Last post Sun, Sep 07 2008 3:31 AM by Cannoli. 1803 replies.
Hello All!
I'm going to try to do this again. I haven't been too successful on this website lately. I enjoy all of the postings and know exactly what all of you are going through. I have had fibo for a bit over 2 years. I have had to give up my job, my hobbies, and most all social events. I did make a showing at Thanksgiving last year. I have noticed that most of you post your daily meds...so here goes...
Lyrica 100mg 3x a day (Usually with a Norco kicker)
Cymbalta 60mg once a day
OTC sleep aid...just can't sleep without one
I am fortunate enough not to suffer from hign BP...actually it's pretty low.
I awake each morning with a body I would glady trade in for a new one. Thank God for my husband. He is my rock. He has stopped asking me how I feel every morning because he knows the answer....each day is the same...some worse than others. I did have a good day on Sunday and did manage to do some housework and I am paying for it now. I like to work in my garden but that is not something I will address any time soon.
I look forward to having an actual chat line. If I can call or email someone to put in my 2 cents worth let me know. I have a degree in 2 cents worth!
Hope to chat with you all soon!
Hurtn4crtn
Hi Betty
the sense of humor is from a lack of remaining good brain cells I guess I just find the world too funny to take seriously.
if you need more of an explanation please reference the song tears of a clown .... nuf said
as far as putting your picture up
Step 1 find a picture of yourself on your hard drive and note it's location file and such
then scroll to the bottom of this email and click the blue URL link it will bring you to this post then scroll to the top of that page and to the right of your name you will see VIEW PROFILE click it then above the grey box where your picture should be you will see chance or modify your avatar click it then click the browse button re-find your picture on your hard drive and upload it bingo you are done.
ahh computer service I love it so ( ummm ma'am the thing your steping on is the mouse not a foot peddle and the thing you are resting your coffee cup on is a CD drive not a cup holder ) and yes you do need to have electric in your home in order to be able to turn the computer on HEHEHEHEHE
just kidding anyway if you need more help just let me know
God Bless all who suffer
Gentle hugs
Jack
HI HURTN,
welcome to our little plot of cyberspace where the people are in pain and the pills are disappearing and everyone for 2 hours at a time has a goofy grin we are if you haven't yet noticed a wonderful group of pain filled folks who find that life is worth living even if it does appear to us to be made of slightly brighter colors, ( not to worry it has been my experience that it really is caused by our medication but shhh don't tell no one OK? ) ANY WAY now that you are totally confused
My name is Jack and I wish to welcome you feel free to add your 2 cents when the mood strikes or if you just want to ask what could be ahead for you but beware here the answers can at times be more than you are ready to know and may not in anyway pertain to the question you asked but that is our nature well at least my nature.
now alittle about FMS IT SUCKS thats about it
Gentle Hugs
Hi Hurt4crtn, Welcome tuo our family. Jack pretty much said it all. We are here for you just talking,listening and even laughing about our disease.I to became so sick a couple years ago i lost almost everything, Take ai kinds of medications pills,patches,short needles and long ones.What ever it will take to get rid of this pain. The best relief i have found is this site! I get al kinds of information , Great friends who understand, some laughs and even a good fight once in a while! Its great it makes you feel alive. so welcome. Big hugs Wendy
Thank you Jack, I finally got it, good or bad, it's there. It's kind of funny that your humor on computer parts were serious issues to some people at one time and maybe still are. I'm kind of one of those people who knows how to drive a car, put air in the tires even check the oil, but the rest is a mystery to me. That's how I am with the computer. My geeky husband is out of town for the week, so I could not ask him. Thanks for filling in. :)
Welcome Hurt'n. I personally have found this chat full of very nice people for the most part. Something Jack said reminded me of a Lost in Space little saying by the robot "Crush, Kill, Destroy". I think I got it right...anyway, that is my mantra for Fibro and I'm sure it has it's own mantra for me, but I like the sound of mine so I'm keeping it.
