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Old 09-01-2005, 03:56 PM   #1
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Oh how humbling!!

May I tell you just how humble I feel today? I will start by telling you just how good I have felt of late, some may remember that I went on prednisone a couple months ago for my lupus joint pain. The prednisone also seemed to help my fatigue and some mucle pain. I was not tiptop, but soooooo much better!

I felt so good that I started to get things done that had been piling up and making plans for all the other unfinished projects I have. I got caught up on cleaning and shopping and phone calling and you name it I was all over it.

That is not to say I didn't run out of gas every now and then and I always tried to keep the same hours during the day, no late night parties, I'm an early to bed kind of gal. I even got a little cocky with caffeine and sugar once in a while and still felt good.

BOOM.....FIBRO SAID DON'T FORGET ABOUT ME!!!!!! I woke up yesterday morning just a little tired and decided I needed a whole day of rest, not just a slower day and doing light things. By afternoon I was aching everywhere and by 8pm my head was in my hands as I sat in my living room chair and tried to watch the ballgame with my hubby.

My, my how humbling it is when fibro reminds us we cannot do what we once did and we have to give it the respect it deserves. I knew better, but it felt good to be able to accomplish so many things that had been put aside for so long. So now I will share my body with fibro and let it have it's space, but I will also not let it control my existance and define who I am.

I am grateful for the time I had, because I was able to accomplish what I needed to set other things in motion that should help me in the long run. I have a lady coming to give me an estimate on housekeeping, the repair service has been here and fixed all the little things, that needed someone with the right knowledge and my daughter adores shopping even for groceries, so I will be giving her the job anytime she wants it. I have always hated grocery shopping.

Today was a little better but the old fibro fatigue and aching and pain is still lingering. I will take it one day at a time and see how things go, maybe I can still pull the sewing machine out and finish those curtains, who knows!! I guess only fibro and it's not telling......

Glojer

 
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Old 09-01-2005, 04:36 PM   #2
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Re: Oh how humbling!!

Hi Glojer,

I sometimes, only sometimes will go into a period of very low pain level, I am so thankful for those times and seem to get these spurts of energy, go like a fool and really pay for it. I do not take meds, am so sensitive to them. But at least we accomplish something on the good days.

hugs, Linda
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Old 09-01-2005, 05:58 PM   #3
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Re: Oh how humbling!!

Hi,

I am moved by your post; your attitude towards feeling now worse is so good and inspiring to me. I was on predinisone for a short time and felt oh, so good, just wonderful, and I did the same thing.
I'm struggling with this fatigue daily. There are so many things I want to do, and I can only work a short while before exhaustion sets in. And I am grateful for what I can do, too, but get frustrated and resentful sometimes. And I am having to take an antibiotic which adds to the fatigue and fog and depression.
So reading your words of patience and maturity really helped me, thank you.
And I am glad you had the good time you did.

Peace,

Seaturtle

 
Old 09-01-2005, 09:26 PM   #4
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Re: Oh how humbling!!

there is much peace in laying in bed wracked with pain and knowing you actually did something to bring the pain on. you lie there thinking of all that you accomplished and the pain seems to take the back seat to the feeling of satisfaction.
bless the days of power and energy. i cleaned my house today. no, golden i did not do the yuckie barf toilet. makes my skin crawl just to mention it.
sweet dreams to all,
peace,
bluelakelady

 
Old 09-02-2005, 02:18 AM   #5
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Re: Oh how humbling!!

Oh yes. This sounds so familiar. I have had these good times and feel I can do almost anything. Yes tiredness does slow me down, but the feeling of achievement at completing tasks is so so good. When I am in one of these good times I am great at convincing myself that I have beaten fibro. This time I am going to keep improving. Then, like you said, wake up one morning and it is all back almost laughing at us and sneering " thought I was gone, fooled you again".
It is your positive attitude that will keep you going. When I am low, I do not see logic. If I could take a leaf out of your book and look on the positive side and relish the fact that there are sometimes when I can do things.
Thanks for the post. It is important for us to remember how it feels to crash again.

Brend

 
Old 09-02-2005, 06:38 AM   #6
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Re: Oh how humbling!!

Good morning,
I'm new to posting here but read the post regarding the Prednisone treatment for the Lupus joint pain with interest. I have recently been diagnosed with Fibro and as I look back I have probably had it for years but always had something ligit to blame it on. My spine and neck are in terrible shape and I have arthritis in my ankle from a very bad break years ago so I never went to my regular doc for the aches and pains. When the full body attack hit in July I went to the doc because of the terrible pain and stiffness in my leg muscles and groin and and the same in my arms, hands, shoulders, and neck. I could barely walk and couldn't get out of bed without help. Using my arms caused excrusiating pain. The doctor had her nurse draw a ton of blood and ran many tests for autoimmune diseases, which came back normal/negative. I was given scripts for pain medication Norco 5 because Vicodin makes me so sick, Valium and Elavil to help me sleep as I couldn't sleep due to the pain. The doctor told me to come back in a week for results. The pain was worse by then. I was then given a shot, 80 mg, of Prednisone with 4 mg pills to take for a week. After five days I had tremendous relief. I went back to the doctor for my next week's appt. and by then the pain had started to creep back. I was told that I might have Polymyalgia Rhuematica because Prednisone is not a usual course of action for Fibro. My sed rate was normal so the doctor ruled P.R. out. Has anyone here used Prednisone to get pain relief? I am now taking Elavil 50 mg. still not sleeping well, Flexeril 10 mg. when needed and I have the stronger Norco 7 for bad pain. The pain goes from arms to legs and groin and you never know how your going to feel on any given day. I try and keep busy and get things done when I have a good day and haven't worked in three weeks due to the severe pain and exhaustion. I was semi retired when this hit and didn't plan to totally retire until next winter. I would love to know if anyone has heard or used Prednisone for Fibro pain relief. I hate to go on maintenance doses because of the side effects of this medication. I see a Rhuematologist in Oct. for further testing.

