PapaRoux
06-20-2004, 03:10 PM
Hi--
Meds or no meds, am I the only one who has terrible pain every day and all day? I've heard that some people don't have FM as bad as others and there are degrees of pain. All I know is that pain is an every day thing with me and the meds just keep me going.
---Is it possible that there are worse forms of FM for each individual?
---What kind of pain do you have and to what degree?
---Is it every single day?
---Other than meds, what else works in easing it up?
Thanks for letting me post.
Ed
Meds or no meds, am I the only one who has terrible pain every day and all day? I've heard that some people don't have FM as bad as others and there are degrees of pain. All I know is that pain is an every day thing with me and the meds just keep me going.
---Is it possible that there are worse forms of FM for each individual?
---What kind of pain do you have and to what degree?
---Is it every single day?
---Other than meds, what else works in easing it up?
Thanks for letting me post.
Ed
Sponsor
Ajijaak
06-20-2004, 04:07 PM
Yes, you're right - FMS is a highly individual disease, and one of degree. For example, I've known fellow sufferers who are very high-functioning, and regularly run marathons. I've also known people who are confined to bed almost entirely. one friend was DX'd with it about four years ago (I think this was right after he husband, then 62 or so) was DX'd with dementia). For six months, she couldn't even get out of bed. Then, when that extended flare went away, she never had another. She still has to watch her stress level, etc., but she doesn't even think of herself as having FMS anymore because it no longer affects her daily routine
For myself, it's been getting progressively worse, particularly the pain, fatigue, and fibro fog. I'm 37, and a lot of days I feel and function as though I were 87. My pain is a constant - every single minute of every single day; it's only a question of degree. Some days, it's so bad that I can't get out of bed; others, I seem virtually normal.
My pain runs the gamut, but here are the major types: severe joint pain, a la rheumatoid arthritis; nerve pain, which becomes especially bad in hot weather (thank God I'm out of D.C.'s humidity now!), and which feels like every nerve in my body is being zapped with cattle prod; and muscle/connective tissue pain. Sometimes it's easier just to say that "every fiber of my being" hurts. :)
What helps:
Well, my meds, when I can afford them, get me through the day. Ultracet for pain, Skelaxin as a muscle relaxant, and Adderall for the fatigue/fog. A (very) occasional Bextra as an anti-inflammatory. Oh, and Paxil CR for depression, which I'd be taking anyway, fibro or no.
Sleep: Yeah, I know, what we all need and can't get, right? Although, since I've been on the Adderall, I'm finally hitting REM at night and getting some rest. That makes a HUGE difference with regard to pain. It doesn't diminish it in literal terms, but what it *does* do is put it in its proper place ( and perspective) in my brain, so that it only becomes a part of my day, not the overhwleming, always at the forefront, banging on my skull, I'm-heeerrrre-pay-attention-to-me thing that prevents me from seeing anything else.
Exercise: The only thing I've found that works for me is Curves for Women (sorry, Ed! of course, maybe if you put on a skirt . . . ). ;) It's 30-second cardio followed by 30 seconds on a no-weight, hydraulic exercise machine, followed by another 30-second cardio, followed by . . . you get the idea. You can work at entirely your own pace, and you can skip whatever hurts. I've been doing this since mid0January, and while I haven't lost any weight at it yet, I'm more flexible than I've been in years. I also occasionally do a modified form of Pilates here at home on a mat, when I'm feeling particularly motivated. What they say about exercise being most important is true, but impossible when you're in mid-flare. I highly recommend something like Curves for those of you who can do it, starting it when a flare is gone or at a lower ebb (and I've heard a rumor about a similar men's club, but don't know whether it's true), and/or Pilates at home - not to meet the Pilates standards for rigor, but jsut to do the exercises at your own rate and pace to increase flexiblity and reduce pain.
FWIW . . . .
A
For myself, it's been getting progressively worse, particularly the pain, fatigue, and fibro fog. I'm 37, and a lot of days I feel and function as though I were 87. My pain is a constant - every single minute of every single day; it's only a question of degree. Some days, it's so bad that I can't get out of bed; others, I seem virtually normal.
My pain runs the gamut, but here are the major types: severe joint pain, a la rheumatoid arthritis; nerve pain, which becomes especially bad in hot weather (thank God I'm out of D.C.'s humidity now!), and which feels like every nerve in my body is being zapped with cattle prod; and muscle/connective tissue pain. Sometimes it's easier just to say that "every fiber of my being" hurts. :)
What helps:
Well, my meds, when I can afford them, get me through the day. Ultracet for pain, Skelaxin as a muscle relaxant, and Adderall for the fatigue/fog. A (very) occasional Bextra as an anti-inflammatory. Oh, and Paxil CR for depression, which I'd be taking anyway, fibro or no.
Sleep: Yeah, I know, what we all need and can't get, right? Although, since I've been on the Adderall, I'm finally hitting REM at night and getting some rest. That makes a HUGE difference with regard to pain. It doesn't diminish it in literal terms, but what it *does* do is put it in its proper place ( and perspective) in my brain, so that it only becomes a part of my day, not the overhwleming, always at the forefront, banging on my skull, I'm-heeerrrre-pay-attention-to-me thing that prevents me from seeing anything else.
