Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Hi everyone, My name is Sue, I'm 54 and just finally got a diagnosis, along with my partner who is 57, of fibro. We have both been sick for years, suspected fibro but only recently her HMO switched doctors and we found someone who could dx it. I have trouble doing the cut and paste thing with webtv, so will have to skip the question and answer intro and just give a little history of our medical problems. I've had lifelong IBS to the point of really interfering with daily living (drive a pickup with a camper shell so I can have my porta potty with me). I also have severe lifelong migraines (thank goodness for Imitrex), mitral valve prolapse, TMJ. My other fibro symptoms are: can't sleep due to pain, so I stay up until 1 or 2 am when exhaustion overtakes me and I can sleep a couple hours, pain everywhere in my body that changes location from day to day, shoulders, butt, feet are currently my worst. Others are extreme fatigue, muscle weakness and clumsiness (the neighbors probably think I drink when they see me out working in the yard), just a general exhausted and sick feeling. I was working part time doing woodworking until recently when we have had to cut down as no energy to travel to craft shows anymore and set up etc. and be out in the weather (we live in the desert). My partner works in aerospace but she is getting so crippled up as her job involves lifting and exertion. She has fibro fog worse than me and problems concentrating and blurry vision. She does not have IBS, or MVP but has recently started getting frequent migraine-type headaches too. Reading this all put together astonishes me that we have managed to get along as well as we have! We are not sure where or how we got fibro? Back in the early 80's, we lived on a ranch that was contaminated by agriculture waste, was built on an old military base,and had chromium water contamination. That was when we started getting sick (mostly extreme fatigue at first and CFS symptoms) and a number of our animals died from cancer. It is a big question mark.... Neither of us have ever had mono. Let's see, both of us are overweight, not on disability, foods don't seem to be a trigger, cold and dampness is a trigger, STRESS is a huge trigger! It has been a relief to finally get diagnosed. Both of us had felt that we might actually be dying since we felt so bad and are getting steadily worse. The hardest part, since diagnosis, has been to acknowledge that we have a serious chronic illness and to give ourselves permission to let others know that we have limitations now and to allow ourselves to do things that make life easier for us. Learning to say no is going to be a hard thing! It is really hard for me to gradually give up the things I cherish most, riding horses, gardening, nature hikes but I am trying to find other ways to still do what I love (drive my pony instead of ride, container garden, sit outdoors and read by my little fish pond etc.). Looking forward to being a part of this group, from what I have read so far it seems like a great bunch of supportive people. Sue (and ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Welcome Sue and . I'm , 19, dx with CFS and Fibro for 4 years now. I'm sorry that both of you are sick. It can make life harder, but at least someone will always understand you. I'm lucky that my girlfriend understands. She didn't know me when I was healthy, but she'll do what she can to get me as healthy as I can be. I never really thought about environmental factors contributing to Fibro before. I always thought it was just luck of the draw. Just out of curiosity, what is TMJ? If you're looking to continue selling crafts, you could sell online. You won't have to deal with the heat and you could still get the satisfaction of knowing that people are enjoying what you do. I'm only now realizing that I can't do what I want to. I'm working on dealing with this illness better. I understood the chronic part, but the serious part is only now setting in. I'm glad that you're able to find ways to keep doing what you like. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Welcome Sue and . I'm , 19, dx with CFS and Fibro for 4 years now. I'm sorry that both of you are sick. It can make life harder, but at least someone will always understand you. I'm lucky that my girlfriend understands. She didn't know me when I was healthy, but she'll do what she can to get me as healthy as I can be. I never really thought about environmental factors contributing to Fibro before. I always thought it was just luck of the draw. Just out of curiosity, what is TMJ? If you're looking to continue selling crafts, you could sell online. You won't have to deal with the heat and you could still get the satisfaction of knowing that people are enjoying what you do. I'm only now realizing that I can't do what I want to. I'm working on dealing with this illness better. I understood the chronic part, but the serious part is only now setting in. I'm glad that you're able to find ways to keep doing what you like. