Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 Hi Carol, Welcome. I have CFIDS. Was diagnosed last fall. I'm still learning and this list has helped me sift through symptoms and meds. Good luck. Judi, in southern California Recently diagnosed... Hi Everyone: I was diagnosed by my MD last Friday with Fibromyalgia and TMJ, and am looking for any advice about treatment options, coping techniques, etc. I have been misdiagnosed with various infections for about 18 months, so I am not new to the symptoms, per se. My MD apologized for not seeing this sooner, and said he would come up with a " comprehensive treatment plan " in the next two weeks. He also referred me to an oral surgeon who specializes in TMJ for the excruciating pain in my jaw. As I said, any advice or new friendships are appreciated! I am glad to finally have a name for all this, but am pretty scared, too! Warmest regards, Carol ms-canplat@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 In a message dated 4/11/99 10:22:22 AM Eastern Daylight Time, ms-canplat@... writes: << I was diagnosed by my MD last Friday with Fibromyalgia and TMJ, and am looking for any advice about treatment options, coping techniques, etc. I have been misdiagnosed with various infections for about 18 months, >> I don't think you've got only fibromyalgia with those 18 months of infection. It points more to CFIDS (CFS) with fibromyalgia. If you e-mail your address (snail), I can send you some basic information on both illnesses so you can see for yourself where you fit in. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 In a message dated 4/11/99 10:22:21 AM Eastern Daylight Time, ms-canplat@... writes: > I am glad to finally have a name for all this, but am pretty scared, too! > Hello Carol...... Don't be scared, look at all the new friendly friends you just made ! You won't be scared anymore but You sure might get a headache from us ! Lots of info and gossip ! Take it from a retired florist but I agree with Gail, when you wrote infections, that caught my eye, = CFS,CFIDS, but also seems like fms and cfs is sometimes joined at the hip.... What infections did they dx you with ? Glad to see You in in our group ! Take care, Susy dog.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 In a message dated 4/11/99 10:22:21 AM Eastern Daylight Time, ms-canplat@... writes: > " comprehensive treatment plan " also Carol...what does this mean ! ? ! Drugs or vits or exercise or all of the above ! Thank you...... Susy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 Hi Gail: My snail mail info is: Carol P.O. Box 2585 Apopka, FL 32704-2585 But, they never had any concrete evidence of infection. I kept having urinary difficulties, so they gave me antibiotics. I never had an abnormal blood test that indicated infection...the doctor simply had no idea why I was having the difficulties. So, he prescribed antibiotics. After the urinary, it was sinus. Then my ear stuffiness. And, every time, he simply gave me more antibiotics. I didn't really get results from them. But, I kept hoping I'd get better. But, the info would be appreciated. Warm Hugs, Carol Re: Recently diagnosed... > From: GAILRONDA@... > > In a message dated 4/11/99 10:22:22 AM Eastern Daylight Time, > ms-canplat@... writes: > > << I was diagnosed by my MD last Friday with Fibromyalgia and TMJ, and am > looking for any advice about treatment options, coping techniques, etc. I > have been misdiagnosed with various infections for about 18 months, >> > I don't think you've got only fibromyalgia with those 18 months of infection. > It points more to CFIDS (CFS) with fibromyalgia. If you e-mail your address > (snail), I can send you some basic information on both illnesses so you can > see for yourself where you fit in. > Gail > > ------------------------------------------------------------------------ > Looking for the perfect gift for a friend? > http://www.ONElist.com > Tell them about ONElist's 115,000 free e-mail communities! > ------------------------------------------------------------------------ > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 Hi Suzy: I think it means a little of everything. I suspect it also means he doesn't know that much about the disease, since he told me he'd need time to look things up. I started Co Q-10 and a bowel cleansing program tonight, from the things I've read. I am also taking soma for the TMJ, and have some Lorcet that I take when it gets really bad. The infections never showed up on the blood tests, but they thought the urinary probs were from an infection. Then the sinus problems, then the ear stuffiness they attributed to infection... Warm Hugs, Carol Re: Recently diagnosed... > From: SUSYDOG@... > > In a message dated 4/11/99 10:22:21 AM Eastern Daylight Time, > ms-canplat@... writes: > > > " comprehensive treatment plan " > also Carol...what does this mean ! ? ! Drugs or vits or exercise or all > of the above ! > Thank you...... > Susy > > ------------------------------------------------------------------------ > HOW YA FEELIN'? Find out with your free Personal Health Report. > It's easy, it's fun, it's confidential and it's free. > /ad/ivillage1 > ------------------------------------------------------------------------ > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 1999 Report Share Posted April 11, 1999 Responding to Carol: < I don't think you've got only fibromyalgia with those 18 months of infection. It points more to CFIDS (CFS) with fibromyalgia. If you e-mail your address (snail), I can send you some basic information on both illnesses so you can see for yourself where you fit in. Gail > Also, I have a CFIDS/ME site at http://www.geocities.com/HotSprings/5762/ that has a basic info page on it. You might have both CFIDS and FM going on. Jen http://www.munn.com/~jmunn/ * ICQ#: 24565068 * AIM: Jen PWC " You don't always have your health but YOU decide if you keep your spirit. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 1999 Report Share Posted April 12, 1999 Hi Carol, A good friend of mine, who is a nurse, has FMS and she is constantly in pain. She part of a support group that meets once a month in our area. For her it really helps boost her morale(sp). I'll check with her to see how she heard about this group. Maybe there is one in you area too. Now if you just could feel like going, right? Yes, I went through a time of depression. It's like you are grieving for the way your life used to be. And my mood swings were wild. My doctor put me on an anti-depressant and that has helped. But it still is depressing when friends, people who know you, look at you and because you don't look like you are dying or you aren't missing a limb, they think you are okay and you know that you aren't. Some of them don't want to hear that you aren't " okay " either. Is your family supportive? You may have answered this before and I missed it. I sure am glad that my husband is supportive. He helps with doing the wash, loading and unloading the dishwasher, etc. And he is the one who encouraged me to hire someone to clean the house. That was the hardest thing for me to accept, that I just didn't have the energy to do all the house work. I felt guilty for----about 10 min. haha I got over it real quick when I realized that seeing things that needed to be done and not being able to do them put alot of stress on me that I didn't need. Getting someone else to clean lifted that load and stress off of me. I'll put you at the top of my prayer list. Hugs, Judi in southern Ca. Re: Recently diagnosed... Hi Judi: Thanks for the welcome. I'm still sifting through the info, and am not sure if I have simply (!) Fibromyalgia and TMJ, or CFIDS. I am still having trouble figuring out exactly what symptoms distinguish the two diseases. I don't know if you went through depression after your diagnosis, that is what I am suffering from today. The pain is sometimes overwhelming. And, to know that there is no quick end in sight, has really affected me emotionally. And, I am normally the most optimistic person you could imagine! I suppose it takes time to accept the limitations. I have a call in to my MD to ask about an anti-depressant. Also, the pain med he prescribed is not adequately helping my TMJ right now, and I have another week until I see the specialist. I hate the thought that I need pain medication, I don't like the " drugged " feeling. But, the pain is so bad, I cannot concentrate on everyday activities. And, I feel bad about having to ask for pain meds. Like it's a weakness, or he will think me " drug seeking " . Although, he knows how much I'm suffering, and he apologized for the diagnosis taking so long. Sorry to vent. I struggled through the day at work, and there is nobody I can share with. I know they are all sick to death of my being ill. I even asked my supervisor if she wanted me to take a leave of absence until this is better under control. She said I am keeping up on all my work, and can set my own hours right now based on how I feel, as long as the work gets done. I suppose I am very blessed in that sense! Thank you for listening. Hugs, Carol Recently diagnosed... Hi Everyone: I was diagnosed by my MD last Friday with Fibromyalgia and TMJ, and am looking for any advice about treatment options, coping techniques, etc. I have been misdiagnosed with various infections for about 18 months, so I am not new to the symptoms, per se. My MD apologized for not seeing this sooner, and said he would come up with a " comprehensive treatment plan " in the next two weeks. He also referred me to an oral surgeon who specializes in TMJ for the excruciating pain in my jaw. As I said, any advice or new friendships are appreciated! I am glad to finally have a name for all this, but am pretty scared, too! Warmest regards, Carol ms-canplat@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 1999 Report Share Posted April 12, 1999 hi carol, welcome. you are so lucky to have flexiable hours a6 your job. i worked being sick( full time and later part time(please note: that each of us has different set of medical promblems and different level of illness.) it was so stress ful trying to keep up with my job and not to be sick or act sick while i was on the job. this is the higest level of stress while you are ill and trying to keep up with things and be on top of your job like before. so hang in there and feel free to vent and share with us. hang in there. :)ellice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 1999 Report Share Posted April 12, 1999 Hi Judi: Thanks for the welcome. I'm still sifting through the info, and am not sure if I have simply (!) Fibromyalgia and TMJ, or CFIDS. I am still having trouble figuring out exactly what symptoms distinguish the two diseases. I don't know if you went through depression after your diagnosis, that is what I am suffering from today. The pain is sometimes overwhelming. And, to know that there is no quick end in sight, has really affected me emotionally. And, I am normally the most optimistic person you could imagine! I suppose it takes time to accept the limitations. I have a call in to my MD to ask about an anti-depressant. Also, the pain med he prescribed is not adequately helping my TMJ right now, and I have another week until I see the specialist. I hate the thought that I need pain medication, I don't like the " drugged " feeling. But, the pain is so bad, I cannot concentrate on everyday activities. And, I feel bad about having to ask for pain meds. Like it's a weakness, or he will think me " drug seeking " . Although, he knows how much I'm suffering, and