Help, I think I am relapsing!!
AnonymousFebruary 14, 2007 at 10:24 am
I started having body jitters for about 2 weeks and then last Friday, 02-09-07 it got so bad that I finally went to the doctor. They thought that I might have MS. My legs were jumping and arms were jumping also. The doctor gave me Ativan to take whenever my “jumpiness” would flare up. My GP wanted me to go to North Platte, for me to see the Neurologist to get a MRI and spinal tap again. I convinced my GP to just let me sleep over the weekend to see if might be from fatigue. I worked everyday from 8 to 12(noon) and then went home and typed notes for another 4-6 hours. By Thursday, I was extremely tired and my boss told me to stay home and sleep all weekend. My boss/therapist was just plain fatigue that wore me out to the point where my whole body was reacting. Has this happened to someone else? Is this how fatigue affects your body? It took all day Friday, Saturday, Sunday and part of Monday to finally be able to stay awake longer than 4-6 hours. I could stay awake for about 4-6 hours then I would have to rest/sleep. Even though I got up at 10 in the morning on Saturday, I still had to take a nap at 2pm and then stayed awake until about 10 after sleeping 1 hour. Is this normal for GBS or is this MS symptoms?
Thanks for your help and I am walking with a cane full time now.
Talk to you later,
AnonymousFebruary 14, 2007 at 1:16 pm
I too get the [/SIZE][FONT=Times New Roman][SIZE=3]body jitters! I have notice that it is worse when I’m sick or tired and there are days when I could sleep all day and still be tired. I work full time and by the end of the day I’m worse, weak and shaking some days are worse then others. They too thought I had MS but so far no, just the results from having GBS. Take care of yourself!!! 🙂 [/SIZE]
AnonymousFebruary 14, 2007 at 2:14 pm
I agree with the others that this is part of the GBS fatigue stuff. I ‘crashed’ last Thursday after having a busy weekend before and real busy Monday and Tuesday at work (8-5). Made it to work Wednesday and then home to sleep – I even slept through the season premiere of Lost 😡 I woke up in the middle of the night feeling feverish and hurting. Finally around 6am I called my boss lady and left a message on her phone at work saying I had a fever and sore throat (feel like I have to tell her something) and would be in the next day. I slept all morning, woke up for 2 hours then back to sleep all afternoon. Up for a few hours before going back to sleep at 8pm and slept through until 6am. Worked Friday and went out for a few beers, but was so, so tired and went home very early (7pm) and back to bed again. I didn’t do anything all weekend except get myself ready enough to meet my siblings for our weekly Sundy dinner.
Anyway, I hope this helps to have shared what a few days of fatigue in my life is like. I live alone – except for my sweetheart Tigger – and at times like this I am grateful because I don’t have to answer to anyone! Although, I do have to get up to feed myself, etc.
This is a very isolating and lonely illness with as much sleep/rest as we need – even though ‘we look just fine’. I would encourage you to find a therapist to help get through some of the ruts we sometimes get stuck in. Although, this forum is as good as any therapist I have been to. So just keep posting and we all help each other!!! ***big hug***
P.S. I too was tested for MS, Lupus, and others.
AnonymousFebruary 14, 2007 at 3:52 pm
Sorry I’ve been incommunicado for a few days. Life got crazy!
The jitters are unfortunate but very natural. When I overdo it severely, I don’t just get exhausted, sometimes my body twitches. And especially my legs shake badly if they are overused (especially right after an exercise session). It is your body crying foul, and you just need to see it as an annoying signal that you are trying too much too fast. Your body has just been through a huge ordeal and so it will be particularly sensitive for awhile. It will be quick to let you know when you’re asking too much.
These can be scary to experience but in time you’ll get used to the warning signals. It took me awhile (as I love to point out, I’m obstinate as hell and like to think I control my body — ha!) but now about 90% I can sense when I’m about to “go flat” as I say, since my fatigue reminds me of someone letting the air out of a tire. So I can be home or almost home by the time the exhaustion really hits me. Still not optimal but getting better. I haven’t had the sort of bone-crushing fatigue I used to experience for about two or three months. At my worst point, it basically hurts to breathe because it takes so much energy to do it. I find myself trying to breathe slower and less. But, again, by being more careful and prudent (and having a fiance who makes me take care of myself and helps in that arena) I’ve been able to avoid that experience for awhile. I used to find myself in it almost once a week!
