Thank you so much for your heartfelt message. It means the world to me. I'm sending you a big virtual hug right back! Sometimes, just knowing someone cares and understands makes all the difference. Take care, and thank you for your support! 💖🌟
❤ still here! Wow, those MRI results are crazy! I know what you mean about finally having validation that where you are feeling pain shows up on scans and tests. But that is scary as you said because it shows tissue damage. While some damage cannot be reversed, you are doing a great job with figuring out how to prevent future damage by taking the proper medication and doing exercises and things that help preserve the spine while the meds keep the disease quiet! And although some damage that may be causing some of your pain cannot be reversed, focusing on keeping inflammation as low as possible can still help to reduce a lot of pain and symptoms. You've got this! ❤ Sending you so much love and healing! 🙏
It’s such a rollercoaster. Those MRI results were definitely a mixed bag, validation but also scary. I’m trying to focus on what you said about preventing future damage and keeping inflammation down. Knowledge is power and I'm trying to find a physio that has experience with this condition.🙏❤️ There is also early degenerative disc disease and I don't know why this is happening. It doesn't seem to be related to AS. I still have many questions unanswered and it's hard to get doctors to explain. But the search continues....
@@tt_looking_glass I have DDD too. Dehydrated discs, low disc height, bone-on-bone at L5-S1 and herniation/ bulge at C5-C6 that comes and goes. I always thought DDD was mostly normal wear and tear of the spine if we have poor posture/ scoliosis, which i have a little bit of. 🤷♀️ I was also in 2 car accidents so maybe they contributed. Hang in there!! I think its a great idea to find professionals who have experience with the condition and seek out youtube videos, which im sure you've done already as well, of people who have figured out how to manage the condition. Like i said, you can do it! You've got this! Knowledge IS power. Never stop researching and learning. 😊
It's amazing how resilient we can be despite these challenges. I agree, finding professionals who understand our condition and seeking out helpful resources can make a huge difference. Knowledge truly is power, and I'll definitely keep researching and learning.
I can so relate. I haven’t been comfortable sitting in a regular chair for years. I have ddd but a previous g.p. thought I had a.s.. My spine has never fused so rheumatologists pretty much laughed me out of their office. I am hla B27 positive , I have eye trouble and have had 4 back surgeries. Crazy pain and wide spread neuropathy . I’ve been referred for Ketamine but cannot afford it. I am not far from Toronto but haven’t found a clinic tha doesn’t charge 750 dollars per infusion. Your back sounds terrible. Similar to mine. There is new research that fibro myalgia can be seen in brain imaging. So it likely originates in the brain. It’s on you tube.
Excuse me you're light years ahead. Tell neurologist the cyst can be at any level confirmed S1 doesn't mean it isn't other places. If treatment with both procedures chill everything. That's confirmation in a way. Imagine a world without lower back or the truly hideous bra line pain. You're going to write the book on treatment in Canada
I'm so sorry you are going through this. I've been having back pain that isn't fibro , either! Of course standing all day doing hair is probably compressing my spine . I'm also in a nice good ole brain fog.. Feel better ! Here's a heart.
Thank you so much for your kind words. I'm sorry to hear about your back pain, standing all day doing hair must be really hard on your back. That brain fog is no joke either; it can make everything feel even more challenging. It means a lot to have your support, and I hope you find some relief too. Take care of yourself and maybe try to sneak in some breaks when you can.
Search labs says yes . Spontaneous cerebral spinal leak syndrome can cause temporary blindness. Never heard of uvitis. Csf leaks are what powers the cyst largely.
❤ so brave Daniella, so proud of you to be able to do this video. I am so sorry that you have received such a hard diagnosis and actually seeing your spine. It really is a shock for you. I think we all react in different ways but denial is very common certainly with me! All we can do is live day by day. I am in UK and also am blessed to be on the NHS but waiting for scans and even getting hold of the rheumatologists secretary is impossible. No doctors seem to care what we are going through and they pass the buck on to other specialists. Praying that you are filled with inner strength and most of all peace that will restore you and refresh you. Lots of love and blessings to you and your family.😊
Hi Amanda! 💖 Thank you so much for your kind words and support. It's definitely been a tough journey. You're so right, denial is such a common reaction, and it's something we all deal with in our own ways. I'm really sorry to hear about the challenges you're facing with the NHS. Waiting for scans and trying to get in touch with specialists is so frustrating, especially when we are experiencing symptoms. Your prayers and kind thoughts mean the world to me. Sending lots of love and blessings your way as well. 😊❤️
I feel like your rheumatologist was being very finicky about ordering only the SI MRI. My GP ordered an MRI of the entire spine fro C to L. Why not do the whole spine while you’re in the machine anyway! I’m in Ontario. Our healthcare is only there for emergencies now, it’s awful especially since COVID.
Your experience really resonates with how I’m feeling about the situation. If you don't mind me asking, where in Ontario are you? It’s always interesting to connect with others in the same region, especially when we’re dealing with similar challenges.
You make me not feel so alone in this, thankyou!!!I have almost same story. Dec I was bed ridden for 2 months. Have all same except migraines. My bone spurs on xray looks like long sharp thorns. I have all the same back stuff 5 herniated disks, etc. I almost gasp when they ask me where the pain is???? I really appreciate this video. I can not get around. You are very beautiful(not weird) have kids your age!
Your comment means so much to me, thank you! I’m really glad that sharing my story makes you feel less alone. It sounds like you’ve been through so much, and I totally get the frustration when dealing with all those symptoms. Being bedridden for two months must have been incredibly tough. I totally get that feeling when they ask where the pain is - it’s everywhere! Thank you for your kind words. It’s really comforting to know we’re in this together. We’ve got this! 💖
I can so relate. I haven’t been comfortable sitting in a regular chair for years. I have ddd but a previous g.p. thought I had a.s.. My spine has never fused so rheumatologists pretty much laughed me out of their office. I am hla B27 positive , I have eye trouble and have had 4 back surgeries. Crazy pain and wide spread neuropathy . I’ve been referred for Ketamine but cannot afford it. I am not far from Toronto but haven’t found a clinic tha doesn’t charge 750 dollars per infusion. Your back sounds terrible. Similar to mine.
I’m really sorry to hear about all you’re going through. Chronic pain and all those surgeries is such a tough road. I totally get the frustration with finding affordable treatment, it's a constant battle. I wish more options were accessible to everyone who needs them. Have you looked into Centenary Pain Clinic in Scarborough? With a referral, OHIP covers the infusions there, which might be a big help. Hang in there, and know you're not alone in this. Take care and keep reaching out, support makes a world of difference.
It’s not unusual for people who have fibromyalgia to have some other illnesses. The question is, what came first, the fibromyalgia or the other symptoms followed by fibromyalgia? With my fibromyalgia, every new pain I have blends in with the fibromyalgia. What you have is definitely a difficult thing to deal with. Sorry to hear you have another problem to deal with. For me, my doctor got to the point and said: "you have end-stage arthritis in your lower back, so basically it’s messed up” 🤪
You bring up such an interesting point about the chicken-or-egg scenario with fibromyalgia and other illnesses. It's like, which one started this whole rollercoaster, right? I totally get what you mean about new pains just blending into the fibromyalgia symphony. It's like trying to pick out a single instrument in a loud, chaotic orchestra. I'm really sorry to hear about your arthritis diagnosis. Sending you lots of strength. Keep sharing, your perspective is so valuable, and it's a comfort knowing we’re not alone in this journey.
sounds like my MRI. Did the doctor discuss it with you or are you just interpreting the report? They told me this is normal findings for a 50 year old woman. We need to think of discs the same as grey hair. It doesn't harm us, it's just a normal process of ageing. Everyone has stenosis and everyone has DDD. I would wait for either your neurologist or a spine surgeon(b/c they read these all day - I'm not saying you need surgery) to read the MRIs. Plus, some MRIs are over read. I had 1 that said 4 things wrong and another that didn't mention them. When I asked the surgeon he said they were so minor the 2nd person probably found them insignificant. Reading that 1st report I was so scared. The second wasn't nearly as bad. Don't be scared yet, this pain can still be from just the fibromyalgia. Do you have numbness in your limbs? Do you have shooting pains?
I did discuss the MRI with my family doctor, but not with my rheumatologist yet. She explained pretty much exactly what you just said-that it’s a normal part of aging for a lot of people. However, she also mentioned that my spine is a lot more advanced for my age, like I have the spine of an 80-year-old. Within the context of my chronic back pain, it makes sense. I do believe that whatever pain the issues on my spine cause is amplified because of the fibromyalgia. I was diagnosed with Ankylosing Spondylitis wich cause back pain, Fibromyalgia causes back pain, DDD causes back
Thank you so much for your sweet words and support. ❤️ It really does suck, and it’s so frustrating how the healthcare system is so slow. It is a lot to process, coming to terms with a new diagnosis and medications but I’m just trying to take it one step at a time and figure out what I can do for myself without the medical system.
💜 Thank you for sharing! Anytime I need to lift my spirits & detach from own issues, I watch your videos & you always cheer me up! You always have a smile on your face & are always looking for solutions instead of complaining about your issues. I appreciate you being so open & allowing us on your journey!
Thank you so much. It means the world to me to hear that my videos can lift your spirits and bring a bit of cheer. I'm so glad to have you along on this journey, and your support and kind words keep me going. We're all in this together, looking for solutions and finding strength in each other. Take care and keep smiling! 😊🌟
❤ This video wasn't boring at all. I'm a new subscriber and have been binge watching all your videos in the last week. I'm so sorry you're going through so much, but you're such a fighter and such an inspiration. I've recently been diagnosed with Fibromyalgia and your videos have helped me in so many ways. From understanding what Fibro is, to advice and tips on how to manage on a daily basis and even flare ups. I can't thank you enough and I no longer feel alone in this battle. Sending you all the love, support and gentle hugs from the UK!