As Jack puts it, Gentle Hugs, Betty
Betty,
Hi, read your post. Just a quick warning. I know I told this to others before - twice maybe - so forgive my repeating about antidepressants. An antipresessant, which I took and needed, caused a nasty kidney infection. I know that par for the cause with them - but sometimes I don't worry about that. Thought it was UTI but it was kidney infection and had it a lot longer than I thought. It went into liver and looking to see if in my blood. Don't get me wrong, not worried just feel really sick. I'm a firm believer in antidepressants - just be careful and watch for warnings. It is mostly my fault it happened because I ignored the symptoms due to time of stress; also Fibro gives me enough problems. All is well and will be. I know a lot of us on them, just be aware. I'm going take them again, just not yet. I did not know the infection could get so bat - but go figure. Something else to go on my list of goodies...... I've always had a history of bladder problems and felt it could be nothing, so this time I was wrong. Anyway enough of that - good luck with all therapies. I'll keep reading. It is nice talking to you and I'll write again. Be well, a little less pain and have a wonderful day.
Maggie, I am so wanting post a picture of rabbit as a photo, just don't know to do it. So I guess I remain faceless (for now). Hope the move goes well and heart/prays are with you. Just got a feeling from above, that there is an angel watching over and sent you a red rose for love. it is a female don't know what means, it is for you figure out. You don't have to believe, most people don't.
Rabbit Lady
Hey there Rabbit Lady, I appreciate your concerns. I donate my urine on a regular basis right along with my blood so I'm up on that issue.
Do you want us to call you Rabbit Lady or something a little more personal? It's up to you of course.
Jack did a wonderful job of explaining to me a few posts back about how to get a picture in that little gray box. If you have a picture of one of your bunnies on your hard drive, you too can fill that spot up. Or, just go do a google search on images of rabbits and from there I think Jacks help would be needed again, lol.
You are such a sweet lady looking out for others and of course others are looking out for you.
I have my buddy Karr to thank for getting me here and she does not have Fibro. I asked her not that long ago why she was looking in here and I was blown away by her answer. She told me that she really wanted to understand my condition and sought out to learn everything she could. How she found Jack's specific string of conversation, I do not know, but she put it in a link to me, and I've been here ever since and I have thanked her profusely.
Your message to Maggie was so sweet, but I have to tell you, I'm one of those who does believe and I will tell you to not worry about those who don't, which sounds like you don't anyway.
I hope you are sleeping by now, wish I was....goodnight to all, Betty
Oh, Rabbitlady, what a wonderful message for me. I got all warm and tingly when I read it, as I do think I know what it means. And yes, I most certainly do believe! Wouldn't be here if I didn't....literally.
I am finally in a much calmer state and after resting all the long weekend (here in Canada), I guess I rested a little too much and was up all night.....LOL....Oh well, it'll straighten out again in a few days....I hope....LOL
That was interesting what you said, Betty, about the Amitriptyline vs Nortriptyline. I started on Amitriptyline, and did find it sedative well into the day....was sleeping til 2 or 3 in the afternoon....great, I'm up and day's gone! LOL However, I tried to switch to Nortriptyline and found that even more sedative and like I was on an acid trip or something......didn't like how I felt on it at all. So, the pharmacist suggested I try taking the Amitriptyline a little earlier in the evening, so I did that and now I take it around 8pm and can usually get to sleep by midnight or 1am....which after the last four years of being up almost all night, is a big improvement!
My girlfriend, who also has Fibro, says she can't take Amitriptyline because it makes her hungry, and she is trying to lose weight, although I didn't find that a big factor for me. Just goes to show you how different we really are, eh? I don't find the Amitriptyline helps me get to sleep, though, just helps me sleep better through the night, so I also supplement with Melatonin (a natural sleep aid) right before bed. Between the two, I am having better nights than before, although the Melatonin doesn't always work.
