Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Sue - Your pain sounds truly intolerable...unendurable! Most of us here have endured different degrees of pain, ourselves. I know what agonizing pain feels like. It's nearly impossible to focus on anything but the pain at those times. We all love you, and support you. Not just empty words, though. Because right now I feel so frustrated when I know you're in this much pain. I know you're trying different ways to ease it. Can you tell us where the pain is and what it feels like. eg. throbbing, drawing, pulsing, burning etc. And does it ease up or go away at different times? Hope you're feeling a little better at this moment. Love & Hugs - Carlene. In HeidiLiane , Urbanczyk <featherednst@...> wrote: > > > > OK, here is the skoop for me. Nothing,nothing I try. All the suggestions here, that I read over and over. Acupunture,massage,rubs,pain killers {have not tried narcotics......yet}, exercise {which you all know I faithfully do},heat,cool,baths...oh I could but won't go on helps this pain. I am in excrutiating pain tonight. If someone says " boo " to me I am going to cry. I feel like I am swimming in it or rather drowning it it. Nothing touches it. All the above things help in the moment with the regular horrible pain, getting me through the day {along with my DBT skills} but this, this is unbearable. I am losing hope that there is no solution to the pain. Only bandaides on huge gaping wounds. > > Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Pam - I'm really sorry for you, too, that you're in sooo much pain. Just wish there was something I could do to help ease it. We share so much of ourselves, here, and sometimes it's hard to think about the suffering that others are going through. Keep up your hope. There's so much research going on. It's just a matter of time until there's better treatments for these conditions. Hope the pain eases soon. Love & Hugs, Carlene. > > Sue, I am so sorry you're feeling so bad! I was not on here yesterday because of the same reason & feel awful today! When will it end! Do you live near or in Pa?,if you don't mind me asking? Our weather has been in the 50's one day and literally in the 30's the next day!! It's CRAZY!!! And I know that is why I am in SOOOO MUCH PAIN!!!! And you're right, NOTHING helps when you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Hi Rich, A 7 day hospital stay you say? Sounds pretty quick to me. Don't get your mind set too much on leaving hospital so soon. I got " back on earth " on day 7... I left hospital 10 days post surgery and that is about the quickest that could happen, according to my hospital. I have to say though, that I know in Europe one is admitted in hospital longer than in the US. About the pain, well, when I was " back on earth " I was to take pain killers, since the epidural had been taken out. I noticed that I had to take them, but I never experienced any pain. So on day 9 I was completely off any pain medication! But everyone is different, this is just my own experience. Over here (The Netherlands) if you still need pain killers, the hospital prescribes you the ones that are best suitable for your situation. I expect that to work the same in the US. I guess you must be getting pretty nervous right now... I thought back today, I think back a lot lately since it's almost a year ago now, and I remember the fears I had. I remember thinking how incredible it was, the fact that I would be so sick in a few days and knowing that upfront but not knowing exactly what to expect and what to be prepared for. The not knowing how it would be made it pretty hard on me. It's hard, I know, but in about one to two weeks you will be able to look back at these fears and be happy to have it all behind you. You will be in my thoughts coming Tuesday and I'll be checking the board for news about you, though I know you will do marvellous!!! Love, Isabella ________________________________ From: " rbailhe@... " <rbailhe@...> achalasia Sent: Sunday, March 22, 2009 5:36:11 PM Subject: Pain I've gotten a lot of great advice about managing pain coming out of surgery. A question popped into my mind. I'm supposed to have a 7 day hospital stay. Once you leave the hospital and you are no longer hooked into an IV with morphine etc., how do you mangage pain? Has the pain dulled enough by that time so you don't need the powerful drugs? What's the best oral pain killers to take? Vicodin is one that comes to my mine because Dr.House on the tv series " House " is always popping them into his mouth. I hope everyone is having a nice weekend. Thanks, Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Rich, I had an esophagectomy last February 25 2008. The doctor prescribed oxycodone for me to bring home. I found that I no longer needed it within about three weeks. I was in the hospital; however, almost 8 weeks and of course received, and IV drip of an opiate and for the first five days, I received pain meds through my epicural. The doctor put the epidural in before my surgery. My pain was managed very well.. I got an infection and had to stay longer and went to rehab twice. I didn't even have to come home with the J-Tube, which was great. I wish you the best. In VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 , Thanks for that info and for the well wishes. Sorry you got that infection. I'm sure that was not fun. Take