Welcome to the channel! I’m so glad you found the videos helpful and not boring. It means a lot to hear that they’ve made a difference for you. Fibromyalgia can feel so isolating, but knowing we’re not alone makes it a bit easier to handle. I’m really sorry about your diagnosis, but it’s great to hear that you’re finding ways to manage. We’re all fighters in this together. Sending you lots of love, support, and gentle hugs right back from across the pond! 💜😊
My heart goes out to you and all others who are affected by chronic illness. This is the second time I’ve watched this video from start to finish ❤ The first time I think I was having a brain fog because I meant to reply but I’m going through my own flare at this time. Watching this again when I’m feeling more alert, I feel so bad about your situation. I have always felt that it must be great to live in a country with universal health care, whereas in the USA millions are still not covered in spite of the passage of the Affordable Care Act. (I don’t like the term ObamaCare because it has been used as a political negative word.). I really am praying that you can get treatment very soon, and I think that the sooner you can get it the better off you will be. I struggled with undiagnosed AS for nearly twenty years, but once my ophthalmologist and rheumatologist got together I almost breezed right through and was approved for treatment with Enbrel. It was a real blessing, because I think less than a month passed between the time I started getting uveitis and my first dose of Enbrel. I thought nothing of it at the time, but now I know how fortunate I was to be getting first class medication in record time. The first time I watched this I wasn’t very attuned to your words and especially the look on your face, but the second time I could see from the start that you had some very bad news from your imaging tests. This must be a very heavy cross to bear, knowing that you could be getting some relief but getting caught up in a lot of red tape. I sincerely hope and pray that you can see the rheumatologist soon. Keep trying to get an appointment, who knows, maybe there will be a cancellation that will make room for you to see the doctor? Jesus told a story of a woman who had a complaint before a judge, the judge didn’t care one little bit about her situation, but she kept on petitioning the judge until he finally found in favor of her complaint. You can be like that woman in the parable and keep your eye focused on getting around the red tape. I know from your channel how tough you are to have lived with all this pain for all those years. I know just how you felt at the holidays when you were in such pain you were holding back tears. I’ve been through that myself, just holding onto something at my job with my eyes screwed shut from the pain and then having my boss tell me to help someone to put something heavy into their car. We do what we have to do, often because others are counting on us. I don’t know what your religious beliefs are, but I think that when we do for others in spite of the pain, we are storing up treasure in Heaven. I love the Lord, but I fear him too, and I would rather do my suffering in this life than the next. I know that I’ve rambled on here, but I want you to know that I didn’t find your video to be overly long or boring. Far, far from it. You are clearly very intelligent and involved with your own diagnosis and treatment. You handled a lot of medical terminology quite well, and it was a detailed and thorough review of what came up on your imaging. And to think that you did it all off the top of your head, without any preparation or bullet points! You were fantastic, I know from all the hearts that I see in the comments. Stay strong, Daniela, and thank you for providing a forum for people with chronic pain to share and help one another. May God bless you and your dear ones, and stay strong, not only for yourself, but for all your friends around the world!
Your heartfelt message truly touched me. Thank you so much for your kind words and for watching the video twice-that means a lot to me. Brain fog can make it hard to focus, and I’m glad you found the video helpful the second time around. I completely understand the challenges of living with a chronic illness, especially when dealing with healthcare systems. It’s frustrating to know that treatment is out there but caught up in red tape. Your experience with Enbrel is inspiring and gives me hope. I'm so glad your ophthalmologist and rheumatologist were able to work together to get you the treatment you needed quickly. The parable you mentioned is a wonderful reminder to stay persistent. I’ll keep pushing to get that appointment and not give up. Your story of working through pain and still helping others resonates deeply. We do what we have to, often because we care so much for those around us. Thank you for your encouraging words about the video. I try to be thorough and clear, and it’s rewarding to know that it’s appreciated. This community is incredibly supportive, and I’m grateful to be a part of it. Stay strong as well, and thank you for your prayers and blessings. Together, we can continue to support each other through these tough times. May God bless you and your loved ones too!
Thanks so much for the kind words! I'm glad to hear you're enjoying the videos. It really helps knowing we're on similar journeys and can support each other. I know how frustrating it can be, but having this community makes it a bit easier. Wishing you lots of luck and healing as well. We’ve got this! 😊✨ I'll keep sharing, and I look forward to having you along for the ride. Take care!
Thank you so much for the love and those sweet words, Rebecca! ❤️ I have to say, living with costochondritis is no joke either. It’s tough, and you’re doing an amazing job handling it. We all have our own battles, and you’re just as much of a superhero in yours. Let’s keep lifting each other up. We’ve got this! 💪❤️
❤What a heartbreaking experience you have had, and such a serious turn of events to your health! I'm sorry you are going through this. Much strength to you on this continuing journey you have.
Thank you so much for your heartfelt message. It’s been a tough ride, but hearing kind words from people like you makes it a bit easier to keep pushing forward. I’m sending you lots of strength too, we’re all on this journey together, and supporting each other makes a big difference. Your compassion means a lot to me. Let's keep holding each other up. Your fellow traveller on this journey. ♥️
🩵❤❤❤ I wanted to be here when you released this video 3 days ago, but I am going through something new lately & it's knocking me out. Soo, this one made me cry as well! 😭 It's ASTONISHING to me how incredibly well you can describe how these symptoms affect you! I'm also surprised by your description of your MRI results - we have nearly identical issues going on - are we separated at birth?? lol I don't know if you'll see this or not, so I won't get too involved with details, but I have serious neck & lower back pain - I've had 3 lumbar injections for my back. I've done physical therapy for both my neck & back - (it was very minimally helpful), I've had a slew of blood work, MRI's, X-rays, Sonograms, medication and I'm STILL in a lot of pain. Day to day I walk with a cane, long distances I have to have a wheelchair. And through all of this I still believe that something else is going on, but I can't get answers! I honestly feel like doctors are just ignoring me and/or gaslighting me. 🤷🏽♀️ I hope you can get answers for yourself and keep posting, I love your videos! Blessings and extra soft hugs! -Your Sister in Pain ✌🏻🩵
Sending you a huge, gentle hug right now. ❤️ I'm so sorry to hear you're dealing with something new and tough lately. I totally understand how it knocks you out, it's so draining. Your comment really hit home for me. I’m always blown away by how connected we all are through these shared experiences. It’s crazy how our MRI results are nearly identical. We must be chronic illness twin syndrome! 😅 I can relate to your struggles with neck and lower back pain so much, the endless appointments, tests, and treatments that feel like they lead nowhere. It's comforting to know we’re not alone in this, even though it's so tough. I make it a point to read and reply to all comments because each one matters to me, and connecting with you all is such a source of strength. Sometimes I might miss a comment if it’s a reply to another comment, but I do my best to stay connected. Thank you for sharing your story and for the kind words about the videos. Knowing that they resonate with you and others keeps me going. Let's keep supporting each other through this journey. We’re stronger together. Blessings and extra soft hugs right back at you! Love that you refer to yourself as a sister in pain. ♥️
❤❤ I'm sorry that you had to go through that, some doctors take way too long to treat someone, especially if there are no immediate threats. I know what it is like to feel disregarded just because the test results say you're not dying. I hope you get answers soon and I hope the doctors take you more seriously, because I know their indifference only makes it worse...
Thank you so much for your empathy. It’s so frustrating when doctors take forever to address our concerns, especially when we’re not seen as an immediate priority. I know exactly how it feels to be disregarded just because the tests say one thing while our bodies scream another. I hope we both get the answers and care we deserve soon. Your support means the world to me. Take care! 🌸
Thank you for documenting your journey. It has helped me understand a lot more about my Fibro symptoms. I'm newly diagnosed with fibro this year. I'm in the US. I have tarsal tunnel disease and chronic ankle instability which has caused major nerve damage in my feet, ankles and back. I've had that for about 25 years. My RA specialist posited that since I already had chronic moderate to severe pain in the feet/ankles and then went through a period of extreme stress (as a US school teacher... can you say gun violence...) my brain scrambled the pain signals and created fibromyalgia for me. I'm wondering if you had back pain before fibro? I'm wondering if anyone else has had chronic pain before fibro that has developed into further widespread pain and then other fibro symptoms?
Hey Jennifer! Thank you so much for sharing your story and for the kind words. I'm really glad my journey has helped you understand your Fibro symptoms better. It sounds like you've been through a lot, especially with tarsal tunnel disease and chronic ankle instability - 25 years of that kind of pain is no joke. I can definitely relate to what your RA specialist mentioned. I think it's not uncommon for chronic pain in one area to eventually spread and morph into fibromyalgia, especially after extreme stress. Being a school teacher and dealing with the stress of gun violence must be incredibly challenging. Thank you for sharing, and keep reaching out - we're all here to support each other. 💜
@@tt_looking_glass I did not know that prior pain could morph into a wide spread pain condition. It took so long for my foot pain to be recognized and treated that I feel like the medical establishment in the US really let me down. I was treated like my pain didn't matter. Since I was treated like that as a young woman, I feel that I push harder now as a middle aged woman to make my voice heard. I sense that same feeling of shouting into the void in a lot of people I've met with fibromyalgia. Its like society just ignores pain and then you're treated like a criminal (at least in the US) for wanting proper pain control options. I have lyrica which works for me so far but for acute symptoms I have nothing except extra strength NSAIDS. I don't like it. I want to see a change in the way these things are treated.
Here in Turkey, I had private insurance when I worked and they love sending you for imaging (money money money) and then hand you the results before seeing the specialist. All those words ... I remember seeing them for the first time, I was overwhelmed and shocked. Thankfully my specialist explained which parts of the report I need to take serious and that everything and everything is related to symptoms. You can many herniated discs for example and not feel any pain. Or you can have the tiniest of protrusion and you can be in hell. My advice is to never read or try to interrupt an imaging report because it will increase your pain, give you serious unnecessary anxiety etc. Many of the things sadly come with age - degenerative simply means we are getting older. But reading it there, on paper, you can feel more pain, so don't read the reports! 😍
Yes, you are absolutely right. The words can be scary, and I understand the mind-body connection. When you believe something is bad, it will be bad. But the reason I did this MRI was because of the amount of pain I have been in. Many times, it's so debilitating that it leaves me on the floor, breathless, and unable to move. So, it just made sense. I hope this will help me manage better and support my back and health in the best way I can. Your advice is spot on-never read or try to interpret an imaging report on your own. It just ramps up the anxiety and pain unnecessarily. Degenerative changes often mean we're getting older, but what was explained to me is that it is too advanced for my age. So maybe it's like I have the back of a 90-year-old, which explains a lot because I often feel that way. Lol!
its the same in iran, you speak a word about pain, youre sent for whatever test is related to it,the same day,or just in a couple of days. its not that expensive though, not compared to cost of living atleast....soooo, to me thats actually perfect. i would never wanna wait for so long for a just a test
its the same in iran, you speak a word about pain, youre sent for whatever test is related to it,the same day,or just in a couple of days. its not that expensive though, not compared to cost of living atleast....soooo, to me thats actually perfect. i would never wanna wait for so long for a just a test
@@annipsy2185 Greetings to Iran! Just curious, is illness also semi a competition in society? Here in Turkiye it is. You visit friends, family or even chatting to strangers in hospital waiting rooms, people LOVE to talk about their ailments. It is all 'I have this, I have that' 'oh you have that, but I have this'. As someone with a lot of this and that (!), I prefer to stay quiet, that's why I was curious. ❤
Daniela I am so very sorry you are going through this. Please know my heart is with you! So much to process. Life sometimes makes no sense at all. Sending many hugs and well wishes to you in hopes that relief will come for you! Thank you for sharing ❤❤ Geri
Thank you so much for your kind words and support, Geri. It really means a lot to me. You're right, sometimes life just doesn’t make any sense, and it can be so overwhelming to process everything. Sharing my journey helps me feel less alone, and knowing I have such a supportive community makes a world of difference. Hugs and lots of love. Thank you for being here and for your wonderful message. ❤️❤️
@@tt_looking_glass I hope you are getting some relief now, Daniela. It seems so many are going through health struggles and I agree with you that supporting each other and being encouraging does help us to keep going. I hope you are having many more good days than tough days. Hugs & Love to you!! 💝💞 Geri
Thank you so much, Geri. It really does help to have a community where we can encourage each other through our health struggles. I'm hoping for many more good days for all of us. Hugs and love to you too!
