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fontanille posted:
another thought. It seems a lot of us have fatigue. So what does everyone else do for it? I personally don't have time to stay in bed. I have a mother with alzheimers and a very sick dad to take care of.

Is it just me or does this community seem to kindof like have a clique between a few people? I know I haven't been here long, but I would expect some discussion on all the things that come with this crazy illness or whatever you call it.

I feel sorry for us that suffer and can't seem to find relief for days or weeks. I don't know about all of you, but I have been so mad and wanting to throw and tear up stuff cause i can't get any relief and can't help my family. It seem to me with the technology we have there has got to be something to help us through the horrible times. I feel like I am really losing it!!!!!!!!!!!!! I ask my husband today to get a hammer and just beat the ****out of me and maybe some of this pain would go away. Of course he wouldn't. I have taken a hammer to my muscules before and it feels great, but doesn't last long.

I could go on and on, but I guess I should try and get some sleep.

Donna
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1wareaglefan responded:
Dear Donna, I responded to your post here, but for some reason it didn't show up, so I'll try again. I'm so sorry you're feeling so bad. I understand what you're saying about the fatigue. That's what I'm really battling right now. That, plus the guilt of not being able to keep up with everybody else, and family/friends not understanding at all! Whew! I guess you can tell I'm really frustrated with it right now.

Anyway, I'm also sorry you're feeling like there's a clique here. I know on my part, I come here most everyday and read, but my fatigue keeps me from responding to many posts. I haven't always felt that way, but this summer has been especially rough. So it's not a personal thing at all....it's just where I am right now. I can't speak for the others.

I'm taking celexa (antidepressant), skelaxin (muscle relaxer at night), and hydrocodone for pain. This cocktail keeps my pain and depression ok, but as far as the fatigue goes, I haven't found anything for that yet.

I just started taking d-ribose, because I read where it was good for fibro fatigue. I'll let you know if I find that it helps me.

I hope your day goes better today. There's lots of care and support here. Please keep coming!

Take care......ELizabeth
 
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Anon_10089 responded:
I am sorry you're having a rough time right now. I think many of us have been there.

There are many discussions on fatigue and I think someone asks about it at least once a week. I've found that wellbutrin has helped with my fatigue and fog. The biggest help for me is exercise. I try to exercise 4-6 days per week. I does cause me pain, but I feel better overall and my fatigue is greatly helped.

I've been in this community for a couple years--I mostly read posts and comment here and there. I have to say, though, that I don't think there are cliques here. Sometimes the board slows down and comments become fewer. And sometimes I think there is no rhyme or reason to one discussion getting more comments than others. Of course discussions having to do with "hot topics" like narcotics and such usually get a lot of attention.

I only say this to try and reassure you, not as an argument. I think people here are incredibly good at showing compassion to each other.

I hope you're able to find some relief!
 
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Dollbug responded:
Hello Donna.....MiMi in NC....I wanted to reply to your post about fatigue....I have had major problems with this since I found out that I had FM...I have tried all sorts of things....hoping to find something that would help me cope better with it....there are days when the fatigue is actually worse than the pain that I have....it is not good for the mind or the body....there are days when I think my mind and my body do not even belong with either other...I have been caught up in trying to do things that I knew I would never be able to do...but still want to attempt to do...and every day is so different...

I hope that you can find something though...and when you do...please share it with those of us who are also having issues with it...

I would also like to comment about being upset about dealing with the wrath of the dragon, aka FM....for whatever reason...we are stuck with the ugly and mean illness...and I will also tell you this....getting upset about anything will NOT help you at all...in fact, it will just make things worse for us FMers......I learned this the hard way...accepting FM is the first part of getting better....along with having a good doctor who truly understands and treats it...

Everything that we FMers do...takes a trial and error process...we are all different...and what helps one may or may not help another....only you will know when you have finally found what it takes that will help you cope better...and to my knowledge...there are no quick fixes...none..

Our clique here is the wrath of the dragon....there are some of us who have been here for a very long time....in fact, so long that we know each other by name....there are some people who check in every now and then...and there are some who join and we never "see" them again....there are some of you who prefer to post without anyone knowing who you are...and that is ok with me....as most of you already know...I put MiMi in NC...in probably 98 % of my posts...

