Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 Is that where your liver is? Do they know what the pain is from? Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 Yes, I get pain in right rib cage, and right below. The pain is so bad sometimes, I brea out into a seawt, and it feels like something is tearing out my qut. Sometimes it is so bad that I can't move. --- sharon3028@... wrote: > Does anyone have pain? I had some really BAD PAIN > today in my right side > around my rib cage...actually below it...I was ready > to SCREAM! The pain was > throbbing...and like nothing I'd never felt before. > It came and went like > 4-5 times today. > > Sharon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 I had that in the beginning when I was first diagnosed. It eventually went away though.. Heidi Gardarsson > Does anyone have pain? I had some really BAD PAIN today in my right side > around my rib cage...actually below it...I was ready to SCREAM! The pain was > throbbing...and like nothing I'd never felt before. It came and went like > 4-5 times today. > > Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 > Is that where your liver is? Do they know what the pain is from? > > Sharon Sharon.... we`ve gone over this a lot before..... the pain isn`t actually your liver as it has no painreceptors... but rather the swelling of the liver pushing on the surrounding tissues and bones.... I have some info on it that I`ll send when I find it... (thanks Joanne) Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 I've had that pain before I was dx'ed, had it for almost a year. It was unbearable! It also returned a few months ago when I relapsed. -Clyde Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Hi Anne....thank you for the reply. That it actually what I was thinking. I know there are many many strains of bacteria. I was wondering...what condition are you using AP for? keep me posted on how you are doing. Good luck to you. , I recently started on AP and have not been tested for mycoplasma. As Ethel pointed out in her recent post, there are organisms besides mycoplasma that may cause rheumatic conditions. My AP doctor believes that mutant bacteria, not mycoplasma, are responsible. He points out that there are sonething like a million strains of bacteria suspected to exist but not yet identified. Mycoplasma testing has been helpful to some patients because a positive test result may help with insurance issues or in determining which antibiotic will provide the most effective treatment. Not all doctors do mycoplasma testing, and for now, I'm happy not to be tested. I am going to follow the AP protocol and see what progress I make in 6 months before considering further testing or AP treatment options. Just thought I'd share my 2 cents! Best of luck to you from another newbie! Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Yes don't be surprised if your Lyme test comes back negative. Mine all did. I don't have Lyme tho - LOL! Was convinced for a long time that I did - until Doc Sinnott in Iowa sent my blood to a lab in land (PCR) and it came back positive for Mycoplasma Fermentans. I responded almost immediately to the treatment. I am a 32 year old stay-at-home-mom to 3 children. We own a trucking business so my husband is gone all the time as he's an owner/operator. It's been very tough. I wouldn't wish what has happened to me on my worst enemy. My story is at rheumatic.org. Keep on with your doctor - if you do have a positive mycoplasma you need to know! I also recommend having your ASO Titer checked if you haven't already. Treating the mycoplasma and not treating strep in your system will render the AP useless. (I am being treated for both) You're on the right track ! Keep advocating and educating yourself - no one cares about your body like you do! Jodi Fadness, CD (DONA) Minnesota Doula SAHM to Ashlea (6yrs), Katelyn (almost 4yrs), Lars (almost 2yrs) Rheumatoid Arthritis (7yrs) - Sjogrens Syndrome (1.5yrs) - AP 13mos At 02:53 AM 11/7/02 -0000, you wrote: >I am 28 years old with dermatomyositis...I have gotten some great >responses back from my first post and am looking forward to talking >more with those who responded. I am doing a lot of research but I >am still not clear on whether or not most have a positive mycoplasma >test that do the AP therapy. And what test should I ask my doc >for...the PCR? I am going to do the AP regardless but I am aware it >will be easier if I have a positive mycoplasma test? I finally >convinced my docs to test me for lyme cosidering I grew up in a high >risk area. They fought me but I won. But because of immunoglobulin >treatments the test could be false positive or negative. So, I am >trying to get together research on AP therapy in high hopes the docs >I have now will help me. Hope all is going well for everyone. > >sending you all thoughts of healing > > > > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 , The mycoplasma test that was run before I started therapy turned out negative. It was only after