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Old 06-06-2004, 02:56 PM   #1
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Join Date: Nov 2003
Location: PA.
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tam821 HB User
a request from you?

HI, I need a favor from others with fibro. ...... My family looks at me and thinks nothing is wrong, they wont take the time to look it up to see what it it.... I need to prove my case here. My biggest problem is I cant sleep, I finally fall asleep at 6 am. and sleep til like 11. They think I can just fall alseep at nite, whats the big deal. but i try to tell them I CANT... they theres the brain fog, I forget stuff and mix up things, I laugh about it, ya have too..
and of course the muscle pain.. OUCH... I cant make plans at all, and I hate to promise i will do something, then back out, but I dont know if ill sleep tonite, and no sleep means, pain!!!

Will you pleaseeeeeeeee, tell my family that this is real, that sleep , imsomnia,
is a big part of fibro. and tell me a bit about how your getting thru this.

What I want to do is print all the replies out, make cpies and hand them to my family member, my dad, my sister, my sons,,, my husband does undertstand this, i am so glad...

I appreciate all your help..

many thanks,
TAMMY M.

Last edited by tam821; 06-06-2004 at 02:56 PM.

 
Old 06-06-2004, 05:01 PM   #2
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Jenetti HB User
Re: a request from you?

ohhhh hon, so sorry for what youre going thru. Trust me, fibromyalgia has alot to do with sleep problems. For some reason people with fibro cannot get that deep sleep normal people do. Stage 4 i think, we dont get that, and thats what you need to get your cells renewed and to recuperate from the day. Without sleep, we hurt more, we cannot think straight, we cannot function. TRUST ME, this is for your family. IT IS TRUE. IT IS ONE OF THE number ONE problems with people with fibro. Along with fibro fog, irritable bowel sydrome and a bunch of other symptoms. One major one being extreme PAIN.
Do you take anything for sleep hon?? I take elavil for that deep sleep. Without it i cannot sleep and trust me i have gone up to 48 hours and more without sleep .
Elavil allows you to reach that deep sleep and even with that, we still have lots of other problems to deal with. Fibro is very real. I am also on lortab and soma (muscle relaxer) every day for the pain management. We never know when we will have a flareup which means extra pain on TOP of the normal pain.
We all live with the problems of saying yes to something, an event or plan something only to be let down because of the pain or the draining tiredness that goes along with fibro. Im glad your hubby believes you. I pray your family will learn to believe you as well. Simply because we look fine on the outside does NOT mean we are well. All i know is that with spousal/partner and family support, life is a bit easier for us. We all need that support. My prayer is that you receive it from your family sweetie and they educate themselves about fibromyalgia.
Love and hugs,
Jen

 
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Old 06-06-2004, 06:43 PM   #3
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Join Date: May 2004
Location: Western Colorado
Posts: 457
taurus3 HB User
Re: a request from you?

Hi Tammy,

Jen said it all fabulously. I'm sure you will have many replies by tomorrow. We all go through what you're describing. I can't count after 12 years with fibro how many times I have had to cancel or change plans and spent the day crying because I was missing out on something. Just the word plan is a dirty word in my house. Luckily my husband also understands and I am thankful for you that yours does. But you need more than just your spouse.

It took several years for me to get my close friends to understand my unreliability. I worked up until two years ago and since then I've really become a flake. And I miss out on many things. I will write more tomorrow but I just wanted you to know you're not alone.

Will write more later...hands hurt. - Andy

 
Old 06-06-2004, 07:22 PM   #4
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Join Date: Mar 2003
Location: Balt. MD USA
Posts: 127
Pattyanne HB User
Re: a request from you?

I just wanted to tell you I am the mother of a daughter (age 36) with fibro. Her not sleeping and feeling so bad the next day has gone on for years. She thinks I am the only one who understands all the problems of this condition. We have both cryed as we tried to convince family, doctors and friends that this is a real condition and a problem that won't go away. Be thankful that this board is here because these people, (who have fibro) are the ones who truly understand and sympathize as they try to go thru their lives on 1 or 2 hours of sleep. Let's hope God doesn't punish the other people for their lack of compassion.

 
Old 06-06-2004, 10:54 PM   #5
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taurus3 HB User
Re: a request from you?

Hi Tammy,

Guess what? I can't sleep! So since my hands have rested for awhile I thought I'd finish replying. So where was I? Oh yeah unreliable. Anyway, that is part of the reason I had to quit my job. I used to be able to rest every night after work and on the weekends, then go do another 40 hour week. I would have one or two really bad episodes a year where I would be home for at least a week. It was difficult but with my doctor's notes I was able to keep jobs anyway because I was very good at whatever I did. But I got to a point suddenly very quickly where I couldn't make it 50% of the time.

Insomnia is only a small part of it really. Part of the reason I often can't sleep is because so many different parts of my body are in pain that I can't find a comfortable position. I have to change position about every 10 minutes and often stand or walk to loosen up whatever has seized up on me. I don't know too many people who can sleep while standing and lying down and standing and lying down.