As I have said so many times before, you're probably all tired of listening to it by now...LOL....but the drs here give me NOTHING so far for the Fibromyalgia. Just this last year, my family dr finally relented to giving me Tylenol 3's which, although I'm grateful to have something, don't really help much. Plus, they're too hard on my stomach, so I have to eat a lot when I take them, and even then sometimes they still bother me. So much for that solution! LOL
I am hopeful that the specialist I saw in April will be faxing something else for me to try soon. He tried me on one medication that was for Parkinson's, but I couldn't tolerate it. Now that I have found him, though, I am hopeful that relief of some kind is on the way. I may be suffering from a few more delusions, but I hope not! LOL
Other than that, I take all kinds of meds all day long, but not for the Fibro.....high blood pressure (two different meds for that...Atican and Nadolol....a water pill (to go with the blood pressure pill).....two stomach pills a day from the damage that was done while trying to take anti-inflammatories......a medication to help stabilize my moods (which is actually an anti-seizure med) called Lamotrigine....an antidepressant (Remeron).....two Amitriptyline (10 mg each) at 8pm....and two Calcium plus D (for the Osteo Arthritis) and one multi-vitamin. I have had to purchase one of those "daily dose" pill packs so I can load it up for two days at a time and then go on about my business, as I was constantly looking at the clock and then wondering if I actually took the darn thing or not. So the little pill pack is helping with that part of the Fibro Fog! LOL
OK, I'll shut up now! LOL Love your posts, Jack.....keep 'em coming.....I love my daily chuckle when I read yours!
Gentle Hugs,Maggie
Hi All,
I am new here and just wanted to say hi. I have been reading your posts for a couple of weeks before I decided to join. I must say you are a bunch of truly caring people. I look forward to talking with you all. I have fibro, Chronic Fatigue, an Adhesions disorder which results in even more chronic pain, diabetes, GERD, Sleep Apnea, and the Drs. want me to have Gastric Bypass surgery because I have another hernia. I have been having a really rough few weeks and it helps to see that I am not alone. I have no support system. My husband divorced me and my two older children won't have anything to do with me because of these darned diseases. Please excuse my whining but life is very discouraging. My mind wants to do all kinds of things but my body won't cooperate. Then people who don't understand just think your being lazy or not motivated. I cannot sit here today so I have to go now but just wanted to get a little aquainted and say hi. Blessing to you all for a good day.
Pam
Hello Pam,
welcome welcome My Name is Jack and I'm glad you found your way here, nothing to be ashamed of here, we are all in the same leaky boat.
support is somthing we all need for some it is lack of family, for some lack of ability to move, and others it is the fibro fog that keeps us down. Regardless we all know what this disease can and will do to normal folks,
I on the other hand have visions of grandure and a superhero persona I call him FIBRO MAN my super power is Pain tolerance I cannot fly but I can LImp really fast for short distances then I need to rest for a day or so, You know superman's saying UP UP AND AWAY mine is OW OW HEY THAT HURTS . Oh and I like to make fun of evrything so just kidding about the super hero stuff
it may not be much but hey you have to take lemons life gives you and make lemonade and with a NORCO chaser it turns into lemonhaze woohoo!
any who welcome to our little party we call life here you can sit back or jump in the choice is yours I promise no one will twist your arm and call you names here there is no pointing and giggling or talking behind your back
well yes there is but it sounded nice LOL.
welcome and we hope you like what you read there are many informative links on this site and you can learn a thing or two also and maybe teach us all somthing new like maybe how to rebuild a small block chevy in your bath tub?