❤❤❤❤ Thank you. I understand your frustration with several specialists. I am in the US and even though our medical system is different, getting appointments when you are chronic is difficult. Pain relief is even harder 😢. Pain medication is the great evil here. Depression is so high with chronic illness. I have learned that misery really does not love company. I have resorted to staying in my apartment alone where I can control the light, sound, no strong odors, the temperature and I don’t have to be nice if I don’t feel nice. I go out to see doctors if I can’t do a televisit, to pick up groceries or medication. That is what my life is now. It is hard for others to understand, but being in pain all the time is too.
It's incredibly tough navigating the medical system and managing chronic pain, especially when it feels like the system isn't set up to support us. Your strategy of creating a controlled environment in your apartment makes a lot of sense, and it's important to have that safe space. But this can be so isolating. Please know you're not alone. Our community here understands and supports you. Sending you strength and solidarity. 💖
Hi Daniela 👋 sorry to hear your MRI was not good news 😞 glad that you persisted to get some explanation for your higher levels of pain. I've also had fibro since I was 19 ( I'm now 46 !!) and have had long-standing chronic to severe back pain. Having had diagnostic spine scans since the early days, I've always known I have Scheuermann's Disease. The diagnostic criteria are 3 or more wedged vertebrae, at 5 degrees or more. It causes a 'rounded back' and with time, being so out of alignment, causes early degenerative disc disease in other areas of the spine.. cervical, thoracic and lumbar. It may be worth checking out, given the MRI showing multiple anterior wedging of the vertebrae. Best of luck 💜💜💜
Thanks so much for your kind words. It’s been a tough ride, but I'm glad I persisted to get some answers for my pain. It’s comforting to know I’m not alone in this. It sounds like you’ve been through a lot with fibro and chronic back pain since a young age. Scheuermann's Disease sounds challenging, I appreciate you sharing your experience and the diagnostic criteria - I’ll definitely look into that given the MRI results. Which specialist would normally diagnose this disease? Thanks again, and best of luck to you too.
Hmm... now I think about it, there's no mention of "endplate irregularity" but here is a link to the Scheuermann's Disease page. Under Resources is a global Doctor Database, as many doctors aren't familiar with it. It's basically Scoliosis but instead of side-to-side, it's a front-to-back curve. Either way, hopefully you can find some answers soon. Yes, I've had cervical disc replacement and thoracic spinal fusion from T4-L3 and had Lumbar MRI a week and a half ago as that's not looking great either! Thanks for sharing your experiences, makes me feel not so alone too x
Thank you for sharing this information and the link to the Scheuermann's Disease page. I'll definitely check out the global Doctor Database-it's so helpful to have resources when many doctors aren't familiar with it. I'm sorry to hear about your extensive spinal surgeries and ongoing challenges. Thank you for sharing your experiences too. Wishing you all the best and hoping you find some answers and relief soon.
OMG!! I hate to say I know how you feel, only because I don't want to diminish your pain in any way. But what you you just read was so similar to my MRI reading I received at the end of April of this year for my cervical spine and the CT-scan from my lumbar spine last fall before the last fall. I have 4 levels of bilateral stenosis (compression) in the cervical spine and 2 levels of central stenosis in the cervical spine with new bone growth that was not there in March of 2023 when they did a bony fusion at C6/7 and removed 3 spikey osteophytes as well as a ton of scar tissue from the 2006 fusion where the scar tissue became adhesions and didn't stop growing causing twice the amount of time to do the surgery. I am now waiting for the surgical scheduler to call for the 3rd fusion and this time they are going to put stabilizing cables in from the back after they complete the fusion from the front. I am so extremely sorry you are facing this pain! I would not want anyone to feel this! Last night I laid in bed for about three hours with fiery hot nerve pain in the right side of my face unable to do anything but try to hold still so the pain would not increase. I want to be able to live a life that does not require me to stay alone in this bed. I really hope you get the meds you need to help you. I don't know what is next after this surgery for me, But I hope I will be able to laugh more with out trying to hold back out of fear of pain.
Wow, it sounds like you’ve been through so much. I can’t even imagine how tough all those surgeries and the constant pain must be. It’s awful to have to deal with fiery nerve pain like that. I really hope you get that call soon and the next surgery brings some relief. I totally understand wanting to live a life without being stuck in bed. I’m rooting for you to get there. ake care, and keep us posted on how you're doing. 💜
@@tt_looking_glass 🧡🧡 I got the call yesterday and I’m having surgery Monday 07/01/2024 My heart goes out to you!! I am sending all the good juju in hopes your ophthalmologist agrees with your needed medication. I also want to tell you not every video or vlog or whatever it’s called needs to be dynamic or inspirational. You have created a community of people that understand your experiences. And they are interested in your journey because they relate. Especially to the everyday common struggles. Just remember these “followers” are interested in you… exactly how you are. And imho, if they’re not oh well! Forget about em! Lol
Thank you so much for your kind words and support! 🧡🧡 I'm sending you all the positive vibes for a smooth recovery from your surgery yesterday. Your encouragement means the world to me. It's so comforting to know that this community understands and relates to the everyday struggles. I'll keep your advice close to heart and continue sharing my journey as it is. Thank you for being such a wonderful part of this community! Take care and keep us posted on how you're doing. 💖
I believe all these systems and separate diagnosis are a syndrome of some sort. All the drs, here treat me like a drug seeker. It is very sad. They should see I have trouble with alot of medicines(part of fibro for some)Meanwhile I am in agony most of the time and then will have a flare! Ugh! Can not get the heart emoji to come up so*************those are hearts
I hear you, and it's so frustrating when doctors don't understand the real pain we're in. Dealing with multiple issues and medication sensitivities is such a challenge. It feels like you have no options for relief. I'm sorry you're in so much agony and then have to deal with flares on top of it all. It's not fair, and it's definitely not easy. Just know that there are people out here who get it and who are rooting for you. Here are some hearts for you. lol!! ♥️♥️♥️♥️♥️♥️♥️
I'm sorry this is happening. Honestly this is why i go the homeopathic direction to treat my fibro. I am so disillusioned by the medical fields. And the gaslighting that happens to those of us suffering with an invisible chronic illness. I hope you get what you need from your Doctors. Sending hugs
Thank you for your kind words and support. I totally understand your disillusionment with the medical field. Unfortunately, I've never had much luck with homeopathic treatments. I've tried so many alternative treatments and nothing ever helps. I'm so glad you have found it helpful to treat your Fibro. Sending you big hugs and lots of strength. Thanks for sharing your experience and for being part of this supportive community. Take care!
I'm early in my journey with Fibro but I find that doing both complimentary and regular medical treatments are a good combo for me. Acupuncture works well for me (15 weeks of it once a week) and I've upped my vitamin intake. I've had feet/ankle pain for years and exercise really is one of my coping mechanisms for pain and stiffness. My primary symptoms are more fog centered rather than pain though. But I'm beginning to understand that each person has a different set of symptoms.
@@jenniferkastilahn4210 It sounds like you're really taking a proactive approach to managing your fibro, which is so important. Combining complementary treatments with regular medical care can make such a difference. I’m glad acupuncture is helping, and that you’ve found exercise beneficial despite the pain. It’s interesting how fibro affects everyone so differently, foggy symptoms can be just as challenging as pain. Keep exploring what works best for you and know that sharing your journey helps others too. You're doing amazing! 🌟
Oh friend! How frustrating!!! This all sounds SO scary😢. That's so much info to process, and I understand the denial. It all DOES become so overwhelming. I can't imagine how overwhelmed you are right now. Girl, do we ever get a breapk?! 😂. And ❤ . The end. Hehe. I was wondering where you were! I'm keeping you in my prayers, Daniella. I got new stuff now too. Being screened for EDS. I'm in so much pain! Plus I'm not healing from my hysterectomy STILL. It was done February 14th! So sorry, had to vent too. But that's what we do. Support each other. Validate each other. Be compassionate to each other. So much love, my friend ❤💓❤️.
Oh wow, your message really hit home for me. It’s like we’re all navigating this endless maze of health issues, right? It does get so overwhelming, and the denial is real-I totally feel you on that. I’m so sorry to hear about the pain you're in and the slow healing from your hysterectomy. That’s a lot to handle all at once. Being screened for EDS on top of everything must feel like the universe is just piling it on. Vent away, this is exactly the place for it. We’re here to lift each other up and get through the tough times together. Thank you for your prayers and all the love, my friend. Sending you so much love and strength right back. We’re in this together, and we’ll keep supporting each other. ❤️
I’m sorry you’re dealing with another diagnosis. I hope you can begin treatment soon. I understand you not wanting to wait because you want the damage to stop. Hang in there, Daniela. I’m sending lots of love and prayers to you!! 💗🙏🙏🙏 I always wonder if I have this… I had a lot of back pain that got better with Remicade infusions for my Ulcerative Colitis. I never had the eye problem you’ve had. I’m so glad you didn’t lose your vision!! I know that must have been scary.
Thank you so much for your kind words and prayers, Debra! 💗🙏 It means a lot to me. I’m really hoping to start treatment soon, too. The waiting can be so tough when you just want the damage to stop. I’m glad to hear that Remicade infusions helped with your back pain! It's interesting how treatments for one condition can sometimes alleviate symptoms of another. AS is often associated with gut autoimmune disorders like Ulcerative Colitis, so it's not surprising that the Remicade helped. And yes, the eye problems were terrifying, but I'm so grateful I didn't lose my vision. It really puts things into perspective.
@@tt_looking_glassMy heart breaks for you Daniela watching your video this afternoon. I’m so very sorry for all the excruciating pain and frustration of waiting that you endure every single day. Have faith and trust in God. That is how I survive and have hope everyday in my illnesses healing journey. Sending lots of love, prayers and positive energy your way. 🙏🏻❤️🦋🌹🕊️
@lyndathompson6315 Thank you so much for your kind and heartfelt message. Your support means the world to me. Holding onto faith and trust in God is a powerful way to find hope and strength in our healing journeys. I truly appreciate the love, prayers, and positive energy you're sending my way. Sending lots of love and prayers to you as well. 🙏🏻❤️
Health care in general is going down hill unfortunately. I will leave it at that. 2012 I had a C6/7 fusion done because I had a herniated disc. I just woke up thinking I slept weird on my neck and would get better after a few days. That was August 15,2012 and took a couple of months to figure out I had a herniated disc. November 30th 2012 I had the surgery. It did fix the disc problem but shortly after that I was diagnosed with Fibromyalgia. I believe the trauma from the surgery triggered the Fibromyalgia. I was absolutely fine before my neck problem. I also had a bone spur lying right on the nerve. Nerve pain is like no other. I was begging for the surgery because I was in so much pain. I know what you have and believe it or not it is very common to have degenerative conditions of the spine. They can do things to make more room for your spinal cord so the nerves are not being crushed. I had to have surgery because it was bad. I would get more than one opinion about your MRI. PT is a must and there are certain exercises for each part of the spine. I know it’s overwhelming but there’s hope and yes Fibromyalgia does add to back pain problems!! I have severe back pain all the time 24/7 besides my whole body killing me. I wear a brace for my back and that helps. I also am on ice gel packs constantly. Heating pad sometimes just depends but ice packs really help with nerve pain. I’m on a muscle relaxer,Tylenol #3,valium. I used to be on more hardcore pain meds but I had to get off them. I understand the waiting game and when you’re in that much pain it’s beyond frustrating. I’m thankful to the Lord that you are getting some answers and it will get better. It’s one day at a time and I do a lot of praying for help especially with my mental state and I don’t have much people support. I live alone and am 58 and will be 13 years in August. I never get a break from the pain. It’s non-stop. Some are worse. I’m thankful that you do the videos. I watch them and they help me to know I’m not alone and other people are going through stuff too. I’m finding out more and more you have to make yourself keep moving unless it’s harmful to a particular part of your body. You will know that in time. I will always hurt so I have to adjust my mindset and realize that is part of it. I call them Victories!! I never know what a day will be like. There’s no consistency so hard to plan. I thank God whatever He helps me do everyday! I’m blessed because I understand suffering and pain and most people don’t. I’ve been given a gift and I’m not all caught up with myself and can be understanding and empathetic to others in a way I wasn’t before. I appreciate everything more than ever. People used to have to wait for everything. Technology has made waiting worse. Keep trying to get in sooner if you can. Keep seeking knocking etc. The journey continues…❤️🙏💐
Wow, thank you for sharing your story. You've been through so much, and your strength really shines through. Your journey from thinking you slept wrong to discovering a herniated disc and then dealing with fibromyalgia is intense. It’s frustrating when we’re desperate for relief and have to go through so much just to get answers. Nerve pain is indeed horrible, and it's a struggle that not everyone understands. I'm glad you're finding some ways to manage the pain, like ice packs and a brace, and it’s inspiring to hear how you keep moving forward despite it all. Your resilience and faith are incredible. It’s true , finding victories in our daily battles, no matter how small, can make a huge difference. Thank you for watching the videos and being part of this community. Knowing we're not alone makes a big difference. Keep taking it one day at a time, and remember, you’ve got people here who understand and support you. Sending you lots of strength and good vibes.