I want to talk about pain for a minute. I think people who don't have this illness can't have a clear conept of what we mean by pain. It's not just feeling "sore" or "stiff". So here is my experience. Everyone's is a little different. Maybe this will help your family understand.

When I say I'm in pain it could mean one or all of the following: swelling in various parts of my body that feels like I've been bruised, joint stiffness, throbbing muscle soreness, muscle spasms which can be anything from a twinge to a cramp which my husband has to rub out with the theracane while I do lamaze breathing so I don't pass out, muscle ticks where my arms or legs move on their own, migraine headaches starting in my eyes and face, TMJ jaw pain which prevents me from chewing or talking, a sunburn like itchy rash that makes it feel like my skin is on fire and I need to be naked, pins and needles in hands/feet and other parts of me, shooting nerve impulses throughout my body and groin (like someone is sticking pins in my genitals), deep inflammation in my feet making walking feel like I'm doing it on gravel with bare feet, hands cramped closed into a fist, back pain from sitting longer than 10 minutes, carpal tunnel in my hands and arms, and intestinal cramping from IBS.

Some of the other things that happen to me are, brain fog, visual disturbances (spotty or blurry), dizziness which comes from the inner ear troubles of fibro, dry mouth, dry eyes. I'm sure there's more but that should be enough for anyone. When I get the muscle ticks and spasms I often injure myself if I'm trying to do something like cook or do housework. My husband has to do most of the housework but I try to do as much as I can. When I shower sometimes I have to use a shower chair because when I close my eyes I fall over.

As far as the brain fog, this did not hit me until the last few years. But I can tell you that I thought I was losing my mind at first. Not to brag or anything but I have a genius IQ and was a midlevel manager when I quit working. I did great in school and have always been the one at the party who could beat everybody at scrabble or trivial pursuit. Now I am lucky to remember why I went to another room in my house. Or I'll be talking and just drift off into space for a moment and the person I'm speaking to will have to remind me what we were talking about. And this is not from medication. I am six months pregnant and haven't had ANY drugs for the whole time and all my symptoms are still as bad.

I can't wait til I can have my codeine and flexaril back because I hurt all the time. But I've already sacrificed one too many dreams because of illness. I figure I went ten years without pain meds, I can do it for 9 months. Mind you I'm not a pill popper when I have them. Another phenomenon I have with fibro and also having lupus is that drugs stop working for me if I take them regulary or daily. So I've learned that if something works I should only take it when I can't get out of bed. I always take less than what's prescribed, one a day instead of six a day and so on.

The most painful part of having fibro/lupus has been constantly feeling attacked by the world that can't see my illness on the outside. I always have to educate people because half the public hasn't even heard of either illness. I have lost friends over it. Of course I guess they weren't really friends. If I had a dollar for every time I heard "well you don't LOOK sick." Defending one's self and then also dealing with the constant loss and grief over what you're missing out on is heart breaking. Much worse than the physical pain.

You have to fight your doctors, your employers, coworkers, social security if you're disabled. Add to that your friends, family and lover and life can really become bleak.

I don't WANT to be sick. I don't WANT to be not working. I don't WANT to take bed rest half of my week. I am so sick of resting I could puke. Even with all my ailments I still do regular exercise even when it hurts like hell because it's physical therapy which isn't fun for anyone. I'm afraid I need to use it or lose it. So I'm not just lying in bed every day waiting for a cure. But when the pain, muscle spasms and muscle weakness take over, I have no choice but to rest. Rest doesn't mean sleep just not moving around or exerting myself. I sleep if I can but that's hard to do without drugs.

Tammy I hope this helps your family understand. It's a painfully long post on my part but I guess I had a lot to say.

May you receive the love, support and help you need from your circle of loved ones to deal with an awful disease. But even if you don't you have all of us to turn to. Here's wishing you sweet dreams...

 
Old 06-06-2004, 11:09 PM   #6
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Join Date: May 2004
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taurus3 HB User
Re: a request from you?

One more thing...you might want to print the thread called "Can I vent please...If I could scream this I would." People talked a lot in there about what stinks about living with fibro and I think it might really help your family understand.

TTFN - Andy

 
Old 06-07-2004, 01:53 AM   #7
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typingterror HB User
Re: a request from you?

Really good answers. I am so glad your husband understands. Do not feel like you have to justify your actions to anyone. It is best to only be around positive people as the negativity will drag you down. We don't make plans we do things on the spur of the moment when we are able. "Normal" people will never understand so save your strength on more important things. Here is my own FIBRO definition - Feeling Impaired, Beaten, Really Overwhelmed. We are always here for the good/bad and will pass no judgment. (TT)

 
Old 06-07-2004, 11:53 AM   #8
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Join Date: Nov 2003
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tam821 HB User
Re: a request from you?

oh thank you soooooo MUCH. ..and yep i do feel like I have to justify this all the time. thats the worse. I guess its hard to be so active, then BOOM, just getting thru the day. I will print this out, Hopefully, they will see this is not in my head, there are many others in my shoes, and we are trying out best to cope,
I want to thank you all for your letters, and I pray that each of you have a better day today than yesterday.

you guys are GREAT

TAMMY

 
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