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Chills no fever

Once again, my GP doesn’t know what’s wrong with me and my extensive Google searches haven’t come up with anything either. For the past year, I’ve been randomly getting chills but most often they happen when I’m about to go to bed or sit down. It doesn’t seem to matter how warm the room is or the bedding, it still hits. It even happened in summer which was a hot one. So I layer up and eventually fall asleep only to wake up sweating once my body has normalised. My doctor has done all the usual tests and literally given up. While I hope nobody else is going through this because it is so uncomfortable that it’s almost painful, I am really hoping for some answers. Please help me if you can. #chills #Undiagnosed #Fibro #Fibromyalgia #JHS #HEDS #help #question

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📺 Chronic Illness on TV Vs Chronic Illness Reality 📺

When you live with a chronic illness, especially when it’s something like FND, then your medical experiences are never like the ones you see on TV! On TV there’s always a magical cure for everything, regardless of what it is, whereas in reality, if the doctors can’t see it, or understand it, then they basically just don’t believe it. If they don’t have a “quick fix”, or even just a “fix” at all, then they simply don’t want to know, they treat you as if “it’s all in your head”, and they dismiss your concerns as if they’re nothing. All of which ends up causing us even more problems in the forms of Depression and Anxiety, as well as reduced self-confidence and self-belief. 🤷🏻‍♀️🙄🥺💔
#InvisibleIllness #InvisibleDisablity #FunctionalNeurologicalDisorder #ChronicIllness #ChronicPain #chronichealth #ChronicDepression #Depression #Anxiety #MentalHealth #NotOnTV #Disability #MightyTogether #Asthma #JointHypermobilitySyndrome #JHS #ChronicMigraines #Migraines #Headache #ChronicHeadaches #ChronicFatigue #Insomnia

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🏁 ‘Slow’ is better than ‘No’! 🏁

When you’re living with chronic health issues, regardless of whether they are physical, mental, or both, have you noticed how much pressure that you put on yourself to make as much progress as you possibly can? Like more progress will somehow ‘fix’ everything and make everything better? Like the more progress you make demonstrates how much you want to get better? Like if you’re not making enough progress then you’re somehow not making enough effort to get better or that it means that you’re somehow failing in your journey? It’s something that I have started recognising in myself, and I have started to realised that the more I push myself to make as much progress as possible, the worse I actually end up making things. And I’m sure that I am not the only person who does this to themselves. How many times have you pushed yourself so hard to make as much progress as possible but all you actually end up doing is causing yourself more stress, more pain, and more setback than progress? It’s so easy to loss track of the small victories, and we don’t realise that making SLOW progress is actually better than making NO progress at all, or, even worse, setting yourself further back than you already were. I know it’s not easy, in fact I don’t think that I have come anywhere close to achieving this revolution but it’s time that we start going a bit easier on ourselves and realising that it’s important that we recognise that the ‘small’ wins, the littlest progress, IS enough, and sometimes even more than enough!
#MightyMinute #52SmallThings #CheerMeOn #CheerEachOtherOn #MightyTogether #MentalHealth #ChronicDepression #Depression #Anxiety #Disability #FunctionalNeurologicalDisorder #FND #JointHypermobilitySyndrome #JHS #ChronicIllness #ChronicPain #Grief #ChronicFatigue #SpoonieProblems #Treatyourself #EnjoyTheLittleThings #CelebrateTheSmallWins #PersonalRevelations #MiniVictories

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💝🥰 I saw this and thought of you! 💝🥰

I saw this picture and it instantly made me think of my fellow Mighties! It doesn’t seem to matter what I’m going through, or how I’m feeling, I know that you are always here for me whenever I need you. 💝😍 Your kindness, compassion, support, and understanding, during my times of need have not gone unnoticed, nor will they be forgotten. You have been there for me much more than the majority of my family and friends have been, and that means far more than words can say. 🥰 When I got FND – which I still feel is short for “Friends/Family Now Disappear” – all my friends disappeared and I felt so lost and alone. Then I found the amazing people on The Mighty and discovered that I am not nearly as alone in my struggles as I used to feel. Thank you to each and every one of you wonderful people! 😘💝
#FunctionalNeurologicalDisorder #FND #FNDAwareness #52SmallThings #MightyMinute #CheerMeOn #MightyTogether #MentalHealth #Anxiety #Depression #ChronicDepression #Disability #JointHypermobilitySyndrome #JHS #ChronicIllness #ChronicPain #Grief #ChronicFatigue


Braces, Wraps, and Physical Supports - Any Recommendations?

