Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 , This site has a good explanation of FM. I wrote you an email, but when I went to get this site's address, the email dissappeared. Sorry. FM has to do with the amount of substance P in the brain, which tells us how much pain we are feeling. That is why some ADs work. They calm the nerve endings of our pain receptors as well as calming the nerves that make us cranky. Plus, the normal body, if you can imagine this, works at 30mph. The FM body works at 80mph, which accounts for the exhaustion and sleep problems. Hope this sight comes out alright. Suzanne http://www.tidalweb.com/fms/fms.shtml __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Hi, I would like to welcome you to the group. I'm sorry to hear your diagnose of Fibromyalgia, were all here for reaching out, and helping others to deal with illness. I hope that you enjoy, this is an amazing group, hugs Tawny > Hello, I am newly diagnosed with Fibromyalgia. Wow it took a long > time to get it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Welcome to the group! Sorry you had get fibromyalgia in order to come to this group of warm, friendly people but you will find support and friendship here. Please tell us all about yourself, and how we can help you! I'm a grandmother to a 4-year old boy and 1-year old triplets, and I have Dercum's disease, a very rare disease. Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Welcome. I am 47 and have RA, three teenagers and a 21 year old. Three of my children have various challenges. Becky [ ] Re: FM Welcome to the group! Sorry you had get fibromyalgia in order to come to this group of warm, friendly people but you will find support and friendship here. Please tell us all about yourself, and how we can help you! I'm a grandmother to a 4-year old boy and 1-year old triplets, and I have Dercum's disease, a very rare disease. Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Welcome to the group! Sorry it took so long for you to get your fibromyalgia diagnosis. Hope to hear more from you soon. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] FM > Hello, I am newly diagnosed with Fibromyalgia. Wow it took a long > time to get it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Buslady: Welcome to the group. I am sorry to hear all you are going through. It is not uncommon for FMS to follow an injury or co-exist in a chronic pain patient....here is a link on post tramatic FMS... http://www.myfibrosite.com/users/fibroinsiteeducationalstudiesandsupp ort/PostTraumaticFibromyalgia.html.....here is another interesting site on the criteria for diagnosing FMS....http://www.masmith.inspired.net.au/docs/cfs_fms.htm Have they x-rayed of MRI'd your lower back, or any of the other area's you mentioned? There are numerous studies on chronic pain causing depression they seem to go hand in hand.....if you are not comfortable with the FMS diagnosis it is your right to seek a second and even third opinion. I know the feeling of gun shy about the drugs, but sometimes they have to try different combos until they find what works for you. As far as becoming addicted to hydrocodone, if you are suffering from chronic pain and there is something that allows you to function and have some quality of life then I would'nt call it addiction, dependent maybe but addicted not....is a diabetic addicted because he/she has to take insulin everyday? I hope you get some answers soon. And don't be shy about seeking a second opinion, especially if you are not comforatable with the diagnosis.....I look forward to hearing more from and about you......Kathi in OK --- In , " bus982000 " <bus982000@y...> wrote: > After two long yrs of compensation court and seeing the doctors, I > have been diagnosed with FM. I have work related injuries and am > receiving some comp. I had surgery on my right arm last Oct. and that > is getting somewhat better. Then I developed tennis elbow in left > arm from overcompensating while right arm heals. > I also have S.I. joint pain and spasms. > And major right shoulder pain. I wake up alot during the night with > pain in both hip areas and shoulders. > Finally my Orth Doc. says I think you should see an Reumy. > He says I have FM. > I swear I didn't have it until I got hurt at work. > I drove a school bus for 24 yrs.a and it is a laborers job. > I am of small frame and it really took alot of work for me to do it. > Then in the yr. 2001 I got a brand new bus with a malfuntioning > entrance door. I had to tug and pull with both hands to open the > broken door. The mechancis tried to fix it and couldn't. This went > on for a whole school yr., until I couldn't use my right arm and > developed pain in my lower back. > My Orth. Dr. won't sigh off for me to go back to the bus runs. > He says it would only aggrivate my injuries. > I also have IBS and Anxiety disorder which has peaked since my > injuries. > I have filed for SSD and was denied first time with an appeal inplace > it has been almost a year and no court date set yet. > I am so fustrated > I am in pain everyday, and now seeing a therapist for anxiety and > depression. > I just wonder did I always have FM or did the bus injuries cause it? > It is difficult to really know since I have always had IBS and some > anxiety. > I have tired many many drugs and still pain won't go away. > I get so tired from pain and not sleeping I used to be a great > sleeper until I got hurt. > And the pain exhausts me. I take all my energy away. > Some days are better and then some days are horrible. > I have taken, Zanax, hydrocodone, ibuprofine, flexeril, paxil CR, > naprison, and now I am on nortriptaline. > Now my doctor gave me ultracet to replace the hydrocodone because it > is addicting, although it does give me relief. I have not taken the > ultracet yet. > I am getting gun shy of trying anymore drugs. > I am not totally confinced I have FM but that is what my Reumy tells > me and my Primary doc. > Actually the Remy said it is questionable. but my Primary Dr. says he > is convinced I have it. > Any suggestions would be appreciated. > > Bus Lady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Sorry Buslady I got sloppy with the URL's....here they are corrected...Kathi in OK http://www.masmith.inspired.net.au/docs/cfs_fms.htm http://www.myfibrosite.com/users/fibroinsiteeducationalstudiesandsupp ort/PostTraumaticFibromyalgia.html > > After two long yrs of compensation court and seeing the doctors, I > > have been diagnosed with FM. I have work related injuries and am > > receiving some comp. I had surgery on my right arm last Oct. and > that > > is getting somewhat better. Then I developed tennis elbow in left > > arm from overcompensating while right arm heals. > > I also have S.I. joint pain and spasms. > > And major right shoulder pain. I wake up alot during the night > with > > pain in both hip areas and shoulders. > > Finally my Orth Doc. says I think you should see an Reumy. > > He says I have FM. > > I swear I didn't have it until I got hurt at work. > > I drove a school bus for 24 yrs.a and it is a laborers job. > > I am of small frame and it really took alot of work for me to do > it. > > Then in the yr. 2001 I got a brand new bus with a malfuntioning > > entrance door. I had to tug and pull with both hands to open the > > broken door. The mechancis tried to fix it and couldn't. This > went > > on for a whole school yr., until I couldn't use my right arm and > > developed pain in my lower back. > > My Orth. Dr. won't sigh off for me to go back to the bus runs. > > He says it would only aggrivate my injuries. > > I also have IBS and Anxiety disorder which has peaked since my > > injuries. > > I have filed for SSD and was denied first time with an appeal > inplace > > it has been almost a year and no court date set yet. > > I am so fustrated > > I am in pain everyday, and now seeing a therapist for anxiety and > > depression. > > I just wonder did I always have FM or did the bus injuries cause > it? > > It is difficult to really know since I have always had IBS and > some > > anxiety. > > I have tired many many drugs and still pain won't go away. > > I get so tired from pain and not sleeping I used to be a great > > sleeper until I got hurt. > > And the pain exhausts me. I take all my energy away. > > Some days are better and then some days are horrible. > > I have taken, Zanax, hydrocodone, ibuprofine, flexeril, paxil CR, > > naprison, and now I am on nortriptaline. > > Now my doctor gave me ultracet to replace the hydrocodone because > it > > is addicting, although it does give me relief. I have not taken > the > > ultracet yet. > > I am getting gun shy of trying anymore drugs. > > I am not totally confinced I have FM but that is what my Reumy > tells > > me and my Primary doc. > > Actually the Remy said it is questionable. but my Primary Dr. says > he > > is convinced I have it. > > Any suggestions would be appreciated. > > > > Bus Lady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 , I think Kathi's suggestion for a second or third opinion is a good one. I also agree that for chronic pain patients, addiction to opioids is uncommon. What about seeing a pain management team? I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] FM > After two long yrs of compensation court and seeing the doctors, I > have been diagnosed with FM. I have work related injuries and am > receiving some comp. I had surgery on my right arm last Oct. and that > is getting somewhat better. Then I developed tennis elbow in left > arm from overcompensating while right arm heals. > I also have S.I. joint pain and spasms. > And major right shoulder pain. I wake up alot during the night with > pain in both hip areas and shoulders. > Finally my Orth Doc. says I think you should see an Reumy. > He says I have FM. > I swear I didn't have it until I got hurt at work. > I drove a school bus for 24 yrs.a and it is a laborers job. > I am of small frame and it