Exercise: The only thing I've found that works for me is Curves for Women (sorry, Ed! of course, maybe if you put on a skirt . . . ). ;) It's 30-second cardio followed by 30 seconds on a no-weight, hydraulic exercise machine, followed by another 30-second cardio, followed by . . . you get the idea. You can work at entirely your own pace, and you can skip whatever hurts. I've been doing this since mid0January, and while I haven't lost any weight at it yet, I'm more flexible than I've been in years. I also occasionally do a modified form of Pilates here at home on a mat, when I'm feeling particularly motivated. What they say about exercise being most important is true, but impossible when you're in mid-flare. I highly recommend something like Curves for those of you who can do it, starting it when a flare is gone or at a lower ebb (and I've heard a rumor about a similar men's club, but don't know whether it's true), and/or Pilates at home - not to meet the Pilates standards for rigor, but jsut to do the exercises at your own rate and pace to increase flexiblity and reduce pain.
FWIW . . . .
A
mollymadison
06-20-2004, 07:18 PM
Please read the thread that I wrote titled somethings like "It's working". :wave:
PapaRoux
06-20-2004, 07:43 PM
Thank you Ajijaak for making me feel at home on the message board.
It's kinda strange, you know--joining and trying to feel a part of the whole thing.
I'm where you are. It's an every day pain for me. The only excercise I do is by putting a tennis ball behind my back on the wall and rolling it around.
I also walk my dog on a regular basis to exercise the legs.
I have a book called 'The Wharton Book of Stretches' and some of them I can do without having a flare up the next day.
So--it is varying degrees of FM. I wasn't really sure about it. Thanks for the info.
Ed
And Molly--I'm going to read your post now.
It's kinda strange, you know--joining and trying to feel a part of the whole thing.
I'm where you are. It's an every day pain for me. The only excercise I do is by putting a tennis ball behind my back on the wall and rolling it around.
I also walk my dog on a regular basis to exercise the legs.
I have a book called 'The Wharton Book of Stretches' and some of them I can do without having a flare up the next day.
So--it is varying degrees of FM. I wasn't really sure about it. Thanks for the info.
Ed
And Molly--I'm going to read your post now.
aaronon
06-20-2004, 08:32 PM
I know that my pain is an every day occurence. I get out of bed and everything hurts, I work all day and everything hurts, I come home, still hurting. There is never an end to it. I'm 38 years old and nothing helps but willpower, as I take no meds for anything. I can't afford to, so I don't. Just absolute undying willpower to carry on like normal gets me through. Trust me, I hurt bad, sometimes all I want to do is curl up, give up, and be gone. But, I can't, as I have a family to take care of. I don't think there is an end to it, I think it has/will get worse as the years progress.
typingterror
06-20-2004, 09:23 PM
Normally Flexeril keeps my pain down to just agitation level rather than severe cramping which I experienced for so many years. However, this weekend I overdid my thing so am in melt down now and in spite of taking Flexeril I am in a world of hurt. I have a huge microwave heating pad that I will use. I do not think it gets rid of pain, but it distracts you so you can get some sleep and that is the only way I will be able to get rid of the pain tonight. I also use what I call my train of pain where I will line up bags of frozen vegetables and lay atop them for a few minutes and it will help. One never knows if heat or cold will help. I have been so desperate at times that I have used both at same time. Talk about like feeling you are having a malaria attack. (TT)
taurus3
06-21-2004, 07:26 AM
Hi There,
I was dxd at 24 and symptomatic at 22. I went for the next 11 years with some occasional bad flares but mostly the ability to live a normal life. Worked 40-50 hours per week in high stress jobs, went to night school, social life, sang in a band. Other than occasional anti-depressants when I was more fatigued, I took nothing for pain.
Two years ago I had several physical traumas all at once and it did something to push my fibro over the edge. After three months of arguing with my doctor that it was not "post-partum syndrome" I had to start taking flexeril and codeine. It has helped a lot but I still can't work.
Exercise helps me, especially yoga. Believe me when I started that I was doing the 90 year old woman version of yoga. But I just stuck with it and after about three months I could fully extend the stretches in the poses. Now I'm much more limber and when I hurt bad, have spasms or my various parts sieze up on me I can get some relief by doing yoga poses.
Hope that helps. It is so different for everyone. I haven't given up, I still believe that I can get better again. Maybe not working like I used to, but something better than where I'm at now.
Hang in there - Andy
I was dxd at 24 and symptomatic at 22. I went for the next 11 years with some occasional bad flares but mostly the ability to live a normal life. Worked 40-50 hours per week in high stress jobs, went to night school, social life, sang in a band. Other than occasional anti-depressants when I was more fatigued, I took nothing for pain.
Two years ago I had several physical traumas all at once and it did something to push my fibro over the edge. After three months of arguing with my doctor that it was not "post-partum syndrome" I had to start taking flexeril and codeine. It has helped a lot but I still can't work.
