Another diagnosis? A health update - Fibromyalgia day in the life vlog
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- Опубліковано 30 вер 2024
- #fibromyalgia #chronicillness #ankylosingspondylitis
Hey friends, it's Daniela here. Welcome to my latest vlog where I share a real and raw glimpse into my life with Fibromyalgia. This week has been tough, with a flare-up that's challenged me more than usual, but I'm here to share it all with you.
In this vlog, I open up about the unpredictability of Fibromyalgia and how it affects my daily life, including my vlogging schedule. You'll see me navigating through the day, from dealing with intense brain fog to the effort it takes to just to have a shower. Despite the struggles, I managed to sprinkle a bit of festive spirit into the day by starting some early Christmas decorating.
I also dive into a health update, discussing recent developments in my diagnosis and how they might change my understanding of my symptoms and treatment. It's a journey filled with uncertainty but also hope, as I explore new possibilities and continue to learn more about my condition.
Join me in this intimate vlog as I share the highs and lows of living with a chronic illness. Your support means the world to me, and I hope my journey can offer some comfort and understanding to anyone walking a similar path.
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I’m Daniela I have been diagnosed with several chronic illnesses. I look normal, I do things, have a job and go on vacations, but inside I'm sick. I live with several chronic illnesses and they affect my daily life. I am in constant pain and struggle with brain fog. Although I'm constantly looking for new doctors, new treatments and solutions I have also accepted my illnesses and do not let them define me. In this channel, I share a little bit of everything. Information about my conditions, my travels, my dreams, my journey, my life. This channel is about life through chronic illness lenses. Come and join me and see what I'm up to lately.
Check out those other videos about my chronic illness story:
👉🏻 Low Dose Naltrexone for Fibromyalgia - What is LDN and my experience
• Low Dose Naltrexone fo...
👉🏻 10 unexpected struggles of living with Fibromyalgia
• 10 unexpected struggle...
I appreciate you vlogging on days you feel not so well. There are so many false sunny vloggers who make chronic illness look like it’s nothing. I just want to see someone who struggles like me. It’s not bad or upsetting it is your reality and it looks like my reality too. Thank you for keeping it real 🩷
I agree!! I love it how real she always is!!
Thank you so much for your kind words. It really means a lot to me to hear that my vlogs are helping someone out there. I know how tough it is to deal with chronic illness, and I'm just trying to keep it real and show that it's okay to have hard days. Thanks for being a part of my journey, and for reminding me that by being honest, I'm helping others who are going through the same. Take care and stay strong! 🌟💛"
Thank you. I really appreciate all the support. ♥️
Yes, I agree. We want to hear the good, bad, real life with chronic pain. I have been watching your videos the last few weeks and feel like I know you personally . I love dipping in to see how you are doing. ❤
Sorry for the delayed reply. This message slipped through the cracks. Lol!Thank you so much for your kind words and for following my journey! It means a lot to know that my videos resonate with you and bring some sense of connection. Sharing the real, unfiltered experiences of life with chronic pain is so important to me. It's about creating a community where we can all feel understood and supported. I'm glad you're a part of it. Looking forward to sharing more with you. Your support and check-ins are truly appreciated! ❤
I fully agree with you about the fibro diagnosis, Daniela - that patients have to push for more answers if they feel like there is something going on in addition to (or even instead of) the fibro, or if it gets worse over time with symptoms or new symptoms pop up that you've never had before. Especially ones that are inflammatory in nature. Fibro comes as a second dx for people with many different autoimmune diseases. I actually find it's rare that someone who has had fibro for 10+ years ONLY has fibro without any sort of autoimmune process going on - some may be slow developing, but often eventually something starts to show up in blood work. Thank-you so much for sharing all of this with us. I feel like your experience and the message you bring here needs to be shared to help others advocate for themselves. Sending you so much love and healing! I hope things continue to get better from here with the proper treatment protocol for you now.
You're absolutely right about fibro. It's crucial to stay vigilant and push for more answers, especially when new or different symptoms arise. It's interesting and a bit concerning how fibro often overlaps with autoimmune issues, and you've made a really good point about how rare it is for someone to have only fibro after so many years.
