True hell waking up in the morning

[vickythecat]

Hi,

This is by far my biggest problem of the day. In fact, the biggest problem of my life. Waking up...and the 2-3 hours afterwards.

I know waking up feeling not rested, like you've not slept at all is a common symptom of fibro, but with me it seems to be quite extreme. It is really life debilitating.

I will lay in bed in the morning, 6-7-8-9-10 am, feeling like a truck has run me over. The pain is one thing, my whole body aches, it feels 'rusty', and I feel so so so exhausted, like I was woken up just as I was falling asleep, or like I have not slept at all. But then there is also the mental aspect. Everything is dark, everything seems impossible (eating, taking a shower, my daily chores etc), nothing and I mean nothing motivates me to get up. I don't want to start the day, especially feeling the way I do.

It has gotten so bad that I don't even want to sleep anymore, because I know waking up will be hell. But then I feel so exhausted at the end of the day, that all I can think is sleep. But it never ever helps. The same happens with the naps I sometimes take during the day - same feeling, this weight on top of me, feeling exhausted when waking up.

No matter what I try (and I have tried everything, all those tips and advice you read all over the place), I feel more exhausted waking up than when I went to bed feeling tired!

By 1pm, I start to feel a little better and then my day really starts.

Am I the only one? Is this an aspect of fibro that happens to be very extreme in my life, or is it something else?

 

[Tipnatee N]

That feeling happen to me since day one with fibro. I think most people here are waking up feeling exhausted.

I never feel rested EVER . I've already forgot how good sleep actually feels like completely. It never existed as far as I know. Very heavy fatigue feeling as soon as I open my eyes. If that didn't happen then just wait a few minute then here it's come.. where is my rest I wonder.

My head pounding like I have a very bad hang over without any drinking the day or night before. Sometime feeling like a slow morning sickness. The world is spinning half way or side way. My eyes are so tired like I've been working all night on what I have no idea. My body felt I just came back from a war zone. Sometime waking to extreme pains all over or knots and pains. My body getting half paralyzed trying to push my self up to go to bathroom, nope I couldn't cause my neck felt like tons of weight on it I can't lift it off the pillow. Sometime I felt tightness in my chest it hard to breath I'm getting even more dizzy I push my self up like a zombie mode raise from the dead do to half way paralysis , it literally felt and looks just like an old black and white film of a zombie raise from the coffin. Stiff everywhere. Standing on my feet felt like almost an imposible task. But I have to. Then taking a step , wow my back shot down and I landed my bum and body back on the mattress.

Why does this have to be so hard? I hated it when I think that most people must have looking at me like I'm lazy and making excuse not to get up and try to sleep all day like a lazy bum that I am. Sometime crying out of fustration from unable to get up makng it even more exhausting. Looking at the ceiling thinking that what else I could do to getting my self up is causing even more depression. I've try slowly sliding my body out of bed like a snail and slowly landing my self sitting on the cold hardwood floor hopping that will wake me up better. Sometimes it help sometime I just stuck there for anothet hour but still less than kept staying in bed anyway. Cold treatment seem to works for me as far as waking up and pushing me out of the bed. I always have the instant ice packs near by just in case. I guess it gave me some adrenaline boost to move.

 

[diamond]

Me 2 nowadays....i used to be better in the early years of this illness...now its like you explain vicky. For me i don't even improve and my whole days stays pretty much the same. .... i might be back in bed after just a couple of hours up.

I don't like saying this even on this safe forum from shame but so many days im barely up at all...i just hurt too much and am too weak and just feel iller the longer i try and stay even sat up with my lap top ...i know that's hard to understand for some of the folk on the forum.

The impact on a persons mental heath is as devastating as the pain ...the two for me now are so interlinked i just feel like a very unwell person.

 

[Brenda K]

Vickythecat Oh I hear ya! It's such a brutal cycle that you just want to end it somehow. I am the same. But I usually lay awake almost all night as I can never get comfortable enough to drift off. I have to change positions a lot and use many pillows to prop my body up so I don't fall asleep and end up all twisted up. So this keeps me up. I am lucky if I drift for more than an hour or two a nite usually (by some miracle right now I am getting more sleep) when I do wake up I feel ok for the first minute or two.... but then as I start to move the burning in my muscles starts again and the anxiety clicks on and within a few minutes I can feel A panic attack coming on. Which in turn makes my body ache even more. Such a vicious cycle! How do you ever get better when it's like that right?
I wish I had words of wisdom for you....I really don't as I struggle with this daily as well..... so I guess take a little comfort in the fact that you are certainly not alone!
I usually find my best time is midday but lately I seem to suffer all day and then after supper I have a couple of hours where I feel somewhat alive. It's exhausting being so exhausted.

