Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Welcome to the club, Kat. I know it's not fun but you are not alone.Take care, hun. Sharon finaly a diagnosess. whent to the rumatologest today.. got a diagnosess finaly. I have chronic Fatuige, and Fibro. I am in soo much pain now becouse of the poking and prodding. but he sugested doing yoga and other stuff. Im having a lot of truble getting the hubby to listen to the stuff that the dr told me to do, like not to do long walks and stuff, and to do mainly yoga and water arobics..... i dont think that he understands my illness quite yet, and it hurts. I mean there is nothing much i can do and im always in pain. The rummy also told me that i should go off my harsh pain pills, the t3's and im not sure if i want to... they realy help... if anyone who has these diagnosess could let me know what they do to help the symptoms that woudl be great. well im off to bed now.. thx for everythign! Kat Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Kat, Try to get hubby to go with you to doctor's appts. sometimes. That may help him understand. P. -- finaly a diagnosess. whent to the rumatologest today.. got a diagnosess finaly. I have chronic Fatuige, and Fibro. I am in soo much pain now becouse of the poking and prodding. but he sugested doing yoga and other stuff. Im having a lot of truble getting the hubby to listen to the stuff that the dr told me to do, like not to do long walks and stuff, and to do mainly yoga and water arobics..... i dont think that he understands my illness quite yet, and it hurts. I mean there is nothing much i can do and im always in pain. The rummy also told me that i should go off my harsh pain pills, the t3's and im not sure if i want to... they realy help... if anyone who has these diagnosess could let me know what they do to help the symptoms that woudl be great. well im off to bed now.. thx for everythign! Kat Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 The first thing I would suggest is to find a support group through one of the hospitals--maybe a training one like Denny and I attended at Mayo--and have your hubby go with you. It really helped to have Denny go through the class with me so he understood what exactly was going on with me. I haven't really had any relief from pain meds at all. Since the sleep deprivation is a big part of fibro it is important to discontinue the use of caffeine--it doesn't help it much, but it does help. Sometimes heat helps me, sometimes not. You sorta have to play it by ear. Kathy finaly a diagnosess. whent to the rumatologest today.. got a diagnosess finaly. I have chronic Fatuige, and Fibro. I am in soo much pain now becouse of the poking and prodding. but he sugested doing yoga and other stuff. Im having a lot of truble getting the hubby to listen to the stuff that the dr told me to do, like not to do long walks and stuff, and to do mainly yoga and water arobics..... i dont think that he understands my illness quite yet, and it hurts. I mean there is nothing much i can do and im always in pain. The rummy also told me that i should go off my harsh pain pills, the t3's and im not sure if i want to... they realy help... if anyone who has these diagnosess could let me know what they do to help the symptoms that woudl be great. well im off to bed now.. thx for everythign! Kat Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 i woudl love him to. but he cant take time off work. and even if he could... i dont think he would go.. kat finaly a diagnosess. whent to the rumatologest today.. got a diagnosess finaly. I have chronic Fatuige, and Fibro. I am in soo much pain now becouse of the poking and prodding. but he sugested doing yoga and other stuff. Im having a lot of truble getting the hubby to listen to the stuff that the dr told me to do, like not to do long walks and stuff, and to do mainly yoga and water arobics..... i dont think that he understands my illness quite yet, and it hurts. I mean there is nothing much i can do and im always in pain. The rummy also told me that i should go off my harsh pain pills, the t3's and im not sure if i want to... they realy help... if anyone who has these diagnosess could let me know what they do to help the symptoms that woudl be great. well im off to bed now.. thx for everythign! Kat Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Kat, glad you got diagnosis'! You should take your hubby to a dr appt and let the doc explain to him. Those dx don't mean life is over. Keep going so you don't get stiff. But don't over do it. You'll learn the balance. Just take care of you. x0x0x0 ShirleyKutrina wrote: whent to the rumatologest today.. got a diagnosess finaly. I have chronic Fatuige, and Fibro. I am in soo much pain now becouse of the poking and prodding. but he sugested doing yoga and other stuff. Im having a lot of truble getting the hubby to listen to the stuff that the dr told me to do, like not to do long walks and stuff, and to do mainly yoga and water arobics..... i dont think that he understands my illness quite yet, and it hurts. I mean there is nothing much i can do and im always in pain. The rummy also told me that i should go off my harsh pain pills, the t3's and im not sure if i want to... they realy help... if anyone who has these diagnosess could let me know what they do to help the symptoms that woudl be great. well im off to bed now.. thx for everythign! Kat Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 I almost didn't write this, because I hate to be discouraging at all, but...When they first put me on the antidepressants for the fibro it helped alot--then we had to increase the dose several times and eventually changed anti-depressants. That helped at first, too. Same with the exercise and stretching and meditation. I still DO all of the above because it might be worse without them--although I'm not sure how much worse. At this point I avoid caffeine, drink lots of water, take calcium and magnesium