care, Rich > > > Rich, > > I had an esophagectomy last February 25 2008. The doctor prescribed > oxycodone for me to bring home. I found that I no longer needed it within > about three weeks. I was in the hospital; however, almost 8 weeks and of > course received, and IV drip of an opiate and for the first five days, I > received pain meds through my epicural. The doctor put the epidural in > before my surgery. My pain was managed very well.. I got an infection and > had to stay longer and went to rehab twice. I didn't even have to come home > with the J-Tube, which was great. I wish you the best. > > In VA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Hi Rich I was in hospital for 11 days post ectomy (which is normal for the UK) and was discharged with some Paracetamol to take regularly. Eventually I stopped taking them for the pain. Thinking of you on your coming surgery. Good Luck. ________________________________ From: Isabella Arnold <arnoldisabella@...> achalasia Sent: Sunday, March 22, 2009 6:34:46 PM Subject: Re: Pain Hi Rich, A 7 day hospital stay you say? Sounds pretty quick to me. Don't get your mind set too much on leaving hospital so soon. I got " back on earth " on day 7... I left hospital 10 days post surgery and that is about the quickest that could happen, according to my hospital. I have to say though, that I know in Europe one is admitted in hospital longer than in the US. About the pain, well, when I was " back on earth " I was to take pain killers, since the epidural had been taken out. I noticed that I had to take them, but I never experienced any pain. So on day 9 I was completely off any pain medication! But everyone is different, this is just my own experience. Over here (The Netherlands) if you still need pain killers, the hospital prescribes you the ones that are best suitable for your situation. I expect that to work the same in the US. I guess you must be getting pretty nervous right now... I thought back today, I think back a lot lately since it's almost a year ago now, and I remember the fears I had. I remember thinking how incredible it was, the fact that I would be so sick in a few days and knowing that upfront but not knowing exactly what to expect and what to be prepared for. The not knowing how it would be made it pretty hard on me. It's hard, I know, but in about one to two weeks you will be able to look back at these fears and be happy to have it all behind you. You will be in my thoughts coming Tuesday and I'll be checking the board for news about you, though I know you will do marvellous!! ! Love, Isabella ____________ _________ _________ __ From: " rbailhemea (DOT) org " <rbailhemea (DOT) org> achalasia@grou ps.com Sent: Sunday, March 22, 2009 5:36:11 PM Subject: Pain I've gotten a lot of great advice about managing pain coming out of surgery. A question popped into my mind. I'm supposed to have a 7 day hospital stay. Once you leave the hospital and you are no longer hooked into an IV with morphine etc., how do you mangage pain? Has the pain dulled enough by that time so you don't need the powerful drugs? What's the best oral pain killers to take? Vicodin is one that comes to my mine because Dr.House on the tv series " House " is always popping them into his mouth. I hope everyone is having a nice weekend. Thanks, Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Rich, You will do fine. I will keep you in my prayers. In VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 What is LDN? Anne W Pain I am in severe pain withdrawing from Tramadol in order to take LDN. I have 1 1/2 weeks to go. My doctor has given me a new protocol to follow, mainly natural stuff which doesnt help much and zanaflex to take at nite and at daytime. really drugs me in the daytime, so I cut it in two, but it isn't very much help, although i can take the other half later and get a little longer relief. I am wondering if the tramadol is still in my system, off it 2 weeks now, and that may be the reason for the pain. I am resolved to hang in there - this is my second attempt because Tramadol is the only thing that has ever helped my daytime pain. anybody done this? Also, does the LDN help with pain for you? fibrofan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2009 Report Share Posted April 13, 2009 Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ________________________________ From: " hlineburger2@... " <hlineburger2@...> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 > > Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! >hi,im diana,18yrs.im having scoliosis too,it starts when i was 14 but i only got diagnosed when i was 17.i do get severe pain most of the time and painkillers are no help to me..i feel tired,cant breathe easy and it drive me nuts..having a 's' spine isnt easy.the only thing i do is;try to relax,breath,do some strecthing exercise..i suggest you try it too.