I had been on the antibiotics for a while that those 'critters' were uncovered. This is not unusual. Then I tested high for m. fermentans, m. salivarium and m. pneumoniae. Mycoplasma are not the only organisms that cause these problems. Ethel RA 1972, PM 1979, SS 1983 LP 1994 & 1999 - all in remission rheumatic question for everyone > I am 28 years old with dermatomyositis...I have gotten some great > responses back from my first post and am looking forward to talking > more with those who responded. I am doing a lot of research but I > am still not clear on whether or not most have a positive mycoplasma > test that do the AP therapy. And what test should I ask my doc > for...the PCR? I am going to do the AP regardless but I am aware it > will be easier if I have a positive mycoplasma test? I finally > convinced my docs to test me for lyme cosidering I grew up in a high > risk area. They fought me but I won. But because of immunoglobulin > treatments the test could be false positive or negative. So, I am > trying to get together research on AP therapy in high hopes the docs > I have now will help me. Hope all is going well for everyone. > > sending you all thoughts of healing > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 , I recently started on AP and have not been tested for mycoplasma. As Ethel pointed out in her recent post, there are organisms besides mycoplasma that may cause rheumatic conditions. My AP doctor believes that mutant bacteria, not mycoplasma, are responsible. He points out that there are sonething like a million strains of bacteria suspected to exist but not yet identified. Mycoplasma testing has been helpful to some patients because a positive test result may help with insurance issues or in determining which antibiotic will provide the most effective treatment. Not all doctors do mycoplasma testing, and for now, I'm happy not to be tested. I am going to follow the AP protocol and see what progress I make in 6 months before considering further testing or AP treatment options. Just thought I'd share my 2 cents! Best of luck to you from another newbie! Anne -- In rheumatic@y..., " Nicometo " <dellatigre2@y...> wrote: > I am 28 years old with dermatomyositis...I have gotten some great > responses back from my first post and am looking forward to talking > more with those who responded. I am doing a lot of research but I > am still not clear on whether or not most have a positive mycoplasma > test that do the AP therapy. And what test should I ask my doc > for...the PCR? I am going to do the AP regardless but I am aware it > will be easier if I have a positive mycoplasma test? I finally > convinced my docs to test me for lyme cosidering I grew up in a high > risk area. They fought me but I won. But because of immunoglobulin > treatments the test could be false positive or negative. So, I am > trying to get together research on AP therapy in high hopes the docs > I have now will help me. Hope all is going well for everyone. > > sending you all thoughts of healing > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 The question " What does my future hold? " is one we all ask, and unfortunately, there's no clear answer. Some people with RA do very well, others have more severe problems. Don't scare yourself by dwelling on worst-case scenarios--just take each day as it comes, and make the best choices you can regarding your health. Sierra > > Okay here it goes. The dreaded question. Did you guys start out with > just a few aches and pains and gradually get to where you are now? I > just got my RF labs back a week ago that showed a high level in my > blood. I only have a few aches and pains, although they are constant > in my left thumb and left knee. I am getting a few more now in right > hip, left index finger, etc. But the pain is not horrible it just > aches and is constant. I went to the dr. because it was so constant > that I KNEW something was wrong. I immediately went searching for a > group and I will have to say, I'm a little worried about the future. > I have had a couple good days (almost pain free) and now I'm second > guessing everything. So, I was just wondering if you guys started out > kind of like me? I know it's a stupid question to ask, because who > wants to hear the answer, RIght? But I really want to know. > Thank you > Bobbi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 The question " What does my future hold? " is one we all ask, and unfortunately, there's no clear answer. Some people with RA do very well, others have more severe problems. Don't scare yourself by dwelling on worst-case scenarios--just take each day as it comes, and make the best choices you can regarding your health. Sierra > > Okay here it goes. The dreaded question. Did you guys start out with > just a few aches and pains and gradually get to where you are now? I > just got my RF labs back a week ago that showed a high level in my > blood. I only have a few aches and pains, although they are constant > in my left thumb and