Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 Hi all, Just got involved about a week ago. Just been diagnosed about 9 months ago having some good days and some bad. Didn't realize there were so many with ACM never heard of it before. Just reading all of your E-mails helps. Thanks to all of you I don't feel so all alone . Hope to have surgery sometime in June. Hope I am doing the right thing but, it's really hard living with this . Tish , CA ACM1 7MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 Hi all, Just got involved about a week ago. Just been diagnosed about 9 months ago having some good days and some bad. Didn't realize there were so many with ACM never heard of it before. Just reading all of your E-mails helps. Thanks to all of you I don't feel so all alone . Hope to have surgery sometime in June. Hope I am doing the right thing but, it's really hard living with this . Tish , CA ACM1 7MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 Hi Tish, welcome, you are definitly not alone! We chiarians just keep crawling out of the woodwork! If you have any questions or just really bummed and need to talk there is always someone to listen. Take care, Laurie in Illinois Re: New to group > Hi all, > Just got involved about a week ago. Just been diagnosed about 9 months ago > having some good days and some bad. > Didn't realize there were so many with ACM never heard of it before. > Just reading all of your E-mails helps. Thanks to all of you I don't feel so > all alone . > Hope to have surgery sometime in June. Hope I am doing the right thing but, > it's really hard living with this . > > > Tish , CA > ACM1 7MM > > > > _________ > NOTE: NCC refers to posts with No Chiari Content > Unsubscribe Yourself: chiari-unsubscribeegroups > Technical Help: chiari-owneregroups > WACMA Home: www.pressenter.com/~wacma > WACMA List: www.eGroups.com/group/chiari > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 Hi Tish, welcome, you are definitly not alone! We chiarians just keep crawling out of the woodwork! If you have any questions or just really bummed and need to talk there is always someone to listen. Take care, Laurie in Illinois Re: New to group > Hi all, > Just got involved about a week ago. Just been diagnosed about 9 months ago > having some good days and some bad. > Didn't realize there were so many with ACM never heard of it before. > Just reading all of your E-mails helps. Thanks to all of you I don't feel so > all alone . > Hope to have surgery sometime in June. Hope I am doing the right thing but, > it's really hard living with this . > > > Tish , CA > ACM1 7MM > > > > _________ > NOTE: NCC refers to posts with No Chiari Content > Unsubscribe Yourself: chiari-unsubscribeegroups > Technical Help: chiari-owneregroups > WACMA Home: www.pressenter.com/~wacma > WACMA List: www.eGroups.com/group/chiari > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Hi Dianne; Welcome to the group. I know how difficult it can be not to have the support you so desperately need, as I have zero support out in the real world - my family and I are estranged, and my friends have drifted away - it is as though I no longer had them to begin with. It is very strange how FMS can wipe out your life - literally pull the rug right out from under you and you don't even see it coming. The nice weather is now here and I sit in my 2bdrm apartment, looking out the window and the 'inner' me wants to jump up and get dressed and rush out the door as I would have even three years ago - but it is almost as though I am paralyzed by this disease - trapped inside someone else's body - no matter how much I want to jump up and go out to do the things I once could - I am frozen and can not move without the constant reminder that I am now sick. I am 36y/o .. a single mother of a teenaged daughter - I watch her sometimes and think to myself of how things use to be for me, I wonder if her life will come to a crashing halt because of the surgery she had two years ago - if one day she will wake up and have her life stolen from her, as mine has been stolen from me. I have been diagnosed six years ago, though have suffered for nearly a decade now - with FMS-CFS/ME, RLS, Sciatica, PTSD, Depression, OA, OAB, Anxiety and Panic Attacks, etc etc etc. I can certainly identify with you about the memory loss - fibro-fog is very difficult for me - I have always been so 'sharp' and now I can barely remember what I did yesterday. It can be very depressing and also very scary. I am glad that you have found your way here, and that you have had the courage to join our group - I say this because I believe it takes a great amount of courage to join these types of support groups and admit that we need help - especially when we've spent our lives helping others and being the one that everyone depended upon. I believe you will find a wonderful group of ladies here, who hold a wealth of experience and knowledge - I have learned so much about this disease and its linking illnesses from support groups as this one - it is amazing to me how the medical community can maintain such a blind eye to what hundreds of thousands of people suffer with - world wide. I hope that you are able to find the support within our 'family' - I encourage you to take part in discussions, ask questions, share your experiences/fears/concerns ... vent .. whatever you need to do for you - and you will find that there is always someone who will reach out to you - and quite often they, too, have the same feelings. <warm hugs> Karis New to Group Hi. I am new to this group but having been reading the posts lately since I first found you guys on the Web. I tried a few of the suggestions I read and they have always been helpful. I am hoping to join this group because I honestly don't know how to deal with this disease. I don't often speak up about my problems, especially with my family out of town and friends locally. Not speaking up and making changes in the past has seriously cost me in the past with my jobs and relationships. No one knew my concerns so when I could not keep up, no one understood. My recent experience has been that most people I know, friends and medical professionals, have little understanding of what living with chronic pain is like. I know that I need support in my life for me as well as my trying to help others and I believe this group tries to do that for each other. I really have no one I talk to about this and so I feel like I am in uncharted territory alone. I am 52, I live in Pennsylvania, and I am an RN. I have always worked in the mental health field, first on inpatient units, then 10 years in a psych emergency room, then outpatient research with Alzheimer's Disease and 1st Episode Psychotic Patients. I then switched to working in the healthcare insurance field and worked my way up to management level. While doing all this, I focused on others and pushed my problems away until about 4 years ago when I struggled everyday to just get out of bed. I went on disability and lost my job when the work's short term disability ran out. Pennsylvania employers use the Family Medical Leave Act to their benefit and not for the employee who is ill. I have only been diagnosed with Fibro approx. 