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Discussion Wall Archives, January 10, 2005

BonBonshortnsweet Thursday January 06, 2005
Hello To All Of You: You can relate to me as bonbonshortnsweet. I have been suffering from this Fibromyalgia, for a good 15 years now, at least. I was just diagnosed recently, last January, approx. Anyway.....been to many doctors, like you, not really getting any real straight answers, lots of pain, many medications, migraine headaches, carpal tunnel in 2 hands, degenerative disc disease, with 4 herniations, bursitis of the hip, and many other ailments, to accompany the severe pain & fatigue that I feel on a daily basis. I recently lost another job, like the many others I've had, only to realize that I can't contribute to the work force, because my body & my emotions just can't cope anymore. I see a psychiatrist too, because of depression, & panic attacks.

O.K., I am just going to briefly tell you, that I was hospitalized last August, with a nervous breakdown, after losing my job (from another issue/related to my condition), & was ready to commit suicide. I don't want to depress anyone, because, at this point I am better, and would not be on this site if I weren't. I have been through lots of counceling, mended my marriage (got closer w/hubby), and have finally accepted my loses, only to realize that this is a new beginning for me. I am not terminally ill, but have an illness that must be managed, and kept up, or maintained as best I can, with support. I read all of these posts, and I think it helps me a lot. I don't feel as alone anymore. I am 45 years old, proud of my children (3 boys, 23, 19, & 16), all blessings that I count every day. They are beautiful children, in that, they accept my disability now, and help me as much as possible. My husband too, after a "hard door opener", has showed me just how much he loves me. We are in this together, but I do need people like me that suffer with chronic pain on a daily basis. Also, at this point, I am going to file for disability benefits, because after going down this road so many times with past job experiences, I have finally made the decision to stay home, nurse myself, take care of my family, and try to enjoy life a bit. I have even thought about volunteer work, which I plan on getting involved with very soon. I think I am going to end this now, because I am finally tired, after taking a new medication that was given to me today by my rheumotologist, it is Zanaflex, a muscle relaxer. Well.....I hope I told you all a little bit about myself. I thought I was only going to write a little, but somehow the words kept spilliing out. Have much more to say to you, my friends, but, hopefully I can tell you more at another time. God Bless to all of you, & Happy...Happy New Year. Please take care of yourselves & be kind to yourself, treat yourself to something nice for the New Year. Bye....bye....bonbonshortnsweet!!!

Linda/TX Jan. 6, 05
I was reading a really interesting article on FIBRO..if you would like to read it... in it's entirety go to the following link:-
"Fibromyalgia: NEW Insights Into a MISUNDERSTOOD Ailment" .
@ImmuneSupport.com
http://www.immunesupport.com/library/print.cfm?ID=6192
We always need information that will set the "light bulb" off in our heads..and give us some ideas of how to better understand the "WHY" of this condition. One paragraph from the article is as follows : "Type A fibromyalgia patients work and work and work until they burn out," said Murphree. "Type B patients give and give and give -- nurturing their spouses, children, family and friends -- until they break down. Anyone whose lifestyle includes VERY LITTLE DOWN TIME is at risk." ( Sound familiar to any of us ? )

Judy l/6/05
Talk about fibro fog I tried twice and sent without nothing on the page.LOL

I also take ambien 5 mg. My dr. prescribed 10 mg. and I break them in half it saves me money also to get the 10's.

I also would not be without them. They make me sleep a good 8 to 10 hrs. each night and I wake up feeling no side effects from them. I am so thankful for this medication.

I would recommend them to anyone that can't get to sleep.

It's been so cold here in Oklahoma. We got ice but today it's sunshine and 17 so at least the sun is shinning and will melt the ice off. Some parts of Oklahoma got more than we did and had trouble w/downed power lines.

This cold weather sure shoots the pain levels up!

Take Care,

Judy

Fay 01/06/2005
Hello Bonbonshortnsweet, welcome to "The Wall"! Look forward to more post. Sounds like your part of the FMily.

Have a warm day!

Fay 01/06/2005
Hi Deb, You live close to me. I live on the outskirts of Waco. Just past Elm Mott. My Dad has a travel trailer just outside Elm Mott and the trailer park he is in has a lot of country. Lot's of space to ride his bike. He likes to travel alot, doesn't stay in one place too long. He's been here since Febuary of last year. He said he's getting trailer fever because of the weather. He's a retired truck driver. Still in his blood I guess. My mom always said he was part Gypsy. ha He's actually German and Cherokee. I remember when I was little Dad would come in and say, "pack-up, we're move'n", and off we'd go. Me and seven other brothers and sisters. I remember one time I counted 7 schools I went to in one year. It was great! Never a dull moment! He's 75 and still on the go, maybe that's why, he never sits still for very long! Wish I had just a little capful of his stamina. When my Mom was alive we used to joke with her and ask her how all of us came to be because Dad was on the go so much. She would just laugh and she would look at us with a twinkle in her eye and say, "He did rest sometime!" I'm glad he did Mom! Oh, I've been in the same house for 33 years. ha

Good and peaceful day to you all!"

