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Old 04-08-2008, 01:37 PM   #1
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Is it Normal to feel like Crap all the Time?

I'm sitting here, unemployed, getting plenty of sleep. I'm just wondering if it's normal to feel lousy all the time, every day? The worst is the fatigue. I'm taking Amantadine for it but it doesn't seem to be working as well as it was in the beginning. I've had problems with my legs for the past two weeks or so, and a very bad pain in my back that went away with IV steroids is back now.

Emotionally I feel pretty good--no depression or anxiety, just a little frustration. I just feel very tired and weak and the pain doesn't help. If I have RRMS, when will the "remit" part come? I know that some symptoms may stay forever, but will I feel like myself again, ever?

I don't have an appt with my MS doc until July, when we'll do a full work up to see how the Avonex is doing. I'm thinking about calling though to get something different for the fatigue. It's becoming very debillitating. I can walk, just a little unsteady, and I use my cane when I need to. But nothing is helping the fatigue. I've had a pot of coffee today and I'm struggling to keep my eyes open.

On another note, I was at another place, and I have to say that this board is wonderful. Someone new may be joining us soon.
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April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
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Old 04-08-2008, 01:46 PM   #2
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Re: Is it Normal to feel like Crap all the Time?

April, have you ever had a sleep study done? A fair amount of those with MS have sleep disorders.

Unfortunately, sometimes the DMDs can make you feel lousy. I have read many times where the patient has stopped their DMD and felt better than they had in a long time.

Then of course - yes, this disease and some of the symptoms can make us feel crappy.

You could make an appointment with your PCP to make sure there isn't some other reason (sleep disorder, ect) for how your feeling. Not everything is MS related.
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Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression

 
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Old 04-08-2008, 01:52 PM   #3
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Re: Is it Normal to feel like Crap all the Time?

I've never had a sleep study. While at my job that I just quit, I had terrible problems sleeping, but since I quit my only problem is falling asleep. Before I could only stay asleep for a few hours at a time. I figured it was anxiety.

I am seeing my PCP in two weeks, and I'll ask him about it. I wouldn't be surprised if it was Avonex though. I'm five months in, and I still get very sick from it. I take the shot on Friday night and I'm sick all day Saturday and I feel hungover on Sunday. Truth be told, I'm tired of it. I was very tempted this past Friday to just skip it but my husband wouldn't let me.
__________________
April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 04-08-2008, 01:54 PM   #4
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Re: Is it Normal to feel like Crap all the Time?

Hey April, Snoopy is right that it could be a sleep disorder or another underlying cause, but Ill also answer your question about will you ever feel better again? It took me 6 months on Rebif before BOOM I woke up - and felt like ME again! WHat a great feeling....it was like all the sudden the light got turned on. My energy level came back- I felt alot more comfortable in my own skin- no longer SO aware of every ache and pain all the time....

Plus, I want to remind you, Ms. unemployed...its been what- a day? A week? and lets NOT forget the amount of stress you were under the past month making this decision. Your body has been thru the ringer- your mind has also been thru quite a bit...it wouldnt surprise me at all if you relapsed, and in order to avoid that you need to do what you do best. Stay focused- stay horizontal, even if you cant sleep- stay off your feet and give your body a break- and eat right. I know you pretty well and I absoutely know that this will pass and you will be feeling better before long...also, the weather is changing, this is a relapse zone for many of us...try not to over-do the feeling of spring in the air too soon. Give your body a chance to acclimate to the slightly warmer weather. Before you know it - summer will be here...and while we are all slaving away in our offices (or in my case mobile office- my company car) youll be laying by a pool somwhere writing the great Novel im waiting to read!

Just try to believe me when I tell you that this feeling doesnt last forever- and youve had some good days in recent months. Its R/R for sure..however when overload kicks in, as it usually does- this is when things feel the worse to us. It will pass. I promise. Hang in there...keep venting about it, you know that always works!
hugs
Nikki
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RRMS- dx 05

 
Old 04-08-2008, 02:45 PM   #5
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Re: Is it Normal to feel like Crap all the Time?

Sleep is an odd thing. Before my dx I was sleeping 12-14 hour nights, and I felt awful and fatigued for the day. After my dx and steroids began, I went down to 6 hours a night. Granted I am not in your situation April where you were working and experiencing the stress of making the decision, but I now sleep 6 hours, and I have energy waking up and through the day.

I think when I return to work, I may be able to sleep longer nights. Right now being at home, I have all this unspent energy (and yes, getting better I got really restless and still am! I find every reason to go out of the house for a short walk).

I take tryptophan to sleep (1 500mg capsule a night an hour before bed). Before my 'recovery' I literally was passing out if I stayed up beyond 30 minutes of taking one. I still take them nightly, and I can remain awake for 2+ hours after taking one without feeling tired at all. I do try to sleep at the same time each night, and wake at the same hour each day (I find 8 am works best for me).

I guess as long as I'm being consistent with sleep times, and I have energy waking and throughout the day, I'm doing ok no matter how many hours of sleep my body wants.

 
Old 04-08-2008, 03:22 PM   #6
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Re: Is it Normal to feel like Crap all the Time?

This is my second day without a job. I'm trying to get some rest while I'm looking for the next one.

I sincerely hope I feel better soon. People keep telling me that they "know someone with MS" who feels great. I hope that happens for me soon!
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April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 04-08-2008, 04:23 PM   #7
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Re: Is it Normal to feel like Crap all the Time?