in addition to my meds and multi-vits and extra Vit E (which is supposed to help with the muscle cramps). I exercise and do gentle-stretching yoga and meditation every day. I also have muscle relaxers if it gets really bad--although I avoid extra meds if I can, and Ultracet for pain--which at this point is the only traditional pain med that has been proven to help with FMS pain. Unfortunately they don't like you taking it more than 5 days in a row and I try to adhere to that because of the tylenol and liver damage thing. And I don't like to take so many meds. I would be making a Doc appt soon if I didn't already have my new rheum one Dec 22, I'm putting a lot of hope into that visit. Every month I flare at least two weeks and each time is more severe. Pain that when all this started would have been a 10 is now maybe a five and is daily. The flares get to 10's at times. All of that said, it is most likely that the rheum will give me an additional diagnosis (maybe lupus) because the flare pattern is more typical of AI's which are progressive than of FMS which is not supposed to be. Like I said, I don't like to be discouraging, but just thought it might be better to be prepared. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Kat, for the CFS (chronic fatigue syndrome) all you can do is give in to it and rest when you need to. Sometimes walking around outside helps me even if I can't stay out long. It seems that the longer I stay in the bed, the more I want to stay there so I have to get up and about sometimes. For the fibro: warm baths, heating pads and, yes, yoga or deep breathing relaxation techniques will help relax your muscles and ease some of the pain. Other than that, you just have to work through it. Don't push yourself too hard but don't give in to it either. Find a happy medium that you're comfortable with. Glad you finally got your DX. finaly a diagnosess. whent to the rumatologest today.. got a diagnosess finaly. I have chronic Fatuige, and Fibro. I am in soo much pain now becouse of the poking and prodding. but he sugested doing yoga and other stuff. Im having a lot of truble getting the hubby to listen to the stuff that the dr told me to do, like not to do long walks and stuff, and to do mainly yoga and water arobics..... i dont think that he understands my illness quite yet, and it hurts. I mean there is nothing much i can do and im always in pain. The rummy also told me that i should go off my harsh pain pills, the t3's and im not sure if i want to... they realy help... if anyone who has these diagnosess could let me know what they do to help the symptoms that woudl be great. well im off to bed now.. thx for everythign! Kat Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Kat - For fibro its ususally basically muscle relaxers, a good multi-vitiamin, and someting for the pain. You might want to get your pain meds changed off the t3's, if you take much of it and are taking it for quite awhile thats a lot of tyelonol in your system. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Regarding Ultracet, it doesn't do anything for me anymore. Sharon Re: finaly a diagnosess. > I almost didn't write this, because I hate to be discouraging at all, but...When they first put me on the antidepressants for the fibro it helped alot--then we had to increase the dose several times and eventually changed anti-depressants. That helped at first, too. Same with the exercise and stretching and meditation. I still DO all of the above because it might be worse without them--although I'm not sure how much worse. > At this point I avoid caffeine, drink lots of water, take calcium and magnesium in addition to my meds and multi-vits and extra Vit E (which is supposed to help with the muscle cramps). I exercise and do gentle-stretching yoga and meditation every day. I also have muscle relaxers if it gets really bad--although I avoid extra meds if I can, and Ultracet for pain--which at this point is the only traditional pain med that has been proven to help with FMS pain. Unfortunately they don't like you taking it more than 5 days in a row and I try to adhere to that because of the tylenol and liver damage thing. And I don't like to take so many meds. I would be making a Doc appt soon if I didn't already have my new rheum one Dec 22, I'm putting a lot of hope into that visit. > Every month I flare at least two weeks and each time is more severe. Pain that when all this started would have been a 10 is now maybe a five and is daily. The flares get to 10's at times. > All of that said, it is most likely that the rheum will give me an additional diagnosis (maybe lupus) because the flare pattern is more typical of AI's which are progressive than of FMS which is not supposed to be. > Like I said, I don't like to be discouraging, but just thought it might be better to be prepared. > Kathy > > > > Please visit our website at: > http://ACES_Autoimmune.tripod.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Regarding Ultracet, it doesn't do anything for me anymore. Sharon Re: finaly a diagnosess. > I almost didn't write this, because I hate to be discouraging at all, but...When they first put me on the antidepressants for the fibro it helped alot--then we had to increase the dose several times and eventually changed anti-depressants. That helped at first, too. Same with the exercise and stretching and meditation. I still DO all of the above because it might be worse without them--although I'm not sure how much worse. > At this point I avoid caffeine, drink lots of water, take calcium and magnesium in addition to my meds and multi-vits and extra Vit E (which is supposed to help with the muscle cramps). I exercise and do gentle-stretching yoga and meditation every day. I also have muscle relaxers if it gets really bad--although I avoid extra meds if I can, and Ultracet for pain--which at this point is the only traditional pain med that has been proven to help with FMS pain. Unfortunately they don't like you taking it more than 5 days in a row and I try to adhere to that because of the tylenol and liver damage thing. And I don't like to take so many meds. I would be making a Doc appt soon if I didn't already have my new rheum one Dec 22, I'm putting a lot of hope into that visit. > Every month I flare at least two weeks and each time is more severe. Pain that when all this started would have been a 10 is now maybe a five and is daily. The flares get to 10's at times. > All of that said, it is most likely that the rheum will give me an additional diagnosis (maybe lupus) because the flare pattern is more typical of AI's which are progressive than of FMS which is not supposed to be. > Like I said, I don't like to be discouraging, but just thought it might be better to be prepared. > Kathy > > > > Please visit our website at: > http://ACES_Autoimmune.tripod.