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 There are a few medications for acid reflux that you may want to consider. I JUST started one that starts like pana... The doctor told me it could take up to two weeks to begin to work. I have had post-nasal drip and went to an ENT. She was the one who told me that postnasal drip is often caused by PND. It floored me to hear that. I have COPD and I thought it was related to a sinus infection or a bad cold! As for the fatigue, well, I forgot to write in a post earlier that CMT also causes serious fatigue, just as pain can. You can ask your scoli surgeon to refer you to a pain management clinic. Many people with chronic pain from different sources swear by these clinics. Your surgeon may feel a pain medication for the severe pain would be advised, and take extra-strength tylenol or advil for the rest. For my pain, I switch off ES tylenol and advil all the time. At night, I take Tylenol PM or Advil PM. It all depends on what I have on hand, I'll buy them on sale. On my REAL bad pain days, I take pecocet, and the last one I took was last week, and the time before that was Dec. It's wise to take THAT stuff sparingly! lj From: hlineburger2@... <hlineburger2@...> Subject: pain Scoliosis Treatment Date: Monday, April 13, 2009, 6:07 PM Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2009 Report Share Posted April 19, 2009 So you have to sleep a lot too? Have you had surgery and/or on medications? I was doing pretty good until my rods broke and I had to have a 3rd and 4th surgery. That was over a year ago and I still am so tired! I sleep about 12 hours a night, but then don't have much energy when I'm awake. I'm healthy other than the scoliosis, and since my surgery that's not even very severe. I don't know if it's all because of the pain meds I take or if I've just had too many surgeries. I'm 51 and my 82 year old mother is about at the same level as I am, energy wise. ________________________________ From: vicci walford <vicciwalford@...> Scoliosis Treatment Sent: Monday, April 13, 2009 7:42:11 PM Subject: Re: pain Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ____________ _________ _________ __ From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2009 Report Share Posted April 20, 2009 Does anyone that has not had surgery have severe fatigue? I am 53, severe S curve and no surgeries (yet). I sleep all night and fall asleep during the day. Can't get out of my own way I am sooo tired. Dr. ran blood tests and everyting else seems fine. From: Randie Meyer <taknitlite@...> Subject: Re: pain Scoliosis Treatment Date: Sunday, April 19, 2009, 9:27 PM So you have to sleep a lot too? Have you had surgery and/or on medications? I was doing pretty good until my rods broke and I had to have a 3rd and 4th surgery. That was over a year ago and I still am so tired! I sleep about 12 hours a night, but then don't have much energy when I'm awake. I'm healthy other than the scoliosis, and since my surgery that's not even very severe. I don't know if it's all because of the pain meds I take or if I've just had too many surgeries. I'm 51 and my 82 year old mother is about at the same level as I am, energy wise. ____________ _________ _________ __ From: vicci walford <vicciwalford> Scoliosis Treatment Sent: Monday, April 13, 2009 7:42:11 PM Subject: Re: pain Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ____________ _________ _________ __ From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 I suspect that many of us with scoliosis.....(with or without surgery) experience more fatigue than other people. Pain medications often cause fatigue.....and if you aren't on pain medications, but are having pain.....pain also causes fatigue. Although it is hard to do when you are tired.....exercise is the best remedy I know of to create energy. My naturapath also recommended increasing protein (I use a powder supplement in smoothies), taking a good vitamin D supplement and I also give myself weekly injections of vitamin B and magnesium. The vit. B is good for energy and the mag. helps with muscle spasms. If anyone else has ideas about reducing fatigue and increasing energy, please share what works for you. Melody Scoliosis Treatment From: mollymol6@... Date: Mon, 20 Apr 2009 16:29:38 -0700 Subject: Re: pain Does anyone that has not had surgery have severe fatigue? I am 53, severe S curve and no surgeries (yet). I sleep all night and fall asleep during the day. Can't get out of my own way I am sooo tired. Dr. ran blood tests and everyting else seems fine. From: Randie Meyer <taknitlite@...> Subject: Re: pain Scoliosis Treatment Date: Sunday, April 19, 2009, 9:27 PM So you have to sleep a lot too? Have you had surgery and/or on medications? I was doing pretty good until my rods broke and I had to have a 3rd and 4th surgery. That was over a year ago and I still am so tired! I sleep about 12 hours a night, but then don't have much energy when I'm awake. I'm healthy other than the scoliosis, and since my surgery that's not even very severe. I don't know if it's all because of the pain meds I take or if I've just had too many surgeries. I'm 51 and my 82 year old mother is about at the same level as I am, energy wise. ____________ _________ _________ __ From: vicci walford <vicciwalford> Scoliosis Treatment Sent: Monday, April 13, 2009 7:42:11 PM Subject: Re: pain Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ____________ _________ _________ __ From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Yeah-I havent had surgery yet and Im exhausted all of the time,sometimes sleeping up to 18hours+ a day,its awful.Ive had blood tests and they were fine.I thought it was the meds Im on but even when I dont take them,Im the same. Today Ive managed to stay awake for 6hours solid which is good for me-Im not quite 30 but I see 70 year olds with more energy!! I managed to go to town and do some light shopping but then my sciatica started again and now I feel like someone is stabbing me in the buttocks (I have intraspinal cysts aswell)so Im off to get my TENS machine on and swallow some more painkillers!! ________________________________ From: Sara Dolan <mollymol6@...