Exercise helps me, especially yoga. Believe me when I started that I was doing the 90 year old woman version of yoga. But I just stuck with it and after about three months I could fully extend the stretches in the poses. Now I'm much more limber and when I hurt bad, have spasms or my various parts sieze up on me I can get some relief by doing yoga poses.
Hope that helps. It is so different for everyone. I haven't given up, I still believe that I can get better again. Maybe not working like I used to, but something better than where I'm at now.
Hang in there - Andy
PapaRoux
06-21-2004, 08:38 AM
All of the suggestions help. Like everyone else I try to get through the day and live as normally as I can. Pain is such a daily part of life that I try to get through it the best I can. I'll flare up on some days and just have to deal with it, but know lots of people with this disease do.
Sometimes I crash, though. I just can't keep up and do anymore. Then--I sit and 'wait out' the pain. I'll check into the yoga positons. Like I mentioned before I have 'The Wharton Book of Stretches' and they seem pretty easy and not real painful.
I also approach some of these exercises like a 90 year old!!!
Ed
Sometimes I crash, though. I just can't keep up and do anymore. Then--I sit and 'wait out' the pain. I'll check into the yoga positons. Like I mentioned before I have 'The Wharton Book of Stretches' and they seem pretty easy and not real painful.
I also approach some of these exercises like a 90 year old!!!
Ed
tam821
06-24-2004, 10:38 PM
you are not alone. I have pain 24-7, If i have to go to the store, I take a percocet, If I have a doctors appt, I take a percocet, ......... I mostly use my pills for things like that. I try not to take percocet unless I need them to LIVE!!... I have good days and bad days. whats worse is I cant make ANY plans, because I dont know if I will sleep that nite, or will I have a major bad day.. I am not giving in to my pain or giving up, I am just re-adjusting my life.
which isnt easy at all. I keep a positve attitude always..it helps,...
but yes, I do have 24-7 pain, even the percocet just "dulls" the pain but its still there..
I got mostly pain, sleepless nites, headaches, are my biggest problems with fibro, besides memory loss..
Life is a lot slowwwwwwwwer for me thes days. but :) I could be worse, so I cant complain, I just have to adjust, like we all do..
I wish you peace of mind to all of you in pain like me..
tam
which isnt easy at all. I keep a positve attitude always..it helps,...
but yes, I do have 24-7 pain, even the percocet just "dulls" the pain but its still there..
I got mostly pain, sleepless nites, headaches, are my biggest problems with fibro, besides memory loss..
Life is a lot slowwwwwwwwer for me thes days. but :) I could be worse, so I cant complain, I just have to adjust, like we all do..
I wish you peace of mind to all of you in pain like me..
tam
PapaRoux
06-25-2004, 10:42 AM
Tam--
Our stories sound alike.
Today I'm in a major flare and have two commitments. With these two I'll catch holy heck if I don't show up. I'm in total pain.
So--I popped the meds and am just going to go through the motions. I'll do as little as possible and the one commitment I managed to volunteer to do the minimum. Tonight, I will go to a show and the conditions are that i crash in the hotel room afterwards.
I'm just going through the motions today and I don't even care. My wife pointed out to me last night how awful I look and I know it's from pushing too hard this week. She pretty much said that I'm not even walking right.
So--today I'll take it easy. I'll think of you,too Tam---as I grit my teeth with pain.
Ed
Our stories sound alike.
Today I'm in a major flare and have two commitments. With these two I'll catch holy heck if I don't show up. I'm in total pain.
So--I popped the meds and am just going to go through the motions. I'll do as little as possible and the one commitment I managed to volunteer to do the minimum. Tonight, I will go to a show and the conditions are that i crash in the hotel room afterwards.
I'm just going through the motions today and I don't even care. My wife pointed out to me last night how awful I look and I know it's from pushing too hard this week. She pretty much said that I'm not even walking right.
So--today I'll take it easy. I'll think of you,too Tam---as I grit my teeth with pain.
Ed
mollymadison
06-25-2004, 12:59 PM
Ed-
I hope the weekend gets better for you! Try to take it easy after your commitments. Hang in there! :bouncing:
I hope the weekend gets better for you! Try to take it easy after your commitments. Hang in there! :bouncing:
tam821
06-25-2004, 04:07 PM
ED,
I know how ya feel, I hope you make it thru your 2 events later. Keep a pain pill handy in case. I sure will think of you too.
Sure is a pain in the butt huh? gotta take a pain pill to get thru something.
then afterward your down for a day and half to recover...
hang in there sweetie,
TAMMY
I know how ya feel, I hope you make it thru your 2 events later. Keep a pain pill handy in case. I sure will think of you too.
Sure is a pain in the butt huh? gotta take a pain pill to get thru something.
then afterward your down for a day and half to recover...
hang in there sweetie,
TAMMY
Dimeit
06-25-2004, 10:33 PM
Hi--
Meds or no meds, am I the only one who has terrible pain every day and all day? I've heard that some people don't have FM as bad as others and there are degrees of pain. All I know is that pain is an every day thing with me and the meds just keep me going.
---Is it possible that there are worse forms of FM for each individual?
---What kind of pain do you have and to what degree?