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 I know I'm down because right now I'm not seeing the light at the end of the tunnel, and I'm feeling totally worthless. This will pass, it is very unusual for me, I'm usually very positive. Girlfriend that's what we're here for, to talk you up, prop you up, tie a couple of hundred helium ballons on you, or whatever it takes to get you up! I so totally know what you mean and I hear your heart crying and mine is answering. Okay, now that's starting to sounds like a country and western song. Maybe we can all add to it and get rich! Big gentle hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 I know I'm down because right now I'm not seeing the light at the end of the tunnel, and I'm feeling totally worthless. This will pass, it is very unusual for me, I'm usually very positive. Girlfriend that's what we're here for, to talk you up, prop you up, tie a couple of hundred helium ballons on you, or whatever it takes to get you up! I so totally know what you mean and I hear your heart crying and mine is answering. Okay, now that's starting to sounds like a country and western song. Maybe we can all add to it and get rich! Big gentle hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Kat--Also, in addition to the regular multi-vit, some extra calcium and magnesium have been shown to help in tests. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 It doesn't do a whole lot for me, either. Kathy Re: finaly a diagnosess.> I almost didn't write this, because I hate to be discouraging at all,but...When they first put me on the antidepressants for the fibro it helpedalot--then we had to increase the dose several times and eventually changedanti-depressants. That helped at first, too. Same with the exercise andstretching and meditation. I still DO all of the above because it might beworse without them--although I'm not sure how much worse.> At this point I avoid caffeine, drink lots of water, take calcium andmagnesium in addition to my meds and multi-vits and extra Vit E (which issupposed to help with the muscle cramps). I exercise and dogentle-stretching yoga and meditation every day. I also have musclerelaxers if it gets really bad--although I avoid extra meds if I can, andUltracet for pain--which at this point is the only traditional pain med thathas been proven to help with FMS pain. Unfortunately they don't like youtaking it more than 5 days in a row and I try to adhere to that because ofthe tylenol and liver damage thing. And I don't like to take so many meds.I would be making a Doc appt soon if I didn't already have my new rheum oneDec 22, I'm putting a lot of hope into that visit.> Every month I flare at least two weeks and each time is more severe. Painthat when all this started would have been a 10 is now maybe a five and isdaily. The flares get to 10's at times.> All of that said, it is most likely that the rheum will give me anadditional diagnosis (maybe lupus) because the flare pattern is more typicalof AI's which are progressive than of FMS which is not supposed to be.> Like I said, I don't like to be discouraging, but just thought it might bebetter to be prepared.> Kathy>>>> Please visit our website at:> http://ACES_Autoimmune.tripod.com>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Thanks, ! I would think between the bunch of us we could right a really, really good country song, LOL. I had stopped my trazodone a few weeks ago because I was having ringing in my ears and that was the only med that listed that as a side-effect. I was off it long enough to determine it most likely wasn't from that. Plus my sinuses were acting up which can cause that, and both my parents told me their ears ring--which I don't know why they didn't ever mention before, LOL. Anyway I've now taken the trazodone the last two nights and am feeling somewhat better. I didn't quit my Zoloft at all, of course, but I guess it can't do all the work itself. Especially since the trazodone helps you sleep as well, and even with it I don't sleep much. I think I set myself up for being down. (now that would be a good line for our song, LOL) Anyway, thanks, I seem to be on the road to my usual self, mood wise. Pain wise, still bad. The wind has slowed down now that we had that huge rain/wind storm yesterday, and the sun is out, but now the temp is dropping again. It's always something, LOL (((Hugs))) Kathy RE: finaly a diagnosess. I know I'm down because right now I'm not seeing the light at the end of the tunnel, and I'm feeling totally worthless. This will pass, it is very unusual for me, I'm usually very positive. Girlfriend that's what we're here for, to talk you up, prop you up, tie a couple of hundred helium ballons on you, or whatever it takes to get you up! I so totally know what you mean and I hear your heart crying and mine is answering. Okay, now that's starting to sounds like a country and western song. Maybe we can all add to it and get rich! Big gentle hugs, Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
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