Chronic Fatigue

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Chronic Fatigue
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Community Voices

Scared and not ok.

I'm struggling with an unknown illness atm. Went from. Slightly tired with a standard 7 hour sleep time with an occasional nap on weekends to sleeping an additional 3-8 hours with 2 naps one in the morning one in the afternoon. If I don't nap I get all brain foggy and will go to sleep like a toddler even while eating or talking. I am going through all the tests, ent, neurologist, sleep center all say I'm sleeping fine apnea under control. I know I'm sleeping fine just way to much. Going to the big hospital to see their internest. Antibiotocs did nothing,still in process of checking heart. I do have fibromyalgia, and have had Lyme. Is this recurring Lyme, is this CFS? I'm stressed by home life but in no way depressed. Happy, enjoy things when I'm awake to do them. I'm ok if I have a plan but this came again sudden onset about 4.5 months ago. Searching for answers. Grateful I have a medical team who believes me. #ChronicLymeDisease #Fibromyalgia #ChronicFatigue

3 people are talking about this
Community Voices
Community Voices

Tortoise Thoughts

<p>Tortoise Thoughts</p>
6 people are talking about this
Community Voices

New Scary Symptoms

Hi everyone. I’ve been struggling with many things for a few years, especially the past two since my Dad passed away. I didn’t have any support then and I turned to eating every night to tune out the pain. I feel like I need OA which I’ve been looking into, but I’m wondering what else I can do to feel better. Now that I’ve been doing this like every day for two years, my body feels very sick and after I eat too much my heart pounds like crazy. It feels scary because I dont know what the overeating may have done to my heart and the rest of my body, and I want to find out but my regular doctor can’t see me until next month, and my gi doctor cant see me til the 27th. I feel like I’m out here floundering around alone, not really knowing that to do or who to go to, and it feels really scary.

This may be tmi, but part of my problem is that the eating is on top of severe, chronic constipation, and I’ve read that overeating can actually cause constipation, so I’ve been in a very painful endless loop of these two things for a long time. I feel so helpless and so sick and I have no idea how to better. (Aside from OA which I think will help alot)

Has anyone ever gone through something like this and how did you cope and get better?

#Overeating #heart #gastroproblems #ADD #Bipolar2 #ChronicPain #ChronicFatigue

18 people are talking about this
Community Voices

Some days I cam get through and it feels like I almost understand/can live w my chronic illness. Then a low day hits and I'm overly exhausted, in intense pain for the 4th time in 1 week and I feel like this is going to be my life forever. 12 different medications that only work a little but have tons of side effects. Sleeping 12 hours every night else. Still so fatigued and foggy when I wake that I can barely function. Low days. Hard days to stay hopeful so I try to stay asleep &/or dostracted instead.

8 people are talking about this
Community Voices

2 Steps Forward 6 Steps Backwards

Do you ever feel like every time you make any progress with your illness/disease you win a little then it knock you so much father back that you will never get back to were you were before?

So I have FND which means my nerves and brain function abdominally and communicate about as well as toddlers playing the telephone game. Add in a sprinkle of Tourettes Syndrome and Sensory Processeing Disorder, Migraine, Dyskinesia, Dystonia, and we are currently exploring epilepsy. All this results in me being confined to a wheelchair at least 85% of the time and need to be supervised if I am not. Along with eating difficulties, communication problems ect...

I have to go in for occupational therapy and physical therapy once a year to help me maintain quality of life. Sometimes we add speech or cognitive to spice things up if I need it . All these therapies are great and can act as kinda a filter on how to adapt my life to limitations and give some good ideas on how to make life easier within my limitations my body has placed on me. However it always feels like we make a little progress with them and once I "graduate" out of them (stop making progress usually after a the first 2 months) my body starts to decline again even though I countue to do my home programs (hey I want as much quality of life as I can get I mean I turn 20 in the fall I will take what I can get). This happens with me staring to fall more, my hands start to get weaker, I drop more weight, ect.

2 steps forward 6 steps back.

Every time. It seems like I am on this never ending loop of yes some progress. Whap out of no where I get worse ...

2 steps forward 6 steps back.

It's like this dance me and my body play. Oh you gonna work to try and get better. Sike now your worse enjoy the new wheels.

2 steps forward 6 steps back.

Around and around we continue this dance and we can't seem to figure out why this downward spiral keeps happening. Like I'm not gonna keep fighting for my quality of life but man would I like to stop this dance or at least hit pause for a bit.

2 steps forward 6 steps back

It's exhausting. I just moved and my new pcp asked if I had made any progress on getting better and it hit me that no actually I keep getting worse and my symptoms keep getting more debilitating as time goes on. So now we redo all the testing and redo all the things to see if anything has changed...

2 steps forward 6 steps back.

Anyway I'm just excused with everything. I'm still gonna try and still gonna give it everything I got which honestly isn't much at this point. Still gonna give it a go. Got to continue this dance in homes that some day it will be 6 steps forward and 2 steps back instead.

#FunctionalNeurologicalDisorder #ChronicFatigue #ocupationaltherapy #PhysicalTherapy #notmakingprogess

1 person is talking about this
Community Voices

These are recent valuable words from one of our group members -to help inspire every group member to write your own posts within Our Member-Led group

“Share your worst pain openly. I am unable to judge you negatively, because I understand.
Let out some of your pain, be heard, and be understood.”

“More valuable is that we can share our pain with people we know really understand it. This is a way to release some of our pain, and to not feel so alone…..We have done things to make this happen. Maybe we have something more than empathy to share.”
#Depression #Anxiety #MightyTogether #Stories2Connect #WritingThroughIt #Pain #PTSD #Trauma #HowToFightDepression #NoOneFightsAlone #Support #SupportGroups #ChronicIllness #Disability #MyCondition #ChronicPain #ChronicFatigue #LifelimitingIllness #ChasingLife #Life #Friends #Friendship #ChronicDepression #MajorDepression #MajorDepressiveDisorder

47 people are talking about this
Community Voices


12 people are talking about this
Community Voices

Updated test results and venting again

So my blood tests were all normal and my ANA came back negative. My primary dr says he thinks it's probably fibromyalgia after all because we've pretty much ruled out everything at this point. No guidance beyond that because I have to wait for my genetic test to come back to find out what anti depressant I can take as all the ones we've tried have made me suicidal or had negative sexual side effects. To say I am frustrated is an understatement. I'm only working 2 days a week and it's still too much for me. I want to quit but I also can't stand the idea of not having my own income in some way if only my husband works. My doctor told me not to do more than I am or it'll get worse but didn't say anything more than that about my job. I still couldn't get in with the Rheumatologist any earlier than mid September since the ANA was negative. On a good note, my doctor reassured me that they do believe me and he knows I'm in a lot of pain but explained that there's only so much he can do within the scope of family medicine until I can see the Rheumatologist since we are stumped on the diagnosis. All we really know is it's not neurological (like MS) and it's not thyroid or autoimmune. At least it's one test closer to a diagnosis I guess. #ChronicFatigue #ChronicPain #CPTSD #Anxiety #Depression

3 people are talking about this
Community Voices

How honest are you about your health at work?

<p>How honest are you about your health at work?</p>
8 people are talking about this