3 months ago and this was by a rheumatologist recommended by my PCP. But I have lived with chronic pain since about age 18 when I was hit by a car while crossing a street. Whenever it flared, I would blame the accident and the weather, stress, etc., and try to barrel my way through the day. Since then, though, I developed Crohn's Disease/Ulcerative Colitis and have had surgery twice, in 1977 and again 1986-to the point of receiving last rites in the days before the surgeries. After years of taking Predisone for that, I developed Osteoporosis (especially in the hips and lower back.) Add Menopause now to the picture and mix in a pretty bad depression about 3 years ago which I have not yet pulled out of. Over the years, I have had also the chronic pain and off the wall strange symptoms that now make sense after reading a bit on Fibro. The past 2 years, the pain has been everyday, mostly intense to extreme. I have most of the trigger points but especially in my neck, upper back, and just above the hips. I find it difficult to move about first thing in the morning and usually have to sit down to wait for the pain meds to kick in. I also become very frustrated by how forgetful I have become, when I can't find the car keys I just had, etc. I have been on so many meds over the years but mainly with the Crohn's Disease. I took Darvacet for pain as I could no longer take NSAIDs. For the muscle pain, I take Vicodan ES now but it does not work so great. The rheumatologist has given me Ultram but I don't think it helps at all. He had me double the dose to 300mg daily but now I have a continuous high pitched ringing in my ears and did not take the med today. I don't know why I would take it anyway if it does not help. I use lots of heating pads though and those OTC pain patches when I am very uncomfortable. I still have the Vicodan when I feel really bad but the rheumotologist seems to be against it. Now he wants to add Trazedone to my other antidepressants and I am not comfortable with it. I feel like a walking drugstore! I have run the gamut with the antidepressant meds and am now on Cymbalta in the AM and Zoloft in the PM. I also take Klonopin for anxiety and Restoril for sleep. My sleep is still very poor. Two nights ago, I slept about 2 hours and last night not at all-tired all the time anyway. My "housemate" has started to read some of the info out there on Fibro and has started to show some interest but this is sporadic-today he reminded me of our agreement that he would cut the grass this summer if I did the laundry! I just agreed because it seemed so dumb-I did our laundry yesterday and he ended up not cutting the grass anyway. Today I do not have the energy to do either or anything else. My only "R & R" seems to come really from my 4 cats, two boys about age 12 and two girls almost 2 years old. They give so much affection and seem to know when I do not feel well. I went to work a year ago for a dentist friend whom I had a relationship with, but this has been very difficult with so many more pitfalls than I could even imagine. He lives with me now but our relationship is totally platonic on my part as I just can't manage anything more. No comfortable at all! I wish I could have him just leave but then I lose my job, his financial contribution to household expenses, and the small amount of help he gives around the house. His job also gives me medical insurance with prescription coverage which I would hate to lose. I feel caught in a bind. I finally several months ago chose to speak up about my chronic pain and ask for help. I don't know where to take it now and don't know how to ask for help without feeling guilty-I'm the nurse who is supposed to be the helper. Sorry I ran on so long...thank you so much for this chance to talk about it. Dianne in PA 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Wow, Diane...your story is so familiar. I recently joined this group too and am hoping to learn more about fibro/treatment/qaulity of life issues. I think having someone to listen, understand, and validate is the key to feeling better mentally. I too am " stuck " in a living situation that is quite odd and am trying to find a way to be on my own. I live at my ex-husbands house so I can still care for my children. I have six and three are still at home. I lost my job, health insurance, apartment, and car to this past year of being so sick. I finally applied for SSDI per my rheumatologist and am waiting an appeal. I would much rather go back to work, though when even taking a shower becomes a huge event, I am not sure how to accomplish a job! Here's to finding some solutions and making a good day anyway. Trudy. > Hi. I am new to this group but having been reading the posts lately since I first found you guys on the Web. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Wow, Diane...your story is so familiar. I recently joined this group too and am hoping to learn more about fibro/treatment/qaulity of life issues. I think having someone to listen, understand, and validate is the key to feeling better mentally. I too am " stuck " in a living situation that is quite odd and am trying to find a way to be on my own. I live at my ex-husbands house so I can still care for my children. I have six and three are still at home. I lost my job, health insurance, apartment, and car to this past year of being so sick. I finally applied for SSDI per my rheumatologist and am waiting an appeal. I would much rather go back to work, though when even taking a shower becomes a huge event, I am not sure how to accomplish a job! Here's to finding some solutions and making a good day anyway. Trudy. > Hi. I am new to this group but having been reading the posts lately since I first found you guys on the Web. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Wow, Diane...your story is so familiar. I recently joined this group too and am hoping to learn more about fibro/treatment/qaulity of life issues. I think having someone to listen, understand, and validate is the key to feeling better mentally. I too am " stuck " in a living situation that is quite odd and am trying to find a way to be on my own. I live at my ex-husbands house so I can still care for my children. I have six and three are still at home. I lost my job, health insurance, apartment, and car to this past year of being so sick. I finally applied for SSDI per my rheumatologist and am waiting an appeal. I would much rather go back to work, though when even taking a shower becomes a huge event, I am not sure how to accomplish a job! Here's to finding some solutions and making a good day anyway. Trudy. > Hi. I am new to this group but having been reading the posts lately since I first found you guys on the Web. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 First welcome!!! I always am very sad to see another new member because that means someone else is hurting, and I'm sorry for that. I'm truly sorry for what you are going through, and I understand. I haven't been fired from my job, but was told not to come back until I was 100% because I was sick last year (and miserable from pain) and I had to leave for doctor's appointments, oh, and spent too much time in the bathroom. I had chronic diarrhea and they can't find out what the problem is. I work for a company that has about 8 employees. Therefore, I don't qualify for Family Leave or American with Disabilities. I had surgery in March and am collecting temp. disability, but I don't know for how long. I asked my boss specifically if I had a job to go back to... she said "Only if I was 100% better". I tried to explain that I would never be 100% better because I have a chronic illness. So be it. I collect my temp dis. and look for another job. In the meantime, I'm furious because I've been there for over 10 years. I will not let them know that I'm looking because if I do, they will cancel all benefits. Hon, you did not run on too long. It's hard to find people who truly understand and when you do, it all comes out, and that is why this is called a Support Group. And what would we do without our little fur-babies to comfort us. They know automatically when we don't feel well. I have 2 dogs.... Eddy..8or9 not sure which, and Jake 2 (both shelties); and 2 rescued cats Midnight.. about 10 or 11 (she came from the pound), and Koko (the hellion)....about 8 months old. He was found in the dumpster at work. I don't know about you,but they keep me sane... as sane as can be. Big Gentle Hugs to you, Tigger New to Group Hi. I am new to this group but having been reading the posts lately since I first found you guys on the Web. I tried a few of the suggestions I read and they have always been helpful. I am hoping to join this group because I honestly don't know how to deal with this disease. I don't often speak up about my problems, especially with my family out of town and friends locally. Not speaking up and making changes in the past has seriously cost me in the past with my jobs and relationships. No one knew my concerns so when I could not keep up, no one understood. My recent experience has been that most people I know, friends and medical professionals, have little understanding of what living with chronic pain is like. I know that I need support in my life for me as well as my trying to help others and I believe this group tries to do that for each other. I really have no one I talk to about this and so I feel like I am in uncharted territory alone. I am 52, I live in Pennsylvania, and I am an RN. I have always worked in the mental health field, first on inpatient units, then 10 years in a psych emergency room, then outpatient research with Alzheimer's Disease and 1st Episode Psychotic Patients. I then switched to working in the healthcare insurance field and worked my way up to management level. While doing all this, I focused on others and pushed my problems away until about 4 years ago when I struggled everyday to just get out of bed. I went on disability and lost my job when the work's short term disability ran out. Pennsylvania employers use the Family Medical Leave Act to their benefit and not for the employee who is ill. I have only been diagnosed with Fibro approx. 