he apologized for the diagnosis taking so long. Sorry to vent. I struggled through the day at work, and there is nobody I can share with. I know they are all sick to death of my being ill. I even asked my supervisor if she wanted me to take a leave of absence until this is better under control. She said I am keeping up on all my work, and can set my own hours right now based on how I feel, as long as the work gets done. I suppose I am very blessed in that sense! Thank you for listening. Hugs, Carol Recently diagnosed... Hi Everyone: I was diagnosed by my MD last Friday with Fibromyalgia and TMJ, and am looking for any advice about treatment options, coping techniques, etc. I have been misdiagnosed with various infections for about 18 months, so I am not new to the symptoms, per se. My MD apologized for not seeing this sooner, and said he would come up with a " comprehensive treatment plan " in the next two weeks. He also referred me to an oral surgeon who specializes in TMJ for the excruciating pain in my jaw. As I said, any advice or new friendships are appreciated! I am glad to finally have a name for all this, but am pretty scared, too! Warmest regards, Carol ms-canplat@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 Hi Carol, I can totally relate to what you are saying. I don't have the pain as bad as you do. But without support of my husband I would go crazy. I'm not sure my mother, sister and family back in the Kansas City area understand. My Mom is a work alcoholi(sp) and though she never says anything or acts like I shouldn't feel tired, I still feel guilty. And I've been told by good meaning people that I should just " buck up " and trust God. When this person called me and told me this on the phone I tried to politely tell her that I couldn't talk anymore. Some people will never understand and don't want to try. Others don't understand and want to because they love us. I can relate about being angry and frustrated with coworkers and others around us. Everybody irritated me, no particular reason but I was easily irritated. And angry and frustrated with my husband, and I'm married to the sweetest man there is. That's one reason the doctor put me on Celexa, to help the depression and irritation. I was irritated with people in stores, clerks, people in line. Then a good friend who has CFIDS/FMS and is a nurse suggested that I might have CFIDS. She thought I should talk to my doctor. At first I was real defensive with her. Not me, I don't have this, yes I get sick with every little thing that comes around but not this. What she was seeing was the change in my personality. I used to love being with people, I liked knowing and talking to everyone and listening to their problems and talking things through. When this started I couldn't handle those " high maintenance " people. Ones who wanted to talk on the phone for a couple of hours and wanted me to run errands for them etc. Then I could hardly stand going to church because just being with a large group of people exhausted me. I became kind of a " hermit " for a while. But I needed that time for complete rest and quite. No stress! I couldn't have gone through the first part of this as well it I'd had a full time job. When you began to see that your life is different, but not gone completely, you began to learn your limits. You learn where the " invisible line " is that if you cross it you " crash " . I'm sure others would agree with me that we have learned that even on our very best days, when we feel like we could spring clean the house from top to bottom, that we don't because we know that we will pay for it for days afterwards. We learn to do a little at a time until we learn where that " invisible line " is. Your not alone Carol, there's a bunch of us out there sending " gentle hugs " to you and praying for your emotional health as well as your physical health. Physical definitely affects the emotional. I hope that you feel that support from all of us on this list. And that you will never feel that you can't share something that is really bothering you. Hang in there. {{{{{{{{{hugs}}}}}}}}}}} Judi Re: Recently diagnosed... Hi Judi: Sorry for the late reply. I wish I had someone to help with the housework. Or to even understand, for that matter. My spouse is not understanding in the least. I feel like everyone (family, friend, co-workers) is of the attitude that if I just " buck up " and go on with my life, everything would be fine. And, I am usually the most optimistic person I know! I think the difference is that before I thought all this was temporary (an illness that would go away, has a cure...), now there is no end in sight, and that is getting to me. Pain is easier to cope with, for me, when I think it is short-term. But, I'm sure once things get better under control, I will be functioning on a higher level. I hope! I thought I would collapse today (or cry from the pain) I hurt so bad, and felt so exhausted. And if I take the pain meds or the muscle relaxant (Soma - for the TMJ), I am too groggy to get anything done. I came home and took it...after 8 hrs of suffering... I am short with my co-workers now, because I hurt. I am normally a very gregarious person, and never lose my temper. I feel very guilty about this. Have you ever experienced these things? I also have a problem in that I really hate taking medications of any type. I don't like the " out of control " feeling. But, the pain is just too unbearable right now. (So, I take them and feel guilty about that, too!) I'm a mess emotionally, right now. I am normally so much more " together " ! Thanks for listening! Gentle hugs, Carol Recently diagnosed... Hi Everyone: I was diagnosed by my MD last Friday with Fibromyalgia and TMJ, and am looking for any advice about treatment options, coping