It's conversations like this that really highlight the importance of understanding our bodies and advocating for our health. I'm so glad to hear my experiences are helping others to do just that. Here's to hoping for better health and effective treatments for all of us. 🌟💖🙏
I would not be surprised if your neck X-rays find cervical instability like a lack of curve or CCI lack of curve in a recent study found to be a contributing factor in some cases of fibromyalgia either way Iam so sorry healing vibes all the way to you ❤
Thank you so much for your insight and support. The possibility of cervical instability being linked to fibromyalgia symptoms is definitely something to consider. It's comforting to connect with someone who's knowledgeable about these complex health issues. Your well-wishes and healing vibes are deeply appreciated. Let's keep supporting each other on these health journeys. Sending lots of love and positive energy back to you! ❤️🌟🙏
I would like to divorce my fibro it's not my best friend
Fibro as a spouse? Grounds for divorce, I'd say! It's definitely not the 'in sickness and in health' partner, anyone would want. Wishing you the strength to keep kicking fibro to the curb!
Does anyone else with Fibromyalgia have connective tissue damage? Cartilage, tendons, etc.? Do you notice bad days coincide with low atmospheric pressure systems? The fatigue is a drag! If you can divorce yourself from stress, that would be helpful.
Yeah, I totally understand what you're going through with fibromyalgia and the questions about connective tissue damage. It's interesting you mention the weather impact - I've noticed that low atmospheric pressure seems to coincide with my worse days too. The fatigue is just exhausting.
For me nothing has shown up in regular imaging, but I'm about to get an MRI to see if there's anything more to find. It's a bit of a mystery, isn't it? Just trying to figure out all the pieces of this puzzle. Hoping the MRI might shed some light on things for me. And you're right about stress - reducing it as much as possible definitely helps. Take care and hang in there!
What has causes the damage to.ligements or do you mean triggerpoints
@@Truerealism747 fibromyalgia doesn’t actually causes damage just the sensation of demand. Ankylosing Spondylitis causes damage to the spine mostly as it is an autoimmune disorder. So the immune system attacks it thinking it’s a foreign intruder in the body.
@@tt_looking_glass yes that's what o though the person commeing was talking about it causing tendon damage etc I was interested to no what was the cause CRP is high in fybromyalgia and CFS I believe.may have that checked again
I’m new to your vlogs, but it’s wild how similar my journey is to yours. I was also genetically tested very recently for HLAs, but maybe some different ones? Same idea. My doctor is looking for specific genes that are turned “on” likely due to mold exposure or other factors. I have to wait a month to discuss with my doctor, but the working theory is that CIRS is the root problem and some of these diseases like fibromyalgia, Lyme, lupus, CFS, MCAS, etc. are potentially tied to triggering these genes and the inability to clear toxins, viruses, heavy metals, etc. To think that approximately 25% of the population have this gene makes so much sense considering how common chronic inflammatory illnesses have become. I’m concerned that doctors are categorizing the symptoms into specific diseases and that it’s really all connected. Praying for answers!
I'm glad you found some connection through our journeys. The idea that about 25% of the population has this genetic predisposition really highlights how widespread chronic inflammatory illnesses are and how careful we have to be in preventing toxic exposure.
Sharing our stories and learning from each other's experiences can be incredibly valuable. Here's hoping for some insightful answers from your upcoming appointment! 🌟
Mystery pains stink. I feel like doctors use fibromyalgia as an excuse. I was diagnosed in 2006 and ever since that’s what they tell me it is without doing their job or testing. I tell my husband ok that’s what it is I give!!! Now I KNOW I have medical ptsd because of the docs and I am scared to find new medical treatment.
I'm truly sorry to hear about your struggles with your fibromyalgia diagnosis. It's incredibly challenging when your concerns are being dismissed. It's understandable that after years of such experiences, you might feel apprehensive about seeking new medical treatment and even develop anxiety related to medical interactions. Medical PTSD is real!
It's a big step to consider seeking new medical treatment, especially when past experiences have been so disheartening. Yet, taking care of your health is important, and you deserve to be heard and supported. Starting with small steps and armed with knowledge and advocacy for your well-being can lead to better experiences and outcomes. Your health and peace of mind are worth fighting for.