Now here is a question.... does anyone else get like a sick vibrating feeling that goes through your whole body? I am not even sure if I know how to explain it. It's almost like an adrenaline rush/vibrating feeling that leaves me feeling shaky and nauseous. Lately it has been almost all the time. The vibrating is almost like I have a Tens machine on my body on low somewhere. Except if feel like it's coming right from my core. It makes me feel so ill. This is a newer symptom for me but I haven't found anything online to suggest that it is actually a symptom of FM.

 

[vickythecat]

Now here is a question.... does anyone else get like a sick vibrating feeling that goes through your whole body? I am not even sure if I know how to explain it. It's almost like an adrenaline rush/vibrating feeling that leaves me feeling shaky and nauseous. Lately it has been almost all the time. The vibrating is almost like I have a Tens machine on my body on low somewhere. Except if feel like it's coming right from my core. It makes me feel so ill. This is a newer symptom for me but I haven't found anything online to suggest that it is actually a symptom of FM.

I don't know whether they are the same, but I have been getting these shaky moments, sometimes hours here and there as well. It exactly feels like a huge TENS is hooked up to my body, it feels sickening. I get this weird sensation in my chest as well. I have no idea what it is, or even how to really explain it.

So again, I am not sure whether this is 'normal' with fibro, or it is something else. The shakiness can be really bad, I can't even type or hold a cup/glass in my hand. I will now be writing the times they happen and see whether there is a pattern (and maybe a reason)

Back to sleeping; I was tossing and turning for years, fighting with the 5 pillows I had on my bed (different shapes/thickness etc), it was a true nightmare. I've had failed surgeries on my neck, my back is filled with areas of bursitis/tendinitis, then my right shoulder got badly injured (and my only semi-comfortable position was the fetal position on my right side!) Then I also have my never stopping mind - I have to run through all the trauma's of my life, plus every day social events over and over again.

It got so bad that now I take a muscle relaxant 2 hours before falling asleep. I make sure I distract my brain with a good book (some nights I can only read simple kid's stories because they are all my brain can handle) then by 1 am, I fall asleep like a brick (usually). This goes on till 4am, then it is more or less tossing and turning rest of the night/morning. I hate being dependent on meds to sleep, but it is what it is....

 

[Tipnatee N]

Branda K , are you refering to the symptom call ' internal tremor' ?

like a deep heavy buzzing nerve coming from my spine . I often say that I feel like a giant viberator. I get that every single day. It's annoying and it's not external enough to see outside the body but it kept me awake every single night. Especially when I really try to go to sleep, it's buzz so strong I can hear it in my inner ear like a low frequent humming.

 

[vickythecat]

I don't like saying this even on this safe forum from shame but so many days im barely up at all...i just hurt too much and am too weak and just feel iller the longer i try and stay even sat up with my lap top ...i know that's hard to understand for some of the folk on the forum.

You should NOT feel shame whatsoever. You are going through such a severe case of fibro that it is only understandable that on most days your body and mind cannot even handle the 'simplest' of tasks.

Fibro affects each person in a different way. When I hear someone with fibro still working full-time with kids, a social life etc. my first reaction is jealousy and shame. And I hate myself for it.

But then I accept that I am only human and these first reactions are normal. Of course, I want to be working, of course I want kids, a life, a social life, friends etc. And those days that I spend in bed (I have those too, though I know not as many as you do. I really feel for you), they are what they are.

Please as much as you can, see those days spent doing nothing are your days for your body and soul. It is what your body needs, so try not to fight it. Maybe if you simply let yourself have a day/week/month/year(s) of nothing without any mental stride against your reality, your mind and body will find some sort of rest to feel better again.

I don't know....I really really hope you feel somewhat better somehow and very soon...

 

[Brenda K]

I don't know whether they are the same, but I have been getting these shaky moments, sometimes hours here and there as well. It exactly feels like a huge TENS is hooked up to my body, it feels sickening. I get this weird sensation in my chest as well. I have no idea what it is, or even how to really explain it.

