Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 Hello Peggy Thanks for your note. How long have you had FM and can I ask what tratment your rheumatologist suggested? The only thing I have is painkillers and physio [when I get my appointment - god knows when that will be]. I have had to give up work. I was just too worn out putting in 40 hours a week at the office and trying to look after my family. I also have wrist problems carpol tunnel syndrome [i'm not sure how to spell that!!] Spk to you soon Ros Hello Hi everyone My name is Ros and I have just been diagnosed as having fibromyalgia. Just found this page and thought I'd say hello. Only just gone on line so all of this is quite new to me. I'm from South Wales in the UK. I am 38 and have been suffering for some time. It was a long time before a doctor would listen to me, I began to think I was going bonkers. I'm sure many of you had the same problems. Well that's all for now. See ya Ros ~*~CHAT TIME:~*~ MON & THURS Day Eastern 4 PM, Central 3 PM, Mt 2 PM Pacific 1 PM Night Eastern 9 Pm, Central 8 Pm, Mt 7 PM Pacific 6 PM WHERE: /chat/ VIP If there is a problem on this list notify. Co-Moderator The_List_Owner@... Add or view links about fibro/CFS. http://www.onelist.com/links/ TO unsubscribe. Go to: http://www.onelist.com/ to this list and unsub from it. ~*~CHAT TIME:~*~ MON & THURS Day Eastern 4 PM, Central 3 PM, Mt 2 PM Pacific 1 PM Night Eastern 9 Pm, Central 8 Pm, Mt 7 PM Pacific 6 PM WHERE: /chat/ VIP If there is a problem on this list notify. Co-Moderator The_List_Owner@... Add or view links about fibro/CFS. http://www.onelist.com/links/ TO unsubscribe. Go to: http://www.onelist.com/ to this list and unsub from it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 Hi Im in England and have just been diagnosed. I have no idea what is going on, the doctors are very unwilling to talk here.Soooo I have be Hi Bernie: Welcome to the List! Great to have you with us. Just so you know, fibro doesn't get much respect here in the U.S. either. I think that all of us have horror stories to tell. But please do tell anyway. Especially if they are entertaining. We all need to have a laugh now and then....daily in fact. Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 > Dear Atta Girl, here are the name of two books that i found very helpful when > i was diagnosed with fibromyalgia and chronic fatique. (1) " Fibromyalgia & > Chronic Myofasical Pain Syndrome: " A survival Guide & (2) " ' The Fibromyalgia > Advocate " > by Devin J. Starlanyl M.D. > from Ala.--aknaynay98@h... > Thanks for the book titles I am going into town on Thursday amd will call at the book store and ask them to get them for me. I think that our disability system is different here but I am sure that there is some relevant info for me there. Sorry that I take so long to answer but my adhd boy wont allow me to use the pc when he is awake(he gets violent) Take care and speak to you again soon bye Bernice. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 > Dear Atta Girl, here are the name of two books that i found very helpful when > i was diagnosed with fibromyalgia and chronic fatique. (1) " Fibromyalgia & > Chronic Myofasical Pain Syndrome: " A survival Guide & (2) " ' The Fibromyalgia > Advocate " > by Devin J. Starlanyl M.D. > from Ala.--aknaynay98@h... > Thanks for the book titles I am going into town on Thursday amd will call at the book store and ask them to get them for me. I think that our disability system is different here but I am sure that there is some relevant info for me there. Sorry that I take so long to answer but my adhd boy wont allow me to use the pc when he is awake(he gets violent) Take care and speak to you again soon bye Bernice. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 > Welcome Attagirl or is it Bernice?, > I am in Kansas, USA. > > > >Hi the name is Bernice but my chat handle is Princess Atta (from bugs life). You have my sympathy it is so hard for people to understand. Im finding it difficult myself. I was a work a holic to, split shifts behind a bar shopping in the afternoon and parteeeee all night. 2 hours sleep and start again. Now I cant even walk my boy to school, and having a hard job proving it, to get some transport for him(I dont drive)I am spending100$about a week just getting him there in a taxi each day. I am finding itembaracing and degrading having to explain all the time to everyone. it is nice to talk to people who understand. > We are not alone....lol. Being new to this I dont have a cluewhen people refer to drugs and conditions associated to fibromyalgia. It is not talked about over here.I think that most doctors think that it is in the head. give her a pill and she will go away. You are lucky that you can pick and choose your doctors much more freely than here.(If you refuse 1 doctor you might not get another here). any way enough for now Take care and see you here soon bye Bernice > > > http://members.tripod.com/~Shue/menu2.