Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 It's been so quiet around here lately... For those who read my other post I am in the process of being diagnosed for narcolepsy (fun!) and am having a very difficult time staying awake. On top of it managing pain and muscle knots/issues that stem from central sensitization syndrome (kinda like fibro) and I don't know how much more I can take! Here is the deal though.. although 5 physicians have said that my pain meds have nothing to do with narcolepsy - everyone is blaming it on my pain medication! I have a history of narcoleptic behavior and misdiagnosis apparently. I was sort of expecting this... but it's so frustrating. On top of that all of a sudden my parents and people close to me want to know WHEN the TC pain will end?!! So.. my dear TC friends- when does the TC pain end? Does it ever? I am a 7-8 depending on the day, if I don't take my meds. I will not be able to sit down on a chair or lie down if I did not have these pills.. and yet people can't seem to grasp this! Ironically I blame my parents, because as I had severe back pain I was called lazy, and to stop investigating my pain and to get on with my life! Just venting.. but if you have any tips they would be appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2011 Report Share Posted August 4, 2011 Hello : Sorry to hear you're going through all that you are, especially with your family & the on-going frustration you've faced. Unfortunately, TC pain can stick around for a life time. Mine comes in cycles, and thus far I've kept mine at bay for the most part, for the last 6 months. I notice stress exacerbates it greatly -- and so I do everything I can not to let it escalate. As far as your family .. blaming someone's pain on laziness or seeing it as an excuse .. is just their way I find of living with their own guilt and fear. I don't even engage or argue with my family about this anymore -- I don't let them " own " my pain -- I am very clear with them about why I have it and let them know if they cannot support me -- I will not, feed into their own drama. If they must go on living in their own drama rama, so be it -- but I won't be a party to it. Not letting this kind of negative energy into my life has helped immensely. It's not without sacrifice though, as it's lonely at times -- but I in return have surrounded with friends and family who do love and support me and what I'm going through. I hope this helps. Sending love and understanding. ox > > It's been so quiet around here lately... > For those who read my other post I am in the process of being diagnosed for narcolepsy (fun!) and am having a very difficult time staying awake. On top of it managing pain and muscle knots/issues that stem from central sensitization syndrome (kinda like fibro) and I don't know how much more I can take! > Here is the deal though.. although 5 physicians have said that my pain meds have nothing to do with narcolepsy - everyone is blaming it on my pain medication! I have a history of narcoleptic behavior and misdiagnosis apparently. I was sort of expecting this... but it's so frustrating. On top of that all of a sudden my parents and people close to me want to know WHEN the TC pain will end?!! > So.. my dear TC friends- when does the TC pain end? Does it ever? I am a 7-8 depending on the day, if I don't take my meds. I will not be able to sit down on a chair or lie down if I did not have these pills.. and yet people can't seem to grasp this! > Ironically I blame my parents, because as I had severe back pain I was called lazy, and to stop investigating my pain and to get on with my life! > Just venting.. but if you have any tips they would be appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2011 Report Share Posted August 5, 2011 Wow .. thank you That helped a lot Subject: Re: Pain and Family issues To: tetheredspinalcord Date: Thursday, August 4, 2011, 12:22 PM  Hello : Sorry to hear you're going through all that you are, especially with your family & the on-going frustration you've faced. Unfortunately, TC pain can stick around for a life time. Mine comes in cycles, and thus far I've kept mine at bay for the most part, for the last 6 months. I notice stress exacerbates it greatly -- and so I do everything I can not to let it escalate. As far as your family .. blaming someone's pain on laziness or seeing it as an excuse .. is just their way I find of living with their own guilt and fear. I don't even engage or argue with my family about this anymore -- I don't let them " own " my pain -- I am very clear with them about why I have it and let them know if they cannot support me -- I will not, feed into their own drama. If they must go on living in their own drama rama, so be it -- but I won't be a party to it. Not letting this kind of negative energy into my life has helped immensely. It's not without sacrifice though, as it's lonely at times -- but I in return have surrounded with friends and family who do love and support me and what I'm going through. I hope this helps. Sending love and understanding. ox > > It's been so quiet around here lately... > For those who read my other post I am in the process of being diagnosed for narcolepsy (fun!) and am having a very difficult time staying awake. On top of it managing pain and muscle knots/issues that stem from central sensitization syndrome  (kinda like fibro) and I don't know how much more I can take! > Here is the deal though.. although 5 physicians have said that my pain meds have nothing to do with narcolepsy - everyone is blaming it on my pain medication! I have a history of narcoleptic behavior and misdiagnosis apparently.  I was sort of expecting this... but it's so frustrating. On top of that all of a sudden my parents and people close to me want to know WHEN the TC pain will end?!! > So.. my dear TC friends- when does the TC pain end? Does it ever? I am a 7-8 depending on the day, if I don't take my meds. I will not be able to sit down on a chair or lie down if I did not have these pills.. and yet people can't seem to grasp this! > Ironically I blame my parents, because as I had severe back pain I was called lazy, and to stop investigating my pain and to get on with my life! > Just venting.. but if you have any tips they would be appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2011 Report Share Posted August 11, 2011 , This is my first post to the group. I feel very connected to your story as I have my health conditions all of which have been diagnosed from mid 2006 to 1-2009. My main point is that I was diagnosed with Narcolepsy about 1 year prior to my tcs diagnosis. I believe u r correct in stating that it is not the pain meds that are making u so sleepy. In my case I am in so much pain from the tcs that the pain meds wake me up a bit. I did have to go off all medication for a week or so b4 I went in for an over night sleep test as well as a series of scheduled naps the next day. I was diagnosed just a few days later and put back on a medication called provigil which is used