So try to take some hope away from this and know that soon you and your body will reach a working truce.
AnonymousFebruary 14, 2007 at 8:19 pm
Hi Confused Rose-I think we all have residuals and they can be different for each one of us or some will be the same for most of us. I get’em when fatigued and sometimes it can be scary but the typical residuals for me are typsy when fatigued and tingles /possibly numbness here and there. Like you, I was worried a month or so back for a few days but just fine now. For what its worth, I’m 2 years out and able to do anything I could do before, only I learned when to quit.(Physical work) You will learn the same…I hope you are not relapsing—chances are low that you are. Good luck and do not overdo it. But don’t let that be an excuse either!
AnonymousFebruary 14, 2007 at 11:44 pm
h! when i’m tired, stressed or over did it a bit, i get really shakey too. i can sleep for 2-3 days almost non stop sometimes. we all seem to have very similar residuals. please keep on top of this to make sure it’s nothing worse than residuals. i’m praying for you that that’s what it is.
AnonymousFebruary 15, 2007 at 12:56 pm
Been going through something similar these last couple weeks for the first time. I think it’s scarier than what I’ve gone through at any point in these last 7 months (minus that first week or two). Guess I convinced myself that progress would be slow but I wouldn’t backslide no matter how hard I worked or worked out. I’m currently rethinking that position and also trying to fight these demons telling me that maybe something else is wrong or I’m relapsing. I went to see the neuro last week and that helped– he’s going to check again next week and if I feel like I’m sliding further we’ll take another spinal tap. That helps and I’m just trying to find other ways to take my mind out of this process enough to alleviate that extra stress. It’s hard. The other feeling that’s hard to deal with for me is not wanting others to know that things aren’t going swimmingly right now. Worked hard to get back to this place and trying to get others to forget about the GBS and not worry, etc.
Not sure any of this helps but just know that you’re not alone.
AnonymousFebruary 15, 2007 at 7:32 pm
Having read the posts here, I’m beginning to wonder about last weekend. I’m 13 years on from GBS and usually hit the couch rarely.
I hit the couch (lying down)when that weird fatigue comes calling. Last weekend I was lying on it more than I was off it. I was working on Thursday and Friday and it was busy, although my work is not physically demanding.
Nevertheless, I was on the couch Friday evening and Saturday evening. Sunday, I hit the couch around 8 pm, woke at 3 am and slept another 7 hours in bed. It did scare me somewhat but that is just how it happens sometimes.
When my body tells me there’s something funny going on, I lie on the couch and wait – then my legs start twitching. Eventually, I fall asleep. And I stay there until I wake. I tend to see the twitching as a sign that things are on the mend.
I have been surprised by the number of people who said they were sooo tired las weekend. At work today, 2 others were wrecked, I was the one that felt okay!
Time and experience has helped me to not be too scared – though I must admit that last weekend did make me wonder a bit. Whether it was because of GBS, simple fatigue or a change in the weather, I don’t know.
I just remembered, I take anti-depressants – Seroxat, an SSRI. I often forget and when I don’t take them for 3 days the twitching returns and it’s not nice. Seroxat contains Seratonin, which is a chemical made in the brain that helps messages travel along the nerves. Long before I was diagnosed with clincal depression (hence the anti-depressants) I used to get those twitches and I discovered by accident that Seroxat seems to help – either that or,coming of them, brings back those twitches.
I hoe this makes sense. It’s very late here.
AnonymousFebruary 19, 2007 at 2:09 pm
Thank you ALL!!!
All of the threads basically said the same thing, TAKE IT EASY AND REST!! It has taken the last 10 days for me to finally feel more like human. Today, I came to work for a couple hours and I am not feeling fatigued. I have been tested for MS and have not heard the results as yet. I truly think that I pushed myself too much and just needed to rest!! I am just typing at home and then coming to the office to print them off and pick up more tapes. That seems to be enough and then in the afternoons I lay down to rest at least a hour or 2.
Thanks again, it has really helped for all your support. I hope that some day I can return the favor!!
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