Quote:
Originally Posted by april1848 View Post
This is my second day without a job. I'm trying to get some rest while I'm looking for the next one.

I sincerely hope I feel better soon. People keep telling me that they "know someone with MS" who feels great. I hope that happens for me soon!
I hope you do feel better soon girl! Hugs

 
Old 04-08-2008, 05:07 PM   #8
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Re: Is it Normal to feel like Crap all the Time?

April- stay strong. Im going to remind you of this post in a month when you are celebrating how much easier life is without having to worry about your job..!
It really will get better....maybe only for awhile, because thats how this disease is..good one day, lousy the next. But it will continue to get better than it is today. Promise. Youve had these cycles before- your just not "used" to them yet...they become easier to recognize as times goes on- and even easier to ignore!
Try to rest buddy...catch up on emails, tv, books or even having coffee with a friend. Take advantage of the downtime by enjoying life the way you used to...put MS out of your mind for awhile if you can...just try to be April- not MS April.
get it??
Nikki
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Old 04-08-2008, 05:55 PM   #9
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Re: Is it Normal to feel like Crap all the Time?

Thank you Nikki and Nenu. I want to use this time, and hopefully there won't be a lot, to do what I want to do. The garden is tops on my list, reading, writing, and all the millions of things I've never had time to do before. Today I've gotten through one Kurt Vonnegut book and part of a trashy historical fiction book. I'm just very tired and I don't want to sleep during the day! This time is so wonderful and precious to me.

Tomorrow I'll get to see my grandma who I haven't seen in to long. I'm going to find out what supplements I should be taking and other things from her. The next day I'll be back at my job to train someone. Besides that I'm just trying to play housewife, wish I'm afraid I'm not very good at!
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April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 04-08-2008, 06:02 PM   #10
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Re: Is it Normal to feel like Crap all the Time?

April, I have to say it hurts my heart to read your post because I am with you! I just came through a relapse that started the day after Thanksgiving and ended about a week ago.

Nikki is right.. it is as if you wake up and "oh, here I am"! I had almost forgotten what this felt like! I have wanted to just run around hollerin'!

It will get better. It does pass and you will celebrate the "new normal" times. This was the first relapse I have had in some time. I have learned the "signs" of when this may come. Sometimes it lasts a week, sometimes a month. This past one was a while but I took a class on line, caught up on some movies I had wanted to watch and slept whenever I wanted. I found that using those special strips for people that snore seemed to help me get better quality of sleep due to the increased exchange of oxygen. It was suggested by my PCP. I am sure my husband appreciated it as well!!!lol

You have been through a big change. Give yourself some time.

Lisa

 
Old 04-08-2008, 06:12 PM   #11
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Re: Is it Normal to feel like Crap all the Time?

Thank you Lisa! I don't mean to sound pathetic. I guess I'm ticked off that I can do whatever I want (finally) and I don't have the energy to do it. I think feeling like crap was easier when I was miserable at work!

I'm also trying to give myself permission for not being at a job right now, for not being productive, so I'm trying to do that at home. I really do need a little break.

I hear you about the snore strips. My new thing is a bright green Frankenstein's monster looking face mask. It scares the heck out of my husband. But my skin is so firm, I don't care!

It's those little things that make me happy.
__________________
April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 04-08-2008, 06:55 PM   #12
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Re: Is it Normal to feel like Crap all the Time?

Quote:
Originally Posted by april1848 View Post
My new thing is a bright green Frankenstein's monster looking face mask. It scares the heck out of my husband. But my skin is so firm, I don't care!
LOL I can just picture this! Too funny!

 
Old 04-08-2008, 06:56 PM   #13
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Re: Is it Normal to feel like Crap all the Time?

You don't sound pathetic BY ANY STRETCH of the imagination. You sound like the rest of us! I worked out in the flower beds this morning and part of the afternoon. I sometimes wind up doing it with tears running down my face because I realize I am reaching the point I have to stop. I love to have my hands in the dirt and used to be able to do it all day 5 days a week.

Now, I can usually get about 4-5 hours in throughout the day but only about 2-3 days a week. THEN,, I remember that it is a blessing to be able to do it at all. Many people can't even do what we can do.

It is truly in the "little things" where we can find the most joy!

 
Old 04-09-2008, 08:31 AM   #14
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Re: Is it Normal to feel like Crap all the Time?

I know what you mean. I'm looking at my poor garden and wondering how I'll ever get it done.

I do a lot of container gardening too, and I keep all my pots on my patio. There are lots of little critters here, plus deer, that like to eat my plants. So I grow vegetables in pots and keep them on my porch. There's a cat that lives under my porch who guards against squirrels, thank goodness.

I used to work at a nursery. I'm the type of person who gets obsessed and has to learn everything about something that I like, and gardening became another obsession for me. I used to help people design their gardens. My garden right now consists of a couple crocuses trying to make their way up thru dead leaves, dead annuals from last year, and knocked-over statues. Yikes!
__________________
April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 04-10-2008, 05:17 AM   #15
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Re: Is it Normal to feel like Crap all the Time?

hi ya all.... I'm right there with you ladies . I also worked in a garden shop. Loved my job, soo relaxing.... My godness how i loved it. I had to stop work when i was dx, i wasnt coping being on my feet..

I have a small garden bed at home now i can just manage. , i just admire the neighbours garden, i'm happy with the small pots too.
We certainly learn to accept the things we can do rather than the things we can't anymore.. It sucks but its reality huh ???

 
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