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 > Welcome Attagirl or is it Bernice?, > I am in Kansas, USA. > > > >Hi the name is Bernice but my chat handle is Princess Atta (from bugs life). You have my sympathy it is so hard for people to understand. Im finding it difficult myself. I was a work a holic to, split shifts behind a bar shopping in the afternoon and parteeeee all night. 2 hours sleep and start again. Now I cant even walk my boy to school, and having a hard job proving it, to get some transport for him(I dont drive)I am spending100$about a week just getting him there in a taxi each day. I am finding itembaracing and degrading having to explain all the time to everyone. it is nice to talk to people who understand. > We are not alone....lol. Being new to this I dont have a cluewhen people refer to drugs and conditions associated to fibromyalgia. It is not talked about over here.I think that most doctors think that it is in the head. give her a pill and she will go away. You are lucky that you can pick and choose your doctors much more freely than here.(If you refuse 1 doctor you might not get another here). any way enough for now Take care and see you here soon bye Bernice > > > http://members.tripod.com/~Shue/menu2.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Hi Gail, You have come to the right place for support. I am a new member of this group and I am so proud to be able to interact with people who knows what we are going through. My husband was diagnosed with SDS in March of this year. He has to use the wheelchair some days, others he can walk with a cane or walker. We thought he had been having symptoms for four years but after I saw everyone talk about violent dreams, I realized he has had symptoms for at least ten years. I have learned more from this group than I have anywhere else.I may not know a lot of answers for you but if you ever need to talk feel free to email me. Our thoughts and prayers are with you and your family. Dave and Kathy Hello Hello,I've just discovered this group, and I'm glad tofinally find a place for support and (perhaps)answersabout MSA. My husband was diagnosed a little overthree years ago. Initially, he was having 'troublewith his eyes', always squinting, light sensitive,unable to keep them open. After going to a string ofdifferent specialists, we were sent to a neurologist.The doctor almost immediately suspected MSA just bywatching his movements, but was a little unsurebecause of the eye thing. It turns out he hasblepharospasm as well as MSA, but since he has alwaysbeen a 'klutz', we didn't especially notice that hismovement was changing.As it seems with everyone else, we don't know whatcaused the MSA, (he does not have the bp drop thatmany of you speak of)but he had a brain tumor about 25years ago and was on anti-seizure meds for many years.For those of you discussing funny SMELLS, dh says thathe always heard a strange sound and smelled an oddsmell before each seizure. is no longer able to work as things take so muchlonger for him to do, and he does tend to fall now andagain. This is frustrating for someone whose brainstill needs to be occupied, as I'm sure you all know.ABout six months ago the doctor started him on a lowdosage of mirapex, I'm not sure that its accomplishinganything, I think I still see deterioration. Yourdiscussion on VIOLENT DREAMS peaked my interest aswithin the last few months he has experienced severalwhich involved screaming, thrashing, moaning andwhimpering. One he remembers had him back in VietNam.His snoring and the quality of his sleep has alsobecome worse, although sometimes he will sleep forover 12 hours straight.Generally I am impressed with how well he deals withhis problems. He is using a cane when we leave thehouse, but around the house he manages well. We haveinstalled hand rails on both sides of the stairway,and so far that works for him. The bath tub is achallenge, but we have a stall shower, and we have ashower chair for when that becomes neccessary.From time to time, when things seem worse, he mentionsmoving bed, tv, etc. into one room so he doesn't haveso much difficulty. Usually, all I have to do is askif he really thinks its time for that, we'll do itright away and he decides to tough it out a littlelonger.I have been able to learn a little about the diseasefrom links on the internet, but they tend to talkstatistics, not real people experiences. One sourcesays something like 40% are in wheelchairs within 5years- has this been the case for any of you? Thenthere is the really frightening one that says lifeexpectancy from diagnosis is anywhere from 6 to 9years (average), but this depends on which article youread. How long have most of you been dealing withthis disease?I really look forward to hearing from you, when I madean appointment for myself with the neurologist just todiscuss MSA I told him I just didn't understand itvery well, he said, neither do the experts, there isjust so much still unkown. But you all areexperiencing it, so I know you can help us throughthis.Thanks,Gail===== Gailgsouthwick@...