Thanks for the update! It must be a very difficult time for you! Sometimes I do feel like with anything pain related, doctors tend to have such a passive role both in public or private healthcare... Because it is not immediate life threatening, therefore we don't get checkups like many other diseases just get it as a norm... It is very frustrating when no one wants to listen or it always cost a lot of money, while the pain itself made us jobless... I am now scared to have kids as I don't want my future kids to suffer what I have been through, yet I also feel sorry to take away my partner's rights to have his own child as I know he will be a great father...
Thanks for sharing your story. It is incredibly frustrating when doctors take such a passive role with pain-related issues, and it feels like we have to fight so hard just to get the care we need. It’s tough when the pain itself affects our ability to work, and the costs just add to the stress. I too lost my job and the ability to make a decent income. I really feel you on the fear of having kids. It's a huge decision, and wanting to protect them from the pain you've experienced is completely understandable. Balancing that with your partner's desires is such a difficult situation. Remember, whatever decision you make will come from a place of love and thoughtfulness, and that’s what matters most. Sending you lots of strength and support. Hang in there, and take care of yourself. 💖
❤ I too have fibro and just recently found your channel. It really helps give me insight and makes me not feel so alone. Just last week finally got an MRI for my lumbar spine confirming disc degeneration, osteoarthritis, forminal stenosis and narrowing throughout pretty much the entire lumbar spine and into the upper sacral spine. I'm so sorry to hear you are dealing with this. Seems we're always fighting the healthcare system to be seen and heard. Keep pushing through, you are strong! You are an inspiration and a warrior.
Welcome to the channel, and thank you for your kind words! I'm so glad you're finding it helpful and that it makes you feel less alone. It's always comforting to connect with others who truly understand what we're going through. I'm sorry to hear about your recent MRI results, that’s a lot to take in. I totally understand. All the stuff in your back sounds very similar to what they found in mine. I understand the pain. It really does feel like we're constantly fighting the healthcare system just to be seen and heard. But you're right, we have to keep pushing through. Sending you lots of love and strength. Keep being the warrior that you are! 💖💪
❤ Oh Daniela I really feel for you. I’ve been watching your channel for a long time but never commented before. I have fibromyalgia too, diagnosed 2012 after the birth of my 3rd child. I know like you that there are other issues going on, but my doctor refuses to refer me back to rheumatology because I was seen by them and have fibromyalgia! It’s so darned frustrating. They can’t seem to accept that it’s possible to get other conditions on top. I truly hope your ophthalmologist is helpful in your battle for treatment ❤️
Thank you so much for your kind words and for watching my channel for so long. I'm sorry to hear about your struggles with fibromyalgia and the frustration with your doctor. It’s so challenging when they don’t acknowledge the possibility of having other conditions on top. I truly understand how frustrating that is. I hope your situation improves and that you get the referrals and treatment you need. Thank you for your support, and I’ll keep everyone updated on my battle for treatment. ❤️
I haven't seen you in the comments for a while! I was literally just thinking of you yesterday and wondering if you were still around. It's so nice to see you here again.
@@tt_looking_glass Hello Daniela…I haven’t missed any of your videos. I’ve been following your health plight thru all of its twists and turns! You’ve been thru so much already, yet you’re still learning something new about your body that you weren’t aware of a year or more ago…..I think you really do want to know everything that’s afflicting you. You need to get the “full picture” in order to better cope and your mind will become more at peace when you’ve done everything to the best of your abilities to gain a better understanding of your complex health conditions now in the 2nd half of your life….It’s like trying to put all the pieces of a puzzle together to be able to see the full picture…Some of the puzzle pieces don’t seem to fit….but eventually they will the closer you get to complete the puzzle…..I’m always hoping for the best for you and praying you’ll get your “piece of mind” with all your ailments! Thanks for asking ❤️ I’m doing/feeling so much better now than I was 2-3 years ago…….no big flares! 🤗 My pain has greatly decreased while stamina/quality of life has increased….Thankfully, I’m better able to help my elderly parents with their conditions, while taking better care of myself….for me, better rest, more outdoor activity, and improved gut/digestion helped my condition tremendously! I have less time to sit and watch a lot of YT videos now, but I will always watch your vids! You are very inspirational to your entire online family! You’re a true warrior! We are all routing for you to find peace and have the best quality of life you possibly can! 👍🏼
Thank you so much for your unwavering support and for following my journey so closely. It means a lot to me. You're absolutely right, understanding the full picture of my health conditions is crucial for finding peace and coping better. It does feel like putting together a complex puzzle, but with every piece that falls into place, I gain more clarity. I'm so glad to hear that you're feeling much better now than a few years ago, with fewer flares and improved quality of life. It's wonderful that you're able to take better care of yourself and help your elderly parents. Thank you for always watching my videos and for your kind words. Your encouragement and support is very apprecitated. We're all in this together, and knowing I have such a supportive online family keeps me going. Wishing you continued health and happiness! You're a true warrior too! 👍🏼❤️
@@tt_looking_glass you are most welcome!! I shared things on a channel I have been watching since 2020 just a second ago. I shared things I’ve not said out loud to anyone outside my family and therapists! I felt it was extremely important to do so, because that channel gave me a little bit of hope to get back to my spiritual side And you give me that hope too I feel like I have some things to share and I’m not sure how to, but I’ve done some huge breakthroughs in therapy. My surgery went really well, but even if I fall tomorrow feel like there are things that I have to share with people and it can just be the person next to me or it could be over that doesn’t matter. But I am going to figure out how to start a nonprofit in the state I live in to help people physically disabled. They do not have any type of developmental disability, and are not old enough to be a senior and young enough to be a minor. I want to help them, not have to struggle to learn the things I had to learn in order to survive and find ways to, be able to live. Most of the programs where I live are for people who are coming out of institutions or other things that I mentioned there’s not a lot of programs for people who become suddenly physically disabled and unable to care for themselves or work to support themselves. I don’t know how to do that, but I am just gonna keep putting it out there and maybe somebody will read this and have some information about how to start that part of the next chapter of my life. Maybe they can help me write it down in a book so other people can do it as well or, a manual or something or figure out what’s going on in their states or. I feel that the only way to live anymore be a community and that has to start in your heart and then in your home and then your neighborhood and then in your community and it grows from there. I feel most people really just want to feel they have community And they’re not alone I know that’s all I ever wanted and I didn’t have that and so now I’m going to create it big part of that give courage to start talking my truth and figuring out how to help people whether it’s from bed or mountain top. It doesn’t matter. I spent three years watching training videos for employees of the department of human services in my state that I live in because I didn’t know what was available to me and I was bored so I kept having to read them so I could remember them
Your message is incredibly inspiring and heartwarming. Thank you for sharing so openly. It’s amazing to hear about your breakthroughs in therapy and your successful surgery. Your determination to help others, especially those who are physically disabled, is truly amazing. Starting a nonprofit to support them sounds like a wonderful idea, and your experiences and insights will undoubtedly make a huge difference. The way you view community and the importance of supporting one another is so powerful. You’re right, community starts from the heart and grows outward. Your efforts to learn, share, and support others are already creating ripples of positive change. We’re all here cheering you on. Keep pushing forward and know that your efforts are deeply appreciated. You’re making a big difference in this world. Sending you lots of love and strength! 💪❤️🌟
Thank you so much for the healing love and light. It means a lot. Right now, I'm still waiting to see my rheumatologist. There are medications that can help, and I’m hoping my doctor will prescribe something that works for me. But, as always, there are side effects to consider, which can be tricky. Thanks for sticking with me to the end of the video and for your support. Sending you love and light back! 💖🌟
❤❤. Damn, they’ve really got you running in circles. It never occurred to me that I was lucky that I had a, dunno what you’d call it...back accident at 18, that’s when I found out I had spondylitis and ddd and was diagnosed with fibro 3 or so years later instead of the other way round. My GP’s have always been super helpful and so was my original rheumatologist, (the latest one not so much). My GP’s have always gone over the head of someone they don’t think is doing it right. It’s why we drive over an hour one way now to see them, we’ve moved, they’ve moved, we have plans in place if I can’t get there, so grateful to them. Anyways I hope today isn’t to bad for you xxx 🦘❤️
Cathie, It sounds like you’ve been on quite the journey with your health too. Having doctors who really listen and go above and beyond makes such a difference. Driving an hour to see them is a testament to how important it is to have the right care team. It’s amazing how you’ve managed to navigate all this and put plans in place for when things get tough. Thank you for sharing your story and your kind wishes. I hope today is treating you gently too. How do you usually manage on those long drives to your GP? 🦘❤️
❤ this video made me cry!!😢 Feeling sorry for the diagnosis and just want to give you big hug and support ❤
Thank you so much for your heartfelt message. It means the world to me. I'm sending you a big virtual hug right back! Sometimes, just knowing someone cares and understands makes all the difference.
Take care, and thank you for your support! 💖🌟
❤ still here! Wow, those MRI results are crazy! I know what you mean about finally having validation that where you are feeling pain shows up on scans and tests. But that is scary as you said because it shows tissue damage. While some damage cannot be reversed, you are doing a great job with figuring out how to prevent future damage by taking the proper medication and doing exercises and things that help preserve the spine while the meds keep the disease quiet! And although some damage that may be causing some of your pain cannot be reversed, focusing on keeping inflammation as low as possible can still help to reduce a lot of pain and symptoms. You've got this! ❤ Sending you so much love and healing! 🙏
It’s such a rollercoaster. Those MRI results were definitely a mixed bag, validation but also scary. I’m trying to focus on what you said about preventing future damage and keeping inflammation down. Knowledge is power and I'm trying to find a physio that has experience with this condition.🙏❤️ There is also early degenerative disc disease and I don't know why this is happening. It doesn't seem to be related to AS. I still have many questions unanswered and it's hard to get doctors to explain. But the search continues....