> Scoliosis Treatment Sent: Tuesday, April 21, 2009 12:29:38 AM Subject: Re: pain Does anyone that has not had surgery have severe fatigue? I am 53, severe S curve and no surgeries (yet). I sleep all night and fall asleep during the day. Can't get out of my own way I am sooo tired. Dr. ran blood tests and everyting else seems fine. From: Randie Meyer <taknitlite (DOT) com> Subject: Re: pain Scoliosis Treatment Date: Sunday, April 19, 2009, 9:27 PM So you have to sleep a lot too? Have you had surgery and/or on medications? I was doing pretty good until my rods broke and I had to have a 3rd and 4th surgery. That was over a year ago and I still am so tired! I sleep about 12 hours a night, but then don't have much energy when I'm awake. I'm healthy other than the scoliosis, and since my surgery that's not even very severe. I don't know if it's all because of the pain meds I take or if I've just had too many surgeries. I'm 51 and my 82 year old mother is about at the same level as I am, energy wise. ____________ _________ _________ __ From: vicci walford <vicciwalford> Scoliosis Treatment Sent: Monday, April 13, 2009 7:42:11 PM Subject: Re: pain Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ____________ _________ _________ __ From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Hi, Sara, Pain can really tire a person out! And, even cause high blood pressure if it's severe over a long period of time. The worse my curvatures got, movement became more difficult, and, the pain woke me up all night long, from full-blown to the slightest awakenings. That may be a reason for having to stay in bed longer than normal. Another reason is sleep apnea or other sleep disturbances. A physical exam that shows nothing wrong sometimes needs to go a little further into sleep disorders. There are many of them. Pain is only one reason a person can't get to sleep, stay asleep and not wake too early and not get BACK to sleep. Anyway, just some thoughts. Keep in mind that a person with severe spine curves and pain takes longer to do the same task and takes longer to move the same distance (say, across the house) than a normal person, so you will tire more easily then that 'normal' person. lj From: Randie Meyer <taknitlite (DOT) com> Subject: Re: pain Scoliosis Treatment Date: Sunday, April 19, 2009, 9:27 PM So you have to sleep a lot too? Have you had surgery and/or on medications? I was doing pretty good until my rods broke and I had to have a 3rd and 4th surgery. That was over a year ago and I still am so tired! I sleep about 12 hours a night, but then don't have much energy when I'm awake. I'm healthy other than the scoliosis, and since my surgery that's not even very severe. I don't know if it's all because of the pain meds I take or if I've just had too many surgeries. I'm 51 and my 82 year old mother is about at the same level as I am, energy wise. ____________ _________ _________ __ From: vicci walford <vicciwalford> Scoliosis Treatment Sent: Monday, April 13, 2009 7:42:11 PM Subject: Re: pain Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ____________ _________ _________ __ From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Hi Sara, Randie, , Vicci, and others..... I have not had any surgery, am 70 and seldom post, but with all the comments regarding severe fatigue and scoliosis I wanted to share my trip down that road. I had debilitating fatigue that got worse over 15 years or so. An ER visit and 3 weeks in hospital, where I was called a CO2 retainer, started me digging for information to find out what was going on. A blood test call Arterial Blood Gas (ABG) showed very high carbon dioxide (CO2) levels and very low oxygen (O2). My double scoliosis is severe enough (66/77) to restrict my lungs from expanding the way they need to (known as restrictive breathing), and I learned I had mixed sleep apnea. Due to information I had read over the years, I knew and insisted on a bilevel positive pressure ventilitator (not a C-PAP) and it has resolved the fatigue... once I got the machine settings right. Supplemental oxygen is NOT the answer for hypoventilation. See if you can find a neurologist that has experience treating conditions such as muscular dystrophy, ALS, or multiple sclerosis. I know everyone is unique in their own way, but if this can help start anyone on the road to resolving their fatigue.... that would be great!!! My scoliosis and muscles (post-polio) didn't get better, but I *feel* normal again. I wake rested and go to bed with my old normal sense of tireness... the horried 24/7 fatigue is gone!!! Barb Posted by: " Sara Dolan " _mollymol6@... _ (mailto:mollymol6@...?Subject= Re:%20pain) _mollymol6 _ (mollymol6) Tue Apr 21, 2009 6:20 am (PDT) Does anyone that has not had surgery have severe fatigue? I am 53, severe S curve and no surgeries (yet). I sleep all night and fall asleep during the day. Can't get out of my own way I am sooo tired. Dr. ran blood tests and everyting else seems fine. From: Randie Meyer <_taknitlite@..._ (mailto:taknitlite@...) > Subject: Re: pain _Scoliosis Treatment@Scoliosis-MeSco_ (mailto:Scoliosis Treatment ) Date: Sunday, April 19, 2009, 9:27 PM So you have to sleep a lot too? Have you had surgery and/or on medications? I was doing pretty good until my rods broke and I had to have a 3rd and 4th surgery. That was over a year ago and I still am so tired! I sleep about 12 hours a night, but then don't have much energy when I'm awake. I'm healthy other than the scoliosis, and since my surgery that's not even very severe. I don't know if it's all because of the pain meds I take or if I've just had too many surgeries. I'm 51 and my 82 year old mother is about at the same level as I am, energy wise. ____________ _________ _________ __ From: vicci walford <vicciwalford> Scoliosis Treatment Sent: Monday, April 13, 2009 7:42:11 PM Subject: Re: pain Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ____________ _________ _________ __ From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! **************Big savings on Dell XPS Laptops and Desktops! (http://pr.atwola.com/promoclk/100126575x1219799634x1201361008/aol?redir=http:%2\ F%2Fad.doubl eclick.net%2Fclk%3B214133440%3B36002254%3Bj) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Thankyou for that,I shall print it out and take it to the docs etc with me the next time I go. ________________________________ From: " bclark38@... " <bclark38@...> Scoliosis Treatment Sent: Thursday, April 23, 2009 7:05:41 AM Subject: Re: pain Hi Sara, Randie, , Vicci, and others..... I have not had any surgery, am 70 and seldom post, but with all the comments regarding severe fatigue and scoliosis I wanted to share my trip down that road. I had debilitating fatigue that got worse over 15 years or so. An ER visit and 3 weeks in hospital, where I was called a CO2 retainer, started me digging for information to find out what was going on. A blood test call Arterial Blood Gas (ABG) showed very high carbon dioxide (CO2) levels and very low oxygen (O2). My double scoliosis is severe enough (66/77) to restrict my lungs from expanding the way they need to (known as restrictive breathing), and I learned I had mixed sleep apnea. Due to information I had read over the years, I knew and insisted on a bilevel positive pressure ventilitator (not a C-PAP) and it has resolved the fatigue... once I got the machine settings right. Supplemental oxygen is NOT the answer for hypoventilation. See if you can find a neurologist that has experience treating conditions such as muscular dystrophy, ALS, or multiple sclerosis. I know everyone is unique in their own way, but if this can help start anyone on the road to resolving their fatigue.... that would be great!!! My scoliosis and muscles (post-polio) didn't get better, but I *feel* normal again. I wake rested and go to bed with my old normal sense of tireness... the horried 24/7 fatigue is gone!!! Barb Posted by: " Sara Dolan " _mollymol6 (DOT) com _ (mailto:mollymol6 (DOT) com?Subject= Re:%20pain) _mollymol6 _ (http://profiles. / mollymol6) Tue Apr 21, 2009 6:20 am (PDT) Does anyone that has not had surgery have severe fatigue? I am 53, severe S curve and no surgeries (yet). I sleep all night and fall asleep during the day. Can't get out of my own way I am sooo tired. Dr. ran blood tests and everyting else seems fine. From: Randie Meyer <_taknitlite@ .tak_ (mailto:taknitlite (DOT) com) > Subject: Re: pain _Scoliosis Treatment@ Scoliosis- MeSco_ (mailto:Scoliosis Treatment) Date: Sunday, April 19, 2009, 9:27 PM So you have to sleep a lot too? Have you had surgery and/or on medications? I was doing pretty good until my rods broke and I had to have a 3rd and 4th surgery. That was over a year ago and I still am so tired! I sleep about 12 hours a night, but then don't have much energy when I'm awake. I'm healthy other than the scoliosis, and since my surgery that's not even very severe. I don't know if it's all because of the pain meds I take or if I've just had too many surgeries. I'm 51 and my 82 year old mother is about at the same level as I am, energy wise. ____________ _________ _________ __ From: vicci walford <vicciwalford> Scoliosis Treatment Sent: Monday, April 13, 2009 7:42:11 PM Subject: Re: pain Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ____________ _________ _________ __ From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! ************ **Big savings on Dell XPS Laptops and Desktops! (http://pr.atwola. com/promoclk/ 100126575x121979 9634x1201361008/ aol?redir= http:%2F% 2Fad.doubl eclick.net%2Fclk% 3B214133440% 3B36002254% 3Bj) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 Dear Melody, May I add something? Pain can also cause high blood pressure. Mine got up to 145/120 and had to go on PB medicine. As soon as the soon as the surgery was over, I mean, IMMEDIATELY, it was gone and never came back. lj From: Randie Meyer <taknitlite (DOT) com> Subject: Re: pain Scoliosis Treatment Date: Sunday, April 19, 2009, 9:27 PM So you have to sleep a lot too? Have you had surgery and/or on medications? I was doing pretty good until my rods broke and I had to have a 3rd and 4th surgery. That was over a year ago and I still am so tired! I sleep about 12 hours a night, but then don't have much energy when I'm awake. I'm healthy other than the scoliosis, and since my surgery that's not even very severe. I don't know if it's all because of the pain meds I take or if I've just had too many surgeries. I'm 51 and my 82 year old mother is about at the same