My Fibromyalgia Journey (the background)
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- Опубліковано 17 вер 2024
- Sharing my health background, the horrific year I experienced in 2014 and my journey to a fibromyalgia diagnosis.
** I am an Aussie Mum of two teenagers (3 if you count my husband) and 2 Golden Retrievers. I have been a vegetarian for 10 years and have recently been diagnosed with Fibromyalgia. I film a variety of videos, including packing & travel videos, organising and decluttering shopping hauls and day in the life vlogs.
You have such a positive mindset about your illness which is good to have. You know I've been on my own health journey along with you and my diagnosis made me feel somewhat useless, but I've never thought of it like you, that no damage is being done to my body... That's a good frame of mind to have! Keep well Libster xxx
ArtJourneyUK Thanks Lily. It's funny, because while fibro isn't the best thing to have (pain with no cause is pretty stupid after all) but it's so much better than many of the other chronic diseases out there.
I'm happy to see so many supportive informative vlogs on UA-cam about fibromyalgia! I've had fibromyalgia for about ten years and was diagnosed just last June. Thank you for talking about and sharing your stories/ experiences ! I'm finding I'm fighting the urge to be bitter, due to some negative responses to this disease.. Listening to other fibro sufferers has been SSO good for me lol. I feel less alone.
+carcar brad Fibro is such a horrid thing to have. Being in pain for no good reason
just sucks doesn't it? After diagnosis there is definitely a huge
learning curve and time of acceptance. I'm now a year down the track and
doing a lot better, but on the bad days it's hard not feel that life is
unfair (even though others have things a lot worse). Hugs to you. Hope
you're having a good day :-).
I found your Channel via decluttering. We are so much alike. I'm from Sydney, trying to declutter, crafter and suffer from fibromyalgia. This humidity is driving me crazy
missrugbyaust So glad you found me. We do have lots in common. I used to do a lot of scrapbooking, but since starting UA-cam it's gone by the wayside. I miss it but just don't have room for it in my life anymore :-(. I know I need to do a big declutter of the scrapbook room and donate most of my stuff... but I need energy for that job. Oh, the humidity is horrible isn't it. The Summer months are always my worst (as you know from the videos that's how it all started).
You know there is meetings with the Chronic Fatigue/fibro group, which I find very helpful. I think there is a meeting in Wollongong. I attend the Inner West Group. It's better to ask via the VIC society. I've also been able to get disability parking, which I've found very handy. I think one of the biggest issues that people assume "you don't look sick".
I'm sorry you have to go through this journey. You're amazing.
shesinherapron Awe... thanks Kimmy.
OMG, Thank you so much for posting this video. I don't even know you and only stumbled across your video's yesterday but I love you so much I could cry. ( if that is a little dramactic ) but you have pretty much described me to a tee other than my pain has been a little more debilitating. I have all this information printed out now and I am going off armed with it to my doctor tomorrow. I have had all this pain for over 6 years now and did a lot of doctor shopping because none of them really cared and once I put on weight they blamed everything on my weight ( even though it all started when I was at a healthy weight range) But now I have research it I have every single symptom and what you described with the lung problem I have had for just over a year now. My pain extends to every single part of my body now and some days are just terrible like the last few days I have had a major flare up in my foot and back. It literally feels like someone has broken every bone in those parts. I have all those tests too for the 2 arthritises and different autoimmune diseases but they always come back clear. But I did recently get diagnosed with thyroid cancer and have had my thyroid taken out completely now over 2 surgeries and I am waiting to do RAI treatment now. Anyway thank you so much for your video I loved it and I feel like crying cause I really thinks this is what is wrong with me and if I can get a diagnosis It feel like there is something there to explain everything and people will believe more when I say I am in pain instead of feeling like people think I am faking it. So thank you so much for everything now I just have to get my doctor to see if it is that.
karen maffina I feel the same way about Libby's talk, it's so so helpful to hear how similar her story and others are to mine. I also have been loaded up with info I'm going of to research because of Libby sharing her journey. All the best with your journey Karen :)♥
yes this has been great. I am so glad that she shared her story and that I have stumbled across her. All the best with your journey too cherylene
karen maffina HI Karen. So glad you found my channel and right in time for this video. I totally get what you're talking about and so sorry to hear how you've been suffering. I had days and weeks last year where I barely moved off the couch. I'm so lucky that I had a doc who was like me and would keep pushing to find out what was wrong, and then a rhuematologist who would diagnose fibro. From what I hear there are still many docs who don't believe in it. Don't give up. Keep pushing and searching until you get a diagnosis. Oh, and crying is good. I was telling of a cry I had last year and someone told me how it was theraputic. And they were right. I felt so much better afterwards. So let those tears flow. Pain sucks and we are entitled to cry because of pain and how it effects our life.
