[Moreta]

I posted this story on my FB page last night If Someone With Chronic Illness Says They're Tired, Please Think Before Responding, 'Me Too' and people kinda piss me off. I got advice from taking a 15 min walk to being checked for sleep apnea. 1. I am too tired to walk. I am so tired my whole body hurts. 2. I have sleep apnea. CPAP doesn't help with the tiredness.

Being tired is just my way of life. I doubt it'll change. I down provigil and caffeine, sometimes throw in some adderall if I can get my hands on it. If there was something magical I could do to get rid of this fatigue, I'd be all over it. It's not fun feeling like a wet noodle.

It's so frustrating. Like wtf happened? I used to have energy eons ago. Now I'm just a fat lump that doesn't want to do anything. I've tried changing my diet, that didn't help. Now I'm stuck taking naps in the afternoon. I HATE SLEEPING DURING THE DAY. I sleep 9-12 hrs at night. It doesn't matter how much I sleep, I'm still tired. 33 yr olds don't go to bed at 8 or earlier. I feel like I'm ****ing 70.

I just want to be able to do things again. To have a life again. Is that so much to ask?

BTW this has been going on for years. It's just gotten worse the past month. I know there's something wrong with me but I can't get drs to listen.

[SorryShaped]

Aging sucks. I think this is part of that. I'm sorry. How are your blood levels and are they being regularly checked for everything? Is there anything they haven't looked at?
I think people, including me, grasp at anything to try to help someone in pain, because we're afraid that what's wrong with us might not have a solution too.

[*Laurie*]

Hi Moreta, I feel the same way...very bad stamina, tired all of the time. It's been like this most of my life. I have learned to stay alone a lot and do creative thing while listening to music that I love. I have to sleep for at least 10 hours or I cannot function.

[Moreta]

Originally Posted by SorryShaped

Aging sucks. I think this is part of that. I'm sorry. How are your blood levels and are they being regularly checked for everything? Is there anything they haven't looked at?
I think people, including me, grasp at anything to try to help someone in pain, because we're afraid that what's wrong with us might not have a solution too.

Blood work is fine except WBC was high when they checked and sedimentation rate was high, but I never got an explanation. Liver test is going down and is almost within normal range now. I haven't had a thyroid test done. I can't figure out what to tell the drs to get them to take me seriously. I wish they'd seriously figure this **** out though. I have a physical in April, but that's a long time to wait. Maybe I should email my GP. idk if that would even be worth it, it takes a month to get into see her and her PA is useless. I miss the old PAs at the office. They were nice and actually cared. My pdoc gave me a thing to get blood work done and I was gonna wait till right before the next appt, but maybe I should do them now. I just don't have the money. I've spent about $600 on health stuff since jan 1st between meds, drs appts, ER visit, and tests. It's insane.

[SorryShaped]

I have a lot of mental/medical bills I'm slowly paying on myself. Way more than you. They really haven't checked thyroid? That's first day stuff when somebody says they're tired all the time.

[Moreta]

Originally Posted by *Laurie*

Hi Moreta, I feel the same way...very bad stamina, tired all of the time. It's been like this most of my life. I have learned to stay alone a lot and do creative thing while listening to music that I love. I have to sleep for at least 10 hours or I cannot function.

I used to not be this way. I want my college body back where I could take 18 credit hrs a semester and work 40 hrs a week. Since I hit 30 it has been a general decline. I want to go hang out with my friends and go to fun activities but like 1 PM hits and I gotta pass out. Then it takes me so long to become functional in the morning that I have like a 2 hr window to do things. Doing more than 1-2 tasks a day just frazzles me, so nothing gets done.

[Nola0250]

Originally Posted by Moreta

I used to not be this way. I want my college body back where I could take 18 credit hrs a semester and work 40 hrs a week. Since I hit 30 it has been a general decline. I want to go hang out with my friends and go to fun activities but like 1 PM hits and I gotta pass out. Then it takes me so long to become functional in the morning that I have like a 2 hr window to do things. Doing more than 1-2 tasks a day just frazzles me, so nothing gets done.