3 months ago and this was by a rheumatologist recommended by my PCP. But I have lived with chronic pain since about age 18 when I was hit by a car while crossing a street. Whenever it flared, I would blame the accident and the weather, stress, etc., and try to barrel my way through the day. Since then, though, I developed Crohn's Disease/Ulcerative Colitis and have had surgery twice, in 1977 and again 1986-to the point of receiving last rites in the days before the surgeries. After years of taking Predisone for that, I developed Osteoporosis (especially in the hips and lower back.) Add Menopause now to the picture and mix in a pretty bad depression about 3 years ago which I have not yet pulled out of. Over the years, I have had also the chronic pain and off the wall strange symptoms that now make sense after reading a bit on Fibro. The past 2 years, the pain has been everyday, mostly intense to extreme. I have most of the trigger points but especially in my neck, upper back, and just above the hips. I find it difficult to move about first thing in the morning and usually have to sit down to wait for the pain meds to kick in. I also become very frustrated by how forgetful I have become, when I can't find the car keys I just had, etc. I have been on so many meds over the years but mainly with the Crohn's Disease. I took Darvacet for pain as I could no longer take NSAIDs. For the muscle pain, I take Vicodan ES now but it does not work so great. The rheumatologist has given me Ultram but I don't think it helps at all. He had me double the dose to 300mg daily but now I have a continuous high pitched ringing in my ears and did not take the med today. I don't know why I would take it anyway if it does not help. I use lots of heating pads though and those OTC pain patches when I am very uncomfortable. I still have the Vicodan when I feel really bad but the rheumotologist seems to be against it. Now he wants to add Trazedone to my other antidepressants and I am not comfortable with it. I feel like a walking drugstore! I have run the gamut with the antidepressant meds and am now on Cymbalta in the AM and Zoloft in the PM. I also take Klonopin for anxiety and Restoril for sleep. My sleep is still very poor. Two nights ago, I slept about 2 hours and last night not at all-tired all the time anyway. My "housemate" has started to read some of the info out there on Fibro and has started to show some interest but this is sporadic-today he reminded me of our agreement that he would cut the grass this summer if I did the laundry! I just agreed because it seemed so dumb-I did our laundry yesterday and he ended up not cutting the grass anyway. Today I do not have the energy to do either or anything else. My only "R & R" seems to come really from my 4 cats, two boys about age 12 and two girls almost 2 years old. They give so much affection and seem to know when I do not feel well. I went to work a year ago for a dentist friend whom I had a relationship with, but this has been very difficult with so many more pitfalls than I could even imagine. He lives with me now but our relationship is totally platonic on my part as I just can't manage anything more. No comfortable at all! I wish I could have him just leave but then I lose my job, his financial contribution to household expenses, and the small amount of help he gives around the house. His job also gives me medical insurance with prescription coverage which I would hate to lose. I feel caught in a bind. I finally several months ago chose to speak up about my chronic pain and ask for help. I don't know where to take it now and don't know how to ask for help without feeling guilty-I'm the nurse who is supposed to be the helper. Sorry I ran on so long...thank you so much for this chance to talk about it. Dianne in PA 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Aloha Dianne, welcome to the family! it always amazes me to hear everyone's story - they're all so much like yours!! I'm one of the few here that really only has one debilitating condition (FMS). anyway, you sound like a real "trouper" and a martyr at the same time. I do understand the reasons for why you stay in the situation you're in, and i would probably do the same as long as everything remained "comfortable" enough. Does he ever question the plantonic-ness (is that a word?) of your relationship? Or does he just accept it the way it is? i have to admit, i have been dragging along an old flame for the very same reasons -- well, not exactly the same reasons - but, for the reason that i know that if anything truly horrible were to happen to me; he would be the ONLY one who would come to my "rescue". I do love the grouchy old anal-retentive GOAT in some demented way.... but admittedly: if I had a million dollars, i am not so sure i'd be in such close contact with him anymore. Sad, isn't it? i call it SURVIVAL. anyway, glad you decided to join up and start sharing about yourself! alooooooooooha! jaaaaaaaaana New to Group Hi. I am new to this group but having been reading the posts lately since I first found you guys on the Web. I tried a few of the suggestions I read and they have always been helpful. I am hoping to join this group because I honestly don't know how to deal with this disease. I don't often speak up about my problems, especially with my family out of town and friends locally. Not speaking up and making changes in the past has seriously cost me in the past with my jobs and relationships. No one knew my concerns so when I could not keep up, no one understood. My recent experience has been that most people I know, friends and medical professionals, have little understanding of what living with chronic pain is like. I know that I need support in my life for me as well as my trying to help others and I believe this group tries to do that for each other. I really have no one I talk to about this and so I feel like I am in uncharted territory alone. I am 52, I live in Pennsylvania, and I am an RN. I have always worked in the mental health field, first on inpatient units, then 10 years in a psych emergency room, then outpatient research with Alzheimer's Disease and 1st Episode Psychotic Patients. I then switched to working in the healthcare insurance field and worked my way up to management level. While doing all this, I focused on others and pushed my problems away until about 4 years ago when I struggled everyday to just get out of bed. I went on disability and lost my job when the work's short term disability ran out. Pennsylvania employers use the Family Medical Leave Act to their benefit and not for the employee who is ill. I have only been diagnosed with Fibro approx. 