left knee. I am getting a few more now in right > hip, left index finger, etc. But the pain is not horrible it just > aches and is constant. I went to the dr. because it was so constant > that I KNEW something was wrong. I immediately went searching for a > group and I will have to say, I'm a little worried about the future. > I have had a couple good days (almost pain free) and now I'm second > guessing everything. So, I was just wondering if you guys started out > kind of like me? I know it's a stupid question to ask, because who > wants to hear the answer, RIght? But I really want to know. > Thank you > Bobbi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 Thank You, I am not asking anyone to guess what MY future holds. I just wondered if it was common for the symtoms to start out mild. Thanks to all for listening to me. I think I'll just wait until after my Rheumy appt. before I ask anymore questions. It's hard because I have an entire month to wait for some answers, and I'm just so ignorant of all this at this time. I swear the Unknown is driving me crazy. Bobbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 Bobbi, you realize that everyone has a different experience. Mine is different from most, I'm sure. I just awoke one morning and had sharp, constant pain all over my body, and it wouldn't go away. This was 16 years ago. I had a wonderfully knowledgeable doctor that diagnosed it immediately and proved it with blood tests. At first, aspirin would relieve most of the pain, but it got stronger as time went on. For a man working behind a desk, it was rough sitting still for any period of time, so I had to move around as much as possible. And, I rubbed my body parts a lot. Wrung my hands constantly, and constantly moving even while sitting. I'm still like that, can't sit for long and have to move around. Lately it's getting better, so I'm adjusting my meds accordingly. I'm down fom 10 mg of Prednisone to 7 1/2 mg, and I'm hoping to be off it within 2 months. Prednisone was a blessing when I first got it because it made the pain almost go away, so I didn't question it, just enjoyed it's effects. Whatever you do or take that works for you, count it as a blessing. I wish you all the luck, and the pain goes away! Dennis [ ] Question for everyone Okay here it goes. The dreaded question. Did you guys start out with just a few aches and pains and gradually get to where you are now? I just got my RF labs back a week ago that showed a high level in my blood. I only have a few aches and pains, although they are constant in my left thumb and left knee. I am getting a few more now in right hip, left index finger, etc. But the pain is not horrible it just aches and is constant. I went to the dr. because it was so constant that I KNEW something was wrong. I immediately went searching for a group and I will have to say, I'm a little worried about the future. I have had a couple good days (almost pain free) and now I'm second guessing everything. So, I was just wondering if you guys started out kind of like me? I know it's a stupid question to ask, because who wants to hear the answer, RIght? But I really want to know. Thank you Bobbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 to answer your question. with me, the pain started in my feet. would stay with me for about a week, one foot each month. the pain would switch feet each month. each time the pain came it varied, sometimes were worse than others. dealt with the pain for over a year, ( dont know why or HOW i did it ) before it took over, and was affecting almost every joint, everyday. dealt with that for about a month, before i was diagnosed. i also had high level count in my blood with the RF labs. everyone is different though. hang in there --- Bobbi <mom2triplets@...> wrote: > Okay here it goes. The dreaded question. Did you > guys start out with > just a few aches and pains and gradually get to > where you are now? I > just got my RF labs back a week ago that showed a > high level in my > blood. I only have a few aches and pains, although > they are constant > in my left thumb and left knee. I am getting a few > more now in right > hip, left index finger, etc. But the pain is not > horrible it just > aches and is constant. I went to the dr. because it > was so constant > that I KNEW something was wrong. I immediately > went searching for a > group and I will have to say, I'm a little worried > about the future. > I have had a couple good days (almost pain free) and > now I'm second > guessing everything. So, I was just wondering if > you guys started out > kind of like me? I know it's a stupid question to > ask, because who > wants to hear the answer, RIght? But I really want > to know. > Thank you > Bobbi > > > > > > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 My RA started out pretty mild. I would have pain in one joint for a day or two, and then it would move to a different joint for a day or two. It was really weird, the way it travelled around. Then, after a steroid shot