Recently on the recommendation of a friend I got a pair of Mueller thumb stabilizers to wear while driving so that the wheel doesn't torque my thumbs out of their sockets due to my joint hypermobility syndrome. They have made a world of difference!

Now I am thinking a lot about other means of achieving a sense of physical stability using external aids. I realized today that I have been unconsciously using things like shapewear to help mitigate the constant feeling that my body is coming apart at the seams, and back when I was still dressing up to go out I often wore corsets because they made my back feel supported. (My grandmother wore a back brace for all the years I knew her, which makes me wonder if I inherited this condition from her.)

I'm wondering if anyone else is using things like shapewear, compression wear, weighted blankets, wraps, splints, stabilizers, braces, or other physical items on a daily basis to get that feeling of stability and holding your body together, and if so, what do you recommend? #Hypermobility #JHS #joints #Support #stability

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🤔 Why can’t they just agree?! 🤷🏻‍♀️

I’m pretty sure that anyone living with chronic pain/health issues will have heard the phrase “You need to listen to your body.” I know that I’ve heard it more times than I can count, and I suspect that I’m not the only one who has lost count of how many times they’ve heard it over the years. In theory, it sounds simple enough - do what your body tells you to do, when your body tells you to do it - but, in reality, it’s no where near as easy as it seems because trying to get your brain to agree with your body can be quite the challenge. It’s like your brain says “Let’s do this…” or “Let’s do that”, while your body says “There’s no way I’m doing that! I’m way too sore/exhausted to be doing anything.” It’s like trying to referee a debate that only you can hear. Wouldn’t it be great if the two could just get along with each other every once in a while? 🤷🏻‍♀️🤔🤗😂
#ChronicPain #chronichealth #FunctionalNeurologicalDisorder #FND #JointHypermobilitySyndrome #JHS #Disability #MightyMinute #52SmallThings #MightyTogether #MakeMeLaugh #SpoonieProblems #SpoonTheory #LetsLaughTogether #ShareTheLaughter

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I feel so lost… 😔

It’s been a while since I posted anything, not because I haven’t missed you all (because I have), but because I have had so many thoughts racing around my mind that I didn’t know where to begin. I feel like I’m lost in the midst of all the stress and chaos that is swirling around in my head. I’m actually so stressed that I have developed ‘Telegon Effevium’ - stress related alopecia - which is, ironically, also stressing me out. 🤦🏻‍♀️💔 I feel like I have so much going on in my head that I have lost the person I used to be, and I really don’t like the person that it’s turning me into. I want to re-discover the ‘me’ that I like being, the ‘me’ that I used to be before my life was turned upside down (which I will post more about later). The problem is, I just don’t know where to begin… 😔🥺💔
#CheckInWithMe #CheerMeOn #MightyTogether #MentalHealth #Anxiety #Depression #Disability #FunctionalNeurologicalDisorder #FND #ChronicIllness #ChronicPain #Grief #SpoonieProblems #TelegonEffevium #HairLoss #Alopecia #LostInTheChaos #JointHypermobilitySyndrome #JHS

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Sorry it’s been so long…

I haven’t been on here much recently and I have missed you all. I’ve had a lot going on recently (which I will go into in other posts) and, to be honest, I haven’t really been feeling like my usual self. 😔 I know that it’s been a while since my last post but, truth is, I’m not even sure that I know what I’ve been feeling, much less how to put it into words. I don’t know why I didn’t come here sooner, I mean, if anyone is going to understand what it’s like, then it’s my fellow Mighties. 💔❤️‍🩹
#CheckInWithMe #CheerMeOn #MightyTogether #MentalHealth #Anxiety #Depression #Disability #FunctionalNeurologicalDisorder #FND #JointHypermobilitySyndrome #JHS #ChronicIllness #ChronicPain #Grief #ChildLoss #ChronicFatigue #SpoonieProblems