__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Hi Gail, welcome aboard although we wish you didn't have to be here. Your letter is really interesting regarding your husband's eye problem. I think from reading other letters the eyes are bothered later in MSA but that's only an observation. My husband Warren was diagnosed last Dec. but really believe he had it much earlier. He is having a lot of problems with his eyes, blurring not being able to distinguish things and especially reading. He's much older than your husband and I think that may be why his eyes are going faster. Warren is very weak and uses a wheel chair a lot, especially when we go out and have to walk long distances. At home I have to nag him to use his walker as he has fallen many times and finally broke his hip last Aug. He's doing well with his new hip, no pain or problems. It is scary when you read a time table for this disease but there are quite a few on this list that have been fighting this for many years and will respond to you I'm sure. Hang in there dear, Hello > > Hello, > > I've just discovered this group, and I'm glad to > finally find a place for support and (perhaps)answers > about MSA. My husband was diagnosed a little over > three years ago. Initially, he was having 'trouble > with his eyes', always squinting, light sensitive, > unable to keep them open. After going to a string of > different specialists, we were sent to a neurologist. > The doctor almost immediately suspected MSA just by > watching his movements, but was a little unsure > because of the eye thing. It turns out he has > blepharospasm as well as MSA, but since he has always > been a 'klutz', we didn't especially notice that his > movement was changing. > > As it seems with everyone else, we don't know what > caused the MSA, (he does not have the bp drop that > many of you speak of)but he had a brain tumor about 25 > years ago and was on anti-seizure meds for many years. > For those of you discussing funny SMELLS, dh says that > he always heard a strange sound and smelled an odd > smell before each seizure. > > is no longer able to work as things take so much > longer for him to do, and he does tend to fall now and > again. This is frustrating for someone whose brain > still needs to be occupied, as I'm sure you all know. > ABout six months ago the doctor started him on a low > dosage of mirapex, I'm not sure that its accomplishing > anything, I think I still see deterioration. Your > discussion on VIOLENT DREAMS peaked my interest as > within the last few months he has experienced several > which involved screaming, thrashing, moaning and > whimpering. One he remembers had him back in VietNam. > His snoring and the quality of his sleep has also > become worse, although sometimes he will sleep for > over 12 hours straight. > > Generally I am impressed with how well he deals with > his problems. He is using a cane when we leave the > house, but around the house he manages well. We have > installed hand rails on both sides of the stairway, > and so far that works for him. The bath tub is a > challenge, but we have a stall shower, and we have a > shower chair for when that becomes neccessary. > From time to time, when things seem worse, he mentions > moving bed, tv, etc. into one room so he doesn't have > so much difficulty. Usually, all I have to do is ask > if he really thinks its time for that, we'll do it > right away and he decides to tough it out a little > longer. > > I have been able to learn a little about the disease > from links on the internet, but they tend to talk > statistics, not real people experiences. One source > says something like 40% are in wheelchairs within 5 > years- has this been the case for any of you? Then > there is the really frightening one that says life > expectancy from diagnosis is anywhere from 6 to 9 > years (average), but this depends on which article you > read. How long have most of you been dealing with > this disease? > > I really look forward to hearing from you, when I made > an appointment for myself with the neurologist just to > discuss MSA I told him I just didn't understand it > very well, he said, neither do the experts, there is > just so much still unkown. But you all are > experiencing it, so I know you can help us through > this. > > Thanks, > Gail > > > ===== > Gail > gsouthwick@... > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 Hello I am the neighbor of a man who has been diagnosed with Shy Drager syndrome and am concerned about him. He and his wife are wonderful people and this disease has broken their hearts and ours. We have watched a healthy individual become a helpless man in a very short time. He has trouble walking, talking, eating and taking his meds. He is incontinent and lives in "the past" the majority of his days. He has not felt like getting out of bed the last few days and refuses to eat or take his medicine. His wife of 51 years is growing very tired, but keeps doing all she can. We do what we can by shopping for them and sitting with him while she runs personal errands. I have