So again, I am not sure whether this is 'normal' with fibro, or it is something else. The shakiness can be really bad, I can't even type or hold a cup/glass in my hand. I will now be writing the times they happen and see whether there is a pattern (and maybe a reason)

Back to sleeping; I was tossing and turning for years, fighting with the 5 pillows I had on my bed (different shapes/thickness etc), it was a true nightmare. I've had failed surgeries on my neck, my back is filled with areas of bursitis/tendinitis, then my right shoulder got badly injured (and my only semi-comfortable position was the fetal position on my right side!) Then I also have my never stopping mind - I have to run through all the trauma's of my life, plus every day social events over and over again..

Yes this sounds very similar, I even get that weird sensation in my chest as well.
I almost cried when I read this. I too get so shaky and weak that I can't even hold a coffee cup. My head also shakes from the continuous tension in my neck and face. Sometimes the tension in my chest is so bad that I can barely take in a breath.
I have had two failed back surgeries and could only ever sleep on my right side in the fetal position too but now I can't sleep on my right side very often. My SI joint has gone bad and I tore my meniscus in my right knee. Had surgery and it should be better by now but it's not. I literally feel like I m falling apart! I am sure everyone else here feels the same. Sigh.


Diamond. Oh Diamond I know the shame you speak of, it absolutely riddles me with guilt because I have become so useless and it makes you feel so judged. People who do not suffer from this or chronic pain just have no understanding at all and not much compassion. Just suck it up and do it.... don't be so lazy.... omg I want to kick peoples teeth in when I hear that!
Again, I am so glad I found this forum!! *hugs to all*

 

[Lubkos way]

The morning, I have to say it is by far the worst part of my day too!You know within seconds,what kind of day you will have.

There is a sense of anxiety and hopelessness as soon as my eyes open,and I think about another day dealing with this nightmare.

The first two hours has been the period which,in the not so long ago past,brought me the closest to the darkest moments of my life.

It is when I seriously considered ending it,the only thing holding me back was I did not want to hurt my older sister(and her 3 daughters),who has MS and is a breast and lymph node cancer survivor(5 yrs.)

I now feel better about the possibilities of finding ways to chip away at the worst symptoms and with hope,effort and some luck.I refuse to give up on myself.

Yes,we do have it hard,and it is possible that we shall not find a cure.But,and there is always a but,I do feel better now,today,then I did 20 years ago.I am glad I decided to stick around,and none of you should give up on your future either.

I wish I could say some words that soothe your hurting,exhausted bodies and minds!But words can't end your unending pain,it will have to be some kind of treatment to make it less intense.

Please keep an open mind,Having hope is all we have,I truly believe that we together,sharing ideas can make it manageable!Hold on,it will get better!

 

[Peaceandquiet]

You said it Vicky....it's true hell waking up in the morning!

What you described is so similar to what I go through to try and get going in the mornings. If I have nothing on that day, I take my time and go through my little routine without pushing too hard...just being kind to myself.

Sometimes things are not in our control though. I would never, say, book a morning doctors appointment....or plan a breakfast out....or invite morning visitors. But every now and then if I just have to leave home early, I'm a mess the night before. I can't sleep thinking of the nightmare of getting up early.

If the world started at 2pm I would fit in well. Unfortunately, I don't fit in well with others and get laughed at a lot. Ridiculed, in fact, for my hopelessness in the mornings.

Knowing you, Vicky and diamond, BrendaK, Lubkos and TipnateeN all understand the struggle to get out of bed, eases my shame somewhat.

 

[vickythecat]

Sometimes things are not in our control though. I would never, say, book a morning doctors appointment....or plan a breakfast out....or invite morning visitors. But every now and then if I just have to leave home early, I'm a mess the night before. I can't sleep thinking of the nightmare of getting up early.

I know and I hate how this world revolves around the 'morning' person. Almost every appointment I've had to make (doctor's, lawyer's, registration, government business etc) in life were and are in the morning hours, and not 11am, but no at 8am. ahhhh.....

Or my mom's friends calling/visiting her at 9am, the phone ringing endlessly (my mom's semi-deaf) at that hour, or even our 'drink water man' (we have to buy our drinking water) comes by around 9am. (thankfully due to construction he now comes at 10:30, a more ok time for me)

It is really time for the world to realize that not everybody works at the 9-5 schedule. Not everybody is up and 'fruity' in the morning.