techniques, etc. I have been misdiagnosed with various infections for about 18 months, so I am not new to the symptoms, per se. My MD apologized for not seeing this sooner, and said he would come up with a " comprehensive treatment plan " in the next two weeks. He also referred me to an oral surgeon who specializes in TMJ for the excruciating pain in my jaw. As I said, any advice or new friendships are appreciated! I am glad to finally have a name for all this, but am pretty scared, too! Warmest regards, Carol ms-canplat@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 Marcia had some really good advice!! REST! REST! REST! [[[[[[[[[HUGS]]]]]]]]]] Judi Re: Recently diagnosed... ms-canplat@... wrote: I thought I would collapse today (or cry from the pain) I hurt so bad, and felt so exhausted. And if I take the pain meds or the muscle relaxant (Soma - for the TMJ), I am too groggy to get anything done. I came home and took it...after 8 hrs of suffering... I am short with my co-workers now, because I hurt. I am normally a very gregarious person, and never lose my temper. I feel very guilty about this. Have you ever experienced these things? I also have a problem in that I really hate taking medications of any type. I don't like the " out of control " feeling. But, the pain is just too unbearable right now. (So, I take them and feel guilty about that, too!) I'm a mess emotionally, right now. I am normally so much more " together " ! Hi Carol! I have felt everything you just said!!!! Try not to feel guilty about all this. We have all been when you are and understand how frustrated and isolated you feel because it seems its all so unbearable and no one understands! I'm glad you found this list because the support and knowledge of others with the illness is invaluable. You will find answers here about possible treatments and supplements to try to make your life more comfortable. Over time you will learn your limits and triggers and be able to order and organize your life around them better to get more out of the life you do still have. We with CFS and FMS can actually sometimes accomplish a lot if we can do it at our own pace and terms. Its natural to feel many things, anger, grief, depression, hopelessness, but I think in most cases our former strenghts still show through and pull us out of them all. Its a time to learn much about your self, your life, goals, etc. Maybe you will learn things you don't want to know about family, friends and the medical profession, but I guess we are forced to accept " reality " . Try to find your limits and once they are met, REST, REST, REST! Guilt over this is completely NONproductive! Take care, and don't forget there is a great resource of ino in the archives for this list on all the treatments we have been discussing. has been organizing and compiling it all for reference for us. Take care all! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 Hi Judi: Sorry for the late reply. I wish I had someone to help with the housework. Or to even understand, for that matter. My spouse is not understanding in the least. I feel like everyone (family, friend, co-workers) is of the attitude that if I just " buck up " and go on with my life, everything would be fine. And, I am usually the most optimistic person I know! I think the difference is that before I thought all this was temporary (an illness that would go away, has a cure...), now there is no end in sight, and that is getting to me. Pain is easier to cope with, for me, when I think it is short-term. But, I'm sure once things get better under control, I will be functioning on a higher level. I hope! I thought I would collapse today (or cry from the pain) I hurt so bad, and felt so exhausted. And if I take the pain meds or the muscle relaxant (Soma - for the TMJ), I am too groggy to get anything done. I came home and took it...after 8 hrs of suffering... I am short with my co-workers now, because I hurt. I am normally a very gregarious person, and never lose my temper. I feel very guilty about this. Have you ever experienced these things? I also have a problem in that I really hate taking medications of any type. I don't like the " out of control " feeling. But, the pain is just too unbearable right now. (So, I take them and feel guilty about that, too!) I'm a mess emotionally, right now. I am normally so much more " together " ! Thanks for listening! Gentle hugs, Carol Recently diagnosed... Hi Everyone: I was diagnosed by my MD last Friday with Fibromyalgia and TMJ, and am looking for any advice about treatment options, coping techniques, etc. I have been misdiagnosed with various infections for about 18 months, so I am not new to the symptoms, per se. My MD apologized for not seeing this sooner, and said he would come up with a " comprehensive treatment plan " in the next two weeks. He also referred me to an oral surgeon who specializes in TMJ for the excruciating pain in my jaw. As I said, any advice or new friendships are appreciated! I am glad to finally have a name for all this, but am pretty scared, too! Warmest regards, Carol ms-canplat@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 ms-canplat@... wrote: > I thought I would collapse today (or cry from the pain) I hurt so > bad, and felt so exhausted. And if I take the pain meds or the muscle > relaxant (Soma - for the TMJ), I am too groggy to get anything done. > I came home and took it...after 8 hrs of suffering... I am short with > my co-workers now, because I hurt. I am normally a very gregarious > person, and never lose my temper. I feel very guilty about this. > Have you ever experienced these things? I also have a problem in that > I really hate taking medications of any type. I don't like the " out > of control " feeling. But, the pain is just too unbearable