Extreme Muscle Weakness/& General

[dizzygirl]

HI folks...

over teh past few months and more recently (few weeks) i have been having bouts of extreme weakness.. where i cant even hold anything.. or barely move.. for that matter..especially after paralysis spells.. its taking longer and longer for me to recoop from it...

I'm having paralysis now when I'm fully awake.. and I've noticed that one side or all of my body will loose muscle tone.. its just flabby.. it feels like there are no bones in my arm or legs or arm hand and neck...I've called my potsy doc. office and they said that isnt a common or normal symptom.. but i'm not sure where to turn for help on this one b/c I'm afraid if i go to a doc other then my pots doc that they will lobel me as nutty its I go in and "say I feel like I have no bones during these spells"..

anyone know what I mean?

But I kind of feel as though I'm fighting an unfightable battle.. I'm growing weaker and wealer it seems as the days roll by... I'm using my wheelcahir about 90% of the time now... and I am having a hard steering the darn thing.. I'm taking the paint off the walls..b/c i feel like weak and cant steer it..

I'm trying to do some resistance exercises to build back up my strength.. and stamina.. but it doesnt seem to be going real fast...I bought 2 little dum-bells (they are "pink" hahaha).. I bought 2 -2 pounders.. they did not have 1 pounders.. and you know tht they where to heavy for me to lift! that is just down right pathedic!

GRRRRRRRRRRRRRRR

SO I'm going to try and use them... and I'm trying to find some ankle weights that come in 1/2 pound dealies...still looking..my b/f has this hand grippy thing.. and he is making me try and squeeze on the lowest setting...I tired to do that... and i couldnt.. i started shaking like abowl of jello... so i used both hands to squeeze it.. i still shook alot but managed to squeeze it a whopping 2 times~!!!!!!!!!!

My doc suggested that i used soup cans to start off with.. as they are lighter and work my way up..

do any of you have any muscles resistance/ regaining strength exercises or any thing that might be of help to mne?

I worked with a PT dud a while back and he gave me some legs things to do... i manage a few a day. but my feet and ankles start to cramp up badly.. ouchies..

I dont know what is going on or happening to me.. but I'm trying to fight it. and find something even it if seems really little to do.. and like to outsiders tath it wont make a diference.. but amybe it will.. who knows

thanks guys

jello blobs girl

[Guest tearose]

gosh, two years ago this was me!

I couldn't turn doorknobs or walk without assistance...I felt clumsy and my cognitive skills were bad too.

My pcp was at a loss. We started to be concerned with neurological decline and serious stuff...

Here is what I did...

Do whatever you must to wake up your brain. Put on music and get your body on the floor.

It really doesn't matter what you do, just raise and lower different parts of your body...slowly. If you do three leg lifts on one side then do three on the other. Catch your breath and then work on your arms. Just try to do this every day, make adjustments as you need. Make it a habit. Make your body learn that 10am is exercise time and it will start to get use to it. Then add another challenge.

I think what helped me tons was that I did things to wake up my brain too. Do puzzles and listen and sing to music. The ability to learn new things ANY thing..words to songs, problem solving...gets the brain in gear again!

I don't know why you are so weak. I swear I can't believe things got better for me...I sometimes wonder if there is yet another weird virus I had caught and it made me plummet...sounds like near where you are in ability now...anyway, I'll look through my old posts to see if I did other things to help too.

Just please be careful not to PUSH because when you are this weak you don't want to tear or damage your self either. Take one task and work at it slowly. It may take a year, but have patience and determination.

best regards, tearose

[nadine]

I am so glad you brought this discussion up. I can relate to what you are describing, as odd as it seems. I have felt like there is nothing but skin at times, bones randomly feel like they snap and crack as well. I haven't had paralysis, but very close to it. I will get numbness and odd sensations, I will lose feeling. Some of my problems is deconditioning from being in bed so much for sure, but I have also been worried that something more neurological is going on- so far no other new diagnosis. Continue to followup with my physiatrist.

I was not able to tolerate the most simple PT programs, so I was discharged. When I tried using weights of 1 pound and resistance bands for leg exercises, it made me much worse.

I agree with Tea's comments, in that I had to force myself to do whatever I could and try to get my body, brain going. I just focus on movement and doing just as she stated a couple leg lifts if that is all I can do, also moving arms and walking as much as I can. Stretching. I am trying to build up my standing time, this is a challenge. My coordination and balance is horrible, esp. when fatigued. I am always dropping things!! I really try to just move in my house as much as possible. Every now and then I get some days that are much better, which gives me hope.

I would mention this to your doc though. Wishing you better days.

[Dizzy Dame]

Linda

You've got to get some help with this! Are you seeing a neurologist? I too have bouts of muscle weakness (mostly when I swallow and chew...some trouble breathing, nothing like you're having), and I'm going to see Dr. Chaudry at Johns Hopkins. He specializes in neuromuscular disorders and may just be able to help you. And you can stay with me if you come ( I live about 30 min from Baltimore).

Let me know if you're interested and I'll give you his number. You'll need your POTS doc to send over your medical records before they'll schedule an appointment with you though.

My thoughts and prayers are with you darling!

Hugs,

Lauren

[morgan617]

Have you had your Potassium checked? If I don't take it every day I paralyze and it gets worse and worse. Even on it, I am very weak all the time.

But you might ask the doctor about that. As far as exercise, my pt said I was too weak to work with. Yikes, that's bad when a pt says you're too weak

Anyway, I'd look into potassium levels for the paralysis (It does not have to be really low, it just has to flucuate a lot) and good luck with your pink weights! morgan

[dizzygirl]

thanks all!

Morgan I have been going thru my medical records as they are coming in.. and looking at my labs too, and I've noticed that my potasium levels are often low...though i havent seen any recent labs in he past 6 months I'd be interested to see what those show....

I also noticed that when my Heart rate is over 200bpm and my BP is 191 and higher that that is when my potassium is low.. I have an appointment with a new PCP On Monday.. poor doc I'm going to throw alot at him.. hopefully i dont scare him away!! Maybe I wont.. as he has treated my entire family (parents brother aunt and grandparents!) and let me tell ya we all come in with a wide range of odd complaints!

so hopefully they will take the stuff seriously

Lauren.. yes please do send me the phone number for this doc..!!talk about miracles.. I was just thinking when I got up this afternoon that maybe I should find a doc that treats just muslceproblems.. havent ben to a muscle doc yet.. my mom has been saying since I was a kid that she thinks that i have some weird freaky muscle disease..

thanks folks