---Is it every single day?
---Other than meds, what else works in easing it up?
Thanks for letting me post.
Ed
Meds or no meds, am I the only one who has terrible pain every day and all day? I've heard that some people don't have FM as bad as others and there are degrees of pain. All I know is that pain is an every day thing with me and the meds just keep me going.
---Is it possible that there are worse forms of FM for each individual?
---What kind of pain do you have and to what degree?
---Is it every single day?
---Other than meds, what else works in easing it up?
Thanks for letting me post.
Ed
Dimeit
06-25-2004, 10:39 PM
Magnesium will cut FMS pain in half,at least it did for me.Going to a dentist that knew what he was doing cured my FMS.The waste from the bacteria infection in my gums is what caused all the pain. Terry
PapaRoux
06-26-2004, 03:46 PM
Hi--
I made it through the two commitments and have the same pain as I had before I left. I tried to pace myself and although not better today, of course. I made it through and will take your advice to now give it a rest. I need it.
It will take a few days to get over it. I did manage to do it, though.
I don't regret it, but usually I back out of plans and was glad I could get through this. I'm gonna read some posts and hit the recliner til bedtime and then...off to sleep, hopefully.
Thanks for your encouragement. I'm so glad that you all are here.
Ed
I made it through the two commitments and have the same pain as I had before I left. I tried to pace myself and although not better today, of course. I made it through and will take your advice to now give it a rest. I need it.
It will take a few days to get over it. I did manage to do it, though.
I don't regret it, but usually I back out of plans and was glad I could get through this. I'm gonna read some posts and hit the recliner til bedtime and then...off to sleep, hopefully.
Thanks for your encouragement. I'm so glad that you all are here.
Ed
taurus3
06-26-2004, 08:52 PM
Hi Ed,
Glad you made it to some plans. I know how happy that always makes me. This week I managed some biggies too. My songwriting/singing partner and I went to open mic night for the first time. Thursday I took a beginning belly dancing class which is surprisingly the best most NON-PAINFUL exercise I've ever done. Friday I went to an outdoor movie up at a little fire station in the mountians with hubby and two year old. Now I'm pooped but I did everything I could to accomodate myself and pace myself. It worked.
The belly dancing moves seem to work the parts of me that don't hurt and leave alone those that do. I got my heart rate up and my bad leg and arm felt better the next day.
Rest up and have a good weekend. - Andy
Glad you made it to some plans. I know how happy that always makes me. This week I managed some biggies too. My songwriting/singing partner and I went to open mic night for the first time. Thursday I took a beginning belly dancing class which is surprisingly the best most NON-PAINFUL exercise I've ever done. Friday I went to an outdoor movie up at a little fire station in the mountians with hubby and two year old. Now I'm pooped but I did everything I could to accomodate myself and pace myself. It worked.
The belly dancing moves seem to work the parts of me that don't hurt and leave alone those that do. I got my heart rate up and my bad leg and arm felt better the next day.
Rest up and have a good weekend. - Andy
typingterror
06-27-2004, 12:30 AM
You go girl. I hope belly dancing does not have you belly up like a kaput goldfish tomorrow. I am in pain just thinking about belly dancing as I have arthritis in low back so I cannot even raise my leg high when I am doing my power in-house walking program or I would have difficulty walking the next day. For last two days I managed to walk around block which is about 1 1/2 miles. I figured pain is less when I get out into nature. I then sat on my balcony reading a book and took a nap. Now I am going to enjoy my daily luxury--a hot bubble bath. (TT)
PapaRoux
06-27-2004, 12:48 PM
Hi Andy--
You sound like you're managing well also. Belly dancing--now that's an exercise I've never heard of! I'm glad it's working.
I live near Phila******a and got an invitation today to go to New York with a friend. Well, this one I declined. I didn't want to push my luck. I got the two commitments done, but wasn't about to travel so far for a few hours with some people I'm aquainted with.
So---the body is resting today. I'm letting it heal. I ache all over and have pain where it doesn't ache!
Well--I get some rest during the week and that's a relief. My wife's mother was placed in a nursing home about 45 minutes away and that will change my life as far as what I do at night. That drive will have to be taken a few times a week at night....and I'm resting up for that.
Thanks to you and all for the support! Good luck with the belly dancing.
Ed
You sound like you're managing well also. Belly dancing--now that's an exercise I've never heard of! I'm glad it's working.
I live near Phila******a and got an invitation today to go to New York with a friend. Well, this one I declined. I didn't want to push my luck. I got the two commitments done, but wasn't about to travel so far for a few hours with some people I'm aquainted with.
So---the body is resting today. I'm letting it heal. I ache all over and have pain where it doesn't ache!
Well--I get some rest during the week and that's a relief. My wife's mother was placed in a nursing home about 45 minutes away and that will change my life as far as what I do at night. That drive will have to be taken a few times a week at night....and I'm resting up for that.
Thanks to you and all for the support! Good luck with the belly dancing.
Ed
pa235
06-27-2004, 11:00 PM
Hi ED,
There is very seldom a day that I do not have pain to some degree, but when the pain is tolerable seems like the IBS has to kick in.
