Anyone Have Constant Weakness And Vibrating?

[Tarastomsgirl]

I seem to be having the worst time this past month. I cannot for the life of me get rid of this body weakness. Its esp bad in my legs and when I say bad I mean BAD. Like gonna collapse all the time feeling. Even my butt feels weak. Also I have constant body vibration feeling. No one else sees it or feels it but I feel like I'm laying on a huge vibrating cellphone all the time! Anyone have this, anyone know what helps? I seem to be having boughts of high bp (130's /90's) which I've never had before I usually run in the lower 100's over 70's. Its all so weird! I'm not on any medications either to make this happen

[lgtaylor100]

Ever since I got sick I have had a feeling in my chest that I describe as churning. Maybe that is the same as your definition of vibrating. The churning goes on when I am most symptomatic even if my heart rate is not high. I have told doctors about this feeling and generally they just ignore the question. I am on medication now but this was one of my first symptoms before I knew what was going on.

[Tarastomsgirl]

HM mine is definetly a vibrating feeling, through my whole body ..Almost like if you were laying on a vibrating cellphone. Sometimes I swear my teeth are gonna chatter but everyone swears I'm not!

[Katybug]

I have this on my really bad days. Its all I can do just to go from the bed to the bathroom...I have to hold on to something the whole time I'm up. I have had to sit down in the middle of showers because it will hit me all of a sudden and it feels like my legs simply are not going to support me anymore and my arms feel like they are a 100 lbs.. I feel the vibration too. The only place its ever visible at all is in my hands but sometimes I can feel it in my hands but its not bad enough to be visible. I wish I could tell you a good solution. I've had some luck with major salt loading (like I've asked my mom to go get me a Big Mac Meal cause there's sooo much salt in it that I can get a huge dose in one meal), compression stockings even while I'm laying in bed (but I don't sleep in them), Gatorade, and belive it or not...a cup of caffeinated coffee. I know the coffe is weird but if I do just one cup, it sometimes has the reverse affect of caffeine and actually slows me down...sometimes I have to dring a cup to fall asleep at night. (You know POTS...up is down, right is left. ) Some days though, the only thing that helps is staying in bed so I don't get worse.

Hope you feel better soon.

[Tarastomsgirl]

thanks , yah I'm in that REALLY bad phase right now and its been going for a month. I feel terrible cause I have a 2 year old so i can't stay in bed and my husband works nights so he sleeps all day! So its all on me and I feel like the worst mom cause I can't take my daughter to the park , or even out to the lakes so she can see the ducks. I just want to lay in bed all day and yes some nights when she goes to bed its all I can do to get up and pee and not be afraid my husbands gonna find me in 12 hours when he gets home busted up and bleeding passed out in the bathroom all night! I'll try some coffee see if it helps. My gf recently went to Mayo and the doc she say works with Dr. Grubb. I guess they've found Gatorade is kind of old news, the thing to drink now is Smart Water and put bullion in everything (liquid) like every day eat a bullion soup.

[Katybug]

Ooooo, I'll have to try the bullion soup...I hadn't thought of that! I've been staying with my mom since last November because of exactly this issue (plus the dizziness) because I lived by myself and it finally just got too dangerous. I would literally fall into the wall trying to walk...had bruises all over me.

I know it's hard. Is there anyone that might be able to take you and your daughter to the park/other activities and allow you to sit while they monitor her (maybe even hire a babysitter for 2 hrs once or twice a wk for this kind of thing?) At least you could be present....

On a hopeful note...I went through a bout of this from mid-July to early-Oct (partially brought on by a new med) but now I am at least well enough to leave the house for about 2 hrs each day. I still have to get home at around the 2 hrs mark as I start to shake and get the dizzy, weak, drunk thing, BUT, it is better than being bed-ridden for 23 out of 24 hrs. My point is...this too shall pass.

[Lovebug]

I have the same feeling sometimes and I hate it! I don't know what it is, why it happens, or how to make it better. There is some consolation in knowing we aren't alone in this.

[icesktr189]

pedialyte! I swear by that stuff. I buy 3 things of it on a bad day and go to town... way better than gaterade because it has WAY less sugar ( i think it might not have any... it taste like it doesnt)

[toddm1960]

I call them internal termors, I had a hard time describing this symptom to doctors. I get this everytime I do too much, stand for too long or picking things up.......like laundry. For me it goes hand in hand with my bone crushing exhaustion, it's something I get a couple of times a week.

[Dizzysillyak]

It's possible that you're buzzing from gluten, dairy, hfcs or caffeine. I used to do this 24\7 before

eliminating gluten. And noticed it from caffeine too. Not only did I get an initial buzz from caffeine, but

it would come back hours later out of the blue.

Gluten and dairy are known to work like opioids in some, all ?, autistic kids but can do the same to anyone. If you google gluten autism, you'll find this info. I think the problem is leaky gut.

Sun theanine stopped this for me but taking it during the day also wiped me out. I still use it to help me sleep tho.

