Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 Hi Joni; My name is , and I also have Fibromyalgia/Myofacial,etc.. Welcome to the group, there are a lot of nice people here, and is a good place to come when you need support,information, or just someone to talk to. But if my memory serves me right, I think you're the only one that mentioned also having Myofacial Syndrome. Was just wondering if you have lumps, and if so, what help you are getting for relief of them. So far they have me going to auqua therapy, but seems to be getting worse.Again welcome and glad you found us....(morton) > Hello everyone, > my name is Joni and I am very new to this fibromyalgia group. I have > had fibro for 11 years now, symptoms started following my first car > accident. Unfortunately, I have now been in 4 car accidents, none of > them my fault, and one of them was as recent as three weeks ago. I > have been in a really bad flare ever since with the whiplash > compounding the problems with the fibromyalgia/myofacial pain > syndrome. I also have tmj, migraines and a herniated disk (neck) in > which I am struggling with. I am married and have one young teenage > son. I was just wondering if anyone has found anything that works for > them to ease the symptoms/pain of a bad flare? This is one of those > flares that seems like it is never ending. Hope to meet you all in > the chats soon. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 > hi, it has been suggested that i introduce myself... i attempted to > do so by using my outlook express's reply command, but it doesn't > look as if that worked... so i will use the egroup's mailer... > > name is > location is southern Kentucky > > not officially diagnosed as a fibro victim, but doc suspects it and > is attempting to eliminate everything else as a possibility before > she puts the official seal on it... > > i have suspected it for a long time, my mother has it (officially > diagnosed) and my symptoms > are quite similar... > > i am not severe yet... i am wondering if this is a continous > development or have i gotten as bad as i am going to get... > > seeya! , Sorry to hear that Fibro has claimed another victim. I had a very long process of having to go through all the testing to eliminate all other possible causes for my symptoms, and it's not an easy road to a confirmed diagnosis of Fibro. Lyme disease, and the early stages of MS, not to mention numerous other diseases and conditions, have very similar symptoms to Fibro. There is no rhyme or reason as to how severe your symptoms will become, and only time will tell. As for the exact symptoms you will have, again there's no telling. Even with a confirmed diagnosis, the symptoms you will have (and there are MANY with fibro) and how often they'll kick in is impossible to discern. Good luck!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 In my case, it has gotten more severe over time. At the beginning, I was able to do a lot more than I can now. Now I have terrible pain and have to spend a lot or most of my time in bed. I was a very active woman and this is very hard on me. I do like to read so I am doing a lot of that when I feel up to it. My husband is very helpful and supportive as is my daughter who, with my granddaughters, live next door. Irene > > I am not severe yet... I am wondering if this is a continuos > development or have I gotten as bad as I am going to get... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 To in N. Kentucky, Welcome to our group! How old are you? Most of us, I believe, have had a " touch " of RLS our whole lives, but it does seem to increase with age. Is your mother on any medication? Colette, S. FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 I'm going to try this again! To in SOUTHERN Kentucky - I also belong to an e-list for RLS (restless legs syndrome) and responded to your fibro letter by asking you about RLS! SO! Is your Mother on any medication for her fibromyalgia? Colette, S. FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 if you are as bad as you're going to get you're one of the lucky ones. Everyone has different symptoms and different rates. Doctors swear that it's not progressive, patients swear it is. Think about it though, even a non FMS person gets more aches and pains as they grow older, theier health also deteriorates as they grow older, their minds also deteriorate as they grow older, so naturally we are going to have that on top of our FMS and that will make it seem like it's progressive. Then of course you have to throw in contributing factors, cooporative spouse and friends, vs the non- cooperative ones, whether you are still able to work. Whether or not you have enough free hours in the day to spent on self-maintenance vs taking care of a spouse and kids. Whether or not you have co-existing conditions. How much money you have to experiment with products that may or may not help. Whether or not you have access to a pool and/or hot tub. Bottom line- the answer is- Maybe. ** , Stinky's caretaker** Just to be is a blessing. Just to live is holy. Rabbi Heschel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Hi , Welcome to the group, I am sure you will find the group a wonder source of information and support I know I have I am very excited