Chronic Fatigue

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    Another Day Another Push

    I joined here to push myself and give myself a voice among people who might hear me.

    I am a writer whose voice was scrambled by a head injury and chronic illness… Everything in my life has been scrambled if we are honest😂…

    But, my writing is something I need to get a handle on because it’s the one thing I can still do one the days that I can’t move and can hardly breathe…. It’s the thing I feared the most in losing..

    So, we’re starting somewhere.🤷🏽‍♀️

    So, yesterday I had a list of things I wanted to get done, but I only completed one.

    I did my laundry… ✔️
    The cold and pain kept me from moving so that was my biggest accomplishment.

    Today, the goal is:

    ✔️folding and putting it all away.

    I want to do other things but that will be the biggest thing.

    So far I have:

    Eaten Breakfast ✅
    Taken all my meds ✅
    And I am about to take my breathing treatment..✅

    We shall see how the rest of the day goes…

    Wish me luck 🥰

    #Asthma #ChronicIllness #TBI #Jointpain #ChronicFatigue #AnkylosingSpondylitis #Depression #ADHD

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    We are the #TheMighty ! #Fibromyalgia #ChronicPain #ChronicFatigue #Insomnia

    No matter what we are struggling with, we are it together! You are loved! You are understood! You are not alone! You are strong! I say these things for myself, as well. I work full-time, even on days when I hurt and have not been able to sleep the night before (like today). But, I get up, I shower, I do my hair, I put my business clothes on, and the second I walk into the office I feel alone with my illness and pretend it is not there. I love our Mighty community and the love that is always here! Have an amazing day and remember you are not alone, and you are #Loved

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    My Invisible Illness

    I would like to open up about my invisible illness. I first realized there was something wrong about six years ago when i came to New Zealand in couple of months I got really sick had this persistent pain in my body and I kept getting this shooting pain from my neck to lower back. My pain became more widespread, more frequent, and more intense when I was at university.

    I went to several doctors and specialists had several exams for past 6 years finally I was diagnosed in 2022. The neurologist gave my invisible illness a name Fibromyalgia. I was finally relived they found what actually my illness is however it is a chronic illness which is lifelong and has no cure and also accompanied by chronic fatigue and 100 other symptoms.

    Living with fibromyalgia means living with a chronic pain condition that greatly influences daily life. I feel pain all of the time and this affects my ability to do day-to-day tasks.Every task I choose to do has a trade-off with another. For example, if I choose to cook something, doing the laundry becomes more difficult.

    As soon as i was diagnosed,I was forced to slow down all my activities both in personal and professional life it had gotten so worse that full right side of my body from neck to feet was in so much pain i could barely move, close my fist or hold a cup or grab the spoon to cook or eat.

    Hence i had to make so many changes in my life to gain back strength and mobility slowly back to my body.I had to start taking different medications and therapies with many trials until my doctor found what worked better for me, many meds I was on, messed with my sleeping pattern made me feel nauseous and dizzy whole day and others messed with my stomach lining. I tried to work out because I felt that staying active changing my diet to vegetarian would help me sadly it worsened my symptoms even more. The most challenging aspect of fibro, for me, would be the fatigue, since it prevents me from doing a lot.

    Unfortunately, there are not too many medical experts in New Zealand who have done research to understand what I have, and how it affects my daily life. My husband is my number one supporter and he helps me with my stress which is a trigger to pain, but there are also those who don’t understand or care to, so I just distanced myself from those people. I will continue to remove such people from my life, whether blood related or not, if you are not concerned about my wellbeing then I don’t need to have you in my already small circle.

    In the last six years there has never been a day my body was without pain. I dont even know how it feels to be without pain anymore. I can’t be on meds 24*7 so i try to get as much rest as possible. As the meds have other side effects which causes other health issues.Honestly, i have tried all the pain killers in the world none of those have ever made my pain go even 20% less . There are times when I feel like nothing works and then i started to research and study on this illness myself.

