Multiple Sclerosis Community
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428506 tn?1296560999

Weirded Out-Waking up in odd state

Hi All,

I just woke up (3 AM my time) and was in an uncomfortable and difficult to describe state.  My whole body, worst at the feet/hands and decreasing going in, was stiff and uncomfortable.  Not pain, just discomfort.  After slowly wiggling around a bit in bed, I got up and over to my laptop.  

This has been happening more and more as the temperature swings at night.  It's been around 80 degrees F here during the day, low 60's at night.  Starting tomorrow night, it will drop much cooler, I think down into the 40's and maybe even lower on the weekend.  So I'm concerned about how my body will respond.

My symptoms have been changing with posture and temperature for a long time, but the details are not constant.  Several months ago, I would wake up like this with strong tingling and/or burning in the same pattern, that would also lessen upon getting up within minutes.

I first noticed heat intolerance late winter.  In the beginning, I'd get stronger/more intense tingling and/or burning upon getting too hot.  Now, warm showers (which I get tempted to take because of the morning stiffness) make me feel nausea (though I've never "booted" from it), and just wiped out and sort of flu-like.

Confession:  I'm just starting to lose it.  This doesn't make any sense.  I took off work yesterday because the ongoing psychological distress of these problems is eating me alive.  Speaking of eating, I've been doing too much of that and less exercise.  I feel sorry for myself and don't want to workout through the discomfort, and feel like eating more is a way of relaxing.  But I know I need to knock that off.  I just feel better being able to confess these signs of weakness.  I don't want to (totally) lose my mind, I just feel really off with all of this.

I'm not sure I have a question, just waking up like this and coming here to let it out.  I know if any of you could tell me what is doing this, you would.

Again, this just sounds so nuts.  Whatever is happening to me continues to change/morf/progress.  While that totally stinks, I really really hope I am getting close to the point where a doctor can help me.  

Thanks for listening
6 Responses
Avatar universal
I am sorry things just keep getting weirder (is that a word?) Seems many of us here go through the same things.  You think maybe no new symptoms are coming then you get hit with something new.  Been there, done that, keep doing that, when will it end?

You're not going crazy, if so, then a lot of us here have already gone there...ha..ha..ha..

It does get frustrating when there are no answers to what is causing all these freaky symptoms.  All any of us can do is keep seeking answers and deal each day as best we can.  Having this forum is a major plus, cause we can come here and vent, question, and just be.......and everyone on here understands us and is here to listen and support.

You hang in there and just stand as a proud member of us limbolanders and pray we all get our answers soon.

You are in my prayers.............

Avatar universal
Hang in there Lady, you are not losing it.  

Your body is doing some whacky things for sure, and hopefully something can be done to decrease the whackiness.

That is why we are all here - to talk to other people who are having whacky things happen for indeterminable reasons.

You are NOT alone!

572651 tn?1531002957
What's really nuts is spending millions of dollars for that superconductor underground.... :-)

You are having what appears to be a typical physical and psychological response to lots of c rap happening, with no end or resolution in sight.  And your relationship with food ... well you know those answers too because you readily acknowledge that it is a problem.

I really admire all of you who are hanging around in limboland, I'm not sure I could do serious time in that unknown state without losing it myself.  We will continue to be here for you.

May you get some answers soon!
405614 tn?1329147714
I'm sorry you're feeling crumby.  I can sure relate to eating some extra for comfort, and I haven't been able to do much exercise besides fairly slow walking for quite a while.  I don't think it's weakness to look for comfort, we just both need to find a more healthy comfort.  I mean, I generally have healthy comfort food, but too much, and an occasional scoop of ice cream, or a cookie.  What could help you relax and feel fine without making you feel weak later; do you like music?  How about coloring with crayons?  :o)

My weirdness lately has been waking up with my whole body too tired to move much, and my vision all jumpy and jittery, eyes and mouth very dry, and occasionally severe aches. I can lay in bed until it lightens up.  Drinking water helps, but sometimes it won't go down and has shot back out when I tried to take a pill.  The pill then proceeds to squeek down my throat, and I can feel like bubbles around it.  Sips of water can ease the passage.

