Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 The vision thing!? Ironically, I just went 2 weeks ago to have my vision tested! I feel like " I'm not seeing properly " . I can't yet find a correct way to describe it. I was given a prescrition for glasses as my Optomitrist sayes I have astigmatism (sp?) and that may be what is causing my visual distrubances? I haven't found that my glasses have helped to rectify the situation though. I too have chest congestion...I could hear myself wheasing last night. I woke myself up! My chest x-rays have been clear though. I had a really bad fever and body pains, malaise (this has been constant), knee and ankle " stiffness " for the last week or so...I have 2 new spots now as of wednesday! I can " feel " a flare starting way before I get any new bumps. Does anyone else notice this too? I don't know if I can even call it a " flare " as I've never really been remitted > >Reply-To: erythema_nodosum_Group >To: erythema_nodosum_Group >Subject: Re: Malaise >Date: Fri, 11 Feb 2005 04:49:08 -0000 > > >Dear Ian and Group, > >Malaise is French for " unwell " . It is pretty hard to define in >English. It makes me feel worn out and listless. I can just about make >it to the bed and hide under the covers until it passes. Sometimes my >vision seems affected too, as in " who turned out the lights? " That >might be part of the fever that can go along with malaise. > >I too don't have much trouble with the lumps. If they are located in a >good position between the knee and ankle, they are less likely to feel >painful. If my leg is kept elevated and doesn't swell, the lump stays >more contained. Once the lumps swells and spreads to a larger area and >gets red and hot, I am pretty much out of commission. > >To treat lumps I elevate and use the support stocking. To treat >malaise I just sleep it off. > >Does anyone experience a bit of difficulty breathing when they have a >flare up? I'm talking about those wihout sarc. Is it possible to have >a " touch of sarc. " ? It feels like congestion and goes away when the EN >leg lumps do. Strange, huh? No always, just sometimes. > >Yet I never feel joint pain or the full body tendonitis M and others >experience. So many differences. No wonder doctors have trouble >understanding this. > >We'll figure it out eventually ;-) > >Love, > > > > > > > > > > > > > > _________________________________________________________________ Scan and help eliminate destructive viruses from your inbound and outbound e-mail and attachments. http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://\ hotmail.com/enca & HL=Market_MSNIS_Taglines Start enjoying all the benefits of MSN® Premium right now and get the first two months FREE*. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 The vision thing!? Ironically, I just went 2 weeks ago to have my vision tested! I feel like " I'm not seeing properly " . I can't yet find a correct way to describe it. I was given a prescrition for glasses as my Optomitrist sayes I have astigmatism (sp?) and that may be what is causing my visual distrubances? I haven't found that my glasses have helped to rectify the situation though. I too have chest congestion...I could hear myself wheasing last night. I woke myself up! My chest x-rays have been clear though. I had a really bad fever and body pains, malaise (this has been constant), knee and ankle " stiffness " for the last week or so...I have 2 new spots now as of wednesday! I can " feel " a flare starting way before I get any new bumps. Does anyone else notice this too? I don't know if I can even call it a " flare " as I've never really been remitted > >Reply-To: erythema_nodosum_Group >To: erythema_nodosum_Group >Subject: Re: Malaise >Date: Fri, 11 Feb 2005 04:49:08 -0000 > > >Dear Ian and Group, > >Malaise is French for " unwell " . It is pretty hard to define in >English. It makes me feel worn out and listless. I can just about make >it to the bed and hide under the covers until it passes. Sometimes my >vision seems affected too, as in " who turned out the lights? " That >might be part of the fever that can go along with malaise. > >I too don't have much trouble with the lumps. If they are located in a >good position between the knee and ankle, they are less likely to feel >painful. If my leg is kept elevated and doesn't swell, the lump stays >more contained. Once the lumps swells and spreads to a larger area and >gets red and hot, I am pretty much out of commission. > >To treat lumps I elevate and use the support stocking. To treat >malaise I just sleep it off. > >Does anyone experience a bit of difficulty breathing when they have a >flare up? I'm talking about those wihout sarc. Is it possible to have >a " touch of sarc. " ? It feels like congestion and goes away when the EN >leg lumps do. Strange, huh? No always, just sometimes. > >Yet I never feel joint pain or the full body tendonitis M and others >experience. So many differences. No wonder doctors have trouble >understanding this. > >We'll figure it out eventually ;-) > >Love, > > > > > > > > > > > > > > _________________________________________________________________ Scan and help eliminate destructive viruses from your inbound and outbound e-mail and attachments. http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://\ hotmail.com/enca & HL=Market_MSNIS_Taglines Start enjoying all the benefits of MSN® Premium right now and get the first two months FREE*. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 , You absolutely just described me!! I thought at one point I too was having hot flashes! lol! I would wake up at night soaked in sweat. My hair was literally wet! Holly > >Reply-To: erythema_nodosum_Group >To: erythema_nodosum_Group >Subject: Re: Malaise >Date: Fri, 11 Feb 2005 12:01:41 -0000 > > > > >Malaise feel worn out and listless: YES. > >my vision seems affected too: DRY EYES only when the malaise hits. > >Fevers: YES I have been to the point now where I am not always sure if it >is EN fever or Hot Flash. > >Does anyone experience a bit of difficulty breathing when they have a >flare up? It feels like congestion and goes away when the EN >leg lumps do: YES this could explain why even though I quit smoking >3+ years ago I am still having what I would call the withdrawal cough >especialy first thing in the mornings. > >I am so tired of being tired! > > > > _________________________________________________________________ Designer Mail isn't just fun to send, it's fun to receive. Use special stationery, fonts and colors. http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://\ hotmail.com/enca & HL=Market_MSNIS_Taglines Start enjoying all the benefits of MSN® Premium right now and get the first two months FREE*. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 , You absolutely just described me!! I thought at one point I too was having hot flashes! lol! I would wake up at night soaked in sweat. My hair was literally wet! Holly > >Reply-To: erythema_nodosum_Group >To: erythema_nodosum_Group >Subject: Re: Malaise >Date: Fri, 11 Feb 2005 12:01:41 -0000 > > > > >Malaise feel worn out and listless: YES. > >my vision seems affected too: DRY EYES only when the malaise hits. > >Fevers: YES I have been to the point now where I am not always sure if it >is EN fever or Hot Flash. > >Does anyone experience a bit of difficulty breathing when they have a >flare up? It feels like congestion and goes away when the EN >leg lumps do: YES this could explain why even though I quit smoking >3+ years ago I am still having what I would call the withdrawal cough >especialy first thing in the mornings. > >I am so tired of being tired! > > > > _________________________________________________________________ Designer Mail isn't just fun to send, it's fun to receive. Use special stationery, fonts and colors. http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://\ hotmail.com/enca & HL=Market_MSNIS_Taglines Start enjoying all the benefits of MSN® Premium right now and get the first two months FREE*. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 , You absolutely just described me!! I thought at one point I too was having hot flashes! lol! I would wake up at night soaked in sweat. My hair was literally wet! Holly Hey Holly, May be we have been having EN fevers all along? What do ya think? I am not too sure since they feel the same... both hot and both wet.. Jul? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 Hi Group Does anyone else here suffer from the never relenting malaise with their EN? I've yet to ever really go into a remission. I've CONSTANTLY had new nodules appear since last August and the malaise that comes with them makes me feel like I've been run over. I just cannot keep this up. I got a call today from my clinic and they've made the refferal to a Dermy. My appointment is for August 16th! Long time to go yet, huh? I just feel so guilty cause I can't keep it up anymore. I'm soooooooooooooo tired. My arms feel too heavy, my legs hurt if I move too quick. I HATE THIS! My oldest daughter (she's 6) has a gymnastics meet tonight, but I really can't take her. I'm dragging my @## today. None of my children (they're 6, 5 and 23 months) know that I'm " sick " . I don't want to hurt her by not taking her, but there is no other option. If I don't take her, she doesn't go as it is at the YMCA one town over. EN IS affecting EVERY aspect of my life. Sorry I'm such a whinner today. Holly _________________________________________________________________ MSN® Calendar keeps you organized and takes the effort out of scheduling get-togethers. http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://\ hotmail.com/enca & HL=Market_MSNIS_Taglines Start enjoying all the benefits of MSN® Premium right now and get the first two months FREE*. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 Holly, I can relate. Call the dermo and ask if they have a cancelation list. Also, find out when they do their call list so you can call them around that time and see if there has been any cancelations. Might help get you in a little sooner. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 Holly, I completely relate to what you're going through! My legs have been swollen and painful so badly I can't keep up. I feel like I've been hit by a truck almost all the time now! Just keep your chin up hon and only do what you can do. You say your children don't know you're sick hon, but kids are so perceptive, they know more than you think they know. They pick up on things. I had a talk with my kids when I first started getting sick and explained to them that sometimes mommy just isn't going to be able to do the things she use to. They're older now (11, 11, and 15) and they understand how it is. I hope you get to feeling closer to " normal " real soon. Hugs, Andi > Hi Group > > Does anyone else here suffer from the never relenting malaise with their EN? > I've yet to ever really go into a remission. I've CONSTANTLY had new > nodules appear since last August and the malaise that comes with them makes > me feel like I've been run over. I just cannot keep this up. I got a call > today from my clinic and they've made the refferal to a Dermy. My > appointment is for August 16th! Long time to go yet, huh? I just feel so > guilty cause I can't keep it up anymore. I'm soooooooooooooo tired. My > arms feel too heavy, my legs hurt if I move too quick. I HATE THIS! My > oldest daughter (she's 6) has a gymnastics meet tonight, but I really can't > take her. I'm dragging my @## today. None of my children (they're 6, 5 and > 23 months) know that I'm " sick " . I don't want to hurt her by not taking > her, but there is no other option. If I don't take her, she doesn't go as > it is at the YMCA one town over. EN IS affecting EVERY aspect of my life. > Sorry I'm such a whinner today. > > > Holly > > _________________________________________________________________ > MSN® Calendar keeps you organized and takes the effort out of scheduling > get-togethers. > http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://\ hotmail.com/enca & HL=Market_MSNIS_Taglines > Start enjoying all the benefits of MSN® Premium right now and get the > first two months FREE*. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Andi Thanks so much for your reply. It helps knowing that we're not in this alone. You're right about kids sensing things. I'm sure they know, I've just never formally told them. Holly > _________________________________________________________________ Don't just Search. Find! http://search.sympatico.msn.ca/default.aspx The new MSN Search! Check it out! Quote Link to comment Share on other sites More sharing options...
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