Hth .. D

[Tarastomsgirl]

It's possible that you're buzzing from gluten, dairy, hfcs or caffeine. I used to do this 24\7 before

eliminating gluten. And noticed it from caffeine too. Not only did I get an initial buzz from caffeine, but

it would come back hours later out of the blue.

Gluten and dairy are known to work like opioids in some, all ?, autistic kids but can do the same to anyone. If you google gluten autism, you'll find this info. I think the problem is leaky gut.

Sun theanine stopped this for me but taking it during the day also wiped me out. I still use it to help me sleep tho.

Hth .. D

I've been gluten free for almost 2 months

[HopeSprings]

YES to weakness - my arms and legs especially. This has gotten so bad for me this year. I just got back from the supermarket and what an effort it was to push the cart - my hands and arms feel so strange. I can't even bring all the groceries in anymore - I just leave the non perishable stuff in the trunk for my husband to deal with later. It's sometimes such an effort just to walk. But none of this shows up on neurologic exams - my strength tests normal according to Dr's and EMGs are clean. I wonder how this all relates to POTS? Muscle stuff isn't talked about that much.

[Dizzysillyak]

I've been gluten free for almost 2 months

Hi again,

Have you removed dairy, caffeine, dyes, chemicals, corn, soy, and anything else that may be causing this ?

Fabreze did this to me once after I'd gotten it under control.

It's a real pain trying to figure this out but once you do, not having those crappy feelings

is worth it.

I wish I knew more about nutritional deficienies that may contribute to this but since I couldn't digest

these for a few years, I never saw a connection. Food restriction was all I could do. I've read that mag and b6 taken together helps some neuro symptoms

. And b12 .. Also, lieze just pointed out what low iron/ferritin can do.

From what I've read about sun theanine and experienced myself, it should work for this. I had to take 100 mg every 4 hours at first but within 2 - 3 days could back off. I had a freind visiting who was

eating gluten ... So I got nailed via cross contamination.

Hope you feel better soon ... D

Edited November 4, 2011 by corina

[Dizzysillyak]

Btw. Most of my weakness was from gluten ataxia which took a whole year on the gf, etc diet to correct. I had no clue that this was going to happen. It just disappeared one day ..

I say gf, etc because even tho I'm a celiac with the dq2 gene which makes me prone to

gluten ataxia, it appears that most people need to eliminate as many cytokines as possible to really heal. Cytokines come from food intolerances, chemicals, etc ..

I have an article somewhere on cytokines if you want it ... Tc .. D

[E246]

Hi,

Yes i get internal tremors a lot. They are not painful and tend to happen if i have done too much.

But they are most pronounced in bed. Sometimes i wake up and feel like my body is literally bouncing in the bed. At first i thought it was my heart going fast and i was sure you would be able to see the vibrations - but like everyone else says - you can't really see anything.

You are not alone and it definitely happens when you are tired.

I also often feel weak which is seperate to feeling tired. My legs want to give way even though my heart rate is not particularily high.

Hope this helps and you feel better soon.

[Tarastomsgirl]

Thanks you guys I'm glad I'm not alone. Truthfully no I haven't eliminated dairy completely and I've tried as best I can to stick to mostly whole foods (altho I have had some things that aren't whole foods of course) The gluten ataxia is interesting. I do believe some of our issues come from Gluten like I said when I went off of it the first 5 days I was esentially symptom free. I spent the last year in culinary school where lets face it not gluten free and its all in the air. The day before I graduated I was given the "flour salute" in the parking lot and had flour thrown on me from all directions. Got it all up my nose, in my eyes mouth etc. I felt horrible after that and though omg I've just had gluten overload so when I cut it out I got better. Then I wake up one day and im just awful sick. I thought I had been cross contaminated so I was extra regimented about keeping my things separate from my families to no avail.

I really think this is an autoimmue issue mostly I have sores on my legs..well not sores it seems I got bit by a bug or scratched myself and they took MONTHS to heal, and they didn't heal right. The one got so bad even after I kept putting neosporin and peroxide on it that I had to get stitches to close it cause it turned into a hole on my leg. I had it biopsied which didn't have anything to write home about. It happen again this past week I've had this bite or scratch and I could tell the past month it wasn't healing right. I ran my finger over it and i could feel a bump in the middle, When my fingernail caught a whole white hard tube thingy came out and then puss behind it. Once again a hole was left which I started with the peroxide and neosporin and it looks like its closed but I'm now left with a dark purple looking ring.. its all so weird!

[Dizzysillyak]

Have you googled those sores yet ? My dd got bit by a brown recluse once that left a hole but I don't know what else does that. She was bit on the side of her neck and had to have it cut open.

Gluten intolerance is common in other diseases and would explain your positive response. It's late so all I

can think of right now is lyme. All the lymies I know are gluten intolerant.

Hope you get this figured out. Tc .. D

[Katybug]

Tara,

I can't remember...have your docs considered some sort of mast cell disorder...I know you have said that they have done extensive autoimmune testing on you but my POTS memory doesn't stay with me too long...