Does Any One Here Experience Bone Crushing Fatigue?

[maryla]

Hello All, :help:

Does any one experience bone crushing fatigue here with IC and all the other related illnesses?

I'm talking WAY BEYOND EXHAUSTION?

I am scheduled for an MRI soon to check for MS. I was just wondering if any of you experience this?

I don't know how much longer I can take this!!!!! I'm SO tired of feeling sick and tired!!! :cussing: :cussing: :cussing:

:help: :help: :help:

Bless you all,

[SandyRN]

Yes! I was dx'd with Chronic Fatigue Syndrome several years ago when they dx'd my fibro and myofascial pain syndrome. It IS WAY beyond being tired! I hope you get an answer soon!

Hugs, Sandy

[maryla]

I know what you mean.......I have Fibro and Myo and CFS too For about a year and a half, But starting last fall.......I have never felt SOOOOOOOOO exhausted in all my life. I shared in another thread that a while back, I had a tumor removed in my lymph node and was praying for cancer. At least, I though, that was something fixable........It wasn't.........I know you understand........it's horrible!

Thank you for listening Sandy.

Oh one more thing, a couple weeks ago, I went to my yearly gyn and she ask me if I felt ok? I said no worse than usual, she said well you have a fever, it was almost 101, which is really high for me........ I told her I never know when I'm sick until I'm pucking or near dead, she just replied, Oh, that's not good.......I wanted to scream, Help Me than!!!! But I didn't. I figured what is she going to do that ALL the others haven't tired?




God Bless!

[Sarojini]

I have fibromyalgia and myofascial pain syndrome as well -- I have not been diagnosed with chronic fatigue syndrome yet, but my horrible episodes of fatigue are still there (and have been blamed on my fibro).

I am just now dealing with an episode. It began yesterday when I got so tired I began falling asleep at my desk at work. I couldn't focus on anything, couldn't concentrate from the "fibro fog" in my head, and it seemed I'd doze off even if my eyes closed when I blinked! Later, we had our monthly "birthday party" for people born in January, and I was so tired I nearly fell asleep at that. My husband works in the same department as I do, so he was there and saw the signs of the impending episode of fatigue... he insisted I go home and offered to drive me. I drove myself, but I wished I'd taken him up on his offer because I just wanted to sleep behind the wheel...

When I got home I slept for three hours, woke up long enough to eat and watch a little TV, and then went back to sleep and slept twelve hours last night. Despite that, I just now took an hour and a half nap. *sigh* Luckily, my husband knows these episodes well and is doing chores and things so that I can be in bed or in my recliner with blankies, sleeping when needed.

I hate it because it's always accompanied by aches and pains from fibro, and IC pain and other symptoms.

Just circles of pain and fatigue, pain and fatigue... ugh....

All I need to do this weekend is baby myself and sleep as much as I can....

[Kimchi]

I am set to see a rheum on Wed for a possible dx of fibro. I have the extreme fatigue and muscle aches accompained my severe nausea and just feeling "sick" This is truly awful. My question is this, when you are flared, do you get "winded" just walking short distances? And does anyone else have chest pain? I have had some panick attacks lately w/ chest pn and a trip to the ER showed everything was normal. I have read that CFS can mimic signs of heart problems like SOB, air hunger, etc.

I can not believe that someone w/ fibro, CFS, etc., could feel this bad. This is an all time low for me. I have never been so sick in my life. I just pray for something like cancer so I will have some real trmt.

If I could shake this horrible nausea and general sick feeling, I think I would be okay. And to make matters worse, my child's first volley ball treatment is this coming weekend in Chattanooga. Will have to drive from GA. How am I gonna survive that trip like this?

[DaniBelle]

We've not 'spoken' for a while. Sorry to hear you are feeling so doggone awful! It's enough to have these diseases, but on top of them...feeling like your body is full of the flu or something. A few months ago (before I found I had Fibro), I went to my GP and requested a B12 shot. I had remembered my Mom talking about her friend or an aunt of mine saying they went for a 'boost' and were able to get their energy back for a couple of days. Anyway, I got the shot and within 30 minutes, I was cleaning the house, grocery shopping, and without one ache or pain. It was great. I called my GP back and asked if I could have 1 shot per week, but they're pretty strict about it (AARGH!). She said my blood would have to be tested monthly and IF the B12 level was below a certain point I could have a shot, but only one per month after each test result! I've tried the subliminal B12 and tablets. They don't do squat. Just a suggestion, but since we are very similar in our conditions, it doesn't hurt to ask your GP! At least you may get a day or two of relief. In fact, there is a lady on this site who said Urologists are finding a correlation between low levels of B12 and IC. I wish it would be a simple as that....just a shot and we're back to normal! I hope you feel better real soon. Make that call!