How did you get your insurance company to approve the naltrexone in low dose? I'm trying to get it, but having issues between insurance and pharmacy.
I had to complete a form to obtain special authorization from my insurance provider. This process required my doctor to submit detailed information, and the insurance company had to grant approval. The procedure was time-consuming, largely due to the insurance's stringent requirements regarding the medication's ingredients and the amount of time it took to compound it.
I was tested last year for this condition that you are being tested for. I don’t know if they looked for a gene exactly but they did do a special MRI and then some bloodwork looking for certain antibodies or something. It came out negative for me.
Yes, it was blood work they did and they look for a protein in your white blood cells. IF you have the protein it means you have the genetic mutation. I'm glad they checked you. I'm surprised with all my years of back pain and how it kept getting progressively worse no one ever checked. And I had been seen by a rheumatologist several times before. When I was younger it got blamed on being a mom of five, now that I am older it got blamed on menopause. There always seemed to be a reason to not take it seriously. 😒
Wow, my friend, I can't believe I missed this video! It sure seems like you have a lot more going on than Fibromyalgia! It seems like when Dr's can't figure you out, they just lump you under that category. That was almost me! I would not take fibromyalgia as an answer (back in 2010)....they were also looking at MS and Parkinsons later... I went digging into my own research, sought out an LLMD, and tested positive for Lyme and other co-infections with extensive testing. I knew there was something more going on with you too. 😢. I'm SO sorry, and this news makes me incredibly sad. Please hang in there, my friend. You have my prayers 🙏. I hope you and your family have a very merry Christmas!
Hey, thanks for checking out the video and for your kind words! It's true, fibromyalgia can be a bit of a catch-all diagnosis sometimes, and it's really important to dig deep and explore all possible health issues. I'm glad to hear you were proactive in your own health journey and found answers that worked for you. It's definitely a reminder for all of us to stay curious and persistent about our health. Thanks so much for your empathy and prayers; they mean a lot. Wishing you and yours a very merry Christmas too. Take care and let's keep supporting each other on our health journeys
Ime testing for Lyme soon to.just lost my mum to severe ms but I've found out we both have had heds as did grandfather and his mother grandmother
@@Truerealism747first of all, I'm SO sorry to hear about your mom.😢... my mom and sister both have MS. my mom, as far as we know, got it from EBV, my sister got it from Chronic Lyme! I wish you nothing but luck, and please get extensive testing done. If an S.O.T. infusion for lyme (natural dr) is applicable for you, do it. That, along with other methods helped to cure me. They expected 5 years on my recovery, I was cured in 2 and 1/2 years 🙌. I still have other chronic health issues, but that was my biggest one. Good luck, and much love❤. I know how AWFUL Lyme is.
Hi Daniella, keep up the good fight 👏
Thank you so much!♥️
I have chronic pain in my left SI joint for 5 years now and 1 1/2 years ago they gave me a special MRI to check for ankylospondylitis, I came back negative for it but it sounds horrendous to have. Doctors definitely just fob us off with a fibro diagnosis a lot when it could be something else. I'm going to approach my doctor soon (i have some ongoing issues currently so i feel like i can't do this just yet) about ehlers danlos syndrome as i have a lot of bother with hypermobility. it's so tricky.
I'm sorry to hear about your chronic pain and the struggles you've faced with diagnosis and treatment. It's really frustrating when doctors default to a fibromyalgia diagnosis without thoroughly exploring other possibilities, especially when you're dealing with specific symptoms like SI joint pain and hypermobility.
Your proactive approach to discussing the possibility of Ehlers-Danlos Syndrome with your doctor sounds like a wise step, given your symptoms. It's important to advocate for yourself, especially when you feel that there might be more to your condition than what's currently diagnosed.
I hope you can address this with your doctor soon and get some clarity. Managing ongoing health issues is complex, but getting the right diagnosis can make a big difference in finding effective treatments and strategies to manage your symptoms. Take care of yourself and best of luck with your medical journey. Stay strong! 🌟💖🙏
@@tt_looking_glassmy friend as as and is totally solid spine at 53 at 19 to 21 he had pain now no pain his father had it but had pain all life and skin issues it's highly comorbid with ADHD and ADHD makes feal more pain my heds diagnosis with asperger's add makes pain worse so ime awaiting to try MADD meds for pain but alas shortage s
Thank you for sharing your experience. This is all new to me so it's great to hear other people's experiences.