We are a FM support group....and most of us are here to help whomever happens to stop by and needs support or just perhaps a shoulder to lean on...for a bit...we are open to most any and all topics...

And I am assuming you know we have not one, but 2 doctos on board...whom you can direct questions to, by putting their names in the subject line of the post....

I do hope that you have read the info under "tips" and "resources" to the right of this page....as you might find something that will help you cope better....be sure and read the "member toolbox" and "nutrition and vitamins"....

Last, but certainly not least...I would suggest that you ask your doctor to check your Vitamin D level...which is so important for a lot of people these days....low Vitamin D can cause additional pain for some people...it is a simple blood test...but you MUST ASK the doctor to run it...as it is not included (yet) in the normal bloodwork that they do...

Sleep is so very important to us FMers....and also learning how to pace, pace and pace....

I hope that you will post often, ask questions, make comments and/or suggestions....and know that we are all in the same boat with you...

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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homecoming responded:
Hi Fontaine,
I can sympathize with your fatigue. It feels like being a prisoner in my own body. The primary person I care for is me as this illness has had me in its grasp since I was 26 and now @ 38 I don't feel it is right for me to have a child for many reasons. Please don't hammer yourself anymore. I know my feeling of desperation but I also know that that can only cause prolonged and increased damage. I should take my own advice, PLEASE BE GOOD TO YOURSELF!!!

To help me have some chance of productivity my doctor has described amphetamine salts (Adderal, Concerta).
I have posted this recently but I get lost in this place so I'm happy to repeat myself... no different then when I talk w the people I know, ha ha. If you do not have ADHD it has the opposite of calming. It was a saving grace for me and am pretty sure it helped me to stay working for maybe a year longer. Talk w your doc to see if this is right for you. I also have CFS and if I had a $1 for every time someone told me to exercise......
An article I found that helped me is at livingwchronicfatigue.com . The name of the article is Science behind exercise intolerance and chronic fatigue syndrome. The scariest part for me is that the fatigue is increasingly effecting my cognitive skills I had this discussion w/ my rheumetologist (sp)? as I was concerned if I was at risk for early Alzheimer. He said no but FM and CFS can lead to premature brain aging. Good news is that we can exercise our brains w/ games, reading writing ect. Even my brain is exhausted so I am having a tough time with that. I've also mentioned in some of my posts that I am clinical social worker. If I can help you with exploring supports for your parents please feel free to reply to this. I hope you are getting some sleep. I'm off to there shortly.
 
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me_n_my_4 responded:
Hi fontanille,

Sorry to hear that you are having so much fatigue but that is something that I can relate too. For me I was just diagnosed with Fibro 6 months ago but I think I have had it at least for the last couple of years. As a matter of fact I think that the fatigue was my main symptom along with the migraines for years before a started to pay attention to the fact that I was in pain all of the time in addition to being tired all the time. I started to see a neurologist which did a sleep study and she told me that I had a sleep disorder. I have a really high tolerance when it comes to medication so I tried a couple of different things until here we are 5 years later and I have finally found something that works for me and hasn't loss its effectiveness overtime.

When I was first diagnosed I was on provigil and I went from the lowest dose to the highest dose as it loss effectiveness overtime. Then I was put on Nuvigil and the same thing happened of course. Finally my doc put me on Nuvigil at the highest dose and adderall 25mg extended release and bingo that was my combination. Then I noticed that when not taking the Nuvigil the adderall seemed to work fine by itself. So now all I have to take is the adderall 25mg and it keeps me going for the day.

I don't have ADHD but apparently with people that have sleeping disorders and CFS adderall and some other stimulants have the opposite effect. For people that have ADHD the stimulant slows them down and relaxes them, however for those that suffer from CFS and sleep disorders it speeds us up a little. I just know that is the only thing over a 5 year period that has worked for me and it doesn't have me speeding around or hyper or anything and just keeps me alert and focus (which really helps with the Fibro fog).

I hope this helps and I hope you get relief soon because the fatigue within itself can be debilitating.