[maryla]

Kimchi,

I too have that all over sick feeling, Have you ever have your stomach looked at.....When my ic decided to come back full force a few years ago, I was just soooo sick, dizzy and felt bloated all the time, My gastro examined my esphogous (sp) and they found an infection call H-pyloia. But just thought it may help........I was just telling my husband today......I don't know how much longer I can endure feeling like this.:cussing:

Oh, also when, my bladder really hurts, my GERD, IBS and all the stomach stuff starts in too. I believe I read somewhere that it's not unusual it happens, after all the stomach has a lining as well that goes away too like the bladder lining does in ic......

I hope you find something out soon!!

God Bless

[sue041]

Yes when my IC acts up I also have my Gerd acting up and so tirerd like I have been beaten my face hurts and I just hurt all over. My left arm aches like a tooth ache and so sick and faint feeling. I just can not understand how one person can have so much happening to them at the same time.I get my granddaughter up for school and cannot wait to go back to bed, It goes on for a few days at a time. It is hard to understand or make yourself hop to and get things done.It is very rare that I get up feeling good and ready to go. I just dread having to get up and go to the DRs I have to push myself all the time.I was wondering if anyone on here takes some kind of vitamins to help them get up enough energy to do the daily chours. I know the lord only gives you what you can handle. I just keep praying that something will happen and they will find a cure.
Thanks for listening, I bet you heard it all before.

[donnadb40]

I suffer from fatigue so horribly that it's all I can do just to make it through EACH AND EVERY DAY!!! I am my family's sole source of financial support and I do work a full time job (with autistic 2 and 3 year olds no less!!) but I don't know how much longer I can do it! My son is a junior in high school so I've got a college tuition to think about as well! My husband is not as well educated as I and makes just enough money to pay our house note and that's IT!!! No matter how hard he tried, he couldn't make much more than he already does! The constant financial stress just compounds the actual physical exhaustion!!! I'm at the end of my rope:cussing: :cussing: .

[DaniBelle]

I have to get my youngest to bed, but I will write to you tomorrow. I will pray for you to feel better soon!

We've all got to figure out why so many women are suffering from these debilitating diseases! Are they putting stuff in our food? I'm getting sooo mad, because there's just no explanation why it's getting worse, not better!

Hold on!

Dani

[Kimchi]

Thanks for the responses guys. I know this was not my thread. I had posted my own last week and I got 2 responses to it. I am just very frightened right now. I want some answers. I just want to make sure it's not my heart. I have a lot of sxs of heart problems but my internal med Dr just brushed me off and pushed an rx of Paxil off on me. I see the rheumy tomorrow and I am gonna just lay it all on the table. I am also going to see a new PCP soon. I need a "team" of Drs to work together along w/ me to get me feeling better. This is pure madness. On the up side, I can say since starting Ambien for sleep and have been getting some rest finally, that is helping a great deal. Now, I just have to get this sick feeling and nausea under control.

[maryla]

Thank you all for posting! I don't feel so alone now. I was getting really scared too. Like KImchi, I thought maybe it's my heart. Both my parents died from heart disease, I may still ask my primary to so a stress test. Just to rule that fear out.

I had one dr. tell me that my body is constantly trying to fight off what it sees as an infection, that's why I'm tired. BUT it has just been horrible. And those of you who have small children, I DO NOT SEE HOW YOU DO IT!!!! I commend ALL of you. There is no way I could take care of children with this, HATS OFF TO YOU ALL You deserve an award for this!!!

My love goes out to you all, God Bless!

[kjd]

Oh yes sometimes I am too fatigues to brush my hair and feel faint. I have had an mri scan (last november) and they didnt find anything.
Doctor just told me that Fatigue is part of IC!
I have ME too which makes me feel even worse but at the end of the day I think anyway living with IC would suffer with fatigue. Pain can be one of the most exhausting things in life I am afraid and I dont sleep well either due to frequency.
I work full time but most time I walk round liek a zombie close to tears!!!

You're not alone
xx

[maryla]

Donna, Honey my heart goes out to you! I do not see how you do it! This disease and everything that goes with it is just horrible. It doesn't stop for us! God Bless You Honey! I'm going to pray that something opens up for you so you can get the much needed rest.

God Bless You again,

[chihuahuaMoM]

I know what you mean kimchi ,, im tired all the time ,,, sick all the time,, and i m sick and tired of being sick and tired too. I would like to know why women suffer with this too ... and i have fibromyalga and this ic and i find out more and more symptoms on this site that i have that wasnt sure if it was the ic or not . this site is great!