Barb(Pa) 1/6/05
Happy Birthday January babies !!! Welcome newbies !!! Loaded up and ready to roll to California. Stay warm and gentle hugs to everyone. Faye,tell your Dad hey from me a fellow trucker.

Katielady 1/7/05
Good morning FM'ily- I haven't posted in awhile and wanted to wish all you dear people a Happy New Year! I mentioned a couple of months ago that I was going to try the new anti-depressant Cymbalta. I have decided that it isn't for me. I tried to stick it out, but I was finding myself spiraling into a deep depression, kind of similar to my reaction to Wellbutrin. I will say that the first 2 weeks on it were great, I did have an increase in energy but then it vanished. On another note my doctor sent me to have an MRI of my brain, he wants to rule out multiple sclerosis. I have been having a hard time swallowing and some kind of weird activity in my head. Kind of like a jolts of electricity going through the front part of my head. I looked up MS and the interesting part is that it is so similar to fibro. The symptoms are very much the same, and as with fibro there is no definitive test to prove you have the disease. The biggest difference is that MS is debilitating over time where they say fibro is not. Personally, I think fibro does get worse over time, at least for me. I wanted to share the info in case this may be of interest to anyone else. Hope everyone have a peaceful pain free day. Hugs to all

BonBonshortnsweet Friday January 07, 2005

Good morning everyone. Thank you Fay for welcoming me to the Wall. Sometimes it is hard trying out new places, but this place seems special. You all sound very nice. Take care, Fay....& you also enjoy your day!

Hi Katielady! I just wanted to tell you, I also tryed Cymbalta. Sorry it didn't work out for you. For me, it's been good so far. Supposedly, it is an excellent medication. It helps depression, and at the same time pain. With me, I still need extra meds. at night, a muscle relaxant, just prescribed to me, called, Zanaflex, for severe pain from muscle spasms, which I have been suffering from recently. In the day, I take Ultracet, which works good too, but, if I go beyond 1 pill (can take 2), it leaves me with a migraine, after it wears off.

Well guys......I am off to take a hot shower, then I am going to physical therapy. Love reading all your posts! XXX000
Ellen - Alabama 1-07-05
Hey All! It is dreary here too. At the first of the week it was very warm, in the 70's. Talk about wanting spring. Now today it is in the 40's.Brrrrrrr.
My dad loved to travel too. He was in the navy in World War 2. I guess I took it after him. Sometimes I wonder if he had FM.
He would have tremendous headaches and he took so many tylenols. He would work all the time too, with 7 kids at home alot what did we expect. I guess I was the same way.
I would work at least 6 days a week and on the 7th day I would work around the house or in the yard and I would keep going until it would start turning dark outside.
There were times I thought I couldn't left my arms anymore and have to soak in the tub when I would finally stop. There were many times that I didn't realize what time it was until I was telling my son's to go to bed at 9. Then I still needed to get a bath and clean the dirty clothes we had used that day and finish in the kitchen. And had to get up by 4 in the morning. I miss those days, being able to work outside and work with my flowers. I know my hubby misses that woman too. He still expects me to be able to go like that now. But I have to tell him whoa.

About the ambien, I took it when I had my hysterectomy. I loved it. I had a very sweet nurse who would come in about the same time every evening and give it to me.
I would sleep all night and it was a restful sleep and I would not wake up hung over the next morning.
Oh I forgot, my dad was also german/cherekee decent. So was my mom. My FM started after a series of surgeries and one tramatic event with one the surgeries where I had to stay in the hospital for two weeks and I barely remember those two weeks. Nothing but a IV and a suction tube down my nose. I could not eat for those two weeks either. I had a lower bowel obstruction. I hope and pray I never have to go through that again. But the docs. told me I have to watch it because with my history that it will happen again but they don't know when. So when ever I start throwing up I panick and run to the ER. They told me that is what they want me to do. Just to be on the safe side. Hubby gets aggrevated because they don't do anything but take blood and do xrays. But I told him that I have to becafeful. When it did happen he just looked at me and said maybe it's just a virus, my sis said no there is something wrong. She took me to the ER and they kept me for the two weeks. They said if I had waited until the next day like hubby wanted then my intestines could have ruptured.
But hubby doesnt like hospitals and he hates doctors. But he is trying to understand that when it comes to that stuff I have to be careful. I am sorry for being so long. I like to come on and talk and read the post because I know yall all understand. Hugs and prayers.