right now. > (So, I take them and feel guilty about that, too!) I'm a mess > emotionally, right now. I am normally so much more " together " ! > > Hi Carol! > > I have felt everything you just said!!!! Try not to feel guilty about > all this. We have all been when you are and understand how frustrated > and isolated you feel because it seems its all so unbearable and no > one understands! I'm glad you found this list because the support and > knowledge of others with the illness is invaluable. You will find > answers here about possible treatments and supplements to try to make > your life more comfortable. Over time you will learn your limits and > triggers and be able to order and organize your life around them > better to get more out of the life you do still have. We with CFS and > FMS can actually sometimes accomplish a lot if we can do it at our own > pace and terms. > > Its natural to feel many things, anger, grief, depression, > hopelessness, but I think in most cases our former strenghts still > show through and pull us out of them all. Its a time to learn much > about your self, your life, goals, etc. Maybe you will learn things > you don't want to know about family, friends and the medical > profession, but I guess we are forced to accept " reality " . Try to > find your limits and once they are met, REST, REST, REST! Guilt over > this is completely NONproductive! > > Take care, and don't forget there is a great resource of ino in the > archives for this list on all the treatments we have been discussing. > has been organizing and compiling it all for reference for us. > > Take care all! > > Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Hi Carol, Marcia and all, It was true and nice letter, Marcia. My opinion is the same. Becouse I live in eastern Europe, I couldn't find any support in my country, only few other sufferers but we can't meet very often because of our ilness and most people don't have a computer. I was so lucky when I joined this support group. Not only because all the information I can get, I appreciate the emotional support maybe even more and good laugh improves your cell-mediated immunity (eg. kangaroos :-)). It helps me to cope with CFS and translating and forwarding info gives me the feeling that even if ill I am able to help and be a bit useful. Good Luck Stania -----Pùvodnà zpráva----- Od: Marcia Grahn <mgrahn@...> Komu: onelist <onelist> Datum: 13. dubna 1999 22:19 Pøedmìt: Re: Recently diagnosed... ms-canplat@... wrote: I thought I would collapse today (or cry from the pain) I hurt so bad, and felt so exhausted. And if I take the pain meds or the muscle relaxant (Soma - for the TMJ), I am too groggy to get anything done. I came home and took it...after 8 hrs of suffering... I am short with my co-workers now, because I hurt. I am normally a very gregarious person, and never lose my temper. I feel very guilty about this. Have you ever experienced these things? I also have a problem in that I really hate taking medications of any type. I don't like the " out of control " feeling. But, the pain is just too unbearable right now. (So, I take them and feel guilty about that, too!) I'm a mess emotionally, right now. I am normally so much more " together " ! Hi Carol! I have felt everything you just said!!!! Try not to feel guilty about all this. We have all been when you are and understand how frustrated and isolated you feel because it seems its all so unbearable and no one understands! I'm glad you found this list because the support and knowledge of others with the illness is invaluable. You will find answers here about possible treatments and supplements to try to make your life more comfortable. Over time you will learn your limits and triggers and be able to order and organize your life around them better to get more out of the life you do still have. We with CFS and FMS can actually sometimes accomplish a lot if we can do it at our own pace and terms. Its natural to feel many things, anger, grief, depression, hopelessness, but I think in most cases our former strenghts still show through and pull us out of them all. Its a time to learn much about your self, your life, goals, etc. Maybe you will learn things you don't want to know about family, friends and the medical profession, but I guess we are forced to accept " reality " . Try to find your limits and once they are met, REST, REST, REST! Guilt over this is completely NONproductive! Take care, and don't forget there is a great resource of ino in the archives for this list on all the treatments we have been discussing. has been organizing and compiling it all for reference for us. Take care all! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Hi Carol, Hope you were able to rest today. I have noticed that since I have been ill and have met some others that have CFIDS/FMS all of us have been givers. We give of our time to make sure that others, (might be patients like in the dental office where I used to work, husbands, children, parents, and friends ) are taken care of. We don't take care of ourselves until everyone else is taken care of. And it's difficult for us to JUST TAKE CARE of US. We usually feel guilty about taking care of us first. My husband reminds me that I have to practice what he calls, " Temple maintenance " . Meaning that our bodies are temples of the Lord and we need to take care of that temple. Lately, I'm much better than I used to be. I was thinking this morning, that two years ago at my 30 year class reunion I decided that I was going to get in shape in the next two years and be better at 50 than I was at 48. Weeeeeeeell I don't think I'm going to make it. And right now I'd be satisfied with just feeling good on my 50th. I didn't go into the dental office and help today. I called and talked to