I'm telling you this because there is a lot of crazy stuff going on with a lot of our bodies, and I thought I'd give you one example.  I have the luxury (hah!) of being on disability so I don't have to deal with work issues, but it does stress me out to not be able to rely on myself to get things done.  It often takes me half a day to get around to taking my shower.

I could just hear in my mind Sarah McLachlan (sp?) singing that song about finding some comfort here.  I often crawl out of my bed and prop myself in the computer chair, and catch up on my forum family.  Takes me a while to type because of adjusting my vision and my right hand/forearm aching, but just reading what's going on makes me feel more connected and less nutty.

Wonko, I didn't mean to use the word "I" so much in a  post to you, but found myself comparing what you're  going through to what I'm going through.  Different, but similar feelings.  Just don't go checking into a funny farm; there's not enough room for all of us there!

If you have or know of a good therapist, it might help to have a visit or two to help you smooth things out.  I have one that I can see at the Pain Clinic, when things get too rough. She's been helpful.

Hmm, maybe think of this as a "plateau" in your acceptance of the strange changes in your body as well as your changes in diet and exercise.  You're not slipping backwards or downhill, you're stuck on a strange plain where the gravity is higher and your challenge is to find the way to the other side and through some woods to a beautiful valley where there is an outside exercise course where you take a brisk walk, do a couple crunches, take a stroll, hand walk through some parallel bars, etc.

OK, who's crazy now?!!  I think I read too much.  Actually, I found a cool path like that in New Mexico along the Rio Grande, and wished I had the energy to do all the exercises.  It was enough to walk along and see it all, and take lots of pictures.

Sending you Hugs,


195469 tn?1388326488
I call you "Wackie Wonkers," because I believe when someone gives you a knick name, it's because they really care about that person.  And you are the type of person that would enjoy a good laugh and understand that I call you that with love.

Oh sweetheart, I can so totally relate to the way that you are feeling right now.  You're fed up with dealing with all these changes in your body.  I would hazard to guess you are feeling helpless.  I have been feeling the same thing in the past few weeks.  I'm tired.  Tired of waking up everyday, only to feel like total S H I T.

After my 125 pounds of weight loss over the past 2 1/2 years, I have now put on a sudden 11 pounds.  I haven't been exercising and have been feeding my hopelessness with food.  

So dearheart, I totally hear you and I do feel your desperation about all of it.  You are tired and do not understand what is happening to your body.  Wonk, I think all of us go through this from time to time.  Let's not let all of our hard work at losing weight go by the wayside.  We've worked to hard at keeping this weight loss going.  Let's not fall back into our old patterns of using food to console ourselves.

I'm here for you girlfriend.  We all are.  Keeping posting about what you are feeling and experiencing.  It helps to talk with others that understand.  You are NOT alone.  We love you.

Big, big hugs,
428506 tn?1296560999
Thanks, everyone.  I think I'm just going to have a rough couple of days, and allow myself to feel c rappy during that time.  And I'll try to minimize how guilty I feel about it.  

I'll re-assess, and know I will fight the good fight, but some depression and negative feelings are normal and human.  So I'll just be in my corner feeling blue for a bit.  But will come out gloves in the air when the bell rings!  (OK, too many metaphors and cliches, but you gotta do what you gotta do!)

Doni & Richard--Limbo ain't for wimps, is it?  Thanks for the support.

LuLu, I haven't checked lately how the attempts to re-create the birth of the universe are going, but at least they didn't blow us up in the process (yet).

FM, I need to listen to more Sarah McLachlan and eat less cheesecake.  It's fine to reply with "I," shared experiences on the forum are a big part of what is keeping me (mostly) sane!

Heather, I had almost reached the -40 lb mark when I started the current slip.  I think the damage has been controlled to a few pounds and I will be careful.  Losing weight hasn't "fixed" me, but I know it is very good for me and I'll be very careful not to backslide too far!  At my start, my BMI was in the "morbidly obese" category.  I'm still obese by those durn tables, but am rather relieved to have lost the "morbid" tag.  I hope to keep losing and get down to just "overweight," but that title is about 30 lbs away.  Maybe I'll get there by spring.  But yes, the most important thing is to not gain it back!

Everyone--I'll be away from my computer for a couple of days, my best to you all and I hope everyone has a good weekend!

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