good days anymore.
My mum has recently been diagnosed with this, it was a diagnosis that took around 6 months to get. Just after Christmas 2015 my mum was taken off her feet. The doctors at first said there was nothing wrong then they said it was my mums iron levels then they said it could be MS then a brain tumour and then fibroids and then finally fibromyalgia. I hate seeing my mum in constant pain and I love to watch these videos cause I feel like my mum isn't alone ❤️ keep strong 💪🏼
When i saw your video and almost cried.I too have FM and have had it for many many years and my dr's also told me it was all in my head etc. I would like to keep in touch and encourage each other. I suggest you find and read a book called Osler's Web by Hillary Johnson. She did the research on CFS and some dr's think both diseases are the same as I think as well. This book tells how it began and how horrible it was. Please hang in there and keep looking for help and don't get discouraged. Also watch out for false help remedies who just want your money.
Thank u for your video. I believe I have had it since i was 27, however never diagnosed at age 66. I didnt know about fibromyalgia until diagnosed and then googled it. Great to hear from someone who shares the same symptoms. Thanks
I have a friend who went through a similar experience with doctors in Sweden (with them not wanting to help her/not believing her) -- You are very brave for speaking about it on UA-cam!! Just know that in the future, I hope you never feel pressured to keep your symptoms and your feelings a secret! Likewise, I hope you never feel pressured to share more than you're comfortable. I'm rooting for you
Really?? I really do feel that the medical care here needs to improve. Why would you even go to the doctor and pay money if you weren't in need of help. So stupid. Also, there are studies here that show that women get treated differently by doctors even though we're supposed to be one of the most equal countries on earth. Step it up sweden!! Thank you so much for your encouraging comment. You are a wonderful youtube friend!!
I just started crying listening to your frustration of people telling you it's all in your head. This has been me for 20 years. I get so sick I go and plead with a dr who does the same blood work and tells me I'm fine. For years I thought if I just loose weight if I just work out if I can just sleep longer I'll feel better. There's nothing wrong with me. Just go to work. Just keep moving. I've had and still have thoughts of suicide because the pain is so awful and everyone just treats me like I'm lazy and avoiding work. I can't find a dr that takes me seriously. I hate life.
Having this sucks so bad. No one will not understand the pain, fatigue, morning stiffness, ibs, rashes, muscle spasm, sensitive to sun, certain food. nausea, chest pain etc. im still learning about mines. i have it now most a yr. People would tell me its all my head. its real. i really dont have a social life. It feel like you have the flu everyday.
Do you ever have body parts swell up ? My tongue feet and hands tend to swell especially after hot tubs or hot showers. But sauna doesn't do it it just makes feel irritated.
Thanks for sharing. It is silly to say but it is nice to be able to relate to others. I've spent my whole life having people look at me strange because of how I felt. It sucks but I am learning and living more than ever now. Keep Your Shine up
When you’re voice started getting shaky I got tears in my eyes. I’m going through the process of figuring out what is wrong with me I’m almost positive it is fibromyalgia I’m in so much pain everyday and I just want you to know I know how you feel and I feel your pain. Hope you get through this 💜
Thanks for sharing your story! I developed mine about 6-7 years back. I was in my mid twenties and I'm 31 now. It's nerve wracking, disappointing, frustrating, and you really can't control your life because it's so life altering. Covid doesn't help. I discovered I was a highly sensitive person (HSP) about three years back, so that explained my stuff..I'd had too much early life stress. My mom divorced dad for cheating and then my dad died soon after (two adverse childhood experiences (ACE's) score there. Then we moved 6x in 10 years, between ages 2 and 12, which meant a new house, new shcool, new neighbourhood. I was bullied a lot... these two arne't on the score sheet, but they should be as they impact healthy development. My mother was an adult child of an alcoholic father, so she was emotioanlly immature....
I am sorry for my late reply, but thank you so much for your kind comment! If you have tips I would love to hear them! Considering all of the comments I've been getting on this video, I am sure many more people would also find them helpful :)
You seem so lovely! I hope you get some relief soon. I'm also in the pain cycle process and have T1 diabetes so I understand the chronic conditions. I also think I may have FM so I too like you came online to learn about it. Great video
Ah yes, if all doctors could be like Dr House! That would be awesome. Thing is, he'd want to do a lumbar puncture as that seems to happen in every episode, and they look painful 🙈😊
Aww :"c this made me so sad and so happy. I remember you telling me about your struggles with your pain and the stupid doctors and how helpless i felt. You have been so brave through all of this and i'm so happy you finally have been diagnosed! It must have been a nightmare trying to explain when no one understands. I do think i realized how tough it was for you but i of course could never really know what it felt like. I do hope that i never pushed you to anything during your more painful episodes :C I think you did an amazing job doing this video. I would never been able to. Keep fighting and if you ever feel like talking about it I will always be here for you. No matter when my ears (well eyes and fingers since i dont really meet you irl XD) are always to your service :3
FINA DU!!!! jag kan lova dig att du aldrig gjort eller sagt något som pressade mig eller så. Du är ju en av de få som jag faktiskt pratat med om det och så. Tack för att jag har dig! :)
I was diagnosed with fibromyalgia after being undiagnosed for 4 years: it started when I was 14, I'm 18 now. I suffer from basically every symptom except digestive/abdominal ones. I had friends and teachers disregarding my pain because I had no name therefore they didn't believe me, doctors misdiagnosed what was happening to my body and told me what was happening was normal. I thought I would be happy about finding a name for what is going on with me, but honestly I just feel so helpless for it...
I know it's tough and even when you feel alone your not. The thing about Fibro you have to learn to manage the pain as part of your new life. It takes time but there are many resources online and youtube that can help you. I know that in no way this is going to be easy but remember take it one day at a time. It will be okay.
Holy S**T!!! 'Twas like you were channeling my exact story. Lol, getting out of bed in the morning... I developed techniques that would make Russian Gymnasts envious. If I had two to four hours to try and relax every part of my body, I'd start to get mobile. The worst days involved almost not moving at all and inability to think straight. Yes, the "guilt". Am I just lazy? Am I irresponsible? Do I not have discipline and strong enough will? I tell you, most folk with this have amazing power of will. I plodded through two decades of 60 hour work weeks and nearly became suicidal because I knew in my heart I couldn't keep it up. Your own pain is inexplicable to anyone else. It's invisible as well. I'm 47, just diagnosed, and will begin the journey to alleviate my symptoms. My own methods and "folk" techniques are evidently on point, and now shall be refined. Lol, here's a quick list of my self-developed techniques: Lying upside down on the stairs, Lying on the floor and relaxing one muscle at a time, use of a Lacrosse ball and then a "Theracane" to release bound muscle tissue, locating and annihilating trigger points, 3 hour ridiculously hot epsom salt baths, meditation, attempting to reduce stress/drama, creating a peaceful home environment and developing core strength. I am grateful that you shared. Peace on you!
Thank you so much for this video. I've read other comments and I'm also feeling very lonely cos' people don't understand what is going on in my body and mind and that I have no power to change it. It's important to tell more other people about this illness
I don't understand how doctors still do not believe in Fibro, when it's been around for so long, and there is proof now that it is not a psychological illness.... You did right firing him/her!