My main pain area is lower ribs on the left, breast, and front shoulder pain, that spreads in under the arm, down the arm and down my shoulder blades. Get all over body pain but this is the most painful area for me. Somnetimes my rib pain goes from the lower ribs right up into the shoulder.
I have Fm, MPS,& IBS for twenty years, was diagnosed with costro a little over a year ago. Let me tell you that it does not get better.
I was just on the other board, I knew, I knew your name from somewhere, you are missed, there is post about you. Rarely posted there, because you had to watch what you said and seemed to a click, but still go there to read posts.
Linda
There is very seldom a day that I do not have pain to some degree, but when the pain is tolerable seems like the IBS has to kick in.
My main pain area is lower ribs on the left, breast, and front shoulder pain, that spreads in under the arm, down the arm and down my shoulder blades. Get all over body pain but this is the most painful area for me. Somnetimes my rib pain goes from the lower ribs right up into the shoulder.
I have Fm, MPS,& IBS for twenty years, was diagnosed with costro a little over a year ago. Let me tell you that it does not get better.
I was just on the other board, I knew, I knew your name from somewhere, you are missed, there is post about you. Rarely posted there, because you had to watch what you said and seemed to a click, but still go there to read posts.
Linda
pa235
06-27-2004, 11:06 PM
Hi ED,
There is very seldom a day that I do not have pain to some degree, but when the pain is tolerable seems like the IBS has to kick in.
My main pain area is lower ribs on the left, breast, and front shoulder pain, that spreads in under the arm, down the arm and down my shoulder blades. Get all over body pain but this is the most painful area for me. Somnetimes my rib pain goes from the lower ribs right up into the shoulder.
I have Fm, MPS,& IBS for twenty years, was diagnosed with costro a little over a year ago. Let me tell you that it does not get better.
I was just on the other board, I knew, I knew your name from somewhere, you are missed, there is post about you. Rarely posted there, because you had to watch what you said and seemed to a click, but still go there to read posts.
Linda
There is very seldom a day that I do not have pain to some degree, but when the pain is tolerable seems like the IBS has to kick in.
My main pain area is lower ribs on the left, breast, and front shoulder pain, that spreads in under the arm, down the arm and down my shoulder blades. Get all over body pain but this is the most painful area for me. Somnetimes my rib pain goes from the lower ribs right up into the shoulder.
I have Fm, MPS,& IBS for twenty years, was diagnosed with costro a little over a year ago. Let me tell you that it does not get better.
I was just on the other board, I knew, I knew your name from somewhere, you are missed, there is post about you. Rarely posted there, because you had to watch what you said and seemed to a click, but still go there to read posts.
Linda
pa235
06-27-2004, 11:11 PM
Hi ED,
There is very seldom a day that I do not have pain to some degree, but when the pain is tolerable seems like the IBS has to kick in.
My main pain area is lower ribs on the left, breast, and front shoulder pain, that spreads in under the arm, down the arm and down my shoulder blades. Get all over body pain but this is the most painful area for me. Somnetimes my rib pain goes from the lower ribs right up into the shoulder.
I have Fm, MPS,& IBS for twenty years, was diagnosed with costro a little over a year ago. Let me tell you that it does not get better.
I was just on the other board, I knew, I knew your name from somewhere, you are missed, there is post about you. Rarely posted there, because you had to watch what you said and seemed to a click, but still go there to read posts.
Linda
There is very seldom a day that I do not have pain to some degree, but when the pain is tolerable seems like the IBS has to kick in.
My main pain area is lower ribs on the left, breast, and front shoulder pain, that spreads in under the arm, down the arm and down my shoulder blades. Get all over body pain but this is the most painful area for me. Somnetimes my rib pain goes from the lower ribs right up into the shoulder.
I have Fm, MPS,& IBS for twenty years, was diagnosed with costro a little over a year ago. Let me tell you that it does not get better.
I was just on the other board, I knew, I knew your name from somewhere, you are missed, there is post about you. Rarely posted there, because you had to watch what you said and seemed to a click, but still go there to read posts.
Linda
pa235
06-27-2004, 11:12 PM
Hi ED,
There is very seldom a day that I do not have pain to some degree, but when the pain is tolerable seems like the IBS has to kick in.
My main pain area is lower ribs on the left, breast, and front shoulder pain, that spreads in under the arm, down the arm and down my shoulder blades. Get all over body pain but this is the most painful area for me. Somnetimes my rib pain goes from the lower ribs right up into the shoulder.
I have Fm, MPS,& IBS for twenty years, was diagnosed with costro a little over a year ago. Let me tell you that it does not get better.
I was just on the other board, I knew, I knew your name from somewhere, you are missed, there is post about you. Rarely posted there, because you had to watch what you said and seemed to a click, but still go there to read posts.
Linda
There is very seldom a day that I do not have pain to some degree, but when the pain is tolerable seems like the IBS has to kick in.
My main pain area is lower ribs on the left, breast, and front shoulder pain, that spreads in under the arm, down the arm and down my shoulder blades. Get all over body pain but this is the most painful area for me. Somnetimes my rib pain goes from the lower ribs right up into the shoulder.