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👋🏻 I’ve missed you all!! 👋🏻

Don’t know if you noticed or not, but I haven’t been on The Mighty for the last few weeks – it’s been a rough few weeks and I’ve really missed you all. 💝
I had a fall a few weeks ago and I really injured my hand and shoulder (thanks #FND and #JHS 🙄). Unfortunately, it was my right side that got injured – which isn’t exactly helpful for a right handed person – but I’m finally on the mend and back on The Mighty! 🥳 Not being able to use my right hand, and arm, really caused a few challenges, although, surprisingly, the biggest challenge wasn’t a physical one but actually a mental one – the longer the injuries took to heal, the more I noticed myself slipping into a low, depressive, place in my mind. I wanted to do things but physically couldn’t, and that seemed to heighten my feelings of anxiety and depression because I felt even more trapped inside a body that couldn’t do what I wanted it to do. Thanks to the amazing support and encouragement that you have all shown me over the last few months, I was slowly starting to feel a bit more like the person I was before I was struck by FND, and I was beginning to re-discover parts of me that I thought I’d lost forever… then, I had another ‘Drop Attack’. 😔 If I didn’t have JHS along with FND, then I probably wouldn’t have injured myself so easily – admittedly, that’s not necessarily true but that’s what I kept thinking. It felt like FND had already robbed me of so much, and then, just as things felt like they were improving (mentally, at least), it felt like my FND had “came back for seconds” and was going to rob me of even more of my mobility and independence. I’ll be honest, those thoughts scared me, and I was starting to feel those familiar thoughts and feelings of worthlessness creeping back into my mind. Part of me wanted to reach out to you all for support; the other part of me felt like nobody would be interested in helping me. Logically I KNEW that was NOT true, and that we Mighties stick together and support each other, but those feelings of worthlessness were so overwhelming that they made me forget that for a while. Why are the negative thoughts and feelings so much easier to believe than the positive?! I’m still struggling with those feelings of worthlessness but I’m so grateful to have finally returned to The Mighty because I really missed my fellow Mighties. 💕💝
#FunctionalNeurologicalDisorder #FND #JointHypermobilitySyndrome #JHS #Disability #MentalHealth #Depression #Anxiety #ChronicIllness #ChronicPain #MightyTogether #CheckInWithMe #CheerMeOn #DistractMe

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💅 Pretty Little Things 💅

I have always loved having pretty looking nails, it always makes me feel better. I used to bite my nails as a kid and my mum tried everything to get me to stop but nothing worked. Then she decided to paint my nails one day and they looked so pretty that it didn’t want to mess them up so I didn’t bite at my nails. Such a simple solution to what is a tricky habit to break. Since then I have always liked getting my nails done, but 4 years ago FND robbed my of the ability to go to a nail salon and have my nails painted and designed. So, since I don’t use nail extensions, I decided to take things into my own hands… literally, and started trying out different designs on my nails. It worked rather well because I had pretty nails again and it also gave me a way to still be creative and artistic too. It might take me a while to do my nails because of my health but I still get there in the end and that gives me a sense of accomplishment. These are some of my favourite creations that I’ve done and I’m sure I will have more along the way. It might seem like a small thing but it’s the little things that make the biggest difference. 💅😍🥳
#52SmallThings #MightyMinute #FunctionalNeurologicalDisorder
#FND #fndaware #FNDAwareness #FND2021 #fndhope #fndhopeuk #LetsTalkFND #fndwarrior #JointHypermobilitySyndrome #JHS #JHSAwareness #JHSWarrior #ChronicIllness #chronicillnesswarrior #ChronicPain #Chronicpainwarrior #Disability #MentalHealth #Depression #Anxiety #creativetherapy #NailArtTherapy #ItsTheLittleThings

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