Anyone Else Get Really Severe Muscle Fatigue?

[all4family]

Please forgive me if it has been asked before. I'm just in so much pain, that I can barely stand up. I feel like I weigh as much as an elephant, even though my weight is falling off of me right now. I am thinking that this severe muscle pain is what is causing the shortness of breath I feel, and the chest pain. I feel like I have been carrying a house on my back for a week. It's everywhere, in my legs, hips, arms, chest, neck, you get the idea I'm sure. I've had this many times before, in fact it has laid me up in bed for a long time more then once. I am just wondering if this is a POTS thing? When I walk from the bed to the bathroom It takes me a long time, and It is really hard getting up and down. Any advice on what to do for someone who pills make matters worse? I am afraid I am headed for a long stretch of being laid up . Thank you all in advance.

Suzy

[ajw4790]

Hiya!

Yeah, I get this, sometimes more than others. Severe, debilitating, muscle weakness and fatigue. It is part of POTS/dysautonomia. It is a side effect of all the things that are going "wrong". I think a lot of it is due to decreased blood and oxygenation to muscles. I think that there are also many other things going on...

It has been discussed before, I wouldn't know where to start really, but you can try some searches on the topic.

But, yeah I have this- where every, single, movement, takes precise concentration and extraordinary effort to accomplish it. And the man, my arm feels like it weighs a ton, so I can't put up my hair or do anything overhead.

AND, my favorite... Where you feel so incredibly heavy that it is exhausting and extremely uncomfortable, and all you want to do is lay flat, and get to the lowest elevation possible. So, if in bed it may not be enough, and have to crawl down to floor and make self as flat as a pancake. If upstairs may feel very uncomfortable until go downstairs to lay on floor. Meanwhile laying on lowest level floor you are wishing you had the energy and ability to get even deeper (and closer to earths gravitational pull at its core), and dig your very own POTS HOLE! Sometimes I feel like gravity is winning so much that it makes me want to get to the absolutely lowest place on earth. It is the weirdest feeling! And incredibly uncomfortable!!!!

[babettess]

Hi Suzy,

Yep, I feel like that every now and then. My arms and legs feel like they weigh a ton each and it is hard just to lift them. I really do think that this has gotten a little better since I started taking Vitamin D, though. The constant chest pain I had has been gone since about 3 weeks after starting the supplement.

Have you ever been tested for Fibromyalgia? I have it and I always thought that it was what caused me to feel that way. Can you tolerate a small heating pad on the worst areas? Heat does help my pain. I use a small heating pad that I made myself that I heat in the microwave. Mine is filled with shelled corn. You can make a quick one by putting plain rice in a tube sock and tieing a knot in the end. Then just put it in the microwave and start out with about thiry seconds time and increase it slowly until the rice is hot. I'm not bothered so much by this heat because it covers such a small area.

Hang in there. I know you are having a rough time now. Take care of yourself. You're still in my thoughts and prayers, and I'm sure a lot of other peoples, too.

Babette

[all4family]

Hi AJW,

Yes! I totally get the getting as low as you can! I will be on the bed, and just kind of roll to the floor, and when I ride in a car like this I absolutly have to lay down. I can't lift my head for very long. In fact as I am typing now the only way I am doing it is with my head down, and I ocassionally lift it to make sure my hands are still in the right place. It's a good thing I have a laptop. The pain just gets to be unbearable. I have been trying to sleep more, because I figure sleep will help my muscles heal, but the pain is really hard to fall asleep through. I tried taking a hot bath, but couldn't get comfortable in the tub.

I haven't combed my hair in 3 days, and I don't even care. I will pay my kids to do it tonight, unless my husband gets back early enough.

Thank you for sharing that. It seems we have just so many symptoms. That is very reassuring to know I am not alone.

Suzy

[all4family]

Thank you so much Babette, you are such a kind person. I am vitamin D deffecient to the degree that I have secondary hypoparathyroidism. I was taking over the counter pills, because they gave me 50,000 ius, and I just didn't want to have a problem. I also got a medical tanning bed, that is used for psoriasis and such. That is really encouraging that this has helped you. Maybe I can increase my dose.