I have Fm, MPS,& IBS for twenty years, was diagnosed with costro a little over a year ago. Let me tell you that it does not get better.
I was just on the other board, I knew, I knew your name from somewhere, you are missed, there is post about you. Rarely posted there, because you had to watch what you said and seemed to a click, but still go there to read posts.
Linda
PapaRoux
06-28-2004, 02:51 PM
I'm glad I'm not the only one who wakes up to spend the day in pain.
I've read some posts (not here) of people who claim to be in morbid pain and then tell you they worked 50 hours a week, went to a gym for an hour and a half, cooked dinner, went to Home Depot and then played with the kids until bedtime. Of course, the husband/wife is supportive.......
I don't buy it. When every piece of literature I've read states that having Fibromyalgia is like 'hurting all over' every day. Sure, some days are better than others, but I mean.....I feel awful when I hear of people who supposedly have the disease but yet might as well be Olympic gymnasts.
Ok--that's my only gripe for the day. I'm glad I got that off of my chest because it's been bothering me for a while. If it's true---then there are varying degrees of this illness and i'd like to know why some of us have it so bad and others seem to breeze right through the illness. And then I think why am i one of the ones who's disabled by the disease.
And--the only thing I can think of is that it might be because I have bad arthritis also, so that may be part of the reason.
Ed
I've read some posts (not here) of people who claim to be in morbid pain and then tell you they worked 50 hours a week, went to a gym for an hour and a half, cooked dinner, went to Home Depot and then played with the kids until bedtime. Of course, the husband/wife is supportive.......
I don't buy it. When every piece of literature I've read states that having Fibromyalgia is like 'hurting all over' every day. Sure, some days are better than others, but I mean.....I feel awful when I hear of people who supposedly have the disease but yet might as well be Olympic gymnasts.
Ok--that's my only gripe for the day. I'm glad I got that off of my chest because it's been bothering me for a while. If it's true---then there are varying degrees of this illness and i'd like to know why some of us have it so bad and others seem to breeze right through the illness. And then I think why am i one of the ones who's disabled by the disease.
And--the only thing I can think of is that it might be because I have bad arthritis also, so that may be part of the reason.
Ed
PapaRoux
07-01-2004, 12:00 PM
Today was one of those days when I woke up and thought 'I can't take this anymore'. Yet--I had a cup of coffee and knew I could and would.
It's just that the coping mechanisms I've been using for dealing with Lyme Disease and Fibromyalgia aren't working anymore.
So--I've decided to shake things up: turn everything upside down and backwards, if you know what I mean. I'll change the times I do everything, eat what I usually don't and don't eat what I usually do, change my entire sleeping pattern, my daily chores, who I talk to and who I don't and see if I can LIVE a little again.
I started feeling dead with these diseases. Yep--I've adapted and made changes in my life, but it just ain't workin' no more, so it's time to shake things up.
That's one of the worst ways to wake up: I don't know if I can go through this another day. Another day of pain.
Time to shake things up.
Thanks for listening,
ed
It's just that the coping mechanisms I've been using for dealing with Lyme Disease and Fibromyalgia aren't working anymore.
So--I've decided to shake things up: turn everything upside down and backwards, if you know what I mean. I'll change the times I do everything, eat what I usually don't and don't eat what I usually do, change my entire sleeping pattern, my daily chores, who I talk to and who I don't and see if I can LIVE a little again.
I started feeling dead with these diseases. Yep--I've adapted and made changes in my life, but it just ain't workin' no more, so it's time to shake things up.
That's one of the worst ways to wake up: I don't know if I can go through this another day. Another day of pain.
Time to shake things up.
Thanks for listening,
ed
snslilly
07-01-2004, 12:52 PM
I too have pain every day. I was DX about 2 1/2 years ago at the age of 28 but was symptomatic for about 8 years before. My doctor's kept trying to tell me that I had rheumatory arthritis like my father but only had very mild symptoms. It took 6 doctors and 2 years of searching before I was finally DX. Most days, it is a struggle to even get out of bed. Pain, fatigue, fog and depression effect almost everything I do. I had to give up my job 9 months ago due to pain and fatigue. I couldn't work without taking pain meds, I could barely stay awake due to the fatigue and the drowsiness of the meds, and the fog--well let's just say, I couldn't remember what I was doing if I got interrupted, what I had done or hadn't done, and some days, I couldn't even remember going to work until midday. I've pretty much given up driving because I became unsure of myself behind the wheel. Now I only drive to appointments when someone cannot take me. Just recently, I had to have someone start coming to help take care of my house. I have 3 children and a grandbaby living with me and it was just tooo much for me to keep up with the pain and fatigue. I can't even do my own shopping. I have the greatest amount of pain including neoropathy pain in my legs and standing or walking on most days feels like I'm being stung by thousands of bees.
These are the meds I take, percocets, neorontin, zanaflex, celebrex, zoloft, trazadone, wellbutrin, B-12 injections weekly, folic acid, and magnesium. Some days, I don't even feel like they're working. I do, however, feel like I could open my own drug store.
