Wow, thank you for your lovely comment. I felt I had no one around me to relate to, hence starting this channel. So even though I wish it wasn't happening to you/others.. It's comforting for me too 💜 Creating videos is a lot harder than people would think, but I love it! It's helped from day one of diagnosis to have something to put my pain into, if that makes sense lol x

Hi Sam 👋🏽 The Gaslighting is unreal isn’t it, and from those that are meant to be trained to look at things differently/openly makes it even more of a kick in the teeth. That being said, as scary as it is you have to keep pushing through & fighting for yourself as sadly no one is gonna do it for you. It is very real & nobody understands yourself better than you so go in with a ‘Take no shit attitude’ and make them listen. I’m glad you can relate but sad at the same time because I wouldn’t wish this on anyone. I am however feeling some improvement since being on Pregabalin & I have also had my first Lidocaine Infusion - So there is hope for us yet! You can do it ❤️ Thank you for your lovely comments too 😊 xx

Thank you for the sub too 😘

I went through that with my Dr. , I changed to a different dr in the practice that I heard great things about. She listened, examined did blood work to rule out lupus etc, and after all of that she gave me the diagnosis of fibro… in 3 visits I finally had an answer, one I was trying to get for almost 4 years with my old dr. Don’t be afraid to change drs, you may be better off💜

Same here

It’s not just me then! I have so many nail supplies, as well as makeup. I love doing nails but I’m more drawn to makeup these days as I can do that with less bending of my neck. I tested myself last week, did a set of basic Gel X nails in two hours (prep to complete). Was well proud of myself.. Had a flare for 3 days after! 😩 It’s important we keep doing what we love though ❤️

Sending hugs 💜

Awww thank you! ☺️ I have so many ideas of vlogs I want to do but the brain fog like you say makes it so hard to articulate. I know I need to just grab the camera & go with it but I overthink it and put too much pressure on myself. I’m hoping to film something very soon though! 20 years sounds impossible, but you’re proof it isn’t 💜

I also find it frustrating not to be able to articulate my thoughts!

It’s so annoying to constantly have that word or sentence at the tip of your tongue!!

It’s literally mind boggling isn’t it! Only those that know can ever REALLY know what a nightmare it can be! I hope your week is treating you well 💜 xx

Hi Jenny 👋🏽 Nice to meet you! I’m glad you finally got heard & the right diagnosis. It can be very tearful days with all we have going on, yet none of it visible to an onlooker. Overwhelm is an understatement 💜 Awww I’m glad your Dad is doing well 😊 What a trooper! I was diagnosed 2 years ago in May but I was definitely poorly before then. No idea how long it had been going on for really as I had so much going on and I’d started making changes to my life that could have “triggered” Fibromyalgia out of hiding so to speak 🤷🏽‍♀️ Thank you so much for subscribing ❤️

@@ellochaos diagnosed 1998 neurosthenia just found out this year which is CFS fybromyalgia 6 years and pits in the middle sure there all same thing all started after a fall now diagnosed Asperger's hsd link to all these thing brain spinal chord are diffarant had SPD as a child drs didn't no then is fybromyalgia austistic burnout with spd

Wow sounds a lot! Bless you. I guess it makes sense that they would all be interlinked. I’m currently in burnout and it’s just annoying!! I hope you’re being kind to yourself 💜

@@ellochaos doing best to thankyou always have one area the body pain constant upper body.does yours move over time? Albeit years.do you have different pain with your burnout ime told it's also linked to OCD subconscious fear.

@@Truerealism747 Again I believe it makes sense that it would all be linked. In my experience I’m always on high alert, basically in fight or flight, I think due to having ADHD, OCD Bipolar & Fibro. I think it’s a never ending loop of exasperation! Especially if diagnosed later in life too as you’ve spent your life doing your best to “fit in” not realising that you aren’t supposed to.. Quite sad really 🤔 I do have all over body pain, lower back, hips, knees but I am in constant pain with my upper body, especially my shoulders, neck & base of my head and my jaw! It varies in intensity. Depending on how much I’ve done or how little actually. I find my pain is worse for keeping still, yet I can’t be on the move too much either. There is no middle ground 😩 I also have awful Restless Leg Syndrome, it was a lot better for a while but at the moment it’s interrupting my sleep and I wake up in pain and nausea from it. For me burnout is basically all systems shutting down to a standstill pretty much. I’m fatigued, exhausted, body feels heavy, light sensitivity and all around feeling weak. I can’t really eat because I haven’t got the energy to cook nor hold myself up long enough to eat much. I had rice cakes with a slice of cheese for dinner last night lol. I can’t really be around people because words are hard to find, I think I just grunt at them 😂 So apologies for this long post.. I know what I’m trying to say so I hope what I’ve written makes sense 🤦🏽‍♀️

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Lol I'll be using that one.. "Fucking Mad Syndrome!." Definitely makes you feel as though you are at times! Sorry to hear of your accident 💜 The thing is I'll write things down but then I forget that I've written it down, or where I've written it! (Phone Notes, Sticky Notes, one of my 10 paper pads lying around 😂). I live in Pj's or hoodies, I wanna dress more like a grown up but it's so uncomfortable! Thank you for subscribing 😃 I hope you're enjoying your weekend 🥰