3 months ago and this was by a rheumatologist recommended by my PCP. But I have lived with chronic pain since about age 18 when I was hit by a car while crossing a street. Whenever it flared, I would blame the accident and the weather, stress, etc., and try to barrel my way through the day. Since then, though, I developed Crohn's Disease/Ulcerative Colitis and have had surgery twice, in 1977 and again 1986-to the point of receiving last rites in the days before the surgeries. After years of taking Predisone for that, I developed Osteoporosis (especially in the hips and lower back.) Add Menopause now to the picture and mix in a pretty bad depression about 3 years ago which I have not yet pulled out of. Over the years, I have had also the chronic pain and off the wall strange symptoms that now make sense after reading a bit on Fibro. The past 2 years, the pain has been everyday, mostly intense to extreme. I have most of the trigger points but especially in my neck, upper back, and just above the hips. I find it difficult to move about first thing in the morning and usually have to sit down to wait for the pain meds to kick in. I also become very frustrated by how forgetful I have become, when I can't find the car keys I just had, etc. I have been on so many meds over the years but mainly with the Crohn's Disease. I took Darvacet for pain as I could no longer take NSAIDs. For the muscle pain, I take Vicodan ES now but it does not work so great. The rheumatologist has given me Ultram but I don't think it helps at all. He had me double the dose to 300mg daily but now I have a continuous high pitched ringing in my ears and did not take the med today. I don't know why I would take it anyway if it does not help. I use lots of heating pads though and those OTC pain patches when I am very uncomfortable. I still have the Vicodan when I feel really bad but the rheumotologist seems to be against it. Now he wants to add Trazedone to my other antidepressants and I am not comfortable with it. I feel like a walking drugstore! I have run the gamut with the antidepressant meds and am now on Cymbalta in the AM and Zoloft in the PM. I also take Klonopin for anxiety and Restoril for sleep. My sleep is still very poor. Two nights ago, I slept about 2 hours and last night not at all-tired all the time anyway. My "housemate" has started to read some of the info out there on Fibro and has started to show some interest but this is sporadic-today he reminded me of our agreement that he would cut the grass this summer if I did the laundry! I just agreed because it seemed so dumb-I did our laundry yesterday and he ended up not cutting the grass anyway. Today I do not have the energy to do either or anything else. My only "R & R" seems to come really from my 4 cats, two boys about age 12 and two girls almost 2 years old. They give so much affection and seem to know when I do not feel well. I went to work a year ago for a dentist friend whom I had a relationship with, but this has been very difficult with so many more pitfalls than I could even imagine. He lives with me now but our relationship is totally platonic on my part as I just can't manage anything more. No comfortable at all! I wish I could have him just leave but then I lose my job, his financial contribution to household expenses, and the small amount of help he gives around the house. His job also gives me medical insurance with prescription coverage which I would hate to lose. I feel caught in a bind. I finally several months ago chose to speak up about my chronic pain and ask for help. I don't know where to take it now and don't know how to ask for help without feeling guilty-I'm the nurse who is supposed to be the helper. Sorry I ran on so long...thank you so much for this chance to talk about it. Dianne in PA 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 And we still love you! Tigger New to Group Hi. I am new to this group but having been reading the posts lately since I first found you guys on the Web. I tried a few of the suggestions I read and they have always been helpful. I am hoping to join this group because I honestly don't know how to deal with this disease. I don't often speak up about my problems, especially with my family out of town and friends locally. Not speaking up and making changes in the past has seriously cost me in the past with my jobs and relationships. No one knew my concerns so when I could not keep up, no one understood. My recent experience has been that most people I know, friends and medical professionals, have little understanding of what living with chronic pain is like. I know that I need support in my life for me as well as my trying to help others and I believe this group tries to do that for each other. I really have no one I talk to about this and so I feel like I am in uncharted territory alone. I am 52, I live in Pennsylvania, and I am an RN. I have always worked in the mental health field, first on inpatient units, then 10 years in a psych emergency room, then outpatient research with Alzheimer's Disease and 1st Episode Psychotic Patients. I then switched to working in the healthcare insurance field and worked my way up to management level. While doing all this, I focused on others and pushed my problems away until about 4 years ago when I struggled everyday to just get out of bed. I went on disability and lost my job when the work's short term disability ran out. Pennsylvania employers use the Family Medical Leave Act to their benefit and not for the employee who is ill. I have only been diagnosed with Fibro approx. 3 months ago and this was by a rheumatologist recommended by my PCP. But I have lived with chronic pain since about age 18 when I was hit by a car while crossing a street. Whenever it flared, I would blame the accident and the weather, stress, etc., and try to barrel my way through the day. Since then, though, I developed Crohn's Disease/Ulcerative Colitis and have had surgery twice, in 1977 and again 1986-to the point of receiving last rites in the days before the surgeries. After years of taking Predisone for that, I developed Osteoporosis (especially in the hips and lower back.) Add Menopause now to the picture and mix in a pretty bad depression about 3 years ago which I have not yet pulled out of. Over the years, I have had also the chronic pain and off the wall strange symptoms that now make sense after reading a bit on Fibro. The past 2 years, the pain has been everyday, mostly intense to extreme. I have most of the trigger points but especially in my neck, upper back, and just above the hips. I find it difficult to move about first thing in the morning and usually have to sit down to wait for the pain meds to kick in. I also become very frustrated by how forgetful I have become, when I can't find the car keys I just had, etc. I have been on so many meds over the years but mainly with the Crohn's Disease. I took Darvacet for pain as I could no longer take NSAIDs. For the muscle pain, I take Vicodan ES now but it does not work so great. The rheumatologist has given me Ultram but I don't think it helps at all. He had me double the dose to 300mg daily but now I have a continuous high pitched ringing in my ears and did not take the med today. I don't know why I would take it anyway if it does not help. I use lots of heating pads though and those OTC pain patches when I am very uncomfortable. I still have the Vicodan when I feel really bad but the rheumotologist seems to be against it. Now he wants to add Trazedone to my other antidepressants and I am not comfortable with it. I feel like a walking drugstore! I have run the gamut with the antidepressant meds and am now on Cymbalta in the AM and Zoloft in the PM. I also take Klonopin for anxiety and Restoril for sleep. My sleep is still very poor. Two nights ago, I slept about 2 hours and last night not at all-tired all the time anyway. My "housemate" has started to read some of the info out there on Fibro and has started to show some interest but this is sporadic-today he reminded me of our agreement that he would cut the grass this summer if I did the laundry! I just agreed because it seemed so dumb-I did our laundry yesterday and he ended up not cutting the grass anyway. Today I do not have the energy to do either or anything else. My only "R & R" seems to come really from my 4 cats, two boys about age 12 and two girls almost 2 years old. They give so much affection and seem to know when I do not feel well. I went to work a year ago for a dentist friend whom I had a relationship with, but this has been very difficult with so many more pitfalls than I could even imagine. He lives with me now but our relationship is totally platonic on my part as I just can't manage anything more. No comfortable at all! I wish I could have him just leave but then I lose my job, his financial contribution to household expenses, and the small amount of help he gives around the house. His job also gives me medical insurance with prescription coverage which I would hate to lose. I feel caught in a bind. I finally several months ago chose to speak up about my chronic pain and ask for help. I don't know where to take it now and don't know how to ask for help without feeling guilty-I'm the nurse who is supposed to be the helper. Sorry I ran on so long...thank you so much for this chance to talk about it. Dianne in PA 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. 