I also hate how morning people are made to look like hard-working people, and people like us are 'the lazy ones'....if they only knew....argghhhhhhhh

 

[diamond]

OMG thank goodness i thought i was the only one with the vibrating sensation through out my body with a feeling of non stop adrenaline! It burns my muscles and joints so bad and turns them to stone..

Its like being hooked up to some sort of electronic device and is the thing that used to only happen after high stress and lasted about 2 days which i dreaded because of the consequences.

It would switch me from having good fibro days to completely debilitated within 24 hours...severe pain...weak shakey nausea spaced out feeling.... supercharged like my mind was racing.

I would suddenly be so weak i could barely put one foot in front of the other.

Then as a few of you know i had a big personal upset some time ago now...Afterwards this vibrating sensation became almost permanent and has turned me into so disabled ..like the switch to shut it off no longer exists.

I gasped when i saw BrendaK's description about vibrating ....You too Vicky so many similarities Thank you both

 

[DJScott]

OOOOOOHHHHHHH MYYYYYYYYYYYY GOOOOOOSH!!!! I'm not the only one out there with these problems? I'm not crazy???

So Vicky... you said... "When I hear someone with fibro still working full-time with kids, a social life etc. my first reaction is jealousy and shame. And I hate myself for it." There is nothing to be jealous of with me! I work full-time, I have grandkids, and my social life is basically going to church on Sunday. But let me tell you, at times it is pure hell! I HAVE to work, and because of certain circumstances a couple of years ago, my boss made it quite evident that he does NOT like me being off on STD. He made my life MISERABLE for several months, so I don't dare even "act" like I'm feeling bad. I drag myself out of bed every day, and often wonder how I'm going to make it through the day. I slap on enough makeup that they can't tell how awful I look. On really bad days though, they can tell that I'm in pain. Occasionally I'll take a day off, or come into work late, but I have to be careful that my boss doesn't think it is going to become another time of disability. I rarely even walk around the building because I just don't have the energy or am in pain. By the time I get home, I can hardly open my car door and make it into the house. I don't know about you guys, but it's like it almost takes too much energy to breathe. I get into the house, change my clothes, and TRY to spend at least a couple of hours with my husband. He is such a dear that he will often help get the bed turned down and get anything I need. I usually head to bed by 8:00. Grandkids are exhausting, and thankfully the 2 that live close are older and I don't have to do much. They spent the night last night, but I was feeling so bad that as soon as they arrived I gave them a kiss and hug, left them in Grandpa's care, and went to bed. As the weekend approaches, I have in my head that I would like to do something, but when I do, I pay the price. My life basically consists of going to work every day, coming home, going to bed, and spending much of the weekend in bed trying to recover enough to go back to work on Monday. I usually try to get to church on Sunday, but spend the rest of the day in bed. Sooooo see Vicky... we might "look" ok on the outside, but inside we are suffering just as much as everyone else. I think that is why people don't believe or understand that we feel so bad - because we are always putting on a front as if everything is great! :-(

 

[DJScott]

As for the shaking, let me tell you one problem I have had. I don't know if you guys are on meds, but I take Lyrica. I honestly don't know if it is even helping me. Well at the beginning of the year I started getting the shakes. I would especially notice it when I was eating or bringing a drink up to my mouth. I was actually getting so bad that I was afraid I was getting Parkinson's. It scared me so much that I didn't even tell my family because I didn't want them to know. One day I got to wondering about medications I was taking. I started going through them in my mind to see if anything had changed. Well sure enough, a couple of weeks prior the doctor had upped my dosage of Lyrica to 100 mg, twice a day. I wondered about it, so I started researching and wouldn't you know, shaking was one of the side effects!!! I called the doctor's office and asked that they call in the 75 mg again, and said I was having a reaction. They checked with the doctor and called me back. He agreed to change the dosage, but I don't think he really believed me because he said, "That is a very RARE side effect!" I now can only take 75 mg per day without getting the shakes. Not saying this is the problem with any of you, but it is certainly worth checking into. It was just another case of feeling like I was going crazy, and not even the doctor understood!!

 

[Tipnatee N]

DJScott

I thought my tremor, shaking, buzzing were all side effect from drugs some point before too. But after I completely rid my self of meds , it's still going strong and buzz away like nothing can effects them. Even my inner buzz . Sometime I'll be trying to drink a hot tea and it just suddenly felling out of my hand. in to my shoes without any warning.