    With my findings and study for months i found out that lifestyle management is the only solution with people who have chromic illness. Since western medicine doesn’t have any cure i studied Ayurveda and gain knowledge around it and observed myself by doing trial and errors with Ayurvedic diet and practising spiritualism as a result to balance and manage my lifestyle Ayurvedic food diet which works for me in subsiding symptoms related to fatigue and stomach lining. Spirituality also really helped me such as meditation and yoga in order to focus on the positivity around me and to push myself to keep fighting with my body in order to live my life to the fullest.

    As far as being open about my illness & symptoms, I hate to complain, because I know it can be annoying to hear someone talk about how much pain they are in daily, so I keep it to a minimum. I hate to hear that it will get better, when I know it’s not going to get better because there is no cure. So, I had kept it to myself. Remember to be kind to people as behind that smile we don’t know who is fighting a battle not everyone likes to open up about their struggles. I have had people commenting on my life about gaining weight or not going out or visiting families and friend. Last six years has been a roller coaster ride for me. I have been faking being okay!

    My biggest battle is the pain I deal with daily, but the biggest is putting on a brave face, getting up and starting my day and trying to keep up with my daily responsibilities either personally or professionally. There was many moment in my life where i would want to scream at the top of my lungs. I just have no control over this illness that has taken over me and i would want to take my life. Then i look around and see I have family who i love dearly, and one look at them, tells me that my life is important and worth fighting for.

    Honestly taking it one day at a time, is how I balance my illness in my personal and professional life, there is no other way. I had always been a high achiever and proceeded to put a lot of pressure on myself in every aspect of my life hence people always say i am lucky whenever i attained my goals whether it was graduating with academic excellence being the top scholar or getting a corporate job at management level or buying a brand new home or travelling around and buying luxury items at early 20s it is not luck it is hard-work sacrifices and most importantly journey of fighting with my own body, health and mind to live life and achieve of my dreams. I just want to say to each one of you if your healthy you are lucky one as Health is Wealth!!

    I would like people to know and understand that this condition is real and it’s depressing- please be supportive. If you find that you can’t be of any help to that person suffering from Fibro, then remove yourself from their lives, and spare them further pain.

    My words of encouragement for others who are living with Fibro are to try to find a doctor who is caring and believes in your pain, and work with them in finding medication that can help you control some of the pain, because right now, there is nothing that take it all away. Continue fighting, and don’t give up, we have people who need us and depend on us, so we must find a way to fight to continue living. And lastly we should all come together and help us spread the word, and know that you are not alone.

    Lastly, this message was not for sympathy it was for awareness in the community which is must needed.
    #Fibromyalgia #ChronicPain #fibromyalgiawarrior #illness #Fibro #healthiswealth #Bekind #ChronicIllness #symptoms #treatment #RheumatoidArthritis #FibroFog #Medicine

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    The article below is full of great ideas on how to find a good new doctor…please add your own experiences, tips and suggestions

    Great article that talks about the importance of good bedside manner, doctors that listen, checking your insurance at the start of your search, asking good questions and do your homework of course! It has lots of good ideas especially at the end under “Finding a good fit”…like…

    “…During that first visit, think about how the doctor and office staff make you feel, HHS advises. If the doctor doesn’t make you feel comfortable, show respect for what you have to say, know your medical history, and spend enough time with you, then they might not be the one for you.”

    www.everydayhealth.com/healthy-living/new-survey-asks-what-d...

    #MentalHealth #Depression #Anxiety #Disability #PTSD #Selflove #Selfcare #ChronicIlless #ChronicPain #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #COVID19 #Migraine #Headache #PeripheralNeuropathy #Concussion #BrainFog #ParkinsonsDisease #balance #EssentialTremors #Memory #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #ADHD #RareDisease #ChronicFatigue #IfYouFeelHopeless #Hope #Faith #FuriouslyHappy #Belief #Love #help #GettingHelp #InsideTheMighty #TheMighty #MightyTogether #DistractMe

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    I Have Always Been A Storm

    Mash up of Stevie Nicks and James Norbury references today, as I’m currently caught up in a medical storm of sorts. I went to the doctor yesterday for a pressure test to confirm I have chilblains, which he confirmed, but not before giving me a long mansplanation about how in his opinion I’m actually mentally ill. My husband and I both felt whiplashed by this conversation, considering I went in to get my feet examined which fell by the wayside at lightning speed to become a grilling about how I should accept that I have Illness Anxiety which is causing me to be fatigued—not my #MyalgicEncephalomyelitis

    I’ve spoken with an ME charity who gave some advice, but they also said that though my doctor is medically obliged to abide by the World Health Organization’s categorisation of MECFS as a neurological disorder, this doesn’t stop some doctors from wrongfully categorising it as a mental illness.

