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frankie

New member
Joined
Feb 25, 2015
Messages
6
Reason
DX FIBRO
Diagnosis
12/2011
Country
CA
State
ON
Hi All, I'm new here. I've been diagnosed with fibromyalgia for a few years now. For the most part I am able to handle the pain with medication. What is really causing me problems is the fatigue. What does everyone do for that? I mean I can go to bed right after I get up in the morning. I could easily sleep a day away. I work full-time so naps aren't possible. Any suggestions? I would more than appreciate it.

Frankie:roll:
 
Dear Frankie, I wish I knew as well. I, too, can mostly manage pain but haven't found anything for the nagging fatigue. I've asked my doc to look into a narcolepsy drug, modafinil, but haven't heard anything. It's crazy expensive, so even if she thinks it's a good idea, I'll have to deal with insurance coverage. Otherwise, I am going to try adding some supplements to the mix: NADH, DHEA and acetyl l-carnitine. Unfortunately that's costly as well. Not sure I can afford anything at the moment. You can research them. The University of Maryland Medical Center has a page about Chronic Fatigue and lists some other supplements and herbs that you might try.

The bigger issue with the fatigue for me comes after I do something beyond walking or gentle yoga. We have had so much snow this winter and whenever I shovel snow, I am out of commission for 2-3 days with overwhelming fatigue. We had another six inches of snow today, but fortunately my nephew came down to shovel since I haven't recovered from Sunday's 16 inches.
 
welcome to our forum. fatigue is due to not getting the healing sleep. it takes 4 hours on sleep for the healing sleep to start. thats why we need 8 hours of straight sleep. once it gets very bad your body will beging to shut down and you will pass out like i have in the pass. if you wont get the everyday sleep then your body will take over and make you get it.

think of the reason why your not getting the healing sleep. deal with those issues first.
mine is mostly pain and drug related. im on to much gabby and the doctor tells me once that happens, it just comes out in your pee. so im waking up peeing every two hours. i thought i had a bladder problem so i had it checked first. all good on bladder. its the meds.

get on a set sleep schedule, eat right and nothing to drink after dinner time. works for me.
 
Cmetryme, unfortunately there are some of us who also have chronic fatigue that doesn't correlate with hope much sleep you get. I could sleep 10 hours and still be tired. I've had all the sleep studies possible and all is okay. Granted pain does interfere with good sleep at times, but not every night. I have great sleep hygiene...good bed, no electronics, regular schedule, no coffee late in the day (unless I'm working and have to stay alert), no eating close to bed time....on and on and on. This is a debilitating fatigue that should more properly called complete and utter exhaustion.

All of us need to get enough sleep, it is important to get the restorative sleep as many nights as possible to help with pain and tiredness/fatigue during the day. And you offer good advice. I keep hoping that someone has a remedy for the fatigue that robs my days and turns clearing my walkway of snow into three days of hell. And trust me, I do it in small pieces. Grrr. I think I need some hot weather!
 
Hi Frankie,

Welcome to the forums! Oh my gosh, yes, I can get up after sleeping a whole night and still want to sleep more. I try to get up and spend an hour or so with my husband before he leaves for work. Part of my fatigue is dealing with my chronic pain from FMS. It is amazing how much that can take out of you. I have learned to live, for the most part, with the pain and wow it takes tons of energy to do so. I know I toss and turn a lot even when I do sleep. I have woken up to find the sheets off the bed on my side lol. I also wake up a lot during the night. I get like little cat naps I think versus deep restorative sleep. I do know taking a super hot bath before bed helps me fall asleep. It has to do with getting sleepy because your body temp is dropping. Staying asleep is another thing ugh! You said you are on medication which also might be affecting how tired you are. I would ask your pharmacist about that. I use a sunlamp and that helps me gain some energy. I hope you find something that helps even if it is just to know you are not alone!
 