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Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 huggggggs you!! Karis New to Group Hi. I am new to this group but having been reading the posts lately since I first found you guys on the Web. I tried a few of the suggestions I read and they have always been helpful. I am hoping to join this group because I honestly don't know how to deal with this disease. I don't often speak up about my problems, especially with my family out of town and friends locally. Not speaking up and making changes in the past has seriously cost me in the past with my jobs and relationships. No one knew my concerns so when I could not keep up, no one understood. My recent experience has been that most people I know, friends and medical professionals, have little understanding of what living with chronic pain is like. I know that I need support in my life for me as well as my trying to help others and I believe this group tries to do that for each other. I really have no one I talk to about this and so I feel like I am in uncharted territory alone. I am 52, I live in Pennsylvania, and I am an RN. I have always worked in the mental health field, first on inpatient units, then 10 years in a psych emergency room, then outpatient research with Alzheimer's Disease and 1st Episode Psychotic Patients. I then switched to working in the healthcare insurance field and worked my way up to management level. While doing all this, I focused on others and pushed my problems away until about 4 years ago when I struggled everyday to just get out of bed. I went on disability and lost my job when the work's short term disability ran out. Pennsylvania employers use the Family Medical Leave Act to their benefit and not for the employee who is ill. I have only been diagnosed with Fibro approx. 3 months ago and this was by a rheumatologist recommended by my PCP. But I have lived with chronic pain since about age 18 when I was hit by a car while crossing a street. Whenever it flared, I would blame the accident and the weather, stress, etc., and try to barrel my way through the day. Since then, though, I developed Crohn's Disease/Ulcerative Colitis and have had surgery twice, in 1977 and again 1986-to the point of receiving last rites in the days before the surgeries. After years of taking Predisone for that, I developed Osteoporosis (especially in the hips and lower back.) Add Menopause now to the picture and mix in a pretty bad depression about 3 years ago which I have not yet pulled out of. Over the years, I have had also the chronic pain and off the wall strange symptoms that now make sense after reading a bit on Fibro. The past 2 years, the pain has been everyday, mostly intense to extreme. I have most of the trigger points but especially in my neck, upper back, and just above the hips. I find it difficult to move about first thing in the morning and usually have to sit down to wait for the pain meds to kick in. I also become very frustrated by how forgetful I have become, when I can't find the car keys I just had, etc. I have been on so many meds over the years but mainly with the Crohn's Disease. I took Darvacet for pain as I could no longer take NSAIDs. For the muscle pain, I take Vicodan ES now but it does not work so great. The rheumatologist has given me Ultram but I don't think it helps at all. He had me double the dose to 300mg daily but now I have a continuous high pitched ringing in my ears and did not take the med today. I don't know why I would take it anyway if it does not help. I use lots of heating pads though and those OTC pain patches when I am very uncomfortable. I still have the Vicodan when I feel really bad but the rheumotologist seems to be against it. Now he wants to add Trazedone to my other antidepressants and I am not comfortable with it. I feel like a walking drugstore! I have run the gamut with the antidepressant meds and am now on Cymbalta in the AM and Zoloft in the PM. I also take Klonopin for anxiety and Restoril for sleep. My sleep is still very poor. Two nights ago, I slept about 2 hours and last night not at all-tired all the time anyway. My "housemate" has started to read some of the info out there on Fibro and has started to show some interest but this is sporadic-today he reminded me of our agreement that he would cut the grass this summer if I did the laundry! I just agreed because it seemed so dumb-I did our laundry yesterday and he ended up not cutting the grass anyway. Today I do not have the energy to do either or anything else. My only "R & R" seems to come really from my 4 cats, two boys about age 12 and two girls almost 2 years old. They give so much affection and seem to know when I do not feel well. I went to work a year ago for a dentist friend whom I had a relationship with, but this has been very difficult with so many more pitfalls than I could even imagine. He lives with me now but our relationship is totally platonic on my part as I just can't manage anything more. No comfortable at all! I wish I could have him just leave but then I lose my job, his financial contribution to household expenses, and the small amount of help he gives around the house. His job also gives me medical insurance with prescription coverage which I would hate to lose. I feel caught in a bind. I finally several months ago chose to speak up about my chronic pain and ask for help. I don't know where to take it now and don't know how to ask for help without feeling guilty-I'm the nurse who is supposed to be the helper. Sorry I ran on so long...thank you so much for this chance to talk about it. Dianne in PA 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Hi Penny, And welcome to the group. Hope talk to you again really soon! Kara Conder (Indiana)"Penny R. Duvall" wrote: I am new to this group well I joined couple of weeks ago. I have been busy and hurting. I have six children. 