to have found it.. Where are you from ? As for the head aches with to much fat, I too get head aches bad just before an attack and during actually.. this disease seems to affect every part of our bodys, eatting sleeping hurting, I am a 36 year old female that was told in May of 2000 that I have chronic pancreatis, been through alot in the past 8 mo, and are still unable to get my counts normal, I haven't been as bad as alot in the group but I am so happy to have found this group they have helped me so much I thank god everyday for the group... and I hope you find it as useful..give me some info on yourself if you don't mind.. and again Welcome.... Hoping you have a pain free day Your pancreatis pal From Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 I to suffer from headaches migranes which I feel are sometimes triggered by a pancreatic attack because I seem to get more when I have an attack . I agree that every part of your body is affected when you have a severe attack. I have a question are any other members Canadian or are you all American? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 > Hello everybody :-) > > I am so excited to have found you all. Hi , You are definitely in the right place. Where do you live? You have obviously lived with this for a long time. Do you know what caused it? I am relatively new to the disease, having been diagnosed in March of this year. But I have had nothing but problem after problem, so if feels as if it has been a lifetime. I am currently on tpn. I try to stay upbeat about it, but when it consumes your entire life, it is hard. Well, welcome! Glad you are aboard! Be well, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Hello everybody :-) I am so excited to have found you all. I have had chronic pancreatitis since March of 1989. I have always felt very alone because I have not known any one with pancrease problems. I am a forty year old Christian man that loves food a lot and has to fight the desire to eat fatty foods most everyday. Sometimes I think that I am crazy because I desire to eat foods that can kill me and almost did in 1989. When I had my first pancreas attack I was not expected to live through it, but God had other plans for HI It is nice to meet you. Where are you from? I am sorry you have to deal with this terrible disease. You will find everyone to be quite helpful and very nice! Where do you live? God Bless, Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 In a message dated 11/30/00 2:12:13 AM Eastern Standard Time, mhk60@... writes: << Hello everybody :-) I am so excited to have found you all. I have had chronic pancreatitis since March of 1989. I have always felt very alone because I have not known any one with pancrease problems. I am a forty year old Christian man that loves food a lot and has to fight the desire to eat fatty foods most everyday. Sometimes I think that I am crazy because I desire to eat foods that can kill me and almost did in 1989. When I had my first pancreas attack I was not expected to live through it, but God had other plans for me. I have one Question I would like to ask, and that is: Is there any one that has problems with headaches when they have had to much fat? almost all the time after I have a pancreas attack, I get real bad headaches for a few days. I am looking forward to getting to know everybody and hope I can be as much help as I know you will all be to me. I wish you all a day without pain and one full of Joy! >> Hi , welcome to the group. I don't get bad head aches. I guess I am in so much pain I don't notice my head hurting. I think it hurts but not bad. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 In a message dated 11/29/00 11:12:11 PM Pacific Standard Time, mhk60@... writes: << I am looking forward to getting to know everybody and hope I can be as much help as I know you will all be to me. I wish you all a day without pain and one full of Joy! >> , Welcome to the group. I like you am so glad to have found this site. Everyone here is so helpful and uplifting to me. I'm sure you'll find them to be the same. Can you give us a little of your story? As far as the headaches, I don't get them very often but when I do they put me to bed. I think a lot of the time it's the stress that causes the headaches. With me anyway. Well, friend, jump right in here and welcome again. Wishing you a pain free day. Terri L. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Nice to meet you Barb....I am new too. Jill/California New to the Group Hi...My name is Barb and I live in Topeka, Ks and have been ill for with CFS for the past decade but was able to continue to work up until 1998 when I had viral menningitis and never recovered from that crash. After many many doctors, I'm fortunate to have found Dr. ph Brewer in Kansas City who I've worked with for the past three years. He is compassionate, understands the disease, and is constatnly seeking and researching definitive diagnostic tools, cause and treatment. Since I live 85 miles from Kansas City, I also doctor with a primary care physician in Topeka. While not knowledgeable about CFS, he has been open and willing to learn and after 3 years has become very supportive of Dr. Brewer's treatment. Dr. Brewer is probably responsible for saving me from