 
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Anon_2912 responded:
I use B12 & eat quite a bit of protein to keep me going through out the day. I do have to work, so I need all the energy I can get. But I have insomnia anyway, so sleep does NOT come natural for me. My body says its tired, but my MIND begs to differ..

Naps & 8hr sleep nights have never been in the picture for me. I am SO lucky if I sleep 2-3hrs strainght..Never happens...that is even taking 20mg of Ambien.
 
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fontanille replied to Anon_2912's response:
I am so sorry for venting the way I did. It's not fair to anyone on here.

As one said accepting this is my biggest problem. It just blows my mind that one can be in so much pain and can't get relief. I thought I had accepted this until my dad got so sick and I needed to be there and could not help much. I don't think I have ever been that angry since I found out I have this problem.

Thank you all for still being there for me and forgive me for taking my anger out on you all. I need all of you.

Donna
 
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angelldakota replied to fontanille's response:
dearest Donna... Hun this is the place to come and vent... We don't look at it as you are taking your anger out on us... We vent too... This is the place to share your anger and depression... your good times and happiness... this is where you will find understanding and compassion... some one will always know how you feel... someone will always be right there with you...

We are here to help you... please come back and vent all you need... share what is happening inside you... share what is going on in your world... don't fear taking your anger out on us for you would never be doing that.... at least you definitely didn't in this post...

keep coming back... we need you as much as you need us... I hope you feel better real soon... take care...
When you need a friend, reach out to a stranger and you will have one. If you need help, help someone else. if you need to cry, find someone already crying and celebrate life. Love Jan
 
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1wareaglefan replied to fontanille's response:
Amen to what Jan said! We all have those times when we're just so angry at the hand we've been dealt.

We'll always be here for you.

Take care....Elizabeth
 
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maggiethedoglover replied to 1wareaglefan's response:
I will second that! One of the greatest benefits of this site is that you can vent all you want and we will understand!

You're definitely among friends here.

Soft hugs to everyone,

maggie
Life is a shipwreck but we must not forget to sing in the lifeboats - Voltaire
 
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xperky replied to fontanille's response:
Donna, apology accepted, but not necessary! We all understand the frustrating times.

I agree with others that it's that very thing this thread is about - fatigue - that keeps me from responding to all the threads I'm interested in. Some days I seem to type on, some just read for a little while, but every day I think of this group and how we lean on each other.

For me, the fatigue has probably been with me for most of my life but undiagnosed or thought of as depression. True, I suffer from depression too, but fatigue can hit in any mood.

Coffee in the morning, and just plain pushing myself are my only coping methods.

Donna, you can lean on us any time.

Love you all,
Margaret
Life is wonderful when lived with love and compassion, Margaret
 
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glad2bhere65 replied to 1wareaglefan's response:
Hey, I'm the same way Elizabeth. Sometimes I'm just too tired to post replies.

Donna, I've been dealing with alot of the same frustrations, but I thank the Lord Jesus that I have Him to lean on. Otherwise I don't think I would be alive today. I hope you will turn to Him if you haven't already for salvation and hope and peace.

I've been in a very bad flare for about 3 weeks now, and I'm praying for a good day soon! Since I got fibro in November, I have only had a few good days here and there, it's one flare right after another most of the time. I'm very thankful for my son. He helps me out a lot.

Well, I have to go for now. I hope both you and Elizabeth are having a good day.

Linda
 
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fontanille replied to glad2bhere65's response:
Linda, I did lean on the Lord, but it was for my dad and not myself which I should have, but instead I got angry with myself, my body and this dragon.

My dad is home and some better, but we have to give him antibiotics through a line in his neck, plus we are still dializing him everyday and it is really taking a toll on him. the dr.'s never did find out what was wrong with him. My family thought we would have buried him this week, but God wasn't ready for him.

Hoping all will have a better day.

Donna
 
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xperky replied to fontanille's response:
Donna, that is good news about your dad being home. It did sound very scarey, the problem he had.

Are you able to get any free nurse help at home? It must be very taxing for you to give him so much care. I know it gets very tiring and stressful to have so much responsibility on your shoulders.

Take care of yourself too.
Margaret
Life is wonderful when lived with love and compassion, Margaret


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