19 year old girl, 13 year old boy, 13 year old step-daughter, 6 year old son, 4 year old son, and a little girl who will be 2 on the 10th of this month. I have hurt ever since I can remember the doctors would only say that it was growing pains when I was 10 until I was 18, then they would say that they did not know what it was I am now 38. Until about 3 years ago I got a new doctor she had me do a questioner and ask where it hurt then she did a lot of blood test, to rule out other things. That is when I was diagnosed with Fibromyalgia. I still hurt ever day some where on my body I would think something was wrong with me. I have a hard time dealing with six children, but I just have to take it one day at a time.Thank you, Penny Duvall1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2005 Report Share Posted May 8, 2005 Trudy, It is nice to have you in the group, but I am so sorry you have to be here. I think you will love this little family. The support and encouragment is wonderful. I am very interested in the group support that your councler is interested in. I was working for Dr. Holbel at the Bellaire Animal hospital and in 99 suffered a neck injury during a vet conference in Florida. I ruptured one disk in neck C5-6 and herniated c 6-7. My life has been forever changed. Besides the severe muscle spasms in shoulders, I ended up having to leave my job due to the inability to do it. I Started singing with darling hubby and for the past few years did great at that. Following the neck injury all the strange stuff kicked in, DXed with IBS with constipation and diverticulitis, ( Yippie) severe muscle pain in every pressure point, severe TMJ and now left side face Trigeminal Neuroalgia, Raynard's syndrome, confusion, memory problems, loss of balance, trouble swallowing, pseudo seizures, trouble sleeping at night and then during day staying awake, thank God kids are grown, changes in hearing, sight and dropping things. I fall down a lot, my family have learned to keep things humorous. Small tasks like taking a shower seem like an insurmountable task, and walking to the mail box is my big adventure of the day. I have to feed and water over 80 birds, 5 dogs, 3 cats 30 pet rats, 15 mice, 15 rather large goldfish and a black widow spider. I have Post Traumatic Stress, OCD, AADHD, PMS, have had 20 surgeries, can't control my body's heat register, I am either cold or hot. Am becoming increasingly afraid to be social. I feel stupid when I don't remember peoples names. There are so many symptoms Dr. Carey said it would not really do anything for me to go to a reumy since the treatment is so difficult. I had to change 3 doctors before I found one that would listen to me. I was going to doctors who sent me to shrinks, who said I was fine so back to doctors,...but Carey told me this is normal with Fibro. Hey has anyone intorduced you to Salonpas???????? I love them and have the GLens pharmacy in Bellaire keep them in stock. Cheap and really help me so much. You should try them.....look forward to talking to you. Debi Trudy wrote: Wow, Diane...your story is so familiar. I recently joined this grouptoo and am hoping to learn more about fibro/treatment/qaulity of lifeissues. I think having someone to listen, understand, and validate isthe key to feeling better mentally. I too am "stuck" in a livingsituation that is quite odd and am trying to find a way to be on myown. I live at my ex-husbands house so I can still care for mychildren. I have six and three are still at home. I lost my job,health insurance, apartment, and car to this past year of being sosick. I finally applied for SSDI per my rheumatologist and am waitingan appeal. I would much rather go back to work, though when eventaking a shower becomes a huge event, I am not sure how to accomplisha job! Here's to finding some solutions and making a good day anyway.Trudy.> Hi. I am new to this group but having been reading the posts latelysince I first found you guys on the Web. 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2005 Report Share Posted May 8, 2005 Trudy, It is nice to have you in the group, but I am so sorry you have to be here. I think you will love this little family. The support and encouragment is wonderful. I am very interested in the group support that your councler is interested in. I was working for Dr. Holbel at the Bellaire Animal hospital and in 99 suffered a neck injury during a vet conference in Florida. I ruptured one disk in neck C5-6 and herniated c 6-7. My life has been forever changed. Besides the severe muscle spasms in shoulders, I ended up having to leave my job due to the inability to do it. I Started singing with darling hubby and for the past few years did great at that. Following the neck injury all the strange stuff kicked in, DXed with IBS with constipation and diverticulitis, ( Yippie) severe muscle pain in every pressure point, severe TMJ and now left side face Trigeminal Neuroalgia, Raynard's syndrome, confusion, memory problems, loss of balance, trouble swallowing, pseudo seizures, trouble sleeping at night and then during day staying awake, thank God kids are grown, changes in hearing, sight and dropping things. I fall down a lot, my family have learned to keep things humorous. Small tasks like taking a shower seem like an insurmountable task, and walking to the mail box is my big adventure of the day. I have to feed and water over 80 birds, 5 dogs, 3 cats 30 pet rats, 15 mice, 15 rather large goldfish and a black widow spider. I have Post Traumatic Stress, OCD, AADHD, PMS, have had 20 surgeries, can't control my body's heat register, I am either cold or hot. Am becoming increasingly afraid to be social. I feel stupid when I don't remember peoples names. There are so many symptoms Dr. Carey said it would not really do anything for me to go to a reumy since the treatment is so difficult. I had to change 3 doctors before I found one that would listen to me. I was going to doctors who sent me to shrinks, who said I was fine so back to doctors,...but Carey told me this is normal with Fibro. Hey has anyone intorduced you to Salonpas???????? I love them and have the GLens pharmacy in Bellaire keep them in stock. Cheap and really help me so much. You should try them.....look forward to talking to you. Debi Trudy wrote: Wow, Diane...your story is so familiar. I recently joined this grouptoo and am hoping to learn more about fibro/treatment/qaulity of lifeissues. I think having someone to listen, understand, and validate isthe key to feeling better mentally. I too am "stuck" in a livingsituation that is quite odd and am trying to find a way to be on myown. I live at my ex-husbands house so I can still care for mychildren. I have six and three are still at home. I lost my job,health insurance, apartment, and car to this past year of being sosick. I finally applied for SSDI per my rheumatologist and am waitingan appeal. I would much rather go back to work, though when eventaking a shower becomes a huge event, I am not sure how to accomplisha job! Here's to finding some solutions and making a good day anyway.Trudy.> Hi. I am new to this group but having been reading the posts latelysince I first found you guys on the Web. 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2005 Report Share Posted May 8, 2005 Trudy, It is nice to have you in the group, but I am so sorry you have to be here. I think you will love this little family. The support and encouragment is wonderful. I am very interested in the group support that your councler is interested in. I was working for Dr. Holbel at the Bellaire Animal hospital and in 99 suffered a neck injury during a vet conference in Florida. I ruptured one disk in neck C5-6 and herniated c 6-7. My life has been forever changed. Besides the severe muscle spasms in shoulders, I ended up having to leave my job due to the inability to do it. I Started singing with darling hubby and for the past few years did great at that. Following the neck injury all the strange stuff kicked in, DXed with IBS with constipation and diverticulitis, ( Yippie) severe muscle pain in every pressure point, severe TMJ and now left side face Trigeminal Neuroalgia, Raynard's syndrome, confusion, memory problems, loss of balance, trouble swallowing, pseudo seizures, trouble sleeping at night and then during day staying awake, thank God kids are grown, changes in hearing, sight and dropping things. I fall down a lot, my family have learned to keep things humorous. Small tasks like taking a shower seem like an insurmountable task, and walking to the mail box is my big adventure of the day. I have to feed and water over 80 birds, 5 dogs, 3 cats 30 pet rats, 15 mice, 15 rather large goldfish and a black widow spider. I have Post Traumatic Stress, OCD, AADHD, PMS, have had 20 surgeries, can't control my body's heat register, I am either cold or hot. Am becoming increasingly afraid to be social. I feel stupid when I don't remember peoples names. There are so many symptoms Dr. Carey said it would not really do anything for me to go to a reumy since the treatment is so difficult. I had to change 3 doctors before I found one that would listen to me. I was going to doctors who sent me to shrinks, who said I was fine so back to doctors,...but Carey told me this is normal with Fibro. Hey has anyone intorduced you to Salonpas???????? I love them and have the GLens pharmacy in Bellaire keep them in stock. Cheap and really help me so much. You should try them.....look forward to talking to you. Debi Trudy wrote: Wow, Diane...your story is so familiar. I recently joined this grouptoo and am hoping to learn more about fibro/treatment/qaulity of lifeissues. I think having someone to listen, understand, and validate isthe key to feeling better mentally. I too am "stuck" in a livingsituation that is quite odd and am trying to find a way to be on myown. I live at my ex-husbands house so I can still care for mychildren. I have six and three are still at home. I lost my job,health insurance, apartment, and car to this past year of being sosick. I finally applied for SSDI per my rheumatologist and am waitingan appeal. I would much rather go back to work, though when eventaking a shower becomes a huge event, I am not sure how to accomplisha job! Here's to finding some solutions and making a good day anyway.Trudy.