@@tt_looking_glass I have DDD too. Dehydrated discs, low disc height, bone-on-bone at L5-S1 and herniation/ bulge at C5-C6 that comes and goes. I always thought DDD was mostly normal wear and tear of the spine if we have poor posture/ scoliosis, which i have a little bit of. 🤷♀️ I was also in 2 car accidents so maybe they contributed. Hang in there!! I think its a great idea to find professionals who have experience with the condition and seek out youtube videos, which im sure you've done already as well, of people who have figured out how to manage the condition. Like i said, you can do it! You've got this! Knowledge IS power. Never stop researching and learning. 😊
It's amazing how resilient we can be despite these challenges. I agree, finding professionals who understand our condition and seeking out helpful resources can make a huge difference. Knowledge truly is power, and I'll definitely keep researching and learning.
I can so relate. I haven’t been comfortable sitting in a regular chair for years. I have ddd but a previous g.p. thought I had a.s.. My spine has never fused so rheumatologists pretty much laughed me out of their office. I am hla B27 positive , I have eye trouble and have had 4 back surgeries. Crazy pain and wide spread neuropathy . I’ve been referred for Ketamine but cannot afford it. I am not far from Toronto but haven’t found a clinic tha doesn’t charge 750 dollars per infusion.
Your back sounds terrible. Similar to mine. There is new research that fibro myalgia can be seen in brain imaging. So it likely originates in the brain. It’s on you tube.
Excuse me you're light years ahead. Tell neurologist the cyst can be at any level confirmed S1 doesn't mean it isn't other places. If treatment with both procedures chill everything. That's confirmation in a way. Imagine a world without lower back or the truly hideous bra line pain. You're going to write the book on treatment in Canada
I'm so sorry you are going through this. I've been having back pain that isn't fibro , either! Of course standing all day doing hair is probably compressing my spine . I'm also in a nice good ole brain fog.. Feel better ! Here's a heart.
Thank you so much for your kind words. I'm sorry to hear about your back pain, standing all day doing hair must be really hard on your back. That brain fog is no joke either; it can make everything feel even more challenging.
It means a lot to have your support, and I hope you find some relief too. Take care of yourself and maybe try to sneak in some breaks when you can.
Search labs says yes . Spontaneous cerebral spinal leak syndrome can cause temporary blindness. Never heard of uvitis. Csf leaks are what powers the cyst largely.
❤ so brave Daniella, so proud of you to be able to do this video. I am so sorry that you have received such a hard diagnosis and actually seeing your spine. It really is a shock for you. I think we all react in different ways but denial is very common certainly with me! All we can do is live day by day. I am in UK and also am blessed to be on the NHS but waiting for scans and even getting hold of the rheumatologists secretary is impossible. No doctors seem to care what we are going through and they pass the buck on to other specialists. Praying that you are filled with inner strength and most of all peace that will restore you and refresh you. Lots of love and blessings to you and your family.😊
Hi Amanda! 💖 Thank you so much for your kind words and support. It's definitely been a tough journey. You're so right, denial is such a common reaction, and it's something we all deal with in our own ways.
I'm really sorry to hear about the challenges you're facing with the NHS. Waiting for scans and trying to get in touch with specialists is so frustrating, especially when we are experiencing symptoms.
Your prayers and kind thoughts mean the world to me. Sending lots of love and blessings your way as well. 😊❤️
I feel like your rheumatologist was being very finicky about ordering only the SI MRI. My GP ordered an MRI of the entire spine fro C to L. Why not do the whole spine while you’re in the machine anyway! I’m in Ontario. Our healthcare is only there for emergencies now, it’s awful especially since COVID.
Your experience really resonates with how I’m feeling about the situation. If you don't mind me asking, where in Ontario are you? It’s always interesting to connect with others in the same region, especially when we’re dealing with similar challenges.
@@tt_looking_glass I live just outside Ottawa, how about you?
I’m in Burlington, Ontario.
@@tt_looking_glass Hmmm a little far for coffee, that’s too bad!
@@ashatan4554 That's too bad.
You make me not feel so alone in this, thankyou!!!I have almost same story. Dec I was bed ridden for 2 months. Have all same except migraines. My bone spurs on xray looks like long sharp thorns. I have all the same back stuff 5 herniated disks, etc. I almost gasp when they ask me where the pain is???? I really appreciate this video. I can not get around. You are very beautiful(not weird) have kids your age!
Your comment means so much to me, thank you! I’m really glad that sharing my story makes you feel less alone. It sounds like you’ve been through so much, and I totally get the frustration when dealing with all those symptoms.
Being bedridden for two months must have been incredibly tough. I totally get that feeling when they ask where the pain is - it’s everywhere!
Thank you for your kind words. It’s really comforting to know we’re in this together. We’ve got this! 💖
I hope you have a great day!
I can so relate. I haven’t been comfortable sitting in a regular chair for years. I have ddd but a previous g.p. thought I had a.s.. My spine has never fused so rheumatologists pretty much laughed me out of their office. I am hla B27 positive , I have eye trouble and have had 4 back surgeries. Crazy pain and wide spread neuropathy . I’ve been referred for Ketamine but cannot afford it. I am not far from Toronto but haven’t found a clinic tha doesn’t charge 750 dollars per infusion.
Your back sounds terrible. Similar to mine.
I’m really sorry to hear about all you’re going through. Chronic pain and all those surgeries is such a tough road. I totally get the frustration with finding affordable treatment, it's a constant battle. I wish more options were accessible to everyone who needs them. Have you looked into Centenary Pain Clinic in Scarborough? With a referral, OHIP covers the infusions there, which might be a big help. Hang in there, and know you're not alone in this. Take care and keep reaching out, support makes a world of difference.
It’s not unusual for people who have fibromyalgia to have some other illnesses. The question is, what came first, the fibromyalgia or the other symptoms followed by fibromyalgia? With my fibromyalgia, every new pain I have blends in with the fibromyalgia. What you have is definitely a difficult thing to deal with. Sorry to hear you have another problem to deal with. For me, my doctor got to the point and said: "you have end-stage arthritis in your lower back, so basically it’s messed up” 🤪
You bring up such an interesting point about the chicken-or-egg scenario with fibromyalgia and other illnesses. It's like, which one started this whole rollercoaster, right?
I totally get what you mean about new pains just blending into the fibromyalgia symphony. It's like trying to pick out a single instrument in a loud, chaotic orchestra. I'm really sorry to hear about your arthritis diagnosis. Sending you lots of strength. Keep sharing, your perspective is so valuable, and it's a comfort knowing we’re not alone in this journey.
sounds like my MRI. Did the doctor discuss it with you or are you just interpreting the report? They told me this is normal findings for a 50 year old woman. We need to think of discs the same as grey hair. It doesn't harm us, it's just a normal process of ageing. Everyone has stenosis and everyone has DDD. I would wait for either your neurologist or a spine surgeon(b/c they read these all day - I'm not saying you need surgery) to read the MRIs. Plus, some MRIs are over read. I had 1 that said 4 things wrong and another that didn't mention them. When I asked the surgeon he said they were so minor the 2nd person probably found them insignificant. Reading that 1st report I was so scared. The second wasn't nearly as bad. Don't be scared yet, this pain can still be from just the fibromyalgia. Do you have numbness in your limbs? Do you have shooting pains?
I did discuss the MRI with my family doctor, but not with my rheumatologist yet. She explained pretty much exactly what you just said-that it’s a normal part of aging for a lot of people. However, she also mentioned that my spine is a lot more advanced for my age, like I have the spine of an 80-year-old.
Within the context of my chronic back pain, it makes sense. I do believe that whatever pain the issues on my spine cause is amplified because of the fibromyalgia. I was diagnosed with Ankylosing Spondylitis wich cause back pain, Fibromyalgia causes back pain, DDD causes back
You don't need no stinking script apparently
Thank you so much for your sweet words and support. ❤️ It really does suck, and it’s so frustrating how the healthcare system is so slow.
It is a lot to process, coming to terms with a new diagnosis and medications but I’m just trying to take it one step at a time and figure out what I can do for myself without the medical system.
💜 Thank you for sharing! Anytime I need to lift my spirits & detach from own issues, I watch your videos & you always cheer me up! You always have a smile on your face & are always looking for solutions instead of complaining about your issues. I appreciate you being so open & allowing us on your journey!
Thank you so much. It means the world to me to hear that my videos can lift your spirits and bring a bit of cheer. I'm so glad to have you along on this journey, and your support and kind words keep me going. We're all in this together, looking for solutions and finding strength in each other. Take care and keep smiling! 😊🌟
❤ This video wasn't boring at all. I'm a new subscriber and have been binge watching all your videos in the last week. I'm so sorry you're going through so much, but you're such a fighter and such an inspiration. I've recently been diagnosed with Fibromyalgia and your videos have helped me in so many ways. From understanding what Fibro is, to advice and tips on how to manage on a daily basis and even flare ups. I can't thank you enough and I no longer feel alone in this battle. Sending you all the love, support and gentle hugs from the UK!
Welcome to the channel! I’m so glad you found the videos helpful and not boring. It means a lot to hear that they’ve made a difference for you. Fibromyalgia can feel so isolating, but knowing we’re not alone makes it a bit easier to handle.
I’m really sorry about your diagnosis, but it’s great to hear that you’re finding ways to manage. We’re all fighters in this together. Sending you lots of love, support, and gentle hugs right back from across the pond! 💜😊
My heart goes out to you and all others who are affected by chronic illness. This is the second time I’ve watched this video from start to finish ❤ The first time I think I was having a brain fog because I meant to reply but I’m going through my own flare at this time. Watching this again when I’m feeling more alert, I feel so bad about your situation. I have always felt that it must be great to live in a country with universal health care, whereas in the USA millions are still not covered in spite of the passage of the Affordable Care Act. (I don’t like the term ObamaCare because it has been used as a political negative word.). I really am praying that you can get treatment very soon, and I think that the sooner you can get it the better off you will be. I struggled with undiagnosed AS for nearly twenty years, but once my ophthalmologist and rheumatologist got together I almost breezed right through and was approved for treatment with Enbrel. It was a real blessing, because I think less than a month passed between the time I started getting uveitis and my first dose of Enbrel. I thought nothing of it at the time, but now I know how fortunate I was to be getting first class medication in record time. The first time I watched this I wasn’t very attuned to your words and especially the look on your face, but the second time I could see from the start that you had some very bad news from your imaging tests. This must be a very heavy cross to bear, knowing that you could be getting some relief but getting caught up in a lot of red tape. I sincerely hope and pray that you can see the rheumatologist soon. Keep trying to get an appointment, who knows, maybe there will be a cancellation that will make room for you to see the doctor? Jesus told a story of a woman who had a complaint before a judge, the judge didn’t care one little bit about her situation, but she kept on petitioning the judge until he finally found in favor of her complaint. You can be like that woman in the parable and keep your eye focused on getting around the red tape. I know from your channel how tough you are to have lived with all this pain for all those years. I know just how you felt at the holidays when you were in such pain you were holding back tears. I’ve been through that myself, just holding onto something at my job with my eyes screwed shut from the pain and then having my boss tell me to help someone to put something heavy into their car. We do what we have to do, often because others are counting on us. I don’t know what your religious beliefs are, but I think that when we do for others in spite of the pain, we are storing up treasure in Heaven. I love the Lord, but I fear him too, and I would rather do my suffering in this life than the next.
