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Old 10-05-2010, 02:33 PM
RockysMom RockysMom is offline
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Fatigue & Body rocking question

Hi all - I'm sorry I'm not a frequent poster at all but I do find this forum very helpful and as I progress with MS, I will be here more frequently.

I was dx:ed 10 years ago, also had neuro Lyme's concurrently and have often wondered if I really have MS or some genetic thing as my dad has very similar problems to me. However he has never been to a neuro & I would have trouble getting him to go to one - but I will!

Anyway a question about fatigue - I'll be doing chores, light to heavy it doesn't matter, but after what seems like not very long, I start to have trouble standing up, my knees bend more and more. As I go along, eventually I can no longer stand at all and practically crawl to bed. After resting for an hour or so, I can start again. But the times that I can stand become shorter and shorter during the day. All in all, I have about four sometimes five periods where I am able to do things on my feet and then I have to give it up.

Does anyone else have fatigue similar to this? I don't feel tired necessarily but the legs give out. Told my neuro and he double my Adderal dose. Helped for a week, but that's it.

2. Second question - when I'm going through a period of extreme stress in my life, I'll be lying down trying to sleep and my whole body rocks back and forth very slightly. Thought it was just something I felt but DH says I am actually rocking back and forth - the whole body. Anyone else????? I did some research and all I can find is some type of psychosis that causes that - I really didn't fit that profile psychologically although who knows, maybe I am crazy.

Thanks for your help!!! I really appreciate any help anyone can offer as far as similar experiences. When I can, soon, will go back to my original neuro as my current one is not very good IMHO.
Old 10-05-2010, 03:29 PM
REG53 REG53 is offline
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Hello RockysMom,

I have the same problem with my legs, it sounded like you were describing me and sometimes when I am sitting I feel like I am rocking.

I hope you find answers soon.
God Bless Us All
Old 10-07-2010, 08:27 AM
RockysMom RockysMom is offline
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So I guess this board is not very active? Does anyone have suggestions of a place/forum where I might actually get some responses?
Old 10-07-2010, 10:53 AM
RockysMom RockysMom is offline
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Thanks REG and Sparky.

I think the rocking is the more disturbing of the two symptoms. The leg weakness might possibly improve if I lost weight and maybe actually used my recumbent exercise bike. I do plan to do that but am too busy at the moment.

However the rocking thing is something I worry about more. It reminds me of that movie about Jaqueline DuPre, how she couldn't stop rocking. I worry I will get that way eventually but I thought steroids was used to prevent that kind of severe reaction these days.

Well I guess I shouldn't be too surprised that not a lot of people exeperience the rocking because I was such an atypical MS presentation.

All in all I feel pretty fortunate so far but 2010 has been the worst year so far, because of the excessive heat this summer and the financial stress from the recession. I feel like I have aged 10 years in just one year.

So far just one person, REG, has the rocking feeling. I will keep asking though.
Old 10-07-2010, 07:12 PM
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Sunshyne Sunshyne is offline
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This may sound a little off - but there have been times in my life when I was extremely upset that I would find myself rocking back and forth a little bit - and that goes back to when I was very young.....and yes I have felt that slight little rock while lying in bed.

I really do believe that it is a form of self comfort. From our youngest, when we were upset our mother's rocked us.

I've never been worried by it, and I don't think it has anything at all to do with my MS.

I could be way off the mark, but I truly do believe that.
Dx 06/07
Old 10-07-2010, 07:25 PM
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Chelenae Chelenae is offline
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I get extreme fatigue but not like yours.

I also seem to rock slightly whether sitting still or lying down.
My doctor seems to think it is because I have essential tremors. Hopefully, I will remember to ask the Neuro when I see him this month.

Hugs and Prayers,
Mis-Diagnosed with Parkinson's for 1 year.
Now being watched and tested for Neurological Movement Disorder, most likely MS.
Old 10-07-2010, 09:25 PM
RockysMom RockysMom is offline
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Thanks Chele! I do have tremors also, I guess I should have mentioned that. It is infrequent though but when I'm having a full blown attack, I have them all over my body. Maybe the rocking is a full body tremor. I wish they would go away, fatigue doesn't upset me but to think of my whole body rocking uncontrollably is upsetting and upsetting to those around me.