for Narcolepsy and for people who have frequent shift changes at work like from days to nights and back again. Hope I didn't go on to long, I know this is a group for tcs. I wish u luck. It took my family a few years to get use to the new me. My husband even commented one time that I needed to stop trying to diagnose myself with cancer. Tcs is not an easy diagnosis for most doctors and it took about 1 1/2 years for anyone to take me seriously. It is strange to grow up having had a very active childhood and young adulthood and to suddenly at age 25 find out u were born with a lifelasting condition. I've accepted who I have become but I still have bad days as I'm sure many of the members of this group can relate to. One additional question to any one in the group, does anyone have children with " special needs? " I ak because my daughter is 8yrs old and was born with a rare neurological disorder called Schizencephaly and Polymicrogyria. I am just wondering how others deal with the feelings of guilt for the health conditions we face as adults interfering with our ability to take care of our families in the fashion we dream to or need to. I didn't have a single health problem until just after the birth of my second child and now I beat myself up everyday because I can't be involved in my children lives the way I want/should be. My son is five and so far is perfectly healthy. > > > > > > It's been so quiet around here lately... > > > For those who read my other post I am in the process of being diagnosed for narcolepsy (fun!) and am having a very difficult time staying awake. On top of it managing pain and muscle knots/issues that stem from central sensitization syndrome  (kinda like fibro) and I don't know how much more I can take! > > > Here is the deal though.. although 5 physicians have said that my pain meds have nothing to do with narcolepsy - everyone is blaming it on my pain medication! I have a history of narcoleptic behavior and misdiagnosis apparently.  I was sort of expecting this... but it's so frustrating. On top of that all of a sudden my parents and people close to me want to know WHEN the TC pain will end?!! > > > So.. my dear TC friends- when does the TC pain end? Does it ever? I am a 7-8 depending on the day, if I don't take my meds. I will not be able to sit down on a chair or lie down if I did not have these pills.. and yet people can't seem to grasp this! > > > Ironically I blame my parents, because as I had severe back pain I was called lazy, and to stop investigating my pain and to get on with my life! > > > Just venting.. but if you have any tips they would be appreciated. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2011 Report Share Posted August 12, 2011 Hi, Well, I'm going to do another post, but I was diagnosed with narcolepsy yesterday. No question about it. I don't have any children, but I do understand a bit where you are coming from. When we got married last year I thought I had a simple pelvic issue, and all of a sudden I was dealing with TC. We want to have children soon, but I'm not sure how/when.My dad has stage 4 cancer, was diagnosed maybe 3 months before I was with TC. So the guilt is always there for me. I don't have any energy to drive out there some days, or when my pain was bad I couldn't spend more time with him. I think the only thing we can do is devote 100% of our energy to those people when we get to spend time with them. Quality not quantity you know? I hope you can contribute to my next post, would love to hear what your experience has been. Subject: Re: Pain and Family issues To: tetheredspinalcord Date: Thursday, August 11, 2011, 4:38 AM  , This is my first post to the group. I feel very connected to your story as I have my health conditions all of which have been diagnosed from mid 2006 to 1-2009. My main point is that I was diagnosed with Narcolepsy about 1 year prior to my tcs diagnosis. I believe u r correct in stating that it is not the pain meds that are making u so sleepy. In my case I am in so much pain from the tcs that the pain meds wake me up a bit. I did have to go off all medication for a week or so b4 I went in for an over night sleep test as well as a series of scheduled naps the next day. I was diagnosed just a few days later and put back on a medication called provigil which is used for Narcolepsy and for people who have frequent shift changes at work like from days to nights and back again. Hope I didn't go on to long, I know this is a group for tcs. I wish u luck. It took my family a few years to get use to the new me. My husband even commented one time that I needed to stop trying to diagnose myself with cancer. Tcs is not an easy diagnosis for most doctors and it took about 1 1/2 years for anyone to take me seriously. It is strange to grow up having had a very active childhood and young adulthood and to suddenly at age 25 find out u were born with a lifelasting condition. I've accepted who I have become but I still have bad days as I'm sure many of the members of this group can relate to. One additional question to any one in the group, does anyone have children with " special needs? " I ak because my daughter is 8yrs old and was born with a rare neurological disorder called Schizencephaly and Polymicrogyria. I am just wondering how others deal with the feelings of guilt for the health conditions we face as adults interfering with our ability to take care of our families in the fashion we dream to or need to. I didn't have a single health problem until just after the birth of my second child and now I beat myself up everyday because I can't be involved in my children lives the way I want/should be. My son is five and so far is perfectly healthy. > > > > > > It's been so quiet around here lately... > > > For those who read my other post I am in the process of being diagnosed for narcolepsy (fun!) and am having a very difficult time staying awake. On top of it managing pain and muscle knots/issues that stem from central sensitization syndrome  (kinda like fibro) and I don't know how much more I can take! > > > Here is the deal though.. although 5 physicians have said that my pain meds have nothing to do with narcolepsy - everyone is blaming it on my pain medication! I have a history of narcoleptic behavior and misdiagnosis apparently.  I was sort of expecting this... but it's so frustrating. On top of that all of a sudden my parents and people close to me want to know WHEN the TC pain will end?!! > > > So.. my dear TC friends- when does the TC pain end? Does it ever? I am a 7-8 depending on the day, if I don't take my meds. I will not be able to sit down on a chair or lie down if I did not have these pills.. and yet people can't seem to grasp this! > > > Ironically I blame my parents, because as I had severe back pain I was called lazy, and to stop investigating my pain and to get on with my life! > > > Just venting.. but if you have any tips they would be appreciated. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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