level as I am, energy wise. ____________ _________ _________ __ From: vicci walford <vicciwalford> Scoliosis Treatment Sent: Monday, April 13, 2009 7:42:11 PM Subject: Re: pain Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ____________ _________ _________ __ From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Since my surgery, my curves aren't much anymore. I'm somewhere in the 20's on both curves, with my lumbar a bit more severe. I think I'm so tired partly from having so many surgeries in such a short period of time and also, I think it's just so hard to move now, it's tiring. Everything is such an effort when your spine and pelvis don't bend. I had horrible pain before, much less now, but I wasn't this tired before, even though I had all that pain. I spent most of my time trying to distract myself back then. Now, I just want to rest. ________________________________ From: vicci walford <vicciwalford@...> Scoliosis Treatment Sent: Thursday, April 23, 2009 1:18:44 PM Subject: Re: Re: pain Thankyou for that,I shall print it out and take it to the docs etc with me the next time I go. ____________ _________ _________ __ From: " bclark38aol (DOT) com " <bclark38aol (DOT) com> Scoliosis Treatment Sent: Thursday, April 23, 2009 7:05:41 AM Subject: Re: pain Hi Sara, Randie, , Vicci, and others..... I have not had any surgery, am 70 and seldom post, but with all the comments regarding severe fatigue and scoliosis I wanted to share my trip down that road. I had debilitating fatigue that got worse over 15 years or so. An ER visit and 3 weeks in hospital, where I was called a CO2 retainer, started me digging for information to find out what was going on. A blood test call Arterial Blood Gas (ABG) showed very high carbon dioxide (CO2) levels and very low oxygen (O2). My double scoliosis is severe enough (66/77) to restrict my lungs from expanding the way they need to (known as restrictive breathing), and I learned I had mixed sleep apnea. Due to information I had read over the years, I knew and insisted on a bilevel positive pressure ventilitator (not a C-PAP) and it has resolved the fatigue... once I got the machine settings right. Supplemental oxygen is NOT the answer for hypoventilation. See if you can find a neurologist that has experience treating conditions such as muscular dystrophy, ALS, or multiple sclerosis. I know everyone is unique in their own way, but if this can help start anyone on the road to resolving their fatigue.... that would be great!!! My scoliosis and muscles (post-polio) didn't get better, but I *feel* normal again. I wake rested and go to bed with my old normal sense of tireness... the horried 24/7 fatigue is gone!!! Barb Posted by: " Sara Dolan " _mollymol6 (DOT) com _ (mailto:mollymol6@ . com?Subject= Re:%20pain) _mollymol6 _ (http://profiles. / mollymol6) Tue Apr 21, 2009 6:20 am (PDT) Does anyone that has not had surgery have severe fatigue? I am 53, severe S curve and no surgeries (yet). I sleep all night and fall asleep during the day. Can't get out of my own way I am sooo tired. Dr. ran blood tests and everyting else seems fine. From: Randie Meyer <_taknitlite@ .tak_ (mailto:taknitlite@ . com) > Subject: Re: pain _Scoliosis Treatment@ Scoliosis- MeSco_ (mailto:Scoliosis- Medical) Date: Sunday, April 19, 2009, 9:27 PM So you have to sleep a lot too? Have you had surgery and/or on medications? I was doing pretty good until my rods broke and I had to have a 3rd and 4th surgery. That was over a year ago and I still am so tired! I sleep about 12 hours a night, but then don't have much energy when I'm awake. I'm healthy other than the scoliosis, and since my surgery that's not even very severe. I don't know if it's all because of the pain meds I take or if I've just had too many surgeries. I'm 51 and my 82 year old mother is about at the same level as I am, energy wise. ____________ _________ _________ __ From: vicci walford <vicciwalford> Scoliosis Treatment Sent: Monday, April 13, 2009 7:42:11 PM Subject: Re: pain Hi there , I too got diagnosed with scoli when I was a teen, it got worse after my boy was born 10 years ago. I know how you feel with the fatigue,Im constantly tired,sometimes sleeping up to 15 hours a day, I know 70 year olds who have more energy than me its a nightmare,I feel old before my time.Where are you from? some people on here will disagree with seeing a chiropractor as scoli is something only specialists should work on. I am currently on Amatriptyline which is actually an antidepressant but it does help,as well as Dihydrocodeine and Diclofenac, I also use my TENS machine and heat and cool packs,but everyone has different painkillers etc. There are loads of people on here so you are sure to get loads of advice hun. I wish you luck Vicci ____________ _________ _________ __ From: " hlineburger2@ ymail.com " <hlineburger2@ ymail.com> Scoliosis Treatment Sent: Monday, April 13, 2009 11:07:53 PM Subject: pain Hi..my name is and I have never been a part of any chat room before. The pain from my scoliosis, however, is so severe and unrelenting that I have to seek out others and ask how they are dealing with the pain. I am 34 and I've had scoliosis since I was a teenager. The degree of pain has waxed and waned over those many years but has been consistantly worse since the birth of my second child. My s-curve is about 45 degrees for each curve. I have acid reflux, shortness