I'm so glad you finally have a diagnosis, and I wish you luck in managing it. Here's to many many good days :)
Lisa Foster Thanks so much Lisa
Thanks for sharing this Libby. Wow, what a journey you have been on. I really hope things continue to get better for you now that you know whats going on. I really want to see you thriving :) I completely whole heartily believe that diet will have a huge impact on your condition. We are here for you! xx
awww, Libby hun I started watching your videos just before you found out about your lung infection (or what you thought was a lung infection).
I actually luv watching your videos! would always stick with you hun, am so so sorry you have to go through fibro.
You are a pleasure to watch even when your not well, you still manage to smile for the camera.
you have a gorgeous family. huge hugs from me, Luv Diana xx (in Vic)
Diana does it Thanks Diana. You are too sweet. I'm absolutely amazed that so many great ladies want to share my life with me - even on the bad days :-). It's really been so helpful to me.
Gentle hugs my fibro sister!!!! Thank you for sharing your story!
FibroFightingBarbie Thank you. It's amazing how different the good and bad days are isn't it?
yes it is! got to cherish the good ones!
23 years ago I began having mild muscle pain in the neck and shoulders after spine surgery. My hands also began hurting badly. Over the years fibro has progressed. Other symptoms came along one by one. Mainly the top half of my body at first. The burning pains between the shoulders and around the ribs are the hardest for me along with the fibro fog. I too get worse in the summer, need to have air to breathe so never far from a fan. My hands are hurting all year round now and walking is much slower due to stiff muscles in the thighs. I feel for those in the early stages because of the confusion and so many questions about Fibro. I have learned to accept it, pace myself, eat well, rest as much as possible, do things when I can, changed my life-style and Fibro and I live in relative peace together. Just know your limitations, never let it get the better of you. Be the best you can be. Never feel that you are a lesser person than you are. You did not ask for this illness. You seem like a fine woman with a supportive family. I wish you all the best for the future. Hugs from Frangi, England x
Thanks so much. Your experience sounds a lot like mine with things developing slowly over time. My 18 year old has also been diagnosed with fibro but their symptoms seemed to hit all at once :-(.
I had no idea that you were losing your hair Libby. So sorry. I still think that you have beautiful hair :)
Been Watching your videos since last year and it helps me a lot in not feeling like I'm alone with my autoimmune disease. Thank you for this video and all the other ones that you have Libby :)
Rosy Kia I lost a LOT of hair around the middle of last year but it's started again. I'm just so lukcy I had a lot of hair to start with!!!
Xx was interesting listening to your journey of how you were diagnosed with fibromyalgia . It's amazing how many fibro people have the same symptoms . And some I have you don't and vice versa . Ok hun stay safe and soft hugs . Xx🌹
mary granger Hi Mary. There are so many symptoms that we all experience. I'm lucky in that I sleep well (until I wake up anyway) which I know a lot of fibro suffers struggle with.
Hi Libby ,Im one of your regular followers . I have just been told i have Fibromyalgia 2 weeks ago .
Im so glad you put this vlog up im watching now . If you ever find out anymore new information or have more to say about it .
Can you do more vlogs about it . im trying to find others that vlog about their experience about it .
+tracy lee So sorry to hear about your diagnosis. I really should do a follow up video (I had planned to do one every few months but over a year later and I haven't). I'll try real hard to do one in the few weeks but feel free to remind me again if you don't see one soon :-).