I know that I’ve rambled on here, but I want you to know that I didn’t find your video to be overly long or boring. Far, far from it. You are clearly very intelligent and involved with your own diagnosis and treatment. You handled a lot of medical terminology quite well, and it was a detailed and thorough review of what came up on your imaging. And to think that you did it all off the top of your head, without any preparation or bullet points! You were fantastic, I know from all the hearts that I see in the comments. Stay strong, Daniela, and thank you for providing a forum for people with chronic pain to share and help one another. May God bless you and your dear ones, and stay strong, not only for yourself, but for all your friends around the world!
Your heartfelt message truly touched me. Thank you so much for your kind words and for watching the video twice-that means a lot to me. Brain fog can make it hard to focus, and I’m glad you found the video helpful the second time around.
I completely understand the challenges of living with a chronic illness, especially when dealing with healthcare systems. It’s frustrating to know that treatment is out there but caught up in red tape. Your experience with Enbrel is inspiring and gives me hope. I'm so glad your ophthalmologist and rheumatologist were able to work together to get you the treatment you needed quickly.
The parable you mentioned is a wonderful reminder to stay persistent. I’ll keep pushing to get that appointment and not give up. Your story of working through pain and still helping others resonates deeply. We do what we have to, often because we care so much for those around us.
Thank you for your encouraging words about the video. I try to be thorough and clear, and it’s rewarding to know that it’s appreciated. This community is incredibly supportive, and I’m grateful to be a part of it.
Stay strong as well, and thank you for your prayers and blessings. Together, we can continue to support each other through these tough times. May God bless you and your loved ones too!
I really enjoy your videos! I am on a similar journey. It is so frustrating! I wish you lots of luck and healing. Will keep following!
Thanks so much for the kind words! I'm glad to hear you're enjoying the videos. It really helps knowing we're on similar journeys and can support each other. I know how frustrating it can be, but having this community makes it a bit easier.
Wishing you lots of luck and healing as well. We’ve got this! 😊✨ I'll keep sharing, and I look forward to having you along for the ride. Take care!
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Your supergirl , I have costo which I think is bad but its nothing to what you go through.
Thank you so much for the love and those sweet words, Rebecca! ❤️ I have to say, living with costochondritis is no joke either. It’s tough, and you’re doing an amazing job handling it. We all have our own battles, and you’re just as much of a superhero in yours. Let’s keep lifting each other up. We’ve got this! 💪❤️
@@tt_looking_glass yes, we do
❤What a heartbreaking experience you have had, and such a serious turn of events to your health! I'm sorry you are going through this. Much strength to you on this continuing journey you have.
Thank you so much for your heartfelt message. It’s been a tough ride, but hearing kind words from people like you makes it a bit easier to keep pushing forward. I’m sending you lots of strength too, we’re all on this journey together, and supporting each other makes a big difference.
Your compassion means a lot to me. Let's keep holding each other up.
Your fellow traveller on this journey. ♥️
Oh you'll be cooling the jets begining at c5
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I wanted to be here when you released this video 3 days ago, but I am going through something new lately & it's knocking me out.
Soo, this one made me cry as well! 😭
It's ASTONISHING to me how incredibly well you can describe how these symptoms affect you!
I'm also surprised by your description of your MRI results - we have nearly identical issues going on - are we separated at birth?? lol
I don't know if you'll see this or not, so I won't get too involved with details, but I have serious neck & lower back pain - I've had 3 lumbar injections for my back.
I've done physical therapy for both my neck & back - (it was very minimally helpful), I've had a slew of blood work, MRI's, X-rays, Sonograms, medication and I'm STILL in a lot of pain.
Day to day I walk with a cane, long distances I have to have a wheelchair.
And through all of this I still believe that something else is going on, but I can't get answers! I honestly feel like doctors are just ignoring me and/or gaslighting me. 🤷🏽♀️
I hope you can get answers for yourself and keep posting, I love your videos!
Blessings and extra soft hugs!
-Your Sister in Pain ✌🏻🩵
Sending you a huge, gentle hug right now. ❤️ I'm so sorry to hear you're dealing with something new and tough lately. I totally understand how it knocks you out, it's so draining.
Your comment really hit home for me. I’m always blown away by how connected we all are through these shared experiences. It’s crazy how our MRI results are nearly identical. We must be chronic illness twin syndrome! 😅
I can relate to your struggles with neck and lower back pain so much, the endless appointments, tests, and treatments that feel like they lead nowhere.
It's comforting to know we’re not alone in this, even though it's so tough. I make it a point to read and reply to all comments because each one matters to me, and connecting with you all is such a source of strength. Sometimes I might miss a comment if it’s a reply to another comment, but I do my best to stay connected.
Thank you for sharing your story and for the kind words about the videos. Knowing that they resonate with you and others keeps me going. Let's keep supporting each other through this journey. We’re stronger together.
Blessings and extra soft hugs right back at you!
Love that you refer to yourself as a sister in pain. ♥️
❤❤ I'm sorry that you had to go through that, some doctors take way too long to treat someone, especially if there are no immediate threats. I know what it is like to feel disregarded just because the test results say you're not dying. I hope you get answers soon and I hope the doctors take you more seriously, because I know their indifference only makes it worse...
Thank you so much for your empathy. It’s so frustrating when doctors take forever to address our concerns, especially when we’re not seen as an immediate priority. I know exactly how it feels to be disregarded just because the tests say one thing while our bodies scream another. I hope we both get the answers and care we deserve soon. Your support means the world to me. Take care! 🌸
Thank you for documenting your journey. It has helped me understand a lot more about my Fibro symptoms. I'm newly diagnosed with fibro this year. I'm in the US. I have tarsal tunnel disease and chronic ankle instability which has caused major nerve damage in my feet, ankles and back. I've had that for about 25 years. My RA specialist posited that since I already had chronic moderate to severe pain in the feet/ankles and then went through a period of extreme stress (as a US school teacher... can you say gun violence...) my brain scrambled the pain signals and created fibromyalgia for me. I'm wondering if you had back pain before fibro? I'm wondering if anyone else has had chronic pain before fibro that has developed into further widespread pain and then other fibro symptoms?
Hey Jennifer! Thank you so much for sharing your story and for the kind words. I'm really glad my journey has helped you understand your Fibro symptoms better. It sounds like you've been through a lot, especially with tarsal tunnel disease and chronic ankle instability - 25 years of that kind of pain is no joke.
I can definitely relate to what your RA specialist mentioned. I think it's not uncommon for chronic pain in one area to eventually spread and morph into fibromyalgia, especially after extreme stress. Being a school teacher and dealing with the stress of gun violence must be incredibly challenging.
Thank you for sharing, and keep reaching out - we're all here to support each other. 💜
@@tt_looking_glass I did not know that prior pain could morph into a wide spread pain condition. It took so long for my foot pain to be recognized and treated that I feel like the medical establishment in the US really let me down. I was treated like my pain didn't matter. Since I was treated like that as a young woman, I feel that I push harder now as a middle aged woman to make my voice heard. I sense that same feeling of shouting into the void in a lot of people I've met with fibromyalgia. Its like society just ignores pain and then you're treated like a criminal (at least in the US) for wanting proper pain control options. I have lyrica which works for me so far but for acute symptoms I have nothing except extra strength NSAIDS. I don't like it. I want to see a change in the way these things are treated.
Here in Turkey, I had private insurance when I worked and they love sending you for imaging (money money money) and then hand you the results before seeing the specialist. All those words ... I remember seeing them for the first time, I was overwhelmed and shocked. Thankfully my specialist explained which parts of the report I need to take serious and that everything and everything is related to symptoms. You can many herniated discs for example and not feel any pain. Or you can have the tiniest of protrusion and you can be in hell. My advice is to never read or try to interrupt an imaging report because it will increase your pain, give you serious unnecessary anxiety etc. Many of the things sadly come with age - degenerative simply means we are getting older. But reading it there, on paper, you can feel more pain, so don't read the reports! 😍
Yes, you are absolutely right. The words can be scary, and I understand the mind-body connection. When you believe something is bad, it will be bad. But the reason I did this MRI was because of the amount of pain I have been in. Many times, it's so debilitating that it leaves me on the floor, breathless, and unable to move. So, it just made sense. I hope this will help me manage better and support my back and health in the best way I can.
Your advice is spot on-never read or try to interpret an imaging report on your own. It just ramps up the anxiety and pain unnecessarily. Degenerative changes often mean we're getting older, but what was explained to me is that it is too advanced for my age. So maybe it's like I have the back of a 90-year-old, which explains a lot because I often feel that way. Lol!
its the same in iran, you speak a word about pain, youre sent for whatever test is related to it,the same day,or just in a couple of days. its not that expensive though, not compared to cost of living atleast....soooo, to me thats actually perfect. i would never wanna wait for so long for a just a test
its the same in iran, you speak a word about pain, youre sent for whatever test is related to it,the same day,or just in a couple of days. its not that expensive though, not compared to cost of living atleast....soooo, to me thats actually perfect. i would never wanna wait for so long for a just a test
Waiting for tests can be so stressful, so getting them done quickly must be a relief.
@@annipsy2185 Greetings to Iran! Just curious, is illness also semi a competition in society? Here in Turkiye it is. You visit friends, family or even chatting to strangers in hospital waiting rooms, people LOVE to talk about their ailments. It is all 'I have this, I have that' 'oh you have that, but I have this'. As someone with a lot of this and that (!), I prefer to stay quiet, that's why I was curious. ❤
Daniela I am so very sorry you are going through this. Please know my heart is with you! So much to process. Life sometimes makes no sense at all. Sending many hugs and well wishes to you in hopes that relief will come for you! Thank you for sharing ❤❤ Geri
Thank you so much for your kind words and support, Geri. It really means a lot to me. You're right, sometimes life just doesn’t make any sense, and it can be so overwhelming to process everything. Sharing my journey helps me feel less alone, and knowing I have such a supportive community makes a world of difference. Hugs and lots of love. Thank you for being here and for your wonderful message. ❤️❤️
@@tt_looking_glass I hope you are getting some relief now, Daniela. It seems so many are going through health struggles and I agree with you that supporting each other and being encouraging does help us to keep going. I hope you are having many more good days than tough days. Hugs & Love to you!! 💝💞 Geri
Thank you so much, Geri. It really does help to have a community where we can encourage each other through our health struggles. I'm hoping for many more good days for all of us. Hugs and love to you too!