for shingles that made all my pain go away for a few days, it got much, much worse and seemed to settle in my hands and shoulders. I had unbearable pain for a few months before I got the correct diagnosis and started on a DMARD. Now my RA is in decent control with Enbrel, so there is hope for the future. I hope that you have a good rheumy who will treat your RA aggressively so that damage to your joints will be held to a minimum. Good luck! Sue On Sunday, November 13, 2005, at 07:35 PM, Bobbi wrote: > Thank You, I am not asking anyone to guess what MY future holds. I > just wondered if it was common for the symtoms to start out mild. > Thanks to all for listening to me. I think I'll just wait until after > my Rheumy appt. before I ask anymore questions. It's hard because I > have an entire month to wait for some answers, and I'm just so > ignorant of all this at this time. I swear the Unknown is driving me > crazy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Hi, I believe that I did start out like you somewhat. It was kind of gradual for me and the doctors took forever to diagnose me correctly. I kept running to the orthopedist and podiatrist for all these different problems, even had some joint surgery before the diagnosis. You are lucky to get diagnosed early on and perhaps your outlook will be better because of the earlier treatment. I would be cautious about fooling myself into thinking that you do not have the disease when you have a few good days. Acceptance is a huge part of this whole process and aggressive treatment when necessary I feel also keeps us mobile longer, but everyone has a different outlook. Just enjoy and appreciate every good day you get! Tracie in Maine > > Okay here it goes. The dreaded question. Did you guys start out with > just a few aches and pains and gradually get to where you are now? I > just got my RF labs back a week ago that showed a high level in my > blood. I only have a few aches and pains, although they are constant > in my left thumb and left knee. I am getting a few more now in right > hip, left index finger, etc. But the pain is not horrible it just > aches and is constant. I went to the dr. because it was so constant > that I KNEW something was wrong. I immediately went searching for a > group and I will have to say, I'm a little worried about the future. > I have had a couple good days (almost pain free) and now I'm second > guessing everything. So, I was just wondering if you guys started out > kind of like me? I know it's a stupid question to ask, because who > wants to hear the answer, RIght? But I really want to know. > Thank you > Bobbi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Sue, Thank you. I also have problems with my shoulders. I can handle the pain in the other joints so far, but my shoulders/neck really bother me. The confusion I have though, is that the pain seems to be muscular more than joint??? There is pain in the joint, but the muscles are so tight in my neck and shoulders....it is really bothering me today. I took a muscle relaxer and some aspirin. I'm hoping the day gets better. I just can't wait until Dec. 5th to go the Rheumy. Thanks for listening Bobbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Tracie: Thank you, unfortunately I found out what you are saying last night! After two good days and thinking that maybe the dr. was wrong...the pain came back in spades last night. I just layed there and cried last night while Hubby slept. I woke up this morning and can hardly move my shoulders and neck. My back also hurts along with all my normal aches and pains. I will now learn to just enjoy the good days more! Thanks Bobbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2005 Report Share Posted November 18, 2005 Bobbi- It is scary - and even after your visit, you may still not have the answers you want. I started with pains in my knees that I finally got diagnosed at " its a female problem " - this from an ortho! That went on for about 4 months- then it started in my feet and it seemed like in one month it got to the point where I couldnt walk right. From there- it was fast- I saw a new primary doc who diagnosed it as RA last Halloween. I couldnt get into see a Rheumy til Feb and by that point- I was in a wheelchair.But as soon as I saw the rheumy and got on the right meds- I was able to deal with it. Hang in there! Jill On 11/13/05, Bobbi <mom2triplets@...