Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Can someone tell me if this is normal. I have neurosarcoidosis just like all of you. I feel like I have no muscle strength. It doesn't feel like fatigue, at least i don' t think. It feels more like my muscles don't have any strength. I can't hold my arms up to dry my hair. It feels like the hair dryer is too heavy. Has anyone had this? Huggs TV dinner still cooling?Check out "Tonight's Picks" on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 , This happens to me with frequency. Right now I am on prednisone so things are better, but there have been times where my cup of coffee feels like it weighs 20 pounds. When I would sit it down I would bang it hard. So , there is my two cents worth. Terri G. > > Can someone tell me if this is normal. I have neurosarcoidosis just like all of you. I feel like I have no muscle strength. It doesn't feel like fatigue, at least i don' t think. It feels more like my muscles don't have any strength. I can't hold my arms up to dry my hair. It feels like the hair dryer is too heavy. Has anyone had this? > Huggs > > > > --------------------------------- > TV dinner still cooling? > Check out " Tonight's Picks " on Yahoo! TV. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 , I've had muscle weakness since the fatigue started 6+ years ago. It's gotten better over the years, but it's still a problem. The main reason I keep my hair short is because it was too hard to take care of when it was longer. Even now, if it takes more than 2-3 min. to blow my hair dry-ish (enough to get by!), I know it's time for a trim. It's frustrating, because doctors will do these strength tests where I have to push against their hand or whatever & I do okay. I keep telling them that they are testing the wrong things. Anything repetitive is hard, but do they have me push against them 10 times? No, hell no, to quote . Do they have me try to brush my teeth for 2 min. like the dentists advise? No, hell no! Do they have me raise my hands over my head for 2 minutes? You know the answer to that! Like I said, it's gotten better over the years, whether from the various treatments or just on its own. But it's still a problem. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: WEEK MUSCLESDate: Tue, 13 Mar 2007 16:14:05 -0700 (PDT) Can someone tell me if this is normal. I have neurosarcoidosis just like all of you. I feel like I have no muscle strength. It doesn't feel like fatigue, at least i don' t think. It feels more like my muscles don't have any strength. I can't hold my arms up to dry my hair. It feels like the hair dryer is too heavy. Has anyone had this? Huggs TV dinner still cooling?Check out "Tonight's Picks" on Yahoo! TV. Get a FREE Web site, company branded e-mail and more from Microsoft Office Live! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Haha Rose, the correct quote is, "Not only no but, HELL NO!" sorry I couldn't resist.. -- RE: WEEK MUSCLES , I've had muscle weakness since the fatigue started 6+ years ago. It's gotten better over the years, but it's still a problem. The main reason I keep my hair short is because it was too hard to take care of when it was longer. Even now, if it takes more than 2-3 min. to blow my hair dry-ish (enough to get by!), I know it's time for a trim. It's frustrating, because doctors will do these strength tests where I have to push against their hand or whatever & I do okay. I keep telling them that they are testing the wrong things. Anything repetitive is hard, but do they have me push against them 10 times? No, hell no, to quote . Do they have me try to brush my teeth for 2 min. like the dentists advise? No, hell no! Do they have me raise my hands over my head for 2 minutes? You know the answer to that! Like I said, it's gotten better over the years, whether from the various treatments or just on its own. But it's still a problem. Ramblin' Rose Moderator From: karen phillips <kap2569 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: WEEK MUSCLESDate: Tue, 13 Mar 2007 16:14:05 -0700 (PDT) Can someone tell me if this is normal. I have neurosarcoidosis just like all of you. I feel like I have no muscle strength. It doesn't feel like fatigue, at least i don' t think. It feels more like my muscles don't have any strength. I can't hold my arms up to dry my hair. It feels like the hair dryer is too heavy. Has anyone had this? Huggs TV dinner still cooling?Check out "Tonight's Picks" on Yahoo! TV. Get a FREE Web site, company branded e-mail and more from Microsoft Office Live! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 , I work out in the gym whenever possible to keep myself strong. I figure the better shape & the stronger my body, the better I'll deal with the flare. I can usually tell when a flare is on the way as the weight & repetitions I can handle begin to drop off considerably, often by more than 1/2 of normal. If the flare is really bad, like the last one, it's difficult to do much of anything let alone workout without wearing myself out for a couple of days. Fortunately, the flares have only reached this level 3-4 times in the past 15 years. Hope that helps. Stay well...hugs back at ya, Tony > > Can someone tell me if this is normal. I have neurosarcoidosis just like all of you. I feel like I have no muscle strength. It doesn't feel like fatigue, at least i don' t think. It feels more like my muscles don't have any strength. I can't hold my arms up to dry my hair. It feels like the hair dryer is too heavy. Has anyone had this? > Huggs > > > > --------------------------------- > TV dinner still cooling? > Check out " Tonight's Picks " on Yahoo! TV. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 , I feel the same as you. I feel like i have some energy but when I try to use it I get muscle reactions. Pain or weakness where I have even dropped things. Like things as light as a paintbrush(the small kind). Then I know it's time to stop what I'm doing and take a break. I dye my hair and sometimes I let it go too long between dyings (...real attractive!) because I hate the thought of lifting my arms up so long to do the back of my hair...of which my hairdresser said I was missing spots. Oh well... we do the best we can. Sometimes I feel like I have more energy and then I start something and BANG! I wish I had paced myself more and took it more cautiously. I try to use my hair-straightener and I feel like I want my arms cut off by the time I'm done. I have had alot of 'knots' in my arms. ...quite painful at times, too. I even have to lay in bed to put makeup on...which isn't too often. If I go to the doc he needs to see me as I usually am...or else they say that I'm looking good. Kindof starts me out on the wrong foot if I want them to believe I feel like shit. ...lol. Happy St. Pat's day to all who have abit of Irish in ye or wish ya had! hugs from a irish lass A. Solbergkaren phillips wrote: Can someone tell me if this is normal. I have neurosarcoidosis just like all of you. I feel like I have no muscle strength. It doesn't feel like fatigue, at least i don' t think. It feels more like my muscles don't have any strength. I can't hold my arms up to dry my hair. It feels like the hair dryer is too heavy. Has anyone had this? Huggs TV dinner still cooling?Check out "Tonight's Picks" on Yahoo! TV. Sucker-punch spam with award-winning protection. Try the free Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 : I sure do understand, muscle weakness has been a problem for me for years now. When I first saw my neurologist, he checked for weakness and said everything looked great. " Great!? " I was confused and angry all at once, nothing was great, I dropped things all the time, working over my head was nearly impossible as my arms got too weak to hold themselves up,morning routinely saw my legs too weak to go up and down stairs as I got ready for work, how could things be 'great'? He then took the itme to explain that it wasn't easy for him to see my weakness as I was a strong guy, then I saw the true picture. All my life I have been the strongest guy in the room, even when I was a skinny kid I could lift things easily that most older men could only struggle to scoot along, I just never really thoought about it much, it came so naturally. So, it took years of deterioration before the docs saw the weakness that troubled me for so long, but it was just this last summer that I saw how much it has worsened, and becAME aware that I can no longer 'power' my way through like I have done for so long, even though it would hurt for the days after whatever activity I was doing. I was helping my friend move into a new home with his family, and lifted a small table that five years ago wouldn't even have been a thought, my wife naturally was telling me to stop, but since I had never listened before there was no real reason to listen this time, that was until I had taken approx. three steps and nearly collasped from the strain. The table nearly slammed onto the ground, fortunatly I was able to stop the valuable antique from being damaged, and I was forced by my own damned body to sit down and shake fromt he strain and weakness for quite awhiel! Now, for me the question is no longer how bad is the muscle weakness, I am all too aware of the answer, the question now is just how many other things is this damdable disease going to steal from me, and how long can I keep those I care about from seeing what is really happening by forcing myself through no matter what? That one keeps me up at night. Anyway, hope you get to feeling better, just know there are plenty of us out ther that truly understand, and are praying ofr you. Stu > > Can someone tell me if this is normal. I have neurosarcoidosis just like all of you. I feel like I have no muscle strength. It doesn't feel like fatigue, at least i don' t think. It feels more like my muscles don't have any strength. I can't hold my arms up to dry my hair. It feels like the hair dryer is too heavy. Has anyone had this? > Huggs > > > > --------------------------------- > TV dinner still cooling? > Check out " Tonight's Picks " on Yahoo! TV. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 Gee Stu, are you a writer of sorts? When you describe events I can see it play out right before my eyes. Even that story about the girls dancing in the rain. As for telling others what's going on...are they ready to hear? A little info at a time is my best suggestion. Too much at once is overwhelming. It's like teaching a class. You start with the basics and when they have mastered that info, then you can give them more. Often we can be in denial ourselves so I guess we have to teach ourselves at the same time. I'm in the process of trying to simplify the bills for my husband and then i am going to explain my system(if he even uses it) when and if he needs to do the bills himself. I even told him he could have all my painting/art supplies if he wants a hobby to fill his time when I'm gone and he's still adjusting. In a way, by doing that, he could still feel close to me. He seemed to consider the idea for now. I just give him this info matter of factly cuz I could just as well die crossing the street, too. In a way, I think we are lucky to have this time to plan for the future while at the same time still trying to live a full life as much as possible right now. My life is still very full even though I am in constant pain and ,yes, taking showers daily sitting on a med chair in the shower. What a godsend that was! My wheelchair is also a godsend. So are my meds. It's all in our outlook isn't it?.... Live, laugh and love. hugs S. ps It's an American view to power through life...I think that's why there's so much stress and not enough joy. pacing yourself should not only be for the sick... jmolizzyandstu wrote: :I sure do understand, muscle weakness has been a problem for me foryears now. When I first saw my neurologist, he checked for weaknessand said everything looked great. "Great!?" I was confused and angryall at once, nothing was great, I dropped things all the time, workingover my head was nearly impossible as my arms got too weak to holdthemselves up,morning routinely saw my legs too weak to go up and downstairs as I got ready for work, how could things be 'great'? He thentook the itme to explain that it wasn't easy for him to see myweakness as I was a strong guy, then I saw the true picture. All mylife I have been the strongest guy in the room, even when I was askinny kid I could lift things easily that most older men could onlystruggle to scoot along, I just never really thoought about it much,it came so naturally. So, it took years of deterioration before thedocs saw the weakness that troubled me for so long, but it was justthis last summer that I saw how much it has worsened, and becAME awarethat I can no longer 'power' my way through like I have done for solong, even though it would hurt for the days after whatever activity Iwas doing. I was helping my friend move into a new home with his family, andlifted a small table that five years ago wouldn't even have been athought, my wife naturally was telling me to stop, but since I hadnever listened before there was no real reason to listen this time,that was until I had taken approx. three steps and nearly collaspedfrom the strain. The table nearly slammed onto the ground, fortunatlyI was able to stop the valuable antique from being damaged, and I wasforced by my own damned body to sit down and shake fromt he strain andweakness for quite awhiel! Now, for me the question is no longer how bad is the muscle weakness,I am all too aware of the answer, the question now is just how manyother things is this damdable disease going to steal from me, and howlong can I keep those I care about from seeing what is reallyhappening by forcing myself through no matter what? That one keeps meup at night.Anyway, hope you get to feeling better, just know there are plenty ofus out ther that truly understand, and are praying ofr you.Stu>> Can someone tell me if this is normal. I have neurosarcoidosis justlike all of you. I feel like I have no muscle strength. It doesn'tfeel like fatigue, at least i don' t think. It feels more like mymuscles don't have any strength. I can't hold my arms up to dry myhair. It feels like the hair dryer is too heavy. Has anyone had this?> Huggs> > > > ---------------------------------> TV dinner still cooling?> Check out "Tonight's Picks" on Yahoo! TV.> Don't get soaked. Take a quick peek at the forecast with theYahoo! Search weather shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 I have the same issue. I used to style my hair so it was "just so". Now I can barely make it thru getting the hair almost dry- not even completely- because of having to hold my arms up with the blow dryer. I have to sit in a chair in front of my bureau mirror and sometimes prop my elbow up on the arm of the chair to hold up the dryer. It feels likes it weighs 50 lbs., doesn't it? Then I let part of it air-dry. And as Rose had mentioned the makeup which I used to apply "just so" too and every day. I just slap it on now in 2 mins. and only on days that I am going someplace in public. That doesn't count doctors, pharmacies, etc. We know how you feel, its the weekness and fatigue in our bodies. Hang in there, Debbie T. Co-Moderator n phillips wrote: Can someone tell me if this is normal. I have neurosarcoidosis just like all of you. I feel like I have no muscle strength. It doesn't feel like fatigue, at least i don' t think. It feels more like my muscles don't have any strength. I can't hold my arms up to dry my hair. It feels like the hair dryer is too heavy. Has anyone had this? Huggs TV dinner still cooling?Check out "Tonight's Picks" on Yahoo! TV. Get your own web address. Have a HUGE year through Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
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