[donnadb40]

Thanks for the prayers Mary!! I will pray for you as well! I just wanted to tell you that I have been Dx with a cardiac arrythmia... I forgot what he called it but I have my records and I will look it up for you and post it tomorrow.. It definitely does contribute to fatigue and if you suspect this, you should definitely check that out!!! For alot of us, I think it's just the combination of all of our illnesses combined. Most of us have more than 1 diagnosis that can/does cause us fatigue! Also, just being SICK OF BEING SICK is TIRING in itself!!!!! Hope WE all find help and answers soon! God Bless!!

[maryla]

Honey, It sound like it's time to maybe to start the process of SS. I DO NOT see how you are making it physically. Since you do have the heart stuff too, you may get approved a lot faster. Right now, I'm going on about 14 months of an appeal. I did call the SS office yesterday and talk to a case worker there. She told me depending on my situation, finances, physical heath, my lawyer could ask for an expedited court hearing. I called my lawyer, of course I didn't get to talk to them but, he is going to know that, that is what I want him to do......So hopefully something soon will happen.

I'm praying that your situation gets better........

Love,

[maryla]

Hi Girls,& Guys.......

I was not sure to really where to post this.......but I thought this may be an ok place. I've decided that I am adapting a new outlook on my life.......I realize that almost 3 years ago when my IC and ALL the other diseases decided to occur over the next few years, that a part of me died.....I use to teach my clients that "YOU ARE NOT YOUR JOB" I've come to the realization that I lied! Not only to them but most importantly to myself.......I lost my ability to see the GOOD in this HORRIBLE disease...For the most part I have lived my life as a positive person.......But somehow, I just got sucked down by all this.......I'm not sure when it happened, But last night I started thinking about, NOT WHAT I LOST, BUT, WHAT I CAN DO NOW..........

I said the Serenity Prayer........

GOD GRANT ME THE SERENITY TO ACCEPT THE THINGS,
I CANNOT CHANGE, TO CHANGE THE THINGS I CAN
AND THE WISDOM, TO KNOW THE DIFFERENCE........

I was stuck on the ACCEPTANCE......God HOW can I accept being this way? I've for the most part have been a decent human being......I've always worked hard, put myself through school working 3 jobs sometimes, Had great work ethics......HOW could this have happened to me? Being stuck, kept me a victim of my diseases......I wasn't able to see past that for a long, long time.....

I realize NOW, there are SO MANY THINGS THAT I CAN CHANGE........

PLEASE GIRLS & GUYS THIS IS MY OWN WAY OF BECOMING ACCOUNTABLE TO MYSELF.......I PRAY YOU DO NOT TAKE ANY OF WHAT I CAN CHANGE PERSONALLY UNLESS...SOME HOW IT IS FOR YOUR OWN BENEFIT.......

THINGS I CAN CHANGE........

1. I can get up and shower for the day, make myself presentable.......most days, I don't even get dressed! Even if I'm hurting really bad, I can take a whores bath, face, arm pits, privates.....I can brush my hair.....put on make-up....most days I told myself.....what's the use, I'm not going anywhere?......

2. I can change my thoughts, my behavior, my feelings, NO ONE has that kind of control over me......It is my choice IF I choose to be around negative people, places, and things......

I totally forgot that WE choose our thoughts, feelings and behavior.......

I believe in the power of DREAMS......Not the kind when we fall asleep at night, but DREAMS of Imagintry....

LOOK at Jill.....THIS WHOLE NETWORK STARTED WITH JUST THAT...A DREAM

Somehow.....I lost my ability to do this????

But I am taking BACK my power and reinvesting in the POWER OF DREAMS....

I realize that I CHOSE to stop dreaming......It doesn't mean that it's going to be a bed of roses, LIFE IS NOT LINEAR......I'm not certain but I can almost bet that when Jill started this whole site that she did have problems, NOT only with her health but with getting everything together........ONE THING SHE KEPT DOING (MOST CERTAIN)......IS DREAMING

I can choose to think negatively or positively......My beliefs, That I forgot is...how much my thoughts create my reality......I believe that we are all made up of energy, both negative and positive... It is our choice of which we decide to attract.....I believe that if we think icecream, We are going to act icecream.......Therefore, what I project is going to come about, or what I think, neg, or pos...is going to come about......It's the same as dreaming.....