really took alot of work for me to do it. > Then in the yr. 2001 I got a brand new bus with a malfuntioning > entrance door. I had to tug and pull with both hands to open the > broken door. The mechancis tried to fix it and couldn't. This went > on for a whole school yr., until I couldn't use my right arm and > developed pain in my lower back. > My Orth. Dr. won't sigh off for me to go back to the bus runs. > He says it would only aggrivate my injuries. > I also have IBS and Anxiety disorder which has peaked since my > injuries. > I have filed for SSD and was denied first time with an appeal inplace > it has been almost a year and no court date set yet. > I am so fustrated > I am in pain everyday, and now seeing a therapist for anxiety and > depression. > I just wonder did I always have FM or did the bus injuries cause it? > It is difficult to really know since I have always had IBS and some > anxiety. > I have tired many many drugs and still pain won't go away. > I get so tired from pain and not sleeping I used to be a great > sleeper until I got hurt. > And the pain exhausts me. I take all my energy away. > Some days are better and then some days are horrible. > I have taken, Zanax, hydrocodone, ibuprofine, flexeril, paxil CR, > naprison, and now I am on nortriptaline. > Now my doctor gave me ultracet to replace the hydrocodone because it > is addicting, although it does give me relief. I have not taken the > ultracet yet. > I am getting gun shy of trying anymore drugs. > I am not totally confinced I have FM but that is what my Reumy tells > me and my Primary doc. > Actually the Remy said it is questionable. but my Primary Dr. says he > is convinced I have it. > Any suggestions would be appreciated. > > Bus Lady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 My fibro pain was always the same. I don’t know if this is common or not. My neck and shoulders were always very tight with lots of trigger point pain and the rest of me was fluish feeling. Kenda so today i woke up and i have pain somewhere else? the pain isnt always in the same spot? it comes and goes from different areas. it could be my legs one day and the next my back. does that still sound like fibromyalgia? sometimes i wont even have any pain. i thought fm was pain every day. some days nothing, other days i have alot of pain. liz Opinions expressed are NOT meant to take the place of advice given by licensed health care professionals. Consult your physician or licensed health care professional before commencing any medical treatment. " Do not let either the medical authorities or the politicians mislead you. Find out what the facts are, and make your own decisions about how to live a happy life and how to work for a better world. " - Linus ing, two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Liz, That sounds just like me, we both had the implants a short time & I think we are dealing with the same issues, again I really doubt you have FM, I just think your body is healing etc. & going thru whatever it is our bodies have to go thru to get back to normal, my days are getting better & better but at first after explant I had days were I felt like I was run over by a truck, some days I was achey, but it always goes away & never returns, it always varied everyday & it was a different pain or whatever. Hang in there & continue detoxing etc its going to take some time, your body is going thru alot right now. Jen In , " Liz " <elizabethhogg@s...> wrote: > > so today i woke up and i have pain somewhere else? the pain isnt > always in the same spot? it comes and goes from different areas. it > could be my legs one day and the next my back. does that still sound > like fibromyalgia? sometimes i wont even have any pain. i thought fm > was pain every day. some days nothing, other days i have alot of pain. > > > liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 It’s amazing to me how short of a time some of you had your implants and reacted so badly. That ought to say something to these docs. Kenda Liz, That sounds just like me, we both had the implants a short time & I think we are dealing with the same issues, again I really doubt you have FM, I just think your body is healing etc. & going thru whatever it is our bodies have to go thru to get back to normal, my days are getting better & better but at first after explant I had days were I felt like I was run over by a truck, some days I was achey, but it always goes away & never returns, it always varied everyday & it was a different pain or whatever. Hang in there & continue detoxing etc its going to take some time, your body is going thru alot right now. Jen In , " Liz " <elizabethhogg@s...