a serious stroke. At about the same time that Dr. Brewer began testing his CFIDS patients for Hyercoaguable [sp?] Syndrome last fall, I was hospitalized in Topeka for what was presenting itself like a stroke. When no clot or bleed was found I was sent home but continued to experience " stroke-like spells " until I was able to get to Kansas City. Dr. B ran extensive blood work, diagnosed Hypercoaguable syndrome and TIAs. He put me on Lovenox for 30 days and then Coumadin for maintenance. The TIA spells immediately stopped and I've had no more except for when I had to go off coumadin for a week to have an endoscopy. I also experience a great deal of muscle and joint pain, migraine headaches [15-20 a month], glaucoma, IBS and other digestive problems, brain fog, severe fatigue and lots of ear and throat infections. All of this has also meant giving up my profession and going on disability. Other than various meds to relieve symptoms, the coumadin for Hypercoaguable Syndrome, I take Transfer Factor 560 [Colostrum for active HHVS]. I look forward to discussions of the group and getting to know the people on the list....Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Nice to meet you Barb....I am new too. Jill/California New to the Group Hi...My name is Barb and I live in Topeka, Ks and have been ill for with CFS for the past decade but was able to continue to work up until 1998 when I had viral menningitis and never recovered from that crash. After many many doctors, I'm fortunate to have found Dr. ph Brewer in Kansas City who I've worked with for the past three years. He is compassionate, understands the disease, and is constatnly seeking and researching definitive diagnostic tools, cause and treatment. Since I live 85 miles from Kansas City, I also doctor with a primary care physician in Topeka. While not knowledgeable about CFS, he has been open and willing to learn and after 3 years has become very supportive of Dr. Brewer's treatment. Dr. Brewer is probably responsible for saving me from a serious stroke. At about the same time that Dr. Brewer began testing his CFIDS patients for Hyercoaguable [sp?] Syndrome last fall, I was hospitalized in Topeka for what was presenting itself like a stroke. When no clot or bleed was found I was sent home but continued to experience " stroke-like spells " until I was able to get to Kansas City. Dr. B ran extensive blood work, diagnosed Hypercoaguable syndrome and TIAs. He put me on Lovenox for 30 days and then Coumadin for maintenance. The TIA spells immediately stopped and I've had no more except for when I had to go off coumadin for a week to have an endoscopy. I also experience a great deal of muscle and joint pain, migraine headaches [15-20 a month], glaucoma, IBS and other digestive problems, brain fog, severe fatigue and lots of ear and throat infections. All of this has also meant giving up my profession and going on disability. Other than various meds to relieve symptoms, the coumadin for Hypercoaguable Syndrome, I take Transfer Factor 560 [Colostrum for active HHVS]. I look forward to discussions of the group and getting to know the people on the list....Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Nice to meet both of you. I hope that this list helps and gives you support when needed and we are here to help when needed. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2001 Report Share Posted March 18, 2001 Welcome to the newbies!!!! Jillie/California Re: New to the Group Nice to meet both of you. I hope that this list helps and gives you support when needed and we are here to help when needed. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2001 Report Share Posted November 29, 2001 IS the midwife familiar with surgery? Sometimes if they are not they expect more of weight gain. If you are still losing fat you may be just losing faster than the baby is growing. It doesn't neccessariy indicate any problem wth the baby at all. If there is a great concern they can do a sonogram to check the baby's development and assure you and themselves. If the baby is only a few pounds (3-4, I'm not sure what average is at this point) and you have lost a little more fat, that on top of having a hard first trimester, probably means everything is fine But ask for a sonogram if you are worried. Lenore New to the group Hi, my name is Sue Ann and after trying for over 8 years I am 6.5 months pregnant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2001 Report Share Posted November 29, 2001 IS the midwife familiar with surgery? Sometimes if they are not they expect more of weight gain. If you are still losing fat you may be just losing faster than the baby is growing. It doesn't neccessariy indicate any problem wth the baby at all. If there is a great concern they can do a sonogram to check the baby's development and assure you and themselves. If the baby is only a few pounds (3-4, I'm not sure what average is at this point) and you have lost a little more fat, that on top of having a hard first trimester, probably means everything is fine But ask for a sonogram if you are worried. Lenore New to the group Hi, my name is Sue Ann and after trying for over 8 years I am 6.5 months pregnant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2001 Report Share Posted