Oh my gosh my story is the same! Mine started with extreme fatigue and then went to all over body pain that has increased. So sorry you're not being taken seriously! I know that feeling. 😢
I'm pretty sure this is what I have. I just need to see a doctor to get checked out. I started getting symptoms while working 11-12 hours days back to back. I worked in a very toxic, hostile environment. They push you to the edge to get results and this was repetitive type of work. You have to make your numbers if not you get warnings.. Standing long hours , doing the same routine over and over again. My upper shoulders have constant tension that never goes away even w medicine. I get burning sensation in my thighs. Sometime they would go cold to the touch and numb. Now I've got tinglingin my neck and the burning sensation is on my side.. i've got arthritis in my hands. My hands are messed up. It's terrible.
Hi sister I’ve been living with Fibromyalgia 😰…for more than 5years now but I got rid of it naturally after using dr Omo herbal medicine his channel youtube.com/@dromocure
Thank you for your video! I have been doctoring for 4 or 5 years now, not knowing what is wrong with me. I found out that I had a tumor on my ovaries and I thought I would start feeling better and I didn't. I found out I had an ulcer and thought I would feel better after getting medicine to fix it, and I didn't. I am now reading up on fibromialgia and everything you say is how I feel. I also never want to do anything anymore, because I hurt all of the time and I know people don't understand. It is a very frustrating disease, that is for sure! Thank you for sharing your heart and I pray blessings on your life and that you can find a way to feel better. (If you find that out, I would sure like to know!) Take care! Terri
im so glad you made this video , I was diagnosed with fibro 7 months ago but I have had symptoms and been in doctors since I was 6 , its so hard , especially with work , I just wish it would go away
I can understand your struggle with trying to deal with fibro and work at the same time. I've missed both school and work during these past few years and when you manage to go it is still such a struggle. I hope you can work with your doctor to feel better eventually. :/ I can even imagine how difficult if must have been for you to go through this all of these years. You are such a strong person!
I feel your pain, your lack.of belief from doctors, being referred to a psychologist 😣 I've been diagnosed for around 10 years now and have a pain plan that works for me and through process of elimination found alternative therapies that I find work. If you do want to talk or just vent frustrations to someone who gets it I'm happy to listen, can't say I have all the answers but having someone to understand makes a world of difference.
My story is very similar. In January 1994 at 27, I started having severe random pain for no reason. Several doctors and tests, some ER visits with no answers and then a Rheumatologist that lectured me about doctor shopping and called my family doctor in front of me to tell them that I need to stop going to so many doctors! I actually pulled over on the side of the road after leaving that doctor visit and sobbed uncontrollably because like you, I thought this was going be the doctor to finally put the pieces together and help me. Finally, in a doctor visit for a sinus infection, with a doctor my family used decades ago in a city I was visiting at the time, that doctor said I might have FIBROSITIS. They don't use that term now, but it did steer me in the right direction and help me get to my Fibromyalgia diagnosis. I've tried many drugs, sleep aids and pain killers. Best thing for me is deep tissue massage therapy. I would also recommend having your thyroid checked and vitamin deficiencies checked when first diagnosed because that can mimic fibromyalgia pain and/or exacerbate your symptoms. FYI: I have had many "flare ups" over the years, usually in the winter from tight cold muscles, but I've never been as bad as I was when I was first diagnosed. Stretch, get regular massages, buy a big hook to reach the trigger points in the neck and shoulders, take vitamins, keep warm in cold weather and take naproxen or ibuprofen when it's intolerable. Whatever you do, even if the pain is immobilizing, keep moving. If your neck is stiff, turn your head like it doesn't hurt, walk if your legs hurt, even real slow if that's all you can do. If you give in to the tight pain it will get worse. Mind over matter, move fluidly as best you can and it will get better faster. If I could only give one piece of advice, it would be to MOVE as much as possible to release the tender points and feel better faster. You don't have to run a marathon, slow, gentle, steady progress.
Thank you for this video! I also wanted to start doing fibro videos as well because I noticed that there weren’t many on YT as well. I had the exact same issue with my doctors and RA. She basically didn’t believe in the Fibro dx which made my heart sink. However, I did all her tests and came back negative for spine and Sjogren’s. I’m about to walk myself into a fibro specialist center for a dx. It’s very frustrating to have anyone believe you. But when you’re in a flare it’s unbelievably painful and debilitating. 💕
Thank you for making this video! I haven't been diagnosed with anything but I've been bouncing from doctor to doctor for the past two years and I do feel so hopeless and like it's my own fault. It's incredibly discouraging. This video and all the comments make me feel a bit less alone.
One thing I have learned with this disease is that everyone shares some similar symptoms and also, all of us have different daily issues than others. It does stink that there is still not much known and getting relief is not easy.
My sister has Fibro and it took awhile for them to diagnose her too. I wish they would find a definitive test to diagnose people with it. I'm so sorry the doctors didn't believe you. That must have been so frustrating! I have an autoimmune disease as well so I get what you mean about family/friends not understanding what it's like. Great video! -Mel
+Melissa & Lindsay Yeah. Hopefully research can go forward so they can find out why fibro appears and maybe then it will be easier to diagnose and be taken seriously. I am sorry both you and your sister has to go through illness! You are very strong for doing so!
my symptoms started with migraines then vertigo,heart pulptations, then shoulder /back pains,then hairloss,then panic attacks because I was confused/scared of not knowing what was wrong with me... and frustrated with doctors.. then over the years Im now bedridden 50-60% of each day. I was finally diagnosed so I know now at least what to call this curse- fibromyalgia.
I am so sad you have to go through all of these things. These past few weeks I have been bedridden quite a lot as well and I understand just how frustrating it feels. Keep looking for a doctor that doesn't make you frustrated and I hope you can find things that will make your situation a bit easier. I am currently looking for such things myself! Thank you so much for watching and commenting on my video.
I m in d d same path.how can we live bth it?very very frustrating. I m fromINDIA. MY name is subrat.how r u r8 now.hope for d best.plz help me on my whats app no is 07377893705.plz
I think I have Fibro and I feel so unheard and that no one believes me. I find myself limiting my activities because it could send me to the emergency room and Im just treated like a drug addict if I ever go. Ive been through so much in the past 5 years and I feel like Im still Im not even close to a diagnoses. I feel so hurt and betrayed by the health industry.
Hello sweety I’ve had fybromyalgia for many years I’m sorry you have this . I want to put my story on you tube but people wound not believe the hell ive been threw I’m hear for you sweety if you need any advice I’m experienced ... today I have a flare up it’s terrible ... if you need to talk let me know .il forward you my email You are so beautiful . It’s great your telling your story ...
they told me i have joint hyper mobility syndrome but im not double jointed im just in constant pain all day every day i think i have this instead thanks your video helped alot
I have onset early arthritis got diagnosed but I think I got fibromyalgia too I have pain all over my body sometimes my first place I feel pain was my neck I also have brain Avm and get fatigue,migraine since 2011 I am now 34
Hi sister I’ve been living with Arthritis 😰…for more than 5years now but I got rid of it naturally after using dr Omo herbal medicine his channel youtube.com/@dromocure
I am almost 100% sure I have fibromyalgia and chronic fatigue although I haven't been diagnosed yet but I've been doing extra research and I started watching videos of other women struggling with the same problems. I FEEL YOUR PAIN! I've been feeling it every day for as long as I can remember and although I have been transitioning to a healthy lifestyle it still worsens over time. I'm 24 and I remember being in pain all the time in high school, always tired, always depressed and I knew it wasn't normal. I felt like an old, sick, dying person but I was just a teenager. It feels HORRIBLE that no one understands. Everyone thinks you're just a whiny bitch who doesn't like to be happy or have fun with other people and the guilt and confusion just makes it so much more painful. Thank you for sharing this video. We are not alone. I am going to go to get an exam done to get my results and I am going to start taking Cannabis oil to try and reverse the disease. Have you ever tried it or would you try to use CBD (Cannabis) oil to treat your disease?