 
Old 09-02-2005, 07:01 AM   #7
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Re: Oh how humbling!!

welcome lookin! steroids for pain management, in my opinion, should be used as a last resort or short term only. there are other meds to consider first. your new rheumy will help you there.
i took prednisone once a few years back for an allergic reaction to another med. while it did help with pain, and that nasty rash did clear up, i was altered within by the steroid in such a way that i was not liking me very much. i became aggressive and sharp tounged, impatient and intolerant. not my style at all. i also gained 20 lbs in 20 days. not worth it for me. maybe later in life when there are fewer choices and more symptoms.
hang in there my new friend. it does get doable as time goes on. you learn to live within the body you have. peace comes and fear evaporates as you learn the ways of you body.
peace,
bluelakelady

 
Old 09-02-2005, 09:55 AM   #8
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Re: Oh how humbling!!

Thanks all for your comments, I do appreciate everyone of them. I know we all go through basically the same thing even though our symptoms may vary.

Welcome Lookin4, the prednisone I take (4mg) was prescribed by my rhuemie because of joint pain and inflammation. I tried the standard drugs such as plaquenil and methotrexate and had problems with both. I did not take anything for about 6wks and the joint pain and inflammation reared its ugly head. I want to make clear I was not given prednisone for my fibro, but it seemed to help with feeling better overall. Like blue said, she could not take prednisone but I actually got a little giddy and high after taking it probably because the pain subsided, and I have lost a couple pounds. Probably because I am able to move and exercise and have the energy to be more aware of what and how much I am shoving in my mouth.

This leads me to talk about something else.....I almost hesitate to bring it up because I don't necessarily advocate self medicating. BUT.....I have found a connection if you will or a way I can help myself come up from the bottom of a flare. I am on thyroid meds (112mcg synthroid) and I have tried this more than once and it has seemed to work every time. When I start a flare if it is an especially bad one such as this time, I take extra synthroid. I take a pill at night before going to bed and then the normal pill in the morning as usual. For anyone who has taken thyroid meds, you know you always save the dosages you no longer take ( 50 thru whatever you have ended up with, for me that is 112) in case the doc lowers you back down you won't have wasted your money. This is a standard practice even the pharmacy tells you to do it. I take one of the lower dose synthroid pills at night depending on how bad I feel and the regular in the morning. This time I did that two nights and I have to say it has really HELPED! This leads me to wonder how big a connection there is between thyroid problems and fibro.

Taking thyroid meds the last two years, I will say did not help my fibro or lupus it just helped me overall. But I truely wonder why when I hit that certain point the extra thyroid med works. You have to know your body and I know mine and I know when to take the extra boost, I usually only do it one night, but this time I tried two. I have tried this about 3 different times, certainly not a scientific test by any means but I am curious why it works and if anyone else had tried this or has other things they do.

Glojer

Last edited by Glojer; 09-02-2005 at 12:34 PM.

 
Old 09-02-2005, 12:58 PM   #9
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Re: Oh how humbling!!

This may sound wierd or stupid, but I posted a response about taking prednisone and fibro and thyroid meds. It is on my screen, but it doesn't show up as a post. Did it go through, has anyone else seen it? Don't know what I might have done this has never happened before. If I know it didn't go through I will try to repost. All the other responses I did at the same time look as though they have gone through.

 
Old 09-03-2005, 06:07 AM   #10
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Re: Oh how humbling!!

Hiya Glojer,

Yes, it is here I have just read it.

Take care my friend.

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Old 09-03-2005, 08:47 AM   #11
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Re: Oh how humbling!!

Thanks golden, I'm not a computer wizard and when something seems weird I don't know what to do. So I figured I'd just ask my friends and they would tell me the truth, either I messed up or it worked.

 
Old 11-16-2005, 10:44 AM   #12
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Re: Oh how humbling!!

Hi there: That was very well put. Oh how I hate this damn disease. I wonder how many people have the same is it in the thousands or millions? Good luck, take care

 
Old 11-16-2005, 12:29 PM   #13
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Re: Oh how humbling!!

I'm so glad I read your post. Now I understand why when I had a day of feeling just about normal and decided to use that energy for constructive things, I ended up the next feeling like a truck ran over me and all I wanted to do is sleep! Thank You.

 
Old 11-16-2005, 01:20 PM   #14
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Re: Oh how humbling!!

I cannot believe how my life is changing since I know I have fibro and that I am not imagining things in my head when I say I am in pain, I am tired.

I must rest alot more now and when I do I take time to meditate, look at my life and see where I went wrong with my body.

I feel like I am starting my life all over again. I always enjoyed partying but no more. I love quiteness, peace, classical music and if I can, walk my dog. I used to walk with him two miles a day but no more. I can hardly walk down eight steps without being in pain. Poor puppy. I don't understand when they say that people who have fibro must exercise. Maybe one day I will be able, but now my body is in such pain there is no way I could go out and walk for 20 minutes with puppy.

I got a yoga tape. I want to start doing it everyday. Have some of you tried yogo to release your pain?

Last edited by Beauregard; 11-16-2005 at 01:21 PM.

 
Old 11-16-2005, 02:20 PM   #15
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Re: Oh how humbling!!

Hey, I have been thinking of taking yoga too, but I don't know much about it. I need something for light exercise and a way to release. I have never been much of a hot bath with candles type of person, I was always on the go so now that I am being forced to change my life I do need something. I would love to hear from somebody who knows about yoga too.

 
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