November 29, 2001 Hi Sue Ann! CONGRATS!! I agree with Lenore, I have been pretty sick during my pregnancy (34 weeks now) and had many many sonograms due to a cone biopsy I had done over 5 years ago. (so they wanted to continually check the length of my cervix) With the sonogram they could tell me the baby was right on target with size and weight and development. Also, the doctor said the most weight gain would happen in the last trimester and he was so laid back about me loosing and not gaining and said that MANY of his patients who had lost a lot of weight just didn't gain it during pregnancy. This was quite a relief to hear...I mean you still worry which I think everyone does wether or not you are eating, but it helps to hear it's ok over and over again. Good luck to you!! ~Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Hi Sue Ann..........WELCOME and CONGRATS! Dee P.G. New to the group > Hi, my name is Sue Ann and after trying for over 8 years I am 6.5 > months pregnant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 CONGRATULATIONS - !!!!!!!!!!! New to the group > Hi, my name is Sue Ann and after trying for over 8 years I am 6.5 > months pregnant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Congratulations girly........cna I ask you a question or two? Were you having a hard time ttc in the past preop? How long did it take before your cycles became regular? susan New to the group Hello all. I took a HPT the other day and WHAMMO, I'm preggo. We've been sorta trying (grin). I haven't confirmed with my doctor yet. That is my next step. But I went ahead and joind this list because quite frankly when I put in 'ossg' and 'pregnancy' in the search, I didn't expect to find anything. The number of OSSG lists has quadruples since I first started looking (and joined ) ossg lists a year ago. I had my surgery in Melbourne, FL with Dr. Tenewitz over a year ago. Because of the distance and right now I cannot drive (long story ending in a rt leg bk amputation) right now, I havent consulted him. I was hoping to gain some insite on what to look forward to as an wls person being preggo. My name is . I am 32yrs old and this will be my first child ever. woohoo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Congratulations girly........cna I ask you a question or two? Were you having a hard time ttc in the past preop? How long did it take before your cycles became regular? susan New to the group Hello all. I took a HPT the other day and WHAMMO, I'm preggo. We've been sorta trying (grin). I haven't confirmed with my doctor yet. That is my next step. But I went ahead and joind this list because quite frankly when I put in 'ossg' and 'pregnancy' in the search, I didn't expect to find anything. The number of OSSG lists has quadruples since I first started looking (and joined ) ossg lists a year ago. I had my surgery in Melbourne, FL with Dr. Tenewitz over a year ago. Because of the distance and right now I cannot drive (long story ending in a rt leg bk amputation) right now, I havent consulted him. I was hoping to gain some insite on what to look forward to as an wls person being preggo. My name is . I am 32yrs old and this will be my first child ever. woohoo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 In a message dated 1/11/2002 5:20:52 PM Eastern Standard Time, seashell214@... writes: > Congratulations girly........cna I ask you a question or two? Were you > having a hard time ttc in the past preop? How long did it take before your > cycles became regular? Ummm susan (thanks for the congrats), what's ttc? I only had 2 weird cycles after surgery. One month I came on 2x and one month I didn't come on at all.. but that was following the 2x month. After that I was regular. I had my surgery oct 2000, started taking bc pills in may 2001 (ok, I was being celibate before then) but then stoped in August 2001 because I was on antibiotics. My man and I discussed it and I didn't go back on (well I was on antibiotics until after my amputation in Nov 01) and didn't do anything else cause we want a lil us. (grin).. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Hey monica, It's me Carla from the ossg central Florida group you are on. I am pregnant too, but you probably knew that fromt he other group. Congratulations, that is too cool. I am happy for you and " your man " . Take care and best wishes. Carla New to the group Hello all. I took a HPT the other day and WHAMMO, I'm preggo. We've been sorta trying (grin). I haven't confirmed with my doctor yet. That is my next step. But I went ahead and joind this list because quite frankly when I put in 'ossg' and 'pregnancy' in the search, I didn't expect to find anything. The number of OSSG lists has quadruples since I first started looking (and joined ) ossg lists a year ago. I had my surgery in Melbourne, FL with Dr. Tenewitz over a year ago. Because of the distance and right now I cannot drive (long story ending in a rt leg bk amputation) right now, I havent consulted him. I was hoping to gain some insite on what to look forward to as an wls person being preggo. My name is . I am 32yrs old and this will be my first child ever. woohoo. Quote Link to comment Share on other sites More sharing options...
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