I am sorry that you still have no diagnose for your problems, and that you too, had to go through this at a young age! :( The first step to feeling better about it is definitely to get a diagnose, so I think you're doing the right thing about getting examined! Cannabis is not legal where I live, so I think it's not something a doctor would recommend to you in the first hand. I am not sure if it's used in medical purposes either, it's not very popular here yet I think. :/ But when you do start taking it, I am very interested in hearing about your results! if it makes you feel better? Let me know okay!
ive been going through this since I was 12. my first symptoms was mitral valve prolapse gerd and extreme back pain n sensitivity to the touch. ive been told time after time there is nothing wrong with me. blood test after test negative. ive lost so many jobs. I didnt get diagnosed until I was 27. I have crying spells all the time. everything is depressing. I cant eat I cant sleep. I cant go n e where because I always feel sick. I feel like im not normal so I completely understand where u r coming from and what ur going through. stay strong baby girl. it just makes u feel better knowing u have a diagnosis..
Hi sister I’ve been living with Fibromyalgia 😰…for more than 5years now but I got rid of it naturally after using dr Omo herbal medicine his channel youtube.com/@dromocure
I know this is a late comment so I hope ppl see it. You can all get better like I am doing reverse therapy.there's a few clips on UA-cam so plz check it out. Stop treating symptoms and treat the root cause, you can heal yourselves xxxx
lol, funny you mentioning Dr House. I've often wished I could see someone like him as he's determined to get to the bottom of mysterious illnesses unlike actual doctors who give up after 3 minutes of investigation..🙄
I'm sorry about doctor not believing you. It very painful to have people that are suppose to help you make you feel band about pain that you have no idea where it's coming from . I wish you the best Mind, Body and Soul.
I was diagnosed last August after 3 years of suffering! I shared my story on my channel too! Hopefully we can raise awareness for this condition and find a cure
I am 24. I also had really bad "growing pains" since I was 12. I've always suffered from fatigue and anxiety. little by little more symptoms appeared, constantly dismissed and referred by doctors. I was made to feel crazy. I thought maybe if I got psychological help to be happier, my body would also get better if it was all in my head. It didn't. doctor's in the US tell me that I also should just live with it. that it wasn't THAT BAD. my symptoms weren't connected because as you know, there are so many things linked to fibromyalgia. I got to the point after I had my son at 20 years old that I couldn't hold him. I felt like I was going to constantly drop him because my arms were so heavy with nerve pain and the pressure of his little feet standing on my legs made me break down in tears from pain. I didn't see a doctor until a year ago that actually helped me. I spent thousands of dollars on specialists and therapies over the past year. diagnosed with fibromyalgia April 2016. I've lost family and friends and most of my sanity. this year I am finally attending university for the first time in my life and working. my son is now 4 years old and he is the light of my life. I wouldn't be able to handle this condition without him.
thank you for sharing your story, I hope you can find a way to ease your symptoms. My mom has fibromyalgia, she was often told that she was fine, that she was making things up, some doctor even told her she had bone cancer. Finally someone diagnosed her with fibromyalgia, now I'm going through the same process of getting myself tested for different things and ending up with normal results but every day I am more convinced that I may have fibro too. It is just so difficult for a young person to not be able to enjoy and participate in life as we would like. Drop me a message anytime, greetings from Mexico :)
I was diagnosed with fibromyalgia in 2011 and it has gotten worse it does keep you homebound at times and the chronic fatigue is awful as the pain is and you never know when you're going to have a flare up and you can't get out of bed and I lost my job because of it I miss so much work and I work for that company for 6 years but like I said each year has gotten worse I hate it and now I have a lymph node on the side of my neck that is swollen and I have a lot of the symptoms of Hodgkin's lymphoma and I need to see a doctor on that now but I tell myself God's will be done and I pray everyday and I take medications so good luck to all of you out there I'm praying for you and have a blessed day
Great video, I was diagnosed just a few weeks ago after 5 years in constant pain, It's a great idea to support each other, as like you said there is a lot we don't know about it. I have traced mine back 5 years to when I was put in an induced coma for bacterial pneumonia, Thankfull after dozens of dr's I got very lucky and went to see a dr who just turned out to be my hero, there is no cure, but we can try and do the best we can. Never ever feel guilty if you have to cancel plans with people, if they love you they will understand. xxx
Thank you for what you wrote... I'm crying now reading this. I'm fed up after few years of chronic pain (it is not first pain in my life) and I feel guilty and shamed, that is my fault. I started to looking for the reason of my pain and everything looks like fibromyalgia but my dr (it is very usefull) try to explain everything using depression. It's frustrating and annoying cos' I know my body very well and I am able to distinguish diffrent sort of pain. I'm worry of wrong diagnosis. What should I do if I'm feeling like wrong diagnosed? I'm living in London, UK. Thank you for any advice. All the best! Iwona
@@yvonneb7932 Mine took years to diagnose because I almost believed the doctors that it was in my head, plus I was being a typical male trying to ignore it because men are strong and dont let pain stop them from doing things. until I started hitting the wall and could barely function from pushing too hard. Thankfully I just found an awesome rheumatologist who diagnosed it as fibro as I have nearly every symptom I have read about since getting the diagnosis. I had heard about it before but never really looked into it. Ive started palexia but tbh I havent noticed much difference maybe only just taken the edge off. I cant believe my first rheumatologist even kinda made me think it was partly in my head and was reluctant to diagnose me with chronic pain. I bet if someone asked her she wouldnt believe in fibro.
Josephine hwaiting! I really feel for you... and I get so mad with at the Swedish health care! Damn, why don't they want to help people and make them feel better? Why do they have to question everything we as patients feel? It pisses me off! I've had my troubles with them too and finally (after questioning my body, feelings and sanity) I just gave up, thankfully I don't have to handle physical pain like you. But you will be fine because you are a strong woman, I know (cause I'm old and wise ;) )
Hello! this is Eileen in Belfast N.Ireland. I'm very interested in your story(I don't have ur first name) but I think I have similar to your symptoms. I feel just like you said ...when I get myself out of the bed with a lot of effort it dos'nt feel like I had much rest. Then it's like torture everything I do from then on until lunch time. Then it gets a little worse again coming up to bed time. I've had steroids prescribed a year or two ago but they're not the answer because it all returned a month or two ago. Now I've decided to go on the green juice diet program for a few weeks starting from tomorrow 23rd May. My name is Eileen from N. Ireland (Belfast). We could keep in touch. All the very best for your future. ⭐️
I know this is a bit old, but I just want to say that it takes a lot of guts to speak out about this illness. I was diagnosed about 2 years ago. At the time, I struggled with a lot of the same issues from doctors that you had. Now I know that my illness is a crossover illness from an autoimmune condition. But in the beginning it was really tough. The pain is enough to make anyone feel isolated. My advice is to take the time to find your triggers. Modern medication can only do so much, and unfortunately there is no cure. Don't keep it bottled up girl, the stress makes it so much worse. Open up, there is no judgement.
My therapist wants me to ask my doctor about it and I’m nervous because of all the gaslighting I’ve experienced about my pain over the past 6 years. It breaks my heart you live in Sweden and I live in America and this was posted 6 years ago and people’s pain is still not being taken seriously. Thank you for sharing because i feel less alone and what you said about starting to think you’re making it up and causing it yourself is so relatable and I’m so sorry we both ended up thinking this way when it is not our fault and they should be helping us and believing us.