read everything I can find via the internet and am discouraged to read that a "cure" is not foreseen as a cause has not been established. I watched this man as he worked for the forestry service and retired to "enjoy" life....only to begin fainting as he stood, his blood pressure dropping......visiting different doctors as he searched for a diagnosis and now he cannot enjoy the simplest of things. I have wondered if his working with chemicals (hand spraying poisons) for years, as his job required, might have caused this disease. Does anyone have any information that might support this idea? Agent Orange caused so many disabling conditions is the Vietnam Veterans it has made me wonder if a "chemical exposure" could be a connection to developing Shy Drager. I would appreciate any ideas of support we can give our friends. And I thank you for making this site available. God Bless, Debby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 Welcome to our group. I would think that if you did sleep during the day, that would be the reason that you had a hard time sleeping at night. I don't sleep well because of the pain. I take pain pills before going to bed along with Trofranil and Clozapam. Take care, Irene > . I also could sleep all day and not think nothing of it. thankfully > my husband Jeff and both my parents help me and understand. Without that Id > be a lot worse off. I haven't been sleeping great ever since the " mono " so I > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 Kathie,,,,,welcome to the group. Sandy.....welcome also. Yes there are alot of drugs to try. Read a few days and ou will see all the stuff others take. Some things work, some don't. It is ' hit or miss' with this DD we have. Your best bet is a rhuemy, but a PCP who has info and knowledge should be able to help you if he is willing to listen and try things. You may have to teach him about fibro. Laurel, hope it all works out for you and you get some answers. ,....... hope you got some sleep and are doing better today. Have a nice day EVERYONE,,,Jan M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 My Primary Doctor does know about FMS. He works with my other two doctors on medication and tests that need to be done. A lot of doctors do not believe in FMS and there in lies the rub. Irene > Your best bet is a > rheumy, but a PCP who has info and knowledge should be able to help you > if he is willing to listen and try things. You may have to teach him > about fibro. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 Hi Fay, I definitely have the lack of energy, it gets harder and harder to make it through work each week. I just went back to my doctor yesterday complaining about it again. I had complained to her about 4 years ago, when it wasn't nearly so bad, and she just told me to cut back my life. Well, I've cut almost everything out except work, and some days I think that's going to have to go too. She heard me this time, and is starting blood work on me to see what they can find. If they come up with anything, I'll post it to the group. I also am going to see a neurologist next week for the first time too, so I'm hoping she'll run some tests that might help as well. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 Hi Fay, I definitely have the lack of energy, it gets harder and harder to make it through work each week. I just went back to my doctor yesterday complaining about it again. I had complained to her about 4 years ago, when it wasn't nearly so bad, and she just told me to cut back my life. Well, I've cut almost everything out except work, and some days I think that's going to have to go too. She heard me this time, and is starting blood work on me to see what they can find. If they come up with anything, I'll post it to the group. I also am going to see a neurologist next week for the first time too, so I'm hoping she'll run some tests that might help as well. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 My name is . I live in Ottawa, Ontario. I'm 25 years old and I've been tired forever! I was diagnosed with cfs on friday. I am unable to work because of my fatigue and I'm looking for solutions so that I can have some sort of life. Hi , welcome to the group. Unfortunately, I don't have any ideas for you. I'm really tired most of the time and are on the verge of having to give up work, if I don't come up with something. I've cut back on everything I do, and still am tired. I had a hard time struggling out of bed to come to work, this morning, but, I did make it. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 Hi : Welcome! I understand your feelings and hear what your saying. We've all been where you're at right now so don't feel that you are alone. We are here to listen and help whenever possible. Here are a few suggestions: The *book listed below is a GREAT place to start. When you start reading this book you might feel overwhelmed at first but that is to be expected. Just remember, the group is here to listen or offer suggestions if you need us. This is a WONDERFUL group of caring individuals. Feel free to ask questions at anytime. Just jump right in! Sending positive energy your way, Jazzy " I was born precious, I am precious, and I shall die precious " *GREAT BOOK! " Fibromyalgia & Chronic Myofascial Pain Syndrome; A Survival Manual " Written by: Devin Starlanyl , M.D. and Ellen Copeland, M.S., M.A. Resources Books and Publications Fibromyalgia Syndrome: An Informational Guide for FMS Patients, Their Families,... Author: , MD Publisher: National Fibromyalgia Research Association PO Box 500 Salem OR 97308 Web Site: www.myalgia.com Comments: Diagnosis, treatment, epidemiology, and exercise information Price: 50 copies for $10 Making Sense of Fibromyalgia Authors: Wallace, MD and Janice Brock Publisher: Oxford University Press 198 Madison Avenue New York, NY 10016-6314 Price: $25.00 - Available at bookstores Comments: Noted medical writer Janice Brock and Dr. J. Wallace, a leading expert on this disorder, provide a comprehensive guide, for both patients and professionals, to this little known and poorly understood syndrome. Multi-Disciplinary Approaches to Fibromyalgia Publisher: Anadem Publishing, Inc. 3620 North High Street Columbus, OH 43214 Fax: Web Site: www.anadem.com Price: $25.00 + $3.50 shipping and handling, VISA and MasterCard accepted Comments: A synopsis of materials presented at the first ever New York Fibromyalgia Conference. A potpourri of information on FM, both from professionals who spoke at the May '98 FM conference in New York and other FM people who agreed to contribute. The Fibromyalgia Help Book Authors: Fransen, RN and I. Jon , MD Publisher: House Press Order From: Fransen & Associates 1729 Lois Drive Shoreview, MN 55126 Easy to read and understand, conveys state-of-the-art information concerning FMS that will be helpful to patients as well as health care providers. Price: $18.95 + $4.00 shipping and handling The Fibromyalgia Survivor (and other publications) Author: Mark Pellegrino, MD Publisher: Anadem Publishing Co 3620 N High Street Columbus, OH 43214 Telephone: Price: $23.00 (price includes shipping) Fibromyalgia Syndrome and Chronic Fatigue Syndrome in Young People Author: Thorson Publisher: Health Information Network, Inc Orders: Fibromyalgia Network PO Box 31750 Tucson, AZ 85751-1750 Comments: A guide for parents. Price: $10.00 Videos Fibromyalgia Stretch Video & Strength and Toning Video Order: Oregon Fibromyalgia Foundation 1221 S.W. Yamhill, Suite 303 Portland, OR 97205 These videos offer comprehensive stretching and strength & toning regimens developed by exercise physiologist Sharon , Ph.D., FNP, specifically for people with FMS. Fibromyalgia patients are shown demonstrating these unique stretching and strength & toning programs. Price: $20 each + $5 shipping and handling for 1st tape, $3 S/H for additional tapes * Fibromyalgia Association of Greater Washington DC Address: 140 Zinn Way Linden, VA 22642-5609 Telephone: Toll Free Fax: Web Site: www.fmagw.org Newsletters Fibromyalgia Frontiers Order: Fibromyalgia Frontiers 140 Zinn Way Linden, VA 22642-5609 A quarterly publication of the Fibromyalgia Association of Greater Washington, Inc. Information regarding FMS research advances, treatment ideas, conventions, and resources. Price: $25.00 annual membership and $12 annually for students. FM Aware Order: National Fibromyalgia Awareness Campaign 2415 North River Trail Road, #200 Orange, CA 92865 Telephone: A quarterly publication with the goal in mind of improving the quality of life for people with Fibromyalgia by increasing awareness. Price: $25.00 annual membership *The CFIDS Chronicle Order: The CFIDS Association of America, Inc. PO Box 220398 Charlotte, NC 28222-0398 Telephone: A quarterly publication aimed at reporting the most current CFIDS/FMS research information. Other publications available as well as information about the association and member benefits. Price: $35 annual membership To Your Health and Healthpoints Order: To Your Health 17007 East Colony Drive, Suite 105 Fountain Hills, AZ 85268 Telephone: A free resource catalogue and newspaper for FMS, CFIDS, arthritis, and chronic pain. Features vitamins and health products developed specifically for FMS and CFIDS making hard-to-find, recommended nutritional supplements available to Fibromyalgia and Chronic Fatigue Syndrome sufferers at a manufacturer-direct low price. Price: Free Healthwatch Order: CFIDS and Fibromyalgia Health Resource A patient owned organization Telephone: Web Site: www.immunesupport.com/afme Healthwatch serves Fibromyalgia and Chronic Fatigue Syndrome sufferers by focusing on three primary objectives: 1) reporting the latest news in Fibromyalgia and Chronic Fatigue Syndrome research and treatment; 2) making hard-to-find, recommended nutritional supplements available to Fibromyalgia and Chronic Fatigue Syndrome sufferers at a manufacturer-direct low prices, and, most importantly; 3) raising much needed funds for Fibromyalgia and Chronic Fatigue Syndrome medical research. Price: Free Professional Medical Journals