Fibromyalgia & Chronic Myofascial Pain - A survival Manual -

Discussion in 'Fibromyalgia Main Forum' started by Rozmund, Nov 11, 2002.

  1. Rozmund

    Rozmund New Member

    I am new to this forum - but am not new to FM - I believe in the old adage that knowledge is power and this disorder does tend to remove the power out of our lives and our relationships as although we look like the gal next door - we feel like we have one foot in the grave. People do not understand us - I am so tired of folks asking what is FMS - that I typed up a one page expose on it for my relatives and friends....as just describing it makes you sound like a whiner...but then being in constant pain, we deserve to whine a bit now and then. Now I just say it is like having the flu 24/7 - you can't be firmly touched because once contact is made the tissues are so sensitive they hurt - you can't sleep at night, but you are exhausted all day. A bummer. This led me to go after Social Services at our neighbourhood hospital for information and I do believe I have found it.

    The book is written by 2 E.R. nurses, Devin Starlanyl and Mary Ellen Copeland - both senior nurses.Life in a stressful arena for these 2 women was the norm. The book is not an easy read - but an essential one in understanding what is happening to our soft tissue sensory mechanisms....what these women tried out and they being nurses could correctly analyze, and report on all facets of this disorder. Now I have used the word disorder twice as this is not a disease in the normal sense...our bodies are just messed up - and the messages from the brain to the rest of the body are not always on the right track. Some people are incorrectly diagnosed with FMS -
    so I am assuming that all of on this board have suffered the trigger points..but it is so much more than that.
    It is a disturbance in the life force...the Lymph System and the Immune System. It is different for men, who do not have the hormonal ups and downs factored in - as is for senior women compared to those that are in their child bearing rearing years fraught with physical and emotional responsibilities that have to be done no matter what.

    I have not had a pain free day in 8 years...I do not know what it means anymore to be free of discomfort even my bra gave me great discomfort so I tossed it ..if I cough my entire rib cage screams ...but we must go on...when I am in brain fog - I vegitate....I have removed all items and people from my life that cry for attention that is one sided....me to them..I try to make as few commitments as possible as I do not know on Monday how I will feel on Wednesday.....I have researched nutrition - everyonce in awhile I will resort to a month of amytripilene 5mg to give me a break from the pain - it is a very old fashioned drug and very safe compared to many being offered these days. Primrose oil seems to be favoured by quite a few people in our support group. Oh yes, by all means join a support group... in the early years I kept a journal to whine into to spare my friends and family. I also kept a TO DO list - and a DONE list - now I do not keep lists I just do what I want when I want and suffer the consequences...life is too short to wait for a good day to happen.

    This 300+ book is a must read in taking back the power of your life - it doesn't minimize the effects of the disorder in any way - but does provide understanding of the malady and tools to live by. I am sure any hospital that has a lending library would have it. If any of you are interested in specifics please let me know what they are and I will look them up in my book and report back here to tell you what these experts say if possible. Don't give up ...don't give in..like Red Green says everynight on TV...we are all in this together. Cheers
  2. Rozmund

    Rozmund New Member

    I am new to this forum - but am not new to FM - I believe in the old adage that knowledge is power and this disorder does tend to remove the power out of our lives and our relationships as although we look like the gal next door - we feel like we have one foot in the grave. People do not understand us - I am so tired of folks asking what is FMS - that I typed up a one page expose on it for my relatives and friends....as just describing it makes you sound like a whiner...but then being in constant pain, we deserve to whine a bit now and then. Now I just say it is like having the flu 24/7 - you can't be firmly touched because once contact is made the tissues are so sensitive they hurt - you can't sleep at night, but you are exhausted all day. A bummer. This led me to go after Social Services at our neighbourhood hospital for information and I do believe I have found it.

    The book is written by 2 E.R. nurses, Devin Starlanyl and Mary Ellen Copeland - both senior nurses.Life in a stressful arena for these 2 women was the norm. The book is not an easy read - but an essential one in understanding what is happening to our soft tissue sensory mechanisms....what these women tried out and they being nurses could correctly analyze, and report on all facets of this disorder. Now I have used the word disorder twice as this is not a disease in the normal sense...our bodies are just messed up - and the messages from the brain to the rest of the body are not always on the right track. Some people are incorrectly diagnosed with FMS -
    so I am assuming that all of on this board have suffered the trigger points..but it is so much more than that.
    It is a disturbance in the life force...the Lymph System and the Immune System. It is different for men, who do not have the hormonal ups and downs factored in - as is for senior women compared to those that are in their child bearing rearing years fraught with physical and emotional responsibilities that have to be done no matter what.