@@tt_looking_glassmy message has gone somewhere youtube😊
Your Christmas decor looks so cute!🤍🎄
Thank you!! 😊
What a mess, everything sounds so complicated and confusing! At least you're getting a more accurate diagnosis and hopefully the right treatments. I agree about the fibro diagnosis so many things get blamed on it with no further testing for other things. I would be in a wheelchair now if i didn't push for further testing and appropriate specialists. Ive had 3 joint replacements that i was told the pain was fibromyalgia and they only recommended p/t. I was bone on bone advanced osteoarthritis so glad i have new hips and knee! God bless you as you continue your healing journey ! I Love your vlogs and content! Do what you can when you can, we understand!
Yeah, it's been a total whirlwind with all these medical twists and turns. But you're right, getting a more accurate diagnosis is a huge step towards the right treatment. It's crazy how often things get chalked up to fibro without looking deeper. Your story about pushing for more testing and finding out about your osteoarthritis is super inspiring. It just shows how important it is to advocate for ourselves. Big congrats on your new hips and knee - that's amazing! Thank you for the love and support for my vlogs. It's comments like yours that keep me going. I'll keep sharing as much as I can. We're all in this together. Bless you too, and let's keep on our healing paths! 🌟💖🙏
I appreciate you! 😊
When you said you feel paralyzed and don’t want to move it’s my daily struggle . I feel stuck and tired always … when it’s to painful to move it’s hard to get going . Look up Barbara O’Neil if you’re haven’t heard of her she’s lovely and very soothing ..I feel like you’ll love her
Showers make me tired oh yes indeed ….but it helps loosen my joints ❤❤❤
Oh my gosh you are doing ket infusions ❤❤❤❤ I don’t have access yet here in the US . Only to troches …which is 100dollars a month . It’s been helpful … so much of my issues Mirrors yours …just getting these tests alone takes me awhile to recover . Does this happen with you too
i love that music, what or who is it?
The songs used in this vlog are: (in order of appearance) Muted by Starring - Reload by Killrude - Stay True by Lars Eriksson. I'm glad you like them. ♥️
Please keep sharing your experience with AS. The more I hear about it, the more I'm expecting it to end up being the cause of my pain too...and it scares me since it's not as commonly talked about as other chronic pain causes.
I completely understand where you're coming from. AS is a condition that's not as widely discussed as other chronic pain issues, which can make it feel isolating and scary.
I'll keep sharing my experience with AS. It's important to raise awareness and provide information about less talked-about conditions. Hearing from others who are going through similar health challenges can be incredibly comforting.
If AS does end up being the cause of your pain, know that you're not alone. It's okay to be scared, but also know there's hope and ways to cope.
Sending you strength and courage as you navigate this journey. Take care and stay strong! 🌟
I can imagine you have some mixed feelings about this potential new diagnosis?
Thinking of you ❤.
Absolutely, you hit the nail on the head - it's a real mix of emotions with this potential new diagnosis. On one side, it's kind of overwhelming and a bit scary to think about another health challenge. But on the other, it's a relief to maybe finally have some answers and a clear direction for treatment. Thanks so much for keeping me in your thoughts. Your support means a lot during times like this. Lots of love back! ❤️🌼
This was a great video, and as much as you hate having an extra diagnosis, it does help a lot to have something on paper, proven, and then treatment that actually helps some symptoms. That’s how I feel about the mast cell activation syndrome, diagnosis that they finally found and I’ve been under treatment and it is helping quite a bit. I’m looking forward to seeing if treating the master cell activation syndrome that I never knew I had will actually calm down all of my other conditions, so far it seems like it’s a possibility! But it is a lot of work and research on the new condition to make sure I get it under control🤪
Thank you. I totally get what you mean about getting a new diagnosis. It's a mixed bag, right? On one hand, it's like, 'Oh man, not another thing to deal with.' But on the other hand, having a clear diagnosis can be such a relief because it means you can start getting the right treatment. It's awesome to hear that your treatment for mast cell activation syndrome is making a difference. For me, it made a huge difference. I used to have 2-3 anaphylaxis a week and now that I am being treated I get one every 3 months or so and that is usually when I slack on my med. It gives me hope that getting on top of this new challenge could help me further. It's a journey for sure, but we've got this. Let's keep pushing forward and learning more about our health. Here's to better days ahead! 😄👍🌟
@@tt_looking_glass yes to all that!