Yes, what Loftpat said. Even when we do everything right with regard to sleep hygiene, the fatigue is still there.
 
i agree with you loftpat. it affects everyone differently. for me i have unbelievable pain day and night. i dont often get the 10 hours sleep.
when i do its great. i didnt hear anyone say that it was making them shut down or pass out. so doing what loftpat said it helps.(not a cure) when i was passing out i was on Lyrica. for over two years i would get maybe 2-3 hours of sleep each night. in bed at 8pm and still awake at 2am. then up at 4-5am. it took a toll on my body. wife Dragged me to the doctors office to see why i was passing out(fatigue). since im now getting the healing sleep i dont pass out. Just last night for example. i was feeling great low pain level 2/3. lowest ive been in 47 days and nights(log book). at 9pm my lupus kicked in and my legs started hurting. crying and screaming pain level. i went to bed at 9pm and believe me i suffered. at 1am the pain went down to a 3. i got to sleep until 9am (wife woke me to say good by). im getting the healing sleep now, even with the pain. im told (doctor) over sleeping will cause the fatigue as well. i thought it was the lyrica but i had it(fatigue) long before the lyrica.(had eye site problems on Lyrica)

i pray you folks dont go thru what i do every night. i wish this on no one. and i want to see my wife and son, so i keep going. you should too.
overall take care of your body and it will take care of you. PS I know this is scary. sorry to do that to you.
 
Loftpat you said in your post. I've had all the sleep studies possible and all is okay.

Is there anything you learned from that you can pass on?
can we avoid things that will reduce the fatigue? maybe why it happens?, how long it lasts? is it not related to sleep at all? is it part of FM?

i think folks would benefit from the information.

thanks .
 
I really panicked thinking I lost this support group which h just goes to show how needed you guys are to me.
I'm having trouble with exhaustion, vision problems, extreme sensitivity to noise and light. All those symptoms disappeared for a week and I thought "ok "I'm in remission and could stay that way for a while, what a fantasy that was.

What's making me so so nervous right now is my memory and exhaustion.
I'm not talking again to my husband cause he could care less, he wants wonder woman back. We're most likely on their verge of divorce, or cohabiting. I'm dreaming of a home of my own that I could move into. ALONE!.

I'm so sad, my life and family are falling apart, my faith wonders, which has Never happened in their past. At times I wonder if I'm seriously mental handicapped.
What's that symptom kids show with pro less to thrive due to severe sensitivity to noise?
Man I could use some encouragement. I'm done with talking to my family. I feel insulted when they say stupid #@## like oh just exersize, all I hear is get off your fat ass. Which dear Family btw ��doesn't work!
 
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I understand moe. Big hugs. Family is the hard on us. They think they can say anything they want and not hurt you. Sounds like you need a break from all of them. They are causing you stress. We all want to be Wonder woman or super man again. If we could we would. Get the clothes pin out and use it on them. You know you have a caring family right here. Until your family understands your pain your just banging your head on a brick wall. That would drive anyone crazy. Do only what you can. Be happy you can do it. If you really feel your husband could care less then tell him that. Get things off your chest and come to terms with your husband. Remind him it's for better or worse. As I've been through 2 divorces I know its hard to imagine life without the one you love. Love being the key word. Ask if he loves you. If he says yes then tell him to show it. Point out what makes you feel hurt. He's a man and doesn't know he's hurting you.
Time will tell you everything you need to know after your talk. Make sure you tell him comments like get of your fat azz don't help and it hurts.

Remember what if been saying. Make informed decisions.

You can do this. Your very strong and your making it through each day that most can't imagine.
Big hugs and please vent here.
 
Huge hugs Moe! My first husband was the same way. It was like he thought I was faking it or something. We wound up getting divorced. It was so nice to not have someone around who I was allowing to make me feel crappier than I did. My current husband tries to understand but there are days I have to remind him "I feel like crap today." I refuse to put up with anyone who tries to make me feel less than I do. I also know I am responsible for my own happiness. It also helped me to take my current husband to the doctor who could explain to him that this was not a matter of being "lazy". When my husband got the flu, I said, "This is how I feel almost every day". He finally got it! So, even men can learn (hehe cemetryme). My family, in general, does not get how sick I am but atleast my husband does now. He even thanks me for the little things I do like the dishes. I make sure to thank him for all he does too every day. As I am typing this, I am remembering how long it has been since the livingroom carpet was vacuumed lol. I can't do it but I am not upset he hasn't because he works a lot of hours at his job 6 days a week. Do what makes you feel right as far as your relationship goes. I have learned to follow my gut, literally, on those matters. Many hugs!
 
I said he doesn't know. Not can't learn..lol monkey's can learn! Lol .
 
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