Thank you so much for making this video. I cried as I'm so sad, but relieved that I'm not alone. I hate the thought that so many people are experiencing this. I believe I've had this since childhood. Just everything makes sense now. I'm 27 now and can finally name what is actually wrong with me. I no longer have to question my sanity. Much love and heres to better days❤️
Thank you for sharing this, I have recently been through exactly the same thing and it's so heartbreaking when the doctors don't take you seriously. I also understand how you feel about being young and not being able to do what you want to do (I'm 18). Thank you for being brave enough to share your experience, this has helped me so much. x
It took me 10 years to get diagnosed I've had it for 17 and I'm 39 but looking back even in childhood I had minor symptoms...over the years I have developed more and more.symptoms. It hasn't been proven but I feel like it is progressive. Good luck and stay #fibrostrong
What arer your symptoms you had in childhood? I think I had some as well but I'm not sure.
wow I was crying throughout the whole video. I'm experiencing the same thing as you are but I have done all kinds of blood tests but the doctors can't find anything. I haven't been able to go to school for almost 2 months and It's really hard not knowing what's wrong with you when you feels so bad.
Thank you, this video really helped. Thank you
That dr who told you to just 'live w/ it', I had the same thing happen to me. Yrs ago, back in my late 20s (I'm 44 now), one dr got right up in my face, said "young lady, you need to just go home, get a husband, & get on w/ your life". I was defeated. Needless to say, I think the combination of a lack of diagnostics, coupled w/ the typical way women are treated, makes for a real nightmare for us when we have to deal w/ chronic illness & the medical community. In my opinion, the medical industry is mostly garbage
Thank you so much for sharing your story! It has helped me understand better! I literally just had tons of blood work and all came back normal!
I am so depressed and hopeless
my neurologist has no empathy, I saw him today to go over my results and he was pretty much like you’re a hypochondriac!
I have never felt so humiliated! I’m done going to doctors.
I thank you from my heart!! 🙏🏽❤️ big hug!
God bless you! 🙏🏽
You have expressed so much of how I feel. I'm in the process of being diagnosed. My rheumatologist is pretty confident that it is fibromyalgia. The guilt of feeling like I've been lazy and made up the sickness in my head. Oh my gosh. I'm not the only one who blamed themselves!
Your honesty and vulnerability is so comforting. Our loved ones can't understand pain, thank goodness, but we all have each other to know. I hope you share more about this soon.
I'm 24 and have been having a hard time since graduating Uni, finding a career I feel like I can do daily. I've felt like a failure I this aspect. Can you relate?
So great to listen to your story...i understand. Its so painful. I like what you said you are not reduced to your pain ❤️❤️❤️
Sweety you need to talk about it
People especially your family need to know what you go threw and how it affects you .
My first husband divorced me cos of my illness
And he took all my 5 children away . So sad 😞 I
Some people are so evil instead of helping ..
They give you more stress I’ve had fybromyalgia since 2004
..but talk about it ...
I’m a fybromyalgia warrior
And all those that have it
Are fybromyalgia warriors .
And you can be too ok
Stay positive ..............
People that don’t have it just judge you ..
O you look fine to me ..
Ignore them ....
Only you know the pain you suffer .
And everything else .
That goes with fybromyalgia .
Lot of tender hugs 🤗 .
I m facing it scince 2004.ur 1st husband is himself a fibromyalgia for u....what d hell.sorry.pray for the best ..
Thank you so much for your courage and sharing your story. I was diagnosed with FM early this year and totally feel you. My story is a little different because I'm a man. Doctors have looked at me as if I was crazy for many years and I was told that there's no possibility that I could have FM. Stories such as yours confirms the fact. It's kinda sad that we rely on professionals for help, unfortunately it's all about money. Remember you are not alone and there are many that share your story.. Relief is coming soon now that we know. Much love to you and stay strong.
I'm sorry that you have to go through this, not just the illness itself but the feeling of isolation that seems to come along with it. It's so awful that the doctors let you down. It's sad that you can't talk to the people around you about this, I hope you find more support online, and do drop me a message if you need to vent. I wish you the best of luck for the future.
Thank you so much for the kind comment Alice! I am actually more confident that things can get better from here, since I finally have the diagnose. Thank you so much for being so supportive and gorgeous all the time!
That's great to hear :) And you're welcome! Do message me if you need to vent x
I suffered with this for about 4 years before I was told what I possibly had. It broke me down to nearly nothing. Mentally I can't function anymore. Everyday jus getting out of bed is a task in itself. Thank you so much for your video. I feel this same thing everyday of my life.
+melissa neal I am so sorry you have to go through this! If it's any consolation, you are not alone, and through certain methods of help your life can get better. You are so strong for going through what you go through every single day of your life and I understand the feeling of not being able to get out of bed. I feel that way a lot of the time as well. But don't give up! Take things slowly, and know that life will get better eventually. If you ever need to talk, feel free to hit me up!
You are so beautiful and so strong! I really hope the best for you, and that opening yourself up to others can help you help others and also find people that have a similar problem. You're so inspirational! rooting for you xx
Sorry for such a late reply, but thank you so much for this kind comment! It really means a lot to me.
You are so brave to talk about your journey ! I am 24 and have been dealing with Fibromyalgia for more than 10 years and it has been a horrible journey. It took doctors about 5 years to diagnose me and trying to still cope with is is very hard. Specially the part where you say you can’t really explain it to everyone around you... and having to deal with this silent pain and trying to put a strong face everyday. 😭 Thank you for the video, it made me feel understood and not alone in this journey.
Jofelisious...Your an inspiration to so many women and men by sharing your experience about this painful life changing disease. I've had fibromyalgia for 23 years.
Thank you so much for your kind comment! Having Fibro for 23 years must have been really hard! You are really strong for doing so.
@@Joffelicious i hv already spent 17 years on it.plz help me
I really appreciate this video. Thank you for being vulnerable to us. I was just diagnosed with fibromyalgia today. I am confused. It seems like the onset of this was a traumatic injury from a fall off a horse. It’s been over a year and a half from the fall, but I have neuropathic pain in many places in my body and I have to be treated with medication. I appreciate you sharing your journey, for it is helping me to start mine❤
I can relate to this so much. I’m having a awful day and just need someone who understands to talk to so this video really cheered me up in ways. Thank you for making this video. X
I want to applaud you for your courage to be proactive on this situation. I am a massage therapist and I have several clients that have been diagnosed with FM or CFS, but I take all cases seriously. I encourage you to look into nutritional support with physical, mental, and spiritual activities to help you overcome this. Be aware of any drugs prescribed to you and go ahead... research it! You are doing the right thing!!
Thank you for your story, and yes more people will start to understand as more people start to tell theirs too. I was diagnosed in 2008 with Fibro., went thru most of the things you have gone thru and still do today. I have spent all these years trying to figure out how to feel better. Everyone with fibro has their own issues and ways they deal with it, but this has been my experience. As bad as I hate to say this the doctors were right about getting used to some pain. I went thru several stages of grieving who I used to be, then I tried to fix it. After all these years I learned I could not fix it and make it go away and get my old life back. I learned how to manage my pain and symptoms and learned to have a different life (a new normal). I feel pain every day but have learned to ignore it on good days. On the bad days you take it easy, and you have to get rid of the guilt that comes along with it. One of the most important things you will learn is not to over do it when you are feeling good, take it slow and your good days last a lot longer. Don't try to work long days without a break. I work a few hours and take a short break to rest and I don't hurt as bad. I take pain meds, but only at night because that's when its worst for me. And Ibuprofen during the day. Forgot to mention I also have Lupus which sometimes accompanies Fibro. The best thing you can do is start paying attention to what causes flare ups, and learning how much you can to without putting yourself into a flare up. And you are right about other people not understanding, only the people that see you go thru it will understand, but not always. With Fibro you have to stop trying to get people to understand and do what you need to do to feel better, or your will stay depressed. True friends and family will understand and stand by you thru this, the rest you shouldn't worry about. Its hard to lose friends but you become much closer with the ones who really care. I still have a life, its just not the life I had before and that's ok, I have come to peace with it. Good luck in finding your new future, and don't give up, you just learn to be thankful for your Good days, and not stress about the bad one.
