RSD and Major Flare Up Days
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RSD and Major Flare Up Days
byrd45 Mon Jan 05, 2009 7:01 pm
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From: byrd45 (Original Message) Sent: 8/18/2005 8:30 AM
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 5/17/2005 9:13 AM
Hi Everybody,
I thought this weeks discussion could focus on RSD and our flare days. RSD let's face it is just horrible and nasty everyday of the week; however we still all have our flare days. These to me are the bottom of the barrel worst moments that all of us are experiencing,or have experienced. These are the days that I call my payment days. In other words I overdid it the day before and now my RSD instead of its normal nasty self is what we all like to call a flare or flare-up. Yes I find it real easy to talk about this today since for the past two days I am smack in the middle of a bad flare period.You might be thinking well what did you do and in my case it was as simple as stress and being in the car as a passenger. Car rides longer than 20 minutes are really bad news for me and especially if I have days back to back riding in the car. Unfortunately I had no choice and I am paying the consequences. My flare up usually last about 1-4 days and then I am back to my basic levels with my RSD (with my meds of course, I can't imagine without how bad things would be) which are anywhere from a 6-9 pain level. I have noticed that my symptoms during a flare remind me of having the flu. On these days I even run a low grade temperature too. That is normal for alot of us to have a temperature during this time. In my experience I get extremely nauseous, pain levels 9-10 and above,headache, and simply getting up to move at all is a challenge. Some flares I break out in a rash or my hands or legs or face turn fiery red.This is the worst time for all of us. I literally want to pass out for awhile so I don't have to be conscious,but sleep isn't usually an option.Finding a distraction if only for a little while is helpful, and that is why I am doing this post! Thank you all for helping me by being my distraction.One thing I would suggest that can help is to periodically get up and walk even if you are feeling terrible. Rest is good but too much bed rest can actually make a flare worse. It like alot of things to do with RSD is a balancing act. If you are in a flare or not and would like to comment on major flares and RSD please add your comments to this post. I look forward to hearing from you as always.
Love,
Robyn
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From: byrd45 Sent: 8/18/2005 8:31 AM
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From: <NOBR>Littlelizzy2131</NOBR> Sent: 5/17/2005 1:09 PM
Robyn,
I am so sorry you are having such a bad time. I am also having a flare up and I am bed ridden. I don't know why. The weather, a 45 min car ride, or stress. Or maybe all of them. Maybe you can watch a funny movie or read a book. I read a book by Elena Juris called Positive Options for RSD and it has good suggestions on distractions. Although I know it is hard to do anything sometimes. Do you watch the Ellen Degenerse show? She makes me laugh everyday. Anyway, I hope you feel better. And I will say a prayer for you.
Lizbeth
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From: <NOBR>fireislandlady</NOBR> Sent: 5/17/2005 2:52 PM
Hi Robyn,
I hope you are feeling better. Since I only have had RSD for 6 months, and at a constant pain level of 7-9, I haven't had too many flare ups. I guess I didn't know I was having flare ups, but last week I had a busy day & the next day I couldn't get out of bed. Everything was hurting & all I did was sleep. My head was also foggy & I was out of it, if you know what I mean. I couldn't figure out what was wrong with me. Now I know what you mean by flare ups. Can't tell you again how much this website has helped me understand what is happening to my body.
Thanks again for being there
Terry
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From: <NOBR>lsr4t9</NOBR> Sent: 5/17/2005 4:10 PM
Robyn,
I always like a hug but when someone has RSD that is not always a good idea so here is my hug to you. Hope you can feel it in spirit. My best friend will call me and tell me she is giving me a hug. Somehow it makes me feel a little better and gives me a smile during a flare. If only a moment it takes away some pain. Hope you have less pain tomorrow, Linda
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From: <NOBR>byrd45</NOBR> Sent: 5/18/2005 4:38 PM
Hi Lizbeth,
I am so sorry you are having a flare up too! It really does stink! Believe it or not any of those things or the combination could have done it to you. I have been enjoying a great book which I am almost done by Nora Roberts. I love her books,Stephen King, Janet Evanovich(her books are hysterical),and a few others and just about anything that looks interesting. I am an avid reader over the years but even more now since RSD has entered my life. I think it helps to keep my mind active. Even though at times I have problems concentrating where I keep reading the same part over and then not remembering what I read. I plant my heels and stick with it anyway. I will have to look for that book the next time I am at the bookstore.LOL I just got done watching the Ellen Degenerus show! I love it too. She had Kirsty Ali on today and a comedian I love and can't believe her name escapes me ARGH!!! I hate when my brain short circuits like that. Anyway, it is a fun show to watch. I hope you are feeling a little better real soon! My prayers and thoughts are with you too.