Thank you for the prayers, you are in mine too. Take care,

Suzy

[mjan]

Hi AJW,

Yes! I totally get the getting as low as you can! I will be on the bed, and just kind of roll to the floor, and when I ride in a car like this I absolutly have to lay down. I can't lift my head for very long. In fact as I am typing now the only way I am doing it is with my head down, and I ocassionally lift it to make sure my hands are still in the right place. It's a good thing I have a laptop. The pain just gets to be unbearable. I have been trying to sleep more, because I figure sleep will help my muscles heal, but the pain is really hard to fall asleep through. I tried taking a hot bath, but couldn't get comfortable in the tub.

I haven't combed my hair in 3 days, and I don't even care. I will pay my kids to do it tonight, unless my husband gets back early enough.

Thank you for sharing that. It seems we have just so many symptoms. That is very reassuring to know I am not alone.

Suzy

You type with your head down? Man that makes me soo sad...{{{HUGS}}}

YOu sound so toxic. YES I remember when I would have to leave work after trying to take short "power" naps to go on. I was so fatigued I could not longer hold my head up.

I went to the amazing nutritionist..remember? He DETOXED me safely (mercury alone over 2 times) and BUILT UP my system.

Its almost like whatever you eat/breathe/drink is soooo toxic it INFLAMMES every cell. !! INFLAMMATION HURTS!!! ANd it messes Up our BRAINS and its functioning BIG TIME. IT just makes everything WORSE.

When I simply STRETCH now.. my arm/shoulders hurts for days ..weeks..months..JUST FROM STRETCHING over my head etc.

I cannot afford this nutritionist right now as I am still seeing specialists (3) and need to pay for their eval/testing.

Gee Suzy I wish you could get a specialized eval like I did..you'd be amazed as to what they find and how they can eliminate so much inflammation/toxins.

You know I am here for you.

Jan

[bjt22]

the muscle fatigue/weakness is amongst my worst symptoms. When I read a book, I have to do so lying down with pillows to prop up my book for me as I don't have the strength to hold it on my own. And yup...hair combing is a big deal, too. I don't have pain, the tremors/shakiness go along with this for me. I will say that Mestinon has helped a little with these symptoms. I can at least carry my own purse now when I get out of the house.

[ramakentesh]

Ever had eye lid lag?

[potsgirl]

sometimes i really feel like i'm walking through a pool of water...my legs feel like they weigh a thousand pounds each! I'm so sorry you're going through this, Suzy. You've been going through such a rough time. I hope you're feeling better soon.

My best,

Jana

[janiedelite]

Suzy, I'm so sorry. Your post sounds so pitiful. I can picture you typing with your head down. Poor thing!

I don't know that I can give you any helpful advice. I've never been in quite the situation you're in. The heavy fatigue I experience sounds like yours, to a lesser degree. I tell my hubby it feels like I'm moving through molasses or quicksand. I always feel it to some degree, but some days are much worse than others. For me, it's associated with overdoing things and getting too warm (a biggie). I almost always notice an improvement when I put on my abdominal binder for compression. If the temp is above 71 F, I'll put on my cooling vest and notice an immediate improvement. When I'm super sluggish, Shawn will get me some egg drop soup from our local chinese place and the salt also immediately helps. I understand not being able to take meds. I don't have the inability to metabolize drugs you have, but the traditional POTS meds make me worse.

I hope you can "keep you chin up" on the inside... Janie

[Guest tearose]

Goodness yes. There are times, especially in the winter, I feel like several angels push me out of bed and then help me drag my body to the kitchen to get started!! The air so cold and I am so weak.

[pat57]

I told my MD about having heavy legs when walking up the steps, he said it was a sign of Low BP.

good luck..........

[all4family]

Hi Everyone, what a great group you all are. It deffinatly sounds like I am not alone with the heavy thing. That is so reasurring to me. I just woke up for my second time today, and it's almost 1 in the afternoon!! I feel a little better after all that sleep.