I am so glad you made this video. I have suffered from fibro for many years. It took a very long time to get diagnosed. I also search youtube for videos about fibro, and there are not many out there. I also feel alone. I have a hard time explaining to others what is wrong, and feel guilty about missing going out with my friends. My rheumatologist is wonderful, but I have found to not even mention it to other doctors. For you are believed to just have depression. My pain started in my chest. I have tried many meds and alternative medicine. Praying healing comes for you soon. Don't give up. You are not alone and there is hope!
I am sad to hear that you feel like you cannot discuss this with your other doctors. Just know that even though you can feel lonely sometimes, you are not alone. There are plenty of us out here and I think that anyone who share this experience would be willing to be there for support and talk about it! I hope you can soon find a treatment that makes your life feel happier and better, you deserve it! Thank you so much for watching and commenting.
I've had fibromyalgia for the past 13 yrs and still find people who don't believe or understand what it's like and how it affects me. I felt like I wanted to hug you when you're talking about this. I hope that your symptoms have been manageable and you've been able to cope with the pain it causes. there are support groups online through social media and also newsletters you can sign up to via e-mail.. Sending hugs, keep smiling and know that there are lots of us here if you need us xxx
thanks for sharing. its been about three years for me with similar symptoms and i completely understand not being taken seriously or being able to get a diagnosis.
You are a brave girl. Glad u finally got diagnosed that is actually first step to understand it. Thanks for sharing with us. Keep smiling
Hi sweetie. I have Fibromyalgia for 12 years. I was diagnosed only after 5 years of having severe pain. Anyway...long story short...u need to be positive. And when u have a flair up...u need to get up, get dressed,get moving. It's unfortunately a very difficult thing to deal with because lots of family and friend tend to think u are nuts. But we know better....chin up Fibro fam.
Hello I have herbal medicine that will help you get rid of them naturally. Check my video for my information .
Your story is so inspirational. You are inspirational. The fact that you live with pain daily and put on a brave face and face the world, facing "experts" who told you it's nothing, and still standing firm - I hope your message of hope reaches so many cause it did create awareness for me I had no clue about this!! I'm sorry to hear you have it and that there is no cure but I know you'll never loose hope - you seem so strong. I sincerely hope your life is amazing and you see so many good and happy days and moments hun. THANK YOU for sharing 😘😘
THANK YOU for watching and taking time to send me such a sweet, thoughtful and caring comment. It really gave me a lot of strenght and happiness to read this and I couldn't be more thankful.
Joffelicious
thanks for sharing your story! hugs! I know there's millions of us that have fibromyalgia, but sometimes I feel alone... its so good for me to find / hear other fibro ppls stories on here!
I like finding videos where people talk about their experiences as well, because as you said, it's less lonely. Just know that you are not alone and we can be there for each other!
Sorry that you have to go through this, it must have been really scary. It takes courage to share personal experiences and struggles. Sometimes we get body aches without realising it could be something serious. This video is very useful and helps bring awareness to Fibromyalgia.
Thank you so much Alice for being so kind and listening to my story. It feel great to feel your support. You truly are a wonderful person!
Thank you soo much for opening up about fibro! We need more awareness for invisible chronic illnesses. I have fibro too and watching this video made me not feel alone and it was very relatable. There are so many people think we're faking it, even doctors. Which is a sad thing. I hope they will do more scientific research for fibro! You did an amazing job with this video 💜
Omg thank you so much for finding me! I need more friends who go through the same thing. Saw that you had added me up on twitter so I added you back. :) I really agree with you that they should do more scientific research on it. So many people suffer from this and they do it a bit too silently I feel! Thank you for leaving such a nice comment!
+Joffelicious you're welcome sweetie ❤️ I agree, talking with people who go through the same thing is so much easier cause they'll understand. Thanks for following back on Twitter, feel free to message me 😄 Sadly enough to many people are ashamed of this illness so I'm really happy to see someone talking about this topic, it's not our fault, we didn't choose to be sick!
You are an amazing woman!
I give you so much credit for talking about it and probably helping others. I look up to you and think you are fantastic!!!!!!!
+Anna-Karin Olsson Tack så mycket!!
Sweetie! I'm sorry for your pain!! I send you huge hugs !
Your beautiful and im very happy to know that you finally have closure 💛
Thank you so much for sharing yourself and being vulnerable. You look great like I do, (so I always hear, though cannot hide my fatigue) yet we both suffer inside with pain. I was diagnosed today so it has been a tough one, but have been struggling from this for many years, without a diagnosis. I can relate to ongoing pain, fatigue, lack of sleep, and being blamed for this, though the people that do the blaming are the people that do not suffer from this. I truly feel for you. Keep sharing please and thank you.Hugs! xx ;)
I appreciate your video and for being brave and sharing this because most people don't understand this illness. Like you, my mother has been diagnosed with Fibromyalgia for years. I know that I have it, but I'm in the process of getting diagnosed. I reached a place now that it is becoming debilitating. I feel awful everyday. I really don't have good days anymore.
Really true
My mum has recently been diagnosed with this, it was a diagnosis that took around 6 months to get. Just after Christmas 2015 my mum was taken off her feet. The doctors at first said there was nothing wrong then they said it was my mums iron levels then they said it could be MS then a brain tumour and then fibroids and then finally fibromyalgia. I hate seeing my mum in constant pain and I love to watch these videos cause I feel like my mum isn't alone ❤️ keep strong 💪🏼
When i saw your video and almost cried.I too have FM and have had it for many many years and my dr's also told me it was all in my head etc. I would like to keep in touch and encourage each other. I suggest you find and read a book called Osler's Web by Hillary Johnson. She did the research on CFS and some dr's think both diseases are the same as I think as well. This book tells how it began and how horrible it was. Please hang in there and keep looking for help and don't get discouraged. Also watch out for false help remedies who just want your money.
Thank u for your video. I believe I have had it since i was 27, however never diagnosed at age 66. I didnt know about fibromyalgia until diagnosed and then googled it. Great to hear from someone who shares the same symptoms. Thanks
I have a friend who went through a similar experience with doctors in Sweden (with them not wanting to help her/not believing her) -- You are very brave for speaking about it on UA-cam!! Just know that in the future, I hope you never feel pressured to keep your symptoms and your feelings a secret! Likewise, I hope you never feel pressured to share more than you're comfortable. I'm rooting for you
Really?? I really do feel that the medical care here needs to improve. Why would you even go to the doctor and pay money if you weren't in need of help. So stupid. Also, there are studies here that show that women get treated differently by doctors even though we're supposed to be one of the most equal countries on earth. Step it up sweden!!
Thank you so much for your encouraging comment. You are a wonderful youtube friend!!