the doctors wife. I had told her about my CFIDS and she read up on it. She told me that she didn't won't me to make myself sick over this computer system change and that she could get others to help enter the info. But if I felt better and would like to come in and help she would be glad for me to come. I don't know why I put the stress on myself. I guess I really did want to help them get things set up and I really enjoyed being in the office for the last couple of days. But I'm paying for it now. Some day I might learn!! Take care of yourself. {{{{{{{{hugs}}}}}} Judi Re: Recently diagnosed... Thanks, Judi. That's exactly what I plan to do today. Work just half a day, and rest! I just am at my wits end, and really sore and exhausted. Everyone else in my life, they are going to have to understand that I have to take care of me today. Hugs, Carol Re: Recently diagnosed... ms-canplat@... wrote: I thought I would collapse today (or cry from the pain) I hurt so bad, and felt so exhausted. And if I take the pain meds or the muscle relaxant (Soma - for the TMJ), I am too groggy to get anything done. I came home and took it...after 8 hrs of suffering... I am short with my co-workers now, because I hurt. I am normally a very gregarious person, and never lose my temper. I feel very guilty about this. Have you ever experienced these things? I also have a problem in that I really hate taking medications of any type. I don't like the " out of control " feeling. But, the pain is just too unbearable right now. (So, I take them and feel guilty about that, too!) I'm a mess emotionally, right now. I am normally so much more " together " ! Hi Carol! I have felt everything you just said!!!! Try not to feel guilty about all this. We have all been when you are and understand how frustrated and isolated you feel because it seems its all so unbearable and no one understands! I'm glad you found this list because the support and knowledge of others with the illness is invaluable. You will find answers here about possible treatments and supplements to try to make your life more comfortable. Over time you will learn your limits and triggers and be able to order and organize your life around them better to get more out of the life you do still have. We with CFS and FMS can actually sometimes accomplish a lot if we can do it at our own pace and terms. Its natural to feel many things, anger, grief, depression, hopelessness, but I think in most cases our former strenghts still show through and pull us out of them all. Its a time to learn much about your self, your life, goals, etc. Maybe you will learn things you don't want to know about family, friends and the medical profession, but I guess we are forced to accept " reality " . Try to find your limits and once they are met, REST, REST, REST! Guilt over this is completely NONproductive! Take care, and don't forget there is a great resource of ino in the archives for this list on all the treatments we have been discussing. has been organizing and compiling it all for reference for us. Take care all! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Thanks, Judi. That's exactly what I plan to do today. Work just half a day, and rest! I just am at my wits end, and really sore and exhausted. Everyone else in my life, they are going to have to understand that I have to take care of me today. Hugs, Carol Re: Recently diagnosed... ms-canplat@... wrote: I thought I would collapse today (or cry from the pain) I hurt so bad, and felt so exhausted. And if I take the pain meds or the muscle relaxant (Soma - for the TMJ), I am too groggy to get anything done. I came home and took it...after 8 hrs of suffering... I am short with my co-workers now, because I hurt. I am normally a very gregarious person, and never lose my temper. I feel very guilty about this. Have you ever experienced these things? I also have a problem in that I really hate taking medications of any type. I don't like the " out of control " feeling. But, the pain is just too unbearable right now. (So, I take them and feel guilty about that, too!) I'm a mess emotionally, right now. I am normally so much more " together " ! Hi Carol! I have felt everything you just said!!!! Try not to feel guilty about all this. We have all been when you are and understand how frustrated and isolated you feel because it seems its all so unbearable and no one understands! I'm glad you found this list because the support and knowledge of others with the illness is invaluable. You will find answers here about possible treatments and supplements to try to make your life more comfortable. Over time you will learn your limits and triggers and be able to order and organize your life around them better to get more out of the life you do still have. We with CFS and FMS can actually sometimes accomplish a lot if we can do it at our own pace and terms. Its natural to feel many things, anger, grief, depression, hopelessness, but I think in most cases our former strenghts still show through and pull us out of them all. Its a time to learn much about your self, your life, goals, etc. Maybe you will learn things you don't want to know about family, friends and the medical profession, but I guess we are forced to accept " reality " . Try to find your limits and once they are met, REST, REST, REST! Guilt over this is completely NONproductive! Take care, and don't forget there is a great resource of ino in the archives for this list on all the treatments we have been discussing. has been organizing and compiling it all for reference for us. Take care all! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Have your tried buprenohine since it works on both pain and depression. I have never tried it but I am thinking about it. thanks Steve > Re: Recently diagnosed... > > > Hi Judi: > > Thanks for the welcome. I'm still sifting through the info, and am > not sure if I have simply (!) Fibromyalgia and TMJ, or CFIDS. I am still > having trouble figuring out exactly what symptoms distinguish the two > diseases. > > I don't know if you went through depression after your diagnosis, > that is what I am suffering from today. The pain is sometimes > overwhelming. And, to know that there is no quick end in sight, has really > affected me emotionally. And, I am normally the most optimistic person > you could imagine! > > I suppose it takes time to accept the limitations. I have a call in > to my MD to ask about an anti-depressant. Also, the pain med he > prescribed is not adequately helping my TMJ right now, and I have another > week until I see the specialist. I hate the thought that I need pain > medication, I don't like the " drugged " feeling. But, the pain is so bad, > I cannot concentrate on everyday activities. And, I feel bad about having > to ask for pain meds. Like it's a weakness, or he will think me " drug > seeking " . Although, he knows how much I'm suffering, and he apologized > for the diagnosis taking so long. > > Sorry to vent. I struggled through the day at work, and there is > nobody I can share with. I know they are all sick to death of my being > ill. I even asked my supervisor if she wanted me to take a leave of > absence until this is better under control. She said I am keeping up on > all my work, and can set my own hours right now based on how I feel, as > long as the work gets done. I suppose I am very blessed in that sense! > > Thank you for listening. > > Hugs, > Carol > > Recently diagnosed... > > > Hi Everyone: > > I was diagnosed by my MD last Friday with > Fibromyalgia and TMJ, and am looking for any advice about treatment > options, coping techniques, etc. I have been misdiagnosed with various > infections for about 18 months, so I am not new to the symptoms, per se. > My MD apologized for not seeing this sooner, and said he would come up > with a " comprehensive treatment plan " in the next two weeks. He also > referred me to an oral surgeon who specializes in TMJ for the excruciating > pain in my jaw. > > As I said, any advice or new friendships are > appreciated! I am glad to finally have a name for all this, but am pretty > scared, too! > > Warmest regards, > Carol > ms-canplat@... > <mailto:ms-canplat@...> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Thanks, Judi. That's exactly what I am learning right now! Hugs, Carol Re: Recently diagnosed... ms-canplat@... wrote: I thought I would collapse today (or cry from the pain) I hurt so bad, and felt so exhausted. And if I take the pain meds or the muscle relaxant (Soma - for the TMJ), I am too groggy to get anything done. I came home and took it...after 8 hrs of suffering... I am short with my co-workers now, because I hurt. I am normally a very gregarious person, and never lose my temper. I feel very guilty about this. Have you ever experienced these things? I also have a problem in that I really hate taking medications of any type. I don't like the " out of control " feeling. But, the pain is just too unbearable right now. (So, I take them and feel guilty about that, too!) I'm a mess emotionally, right now. I am normally so much more " together " ! Hi Carol! I have felt everything you just said!!!! Try not to feel guilty about all this. We have all been when you are and understand how frustrated and isolated you feel because it seems its all so unbearable and no one understands! I'm glad you found this list because the support and knowledge of others with the illness is invaluable. You will find answers here about possible treatments and supplements to try to make your life more comfortable. Over time you will learn your limits and triggers and be able to order and organize your life around them better to get more out of the life you do still have. We with CFS and FMS can actually sometimes accomplish a lot if we can do it at our own pace and terms. Its natural to feel many things, anger, grief, depression, hopelessness, but I think in most cases our former strenghts still show through and pull us out of them all. Its a time to learn much about your self, your life, goals, etc. Maybe you will learn things you don't want to know about family, friends and the medical profession, but I guess we are forced to accept " reality " . Try to find your limits and once they are met, REST, REST, REST! Guilt over this is completely NONproductive! Take care, and don't forget there is a great resource of ino in the archives for this list on all the treatments we have been discussing. has been organizing and compiling it all for reference for us. Take care all! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2002 Report Share Posted December 28, 2002 Hi KimAlisa, Ask your Dr. about your supplements.. I am not really sure what you need to be taking as far as supplements go. Make sure you research Prednisone, and that you feel OK being on that drug. (it has very serious long term side effects, so make sure your benefits on this drug are worth the risk.) I am on Sulfa and Celebrex. Sulfa has really worked well for me, and has few side effects for most people. (it's very mild compared to other alternate drugs.) Are you taking the Folic Acid because of the Sulfa or the Prednisone? That would interest me, because my Dr. said nothing about taking any supplements, and I haven't found anything anywhere about taking supplements while taking Sulfa. Glad to see you in the group! In a message dated 12/28/02 7:16:40 PM Eastern Standard Time, Kimalisa1@... writes: > I have only been diagnosed with PA for about a month now, so it is > still rather overwhelming. I have a couple of questions though, hope > you can help. I am on Sulfasalazine, 2000 mgs a day, and Prednisone, > 10 mg a day, I know I need to be taking Calcium w/D and Folic Acid, > but how much exactly? I know I will have more questions later on, but > for now, this seemed most pertinent. Thanks. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 Hi Tink - I was told to take at least 2000 mcg (micrograms) of folic acid. In the drugstore they come in 400 mcg and 800 mcg so I take 4 400 mcg and there are 400 mcg in the daily multi-vitamin I take. As a woman over 50, I take the Calcium+D. Hope this helps. J [ ] recently diagnosed... I have only been diagnosed with PA for about a month now, so it is still rather overwhelming. I have a couple of questions though, hope you can help. I am on Sulfasalazine, 2000 mgs a day, and Prednisone, 10 mg a day, I know I need to be taking Calcium w/D and Folic Acid, but how much exactly? I know I will have more questions later on, but for now, this seemed most pertinent. Thanks. Please visit our Psoriatic Arthritis Group's informational web page at: http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). In August 2001 list member Jack aka(Cornishpro@...) began to conduct extensive research which he publishes as the Psoriatic Arthritic Research Newsletter monthly in our emails and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage. Also remember that the list archives comprise a tremendous amount of information (Over two years of messages and answers).Feel free to browse them at your convenience. Let's hear from some of you lurkers out there! If you have a comment or question chances are there is a person who has been around a while who can help you out with an educated guess for an answer. If not we can at least steer you in the right direction with a good website to go to for the answers. Blessings and Peace, Atwood-Stack, Founder Alan , Web & List Editor Jack , Newsletter Editor Pat Bias, List Editor Ron Dotson, List Editor and many others who help moderate (thank you!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2010 Report Share Posted May 12, 2010 Hi, I really sympathise with you. I suffered severly with my second pregnancy. Like you I was told for many years that it was some kind of indigestion, even though I was continuously losing weight. My first pregnancy was bad, especially in the latter months, but my second was awful from 3 months until I gave birth, prematurely. I was told it was all in my head and they were treating me for hyperemasis (think that's the spelling)I spent most of my pregnancy in hospital as I couldn't eat or drink and was subsequently very weak. I was continuously monitored, but none of the medication worked. To cut a long story short, once I gave birth they began investigating and found that I had candida of the stomach, which is an opportunist infection that manifest through malnutrition. I then had a Barium test which showed I had Achalasia, which I had never heard of and what a refief to find that it was not all in my mind as suggested. I since have had a dilation which seems to have improved my eating. We are now wanting to try for our third child and I have been referred to the gastroenterology department as I need to know if there is any medication I can receive if any if it were all to flare up again......my family and myself could not go through this again. I totally understand what you are going through, it is physical and mental torture and leaves you completely drained and friends and family think they can relate to this condition, but only you know what you are going through. I was told that I would probably not be able to bond with my child as I got so low and felt completely shut off from the rest of the world. That was not the case fortunately, but it was a possibility. I have my appointment soon,if I am given any advice or worthy suggestions I will pass them on...... Wish me luck! > > My struggles were finally given a name after 2 1/2 years of being told if I just lost some weight they would go away!!! I was diagnosed in Jan. with achalasia and am in the process of planning a trip to the Cleveland Clinic for surgery!!! I am pretty sure I am doing the right thing! Would love any feed back! > > I am a 34 yr. old female, I started having troubles swallowing after I gave birth to my second child, it was a very difficult pregnancy!!! Started talking with different Dr. who all treated me like I was making it up... so in Oct. 08 stopped trying to figure it out and started to add to our little family... our son was born in Aug 09. :-) Pregnancy went well, symptoms seemed to lessen... but have come back with a vengeance! Finally diagnosed in Jan. 10 and have done all the necessary testing to move forward. > > A few questions.... > > I am still nursing my son...How long after lap surgery can I start nursing again? Are there any other young moms out there? If so how do you deal with this all and keep your energy up enough to chase kiddos... I am tired of parenting while throwing up and not sleeping great at night because of choking??? (Trying to stay positive, this is NOT who I am...) > > What herbal teas have helped any of you???? > > I am sure I will have a lot more questions, right now I just need to know that this can get better and not kill me in the process! > > Thanks, mtmommy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 my name is jacqui and i am a young mother and my 3 year old son was just diagnosed with aspergers. i am having new behavior issues with him, and i just dont know where to turn. i am hoping to meet parents who have some guidance and support. i just keep thinking that i will wake up from this dream, but i am greeted with this reality daily. Quote Link to comment Share on other sites More sharing options...
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