> Hi. I am new to this group but having been reading the posts latelysince I first found you guys on the Web. 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2005 Report Share Posted May 9, 2005 Hi Penny, Welcome to the group. Six kids are a lot to handle. I hope your husband pitches in. This is a great group to support you in your journey with FMS. We come here to share our lives with each other. The good, the bad and the "this really sucks". You didn't mention if your able to use medication to help with this disease. I've tried so many different types of meds I could start a pharmacy. Right now it seems to be under control for the most part. I look forward to getting to know you here. Kathleen in N.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2005 Report Share Posted May 9, 2005 Hi Penny, Welcome to the group. Six kids are a lot to handle. I hope your husband pitches in. This is a great group to support you in your journey with FMS. We come here to share our lives with each other. The good, the bad and the "this really sucks". You didn't mention if your able to use medication to help with this disease. I've tried so many different types of meds I could start a pharmacy. Right now it seems to be under control for the most part. I look forward to getting to know you here. Kathleen in N.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2005 Report Share Posted May 9, 2005 Hi Penny, Welcome to the group. Six kids are a lot to handle. I hope your husband pitches in. This is a great group to support you in your journey with FMS. We come here to share our lives with each other. The good, the bad and the "this really sucks". You didn't mention if your able to use medication to help with this disease. I've tried so many different types of meds I could start a pharmacy. Right now it seems to be under control for the most part. I look forward to getting to know you here. Kathleen in N.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2005 Report Share Posted May 15, 2005 Hi Diane! Welcome to the group. Nice to see someone new. I hope you find all you need here. Lord knows this is my only real support, and it sure helps. There are some real angels here. Hell, I married my husband JUST to have health insurance. We had been living together for over 5 years, but I never really wanted to be married to him, at least not on a "love" level. I DO love him, but I am not IN LOVE with him. Anyway, I had lost my job that had great health insurance right before I was diagnosed with fibro. I still owe ER bills for over $15,000 for the 8 or so months that I was without coverage. I used to feel really shitty about marrying to get coverage, but I don't care what anyone else thinks anymore. Unless they walk a mile in your shoes, they don't know what you have been through. We just went down to City Hall and got married in 2002. I never had the nice wedding I always dreamed of, and I never got to wear my mom's wedding dress that she had saved for me. I never got a honeymoon. We went out for pizza the day we got married, and we ended up having to leave as soon as the waitress brought it to our table cause I was in so much pain I was about to get sick to my stomach. Then for the real fun, I ended up in a walk-in clinic on my wedding night. I ended up with this Indian doctor who was just cruel. He pushed on my side that hurts so hard, I kicked him. I acted like it was an accident, but the hell it was! He was so mean to me! Sent me home with TEN Ultram! What a joke. When I actually married my husband, I was in love with him. Things were different back then. This was before his big addiction problem. He was a different person back then. I still didn't want to get married, but I didn't have much choice. It was either that or never get any medical treatment because I sure as hell could not afford it paying full price. Who the hell can? Even now, I am stuck living with someone who I don't even LIKE most days. But I have no place to go but the streets. I have my kitties to think of too. They ARE my kids. Thank God we don't have any human children. I keep hoping to get on disability and then try to find a way to make it on my own, but getting $650 a month isn't enough to live on. It's a sad state, but I try to make the most of it. I think I am going to have to go back to work cause I see no other option. I don't know what will happen when I won't be able to get up for work most days. I'll probably get fired a lot. Maybe something will come up in the mean time though. You never know. God works in mysterious ways and all. Good luck. It is a bit comforting knowing that I am not the only one in this situation. Maybe some of us gals should get together and get a place with our combined SSDI, lol. ~*Kerrie*~ New to Group Hi. I am new to this group but having been reading the posts lately since I first found you guys on the Web. I tried a few of the suggestions I read and they have always been helpful. I am hoping to join this group because I honestly don't know how to deal with this disease. I don't often speak up about my problems, especially with my family out of town and friends locally. Not speaking up and making changes in the past has seriously cost me in the past with my jobs and relationships. No one knew my concerns so when I could not keep up, no one understood. My recent experience has been that most people I know, friends and medical professionals, have little understanding of what living with chronic pain is like. I know that I need support in my life for me as well as my trying to help others and I believe this group tries to do that for each other. I really have no one I talk to about this and so I feel like I am in uncharted territory alone. I am 52, I live in Pennsylvania, and I am an RN. I have always worked in the mental health field, first on inpatient units, then 10 years in a psych emergency room, then outpatient research with Alzheimer's Disease and 1st Episode Psychotic Patients. I then switched to working in the healthcare insurance field and worked my way up to management level. While doing all this, I focused on others and pushed my problems away until about 4 years ago when I struggled everyday to just get out of bed. I went on disability and lost my job when the work's short term disability ran out. Pennsylvania employers use the Family Medical Leave Act to their benefit and not for the employee who is ill. I have only been diagnosed with Fibro approx. 