and Magazines Journal of Musculoskeletal Pain Publisher: Haworth Medical Press 10 Alice Street Binghamton, NY 13904 Telephone: A peer reviewed medical journal containing FMS scientific abstract information. Appropriate for medical professionals as well as amateur. A quarterly publication. Price: $36.00 annual subscription Journal of the Chronic Fatigue Syndrome Publisher: Haworth Medical Press 10 Alice Street Binghamton, NY 13904 Telephone: A peer reviewed medical journal containing CFIDS scientific abstract information. Appropriate for patients as well as medical professionals. A quarterly publication. Price: $36.00 annual subscription Medical Professional Contacts Neurosurgeon Dan Heffez, MD Address: 2515 North Street, Suite 801 Chicago, IL 60614 Telephone: Media Dateline NBC Web Address: www.msnbc.com 02/04/00 Debate Over Fibromyalgia 12/14/99 Someone To Watch Over Me PBS Healthweek Web Address: www.pbs.org/healthweek/hwfront.htm 02/02/00 Chronic Fatigue ABC 20/20 Web Address: www.abcnews.go.com 03/10/00 Surgery for FM/CFIDS? Wall Street Journal Web Address: www.wsj.com 11/11/99 High Hopes, Surgery on the Skull for Chronic Fatigue? Baltimore Sun Web Address: www.sunspot.net 11/19/99 Answered Prayers Organizations National Fibromyalgia Awareness Campaign (NFAC) Address: 2415 N. River Trail Road, #200 Orange, CA 92865 Telephone: Fax: E-Mail: nfac1@... Web Site: www.fmaware.com Improving the quality of life for people with Fibromyalgia by increasing awareness. National Institute of Arthritis, Musculoskeletal, and Skin Diseases Address: PO Box AMS 9000 Rockville Pike Bethesda, MD 20892 Free packet of fibromyalgia information distributed by the National Institute of Arthritis Musculoskeletal and Skin Diseases containing lists of fibromyalgia organizations, a glossary, the American College of Rheumatology's Fact Sheet, and several FMS articles written by experts. International MyoPain Society Telephone: (USA) Fax: (USA) E-Mail: Web Site: www.myopain.org CFIDS Association of America, Inc. Address: PO Box 220398 Charlotte, NC 28222-0398 Telephone: Web Site: www.cfids.org Provides information, advocacy, research information and encouragement for the CFIDS community. Also provides data on treatment, support groups and conferences. Web Sites and E-Mail Addresses World Arnold Chiari Malformation Association Web Address: www.pressenter.com/~wacma American Syringomyelia Alliance Project, Inc. Web Address: www.asap4sm.com Orthospine (spinal stenosis) Web Address: www.orthospine.com National Dysautonomia Research Foundation Web Address: www.ndrf.org Betsy sen Comment: FM Resources E-Mail: Fibrobetsy@... Lauri Hogle Comment: FM patient who had craniectomy surgery for Chiari E-Mail: Tamara Comment: FM patient who had laminectomy surgery for congenital spinal stenosis E-Mail: metamm25@... Kuenzi Comment: FM patient who had craniectomy surgery for Chiari National Fibromyalgia Research Association PO Box 500, Salem, OR 97302 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 Hi : Welcome! I understand your feelings and hear what your saying. We've all been where you're at right now so don't feel that you are alone. We are here to listen and help whenever possible. Here are a few suggestions: The *book listed below is a GREAT place to start. When you start reading this book you might feel overwhelmed at first but that is to be expected. Just remember, the group is here to listen or offer suggestions if you need us. This is a WONDERFUL group of caring individuals. Feel free to ask questions at anytime. Just jump right in! Sending positive energy your way, Jazzy " I was born precious, I am precious, and I shall die precious " *GREAT BOOK! " Fibromyalgia & Chronic Myofascial Pain Syndrome; A Survival Manual " Written by: Devin Starlanyl , M.D. and Ellen Copeland, M.S., M.A. Resources Books and Publications Fibromyalgia Syndrome: An Informational Guide for FMS Patients, Their Families,... Author: , MD Publisher: National Fibromyalgia Research Association PO Box 500 Salem OR 97308 Web Site: www.myalgia.com Comments: Diagnosis, treatment, epidemiology, and exercise information Price: 50 copies for $10 Making Sense of Fibromyalgia Authors: Wallace, MD and Janice Brock Publisher: Oxford University Press 198 Madison Avenue New York, NY 10016-6314 Price: $25.00 - Available at bookstores Comments: Noted medical writer Janice Brock and Dr. J. Wallace, a leading expert on this disorder, provide a comprehensive guide, for both patients and professionals, to this little known and poorly understood syndrome. Multi-Disciplinary Approaches to Fibromyalgia Publisher: Anadem Publishing, Inc. 3620 North High Street Columbus, OH 43214 Fax: Web Site: www.anadem.com Price: $25.00 + $3.50 shipping and handling, VISA and MasterCard accepted Comments: A synopsis of materials presented at the first ever New York Fibromyalgia Conference. A potpourri of information on FM, both from professionals who spoke at the May '98 FM conference in New York and other FM people who agreed to contribute. The Fibromyalgia Help Book