Comments for Women and Fibromyalgia http://womenandfibromyalgia.com Living with an Invisible Dis-ease Thu, 20 Nov 2008 08:43:15 +0000 http://wordpress.org/?v=2.5.1 Comment on Fibromyalgia and ‘flare-ups’ by Barbara Keddy http://womenandfibromyalgia.com/2008/08/15/fibromyalgia-and-flare-ups/#comment-318 Barbara Keddy Thu, 13 Nov 2008 12:30:20 +0000 http://womenandfibromyalgia.com/?p=34#comment-318 Dear Victoria: Your comments are so very heartbreaking as I don't often receive many from teenagers. This is an area that has been badly neglected and many health care professionals don't believe there is anything wrong with people your age who have fibro symptoms. If you are young you are expected to be healthy. Looking back over my life I believe I had fibro as a child but then the word did not even exist! How to take care of yourself is not easy, I understand that completely. Yesterday I felt rather good and overdid it and by night time I was flaring. To-day I must be very restful and kind to myself. It's a vicious cycle. If I haven't learned at my age I expect it is much more difficult at your age. Pacing is the most frustrating process. Living with fibro requires patience, knowing it is a slower life style than those of your own age, but most of all learning not to be angry with yourself on bad days. An understanding counsellor would be helpful or someone you could talk to who could help you with stress management. Have you tried a meditation class? Light exercise? All of those suggestions have helped me in the past, both to understand what brings on a flare up and to find ways to reduce the amount of stress of living with pain and fatigue (and ultimately find some degree of peace). Learning more about the nervous system and how pain is triggered in the brain is very helpful too. Pain management is key for fibromyalgia people. I do wish you weren't taking so many pills as most do not help. My thoughts are with you during these challenging times. Also do not despair! As more information becomes available there is hope! You have to become expert of your own body. Barbara Dear Victoria:
Your comments are so very heartbreaking as I don’t often receive many from teenagers. This is an area that has been badly neglected and many health care professionals don’t believe there is anything wrong with people your age who have fibro symptoms. If you are young you are expected to be healthy. Looking back over my life I believe I had fibro as a child but then the word did not even exist!
How to take care of yourself is not easy, I understand that completely. Yesterday I felt rather good and overdid it and by night time I was flaring. To-day I must be very restful and kind to myself. It’s a vicious cycle. If I haven’t learned at my age I expect it is much more difficult at your age. Pacing is the most frustrating process. Living with fibro requires patience, knowing it is a slower life style than those of your own age, but most of all learning not to be angry with yourself on bad days. An understanding counsellor would be helpful or someone you could talk to who could help you with stress management. Have you tried a meditation class? Light exercise? All of those suggestions have helped me in the past, both to understand what brings on a flare up and to find ways to reduce the amount of stress of living with pain and fatigue (and ultimately find some degree of peace). Learning more about the nervous system and how pain is triggered in the brain is very helpful too. Pain management is key for fibromyalgia people.
I do wish you weren’t taking so many pills as most do not help. My thoughts are with you during these challenging times. Also do not despair! As more information becomes available there is hope! You have to become expert of your own body.
Barbara

]]> Comment on Fibromyalgia and ‘flare-ups’ by Victoria http://womenandfibromyalgia.com/2008/08/15/fibromyalgia-and-flare-ups/#comment-317 Victoria Thu, 13 Nov 2008 06:04:11 +0000 http://womenandfibromyalgia.com/?p=34#comment-317 Hi, Dr. Keddy. I've just found your blog and it's certainly going to be an interesting read for me. Last year, in December, I started suffering unexplained pain and fatigue. Over the course of 10 long months I was pushed from specialist to specialist, had what felt like gallons of blood taken for tests, and was told that I was just tired because I was depressed. Finally I ended up yelling at my GP that the only reason I was depressed was because I was in so much pain and constantly exhausted. It's hard to stay upbeat when you can't do anything you used to do. I'm 18, and I've yet to meet anyone else my age with Fibro. I know many women who are middle aged or older who have it, but I feel completely alone in my age group. Unfortunately the friends I do have don't quite understand that I CAN'T do the things I used to do, and if they want to see me they have to come to me, because I simply cannot get to them. I have no idea how to best go about taking care of myself, I've taken enough pills in the last year that I'm going to start rattling when I walk! My doctor is no help, I just can't seem to get any information for how to go about my life now. People tell me to pace myself, but that's easier said than done. Some days I can go out for 3 hours and come home fine, other days within 10 minutes I'm in agony or exhausted. As it is I only leave the house if my mother is with me, and even then I only go out one day a week, if that. Thank you for this blog. I intend to order a copy of your book ASAP and hopefully it will help me better understand this invisible disease. Victoria. Hi, Dr. Keddy.