When I feel like this, it’s a physical manifestation of depression. I don’t feel sad,
Worthless, etc. I feel it in my body. Took me 2yrs of medical work ups to figure this out. Just a thought.

[GoldenSnitch]

I feel like this often too and I’m only 30. It’s very upsetting when I feel like I don’t have the energy to do anything other than exist. I think for me it’s a combination of factors and doing things like diet changes haven’t helped. I hope that you can find a way to feel better. Hugs.

[tecomsin]

I used to be a funct oning adult and had functional energy levels. Ever since my diagnosis I have intermittently struggled with energy. Now, after chemotherapy I wonder if I'll ever get to a normal activity level. I live alone so I have to take care of myself and my cat. This is the only thing that keeps me going. I am just surviving and I don't see a way out. Sometimes I try to tell myself that I can overcome this obstacle, just add more activities slowly and I'll be back but every day I try and every day is a struggle all the same.

I'm 54 and feel like 80.

[Moreta]

If i hear one more person tell me to exercise to get energy I'm gonna scream. I can barely get the energy to go get wood from the wood pile. I just sit here wrapped up in blankets freezing a lot. How tf am I supposed to exercise. I could go to bed rn but i need to shower and eat and don't feel like doing either. I've had 400 mg of provigil, 30 mg of adderall, and a caffeine pill today and 2 teas with caffeine. I feel like I've been beat up. I'm sick of hearing people say "it's too early to go to bed" do you really think I ****ing care? I feel like I've smoked way too much weed and haven't touched any since last wednesday? Maybe one day I'll wake up.

[Wander]

Since my mid 20’s my physical health declined to the point where I was almost bedridden. Saw a Rheumatologist and he diagnosed me with Fibromyalgia and Chronic Fatigue. Those illnesses are common co-occurring with mental illness. Now I am a bit better but cannot do much exercise or I will crash afterwards. There are few, if any, treatments that work. I despair too that I have lost my physical health. I am 41 now. Maybe try to get into a Rheumatologist once you have the money. With mine helping me me I have gone from bedridden to mostly functional most days unless I have a big flare up. Good luck.

[~Christina]

My Stepsons Health has really suffered and is constantly run down and always exhausted.

He has gone through loads of testing and nothing really shows up , pretty much normal blood testing.

He works as a flight attendant and his sleep is wonky of course but he got really sick in Mexico a couple months ago and went to a doctor that his pilot had gone too before.

The Doctor told him that him vaping was the problem, he said there are so many different chemicals even between companies to make them.

He didn’t listen, he was mentally and physically dependent on it , he just brushed the advice aside.

Weeks later he left his vapping in England somewhere and wound up going a few days without it and he started feeling better. He has been off the stuff for a month now and its a big enough change for him to never go back to it.

I’m not saying this is your problem or maybe part of it .... but it’s something to at least consider.

I have Fibro, chronic fatigue and psoriatic arthritis so I hear ya when you say it’s terrible to feel so old so young.

I really hope you get some answers somewhere !!

Hugs !

[tsrc78]

Elevated sed rates indicate there is some inflammation issue going on in your body, which is common with autoimmune illnesses. But because it’s a nonspecific test, doesn’t indicate any type of illness, doctors don’t know what to do with it. I’ve been suffering with “flares” of something for many years, that appear to be autoimmune in nature, and cause me great fatigue and joint pain, but since I don’t have classic symptoms along with obvious abnormal blood work, no one can tell me exactly what is going on.