Authors: Fransen, RN and I. Jon , MD Publisher: House Press Order From: Fransen & Associates 1729 Lois Drive Shoreview, MN 55126 Easy to read and understand, conveys state-of-the-art information concerning FMS that will be helpful to patients as well as health care providers. Price: $18.95 + $4.00 shipping and handling The Fibromyalgia Survivor (and other publications) Author: Mark Pellegrino, MD Publisher: Anadem Publishing Co 3620 N High Street Columbus, OH 43214 Telephone: Price: $23.00 (price includes shipping) Fibromyalgia Syndrome and Chronic Fatigue Syndrome in Young People Author: Thorson Publisher: Health Information Network, Inc Orders: Fibromyalgia Network PO Box 31750 Tucson, AZ 85751-1750 Comments: A guide for parents. Price: $10.00 Videos Fibromyalgia Stretch Video & Strength and Toning Video Order: Oregon Fibromyalgia Foundation 1221 S.W. Yamhill, Suite 303 Portland, OR 97205 These videos offer comprehensive stretching and strength & toning regimens developed by exercise physiologist Sharon , Ph.D., FNP, specifically for people with FMS. Fibromyalgia patients are shown demonstrating these unique stretching and strength & toning programs. Price: $20 each + $5 shipping and handling for 1st tape, $3 S/H for additional tapes * Fibromyalgia Association of Greater Washington DC Address: 140 Zinn Way Linden, VA 22642-5609 Telephone: Toll Free Fax: Web Site: www.fmagw.org Newsletters Fibromyalgia Frontiers Order: Fibromyalgia Frontiers 140 Zinn Way Linden, VA 22642-5609 A quarterly publication of the Fibromyalgia Association of Greater Washington, Inc. Information regarding FMS research advances, treatment ideas, conventions, and resources. Price: $25.00 annual membership and $12 annually for students. FM Aware Order: National Fibromyalgia Awareness Campaign 2415 North River Trail Road, #200 Orange, CA 92865 Telephone: A quarterly publication with the goal in mind of improving the quality of life for people with Fibromyalgia by increasing awareness. Price: $25.00 annual membership *The CFIDS Chronicle Order: The CFIDS Association of America, Inc. PO Box 220398 Charlotte, NC 28222-0398 Telephone: A quarterly publication aimed at reporting the most current CFIDS/FMS research information. Other publications available as well as information about the association and member benefits. Price: $35 annual membership To Your Health and Healthpoints Order: To Your Health 17007 East Colony Drive, Suite 105 Fountain Hills, AZ 85268 Telephone: A free resource catalogue and newspaper for FMS, CFIDS, arthritis, and chronic pain. Features vitamins and health products developed specifically for FMS and CFIDS making hard-to-find, recommended nutritional supplements available to Fibromyalgia and Chronic Fatigue Syndrome sufferers at a manufacturer-direct low price. Price: Free Healthwatch Order: CFIDS and Fibromyalgia Health Resource A patient owned organization Telephone: Web Site: www.immunesupport.com/afme Healthwatch serves Fibromyalgia and Chronic Fatigue Syndrome sufferers by focusing on three primary objectives: 1) reporting the latest news in Fibromyalgia and Chronic Fatigue Syndrome research and treatment; 2) making hard-to-find, recommended nutritional supplements available to Fibromyalgia and Chronic Fatigue Syndrome sufferers at a manufacturer-direct low prices, and, most importantly; 3) raising much needed funds for Fibromyalgia and Chronic Fatigue Syndrome medical research. Price: Free Professional Medical Journals and Magazines Journal of Musculoskeletal Pain Publisher: Haworth Medical Press 10 Alice Street Binghamton, NY 13904 Telephone: A peer reviewed medical journal containing FMS scientific abstract information. Appropriate for medical professionals as well as amateur. A quarterly publication. Price: $36.00 annual subscription Journal of the Chronic Fatigue Syndrome Publisher: Haworth Medical Press 10 Alice Street Binghamton, NY 13904 Telephone: A peer reviewed medical journal containing CFIDS scientific abstract information. Appropriate for patients as well as medical professionals. A quarterly publication. Price: $36.00 annual subscription Medical Professional Contacts Neurosurgeon Dan Heffez, MD Address: 2515 North Street, Suite 801 Chicago, IL 60614 Telephone: Media Dateline NBC Web Address: www.msnbc.com 02/04/00 Debate Over Fibromyalgia 12/14/99 Someone To Watch Over Me PBS Healthweek Web Address: www.pbs.org/healthweek/hwfront.htm 02/02/00 Chronic Fatigue ABC 20/20 Web Address: www.abcnews.go.com 03/10/00 Surgery for FM/CFIDS? Wall Street Journal Web Address: www.wsj.com 11/11/99 High Hopes, Surgery on the Skull for Chronic Fatigue? Baltimore Sun Web Address: www.sunspot.net 11/19/99 Answered Prayers Organizations National Fibromyalgia Awareness Campaign (NFAC) Address: 2415 N. River Trail Road, #200 Orange, CA 92865 Telephone: Fax: E-Mail: nfac1@... Web Site: www.fmaware.com Improving the quality of life for people with Fibromyalgia by increasing awareness. National Institute of Arthritis, Musculoskeletal, and Skin Diseases Address: PO Box AMS 9000 Rockville