I just started crying listening to your frustration of people telling you it's all in your head. This has been me for 20 years. I get so sick I go and plead with a dr who does the same blood work and tells me I'm fine. For years I thought if I just loose weight if I just work out if I can just sleep longer I'll feel better. There's nothing wrong with me. Just go to work. Just keep moving. I've had and still have thoughts of suicide because the pain is so awful and everyone just treats me like I'm lazy and avoiding work. I can't find a dr that takes me seriously. I hate life.
Having this sucks so bad. No one will not understand the pain, fatigue, morning stiffness, ibs, rashes, muscle spasm, sensitive to sun, certain food. nausea, chest pain etc. im still learning about mines. i have it now most a yr. People would tell me its all my head. its real. i really dont have a social life. It feel like you have the flu everyday.
Do you ever have body parts swell up ? My tongue feet and hands tend to swell especially after hot tubs or hot showers. But sauna doesn't do it it just makes feel irritated.
Exactly i m feeling d same bt yet to b diagnosed.i m subrat from INDIA.my whats app no is 07377893705.plz inform me.regards
Have had fibromyalgia over 40 years. Had numerous viral infections for most of my life. Mononucleosis twice. Cutting down on gluten and sugar helps.
Thanks for sharing. It is silly to say but it is nice to be able to relate to others. I've spent my whole life having people look at me strange because of how I felt. It sucks but I am learning and living more than ever now. Keep Your Shine up
You are so smart and sweet so just hang in there and everything will be ok. I have been thru the same thing. Just stay strong!
When you’re voice started getting shaky I got tears in my eyes. I’m going through the process of figuring out what is wrong with me I’m almost positive it is fibromyalgia I’m in so much pain everyday and I just want you to know I know how you feel and I feel your pain. Hope you get through this 💜
I'm going through blood tests at the moment, I am on the start of my journey into what's wrong. My doc suspects fibro.
Thanks for sharing your story!
I developed mine about 6-7 years back. I was in my mid twenties and I'm 31 now. It's nerve wracking, disappointing, frustrating, and you really can't control your life because it's so life altering. Covid doesn't help.
I discovered I was a highly sensitive person (HSP) about three years back, so that explained my stuff..I'd had too much early life stress. My mom divorced dad for cheating and then my dad died soon after (two adverse childhood experiences (ACE's) score there.
Then we moved 6x in 10 years, between ages 2 and 12, which meant a new house, new shcool, new neighbourhood. I was bullied a lot... these two arne't on the score sheet, but they should be as they impact healthy development.
My mother was an adult child of an alcoholic father, so she was emotioanlly immature....
I am 25 almost 26 years old. I have been dealing with fibromyalgia my whole life and if you need help or possibly need some tips let me know!
I am sorry for my late reply, but thank you so much for your kind comment! If you have tips I would love to hear them! Considering all of the comments I've been getting on this video, I am sure many more people would also find them helpful :)
Thank you for making this video
You seem so lovely! I hope you get some relief soon. I'm also in the pain cycle process and have T1 diabetes so I understand the chronic conditions. I also think I may have FM so I too like you came online to learn about it. Great video
Ah yes, if all doctors could be like Dr House! That would be awesome. Thing is, he'd want to do a lumbar puncture as that seems to happen in every episode, and they look painful 🙈😊
Aww :"c this made me so sad and so happy.
I remember you telling me about your struggles with your pain and the stupid doctors and how helpless i felt.
You have been so brave through all of this and i'm so happy you finally have been diagnosed! It must have been a nightmare trying to explain when no one understands.
I do think i realized how tough it was for you but i of course could never really know what it felt like. I do hope that i never pushed you to anything during your more painful episodes :C
I think you did an amazing job doing this video. I would never been able to.
Keep fighting and if you ever feel like talking about it I will always be here for you. No matter when my ears (well eyes and fingers since i dont really meet you irl XD) are always to your service :3
FINA DU!!!! jag kan lova dig att du aldrig gjort eller sagt något som pressade mig eller så. Du är ju en av de få som jag faktiskt pratat med om det och så. Tack för att jag har dig! :)
I have fibromyalgia too found at age 30 just before I married mine husband of almost 9 years! I have the same symptoms as u! Just subscribed!
I was diagnosed with fibromyalgia after being undiagnosed for 4 years: it started when I was 14, I'm 18 now. I suffer from basically every symptom except digestive/abdominal ones.
I had friends and teachers disregarding my pain because I had no name therefore they didn't believe me, doctors misdiagnosed what was happening to my body and told me what was happening was normal.
I thought I would be happy about finding a name for what is going on with me, but honestly I just feel so helpless for it...
I know it's tough and even when you feel alone your not. The thing about Fibro you have to learn to manage the pain as part of your new life. It takes time but there are many resources online and youtube that can help you. I know that in no way this is going to be easy but remember take it one day at a time. It will be okay.
Holy S**T!!! 'Twas like you were channeling my exact story. Lol, getting out of bed in the morning... I developed techniques that would make Russian Gymnasts envious. If I had two to four hours to try and relax every part of my body, I'd start to get mobile. The worst days involved almost not moving at all and inability to think straight. Yes, the "guilt". Am I just lazy? Am I irresponsible? Do I not have discipline and strong enough will? I tell you, most folk with this have amazing power of will. I plodded through two decades of 60 hour work weeks and nearly became suicidal because I knew in my heart I couldn't keep it up. Your own pain is inexplicable to anyone else. It's invisible as well. I'm 47, just diagnosed, and will begin the journey to alleviate my symptoms. My own methods and "folk" techniques are evidently on point, and now shall be refined. Lol, here's a quick list of my self-developed techniques: Lying upside down on the stairs, Lying on the floor and relaxing one muscle at a time, use of a Lacrosse ball and then a "Theracane" to release bound muscle tissue, locating and annihilating trigger points, 3 hour ridiculously hot epsom salt baths, meditation, attempting to reduce stress/drama, creating a peaceful home environment and developing core strength. I am grateful that you shared. Peace on you!
this is soooo me!!!! I want to cry..😢
Thanks for sharing your story. I hope things get easier for you soon.
I know what you mean when that no one understand you. I have Fibromyalgia chronic fatigue and the worst thing ever 😔
Thank you so much for this video. I've read other comments and I'm also feeling very lonely cos' people don't understand what is going on in my body and mind and that I have no power to change it. It's important to tell more other people about this illness
I fired my rheumatologist after I tricked him into admitting he didn't believe in Fibro.
I don't understand how doctors still do not believe in Fibro, when it's been around for so long, and there is proof now that it is not a psychological illness.... You did right firing him/her!
Great Video. I was diagnosed 5 years ago and just posted my own video on my channel about it. Thanks for sharing.
+A Life Full of Threads oh, really? I will head over to your channel and watch it. I can always use more friends to share this experience with!
Oh my gosh my story is the same! Mine started with extreme fatigue and then went to all over body pain that has increased. So sorry you're not being taken seriously! I know that feeling. 😢
I'm pretty sure this is what I have. I just need to see a doctor to get checked out. I started getting symptoms while working 11-12 hours days back to back. I worked in a very toxic, hostile environment. They push you to the edge to get results and this was repetitive type of work. You have to make your numbers if not you get warnings.. Standing long hours , doing the same routine over and over again. My upper shoulders have constant tension that never goes away even w medicine. I get burning sensation in my thighs. Sometime they would go cold to the touch and numb. Now I've got tinglingin my neck and the burning sensation is on my side.. i've got arthritis in my hands. My hands are messed up. It's terrible.
