hello I am brand new to this alike app I'm also just about to head off to work for the day yes I still have my job barely and it is part-time it is a struggle. I have chronic fatigue syndrome diagnosed by rheumatologist a couple of years ago after Epstein-Barr became post viral syndrome and it never went away. and it's a frustrating illness to have because you don't really know if that's what you have or if there's something else they're just missing and wants to get that label they stop looking. they found that I had iron deficiency and a genetic disorder in my mitochondria fixing all the little holes along the way that they did made me get about 20 to 30% better there was a point where I felt like I was 60 to 50% myself again and then it just got worse and worse again. I'm down now to the point where I can barely keep myself clean let alone my house my Daily Yoga practice is done my exercise with regular plus being an active individual and working and now I can't even do the Daily Yoga anymore I barely move outside of my work because I am a janitor so I move a lot on the job and I can't do it if I don't not do anything else. I have this and a few of other medical conditions a few that they couldn't find because they don't have them in their system yet. but I find this one to be the worst thing in the world to live with it is touched every area of my life and shrunk it. It's invisible so people expect you to act like he used to and you simply are unable to and people think you're lazy and people don't believe in it doctors don't even believe in it. and once you get the label people stop searching so you feel trapped I do anyway. I just thought I would introduce myself before I head off to work any responses I will happily chat with anyone it's a really lonely position to be in with this disorder October will be 3 years living like this I don't know how I could go on another few weeks let alone thinking of yours and yours more. how about you? How long have you been living with your condition what doctor diagnose you? How severe are your symptoms are you still able to work? Care for yourself independently? Do you think it is the right diagnosis or do you want them to keep working to find an answer? have you gotten doctors and many other people who have been dismissive of you since the diagnosis of c f s? what do you do to try to help yourself live with this condition? anyting you would tell me or you want to share however small or large would make me feel so much less alone. thank you for anyone who responds I may not be able to respond immediately because I said I'm heading off to my job right now. nice to meet you.
Chronic Nausea and Vomiting
Myalgic encephalomyelitis/ Chronic fatigue syndrome (ME/CFS)
Thank you for the app suggestions and thank you for the reply. I have a formal diagnosis and everyone around me finds it hard to believe. My boyfriend of 10 years as supportive as he can be but he often like forgets and he hasn't looked up the condition himself to understand it and I don't know if I'm convinced I want them to keep looking for something underneath something that is causing the symptoms of chronic fatigue rather than me just stand around and get sicker I've tried to eat better I was already eating pretty well my ability to care for myself as a steadily declined over the last two and a half years I used to exercise everyday we're trying a couple times a week yoga everyday and walk a couple miles before work plus I got 10,000 steps at my full-time job now it has down to I can't even do yoga in the morning and I can barely keep my part time job I can barely take care of myself. I take all the supplements I eat as clean as I can listen to affirmations about health xcetera but I'm steady decline and no one wants to listen. Congratulations on getting your health steadily bumping forward. I pray for a day like that I hope it doesn't take me 25 years lol that's agonizing I think about.
I totally get you! And congratulations on being able to maintain such a physically demanding job with this condition! I've found people and doctors to have a hard time believing it's real. It took me shopping around for a Dr to find one who actually paid attention to me. My husband even still has a hard time with it this many years later but he tries to be supportive. It's impossible to describe so people who haven't experienced it or any other chronic condition literally have no way to comprehend. The things that help me a lot are acupuncture, chiropractor, being dairy free and gluten free and mostly sugar free. As you already know, not all Drs are created equal. If you don't feel better or seen in some way after your first visit, my rule of thumb is that's not the right Dr for me so keep looking into you find the right one! It's exhausting but worth when you find the right one for you. One time a good Dr said me after I was hesitant to go into my whole history bc I tend to not be believed, "The thing about pain is that you can't measure it. So when someone tells you that they're in pain, you believe them."
I also self diagnosed then brought it to my doctor who said it’s probably what I have. I work part time from home but going back into the office soon and sitting on my bed working feeling sick and wondering how I’m going to make it when I’m back in the office. I had a job where I was walking and moving around a lot and once I stopped I got heaps better. If there’s anyway at all to get a different job that’s not so much walking in my opinion only I think you will feel a lot better. I used to get bad headaches with nausea that virtually went away after I stopped my one job. I also ended up in the ER a couple times but not since. Still not great but a bit better. I know I’m going to get worse when I go back into the office but I need $. 😥
✋ hello everyone I'm still learning how to loot use the app I just figure it out pressing the mail button allows me to see the question that I put out and all of your answers I will be reading them as soon as I get a chance the weekend is the only time I get to spend with my partner of 10 years. And you all know what the f s energy if very sparing I have to use my spoons for him but now that I know how to do this I will read all of your responses and reply very soon it's nice to be able to talk to somebody a few somebody's that actually comprehend what I'm experiencing. Look forward to responding to you soon
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