FAY 01/07/2005

Good Morning All,

Had one of those 3 am wake-up calls this morning. You know, where the eyes pop open and your wide awake but the body says, “please, not yet, I’m still tired!” This is a time I take to remember my friends and family and say those extra prayers and ask for extra blessings for them and me and just talk. (Yall are included.) Sometimes I drift off back to sleep before signing out and sometimes I don’t. Another cold and dreary day here in Texas, but the weather man promised warmer weather Sunday, Monday, and Tuesday. Maybe I can try out my bike then. Ellen----Your right to go to the ER right away. My Dad did wait, 9 years ago, and his intestines did bust. The doc said he was lucky to live through it. He had to wear a bag, (don’t know what you call it) attached to his stomach for 8 months. Then they went in and finished the repair. He was very blessed. So don’t wait! Barb---I’ll tell Dad you said hay. You know, I think he has that diesel running in his veins. That is one of the reasons he chose the trailer park he did, because he said it was off I-35 and the sound of the trucks would help him sleep at night. (ha) My ex-husband was a truck driver and sometimes I went with him. The longest I stayed out was 2 weeks. I did miss the humming of the engine when I went to sleep when I got back. I know I sound crazy, but I missed the smell of the truck too. Maybe it just reminded me when my Dad would come home when I was little.(ha) Well, take care all!

Have a gentle day!

Lara 1/7/2005
HAPPY NEW YEAR EVERYONE!!!!!! Well to make it short and sweet.. rain, rain go away. Come again on a better day. like when we don't hurt as bad. well I geuss you all know where I am coming from... got to run warm fuzzy hug to each and all...Lara

mymichelina 1/7/2005
Deb/Tx...Thank you for your interest in my well being. I am the same....today made an appointment with a psychiatrist for "medication management". I have a therapist, and my primary doc has been subscribing medication (celexa and wellbutrin now) but it just ain't cutting it. Still taking tht Miralax....has any here experienced the type of intestinal problem I have? It is called "colonic inertia"...my large intestine does not function. It is not known if it is related to Fibro,he said it may be neurologic in nature. Thus trying to get it jump started and functioning..if not, I will lose my large intestine.....If it works I will then have surgery for a prominent entrocele and a rectocel. Not too fun. Katielady......at first my doctor was sure I had MS. I had brain MRI that showed non-dyliminating (sp?) white spots in pons and midbrain that would indicate MS. However a MS specialist said that the spots don't point the way they normaly due in MS. I was told that Fibromyalgia can show these white spots also. Let us know how it goes.This is a great site and I try to post as I can. But sometimes I just read and just don't have the energy to post. No wonder it is hard to have friendships with this disease, our good times are not consistant....and at times I just want to curl up in bed and speak to no one....that is not how the "old" me was. I wish you guys all warmth and comfort. Thanks for being there.

Dee ~~~ Friday January 07
Hello Wall...hello fm'ily. It's been awhile since my last post...been kind of busy with family matters. Won't bore you with them.

Welcome to all the new FM'ers. You have found the best support group in the universe. You will find this group has more information and compassion than several years now and have made more friends here then at home.

MYMICHELINA...I too have the white spots in the gray matter of the brain. Was tested for MS and was told that isn't what I have. After all that testing they told me it was FMS and I would just have to learn to live with
it. How comforting is that? My depression is under control for the time being. I take Celexa and it has helped. For pain control, I take Lortab 10 and it does take the edge off enough for me to cope. I have found I need to keep changing my meds as they quit working after a period of time. I wish you good luck and hope to get to know you better as time passes.

BONBONSHORTNSWEET....What a cute name...lol. Welcome to our little corner of the world. You seem to have your plate full of ailments and still have a good head on your shoulders, along with a big heart. It's so nice to meet you. Am looking forward to knowing you better too.

BARB...You are off again to California huh? Told my son about you and he is on the look-out for you. He drives for D&D Sexton Truck Lines. His handle is TAZ and he's promised me he'll look for you....lol. Safe trip friend. Keep the shiney side up.

LINDA/TX....Don't you just love ImmuneSupport.com? They really have bunches of new info constantly. I signed up for their newsletter years ago and it's one I haven't canceled. Thanks for keeping us informed about articles, like you do.

So many new names here that I don't know, so I will consider you a newbie. Kay, BonBonshortnsweet, Robbi, Jessie, Mymichelina, Fay, Carrie, Judy and Ellen...It's so nice to meet you!

Gentle Hugs and Warm Fuzzies.....Dee

DEB/TX SATURDAY 1-08-05 1:30AM
Howdy-do all...I should be in bed as I am really tired right now...but I had to drop in a moment after reading! Still cold here today..but they are promising warmer weather for the weekend...so I hope to get outside a bit.
I managed to work out Tue, Wed,Thurs.....Friday I was just TOO tired.
Woke with a headache and was really achy so I slept most of day..but by afternoon I was able to get up & get some house work and laundry accomplished and I actually cooked dinner too. So all in all I had a good week.
I hope most of you had a good week too.
May you all find a few FUN things to do this weekend and check in with us afterwards and let us know what you did.

FAY: Since we are so close maybe before the year is over we can touch base and actually meet each other face to face. That would be fun. I would love to meet your dad to. Did you get sleet the other day? We just got rain...lots of it.