Hi libby thanks heaps for sharing your story. Im 37 and was diagnosed with chronic fatigue and fibromyalgia in 2012. Its been a rough road, learning how to manage it every day. There are good days and there are bad days. I was diagnosed as insulin resistant in 2011 after a miscarriage and then later diagnosed with type 2 diabeties. Been on 2000mg of metformin since 2011 and wow has that been yuk. It upsets my tummy alot and i have days where i just want to stay home so i wont have to face the world :( i have one day where im not tired, im not achy and i can leave the house take my daughter to school then do shopping. But then the next day im written off in pain and exhausted. I am a nurse and had to give up my job in june 2012. Havent been back to work since. I miss it so much :( i get reg physio and see a specialist in liverpool hospital. That helps and keeps me on track. Ive learnt so far the best way to keep going is to learn the triggers, then try to manage how i feel and look after my health more better. I stopped having junk food. Changed my diet and try to be active atleast a few times a week. Walking is about the only thing i can do thats not so harsh on my body. Wishing you well on journey and thanks so much for sharing yours its nice to hear there are others out there that feel like me every day and im not the only one battling on.
Mia Andchar Hi Mia. Thanks so much for sharing your own journey. We obviously have quite a bit in common. Must have been hard having to give up a job you enjoyed. I know I certainly couldn't have kept working last year when I was at my worst. It's a huge learning curve isn't it? I'm amazed at the difference between the good and bad days. And, yes, diet is hugely important. I need to work more on getting in some type of movement on the bad days - esp, when it's more than one or two days in a row.
I'm just shocked at the similarities to what your describing and what I've been living through also. I'll have to go away and think about what you've said and do a little more checking up on fibromyalgia and insulin resistance. I'm pretty comfortable with my diagnosis of psoriatic arthritis and diabetis type 2 but because of your path being nearly identical in some instances to mine it raises so many questions.
More and more I'm thinking I need to start vlogging just for the sheer fact of keeping those records. I forget dates and symptoms and all sort of stuff that it would have been helpful to be able to go back a few years and here what my past self said. It's pretty amazing and I'm not bored with anything you talk about, it's very easy to hear you tell us how your feeling in the day. And I understand what you talk about not being able to express that each day at home. My husband will often ask me how I am and all he wants really to hear is a yes or no because if I go into a big story about it, it just washes over him and he walks away. Not because he doesn't care but I just think it's to much pressure for loved ones to always hear it, which is why the friendships we make on social media are so precious and loving for us.
I ended up on youtube because I wasn't physically able to do anything let alone go outside the house because of pain and fatigue. For about 6 months I couldn't even work a mouse on the keyboard without getting so tired and falling asleep and was taking panadeine forte every six hours for nearly 8 months and most of that time was counting down the last hour so I could take the next dose.
That clean cuisine challenge that I'm on now has had really good results for me so far because I feel so less stressed and the anxiety I had is only with me sometimes instead of always. I actually enjoyed all of this past week at work, although the fatigue and nausea still comes on but there are changes so I will continue with this and keep tweeking it until it works excellent for a complete life style change. Thanks for getting me onto it.
Well onto a lighter note, we have lots of water here in brisbane but so far everything with the cyclones and rain fall has not been devastating like it was expected. Today is very rainy but lovely and free and we are so far out of any flood path, woo hoo :)♥
Cherylene I'm pretty sure that most people who have diabetes, have had insulin resistance beforehand (probably for years). Not sure if the insulin resistance is still a thing once it turns into diabetes. I'm lucky in that I've been seeing the rheumatologist for so long as he has a record of my symptoms/tests over the years, but yes, vlogging last year is a good record if I need to go back. This year i've a got a diary and am filling in how I feel in the AM, PM and evening every day to track it all. Will be easy to take into the doctors too if I need to. I just rewatched my vlog from last Feb where I diagnosed myself with fibro!! I did mention it to my GP at the time but she said everything else had to be ruled out first. Wish I'd actually gone to the rhuemotologist back then, as he might have been able to diagnose the fibro earlier. But maybe not - who knows. UA-cam is amazing for connecting with others and not feeling so alone when you are stuck at home. That must have been a very hard 6 months. Clean Cuisine is great isn't it? Ivy is just awesome. So glad you've found it helpful. It's certainly a journey and it takes time to develop all the good habits you need for long term good health - or at least improved health. That's amazing that you were able to enjoy your week at work - that I real improvement for you. Keep it up. You have nothing to lose and everything to gain.