Pike Bethesda, MD 20892 Free packet of fibromyalgia information distributed by the National Institute of Arthritis Musculoskeletal and Skin Diseases containing lists of fibromyalgia organizations, a glossary, the American College of Rheumatology's Fact Sheet, and several FMS articles written by experts. International MyoPain Society Telephone: (USA) Fax: (USA) E-Mail: Web Site: www.myopain.org CFIDS Association of America, Inc. Address: PO Box 220398 Charlotte, NC 28222-0398 Telephone: Web Site: www.cfids.org Provides information, advocacy, research information and encouragement for the CFIDS community. Also provides data on treatment, support groups and conferences. Web Sites and E-Mail Addresses World Arnold Chiari Malformation Association Web Address: www.pressenter.com/~wacma American Syringomyelia Alliance Project, Inc. Web Address: www.asap4sm.com Orthospine (spinal stenosis) Web Address: www.orthospine.com National Dysautonomia Research Foundation Web Address: www.ndrf.org Betsy sen Comment: FM Resources E-Mail: Fibrobetsy@... Lauri Hogle Comment: FM patient who had craniectomy surgery for Chiari E-Mail: Tamara Comment: FM patient who had laminectomy surgery for congenital spinal stenosis E-Mail: metamm25@... Kuenzi Comment: FM patient who had craniectomy surgery for Chiari National Fibromyalgia Research Association PO Box 500, Salem, OR 97302 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Hello , I am sorry that I don't have any ideas for solutions for the tiredness in your life. So far there is not much help out there. We are all tired but some of those that will answer may be able to give you a glimmer of hope. This is a good support group. They will answer questions and try and help if they can. Once again I am glad that you are with us and I hope that we can help. Take care, Irene CO-moderator > > My name is . I live in Ottawa, Ontario. I'm 25 years old and I've been > tired forever! I was diagnosed with CFS on Friday. I am unable to work > because of my fatigue and I'm looking for solutions so that I can have some > sort of life. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Hi ! Welcome to the group! Please let us know if you have any questions or concerns - we are really great with advice here!! Hugs, Jen bglscout77 wrote: Hi all, I just found this site so I figured that I would stop by and say hi. I am in process of being approved and have an appointment on Jan 22 with the nutritionist. I will be checking back and hope to see you all again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Hi ! Welcome to the group! Please let us know if you have any questions or concerns - we are really great with advice here!! Hugs, Jen bglscout77 wrote: Hi all, I just found this site so I figured that I would stop by and say hi. I am in process of being approved and have an appointment on Jan 22 with the nutritionist. I will be checking back and hope to see you all again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 --- Welcome !! This site is an amazing source of information and more importantly support from people actually living this journey. Again Welcome and ask anything !!! In gastric-bypass-support-kaiser- patients , " bglscout77 " <bglscout77@y...> wrote: > Hi all, > > I just found this site so I figured that I would stop by and say hi. > > I am in process of being approved and have an appointment on Jan 22 > with the nutritionist. > > I will be checking back and hope to see you all again. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 ---Thursdays I have Physical Science class at night and today I had dentist appt in the morning before work. Whew didnt have time to check in. But I graduate from Los Medanos College on May 28th !!! Yipee no more school after that !!!! In gastric-bypass-support-kaiser-patients , " Shell " <shells793@y...> wrote: > Were the heck is everyone today? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Wow, ... you're graduating??? So many good things happening for you! It's nice to hear when someone gets a wave of good things coming their way. Surely, it's all the result of your determination and hard work. Way to go! Gemello -133 lbs > > Were the heck is everyone today? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Hi everyone! Sure is quiet in here. I hope your all having a wonderful day! I had a great birthday on sat. I no I say it allot but I am one lucky women! is the most amazing man on earth!! Shell <...who is now 41!!! Yippy -165 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Hi Shell, Happy late Birthday !!!! Im not far behind you..I will be 40 on June 7th. Huggles In gastric-bypass-support-kaiser-patients , " Shell " <shells793@y...> wrote: > Hi everyone! Sure is quiet in here. I hope your all having a > wonderful day! I had a great birthday on sat. I no I say it allot > but I am one lucky women! is the most amazing man on earth!! > Shell <...who is now 41!!! Yippy > -165 Quote Link to comment Share on other sites More sharing options...
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