of breath and fatigue. I try to walk most days of at least twenty minutes and visit the chiropractor ever two to three weeks. I feel like the pain and fatigue is wearing me down and my quality of life is being compromised. Can anyone offer me any suggestions for help? Thanks! ************ **Big savings on Dell XPS Laptops and Desktops! (http://pr.atwola. com/promoclk/ 100126575x121979 9634x1201361008/ aol?redir= http:%2F% 2Fad.doubl eclick.net%2Fclk% 3B214133440% 3B36002254% 3Bj) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 I am not here to pass judgement on the whole MJ debate. I think it is quite a lively discussion and if it helps who am I to say anything. However I just want to point out that when in terrible pain due to Fibro and CFS as well as other issues you have to also look to your diet. So many things that we put in our mouths contribute considerably to our pain. ( It has been proven people with Diabetes can really help control their pain just by altering their diet.) When asked about my diet I often get the response that people do not think they could not do what I do. You can if it helps your pain. You can do anything to make the pain less. Since I take no pain meds I rely heavily on my diet. Everyone, whether on pain meds or not could benefit from a diet minus wheat,sugar and all chemicals. Sugar is poison, wheat is not even digestible and flares our immune systems. Something we so do not want. Sugar will actual cause pain as will wheat. Processed foods and chemicals add a strain on our already taxed bodies. This is not a disease you have to just endure. This is something you can make better. It does take time, research and discipline. However isn't the result worth it?Their is alot of info about this in our files. Clare is wonderful on this subject ( and many others ) and full of knowledge. I hope you all read her postings. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 Thanks Sue. I thoroughly believe you are correct as far as diet and all the chemicals we consume, but I don't think that's the whole story. My grandmother (most likely) had fibro, and there are others within the family who also have AI diseases. Back in my grandmother's era, she was poor but ate a diet without all the chemicals we presently eat. I do however believe once these chemicals are consumed, they change our DNA and RNA and get passed down through the generations. I believe we can make corrections to our diet today which may help. I also know that eating fresh whole foods costs alot more than in the grocery stores, which makes them cost prohibitive to most people, and it takes a whole lot of research to plan a wholesome food diet. Also, as you said, it takes a very long time to see the results, which can and often is cost prohibitive. I've gone to the Fibro and Fatigue Center under Dr. Teitelbaum. I went for four months and it cost a fortune since none of the treatment or doctor's cost is not accepted under Medicare. I've written letters to the President, congress, and state legislatures pleading for alternative treatments under Medicare, but of course nothing will happen since no one in the "system" needs to worry about these things since they have the best healthcare in the world available to them for free. So there are many aspects as to why the US is ranked I believe No. 59 in the world as far as healthcare is concerned. Cuba takes better care of their people than the US. So much for capitalism. JacquieDogs come when they are called; cats take a message and get back to you.- Bly From: Urbanczyk <featherednst@...>Subject: Re: Pain Date: Wednesday, August 12, 2009, 9:32 PM I am not here to pass judgement on the whole MJ debate. I think it is quite a lively discussion and if it helps who am I to say anything. However I just want to point out that when in terrible pain due to Fibro and CFS as well as other issues you have to also look to your diet. So many things that we put in our mouths contribute considerably to our pain. ( It has been proven people with Diabetes can really help control their pain just by altering their diet.) When asked about my diet I often get the response that people do not think they could not do what I do. You can if it helps your pain. You can do anything to make the pain less. Since I take no pain meds I rely heavily on my diet. Everyone, whether on pain meds or not could benefit from a diet minus wheat,sugar and all chemicals. Sugar is poison, wheat is not even digestible and flares our immune systems. Something we so do not want. Sugar will actual cause pain as will wheat. Processed foods and chemicals add a strain on our already taxed bodies. This is not a disease you have to just endure. This is something you can make better. It does take time, research and discipline. However isn't the result worth it?Their is alot of info about this in our files. Clare is wonderful on this subject ( and many others ) and full of knowledge. I hope you all read her postings. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2009 Report Share Posted August 14, 2009 I can not agree more with Sue and everyone else that has posted about diet. Once I changed my diet and learned which foods to combine (to control acid), I am 95% better. I would probably be 100% but I am going through a very stressful time. Take baby steps and start by changing one thing. Then go from there. I still take some supplements. I was on Lyrica for about six months a couple of years ago. I couldn’t stay awake at work. So that’s when I decided to go off Lyrica and start changing things on my own. I started by changing my diet. Once I was started feeling better, I started exercising again. Very slowly at first. I just started with five minutes and gradually added more. With diet and exercise change, I starting sleeping better which also helped. After a year and a half, I am still working on changes in my diet and exercise. But now how I eat and my exercise is just a normal part of my life and really don’t think about it. But Sue is right, it takes time, research and discipline but the results are worth it. Regards, from WI From: Urbanczyk <featherednst> Subject: Re: Pain Date: Wednesday, August 12, 2009, 9:32 PM I am not here to pass judgement on the whole MJ debate. I think it is quite a lively discussion and if it helps who am I to say anything. However I just want to point out that when in terrible pain due to Fibro and CFS as well as other issues you have to also look to your diet. So many things that we put in our mouths contribute considerably to our pain. ( It has been proven people with Diabetes can really help control their pain just by altering their diet.) When asked about my diet I often get the response that people do not think they could not do what I do. You can if it helps your pain. You can do anything to make the pain less. Since I take no pain meds I rely heavily on my diet. Everyone, whether on pain meds or not could benefit from a diet minus wheat,sugar and all chemicals. Sugar is poison, wheat is not even digestible and flares our immune systems. Something we so do not want. Sugar will actual cause pain as will wheat. Processed foods and chemicals add a strain on our already taxed bodies. This is not a disease you have to just endure. This is something you can make better. It does take time, research and discipline. However isn't the result worth it? Their is alot of info about this in our files. Clare is wonderful on this subject ( and many others ) and full of knowledge. I hope you all read her postings. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 , I am so sorry. Truly I am. I identify with the shortness of breath, the pounding of the heart, pain at a level that is beyond what you think you can take anymore, exhaustion that makes walking to the bathroom almost impossible. It is so awful. No one can really know how scary and terrible it is until they have lived it. I think the key is finding out what is going on with yourself beyond just the label of Fibro. I choose to finally seek out a Naturopathic doctor/Keneisiologist. Our "Modern" medicine was and is no help to me. It has been a great help to identify what has been going on in my body and work on it. So in times like now ( I am also going through what you describe, now) I know what it most probably is from. I don't know what your diet is but if you do eat wheat while you are in so much pain just stop any wheat. Inflammation is almost always present with pain and wheat causes inflammation and more pain. No MSG or artificial sweetners. All will make your pain worse. Make sure you drink enough so your body will not get dehydrated. We are often dehydrated without knowing it and that will make the being out of breath and heart pounding worse. Sugar can also cause joints to go out, causing more pain, until you can get an adjustment. Do you have a moist heat - heating pad? I cannot live without my heating pad and cold packs. It has to be moist heat though. I order mine online. They are the same pads that the massage therapists use. Expensive but I live on it and even take it when I travel. If you tell me what kind of articles you are looking for I will happily help you. I did not quite understand what you were asking. Sorry. Just let me know and I will supply. hugs, Sue Hi everybody today is a day of major pain. i hurt so much that i have shortness of breath, pounding heart, and such. It hurts so much and nothing that i am on is helping to calm it down. Last night i thought i was going to have to go to the hospital. I kind of still feel the same way where in the fibromyalgia is that recorded that we may these problems too? Just need to talk and maybe someone can direct me to what i can read. shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Oh , I am so sorry you are feeling so awful. I don't know it shortness of breath goes with the fibro desease? I have emphysema and am on o2 24/7. I do know Sue3 has been having the same things going on with her also. I will keep strong prayers going for you to feel better soon. Love & Hugs Cyn Boyd -- Pain Hi everybody today is a day of major pain. i hurt so much that i have shortness of breath, pounding heart, and such. It hurts so much and nothing that i am on is helping to calm it down. Last night i thought i was going to have to go to the hospital. I kind of still feel the same way where in the fibromyalgia is that recorded that we may these problems too? Just need to talk and maybe someone can direct me to what i can read. shelly "Open For Tummy Rub's"LRM-S Creations9-22-09Photographer Unknown Font - Times New RomanGraphic From Group SharesFor Non - Profit Use OnlyNo Copyright Infringement Intended Quote Link to comment Share on other sites More sharing options...
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