Love,
Robyn
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From: <NOBR>byrd45</NOBR> Sent: 5/18/2005 4:53 PM
Hi Terry,
I am starting to come around the bend,but I won't be in the car until this weekend if I can swing it. I just want it to settle down some, but today is definitely better than yesterday and the day before. I didn't realize what was happening to me at first either and didn't realize how many of us go through flare ups until I starting talking to other people with RSD. I am glad my site is helping you understand what is going on with your body. It takes alot of the fear away knowing what is happening to you don't it. That is the way I look at it anyhow. I look back to the first year I had RSD and realize if I had more information back then maybe I wouldn't have felt like I was losing my mind and so alone. That is what pushed me to start this site and reach out to other people with RSD and chronic pain. We deserve the answers that are out there! This disease has enough negative impact on us and the lack of information for doctors and patients is intolerable. I hope someday when someone is diagnosed the doctor will know what they are looking at, know how to treat it,and the patients deserve pamphlets and information as well. I was just told this is what you have and we want to do a treatment right away. That was after going through seven other doctors first who just weren't sure what was going on or couldn't agree on the same diagnosis. Anyway things are starting to come around when it comes to awareness and change takes time.
Love,
Robyn
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From: <NOBR>byrd45</NOBR> Sent: 5/18/2005 5:04 PM
Hi Linda,
So you were the one who tapped me on the shoulder earlier lol. Thanks I can always use a hug! Here is one for you! You did make me smile and thank you so much. You are right that it does really help get us through. I am lucky that my family understands that when I say is grilled cheese okay for dinner everybody says sure. They know that when I feel like this that is about all I can muster up in the kitchen. Thank God they are so understanding. Well tonight is hotdogs, french fries, and beans and that is okay with them too. When things get really horrible we order in or hubby gets to cook or we warm up left overs. I used to cook big meals every night and I still do when I can, but that just isn't our reality any more and it isn't the end of the world either. I would get really upset when I couldn't handle cooking like I used to or other things that before I was sick I took for granted. I've learned that some days we have to work within our limits and on others can push ourselves a little more. It truly is a balancing act day to day.
Love,
Robyn
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From: byrd45 (Original Message) Sent: 8/18/2005 8:30 AM
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Recommend Delete Message 1 of 7 in Discussion
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 5/17/2005 9:13 AM
Hi Everybody,
I thought this weeks discussion could focus on RSD and our flare days. RSD let's face it is just horrible and nasty everyday of the week; however we still all have our flare days. These to me are the bottom of the barrel worst moments that all of us are experiencing,or have experienced. These are the days that I call my payment days. In other words I overdid it the day before and now my RSD instead of its normal nasty self is what we all like to call a flare or flare-up. Yes I find it real easy to talk about this today since for the past two days I am smack in the middle of a bad flare period.You might be thinking well what did you do and in my case it was as simple as stress and being in the car as a passenger. Car rides longer than 20 minutes are really bad news for me and especially if I have days back to back riding in the car. Unfortunately I had no choice and I am paying the consequences. My flare up usually last about 1-4 days and then I am back to my basic levels with my RSD (with my meds of course, I can't imagine without how bad things would be) which are anywhere from a 6-9 pain level. I have noticed that my symptoms during a flare remind me of having the flu. On these days I even run a low grade temperature too. That is normal for alot of us to have a temperature during this time. In my experience I get extremely nauseous, pain levels 9-10 and above,headache, and simply getting up to move at all is a challenge. Some flares I break out in a rash or my hands or legs or face turn fiery red.This is the worst time for all of us. I literally want to pass out for awhile so I don't have to be conscious,but sleep isn't usually an option.Finding a distraction if only for a little while is helpful, and that is why I am doing this post! Thank you all for helping me by being my distraction.One thing I would suggest that can help is to periodically get up and walk even if you are feeling terrible. Rest is good but too much bed rest can actually make a flare worse. It like alot of things to do with RSD is a balancing act. If you are in a flare or not and would like to comment on major flares and RSD please add your comments to this post. I look forward to hearing from you as always.