the point it come on in and enjoy
Hi Pam, I understand you and so does everyone else. I have fibro and arthritis. I have also had three vertebrae fused together and two new dics put in. My friends didn't understand me either until I told them to go to lifeinpain.com/node/2151. They don't presure me quite as much. If I say I can't do that today they don't always say "Come on it will be good for you.". They know now I will do something if I am able to. Whats bothering me is I want to apply for disability, but my husband thinks I am just giving up. I know he thinks I'm going to be [normal] again, but I'm not. I have no education to be able to just use my brain. I always did waitressing and bartended for the last 14 yrs at the same place. I know I won't be able to do that again. He thinks I will. He knows I hurt, he just thinks I'll get better. Can anyone help me. How do I explain to him I'm done. I am only 50, but my pain doesn't know that. If you can help please do. Take care everyone. Sandy
Hi sandy I copied this from another site
I hope it helps you help your family understand FIBRO better
THIS WAS COPIED FROM ANOTHER SITE
I have bought 2 books about Fibromyalgia since I was diagnosed in January 08 and I have been trying to find out everything I can about the disease. In the book she composed a letter for anyone that is having difficulty in verbally explaining to family and friends what fibromyalgia is or for those who are having a tough time trying to get their family and friends to believe that they have a disease that is not visible to others, just painful to the afflicted person.
She put this letter in the book and has given me/us permission to use it or adapt it for our own personal reasons. It is quite long and I apologize, but I found much of it to be so accurate and eloquently written that I felt the need to share.....so bare with me please.
Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibro though they might have wished they could on really awful days. I can't control how often I feel good or how often I feel terrible. If you want to read articles about fibro I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibro and that I have it. This may sound simple, but when you hear about some of the symptoms I don't want you to think I am making this up.
Fibro is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That's just the way it goes.
There's no cure for fibro, it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better, because I suffer from chronic pain and fatigue for which there is no cure. I can have good days, weeks, or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I may get more irritable before these flares, and suddenly get more sensitive to noise, or just collapse from deadening fatigue. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen, because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry.
Fibromayalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it is jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have them for pain. Sometimes it just hurts all over.
Besides pain we have muscle stiffness, which is worse in the mornings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may ask you to pull me up. I'm creaky and I'm clutzy. I trip over things no one can see, and I bump into the person I'm walking with and I drop things and spill things because my finders are stiff or my coordination is off. I just don't seem to connect the way I shoud. Hand-eye coordiation; it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall.
Because I feel badly most of the time I am always pushing myself and sometimes I push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special, but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms, are invisible but they are there.
Another symptom I have is problems with memory and concentration, which is called fibrofog. Short-term memory is the worst! I am constantly looking for things I have no idea where I put, I walk into rooms and have no idea why. Casualties are my keys, which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things I'm still liable to forget them. Don't worry, this is normal for fibros - most of us are fightened that we are getting Alzheimer's.
I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. To noise, especially certain sounds like the television, or shrill noises. Too bright lights, to fluorescent lights. To smells like fish or some chemicals, or fragrance or perfume. I also have a problem with heat and with cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They strees me out and make my pain worse, and I get exhausted. Sometimes I just need to get away from something, I just don't know how to say it. I know that sometimes this means I will have to go outside, or out to the car, or home to sit alone, and that's really all right. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just best to let me be.
I have problmes sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.
All these symptoms and the chemicals in my brain can make me depressed, as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm so grateful. I can't always admit it at the time, but I'm admitting it now.
I have other symptoms like irritable bowel and pelvic pain that will take their toll on our physical intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It is very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you. I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not show it always, I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.
As Claudia states in her book, feel free to use this letter, edit for your own person use or print it out and share it with family or friends.
I thought many of her points we very accurate and well written.
Have a great day my fibro friends and if this helps just one of you.....then it was worth it.
Kristine
GOD BLESS all wo suffer
[:'(] That made me cry because it says it like it is. Thanks Jack, Take care.
Hey everybody,That was a great letter i will share that with my family. Thank you Jack.I went to my appointment for aqua therapy i begin tomarrow, I dont want to seem negative but that shit look's painful! They are going to put me in 92 degree water and twist me like a pretzel! Oh good heavens what have i got my self into now! Well i will give it a shot,ONE SHOT! Boy i am terrible when it comes to people messing with my fibro,lets face it i'm in pain just sitting here typing. Well wish me luck, if you dont here from me ,I warned them about you guys and you guys dont here from me every day yoo guy's will send some goomba's looking for me and it wont be pretty! ( I guess you figure by now i'm Italian).LOL. Ah forgetaboutit I'll talk to ya later. Big hugs Wendy