Hi sister I’ve been living with Fibromyalgia 😰…for more than 5years now but I got rid of it naturally after using dr Omo herbal medicine his channel youtube.com/@dromocure
It must have been incredibly frustrating for you. Glad you got a diagnosis eventually, although diagnosis doesn't equal cure unfortunately..
Thank you for your video! I have been doctoring for 4 or 5 years now, not knowing what is wrong with me. I found out that I had a tumor on my ovaries and I thought I would start feeling better and I didn't. I found out I had an ulcer and thought I would feel better after getting medicine to fix it, and I didn't. I am now reading up on fibromialgia and everything you say is how I feel. I also never want to do anything anymore, because I hurt all of the time and I know people don't understand. It is a very frustrating disease, that is for sure! Thank you for sharing your heart and I pray blessings on your life and that you can find a way to feel better. (If you find that out, I would sure like to know!) Take care! Terri
im so glad you made this video , I was diagnosed with fibro 7 months ago but I have had symptoms and been in doctors since I was 6 , its so hard , especially with work , I just wish it would go away
I can understand your struggle with trying to deal with fibro and work at the same time. I've missed both school and work during these past few years and when you manage to go it is still such a struggle. I hope you can work with your doctor to feel better eventually. :/ I can even imagine how difficult if must have been for you to go through this all of these years. You are such a strong person!
I feel your pain, your lack.of belief from doctors, being referred to a psychologist 😣
I've been diagnosed for around 10 years now and have a pain plan that works for me and through process of elimination found alternative therapies that I find work.
If you do want to talk or just vent frustrations to someone who gets it I'm happy to listen, can't say I have all the answers but having someone to understand makes a world of difference.
My story is very similar. In January 1994 at 27, I started having severe random pain for no reason. Several doctors and tests, some ER visits with no answers and then a Rheumatologist that lectured me about doctor shopping and called my family doctor in front of me to tell them that I need to stop going to so many doctors! I actually pulled over on the side of the road after leaving that doctor visit and sobbed uncontrollably because like you, I thought this was going be the doctor to finally put the pieces together and help me. Finally, in a doctor visit for a sinus infection, with a doctor my family used decades ago in a city I was visiting at the time, that doctor said I might have FIBROSITIS. They don't use that term now, but it did steer me in the right direction and help me get to my Fibromyalgia diagnosis. I've tried many drugs, sleep aids and pain killers. Best thing for me is deep tissue massage therapy. I would also recommend having your thyroid checked and vitamin deficiencies checked when first diagnosed because that can mimic fibromyalgia pain and/or exacerbate your symptoms. FYI: I have had many "flare ups" over the years, usually in the winter from tight cold muscles, but I've never been as bad as I was when I was first diagnosed. Stretch, get regular massages, buy a big hook to reach the trigger points in the neck and shoulders, take vitamins, keep warm in cold weather and take naproxen or ibuprofen when it's intolerable. Whatever you do, even if the pain is immobilizing, keep moving. If your neck is stiff, turn your head like it doesn't hurt, walk if your legs hurt, even real slow if that's all you can do. If you give in to the tight pain it will get worse. Mind over matter, move fluidly as best you can and it will get better faster. If I could only give one piece of advice, it would be to MOVE as much as possible to release the tender points and feel better faster. You don't have to run a marathon, slow, gentle, steady progress.
Thank you for your testimonial, you are truly an inspiration for all of us who suffer from fibromyalgia.:-)) God Bless.
Thank you for this video! I also wanted to start doing fibro videos as well because I noticed that there weren’t many on YT as well. I had the exact same issue with my doctors and RA. She basically didn’t believe in the Fibro dx which made my heart sink. However, I did all her tests and came back negative for spine and Sjogren’s. I’m about to walk myself into a fibro specialist center for a dx. It’s very frustrating to have anyone believe you. But when you’re in a flare it’s unbelievably painful and debilitating. 💕
Thank you for making this video! I haven't been diagnosed with anything but I've been bouncing from doctor to doctor for the past two years and I do feel so hopeless and like it's my own fault. It's incredibly discouraging. This video and all the comments make me feel a bit less alone.
Hope for d best
One thing I have learned with this disease is that everyone shares some similar symptoms and also, all of us have different daily issues than others. It does stink that there is still not much known and getting relief is not easy.
I have fibromyalgia too found out at age 30 just before I married mine husband of almost 9 years! I have the same symptoms as u! Just subscribed!
My sister has Fibro and it took awhile for them to diagnose her too. I wish they would find a definitive test to diagnose people with it. I'm so sorry the doctors didn't believe you. That must have been so frustrating! I have an autoimmune disease as well so I get what you mean about family/friends not understanding what it's like. Great video! -Mel
+Melissa & Lindsay Yeah. Hopefully research can go forward so they can find out why fibro appears and maybe then it will be easier to diagnose and be taken seriously. I am sorry both you and your sister has to go through illness! You are very strong for doing so!
my symptoms started with migraines then vertigo,heart pulptations, then shoulder /back pains,then hairloss,then panic attacks because I was confused/scared of not knowing what was wrong with me... and frustrated with doctors.. then over the years Im now bedridden 50-60% of each day. I was finally diagnosed so I know now at least what to call this curse- fibromyalgia.
I am so sad you have to go through all of these things. These past few weeks I have been bedridden quite a lot as well and I understand just how frustrating it feels. Keep looking for a doctor that doesn't make you frustrated and I hope you can find things that will make your situation a bit easier. I am currently looking for such things myself! Thank you so much for watching and commenting on my video.
I m in d d same path.how can we live bth it?very very frustrating. I m fromINDIA. MY name is subrat.how r u r8 now.hope for d best.plz help me on my whats app no is 07377893705.plz
I think I have Fibro and I feel so unheard and that no one believes me. I find myself limiting my activities because it could send me to the emergency room and Im just treated like a drug addict if I ever go. Ive been through so much in the past 5 years and I feel like Im still Im not even close to a diagnoses. I feel so hurt and betrayed by the health industry.
Thank you for sharing your story. You are very brave. I love your accent 👏👏👏
Hello sweety
I’ve had fybromyalgia for many years
I’m sorry you have this .
I want to put my story on you tube but people wound not believe the hell ive been threw
I’m hear for you sweety if you need any advice
I’m experienced ...
today I have a flare up it’s terrible ...
if you need to talk let me know .il forward you my email
You are so beautiful .
It’s great your telling your story ...
they told me i have joint hyper mobility syndrome but im not double jointed im just in constant pain all day every day i think i have this instead thanks your video helped alot
Thank you....
thank you for this
Make sure you are getting enough magnesium and iron.
Thank u for making this video,I too have fibromyalgia tooo!!much love ❤
I have onset early arthritis got diagnosed but I think I got fibromyalgia too I have pain all over my body sometimes my first place I feel pain was my neck I also have brain Avm and get fatigue,migraine since 2011 I am now 34
Hi sister I’ve been living with Arthritis 😰…for more than 5years now but I got rid of it naturally after using dr Omo herbal medicine his channel youtube.com/@dromocure
I am almost 100% sure I have fibromyalgia and chronic fatigue although I haven't been diagnosed yet but I've been doing extra research and I started watching videos of other women struggling with the same problems. I FEEL YOUR PAIN! I've been feeling it every day for as long as I can remember and although I have been transitioning to a healthy lifestyle it still worsens over time. I'm 24 and I remember being in pain all the time in high school, always tired, always depressed and I knew it wasn't normal. I felt like an old, sick, dying person but I was just a teenager. It feels HORRIBLE that no one understands. Everyone thinks you're just a whiny bitch who doesn't like to be happy or have fun with other people and the guilt and confusion just makes it so much more painful. Thank you for sharing this video. We are not alone. I am going to go to get an exam done to get my results and I am going to start taking Cannabis oil to try and reverse the disease. Have you ever tried it or would you try to use CBD (Cannabis) oil to treat your disease?