DEE: Hope your family matters are not serious problems. We do like to hear from you and see your little devil too.

MYMICHELINA: I know all this doc stuff and "NOT KNOWING" is a real mind bummer...but hang in there. My experience has been they do all these tests for all this bad stuff then we end right back at the beginning with Fibro as the thing it is. So try not to worry and just take it all one day at a time. Where is it that you live? Do we have any fibromites living close to you? If you can hook up or click with a few main people for support I think it really helps. I have made some really good friends from this site. Hope you can do that to.

LARA: Now dear if you are going to tell the rain to go away...would you mind sending the cold away with it next time...THANKS...LOL.

ELLEN: It sounds like you have had your fair share of pretty bad illness's....and now fibro is going to hang around just as a little reminder of how miserable daily life can be sometimes. I have had fibro for 25 years and my for 30years...and it has only been about the last 3 years that he has really begun to understand and pitch in to help. Now granted before that he was real good not to complain when I did not do things...but he lacked a bit in the helping department. Today he is very good to feed himself...and me too occasuoionally...LOL. He picks up after himself a lot better, and will fold clothes if I get them into the washer and dryer. I can even get him to do dishes too once in a while. So I have no complaints about him these days. But it did take him a LONG TIME to realize that I did have someting that was NOT GOING AWAY.

BARB: Be safe on your California trip. Try not to put out your back. Catch some rays for those of us who are freezing our pants off.

JULY:Did you get to do the 4 day work week this week? Was just wondering how it went if you did.

Well ladies I would like to welcome all you new ones..read and write any time...we are always happy to be here for you. Happy Birthday to those of you born in January! Hope you all have SPECTACULAR birthdays!

DAN: I hope you are feeling better?! Did you get your meds all worked out and are staying home long enough and resting enough for everything to take affect and your body to recover? I will write you soon and see how you are REALLY doing!

HOPE YOU ALL HAVE A GREAT WEEKEND...Talk to you all on MONDAY.

Extra Gentle warm hugs to you all..... DEB

Katielady 1/8/05
Happy Weekend!!! MYMICHELINA- thanks for the info on the MS and the MRIs. I don't really expect any definitive answer on Monday when I see the doc, but I will let you know what they say. That's interesting about the fibro folks having the white spots too. My friend's mother went throught the same thing, yes it was MS, and then no it wasn't. It's so stressful to no get a defiitive answer from the doctors. I live in the No VA area, and I don't think it is ever going to stop raining here. All of this chilly damp weather is making me feel miserable. But I have to go and clean today. Been putting it off for too long know.......Sunny hugs everyone!

Linda/TX Jan 8, 05
Hi everyone....been fighting this "cold bug"...THOUGHT I was ahead of it here..but apparently not so. Not feeling so great today. Talk to you all later. NOT SLEEPING so good either. Love, Linda/TX

Starr 1/8/05
Happy New Year to everyone. It has been several weeks since I've been on but I have missed all of you. I have a question - have any of you tried lexiepro (antidepressant) or skelaxin (muscle relaxer) and if you have, how did you do with them. My sleep doctor (I have sleep apnea) wants me on the lexiepro in the morning and the skelaxin at night. I'm reluctant to spend the money on them because I don't do well with these types of meds. He wants me on them because I am having EXTREME daytime fatigue (falling asleep at my desk). Any help would be greatly appreciated. Thanks.

Jessie/Oh 01/08/05
Hello everyone, hope all is well with you all. I haven't posted in a couple days because of a lovely ice storm that took out power in three counties plus. I ended up at my mothers house for one night and two days. That was fun, I am the oldest of four children, and my 3 brothers still live with my mother, get this, in a 2 bedroom apartment. So picture this, me 30, my husband 36, my four children, a 13 year old a big as me, a 9 yr. old, an 8 yr.old, and one soon to be 7, my first younger brother who is 28 6'2", the next almost 25 also as tall as the other one, and finally the one who is last he is 23 with a 3 yr. old daughter. Talk about a FULL "CRAMPED" HOUSE, I couldn't wait for our power to be on, even though my house looks like a disaster area, as well as all the tree branches laying everywhere. Like they say, there is no place like home, and YOUR OWN BED, well I said that but for most of us it is so much the truth. Still kind of recouping, so I am going to go. Warmth and hugs to all.