I’ve just found your blog and it’s certainly going to be an interesting read for me. Last year, in December, I started suffering unexplained pain and fatigue. Over the course of 10 long months I was pushed from specialist to specialist, had what felt like gallons of blood taken for tests, and was told that I was just tired because I was depressed. Finally I ended up yelling at my GP that the only reason I was depressed was because I was in so much pain and constantly exhausted. It’s hard to stay upbeat when you can’t do anything you used to do.

I’m 18, and I’ve yet to meet anyone else my age with Fibro. I know many women who are middle aged or older who have it, but I feel completely alone in my age group. Unfortunately the friends I do have don’t quite understand that I CAN’T do the things I used to do, and if they want to see me they have to come to me, because I simply cannot get to them.

I have no idea how to best go about taking care of myself, I’ve taken enough pills in the last year that I’m going to start rattling when I walk! My doctor is no help, I just can’t seem to get any information for how to go about my life now. People tell me to pace myself, but that’s easier said than done. Some days I can go out for 3 hours and come home fine, other days within 10 minutes I’m in agony or exhausted. As it is I only leave the house if my mother is with me, and even then I only go out one day a week, if that.

Thank you for this blog. I intend to order a copy of your book ASAP and hopefully it will help me better understand this invisible disease.

Victoria.

]]> Comment on Fibromyalgia and Other Pains: Living with Anxiety and Apprehension by Barbara Keddy http://womenandfibromyalgia.com/2008/10/10/fibromyalgia-and-sore-hips/#comment-305 Barbara Keddy Fri, 07 Nov 2008 11:53:46 +0000 http://womenandfibromyalgia.com/?p=36#comment-305 Dear Ms.Unknown: There are millions of others who also can relate to your daily challenges. It is better when we have the diagnosis while at the same time it doesn't help much to know that it is a chronic condition. Hopefully I have elsewhere provided some helpful hints about trying to soothe an already over stimulated nervous system, like quiet meditation, avoiding overdoing for others as much as possible, gentle massages if they aren't too expensive for you, mild exercise and trying to unravel whatever in your past history started your nervous system on this path to continuous excitement. It isn't easy and often is one step forward and two backward. But, we have to go on living as full a life as possible in spite of our struggles. If you are able to buy my book you will read what others have experienced and hopefully their voices will give you some degree of comfort You have my very best wishes, Barbara Dear Ms.Unknown:
There are millions of others who also can relate to your daily challenges. It is better when we have the diagnosis while at the same time it doesn’t help much to know that it is a chronic condition. Hopefully I have elsewhere provided some helpful hints about trying to soothe an already over stimulated nervous system, like quiet meditation, avoiding overdoing for others as much as possible, gentle massages if they aren’t too expensive for you, mild exercise and trying to unravel whatever in your past history started your nervous system on this path to continuous excitement. It isn’t easy and often is one step forward and two backward. But, we have to go on living as full a life as possible in spite of our struggles. If you are able to buy my book you will read what others have experienced and hopefully their voices will give you some degree of comfort
You have my very best wishes,
Barbara

]]> Comment on Fibromyalgia and Other Pains: Living with Anxiety and Apprehension by Ms. Unknown http://womenandfibromyalgia.com/2008/10/10/fibromyalgia-and-sore-hips/#comment-304 Ms. Unknown Fri, 07 Nov 2008 10:32:05 +0000 http://womenandfibromyalgia.com/?p=36#comment-304 I'm glad there are people like me who can understand the constant pain, the foggy states, the heart aches, the aching, burning, throbbing of the muscles the unending battle to make it through today. Thanks for sharing with me, I needed to know I'm not alone,. now I'll share my own story. I kept thinking I was just getting more and more fatigued. I found I was waking up going to work, coming home soar and sleeping untill dinner and "then fall asleep on the couch just to be woken up and sent to bed, then start the next day repeating this pattern. I recall telling my doctor that "I was sick and tired of being sick and tired!" I knew I was in serious trouble when one morning I found the pancake batter was too heavy to stir! I finally had to give up the job I loved, after the doctor and I realizing that it was not going to get better. I done some of my own research on the internet and reading books trying to find something to help me deal with constant pain, sudden cramping, trembling/shakinesss, the feeling of electric jolts run throughout my body and the difficulty I have getting to sleep or just staying focused. I know how very upsetting it is when you hear some one (especially a doctor) say " it's all in your head" or "she always complains about being in pain, she just wants attention". I know now that it is somthing real , something called Fibromyalgia, and is not just a figment of my imagination! I was diagnosed with Fibromyalgia (18 out of 18 tender points) over three years ago. What makes it especially hard for me to cope is that I have mutipal chronic conditions and other alighments including: Diabeties, Asthma, High Blood Pressure, Periferal Neuropathy, Carpal Tunnal, Temporomandibular Joint Dysfunction Syndrome, Deperession and more. I find it hard to believe that I am still fighting with my insurance company over the disability claim. I only have a problem with my Muscles, my Nerves, my Blood and The Air I Breath, why should I feel sick? I appolagize for my rambling on, I just wanted to share my story and to thank you again for your story, and to let others know they are not alone! :-) I’m glad there are people like me who can understand the constant pain, the foggy states, the heart aches, the aching, burning, throbbing of the muscles the unending battle to make it through today.