> wrote: > > so today i woke up and i have pain somewhere else? the pain isnt > always in the same spot? it comes and goes from different areas. it > could be my legs one day and the next my back. does that still sound > like fibromyalgia? sometimes i wont even have any pain. i thought fm > was pain every day. some days nothing, other days i have alot of pain. > > > liz Opinions expressed are NOT meant to take the place of advice given by licensed health care professionals. Consult your physician or licensed health care professional before commencing any medical treatment. " Do not let either the medical authorities or the politicians mislead you. Find out what the facts are, and make your own decisions about how to live a happy life and how to work for a better world. " - Linus ing, two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Liz, Is the pain related to anything you do? . . . like extra walking or lifting? . . . Are you sleeping well? FM goes hand in glove with a sleep disorder. FM is dx'd by pressing on 18 trigger points (where muscles attach to bones) . . . 11 of the 18 have to be tender for the dx. You should be able to find a chart on the internet. Regardless, I would suggest doing gentle exercise . . .. like yoga movements, but without stressing yourself. Casual walking, dance-like movements. Be sure to drink lots of water. Your body is still flushing gunk from your implants . . . try to get it all out before it has time to do it's mischief! Rest when you body asks for it . . . and don't overdo it when you feel really good! Healing takes time! Look on it as an investment in a healthy tomorrow! Hugs, Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 hi liz I have been gone for a week in washington dc, so I am sure you got lots of replies on this already! I am answering these as I read them. Yes, fms is definitely a condition where one day you can feel fine and the next day not. Or even in the same day. One day youcan walk for miles, the next it seems to hurt to walk a short ways. The pain moves around. Some days it can be your back, then later a different spot. It --at least mine is--entirely sporadic. Some people who are diagnosed with fms get steadily worse over the years, but mine has come and gone in no particular fashion. I think it is really important to stretch daily, exercise to your tolerance (not overdo) and detoxify. Hugs kathy > > so today i woke up and i have pain somewhere else? the pain isnt > always in the same spot? it comes and goes from different areas. it > could be my legs one day and the next my back. does that still sound > like fibromyalgia? sometimes i wont even have any pain. i thought fm > was pain every day. some days nothing, other days i have alot of pain. > > > liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Hello, I do not use any devices either due to being implanted with Advanced Bionics 90K. I was on the HiRes program using my 16 electrodes in each ear for 4 months. I have been on the older program, CIS for 1 month using only 8 of my electrodes in each ear. I have no problem hearing anyone in the auto, hearing the radio or road noise using either program. I have no problem with the volume of the radio - I can turn it up or down to adjust the volume. I can not understand everything that I hear on the radio but I am hearing more and more very clearly. I know of reports where people say they can not adjust the volume of the radio they have to adjust their CI volume. That is not so with me. I also have no problem with hearing sirens or horn honking in the auto and I can hear the direction they come from. Just thought I would let you know. Roxie simultaneous bilateral 90K 8/10/2005 activated 8/30/2005 > > chances are you will not have to use an fm system in the car. I have been implanted for 4 years now and never had to use any assistive devices..... especially in a car. > Happy Hearing! > Carol > Boca Raton, FL > N24C left ear -12/11/01 > N Freedom- right ear- implanted 3/01/06 > Re: & which ear > > > , > > I have decided to have my left ear implanted bc that is the ear that has been > my " hearing " ear since I was born. My right ear has not heard anything since I > was 6 yrs old. > > Yes, I do drive a lot but am also a passenger when my family goes somewhere > as my husband thinks he is the better driver <smile>. I had tried a mike kind > of thing bf when my daughter was younger but she was too young for the mike. I > will definitely use something to make hearing easier once I get the CI. I > learned to lipread the passenger and drive safely. I've never had an accident > though I have had close calls. I make sure I stay way, way back from the car > ahead of me. And I lipread my daughter using a smaller mirror attached to my > rearview mirror. This is also how those that rely on sign language communicate > in the car. I know it isn't the safest thing to do but it works and so far, I've > done it safely. I always tell passengers and my family when I can't lipread due > to traffic or needing to watch where I turn or such. So that also makes it > " safer. " > > I would turn off my hearing aid when I wanted to roll down the window. > > in SC > > > > Quote Link to comment Share on other sites More sharing options...
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