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Is it weakness or is it fatigue?


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So - I am in a flare and bedbound right now. Usually the reason I am in bed is the OI and fatigue. Fatigue usually - to me - means no energy, feeling drained. This time in addition to the OI and fatigue I feel more like I PHYSICALLY cannot move without effort - I guess weakness. This is a new symptoms for me. Do many of you experience weakness with flares or just fatigue?  

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If the flare is bad enough then yes I do experience muscle weakness as well as fatigue - it feels like I am stuck in treacle and I am forcing myself to move though it.  The first couple of weeks with this Covid flare I was extremely weak as well as tired.  All my muscles seemed to be much weaker -  there were days I could barely lift a glass of water without massive effort , the glass felt twice as heavy as it actually was.  I wonder if it's a case of not enough oxygenated blood circulating to supply muscles with what they need to work properly.  For me it does fade away as the flare subsides - hopefully you will find the same....

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I get weakness, especially in the front of my thighs. I'll start out pretty good some days and then my knees will start to buckle. I can feel it start to happen so at worst I just slowly collapse to the floor/ground. When this happens I sometimes have to lie there and build up enough strength to get up. In all cases rest makes it better, eventually and in the moment. It just feels like my muscles won't go anymore. My arms may eventually become weak but usually they do better than my legs. There's nothing I can do to make them go in the moment. It's very much like myasthenia gravis.  I have not been diagnosed with MG but have had ocular MG for decades. 

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Weakness in the sense that I feel like I'm wearing clothes that weight 100 pounds with such an incredible ache it becomes very difficult to even lift my arms. But yes, this is a frequent symptom that comes with exhaustion. 

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Oh @PistolI am sorry that you are flaring. I also get weakness when I flare badly enough. I have been flaring lately, not just dys but also my autoimmune disease and have had a lot of weakness, joint pain etc. I think it’s partly the weather that’s doing it. Hang in there. Sending good thoughts your way.

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@Pistol- Oh, that's not good.  I'm so sorry you are feeling so poorly!  It's miserable!  Yes, both of my girls get that way when they are worse.  Weakness usually comes with a bad flare and typically it's in the wintertime.  For my oldest, we just found out that she's low in ferritin and just started receiving iron infusions.  So, hoping that is the culprit this time for her weakness and lightheadedness.  Have you had your blood checked recently?  This was a routine appointment for my daughter and definitely were surprised with her blood levels.  I have to remind myself that everything isn't always POTS...usually, but not always.  I hope you get to feeling better soon!!!

 

@toomanyproblems- I couldn't help but think of my youngest daughter as you were describing how your legs and arms act, being heavy and it getting worse as the day goes on.  My daughter had these exact symptoms (arms were always better than her legs, too), only they got severe and by the end of the day her legs would buckle and she would fall....sometimes 30 times from afternoon until she went to bed!  Did quite a bit of research and discovered that she has Dopa Responsive Dystonia.  It's rare (of course!) and is treated with Sinemet (carbidopa/levodopa) in very low doses.  It's the same med that is used to treat Parkinson's but in huge doses (you don't want that!).  We have a very receptive neurologist who, when I brought a medical journal article in by Dr. Claude Hamonet, he agreed that she should give the Sinemet a try.  It was like night and day.  By the second dose, she wasn't falling at all.  He saw her in-office shortly after starting it and paraded her around to all of the nurses and doctors and showed them how well she walked, like a fashion runway model!  It was just heartwarming!

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3 hours ago, DizzyGirls said:

Have you had your blood checked recently?

Yes @DizzyGirls - my recent CBC showed low RBC's, low WBC's, high monos ( all signs of inflammation ) and anemia. I am on an iron supplement now and scheduled for more labs next week. 

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On 2/17/2021 at 6:36 AM, Pistol said:

So - I am in a flare and bedbound right now. Usually the reason I am in bed is the OI and fatigue. Fatigue usually - to me - means no energy, feeling drained. This time in addition to the OI and fatigue I feel more like I PHYSICALLY cannot move without effort - I guess weakness. This is a new symptoms for me. Do many of you experience weakness with flares or just fatigue?  

I  am so sorry you are in a flare.  Sometimes I have a hard time lifting my arms or my head.   This happens to me in the morning even on days when I am healthy.  I just feel like it's too much work to move and that happens sometimes even when my brain is wide awake.  I often listen to audiobooks at that time as that's a way to do something without requiring any energy.  This feeling fades away, sometimes after drinking water, other times after falling asleep and waking up again. When I am in a flare it takes a few days.   Feel better soon

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