I’m so sorry, Daniela. You sure don’t need another chronic illness.
When I first went to a rheumatologist, she thought I had Ankylosing Spondylitis because I have Ulcerative Colitis and it’s more common in people with UC..
But she sent me for x-rays and didn’t find anything so she said it must be fibromyalgia.
I had no idea there was a form that doesn’t show up on X-rays.. I wake up with pain and so much stiffness and then after my shower I start to move around and feel better… then late afternoon I feel like I’ve been run over by a truck. I am sorry you’re just now finding this out.
I’m thinking of you and praying you get some better answers and better treatments!!
You have had a very long journey and you deserve some relief! 🙏🙏🙏💗
Hey, I'm really sorry to hear about your own struggles with getting a diagnosis. It's so frustrating when you're in pain and searching for answers, and then you're just told it's fibromyalgia without thorough investigation. You've been through a lot, and especially the stiffness and pain pattern you've described sounds a lot like Ankynlosin Spondylitis. You should ask for the blood work I did. It sure is much cheaper than MRIs, CAT scans, X-rays and ultrasounds. Less invasive too.
I appreciate your thoughts and prayers so much. They mean a lot during times like this. I'm hoping for better answers and treatments for both of us. We both deserve some relief and better days ahead. Thank you for your kindness and support. Sending you loads of strength and positive vibes. 🙏💗✨
Thank you Daniela. I will make an appointment and ask for more testing. It has been quite a while since I saw the rheumatologist. I was also told that fibromyalgia does not get worse with age. I was diagnosed in 2017 and I feel that the stiffness and pain is now worse. I feel like when it comes to these health issues that affect women more often
.. doctors just want to say it’s depression, perimenopause or fibromyalgia. Pick one! It’s honesty infuriating.
Hang in there… I hope no more break ins.. I know that was scary! We have just recently had a couple guys roaming around our neighborhood at night trying to open people’s car doors. Everyone is seeing them on their security cameras but they have hoods up and you can’t see their faces. Ugh!
@@tt_looking_glassdoes as show up on mri always
So sorry you don't look well. i have had fibro for over 4 decades, and all the changes there has been regarding it. Love your channel and what your doing to hellp others, and i know what a bad day feels like. I hope this passes very soon. my thoughts are with you.
Hey there, thanks for your kind words and understanding. It's been a tough time, but hearing from someone who's been navigating fibro for over 40 years really puts things in perspective. You must have seen so many changes in how fibro is understood and treated.
I'm really glad you enjoy my channel and find it helpful. That's exactly why I do it, to connect with others who get what this journey is like. Thanks for being there and for your empathy. I'm hoping for brighter days ahead for both of us. Your support and thoughts mean a lot. Take care and let's keep supporting each other! 🌟💕🙏
Has anything shown up in your results after 40 years
@@Truerealism747 not regarding Fibromyalgia but they just found the positive markers for Ankylosing Spondylitis.
@@tt_looking_glass I've just had another MRI awaiting results.in 3 months see consultant neurologist but would think it would show something after 7 years fybromyalgia 26 years CFS.my friend has it but totally pain free now is spine is totally fused and can lift 300 kgs amazing but his father had it and had pain all his life he told me it's related to ADHD to.do you have pain in the spine then? Mines in muscles and fascia your videos are great by the way you put alot if work in them I no that's hard to with illness
@@Truerealism747 my pain has mostly been general including muscle, fascia, nerves… but in the last year the pain has also been localized on the sacroiliac joint and around scapula. I hope the MRI sheds some light on your condition. It’s hard to get properly diagnosed because so many symptoms overlap from different conditions.