Marion
Marion Jan 08/05 Greetings from Ontario Canada.
I enjoyed reading some of the postings on this site and wanted to say hello.
It is nice to read from others who understand how I feel.
Since I spend so much time home by myself I find myself looking for company on the internet.
Right now my husband is out watching my 17 year old son play hockey.
I can't go because standing in a cold arena just makes everything worse.
But some days I get really sick of my own company.
I hope everyone is keeping warm and cozy tonight.
Hugs Marion

DEB/TX 1-08-05 Saturday
Hi all...well today I have to join the ranks of the miserable!! Really hate these kind of days...woke hurting from head to toe, with a headache to boot! YUCK!!! It is a cool but sunny day here so I would expect to feel better..go figure...sometimes I think we will never figure this monster out. I drove yesterday and that for me is usually a big NO-NO. So it seems I am paying the price today...neck, shoulders, wrists and hands hurt beyond belief and the headache matches on the pain scale....so it has been a stay in bed day for me...which I hate and detest as it is a WASTED DAY...one more day stolen from my life. Guess by now you all can tell I am not a happy camper and I have even taken all my meds that should make me Happy!!HA,Ha LINDA/TX: Sorry you are still down...with our Texas weather hopping from hot to cold and rainy I somtimes wonder how we ever stay healthy. I hope you get back up to par soon, but from what I hear we have rain to look forward to again by mid week...so stay in and stay dry my dear. Get well...we need your wise wisdom and I miss your notes! STARR: Do you use a sleep apnea machine at night? I really want to know more about them so anyone using them PLEASE tell all. I am wondering if I need one and if it would help me get more restful sleep. I have a friend with asthma and she has one and has been after me for years to get tested to see if I need one, then my sis-in-law just got tested, she has diabeties...and she says it has helped her a lot...but I want to here from OUR KIND. I know you have to go thru tests and all to see if you need it...I just want to hear what differences they have made on those of us who have fibro who now have them.
Starr give the meds a try...it will take two weeks to get a good level in your body...then decide if they seem to help or not. Or take one for two weeks, see how it does then start the other and that way you will know how you are reacting to each med. JESSIE/OH: Your stay with mom sure sounded WILD!! i am not sure I could have done that one...but I guess for electrical and hot water you can do just about anything...LOL. I would need a month to recoup from an experience like that! Good luck in recovering from such a CLOSE FAMILY ENCOUNTER!!! LOL MARION: First you get my full admireration(SP) for living in Canada. BRRRRR I was raised in Michigan and if I had to go back to that with Fibro...I know I would die in a day!! I remember those days on the ice. As a kid it was great as an adult it would be horrid...but hockey is the game of your area!! I had to laugh at you get sick of YOUR OWN COMPANY....I know the feeling!!! I say all the time I am a horrible person to be alone with...but I find myself having to tolerate me more and more...LOL. If I can get out of the house I am good...but couped up in the house..looking at what needs to be done and not feeling like doing it...YUCK...!!! The sad part is I do not like TV or reading so I really am STUCK with myself...very scary!! LOL. Thank goodness for radio...and funky dancing as I have NO TALENT in dancing.
Well all....I hope tomorrow is a better day for us feeling low today and for those having a great day I hope it continues. Warm hugs to all DEB

Kathy in Maine Sunday, January 9th, 2005
DEB; I just came on to check out what was going on and read your post asking if anyone with FMS is on a sleep apnea C-PAP machine. I've been on one since last spring or summer. It really seems to be a big help to me. I also take my Ambien just as I'm getting into bed and I'm sleeping and dreaming all the time now. So I'm getting my REMs that I was struggling for before the machine. I find that if I try to take a nap without using it, I have trouble sleeping. So; I guess I would say that it's worth all the testing and inconvenience of traveling to get tested after all. Good Luck with your experiences in that department.
Best wishes for pain free days to all..... Gentle Hugs, Kathy

Barb(Pa) 1/9/05
Hi FMily, Golly talk about an industry that is unpredictable...we got 528 miles from home and got a call from our agent that the load we have on our truck has been recalled by quality control and has to be returned to Williamsport. We will deliver it back to the shipper in the morning,reload and be off to Florida.I'm looking forward to sunny weather and a visit with my sisters(one lives there,two are leaving Pa tomorrow for vacation there).We have been having cold, ice and snow here,so anything sunny and dry will be an improvement.Does anyone in here still take Celebrex? I take very few of them, they work so well I hate to give them up since I wouldn't know what to take in their place.Welcome newbies,and gentle fuzzy hugs to everyone.

Katielady 1/9/05
Hello Everyone-Ah,Monday is too close already! It seems the weather is wacky everywhere. It has been so rainy here in Northern VA and the temperatures are all over. Today is 41 degrees and tomorrow is to be 60 degrees. Doesn't help the body much. Starr-I take Lexapro. I posted a couple of days ago that I had decided to stop the Cymbalta. Lexapro was what I had been taking prior to the switch and I have had no problems with it. The only problem I ever had was with Wellbutrin. It's been my experience that you know if it's not working before you know if it is. I know it's expensive, but I think it's worth a try. I would not like to think of not having mine at all! Life is better with it from sleeping to just overall mood with me. Good Luck! Let us know how you do. Linda-I hope you feel better soon! Barb I am so healous! Florida sounds great right now! Peace and hugs.....