I will look more into this and what I might be able to do to manage them.
Old 10-08-2010, 05:43 AM
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rocky282 rocky282 is offline
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I do the rocking thing almost all the time. It started after I had my kids, some of my friends call it the mothers rock. lol It is like my body remembers that rocking worked for the kids so it is trying to rock me to some level of comfort. I have what they think might be RLS so my legs are painful and twitchy all day long. I think I rock to try and get my body to think of something else. I even do it when I'm at the store, I know because someone commented on it. I just said I was going along with the song I just heard before I got to the store. They laughed and said don't you hate when that happens, the song is stuck in your head. I said yep and smile. They don't need to know that I rock no matter what.

As for the fatigue, I've got it and it's pretty bad, but I also have alot of sleep problems, so Dr's think that is causing some of the trouble.

Good luck
Time is but a name we give to the passing moments of life, it is these moments that hold all the meaning.
Old 10-08-2010, 06:51 AM
Bamagal Bamagal is offline
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body rocking

Yes, I have it also. To me it feels like someone is sitting by me moving their legs and moving the whole sofa or bed.
Mine also usually happens when I am tired at the end of the day or at bedtime. I feel a slight steady movement/rocking of my whole body.
I also have tremors that are mainly my head moving as if I'm saying "no", but I'm not. My Neuro said I have lesions deep in my brain so maybe that's the reason for it. This resembles someone with Parkinsons.
I think mine happens when I am fatigued or stressed out.
I take Inderal LA for it and have gotten the rx mg. raised twice so far. I'm not sure if it helps or not. I tried Mysoline (Primidone) but couldn't tolerate it.
Be sure and talk to your Neuro about it. I would be interested to know what you are told also.
Old 10-08-2010, 08:03 AM
gretchen1 gretchen1 is offline
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Hi Rocky,

I am like you, I read but I rarely post. I don't rock rhythmically but when I am tired I have a lot more trouble standing still. I have a large lesion on my cerebellum and this gives me trouble managing my body in space.

It's like I am making all these tiny adjustments to staying in place. If you saw me at this point, it would almost look like I am standing on something that is moving just a bit and I am adjusting to that movement.

The only way to advoid this look for me is to put my leg or hip against something solid to remind my brain that I am steady and not falling over.

I hope this helps.
Old 10-08-2010, 08:26 AM
RockysMom RockysMom is offline
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Thanks so much for your replies everyone. I am glad it is MS-related and not a psychosis

Bamagal - thank you so much for mentioning what you did, my last two lesions were also deep in the center of the brain and I also have very much a 'parkinson's look' to my MS, which is one reason I often wondered about correct diagnosis.

I will ask my new neuro (when I get new health insurance next month, I'm going back to my original neuro) about the drug you mentioned. I did tell my current neuro about this whole thing and he had no comment. I really don't like him and could say a lot of negative things about him but he is one of only 3 in this town who go to our local hospital and he is better than the one of the remaining two I used to go too. I haven't seen the third but whoever that is probably is no better. But my original neuro (50 miles away) was brilliant. So I will go back to him soon.

What a relief to find out this is something 'normal' in MS world Thank you all so much!!! This has been on my mind for years!
Old 10-08-2010, 08:43 AM
MS TOO MS TOO is offline
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I too get the leg weakness, fatigue. I call it my weak and wobbly days and it is much worse when it gets warm or humid. There are days working in the yard when I squat down but my legs are to weak to just stand up and I have to go all the way to the ground on all fours or on my butt and then use all of my muscles to stand up or grab something to pull myself up with. I know it sounds strange but there seems to be something different about using more muscles to stand back up as I can't just squat down and stand back up again.

I don't think I rock but I do find myself rubbing my arm alot. I have severe nerve pain in my right arm and when it gets bad I rub it and the rubbing creates a feeling that seems to override the pain sensation somewhat. When I start rubbing bad, I know it's time to take a Vicodin. My boss has noticed the rubbing and has been very understanding as one of his best friends has dealt with MS for a number of years.
Old 10-08-2010, 12:33 PM
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Deer In Headlights Deer In Headlights is offline
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I was dx last Sep and still haven't stopped rocking. It isn't constant, it is usually when I'm standing, helping students out and walking around their desks. Oh yeah, I'm a Special Ed. teacher to boot.

It's like getting off a boat after two days, or walking and someone tilted the earth, just so slightly that you're walking on a slanted street. Fatigue, it usually hits me around 12:30. My feet just get tired and have to slow down for a bit. I usually slow down, but then the real work really starts.

Drive home in traffic, 45 minutes, 3 girls and 1 boy(12, 10, 7, and 5), soccer practice for 3 of them two days a week, dance for 3 of them 4 days a week. 3 soccer games on Saturday. Oh, I almost forgot, I'm married and my wife stays at home. I'm getting dizzy just writing this. I'm going to relax before I have to go to class.

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