Thank you for watching & subscribing 😊 Yes it does feel as though your being punished at times, especially when it’s all new and have no real understanding of what’s going on yourself. I was living on smoothies & rice, if I ate at all. Tried FODMAP, tried it all. I now eat pretty much what I want but keep it simple. Still have that hunger feeling but can’t eat though. Nothing ever feels all that appetising 🤷🏽‍♀️ I’ve been doing a lot better since changing some things up, medications etc. I need to do a sit down video on it. I hope today is treating you well 💜 xx

Yeah some days the best I can do is grunt lol. This illness brings a lot of frustration! It's hard for people to understand because they can't "see" the pain.. Those that don't have it will never understand. Lucky buggers 💜

I know it’s hard but try and get to your appointment. You deserve to be heard! 💜 Thank you for watching ❤️

I def will! Taking a couple of weeks off this month to do all of the testing. Thank you for sharing! Sending you light, love, and healing energy 💜

That’s great! 😊 I hope all goes well for you ❤️💫🦋 xx

Notice no appetite, even when make something I like.. usually end up giving to dogs, chickens...11 years. Pain in body especially legs is the hard part. Just realized it's brain fog and not earlly set dementia! Smile yaaay!! Be 59 next month. Passed California State Bar at 58.. so at least something is working.. wishing and praying for everyone with Fibro blessings and pain free days!

Is actually quite scary isn’t it! It’s hard to say about my appetite because I have other disabilities that really ply a part in that. As well as other medications. But I guess it does because when your in overwhelming pain, it makes me nauseous causing me to not want to eat. I tend to do a lot of snacking rather than full meals 💜

Congratulations on passing the Bar! 👏🏽💜

Did they say it was gone, or maybe in remission? From what I’ve researched you can have periods of time where you feel so much better that you question if you even had it.. Until it returns with it’s not so subtle reminder! 💜

You don't just get over fibro It can hide, then when the stress comes out...BOOM...Hello, fibro!😢

Yes! Exactly that!!! 😤😫

@@sharonshearouse5611 exactly. It never went away. My symptoms have never gone away. It's worse when it rains. And during the winter.

Gentle hugs to Australia 💜 Thank you for watching 😊

So easy to stay in your head! Especially when your less mobile & bed bound, be in your head is all there is. I watch a lot of KZfaq (too much 😂). My go to is makeup at the moment. Or a set of nails depending on how “well” I am & how much neck bending I can do that day 💜

I can draw on my face but anything on paper I’m hopeless 😂 (unless it’s poetry). I’m glad you’ve found something that works for you 😊

@@ellochaos make up makes everything better!!🤣💕

@@Angel-qf6if If only! 😩😂 It is like therapy though 🙌🏽 xx

It really is. Are you feeling any better today? 💜

@@ellochaos yes thank you for asking x

I clearly missed that you’d left a comment.. I’m so sorry!! I hope all goes well with the Rheumatologist, you’ll have to let me know how you get on 💜 It’s hard for me to say what works and what doesn’t in regards to the pain from touch & sensory, because some days I can’t bare anything loose on my skin because every movement of the clothing hurts, so I wear tighter fitting clothes like leggings for the pressure which relieves the pain somewhat. Other times I can’t bare anything tight on my skin so I wear baggy clothes. I understand what you’re saying about bedding etc, same applies. Sometimes I need a weighted blanket, other times I need as little cover as possible. I live in gym wear and tracksuits or nothing but my underwear (as little as possible). I always feel like I have sunburn from face to toes and my skin itches to the bone!! It’s fecking awful. Cool showers, antihistamines, Lycra materials & fleecy style bedsheet is what I do too. Sorry I’m not much help, it really is the guessing game and figuring out how you are on the day and what works for you 💕

Check for tick bourn illness

I tend to have more flares in the summer. I can’t handle the heat anymore 😩

Heat wrecks me as well-- and I'm stuck in Texas 😣

I'm sorry to hear that you know exactly what I mean 👎🏽 I hope today is treating you well 💜

@@ellochaos Thank you, hope your doing good. Yes unfortunately I know what you're going through, was diagnosed about 15 years ago . I know I used to annoy my daughters 😂 forgetting what I'm doing or going half way there to do it, or putting things in places they don't belong , like milk in cupboard, and keys in fridge 😒the brain fog gets horrible.

Wow 15 years! What things have you learnt over that time to help with it? 😂 yes to all of the above! Except I only have fury kids so they only get annoyed when I forget to give them their treats! 🤣

@@ellochaos When I was first diagnosed I was told to take NyQuil at night that will help my pain and also help me sleep. During the day I take CBD gummies, as well as Kratom teas . Not sure how long Kratom will be around anything natural or homeopathic they try to get rid of . I also use salonpas pain patches. I have polyneuropathy as well so I can't do anything cold .

@@ellochaos Forgot to mention for brain fog I take vitamin B 12 , doesn't always work . Also iron and magnesium, magnesium works the best for it as well as it helps anxiety.

I’m sorry to hear that. Better days are on their way! 💜

Sending ❤️