Thanks for sharing with me, I needed to know I’m not alone,. now I’ll share my own story.

I kept thinking I was just getting more and more fatigued. I found I was waking up going to work, coming home soar and sleeping untill dinner and “then fall asleep on the couch just to be woken up and sent to bed, then start the next day repeating this pattern. I recall telling my doctor that “I was sick and tired of being sick and tired!”
I knew I was in serious trouble when one morning I found the pancake batter was too heavy to stir! I finally had to give up the job I loved, after the doctor and I realizing that it was not going to get better.

I done some of my own research on the internet and reading books trying to find something to help me deal with constant pain, sudden cramping, trembling/shakinesss, the feeling of electric jolts run throughout my body and the difficulty I have getting to sleep or just staying focused.

I know how very upsetting it is when you hear some one (especially a doctor) say ” it’s all in your head” or “she always complains about being in pain, she just wants attention”. I know now that it is somthing real , something called Fibromyalgia, and is not just a figment of my imagination!

I was diagnosed with Fibromyalgia (18 out of 18 tender points) over three years ago. What makes it especially hard for me to cope is that I have mutipal chronic conditions and other alighments including:
Diabeties, Asthma,
High Blood Pressure,
Periferal Neuropathy,
Carpal Tunnal,
Temporomandibular Joint Dysfunction Syndrome,
Deperession and more.

I find it hard to believe that I am still fighting with my insurance company over the disability claim. I only have a problem with my Muscles, my Nerves, my Blood and The Air I Breath, why should I feel sick?

I appolagize for my rambling on, I just wanted to share my story and to thank you again for your story, and to let others know they are not alone! :-)

]]> Comment on The Stigma of Fibromyalgia, a Women’s ‘Condition’ by Barbara Keddy http://womenandfibromyalgia.com/2008/01/20/the-stigma-of-fibromyalgia-a-womens-condition/#comment-302 Barbara Keddy Thu, 06 Nov 2008 12:27:49 +0000 http://womenandfibromyalgia.com/2008/01/20/the-stigma-of-fibromyalgia-a-womens-condition/#comment-302 Dear Marco: I am honored that you have chosen to write about your guilt with this condition. I suspect there are many very sensitive, thoughtful and empathetic men out there who are ashamed to admit that they live with this invisible condition. The way in which our society is set up is that men are supposed to be always in control, yet all of us with fibromyalgia experience the same thing: how do we continue day-to-day when we don't have the strengh to do it without help from others? Then the guilt sets in. After all, we look perfectly healthy! 'Controlling' an easily aroused nervous system, our hyper vigilance and intense feelings of family responsibility is not easy. Only by speaking about it openly do we find some degree of relief. You are very brave as few men will do so, as noted from this web site of mine. A few have sent me e mails but chosen not to leave a comment. The fact that you even remember when you were 13 and had the first experiences is intriguing. Men and children with fibromyalgia present us with many questions to explore which have been badly neglected. Hopefully more men will begin to speak out. Like everyone I want more answers to this great puzzle and you are one of thousands who can help fill in some of the pieces. Thank you. Best wishes, Barbara Dear Marco:
I am honored that you have chosen to write about your guilt with this condition. I suspect there are many very sensitive, thoughtful and empathetic men out there who are ashamed to admit that they live with this invisible condition. The way in which our society is set up is that men are supposed to be always in control, yet all of us with fibromyalgia experience the same thing: how do we continue day-to-day when we don’t have the strengh to do it without help from others? Then the guilt sets in. After all, we look perfectly healthy!
‘Controlling’ an easily aroused nervous system, our hyper vigilance and intense feelings of family responsibility is not easy. Only by speaking about it openly do we find some degree of relief. You are very brave as few men will do so, as noted from this web site of mine. A few have sent me e mails but chosen not to leave a comment.
The fact that you even remember when you were 13 and had the first experiences is intriguing. Men and children with fibromyalgia present us with many questions to explore which have been badly neglected. Hopefully more men will begin to speak out.
Like everyone I want more answers to this great puzzle and you are one of thousands who can help fill in some of the pieces. Thank you.
Best wishes,
Barbara