The only exercise I've found that I can do without creating too much more pain than I'm already having is about 15-30 minutes on a gazelle depending on my level of pain. The chiropractor that I go to said that it would be good because there is no impact like a treadmill or walking and would be good for the muscles. I have also found that bioelectric therapy and moist heat a couple times a week has helped with the pain in my back and shoulders. It definitely hasn't cured it but afterwards, I have dimished pain.
These are the meds I take, percocets, neorontin, zanaflex, celebrex, zoloft, trazadone, wellbutrin, B-12 injections weekly, folic acid, and magnesium. Some days, I don't even feel like they're working. I do, however, feel like I could open my own drug store.
The only exercise I've found that I can do without creating too much more pain than I'm already having is about 15-30 minutes on a gazelle depending on my level of pain. The chiropractor that I go to said that it would be good because there is no impact like a treadmill or walking and would be good for the muscles. I have also found that bioelectric therapy and moist heat a couple times a week has helped with the pain in my back and shoulders. It definitely hasn't cured it but afterwards, I have dimished pain.
aaronon
07-01-2004, 03:38 PM
PapaRoux,
I began having more symptoms 6 months after my oldest daughter was born. She just turned 15 in March. I do believe, due to some trauma in my life when I was young, that I have had Fibro, and all it's sisters and brothers for a long time. I am 38 years old now.
I began looking for someone, a doctor, that could tell me why I was hurting the way I was. This journey went on for years. I've had all kinds of tests, MRI's etc...every drug out there, counseling, etc. I don't take meds anymore..there's a few reasons why, which I won't get into here...but, I've been there, done that, got the suit.
I get up everyday in pain. The first step I take, feels like breaking bones in my feet. I'm sore, fatigued, wore out and in great pain. I for so long lived with it and had convinced myself that "out of sight, out of mind" worked for me. Well..I can no longer put it out of sight, and certainly can't keep this illness out of mind. I find myself craving a pain pill with none in sight. I haven't cleaned my house in a month or so. I don't feel like it. I barely drag myself to work everyday, there's no way I'm going to clean anything once I'm home. I barely have the energy to eat.
When I have a decent day, where the first step I take isn't sounding and feeling like breaking bones, I might put some things away, or sweep something, but then, I have to pay for that, because it never fails that some piece of me is not sore afterwards.
I do not know what makes me get out of bed anymore. I certainly don't want to, and I'm more angry than I am anything else. I'm angry that this illness has me completely in it's control and not the other way around. That means I'm slipping. That makes me angry. I'm angry that other people feel fine, never have pain, never have RLS....or IBS problems. (Not that I'd wish any of this on anyone) IF I have a decent day, where the pain is not there quite as much, and I feel ok, then the IBS kicks in. So, it's a never ending process. I'm tired of all of it. I want out of this body, and into another one. Does anyone want to trade? I appear to be angry all the time, in amongst all the other things that I live with. I don't like what this is doing to me, what it makes me feel. It's insane.
Gi
I began having more symptoms 6 months after my oldest daughter was born. She just turned 15 in March. I do believe, due to some trauma in my life when I was young, that I have had Fibro, and all it's sisters and brothers for a long time. I am 38 years old now.
I began looking for someone, a doctor, that could tell me why I was hurting the way I was. This journey went on for years. I've had all kinds of tests, MRI's etc...every drug out there, counseling, etc. I don't take meds anymore..there's a few reasons why, which I won't get into here...but, I've been there, done that, got the suit.
I get up everyday in pain. The first step I take, feels like breaking bones in my feet. I'm sore, fatigued, wore out and in great pain. I for so long lived with it and had convinced myself that "out of sight, out of mind" worked for me. Well..I can no longer put it out of sight, and certainly can't keep this illness out of mind. I find myself craving a pain pill with none in sight. I haven't cleaned my house in a month or so. I don't feel like it. I barely drag myself to work everyday, there's no way I'm going to clean anything once I'm home. I barely have the energy to eat.
When I have a decent day, where the first step I take isn't sounding and feeling like breaking bones, I might put some things away, or sweep something, but then, I have to pay for that, because it never fails that some piece of me is not sore afterwards.
I do not know what makes me get out of bed anymore. I certainly don't want to, and I'm more angry than I am anything else. I'm angry that this illness has me completely in it's control and not the other way around. That means I'm slipping. That makes me angry. I'm angry that other people feel fine, never have pain, never have RLS....or IBS problems. (Not that I'd wish any of this on anyone) IF I have a decent day, where the pain is not there quite as much, and I feel ok, then the IBS kicks in. So, it's a never ending process. I'm tired of all of it. I want out of this body, and into another one. Does anyone want to trade? I appear to be angry all the time, in amongst all the other things that I live with. I don't like what this is doing to me, what it makes me feel. It's insane.
Gi
PapaRoux
07-06-2004, 11:00 AM
Thanks for the responses---and Gi, I know how you feel. I've been trying to keep a positive attitude, but as soon as I know there's a flare-up coming or the potential for one, I freeze.