I am sorry that you still have no diagnose for your problems, and that you too, had to go through this at a young age! :( The first step to feeling better about it is definitely to get a diagnose, so I think you're doing the right thing about getting examined! Cannabis is not legal where I live, so I think it's not something a doctor would recommend to you in the first hand. I am not sure if it's used in medical purposes either, it's not very popular here yet I think. :/ But when you do start taking it, I am very interested in hearing about your results! if it makes you feel better? Let me know okay!
ive been going through this since I was 12. my first symptoms was mitral valve prolapse gerd and extreme back pain n sensitivity to the touch. ive been told time after time there is nothing wrong with me. blood test after test negative. ive lost so many jobs. I didnt get diagnosed until I was 27. I have crying spells all the time. everything is depressing. I cant eat I cant sleep. I cant go n e where because I always feel sick. I feel like im not normal so I completely understand where u r coming from and what ur going through. stay strong baby girl. it just makes u feel better knowing u have a diagnosis..
5 years. Lucky you. I have been 32 years before I was diagnosed. However, the doctors on the UK are not interested.
Hi sister I’ve been living with Fibromyalgia 😰…for more than 5years now but I got rid of it naturally after using dr Omo herbal medicine his channel youtube.com/@dromocure
I know this is a late comment so I hope ppl see it. You can all get better like I am doing reverse therapy.there's a few clips on UA-cam so plz check it out. Stop treating symptoms and treat the root cause, you can heal yourselves xxxx
lol, funny you mentioning Dr House. I've often wished I could see someone like him as he's determined to get to the bottom of mysterious illnesses unlike actual doctors who give up after 3 minutes of investigation..🙄
I'm sorry about doctor not believing you. It very painful to have people that are suppose to help you make you feel band about pain that you have no idea where it's coming from . I wish you the best Mind, Body and Soul.
I was diagnosed last August after 3 years of suffering! I shared my story on my channel too! Hopefully we can raise awareness for this condition and find a cure
I am 24. I also had really bad "growing pains" since I was 12. I've always suffered from fatigue and anxiety. little by little more symptoms appeared, constantly dismissed and referred by doctors. I was made to feel crazy. I thought maybe if I got psychological help to be happier, my body would also get better if it was all in my head. It didn't. doctor's in the US tell me that I also should just live with it. that it wasn't THAT BAD. my symptoms weren't connected because as you know, there are so many things linked to fibromyalgia. I got to the point after I had my son at 20 years old that I couldn't hold him. I felt like I was going to constantly drop him because my arms were so heavy with nerve pain and the pressure of his little feet standing on my legs made me break down in tears from pain. I didn't see a doctor until a year ago that actually helped me. I spent thousands of dollars on specialists and therapies over the past year. diagnosed with fibromyalgia April 2016. I've lost family and friends and most of my sanity. this year I am finally attending university for the first time in my life and working. my son is now 4 years old and he is the light of my life. I wouldn't be able to handle this condition without him.
thank you for sharing your story, I hope you can find a way to ease your symptoms. My mom has fibromyalgia, she was often told that she was fine, that she was making things up, some doctor even told her she had bone cancer. Finally someone diagnosed her with fibromyalgia, now I'm going through the same process of getting myself tested for different things and ending up with normal results but every day I am more convinced that I may have fibro too. It is just so difficult for a young person to not be able to enjoy and participate in life as we would like. Drop me a message anytime, greetings from Mexico :)
Thank you for this video, I'm going through a very similar situation
I was diagnosed with fibromyalgia in 2011 and it has gotten worse it does keep you homebound at times and the chronic fatigue is awful as the pain is and you never know when you're going to have a flare up and you can't get out of bed and I lost my job because of it I miss so much work and I work for that company for 6 years but like I said each year has gotten worse I hate it and now I have a lymph node on the side of my neck that is swollen and I have a lot of the symptoms of Hodgkin's lymphoma and I need to see a doctor on that now but I tell myself God's will be done and I pray everyday and I take medications so good luck to all of you out there I'm praying for you and have a blessed day
Medical shame is inexcusable!
So sorry you have suffered so badly .
Great video, I was diagnosed just a few weeks ago after 5 years in constant pain, It's a great idea to support each other, as like you said there is a lot we don't know about it. I have traced mine back 5 years to when I was put in an induced coma for bacterial pneumonia, Thankfull after dozens of dr's I got very lucky and went to see a dr who just turned out to be my hero, there is no cure, but we can try and do the best we can. Never ever feel guilty if you have to cancel plans with people, if they love you they will understand. xxx
Thank you for what you wrote... I'm crying now reading this. I'm fed up after few years of chronic pain (it is not first pain in my life) and I feel guilty and shamed, that is my fault. I started to looking for the reason of my pain and everything looks like fibromyalgia but my dr (it is very usefull) try to explain everything using depression. It's frustrating and annoying cos' I know my body very well and I am able to distinguish diffrent sort of pain. I'm worry of wrong diagnosis. What should I do if I'm feeling like wrong diagnosed? I'm living in London, UK. Thank you for any advice. All the best! Iwona
Yvonne B get a second opinion and even a third if necessary until you find your right doctor
@@yvonneb7932 Mine took years to diagnose because I almost believed the doctors that it was in my head, plus I was being a typical male trying to ignore it because men are strong and dont let pain stop them from doing things. until I started hitting the wall and could barely function from pushing too hard.
Thankfully I just found an awesome rheumatologist who diagnosed it as fibro as I have nearly every symptom I have read about since getting the diagnosis. I had heard about it before but never really looked into it. Ive started palexia but tbh I havent noticed much difference maybe only just taken the edge off.
I cant believe my first rheumatologist even kinda made me think it was partly in my head and was reluctant to diagnose me with chronic pain. I bet if someone asked her she wouldnt believe in fibro.
Josephine hwaiting! I really feel for you... and I get so mad with at the Swedish health care! Damn, why don't they want to help people and make them feel better? Why do they have to question everything we as patients feel? It pisses me off! I've had my troubles with them too and finally (after questioning my body, feelings and sanity) I just gave up, thankfully I don't have to handle physical pain like you. But you will be fine because you are a strong woman, I know (cause I'm old and wise ;) )
Hello! this is Eileen in Belfast N.Ireland. I'm very interested in your story(I don't have ur first name) but I think I have similar to your symptoms.
I feel just like you said ...when I get myself out of the bed with a lot of effort it dos'nt feel like I had much rest. Then it's like torture everything I do from then on until lunch time. Then it gets a little worse again coming up to bed time. I've had steroids prescribed a year or two ago but they're not the answer because it all returned a month or two ago. Now I've decided to go on the green juice diet program for a few weeks starting from tomorrow 23rd May. My name is Eileen from N. Ireland (Belfast). We could keep in touch. All the very best for your future. ⭐️
Great message, thank u
I know this is a bit old, but I just want to say that it takes a lot of guts to speak out about this illness. I was diagnosed about 2 years ago. At the time, I struggled with a lot of the same issues from doctors that you had. Now I know that my illness is a crossover illness from an autoimmune condition. But in the beginning it was really tough. The pain is enough to make anyone feel isolated. My advice is to take the time to find your triggers. Modern medication can only do so much, and unfortunately there is no cure. Don't keep it bottled up girl, the stress makes it so much worse. Open up, there is no judgement.