    I have not had a pain free day in 8 years...I do not know what it means anymore to be free of discomfort even my bra gave me great discomfort so I tossed it ..if I cough my entire rib cage screams ...but we must go on...when I am in brain fog - I vegitate....I have removed all items and people from my life that cry for attention that is one sided....me to them..I try to make as few commitments as possible as I do not know on Monday how I will feel on Wednesday.....I have researched nutrition - everyonce in awhile I will resort to a month of amytripilene 5mg to give me a break from the pain - it is a very old fashioned drug and very safe compared to many being offered these days. Primrose oil seems to be favoured by quite a few people in our support group. Oh yes, by all means join a support group... in the early years I kept a journal to whine into to spare my friends and family. I also kept a TO DO list - and a DONE list - now I do not keep lists I just do what I want when I want and suffer the consequences...life is too short to wait for a good day to happen.

    This 300+ book is a must read in taking back the power of your life - it doesn't minimize the effects of the disorder in any way - but does provide understanding of the malady and tools to live by. I am sure any hospital that has a lending library would have it. If any of you are interested in specifics please let me know what they are and I will look them up in my book and report back here to tell you what these experts say if possible. Don't give up ...don't give in..like Red Green says everynight on TV...we are all in this together. Cheers
  3. Kathryn

    Kathryn New Member

    Hi,
    Welcome to the board. I have not yet read this book, but I managed to buy both it and The Fibromyalgia Advocate on Ebay yesterday. I also have Understanding Post-traumatic Fibromyalgia, which is what I have. I have lent it to my doctor, as I think it will benefit both of us for him to learn more about this condition. I am on the minimum amount of medications that I can take and still be somewhat functional. Since I retired in August, I have been able to cut back a little. This board has, I'm certain, saved a lot of marriages, as we can whine to each other and spare our families. I try to keep a cheerful attitude, but at times it is really difficult. I am sure we will all enjoy "talking" to you in the future.
    Kathryn
  4. karen2002

    karen2002 New Member

    So nice to meet you. This is a great place--with a great bunch of people. As I am new to fm and cfs, I will be looking forward to more posts from you. I have recently ordered a slew of books--and am pouring over them. If I add one more paper or book to my ongoing stacks, my dear hubby is liable to chase me off. This does sound like an interesting , and perhaps I can read it
    in the future. I have come across Devin Starlanyl, a number of times in my research on the internet. Again, Welcome, and post often.
  5. kredca4

    kredca4 New Member

    I also have the Book by Dr. Devin Starlanyl, and I have Printed out her Information sheets that are available on her website.
    To me they and her book have been the best at explaining my Syndromes so that I can understand the information easier.
    her website is listed in her book, have you had the chance to visit it yet?

    I am a Double Whamy, I have the combo of FMS/MPS, plus other co-exisiting conditions, so I was Thrilled to find her book 3 years ago after getting a dx on the FMS.

    Then I found this message board, and it's been a Blessing also in gathering information to help Cope with these ups and downs, that are know as Flares. I still get them, like now, but at least knowing about the dd's has made a Big difference in my life.

    Hope you enjoy the board and make a lot of Friends, there's a lot of good support here and coping tips.

    Sincerely,
    kredca4/sharon
  6. wander

    wander New Member

    Hi Roz
    Welcome. glad you found the books written by Devin Starlanyl she is an M.D. was an emergency room physician. she and mary Ellen Copeland co wrote the book. What wonderful resources they are. And really validate our conditions.
    There is a book coming out end of november called Women Living With Fibromyalgia written by Mari Skelly. I was interviewed for the book. and what is exciting is that Dr. Devin Starlanyl has written the forward for the book.
    Hope you are doing well. She has a wealth of knowledge wish there were more docs and health care workers like her.
    Wander
  7. HOUSEOFBLUES

    HOUSEOFBLUES New Member

    Yes I have this book and two others : "Inside Fibromyalgia"
    by Mark J. Pellegrino, MD....and "What Your Doctor may Not
    Tell You About Fibromyalgia" by R.Paul St. Amand,MD.
    I ordered them recently from Amazon.com.
    They all offer great info on the subject....
    I've also read: "Lupus" My Search For A Diagnosis" by Eileen Radziunas. It tells all about her struggles with getting her Doctors, Family and Friends to believe her about all her symtoms. And like us, She too had a lot of problems trying to find a Good Doctor to correctly diagnose her. It's worth reading....

    LOVE,
    HOUSEOFBLUES[This Message was Edited on 11/13/2002]