Jan, thanks so much for the hugs. Yes I do believe with all the drugs I took in the beginning that I am toxic. I am sure there are a lot of things that my body just doesn't process. That is why I get so sick around certain things. I wish I could go to a doctor like that, but I don't think I could afford to. Like you I have other doctors, and co-pays etc. that I have to deal with. I have a juicer, and have read a lot on juice detoxing, and might (if I can ever get my kitchen back in one piece.) give that a shot. I also worry about the "natural" things, because I had a really bad reaction to some holistic thing a holistic doctor gave me. What was the name of the thing you did? I will look it up again. I didn't get very far the first time. Thank you, and take care.

bjt22, Sorry you are also experiencing this. I have to ask who carries your purse for you? My husband will for me.....gotta love him!!! It is so hard to carry anything, when you can't even carry yourself! And you know what ever happened to the messy look for hair?? I sure am trying to bring it back!! Thank you for sharing that with me.

Ramakentesh, I had something like I want to say nystagmis, but I don't think that is right on my last neuro exam. No one has ever mentioned that to me, although I have a lot of eye troubles. Sometimes my eyes just kind of don't want to open very wide. Is that what you mean by that???

Jana, that is a very good description of how it feels like walking through water. I feel like I will just smack the ground at any second. And I hate things moving besides me. Wheather something is moving besides me or the motion from me moving. Thanks for the support.

Janie, thank you. You are so sweet. I sure am longing for the days just about 2 weeks ago when I thought I was getting better. I wonder if an abdominal binder would help me. When I stand I feel like all my energy is in the middle staying balanced, and when I walk it takes a lot of energy. I at first didn't think I experienced pooling, because I didn't know what it looked like, but as I have read on here I realise I pool a lot. And may I say mmmmmmm....I love chinese food! My favorite is mongolian beef. But my hubby doesn't like chinese so we rarely eat it. That and I don't eat beef anymore.... but if I did I'd order it delivered!! You made me smile with the chin up on the inside. I've got it up with friends like you!

Tearose, what would we do without our angels?!! That is such a sweet thought! Everytime I get out of bed now I'm going to have to thank the angels for helping me. Sorry you experience this too. Take care.

Pat57, that is very interesting, because I get such wild fluctuations in my b/p. Sometimes it is really high, and sometimes it is really low. But I tried an experiment at home trying to see the difference I got between standing, and sitting, or laying, and when I took it laying down it was in a normal to high range, and when I stood up I couldn't get a reading after 10 try's I got 65/37 I think it was, so I thought (this was before I knew about POTS, I was just trying to find out the differnce, because I thought that standing was a problem for me.) No that can't be right, so I took it again, and it was almost the same, then I couldn't take it anymore. Then I would get a really high one. But for the most part standing I can get no b/p, and the times that I have fainted the medics can't get one either, then when they can it is high. OK. I just rambled a bunch, and I am so sorry. I tend to think outloud when I can think. Anyways thank you for telling me that, and if anyone knows why this is please let me know.

Thank you all for your support. I don't know what I would do without this group. It has made dealing with this not a living nightmare. And the people on this group are truly compasionate. You all are the angels! Thank you. Thank you!

Hugs

Suzy

[ramakentesh]

The eye lid lag I was talking about is where the muscles of the eye lids become weak and wont hold up your eye lids.

I had this really bad when i first got POTS. No explanation has ever been given, but it often occurs in M.gravis and it also occurs in this condition:

http://en.wikipedia.org/wiki/Dopamine_beta...lase_deficiency

This is a form of postural hypotension caused by low levels of norepinephrine.

[all4family]

Ramakentesh,

I definatly would have eyelid lag then. I have pictures of me looking drunk, and I was always like that because I couldn't get my eyes open very far. I don't have it as bad now, but I do get it when feeling real bad, like now. I will have to look into that with the Graves disease. I think that my doctor ruled it out, but you never can tell. I also have had a off test with maybe it was cortisol, but that isn't the same. Thank you for the information I will look further into it.

Suzy

[bjt22]

I get ptosis (sp?) when I have cluster headaches. It goes along with that whole syndrome of symptoms. Otherwise, no eye lid lad. I've actually thought about MG since the response I've had from mestinon. I don't think that's my problem, though, as I can often relate escalating weakness to being upright. It's there when I'm not, but the longer I am, the worse it gets.