Linda/TX Jan. 9-05
Hi everyone, glad to see so many writing.. even those that have not been on the Wall for a while...it's great to hear from you again. AND welcome NEWBIES.
As I earlier said, I have been down with a "bug"..but today was able to get out of the house and get some fresh air..and the the air in the Houston area today...is fragrant and wonderful..smells like SPRING here. My husband even thought he saw a ROBIN today. Felt SO GOOD to get out.
Barb, sorry you had to do a turn around, that must be a bit frustrating to have to "backtrack"...when you think you are heading someplace like California this time of year..but Florida is GOOD.
Kathy do you have to go thru a sleep study to get a C-Pap machine, my brother likes his too..say's he is sleeping MUCH better as well. I NEED SOMETHING more...the Ambien even fails me at times.
Marion, you know..being ( forced) retired for over 7 years now..and my husband and I are together 24/7...I can honestly say, I like being alone.... some of the time. I have the opposite problem tho ....I have too many interests..reading, photography, some special TV programs, my computer, working with PhotoShop, surfing the net for FIBRO info..and Art related idea's, etc...BUT with AADD.( Adult Attention Deficit Disorder ) ..and FIBRO...I have a hard time sticking with one thing for long. However, I do like my internet friends a lot as well...they are really my "social life"...as most of us well know, maintaining our "normal" friends and making new ones when we do not feel so great most of the time, is very challanging...it is for me anyway..how about the rest of you all ???
Hey Deb...sorry you are feeling so crummy...with FIBRO "crummy happens" for sure.
and speaking of crummy....I still am dealing with NIGHTLY headaches..and just am really getting totally sick of them. I almost never get them during the day....( Thank Goodness )...so it has something to do with the bed, pillow or bedroom I believe. Its the kind of headache that starts in the shoulder muscle..and goes up my neck, over the top of the top of my head into my left eye socket....If ANYONE has any ideas for a REMEDY... let me know. Perhaps, I will have to think about a different kind of pillow..and if that does not work..maybe a new mattress...one thing at a time...least expensive first..and go from there !!... If it were not for these HEADACHES...I believe would be getting about 6 or 7 hours of sleep a night otherwise.
Jessie, I had to LAUGH...I spent the first 20 years of my life living with and around 9 to 11 people most of the time...and only ONE BATHROOM..imagine that ?
Starr, do not know anything about those two meds. sorry.
Yes Dee, I do love Immune Support.com they have a LOT of good info. I go into info overload... there is so much out there now..NOT LIKE when I first started KNOWING I had FIBRO..where the was so little info. OK...enough of my "ramblings", I will say good evening...and sweet dreams to all. Linda/TX

Jessie/OH 01/08/05
Hello all, I made a very big mistake today. I felt great when I got out of bed so I thought well I'll get some packing done(we're moving into a new home soon) boy oh boy that was a mistake. I did very little but when I was done I felt like I had packed up my whole house in one day. I felt so stupid, I should have known better. It got to the point where I couldn't stand the achieness, I am out of pain killers and my muscle relaxer wasn't quite doing the trick. So what I did was took two shots of Nyquil, I figured what the heck it says it relieves flu symptoms, maybe it would take care of these as well. I was shocked, it did for the most part. Well I wish everyone a restful and painfree night. Including myself..LOL.

Jessie 01/09/05
Sorry about the date mix up.

Starr in WV 1/9/05
Hi everyone. I hope you had a good weekend. Mine was so-so. Dealt with some extreme fatigue and sleepiness. And a little depression.

I have been using a cpap machine since last summer. It stands for "continuous positive air pressure". With sleep apnea, your throat is basically too small and you don't get enough air down it. Consequently, you stop breathing. Your body wakes up enough for you to breathe but you don't come all the way awake so you don't know what is going on. However, your body gets very tired because it keeps waking up. Most people with sleep apnea snore but not everyone. Also, it has been diagnosed in children as young as 2 years old.

You have to go to a clinic and have a sleep study done. They hook you up to a bunch of electrodes to monitor you. Then after the doctor reviews it they do the same thing except this time you also sleep with the breathing machine. You can either have a mask that covers just your nose or one that covers your nose and mouth (that's the one I use most of the time). The mask fits on with a velcro harness and a lightweight hose that hooks to the machine. You use distilled water in the machine and it blows moisturized air in your face, forcing you to breathe.

When I had my study, I stopped breathing over 100 times, my longest time was almost 20 seconds. My oxgen level dropped to 77 (70 can cause a coma) and my legs moved almost constantly all night (I got more exercise then than during the day!!). With the machine my oxygen level is around 97. Also, before the machine, when I work up, it didn't matter if it was every half hour or two hours, I had to get up to pee. That is a side affect with sleep apea. Now when I wake up I usually just need to re-position myself and I can go back to sleep.

I know that I have a much better quality of sleep now. I also use it for naps. Also, the doctor told me to sleep on no less than four pillows. If you do a search on sleep apnea you will find lots of info and pictures of the machines. It does take a little getting use to the mask but you can sleep on your side with it. The new machines are very quiet. The biggest problem I have is that even though they are very lightweight, my face sometimes gets too warm so I usually sleep with a small fan running.