    It is frustrating having to spend what energy I do have on trying to self advocate for treatment, then having to spend my nights reading up about the DSM criteria for Somatic, Illness Anxiety, and Conversion Disorders. I asked the doctor how I could prove that I’m not mentally ill and his answer was “with difficulty because (people like me) have a hard time accepting that they aren’t physically ill.”

    The greatest insult in this statement is that he dismissed all my private lab tests as being pseudoscience, but when I challenged him to produce scientific evidence to confirm his Illness Anxiety diagnosis, he basically used a Fallacy Argument to prop up his hot take.

    In my ordinary life, I would consider this farce, but as doctors are gatekeepers—I am being denied access to medical care based on someone’s whim. One which seems to have made it’s way into my medical history so that wherever I go within the NHS, this black cloud will inevitably follow.

    Like us #ChronicIllness sufferers don’t have enough to deal with already, but as Stevie sang “Never have I been a blue calm sea, I have always been a storm.”

    #MyCondition #ChronicFatigue #MightyTogether #MightyMusic #MightyBookClub

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    Flare Ups

    How do you cope with the horrible exhaustion and body pain from what I believe is autoimmune flare up? Need to be back to normal soon.. ☹️ #AutoimmuneDisease #ChronicFatigue #Pain #Headache #Depression #Anxiety #TheMighty

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    central sensitization syndrome

    Sometimes a new approach is needed and sometimes IT makes sense!

    youtu.be/vJNhdnSK3WQ

    m.youtube.com/watch

    We hope this helps someone out there we just learned about this while you tubing through #ME #CFS #Fibromyalgia #ChronicFatigue #ChronicPain

    #CroudSourceIT

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    Interstitial Cystitis Flare

    “For me I really like corn 🌽 😜” using frozen corn to ice my pelvic area. In a really bad flare right now with IC and IBS 😫 trying to decrease inflammation - fluctuating between ice and heating pad. Also, gonna try to take an epsom salt bath 🛀 later. I’m sooo frustrated because I thought my IC was getting better!!! My doctor believes the IC might of been to the parasites and tick-borne illness (babesia + bartonella), so I’m taking meds and supplements for that, but herxing has been rough! I also received a bladder instillation and pelvic PT. I’m at my wits end dealing with the chronic pain and intractable fatigue. Do any of y’all have any other tips for coping and managing pain that I didn’t mention? Also, I’m considering looking into acupuncture 🤔 Has anyone looked into acupuncture to treat their pain? #frozencorn #InterstitialCystitis #ChronicPain #IrritableBowelSyndromeIBS #ChronicFatigue

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    Official Diagnosis #FibromyalgiaDiagnosis #Fibromyalgia #ChronicFatigue

    Hello my Mighty Family! Saturday I got my official diagnosis…after 20 years! I am so grateful I found an amazing rheumatologist who sees patients on a Saturday, and who was willing to spend two hours with me…after looking over the lab results I took in with me, he came into the room and spent the first hour and a half asking me questions, actively listening to my responses, and then sharing that based on everything he was confident in my diagnosis and confident in his treatment plan. Even though I have always known fibromyalgia runs in my family and I have talked to Doctors about it, he was the first to finally acknowledge that, yes…I have a chronic illness, but with his help it will not be what defines me nor will it be the end of my career. Medication management, getting my pain under control with a nerve blocker and a prescribed NSAID (as Advil and Tylenol don’t help and I did not want any opioids) because he said my pain tolerance is way too high, and something to help my sleep. Started treatment and feeling a little better, minus the #FibroFog . Anyone have any suggestions for managing the fibrofog?

    28 reactions 16 comments