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Old 06-20-2004, 11:10 AM   #1
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PapaRoux HB User
Daily Pain Every Day

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

 
Old 06-20-2004, 12:07 PM   #2
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Ajijaak HB User
Re: Daily Pain Every Day

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

 
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Old 06-20-2004, 03:18 PM   #3
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mollymadison HB User
Re: Daily Pain Every Day

Please read the thread that I wrote titled somethings like "It's working".

 
Old 06-20-2004, 03:43 PM   #4
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PapaRoux HB User
Re: Daily Pain Every Day

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.

 
Old 06-20-2004, 04:32 PM   #5
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aaronon HB User
Re: Daily Pain Every Day

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.

 
Old 06-20-2004, 05:23 PM   #6
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typingterror HB User
Re: Daily Pain Every Day

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)

 
Old 06-21-2004, 03:26 AM   #7
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taurus3 HB User
Re: Daily Pain Every Day

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

 
Old 06-21-2004, 04:38 AM   #8
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PapaRoux HB User
Re: Daily Pain Every Day

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

 
Old 06-24-2004, 06:38 PM   #9
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tam821 HB User
Re: Daily Pain Every Day

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

 
Old 06-25-2004, 06:42 AM   #10
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PapaRoux HB User
Re: Daily Pain Every Day

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

 
Old 06-25-2004, 08:59 AM   #11
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mollymadison HB User
Re: Daily Pain Every Day

Ed-
I hope the weekend gets better for you! Try to take it easy after your commitments. Hang in there!

 
Old 06-25-2004, 12:07 PM   #12
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tam821 HB User
Wink Re: Daily Pain Every Day

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

 
Old 06-25-2004, 06:33 PM   #13
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Dimeit HB User
Re: Daily Pain Every Day

Quote:
Originally Posted by PapaRoux
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

 
Old 06-25-2004, 06:39 PM   #14
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Dimeit HB User
Re: Daily Pain Every Day

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

 
Old 06-26-2004, 11:46 AM   #15
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PapaRoux HB User
Re: Daily Pain Every Day

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

 
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