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 In a message dated 4/24/2002 3:33:29 PM Pacific Daylight Time, sleepyme50@... writes: > . I am literally starving for friends in my > age range (I am 51) and very lonely. I have been sick > off and on with CFS/Fibro resulting from a severe case > of Mono at the age of 17 and in the last 15 years, I > have been sick every day..no more remissions!!! > I'm 24 but I feel the same way. My husband is more than great about FM and I have one person from high school that I'm still friends. But other than that everyone dumped me off when I couldn't do the same activities anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 In a message dated 4/24/2002 3:33:29 PM Pacific Daylight Time, sleepyme50@... writes: > . I am literally starving for friends in my > age range (I am 51) and very lonely. I have been sick > off and on with CFS/Fibro resulting from a severe case > of Mono at the age of 17 and in the last 15 years, I > have been sick every day..no more remissions!!! > I'm 24 but I feel the same way. My husband is more than great about FM and I have one person from high school that I'm still friends. But other than that everyone dumped me off when I couldn't do the same activities anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Sue & : Just a friendly, back-channel note to say hello..I think we have a lot in common. I also live in the desert and I am almost praying that we live near eachother. I am literally starving for friends in my age range (I am 51) and very lonely. I have been sick off and on with CFS/Fibro resulting from a severe case of Mono at the age of 17 and in the last 15 years, I have been sick every day..no more remissions!!! You two sound like courageous womyn...I would like to get to know you! I live in the high desert of Palmdale which is about 70 miles from Los Angeles. If we don't live near to eachother, I would love to be your e-pal:) Take care and be well, Lynne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Sue & : Just a friendly, back-channel note to say hello..I think we have a lot in common. I also live in the desert and I am almost praying that we live near eachother. I am literally starving for friends in my age range (I am 51) and very lonely. I have been sick off and on with CFS/Fibro resulting from a severe case of Mono at the age of 17 and in the last 15 years, I have been sick every day..no more remissions!!! You two sound like courageous womyn...I would like to get to know you! I live in the high desert of Palmdale which is about 70 miles from Los Angeles. If we don't live near to eachother, I would love to be your e-pal:) Take care and be well, Lynne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Welcome Sue and ! Pull up a comfy chair, sip on some green tea w/ honey, and get comfortable: this group stays busy chatting! LOVE & LIGHT, > Hi Sue & : > Just a friendly, back-channel note to say hello..I > think we have a lot in common. I also live in the > desert and I am almost praying that we live near > eachother. I am literally starving for friends in my > age range (I am 51) and very lonely. I have been sick > off and on with CFS/Fibro resulting from a severe case > of Mono at the age of 17 and in the last 15 years, I > have been sick every day..no more remissions!!! > You two sound like courageous womyn...I would like to > get to know you! I live in the high desert of > Palmdale which is about 70 miles from Los Angeles. If > we don't live near to eachother, I would love to be > your e-pal:) > Take care and be well, > Lynne > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Welcome Sue and ! Pull up a comfy chair, sip on some green tea w/ honey, and get comfortable: this group stays busy chatting! LOVE & LIGHT, > Hi Sue & : > Just a friendly, back-channel note to say hello..I > think we have a lot in common. I also live in the > desert and I am almost praying that we live near > eachother. I am literally starving for friends in my > age range (I am 51) and very lonely. I have been sick > off and on with CFS/Fibro resulting from a severe case > of Mono at the age of 17 and in the last 15 years, I > have been sick every day..no more remissions!!! > You two sound like courageous womyn...I would like to > get to know you! I live in the high desert of > Palmdale which is about 70 miles from Los Angeles. If > we don't live near to eachother, I would love to be > your e-pal:) > Take care and be well, > Lynne > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Welcome Sue and ! Pull up a comfy chair, sip on some green tea w/ honey, and get comfortable: this group stays busy chatting! LOVE & LIGHT, > Hi Sue & : > Just a friendly, back-channel note to say hello..I > think we have a lot in common. I also live in the > desert and I am almost praying that we live near > eachother. I am literally starving for friends in my > age range (I am 51) and very lonely. I have been sick > off and on with CFS/Fibro resulting from a severe case > of Mono at the age of 17 and in the last 15 years, I > have been sick every day..no more remissions!!! > You two sound like courageous womyn...I would like to > get to know you! I live in the high desert of > Palmdale which is about 70 miles from Los Angeles. If > we don't live near to eachother, I would love to be > your e-pal:) > Take care and be well, > Lynne > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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