Love,
Robyn
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From: byrd45 Sent: 8/18/2005 8:31 AM
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From: <NOBR>Littlelizzy2131</NOBR> Sent: 5/17/2005 1:09 PM
Robyn,
I am so sorry you are having such a bad time. I am also having a flare up and I am bed ridden. I don't know why. The weather, a 45 min car ride, or stress. Or maybe all of them. Maybe you can watch a funny movie or read a book. I read a book by Elena Juris called Positive Options for RSD and it has good suggestions on distractions. Although I know it is hard to do anything sometimes. Do you watch the Ellen Degenerse show? She makes me laugh everyday. Anyway, I hope you feel better. And I will say a prayer for you.
Lizbeth
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From: <NOBR>fireislandlady</NOBR> Sent: 5/17/2005 2:52 PM
Hi Robyn,
I hope you are feeling better. Since I only have had RSD for 6 months, and at a constant pain level of 7-9, I haven't had too many flare ups. I guess I didn't know I was having flare ups, but last week I had a busy day & the next day I couldn't get out of bed. Everything was hurting & all I did was sleep. My head was also foggy & I was out of it, if you know what I mean. I couldn't figure out what was wrong with me. Now I know what you mean by flare ups. Can't tell you again how much this website has helped me understand what is happening to my body.
Thanks again for being there
Terry
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Recommend Delete Message 4 of 7 in Discussion
From: <NOBR>lsr4t9</NOBR> Sent: 5/17/2005 4:10 PM
Robyn,
I always like a hug but when someone has RSD that is not always a good idea so here is my hug to you. Hope you can feel it in spirit. My best friend will call me and tell me she is giving me a hug. Somehow it makes me feel a little better and gives me a smile during a flare. If only a moment it takes away some pain. Hope you have less pain tomorrow, Linda
Reply
Recommend Delete Message 5 of 7 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 5/18/2005 4:38 PM
Hi Lizbeth,
I am so sorry you are having a flare up too! It really does stink! Believe it or not any of those things or the combination could have done it to you. I have been enjoying a great book which I am almost done by Nora Roberts. I love her books,Stephen King, Janet Evanovich(her books are hysterical),and a few others and just about anything that looks interesting. I am an avid reader over the years but even more now since RSD has entered my life. I think it helps to keep my mind active. Even though at times I have problems concentrating where I keep reading the same part over and then not remembering what I read. I plant my heels and stick with it anyway. I will have to look for that book the next time I am at the bookstore.LOL I just got done watching the Ellen Degenerus show! I love it too. She had Kirsty Ali on today and a comedian I love and can't believe her name escapes me ARGH!!! I hate when my brain short circuits like that. Anyway, it is a fun show to watch. I hope you are feeling a little better real soon! My prayers and thoughts are with you too.
Love,
Robyn
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Recommend Delete Message 6 of 7 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 5/18/2005 4:53 PM
Hi Terry,
I am starting to come around the bend,but I won't be in the car until this weekend if I can swing it. I just want it to settle down some, but today is definitely better than yesterday and the day before. I didn't realize what was happening to me at first either and didn't realize how many of us go through flare ups until I starting talking to other people with RSD. I am glad my site is helping you understand what is going on with your body. It takes alot of the fear away knowing what is happening to you don't it. That is the way I look at it anyhow. I look back to the first year I had RSD and realize if I had more information back then maybe I wouldn't have felt like I was losing my mind and so alone. That is what pushed me to start this site and reach out to other people with RSD and chronic pain. We deserve the answers that are out there! This disease has enough negative impact on us and the lack of information for doctors and patients is intolerable. I hope someday when someone is diagnosed the doctor will know what they are looking at, know how to treat it,and the patients deserve pamphlets and information as well. I was just told this is what you have and we want to do a treatment right away. That was after going through seven other doctors first who just weren't sure what was going on or couldn't agree on the same diagnosis. Anyway things are starting to come around when it comes to awareness and change takes time.
Love,
Robyn
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Recommend Delete Message 7 of 7 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 5/18/2005 5:04 PM
Hi Linda,
So you were the one who tapped me on the shoulder earlier lol. Thanks I can always use a hug! Here is one for you! You did make me smile and thank you so much. You are right that it does really help get us through. I am lucky that my family understands that when I say is grilled cheese okay for dinner everybody says sure. They know that when I feel like this that is about all I can muster up in the kitchen. Thank God they are so understanding. Well tonight is hotdogs, french fries, and beans and that is okay with them too. When things get really horrible we order in or hubby gets to cook or we warm up left overs. I used to cook big meals every night and I still do when I can, but that just isn't our reality any more and it isn't the end of the world either. I would get really upset when I couldn't handle cooking like I used to or other things that before I was sick I took for granted. I've learned that some days we have to work within our limits and on others can push ourselves a little more. It truly is a balancing act day to day.
Love,
Robyn
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