3 months ago and this was by a rheumatologist recommended by my PCP. But I have lived with chronic pain since about age 18 when I was hit by a car while crossing a street. Whenever it flared, I would blame the accident and the weather, stress, etc., and try to barrel my way through the day. Since then, though, I developed Crohn's Disease/Ulcerative Colitis and have had surgery twice, in 1977 and again 1986-to the point of receiving last rites in the days before the surgeries. After years of taking Predisone for that, I developed Osteoporosis (especially in the hips and lower back.) Add Menopause now to the picture and mix in a pretty bad depression about 3 years ago which I have not yet pulled out of. Over the years, I have had also the chronic pain and off the wall strange symptoms that now make sense after reading a bit on Fibro. The past 2 years, the pain has been everyday, mostly intense to extreme. I have most of the trigger points but especially in my neck, upper back, and just above the hips. I find it difficult to move about first thing in the morning and usually have to sit down to wait for the pain meds to kick in. I also become very frustrated by how forgetful I have become, when I can't find the car keys I just had, etc. I have been on so many meds over the years but mainly with the Crohn's Disease. I took Darvacet for pain as I could no longer take NSAIDs. For the muscle pain, I take Vicodan ES now but it does not work so great. The rheumatologist has given me Ultram but I don't think it helps at all. He had me double the dose to 300mg daily but now I have a continuous high pitched ringing in my ears and did not take the med today. I don't know why I would take it anyway if it does not help. I use lots of heating pads though and those OTC pain patches when I am very uncomfortable. I still have the Vicodan when I feel really bad but the rheumotologist seems to be against it. Now he wants to add Trazedone to my other antidepressants and I am not comfortable with it. I feel like a walking drugstore! I have run the gamut with the antidepressant meds and am now on Cymbalta in the AM and Zoloft in the PM. I also take Klonopin for anxiety and Restoril for sleep. My sleep is still very poor. Two nights ago, I slept about 2 hours and last night not at all-tired all the time anyway. My "housemate" has started to read some of the info out there on Fibro and has started to show some interest but this is sporadic-today he reminded me of our agreement that he would cut the grass this summer if I did the laundry! I just agreed because it seemed so dumb-I did our laundry yesterday and he ended up not cutting the grass anyway. Today I do not have the energy to do either or anything else. My only "R & R" seems to come really from my 4 cats, two boys about age 12 and two girls almost 2 years old. They give so much affection and seem to know when I do not feel well. I went to work a year ago for a dentist friend whom I had a relationship with, but this has been very difficult with so many more pitfalls than I could even imagine. He lives with me now but our relationship is totally platonic on my part as I just can't manage anything more. No comfortable at all! I wish I could have him just leave but then I lose my job, his financial contribution to household expenses, and the small amount of help he gives around the house. His job also gives me medical insurance with prescription coverage which I would hate to lose. I feel caught in a bind. I finally several months ago chose to speak up about my chronic pain and ask for help. I don't know where to take it now and don't know how to ask for help without feeling guilty-I'm the nurse who is supposed to be the helper. Sorry I ran on so long...thank you so much for this chance to talk about it. Dianne in PA No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.11.10 - Release Date: 5-13-2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2005 Report Share Posted May 15, 2005 wow Kerrie... I am so sorry. Although I tried the real wedding stuff, and it didn't work out much better, unfortunately... I learned a wedding does not a marriage make! Hell, I married my husband JUST to have health > insurance. We had been living together for over 5 > years, but I never really wanted to be married to > him, at least not on a " love " level. I DO love him, > but I am not IN LOVE with him. We just went down to City Hall and got > married in 2002. I never had the nice wedding I > always dreamed of, and I never got to wear my mom's > wedding dress that she had saved for me. I never got > a honeymoon. We went out for pizza the day we got > married, and we ended up having to leave as soon as > the waitress brought it to our table cause I was in > so much pain I was about to get sick to my stomach. > Then for the real fun, I ended up in a walk-in > clinic on my wedding night. I ended up with this > Indian doctor who was just cruel. He pushed on my > side that hurts so hard, I kicked him. I acted like > it was an accident, but the hell it was! He was so > mean to me! Sent me home with TEN Ultram! What a > joke. Amy Swinderman Live aloha! Yahoo! Mail Stay connected, organized, and protected. Take the tour: http://tour.mail.yahoo.com/mailtour.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2005 Report Share Posted May 15, 2005 wow Kerrie... I am so sorry. Although I tried the real wedding stuff, and it didn't work out much better, unfortunately... I learned a wedding does not a marriage make! Hell, I married my husband JUST to have health > insurance. We had been living together for over 5 > years, but I never really wanted to be married to > him, at least not on a " love " level. I DO love him, > but I am not IN LOVE with him. We just went down to City Hall and got > married in 2002. I never had the nice wedding I > always dreamed of, and I never got to wear my mom's > wedding dress that she had saved for me. I never got > a honeymoon. We went out for pizza the day we got > married, and we ended up having to leave as soon as > the waitress brought it to our table cause I was in > so much pain I was about to get sick to my stomach. > Then for the real fun, I ended up in a walk-in > clinic on my wedding night. I ended up with this > Indian doctor who was just cruel. He pushed on my > side that hurts so hard, I kicked him. I acted like > it was an accident, but the hell it was! He was so > mean to me! Sent me home with TEN Ultram! What a > joke. Amy Swinderman Live aloha! Yahoo! Mail Stay connected, organized, and protected. Take the tour: http://tour.mail.yahoo.com/mailtour.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2005 Report Share Posted May 15, 2005 wow Kerrie... I am so sorry. Although I tried the real wedding stuff, and it didn't work out much better, unfortunately... I learned a wedding does not a marriage make! Hell, I married my husband JUST to have health > insurance. We had been living together for over 5 > years, but I never really wanted to be married to > him, at least not on a " love " level. I DO love him, > but I am not IN LOVE with him. We just went down to City Hall and got > married in 2002. I never had the nice wedding I > always dreamed of, and I never got to wear my mom's > wedding dress that she had saved for me. I never got > a honeymoon. We went out for pizza the day we got > married, and we ended up having to leave as soon as > the waitress brought it to our table cause I was in > so much pain I was about to get sick to my stomach. > Then for the real fun, I ended up in a walk-in > clinic on my wedding night. I ended up with this > Indian doctor who was just cruel. He pushed on my > side that hurts so hard, I kicked him. I acted like > it was an accident, but the hell it was! He was so > mean to me! Sent me home with TEN Ultram! What a > joke. Amy Swinderman Live aloha! Yahoo! Mail Stay connected, organized, and protected. Take the tour: http://tour.mail.yahoo.com/mailtour.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Hi all, I have had ms for 26 yrs. I was a hemodialysis tech for 22 yrs. About 8 years ago,I had to go on disability due to cognitive issues and fatigue. I originally started on Avonex,which I did not tolerate well. I then was on Copaxone for 10 years. Then I was tired of being tired and decided to try LDN , which seems to be working well for me so far. Next week I am going to start replacing my amalgams and then 8 weeks later start Chelation. Bruce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Hi Bruce, Have you ever tried HBOT? Quote Link to comment Share on other sites More sharing options...
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