Sleep apnea can be very hard on your heart. I don't know how many of you got the news last week about Reggie White, the football player, who died as a result of respitory problems, but he also had sleep apnea. I think most people who have fibro also have sleep apnea but don't realize it because we have so much trouble sleeping anyway. I also take a medication called Provigil which is a form of Ritalin. I hope this has been helpful.

I'm still looking for infor on the Lexapro and the Skalaxin. I've decided to put off taking them until I see the neurologist this week. Sleep well everyone.

BonBonshortnsweet, Sunday January 09, 2005
Hi all: Having been feeling too well all weekend. I ended up in the emergency room on friday night, with very bad edema in my lower legs & feet. Took a battery of tests, including urin, blood work, sonogram on both legs up to my upper thighs, and also had a chest ex-ray. I believe they were ruling out the worst. Anyway....my son, took me up at 4:00 in the morning, when he came home, saw me suffering with pain & frightened at the extreme water bloatedness. The only thing they could tell me, was that I apparently don't have enough sodium in my blood. Not sure exactly what that means, but I did some research on the internet, and found it could be a number of things....from, water overload, kidney failure, lung diseases, meningitis, trauma, conjestive heart failure, or adrenal insufficiency, which I think the last is likely the case, because I have nausea, dizziness, no appetite, tired, & extreme pain all over, of course I usually am in pain, but the pain is even worse. My ankles are chubby right now, and I can only wear sneakers. When they weighed me at the hospital, it appears I have gained about 20lbs of excess water. Well....it better be, because I haven't eaten much. It's making me feel very slow and I can hardly lift my legs up. Horrible feeling!! I heard some of you talking about sleep apnea. I was just diagnosed with that too. I haven't gotton the machine yet, because I had to go under my insurance. The doctor was so nasty that I was recommeded to go to from the sleep institute, that I decided to just stick with my regular intern doc., whom is very good, but wasn't familiar with ordering the machine. I know how to order now, and am just waiting to feel better with this other problem. Feeling so tired, well take care all, and hope you all feel better & god blesses us all.

July, on Jan. 10
Good Morning, FMily! Lots of catch-up reading to do here, and not a lot of time to do it in! Sounds to me like most everyone has spring fever, but I suspect it will be a while before nicer weather decides to stay. I think I'll try the four pillows at night and see how I sleep. Personally, I think it will put more pressure on my aching hips. (That seems to be where winter settles with me.) I did NOT get to do the 4-day work week last week, but told my boss I HAVE TO this week. Linda's quote last week about people working and working until they collapse hit home. That's what I always do: get feeling a bit better and then work until I can't. It keeps me from starving, but keeps me from getting my strength back too. I'm nearing the "stop" portion of the cycle. Thanks for sharing all the info and research. This is the best place to come! Wishing you all a good day. HUGS

July, on Jan. 10
Some of you may want to check out http://www.cnn.com/2005/HEALTH/01/06/canada.internet.drugs.ap/index.html. I saw on CNN this morning that they're considering a re-import ban on pharmaceuticals from Canada, that the U.S. can no longer ship to Canada if Canada is going to turn around and resell to us for less money. That's all I need is to have to double what I'm spending. OBVIOUSLY Canada wouldn't do it if they weren't making something off it (the article says $700 billion a year), so U.S. pharmacies must be making something too, but want more??

Linda/TX Jan 10, 05
Good Morning all...JESSIE...I guess I did not give you the PACE YOURSELF speach...SO important..in anything we do.
JULY, I wish I had an answer for you, my daughters In-laws get some of their meds from Canada too..her mother in law has had a kidney translplant..and so her meds are VERY expensive. I am mostly on generic's so not too bad price wise I guess. STARR, I was asked to take a SLEEP LAB study, but was feeling so badly at the time, that I opted to put it off..but I am thinking maybe that I should do this now...but I can' sleep well in my own bed..so HOW in the world do you sleep in a strange bed and get a TRUE reading...and I understand that you can't use any sleep meds..is that correct.. ???
Well, DEPRESSION , that's a whole different ballgame...mine seems to run in cycles...am in a depressed cycle right now..because of these nightly headaches. Hugs, Linda/TX

Judith
Judith Jan. 10-- Insomnia: Amitriptyline quit working for me, so I tried nortriptyline, gave me horrid nightmare from which I awakened in a panic. Has anyone had this experience with any sleep meds. It worked, but I am afraid to use it. Tried Ambien for a few days, but it caused muscle aches, as do all the meds for my severe osteoporosis. The first I went off Ambien, I had a terrible night full of panic and almost total sleeplessness. Do go off Ambien gradually, if you stop taking it!
Yesterday, I went off sugar and spent 30 min. looking outside at the gray sky. I slept pretty well! When my husband asked what I want for my birthday, this month, I said a full spectrum lamp. Has anyone tried one? Did it help?