❤️
Thank you for this information! Is your fibro worse when it's cold outside? I, as you know, live in Finland, and even though it's beautiful here during winter, my fibro is always worse when it's cold :( i have to move to a warmer country :)
Martina Frilund My fibro is always worse in the summer, when it's hot and humid (so February is the worst). For many years I'd be pain free for all of Winter, but the last few years it's just eased up a bit. Who knows what it will do this year?? But it doesn't get real cold here so maybe that's why. Mind you we visited Alaska (in Summer) which was really cold for us and I didn't suffer over there.
It infuriates me how everything is linked to weight anymore. With my string of "issues" and what I call my "down hill slide" - not once did anyone ever say my gaining weight could be an ISSUE created or worsened by something else - it was always that extra weight WAS the issue for everything else. Frustrating. I too am insulin resistant. I would love to see updates on this issue and how it goes for you, maybe we should keep an insulin resistant joint log. ;) I hope you feel fabulous soon!
The insulin resistance is very interesting to me as I have diabetis type 2 and it looks like if I had been tested earlier by my dr instead of her 10 years before just asking if diabetis was in my family because of symptoms I'd been having, when I said no she just wiped that on my record as being anything to be concerned about. It's up to us to do our own research it seems and work out what could be wrong with us and then go get the testing. It's an all round frustrating delema. Weight has always been a thing my drs have concentrated on but only by telling me I should loose weight for my health but never going into the why or what repercussions cold result from not loosing weight and eating healthier. UGggg at least we all have each other to discuss these problems:)♥
CocoPop1971 I understand being overweight is the cause of lots of things, but so annoying when if an answer can't be found then that is the reason given. Will definitely give updates every few months. My GP wanted me to try metformin again (to aid weight loss with insulin resistance). I agreed so we'll see how that goes. If I can keep losing even a small amount of weight every week then that will be great. I DO NOT want diabetes, on top of everything else.
Cherylene Yes, insulin resistance is the precurser to diabetes, so I'm glad it was found early. An abnormal reading showed up on one of my blood tests so my GP ordered a glucose intolerance test. From what I've been told it sounds like most people who are overweight and struggle to lose weight are insulin resistant. When I told one doc about my new diagnosis, he was like, der - of course you have IR :-). I love my GP (the one I had last year during all this is good, but my current one - who was overseas last year is so on the ball and so caring). I go back to see her on Wed. So hope my blood pressure is back to normal.
Lyrics doesn't work for everyone, but for me it started working at 300mg a day. I took it morning, midday, and night. Unfortunately I have been off it for a while, due to no insurance and it is extremely expensive in the U.S. I hope you find something to work for you.
Ugh Auto correct (Lyrica)
Have you given up wheat? Have they checked your thyroid including T3, T4, Free T3& 4? Have they checked vitamin levels including D and magnesium?
bonniestanleyphoto I did try a wheat free (and pretty much everything free) diet for 3 weeks with no improvement at all. I have had some thyroid checked but not sure what. And yes, vitamin levels are all good.
Try longer than 3 weeks for gluten free. This can also mean eliminating corn as that can cause inflammation as well. Everyone that I have talked to this has helped so much. The difference it has made with me is huge. Having a thyroid problem will cause hair loss.
bonniestanleyphoto I might revisit a gluten free diet later. I had a lot of problems finding gluten free foods that weren't full of preservatives and other nasties. Currently I'm on a plant based diet.
Hi, My name is Molly. You look just like my Aunt, whom also has fibromyalgia, along with me and my grandma.
Molly Rosa So sorry to hear you have fibro Molly. It sucks getting it at my age, but it seems terribly unfair to get it so young. I'm hoping my daughters don't have/get it, but I'm thinking maybe Athena does. I guess the ONLY good thing is that you aren't alone and have your Aunt and Grandma for support.
I have heard Lyrica side effects can effect breathing and cause inflammation and swelling, good luck
Liked and subbed :) I love hearing and watching others fibro journey/stories... I've recently started vlogging my life with fibromyalgia and POTs Syndrome and would love if people would check out my channel & subscribe... Anyway keep us all updated, I've been gluten, meat ,wheat & dairy free for 5 plus years and it's amazing the difference it's made. I totally get what your saying about a base level of pain, you just kind of learn to live with it . I take morphine daily. Fibromyalgia is so frustrating and misunderstood, I'm looking forward to watching more of your videos and getting to know you more xx
It certainly has been a journey hasn't it :)
KatesPlaceDIY Yep, and I'm guessing this in only the beginning. But hopefully it will be an upwards journey from now on :-).