I’ve been on that Merry-go-round for about 15 years. I always get elevated sed rates and now CRPs when I am in a “flare”, that are normal when I’m not. I get joint flare ups from too much sun exposure, get pleurisy, but negative ANA, so I don’t have lupus. I have occasionally had elevated RFs in the past, along with joint pain and swelling worst in my fingers and ankles. But sometimes it’s negative, and my bones aren’t disformed, so it’s not rheumatoid arthritis. The one positive blood work I have is the presence of the HLA-B27 antigen, which indicates some type of immune system dysfunction. But I don’t fit enough of the classic characteristics of the autoimmune diseases associated with HLA-B27, just general autoimmune symptoms and a classic symptom (SI joint pain) of one, but nothing on an X-Ray, so no diagnosis! It is very frustrating. But the one thing that is ALWAYS present in my flare ups is the fatigue. I don’t know if you have any other symptoms of any possible autoimmune conditions (and there are tons of them) but it may be worth looking into.

When I have to deal with people while I’m in a flare of a likely undiagnosed autoimmune problem, I try to explain the difference between being “tired” and “fatigued”. Fatigue happens when you are dealing with a chronic illness, tired happens when you stayed up too late one night. When you are tired, a few hours of extra sleep or a long nap cures all. When you are fatigued, you can sleep for 12 hours and never feel rested. Fatigued is when your body is so worn down you can barely move. Your muscles, your bones, feel like they need to lift 100 lb weights in order for you to move. If you are tired, you can sleep, while if you are fatigued, sometimes your body won’t even let you sleep! Basically, piss off if you are tired from staying up too late at that friend’s party!

It sucks, it really sucks, even more so when you don’t know what’s going on. I feel like that when I’m in a flare, but I also have a mix of tired/fatigued sometimes due to my chronic anemia that doesn’t even significantly improve after iron infusions. My doctors don’t understand how I even walk around with a hemoglobin in the 7’s range most of the time - the reality is, I don’t walk around much, because it wears me out, lol. I hope you are able to get some answers.

[Moreta]

Christina, I don't think it's the vaping. I was tired before I started vaping. I've been tired for years. I've been slowly lowering meds hoping that would help. Sometimes I'm ok, other times I'm tired asf. Now it just feels worse.

tsrc - the neuro just said it was arthritis causing the high sed rate and decided nothing else needed to be done. It worries me cause lupus runs on my dad's side of the family and nobody seems to want to listen to me about that. I'm not quite sure what dr I need to see to get things addressed and at this point I almost don't care. My CRP levels have been high for years. I think it was first tested when I saw a holistic dr in 2013? or was it 2014? I can't remember. I wish I could see him again. He'd probably figure **** out. Too bad he didn't have a sliding scale. I can't afford $200+ to see him though. The lab there is separate and I think they bill insurance separately so I think insurance would pay for the lab work. The best I felt in years was when I was seeing him. I guess I can try my GP again, but it takes a month to get into see her. I can see the PA but I feel like she doesn't listen to me or know wtf to do about anything. I have a physical in April, so I guess I'll have to wait till then. I'll see what the GI dr has to say first. I had an ultrasound on my liver and gallbladder today and they'll get the results this afternoon, so they'll probably call me tomorrow and I'll try to figure out what to do from there.

This "magical coffee" that's supposed to give you all this energy and everything isn't working. bahahaha. I feel like taking a nap. I drank it about 30 mins ago and still feel tired asf. I feel more focused though like I don't have ADHD at all, but my body still feels so heavy. Maybe I need a double dose. lmao. Oh well. I tried.

[bizi]

I am bumping this up as I want to read this later, thanks bizi

[Wild Coyote]

I am sorry you go through this. I can relate. CFS/CFIDS, Fibromyalgia, Psoriatic Arthritis, migraines and Myotonic Dystrophy, Thyroid, etc.

I have been taking Adderall to try to function during the day. Temazepam at night.

I want to sleep/rest 24/7.

I hope you find answers.


WC

[bizi]

I wonder about fibro for me. I asked my doc about it and she ordered xrays of my hips, knees and neck which showed some signs of arthritis. But I get up in the morning so achey and stiff even my feet hurt until I get moving. My middle back aches. This new bed doesn't help. I even went to hot springs to soak in the baths to see if that would help, NOPE!
Do you take lyrica?
what labs should I ask for?
How is fibro dx?
bizi
I have Raynaulds.