As to sleep apnea, I sometimes find myself breathing deeply, involuntarily, with a big gasp, when awake! Is this awake apnea? :-) I am usually a deep breather, so I get enough air, I think.

jeff williams

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Jessie/OH 01/10/05
Hello again all, I've been reading all the posts about sleep apnea, and the machine for it (C-PAP). I think it is great if it helps you all sleep better. I personally do not have those problems, that I know of, but my husband does and he won't go get a sleep study done. If anyone has sleep apnea it can be very serious, and after reading your post JUDITH, don't take this the wrong way, but that is scary. You need to go get yourself checked. I had a friend who's boyfriend had a very serious case of a sleep disorder where he would just fall asleep, didn't matter where he was (driving, talking on the phone, visiting with company). He wouldn't get his self checked, one day she went to his house to see him before work and found him dead. He fell asleep and stopped breathing. So for anyone who thinks they have sleep apnea, where you actually stop breathing in your sleep, Pleas....I BEG YOU...go get checked. C-PAP is an amazing machine and I had no idea it would work for insomnia. I am very happy it is helping those who use it, a restful nights sleep for us is very important. I hope I didn't come off overbearing, but I need you all, we all need each other. Hope all is well tonight. Warm hugs and God bless.

Marion Jan. 10/05
Thanks for the welcome from everybody. I had a sleep study done 2 years ago. Fortunately I wasn't shown to have sleep apnea but restless legs did show up which can also make you really tired. The medication the the doctor gave me called Sinemet made me really ill. LINDA: I know what you mean about short attention span. Some days I find it hard to even focus my eyes for any length of time or hold any position comfortably. Since it is very cold here, it hasn't been above freezing in a month, and everything is covered with a layer of ice and snow I am feeling very isolated. A good time to find some new internet friends. DEB: you are right just being able to get out of the house helps. Being from Michigan you would understand. I live in the country with a long laneway which was glare ice for over a week. I fall easily so even though I was sick of my own company it was better to stay at home. Today I went into the city, had an appointment with my therapist and did some shopping. I know I will pay for my busy day and I am exhausted but it really felt good to get away. Keep warm everyone hugs MARION

Linda/Tx
* "Depression is merely anger without enthusiasm". Altho this quote was meant to be funny...how many of you would agree with this statement ?? I am thinking it is pretty close to RIGHT myself. Oppposite opinions will be considered. LOL Linda/TX

mymichelina 1/10/05
Linda....that quote is very interesting and I think fairly true. I am always saying how I am angry that I have this...that I don't want to "accept it" as part of my life. so I will say I agree with it. Jeff I have heard of that and plan to participate. I am thankful I do not have sleep apnea( at least I think I don't). I have found that I sleep ok when I take 2 Xanax and a trazadone. Don't wake much if at all through the night. Bonbon.....how are you doing since your hospital visit? Jessie..I don't see how you can possibly move. If I had to I would have to pay someone to do everything. Linda... I also feel the way you do about the social aspects. I do not meet socially with anyone and have not for a year. My "friends" decided it was not too fun to associate with someone ill I guess. I have 2 friends that I still communicate with, I have known them both over 15 years....but they live a distance away, so our contact is limited mostly to internet communication. I like to talk to fibro friends.....but I sometimes do not even feel up to that. I will read, but I just can't bring myself to type my feelings. So if you don't hear from me online...I am still reading! I have my family that I communicate with as well as my 3 cats and 1 dog who keep me company all day with their unconditional love. I am in Southern California, and I cannot wait for the rain to stop....I know we need it but it becomes very depressing after a while. Hugs....

Starr in WV 1/10/05
Hi everyone!. I heard a great sermon on TV last night about not letting things that happen to you cause you to lose your joy. I really needed that message today!! LINDA, I don't take any medication for sleep. My sleep doctor says that is one of the worse things people with fibro can do. Also, I found out most sleeping pills overreact on me and Ambien made me very sick. For the sleep study I took my medication as usual. They even let me play my CD I listen to a lot. It is a little weird with all the electrodes on but surprisingly enough I slept there about as good as I did at home. All the electrodyes were plugged into one place so when I needed to get up they only had to unplug one plug. You can bring your own pillow or anything else you need.

I was up most of the night last night, I could not get comfortable but it wasn't the mask that was bothering me it was my sciatica. I found out my baby granddaughtern was also up - told my son to call me the next time, maybe the baby and I can hang out together in the recliner LOL

The sleep specialist I go to says that most people with fibro have sleep apnea because fibro is basically a sleeping disorder. I'm going to try to Skelaxin (also known as Soma) but I only took a part of one tonight since I didn't get to take it when I should have. Also, I made myself go to Curves after work to do some exercise. I really like going there, they aren't pushy. Plus, I know I feel better when I have done some mild exercise, as long as I don't over do it. Hop everyone has a good night.