The flare-ups are coming more and more frequently and for the first time since I've had Fibromyalgia I stayed sleeping on the couch yesterday.
That isn't progress.
Unlike you, I do have meds and they just take the edge off so that i can at least function as normally as I can.
How you do it without meds is unbelievable--I give you alot of credit.
I can't imagine having this disease without some relief from meds.
Hang in there and those feelings you have are common with me, also.
Ed
The flare-ups are coming more and more frequently and for the first time since I've had Fibromyalgia I stayed sleeping on the couch yesterday.
That isn't progress.
Unlike you, I do have meds and they just take the edge off so that i can at least function as normally as I can.
How you do it without meds is unbelievable--I give you alot of credit.
I can't imagine having this disease without some relief from meds.
Hang in there and those feelings you have are common with me, also.
Ed
oholland
07-06-2004, 11:52 AM
I was just recently diagnosed with Fibro and I hurt all over, all of the time. I also have Chronic Fatigue, IBS and Arthritus and, like you, wonder how I manage to get up every day! I'm at a more advance age than you, being 57, but always thought of myself as "young" for my age. I was always able to control the pain with advil and tramadol until I bled out and had to have 5 units of blood. Now they give me vicodine, zoloft, trazodone, tylonol, and zantac for my stomach plus the usual asthma medications and yet nothing helps me sleep. I get amazed at those who can exercise. I do good to stand up without crumbling down from entense pain in my feet, shins, and knees (not to mention my hips and back!). I do plan to try water exercise soon.
Anyway, I was primarily writing to tell you that you're not alone. I can't work anymore and that's depressing because I loved my job and I'm beginning to feel like a recluse. I just don't know how much longer I can go on with this. It's been a year now that the docs have been trying to find out what's wrong with me. I take 2 Vicodine 750 and 2 tylonal arthritus just to move in the morning and supplement them with smaller doses during the day to keep me from being bedridden.
I guess misery likes company so here I am!
Good Luck!
Anyway, I was primarily writing to tell you that you're not alone. I can't work anymore and that's depressing because I loved my job and I'm beginning to feel like a recluse. I just don't know how much longer I can go on with this. It's been a year now that the docs have been trying to find out what's wrong with me. I take 2 Vicodine 750 and 2 tylonal arthritus just to move in the morning and supplement them with smaller doses during the day to keep me from being bedridden.
I guess misery likes company so here I am!
Good Luck!
PapaRoux
07-06-2004, 12:10 PM
Oholland--
Good luck to you also.
I take Vicoprofen 7.5/200 four times a day, four Ultram a day (I just called the doc to re-up it to eight a day), Sonata (for sleep) and Elavil (depression, sleep and pain).
I wouldn't be able to function without meds. I had tried it once and my whole body froze. I could barely move, walked funny and couldn't get comfortable no matter what I did.
You've got ten years on me and I think age does play a factor. I've often thought about getting the usual aches and pains someone up in years can get and I wonder how much worse that will make the Fibromyalgia.
I guess time will tell.
Feel better soon!!!!
Ed
Good luck to you also.
I take Vicoprofen 7.5/200 four times a day, four Ultram a day (I just called the doc to re-up it to eight a day), Sonata (for sleep) and Elavil (depression, sleep and pain).
I wouldn't be able to function without meds. I had tried it once and my whole body froze. I could barely move, walked funny and couldn't get comfortable no matter what I did.
You've got ten years on me and I think age does play a factor. I've often thought about getting the usual aches and pains someone up in years can get and I wonder how much worse that will make the Fibromyalgia.
I guess time will tell.
Feel better soon!!!!
Ed
PapaRoux
07-07-2004, 04:38 PM
Just an update: due to the flaring and the aching and exhaustion following it the doctor upped my Ultram to six a day. Hopefully I'll get a little more relief.
I intend to do nothing today except make something to eat.
Who would have known that having Lyme Disease would do this to me?
And I still have Lyme Disease.
Ed
I intend to do nothing today except make something to eat.
Who would have known that having Lyme Disease would do this to me?
And I still have Lyme Disease.
Ed
PapaRoux
07-09-2004, 05:20 PM
Daily Pain, Every Day--I still am so suprised that there is no cure for Fibromyalgia. It's permanent, contrary to what some might say.
So--we have to live our lives in pain. What other illnesses cause so much distress to so many parts of the body. Arthritis maybe? And we have so many side symptoms it's as if we have more than one disease. And many of us do.
Yes, Daily Pain, Every Day---how do you cope? That's really what I'd like to find out now---what coping mechanism do people use.
Thanks for any responses...maybe I'll make it a new topic since this thread is getting kind of long....but if you see it here, I'd appreciate if you could let me know.
Ed
So--we have to live our lives in pain. What other illnesses cause so much distress to so many parts of the body. Arthritis maybe? And we have so many side symptoms it's as if we have more than one disease. And many of us do.
Yes, Daily Pain, Every Day---how do you cope? That's really what I'd like to find out now---what coping mechanism do people use.
Thanks for any responses...maybe I'll make it a new topic since this thread is getting kind of long....but if you see it here, I'd appreciate if you could let me know.
Ed