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Thank you. I understand your frustration with several specialists. I am in the US and even though our medical system is different, getting appointments when you are chronic is difficult. Pain relief is even harder 😢. Pain medication is the great evil here. Depression is so high with chronic illness. I have learned that misery really does not love company. I have resorted to staying in my apartment alone where I can control the light, sound, no strong odors, the temperature and I don’t have to be nice if I don’t feel nice. I go out to see doctors if I can’t do a televisit, to pick up groceries or medication. That is what my life is now. It is hard for others to understand, but being in pain all the time is too.
It's incredibly tough navigating the medical system and managing chronic pain, especially when it feels like the system isn't set up to support us. Your strategy of creating a controlled environment in your apartment makes a lot of sense, and it's important to have that safe space. But this can be so isolating. Please know you're not alone. Our community here understands and supports you. Sending you strength and solidarity. 💖
You are not alone and I hope you are able to participate in online communities to ease the isolation.
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Hi Daniela 👋 sorry to hear your MRI was not good news 😞 glad that you persisted to get some explanation for your higher levels of pain. I've also had fibro since I was 19 ( I'm now 46 !!) and have had long-standing chronic to severe back pain. Having had diagnostic spine scans since the early days, I've always known I have Scheuermann's Disease. The diagnostic criteria are 3 or more wedged vertebrae, at 5 degrees or more. It causes a 'rounded back' and with time, being so out of alignment, causes early degenerative disc disease in other areas of the spine.. cervical, thoracic and lumbar. It may be worth checking out, given the MRI showing multiple anterior wedging of the vertebrae. Best of luck 💜💜💜
Thanks so much for your kind words. It’s been a tough ride, but I'm glad I persisted to get some answers for my pain. It’s comforting to know I’m not alone in this.
It sounds like you’ve been through a lot with fibro and chronic back pain since a young age. Scheuermann's Disease sounds challenging, I appreciate you sharing your experience and the diagnostic criteria - I’ll definitely look into that given the MRI results. Which specialist would normally diagnose this disease?
Thanks again, and best of luck to you too.
Hmm... now I think about it, there's no mention of "endplate irregularity" but here is a link to the Scheuermann's Disease page. Under Resources is a global Doctor Database, as many doctors aren't familiar with it. It's basically Scoliosis but instead of side-to-side, it's a front-to-back curve. Either way, hopefully you can find some answers soon.
Yes, I've had cervical disc replacement and thoracic spinal fusion from T4-L3 and had Lumbar MRI a week and a half ago as that's not looking great either! Thanks for sharing your experiences, makes me feel not so alone too x
Thank you for sharing this information and the link to the Scheuermann's Disease page. I'll definitely check out the global Doctor Database-it's so helpful to have resources when many doctors aren't familiar with it. I'm sorry to hear about your extensive spinal surgeries and ongoing challenges. Thank you for sharing your experiences too. Wishing you all the best and hoping you find some answers and relief soon.
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❤ i hope you’ll get the meds you need. Take it slow and hang on. You can.
Thank you. ♥️
OMG!! I hate to say I know how you feel, only because I don't want to diminish your pain in any way. But what you you just read was so similar to my MRI reading I received at the end of April of this year for my cervical spine and the CT-scan from my lumbar spine last fall before the last fall. I have 4 levels of bilateral stenosis (compression) in the cervical spine and 2 levels of central stenosis in the cervical spine with new bone growth that was not there in March of 2023 when they did a bony fusion at C6/7 and removed 3 spikey osteophytes as well as a ton of scar tissue from the 2006 fusion where the scar tissue became adhesions and didn't stop growing causing twice the amount of time to do the surgery. I am now waiting for the surgical scheduler to call for the 3rd fusion and this time they are going to put stabilizing cables in from the back after they complete the fusion from the front.
I am so extremely sorry you are facing this pain! I would not want anyone to feel this! Last night I laid in bed for about three hours with fiery hot nerve pain in the right side of my face unable to do anything but try to hold still so the pain would not increase. I want to be able to live a life that does not require me to stay alone in this bed.
I really hope you get the meds you need to help you. I don't
know what is next after this surgery for me, But I hope I will be able to laugh more with out trying to hold back out of fear of pain.
Wow, it sounds like you’ve been through so much. I can’t even imagine how tough all those surgeries and the constant pain must be. It’s awful to have to deal with fiery nerve pain like that. I really hope you get that call soon and the next surgery brings some relief. I totally understand wanting to live a life without being stuck in bed. I’m rooting for you to get there.
ake care, and keep us posted on how you're doing. 💜
@@tt_looking_glass 🧡🧡
I got the call yesterday and I’m having surgery Monday 07/01/2024
My heart goes out to you!! I am sending all the good juju in hopes your ophthalmologist agrees with your needed medication.
I also want to tell you not every video or vlog or whatever it’s called needs to be dynamic or inspirational. You have created a community of people that understand your experiences. And they are interested in your journey because they relate. Especially to the everyday common struggles. Just remember these “followers” are interested in you… exactly how you are. And imho, if they’re not oh well! Forget about em! Lol
Thank you so much for your kind words and support! 🧡🧡 I'm sending you all the positive vibes for a smooth recovery from your surgery yesterday. Your encouragement means the world to me. It's so comforting to know that this community understands and relates to the everyday struggles. I'll keep your advice close to heart and continue sharing my journey as it is. Thank you for being such a wonderful part of this community! Take care and keep us posted on how you're doing. 💖
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I believe all these systems and separate diagnosis are a syndrome of some sort. All the drs, here treat me like a drug seeker. It is very sad. They should see I have trouble with alot of medicines(part of fibro for some)Meanwhile I am in agony most of the time and then will have a flare! Ugh! Can not get the heart emoji to come up so*************those are hearts
I hear you, and it's so frustrating when doctors don't understand the real pain we're in. Dealing with multiple issues and medication sensitivities is such a challenge. It feels like you have no options for relief.
I'm sorry you're in so much agony and then have to deal with flares on top of it all. It's not fair, and it's definitely not easy. Just know that there are people out here who get it and who are rooting for you. Here are some hearts for you. lol!! ♥️♥️♥️♥️♥️♥️♥️
Do you have hypomobility it makes Medication side effects
I don't qualify for having hypermobility, but I do have hypermobile hips and shoulders, just not anywhere else.
I'm sorry this is happening. Honestly this is why i go the homeopathic direction to treat my fibro. I am so disillusioned by the medical fields. And the gaslighting that happens to those of us suffering with an invisible chronic illness. I hope you get what you need from your Doctors. Sending hugs
Thank you for your kind words and support. I totally understand your disillusionment with the medical field. Unfortunately, I've never had much luck with homeopathic treatments. I've tried so many alternative treatments and nothing ever helps. I'm so glad you have found it helpful to treat your Fibro. Sending you big hugs and lots of strength. Thanks for sharing your experience and for being part of this supportive community. Take care!
I'm early in my journey with Fibro but I find that doing both complimentary and regular medical treatments are a good combo for me. Acupuncture works well for me (15 weeks of it once a week) and I've upped my vitamin intake. I've had feet/ankle pain for years and exercise really is one of my coping mechanisms for pain and stiffness. My primary symptoms are more fog centered rather than pain though. But I'm beginning to understand that each person has a different set of symptoms.
@@jenniferkastilahn4210 It sounds like you're really taking a proactive approach to managing your fibro, which is so important. Combining complementary treatments with regular medical care can make such a difference. I’m glad acupuncture is helping, and that you’ve found exercise beneficial despite the pain. It’s interesting how fibro affects everyone so differently, foggy symptoms can be just as challenging as pain. Keep exploring what works best for you and know that sharing your journey helps others too. You're doing amazing! 🌟
❣sending love and prayers!
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Thank you for watching till the end. ❤️
I watched the Whole thing. ❤
Thank you so much for your support! ♥️
Oh friend! How frustrating!!! This all sounds SO scary😢. That's so much info to process, and I understand the denial. It all DOES become so overwhelming. I can't imagine how overwhelmed you are right now. Girl, do we ever get a breapk?! 😂. And ❤ . The end. Hehe. I was wondering where you were! I'm keeping you in my prayers, Daniella. I got new stuff now too. Being screened for EDS. I'm in so much pain! Plus I'm not healing from my hysterectomy STILL. It was done February 14th! So sorry, had to vent too. But that's what we do. Support each other. Validate each other. Be compassionate to each other. So much love, my friend ❤💓❤️.
Oh wow, your message really hit home for me. It’s like we’re all navigating this endless maze of health issues, right? It does get so overwhelming, and the denial is real-I totally feel you on that.
I’m so sorry to hear about the pain you're in and the slow healing from your hysterectomy. That’s a lot to handle all at once. Being screened for EDS on top of everything must feel like the universe is just piling it on. Vent away, this is exactly the place for it. We’re here to lift each other up and get through the tough times together.
Thank you for your prayers and all the love, my friend. Sending you so much love and strength right back. We’re in this together, and we’ll keep supporting each other. ❤️
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thank you. ♥️
I’m sorry you’re dealing with another diagnosis. I hope you can begin treatment soon. I understand you not wanting to wait because you want the damage to stop. Hang in there, Daniela. I’m sending lots of love and prayers to you!! 💗🙏🙏🙏
I always wonder if I have this… I had a lot of back pain that got better with Remicade infusions for my Ulcerative Colitis. I never had the eye problem you’ve had. I’m so glad you didn’t lose your vision!! I know that must have been scary.
Thank you so much for your kind words and prayers, Debra! 💗🙏 It means a lot to me. I’m really hoping to start treatment soon, too. The waiting can be so tough when you just want the damage to stop.
I’m glad to hear that Remicade infusions helped with your back pain! It's interesting how treatments for one condition can sometimes alleviate symptoms of another. AS is often associated with gut autoimmune disorders like Ulcerative Colitis, so it's not surprising that the Remicade helped. And yes, the eye problems were terrifying, but I'm so grateful I didn't lose my vision. It really puts things into perspective.