]]> Comment on The Stigma of Fibromyalgia, a Women’s ‘Condition’ by Marco http://womenandfibromyalgia.com/2008/01/20/the-stigma-of-fibromyalgia-a-womens-condition/#comment-301 Marco Thu, 06 Nov 2008 03:25:01 +0000 http://womenandfibromyalgia.com/2008/01/20/the-stigma-of-fibromyalgia-a-womens-condition/#comment-301 I am a male and the bread winner for my family suffering with this condition. I am 30yrs old and I can trace my symptoms as far back since I was 13 years old. I also often times feel ashamed to share the fact that I suffer from this condition with others. I feel somewhat guilty when I have to tell my wife that I just cannot handle some chores around the house. I do feel 'weak' and incompetent at times which leads to depression. I do feel emasculated at times. Thank you for your thoughts on the subject. I am a male and the bread winner for my family suffering with this condition. I am 30yrs old and I can trace my symptoms as far back since I was 13 years old. I also often times feel ashamed to share the fact that I suffer from this condition with others. I feel somewhat guilty when I have to tell my wife that I just cannot handle some chores around the house. I do feel ‘weak’ and incompetent at times which leads to depression. I do feel emasculated at times. Thank you for your thoughts on the subject.

]]> Comment on Fibromyalgia and Other Pains: Living with Anxiety and Apprehension by Barbara Keddy http://womenandfibromyalgia.com/2008/10/10/fibromyalgia-and-sore-hips/#comment-300 Barbara Keddy Fri, 31 Oct 2008 17:44:48 +0000 http://womenandfibromyalgia.com/?p=36#comment-300 Thanks to you, Eugene! Thanks to you, Eugene!

]]> Comment on Fibromyalgia and food: “thy food shall be thy remedy”(Hippocrates) by Barbara Keddy http://womenandfibromyalgia.com/2007/10/18/fibromyalgia-and-foodthy-food-shall-be-thy-remedyhippocrates/#comment-299 Barbara Keddy Thu, 30 Oct 2008 19:19:03 +0000 http://womenandfibromyalgia.com/2007/10/18/fibromyalgia-and-foodthy-food-shall-be-thy-remedyhippocrates/#comment-299 I wonder if there are others out there who have had continued success with eliminating certain foods? My view still remains that fibro is the result of an overstimulated nervous system and possibly specific foods could be triggers. There is so much we don't know. I am happy Annette that you have had good results. Best wishes, Barbara I wonder if there are others out there who have had continued success with eliminating certain foods?
My view still remains that fibro is the result of an overstimulated nervous system and possibly specific foods could be triggers. There is so much we don’t know. I am happy Annette that you have had good results. Best wishes, Barbara

]]> Comment on Fibromyalgia and food: “thy food shall be thy remedy”(Hippocrates) by Annette http://womenandfibromyalgia.com/2007/10/18/fibromyalgia-and-foodthy-food-shall-be-thy-remedyhippocrates/#comment-298 Annette Thu, 30 Oct 2008 18:32:48 +0000 http://womenandfibromyalgia.com/2007/10/18/fibromyalgia-and-foodthy-food-shall-be-thy-remedyhippocrates/#comment-298 Fibromyalgia seems to run in my family. I've had it for years as well. Recently, my son was diagnosed with migraine headaches. The pediatrician suggested an elimination diet. To show my support, I also elminated with him. His migraines decreased when he eliminated dairy products. My fibromyalgia has disappeared as a result. I'm in the process of trying to educate those in my family to eliminate dairy as well (not easy when you come from a long line of dairy farmers). I still slip up on my dairy every now and then. I pay dearly for it afterwards and it always brings me back to my confirmation of a dairy allergy. Fibromyalgia seems to run in my family. I’ve had it for years as well. Recently, my son was diagnosed with migraine headaches. The pediatrician suggested an elimination diet. To show my support, I also elminated with him. His migraines decreased when he eliminated dairy products. My fibromyalgia has disappeared as a result. I’m in the process of trying to educate those in my family to eliminate dairy as well (not easy when you come from a long line of dairy farmers). I still slip up on my dairy every now and then. I pay dearly for it afterwards and it always brings me back to my confirmation of a dairy allergy.

]]> Comment on Fibromyalgia and Other Pains: Living with Anxiety and Apprehension by Eugene http://womenandfibromyalgia.com/2008/10/10/fibromyalgia-and-sore-hips/#comment-297 Eugene Thu, 30 Oct 2008 03:01:05 +0000 http://womenandfibromyalgia.com/?p=36#comment-297 Nice article. Thanks. :) Eugene Nice article. Thanks. :) Eugene

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