I have just been going through the motions of living....I haven't really put my heart into believing that I AM SICK, I HAVE DISEASES, that may or maynot get better....I CHOOSE NOW TO BELIEVE, that Iam "just for today, this moment, this second, a child of God, Who is going to accept that I do have limitatations, That is for sure, I may not have the life that "I" chose for me....But it doesn't mean I have to stop Choosing, I can chose to LIVE, this day, this moment, this second, the best of my physical and mental abilities that I am capable of.......(I now have a lot of FM fog somedays).....I CAN DREAM......I CAN DREAM OF THE PERSON THAT GOD WANTS ME TO BE JUST FOR TODAY, THIS MOMENT, THIS SECOND......and my thoughts, my feelings, my behavior......


Thank you ALL for listening to me.......I don't know if it all makes sense to you, But it does to me.....:smile tee

Hugs, Specialist say we need 5 a day.....

[Claredale]

I am exhausted, but not sleepy. Does that make since. I take so much meds just so that I can sleep for a few hours. There are times that my exhaustion does cause me to drift off for a few hours. Like late in the week last week and over the weekend, I just couldn't stay awake for more than a couple of hours. I had a doctor's appt on Friday and he told me that I had a pretty bad bladder infection, but since I am usually in pain, I really couldn't tell the difference. But by the weekend, I felt the pain from the infection. I have only had a handful of actual bladder infections in my life of IC (almost 2 decades). I am anemic, so the doctors normally attribute the exhaustion to that.

Jen, I am glad that you made it home safely. I know that I have experienced a few times of being so tired at work, that I just cry and pray that I made it home. The only thing when I do get home and excited that I can crawl into bed, I can't sleep. I guess it all works out that we are just tired of being sick, tired of thinking that this new med will work, tired of our house being a mess, etc.

Hugs

[Kimchi]

Marlya, what a beautiful post. Makes me wanna do that to! Nice pep talk to those of us who get sucked up in the whole finality of it all.

[Bessie]

Thanks for the words of encouragement.......makes me have a better attitude :smile tee

[maryla]

I know our minds plays a HUGE role in what is going on with us.........Just ask the marathoner, who keeps saying to themselves, I can do this........:smile tee
Oh, I love your thought for the day!!!!

Hugs,

[Eccles]

(((Mary))) Yes, I know the fatigue you describe; I have fibromyalgia & myalgic encephalomyelitis (CFS) too.

[maryla]

What exactly is CFS? I have never heard of it. I go this week for an MRI and stress test, Doc wants to rule out MS and Heart stuff. But never heard of CFS?

Hugs,

[aprilchen]

Hi,

There are a lot of resources on the internet on CFS. Here's one: http://www.cfids.org/. It states that CFS is, "characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period."

See: http://www.cfids.org/about-cfids/symptoms.asp for more.

There is also a questionnaire on this page: http://www.cfids.org/about-cfids/do-i-have-cfids.asp that helps you determine if you truly have it.

I had a friend before we moved with the Air Force who had it and she sometimes just had to call in sick because she couldn't even get the energy to get out of bed. She told me once that she learned to, "listen to her body and when she felt bad, to rest." Hang in there, we all will support you.

God bless and *hugs*

[ad8123]

I was told that the fatigue can be caused by IC but after tons of blood work they found I also have Lupus and have been told by my doctors and many books and web pages that Lupus can make a person need as mucha s 12 hours of sleep a day? But who knows why but I understand. Justwanted to post a reply since I am able to sit up now that I had my galbladder taken out. good luck and god bless.

[kjd]

Hi Donna

I'm the same as you. I have chronic fatigue and have to work full time as I have to bring the money in!! I only just make it through each day and dont know how long I can go on.
I just wish I didnt have to work full time as I find it so hard.

How do you get through the day?

kate
x

[kjd]

Hi Mary

Chronic Fatigue Syndrome is also known as ME. It's been around for a number of years now and they have changed the name of it a few times, ie it used to be called post viral syndrome.

its commonly caused by a sever virus or illness which causes pain. It's symptoms are sever fatigue, difficulty concentrating, stomach pains, feeling sick, achs and pains, sore throat and feeling faint and weak

thanks

kate

[Katrina]

Just wanted to let you know that when it comes to the extreme fatigue that you are talking about that is me too! Seeing an alternative doc about it in March! IT is worse during winter than Summer for me so this is a hard time of year!!! :grouphug:

[ad8123]

Well glad to know I am not alone but a positive note I take a med called provigil 100mg. It helps with fatigue I think it is also used for narcalepsy. It helps a lot but you have to take it early in the day because it can keep you up I try not to take it everyday though only when i need it.

I am still trying to find more natural methods I have found guided hynosis at night helps me sleep :smile tee better.
Angela

[Katrina]

Anyone suspect Epstein Barr Virus for their fatigue? I was on Valtrex for a while recently I felt it helped my fatigued a bit. Have an appointment with an alternative doc in March for help witht he fatigue but something tells me that there is something we do not know causing it.