Thank you, Daniela!! I’m cheering you on! You have lots of traveling and camping left to do! 💗
@@tt_looking_glassMy heart breaks for you Daniela watching your video this afternoon. I’m so very sorry for all the excruciating pain and frustration of waiting that you endure every single day. Have faith and trust in God. That is how I survive and have hope everyday in my illnesses healing journey. Sending lots of love, prayers and positive energy your way. 🙏🏻❤️🦋🌹🕊️
@lyndathompson6315 Thank you so much for your kind and heartfelt message. Your support means the world to me. Holding onto faith and trust in God is a powerful way to find hope and strength in our healing journeys. I truly appreciate the love, prayers, and positive energy you're sending my way. Sending lots of love and prayers to you as well. 🙏🏻❤️
Health care in general is going down hill unfortunately. I will leave it at that. 2012 I had a C6/7 fusion done because I had a herniated disc. I just woke up thinking I slept weird on my neck and would get better after a few days. That was August 15,2012 and took a couple of months to figure out I had a herniated disc. November 30th 2012 I had the surgery. It did fix the disc problem but shortly after that I was diagnosed with Fibromyalgia. I believe the trauma from the surgery triggered the Fibromyalgia. I was absolutely fine before my neck problem. I also had a bone spur lying right on the nerve. Nerve pain is like no other. I was begging for the surgery because I was in so much pain. I know what you have and believe it or not it is very common to have degenerative conditions of the spine. They can do things to make more room for your spinal cord so the nerves are not being crushed. I had to have surgery because it was bad. I would get more than one opinion about your MRI. PT is a must and there are certain exercises for each part of the spine. I know it’s overwhelming but there’s hope and yes Fibromyalgia does add to back pain problems!! I have severe back pain all the time 24/7 besides my whole body killing me. I wear a brace for my back and that helps. I also am on ice gel packs constantly. Heating pad sometimes just depends but ice packs really help with nerve pain. I’m on a muscle relaxer,Tylenol #3,valium. I used to be on more hardcore pain meds but I had to get off them. I understand the waiting game and when you’re in that much pain it’s beyond frustrating. I’m thankful to the Lord that you are getting some answers and it will get better. It’s one day at a time and I do a lot of praying for help especially with my mental state and I don’t have much people support. I live alone and am 58 and will be 13 years in August. I never get a break from the pain. It’s non-stop. Some are worse. I’m thankful that you do the videos. I watch them and they help me to know I’m not alone and other people are going through stuff too. I’m finding out more and more you have to make yourself keep moving unless it’s harmful to a particular part of your body. You will know that in time. I will always hurt so I have to adjust my mindset and realize that is part of it. I call them Victories!! I never know what a day will be like. There’s no consistency so hard to plan. I thank God whatever He helps me do everyday! I’m blessed because I understand suffering and pain and most people don’t. I’ve been given a gift and I’m not all caught up with myself and can be understanding and empathetic to others in a way I wasn’t before. I appreciate everything more than ever. People used to have to wait for everything. Technology has made waiting worse. Keep trying to get in sooner if you can. Keep seeking knocking etc. The journey continues…❤️🙏💐
Wow, thank you for sharing your story. You've been through so much, and your strength really shines through.
Your journey from thinking you slept wrong to discovering a herniated disc and then dealing with fibromyalgia is intense. It’s frustrating when we’re desperate for relief and have to go through so much just to get answers. Nerve pain is indeed horrible, and it's a struggle that not everyone understands.
I'm glad you're finding some ways to manage the pain, like ice packs and a brace, and it’s inspiring to hear how you keep moving forward despite it all. Your resilience and faith are incredible. It’s true , finding victories in our daily battles, no matter how small, can make a huge difference.
Thank you for watching the videos and being part of this community. Knowing we're not alone makes a big difference. Keep taking it one day at a time, and remember, you’ve got people here who understand and support you.
Sending you lots of strength and good vibes.
Thanks for the update! It must be a very difficult time for you! Sometimes I do feel like with anything pain related, doctors tend to have such a passive role both in public or private healthcare... Because it is not immediate life threatening, therefore we don't get checkups like many other diseases just get it as a norm... It is very frustrating when no one wants to listen or it always cost a lot of money, while the pain itself made us jobless... I am now scared to have kids as I don't want my future kids to suffer what I have been through, yet I also feel sorry to take away my partner's rights to have his own child as I know he will be a great father...
Thanks for sharing your story. It is incredibly frustrating when doctors take such a passive role with pain-related issues, and it feels like we have to fight so hard just to get the care we need. It’s tough when the pain itself affects our ability to work, and the costs just add to the stress. I too lost my job and the ability to make a decent income.
I really feel you on the fear of having kids. It's a huge decision, and wanting to protect them from the pain you've experienced is completely understandable. Balancing that with your partner's desires is such a difficult situation. Remember, whatever decision you make will come from a place of love and thoughtfulness, and that’s what matters most.
Sending you lots of strength and support. Hang in there, and take care of yourself. 💖
❤ I too have fibro and just recently found your channel. It really helps give me insight and makes me not feel so alone. Just last week finally got an MRI for my lumbar spine confirming disc degeneration, osteoarthritis, forminal stenosis and narrowing throughout pretty much the entire lumbar spine and into the upper sacral spine. I'm so sorry to hear you are dealing with this. Seems we're always fighting the healthcare system to be seen and heard. Keep pushing through, you are strong! You are an inspiration and a warrior.
Welcome to the channel, and thank you for your kind words! I'm so glad you're finding it helpful and that it makes you feel less alone. It's always comforting to connect with others who truly understand what we're going through.
I'm sorry to hear about your recent MRI results, that’s a lot to take in. I totally understand. All the stuff in your back sounds very similar to what they found in mine. I understand the pain. It really does feel like we're constantly fighting the healthcare system just to be seen and heard.
But you're right, we have to keep pushing through. Sending you lots of love and strength. Keep being the warrior that you are! 💖💪
❤ Oh Daniela I really feel for you. I’ve been watching your channel for a long time but never commented before. I have fibromyalgia too, diagnosed 2012 after the birth of my 3rd child. I know like you that there are other issues going on, but my doctor refuses to refer me back to rheumatology because I was seen by them and have fibromyalgia! It’s so darned frustrating. They can’t seem to accept that it’s possible to get other conditions on top. I truly hope your ophthalmologist is helpful in your battle for treatment ❤️
Thank you so much for your kind words and for watching my channel for so long. I'm sorry to hear about your struggles with fibromyalgia and the frustration with your doctor. It’s so challenging when they don’t acknowledge the possibility of having other conditions on top. I truly understand how frustrating that is. I hope your situation improves and that you get the referrals and treatment you need. Thank you for your support, and I’ll keep everyone updated on my battle for treatment. ❤️
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I haven't seen you in the comments for a while! I was literally just thinking of you yesterday and wondering if you were still around. It's so nice to see you here again.
@@tt_looking_glass Hello Daniela…I haven’t missed any of your videos. I’ve been following your health plight thru all of its twists and turns! You’ve been thru so much already, yet you’re still learning something new about your body that you weren’t aware of a year or more ago…..I think you really do want to know everything that’s afflicting you. You need to get the “full picture” in order to better cope and your mind will become more at peace when you’ve done everything to the best of your abilities to gain a better understanding of your complex health conditions now in the 2nd half of your life….It’s like trying to put all the pieces of a puzzle together to be able to see the full picture…Some of the puzzle pieces don’t seem to fit….but eventually they will the closer you get to complete the puzzle…..I’m always hoping for the best for you and praying you’ll get your “piece of mind” with all your ailments!
Thanks for asking ❤️ I’m doing/feeling so much better now than I was 2-3 years ago…….no big flares! 🤗 My pain has greatly decreased while stamina/quality of life has increased….Thankfully, I’m better able to help my elderly parents with their conditions, while taking better care of myself….for me, better rest, more outdoor activity, and improved gut/digestion helped my condition tremendously! I have less time to sit and watch a lot of YT videos now, but I will always watch your vids! You are very inspirational to your entire online family! You’re a true warrior! We are all routing for you to find peace and have the best quality of life you possibly can! 👍🏼
Thank you so much for your unwavering support and for following my journey so closely. It means a lot to me. You're absolutely right, understanding the full picture of my health conditions is crucial for finding peace and coping better. It does feel like putting together a complex puzzle, but with every piece that falls into place, I gain more clarity.
I'm so glad to hear that you're feeling much better now than a few years ago, with fewer flares and improved quality of life. It's wonderful that you're able to take better care of yourself and help your elderly parents.
Thank you for always watching my videos and for your kind words. Your encouragement and support is very apprecitated. We're all in this together, and knowing I have such a supportive online family keeps me going. Wishing you continued health and happiness! You're a true warrior too! 👍🏼❤️
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Thank you so much for your support. ♥️
@@tt_looking_glass you are most welcome!!
I shared things on a channel I have been watching since 2020 just a second ago. I shared things I’ve not said out loud to anyone outside my family and therapists!
I felt it was extremely important to do so, because that channel gave me a little bit of hope to get back to my spiritual side
And you give me that hope too I feel like I have some things to share and I’m not sure how to, but I’ve done some huge breakthroughs in therapy. My surgery went really well, but even if I fall tomorrow feel like there are things that I have to share with people and it can just be the person next to me or it could be over that doesn’t matter. But I am going to figure out how to start a nonprofit in the state I live in to help people physically disabled. They do not have any type of developmental disability, and are not old enough to be a senior and young enough to be a minor. I want to help them, not have to struggle to learn the things I had to learn in order to survive and find ways to, be able to live. Most of the programs where I live are for people who are coming out of institutions or other things that I mentioned there’s not a lot of programs for people who become suddenly physically disabled and unable to care for themselves or work to support themselves. I don’t know how to do that, but I am just gonna keep putting it out there and maybe somebody will read this and have some information about how to start that part of the next chapter of my life. Maybe they can help me write it down in a book so other people can do it as well or, a manual or something or figure out what’s going on in their states or.
I feel that the only way to live anymore be a community and that has to start in your heart and then in your home and then your neighborhood and then in your community and it grows from there. I feel most people really just want to feel they have community And they’re not alone I know that’s all I ever wanted and I didn’t have that and so now I’m going to create it big part of that give courage to start talking my truth and figuring out how to help people whether it’s from bed or mountain top. It doesn’t matter. I spent three years watching training videos for employees of the department of human services in my state that I live in because I didn’t know what was available to me and I was bored so I kept having to read them so I could remember them
Your message is incredibly inspiring and heartwarming. Thank you for sharing so openly. It’s amazing to hear about your breakthroughs in therapy and your successful surgery. Your determination to help others, especially those who are physically disabled, is truly amazing. Starting a nonprofit to support them sounds like a wonderful idea, and your experiences and insights will undoubtedly make a huge difference.
The way you view community and the importance of supporting one another is so powerful. You’re right, community starts from the heart and grows outward. Your efforts to learn, share, and support others are already creating ripples of positive change.
We’re all here cheering you on. Keep pushing forward and know that your efforts are deeply appreciated. You’re making a big difference in this world. Sending you lots of love and strength! 💪❤️🌟
❤I wish you the best.
Thank you so much! ♥️
Sending healing love and light. Is there anything that Drs can do for you? I made it to the end. How can you manage your pain?
Thank you so much for the healing love and light. It means a lot. Right now, I'm still waiting to see my rheumatologist. There are medications that can help, and I’m hoping my doctor will prescribe something that works for me. But, as always, there are side effects to consider, which can be tricky.
Thanks for sticking with me to the end of the video and for your support. Sending you love and light back! 💖🌟
❤❤. Damn, they’ve really got you running in circles. It never occurred to me that I was lucky that I had a, dunno what you’d call it...back accident at 18, that’s when I found out I had spondylitis and ddd and was diagnosed with fibro 3 or so years later instead of the other way round. My GP’s have always been super helpful and so was my original rheumatologist, (the latest one not so much). My GP’s have always gone over the head of someone they don’t think is doing it right. It’s why we drive over an hour one way now to see them, we’ve moved, they’ve moved, we have plans in place if I can’t get there, so grateful to them. Anyways I hope today isn’t to bad for you xxx 🦘❤️
Cathie, It sounds like you’ve been on quite the journey with your health too. Having doctors who really listen and go above and beyond makes such a difference. Driving an hour to see them is a testament to how important it is to have the right care team.
It’s amazing how you’ve managed to navigate all this and put plans in place for when things get tough.
Thank you for sharing your story and your kind wishes. I hope today is treating you gently too. How do you usually manage on those long drives to your GP? 🦘❤️