> wrote: > > Thank You, I am not asking anyone to guess what MY future holds. I > just wondered if it was common for the symtoms to start out mild. > Thanks to all for listening to me. I think I'll just wait until after > my Rheumy appt. before I ask anymore questions. It's hard because I > have an entire month to wait for some answers, and I'm just so > ignorant of all this at this time. I swear the Unknown is driving me > crazy. > Bobbi > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Hi Everyone, I hope you are all well! I was curious if anyone has been through something similiar? I'll try and explain it best I can. Just remember I have ms . Prior to starting ldn I was leary. I didn't quite buy into the idea that ldn would help me. As the weeks went by I started to see changes (for the better) ocurring in my body. After awhile my doubt was replaced by hope. I could now, understand the urgency, people have here to spread the word and help others. It's like this facinating discovery that you want the whole world to know and others dealing with illness. I just wondered if anyone here has been afraid to spread the word in case it harms the person you are talking to? Also do any of you have a problem dealing with being less sick? I know that sounds crazy but never one to be shy I had to ask. I feel myself getting better but know this is not a cure. I think I have gotten use to being like I was, that anything Good or Bad, I have trouble getting use to. Or maybe its a self preserverance thing? Take Care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 , I tell all who will listen to me. In my local MS support group, I am a walking clinical study for them. Whenever we speak or meet, they are always curious as to how I'm doing. I've been on LDN now for four weeks and I am making progress with no exacerbations. I am an RRMSer. I show people how I am doing and even demonstrate some of my balance improvements. I also tell them that it is their own decision to take LDN and that they should get their Docs approval. I give them all the information that was available to me and let them make their own decision. I lend them the book "Up The Creek With A Paddle", by Bradley and let them glean from it what they want. I hope this answers your questions. Email me if you have more. Ed <pomsaregreat@...> wrote: Hi Everyone, I hope you are all well! I was curious if anyone has been through something similiar? I'll try and explain it best I can. Just remember I have ms . Prior to starting ldn I was leary. I didn't quite buy into the idea that ldn would help me. As the weeks went by I started to see changes (for the better) ocurring in my body. After awhile my doubt was replaced by hope. I could now, understand the urgency, people have here to spread the word and help others. It's like this facinating discovery that you want the whole world to know and others dealing with illness. I just wondered if anyone here has been afraid to spread the word in case it harms the person you are talking to? Also do any of you have a problem dealing with being less sick? I know that sounds crazy but never one to be shy I had to ask. I feel myself getting better but know this is not a cure. I think I have gotten use to being like I was, that anything Good or Bad, I have trouble getting use to. Or maybe its a self preserverance thing? Take Care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 I think that an actual chiropractor{or any MD OR DO for that matter} sees and hears enough everyday from people that have chronic neck and back pain. I for one would not like anyone to be able to read what I write unless they are in pain themselves and can relate to what I am going through. Just my opinion. LARRY > > Hi everyone I wanted to ask everyone and see how they felt about this > as its come up before and I'd like to know what the group thinks of > it. We recently had a dr (chiropractor) who asked to join the group. > He wanted to read about people who had lumbar back pain and neck pain. > Now I felt this would be an invansion of our privacy to have someone > read about how we all feel on a daily basis. This group IS for people > in pain Not for someone to read our posts and get info about our pain. > I didn't see how this would help him in his practice and I honestly > felt it was wrong of him to ask to even join as the membership clearly > states it is for people in pain group. But I wanted to hear from > everyone else how you felt about this, if you would want a dr reading > your posts since most of them are about our daily pain and dealing > with our lives which is personal to me. I've had this happen before > and I had the same feeling so I thought maybe I should ask the group > how you feel about someone doing ths to you??? would you want someone > reading all your posts about your pain and problems??? Please let me > know how you feel maybe I am wrong in my feelings. But my first > feeling is to protect the group. Thanks for your input. Sharon Group > Owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 I think that an actual chiropractor{or any MD OR DO for that matter} sees and hears enough everyday from people that have chronic neck and back pain. I for one would not like anyone to be able to read what I write unless they are in pain themselves and can relate to what I am going through. Just my opinion. LARRY > > Hi everyone I wanted to ask everyone and see how they felt about this > as its come up before and I'd like to know what the group thinks of > it. We recently had a dr (chiropractor) who asked to join the group. > He wanted to read about people who had lumbar back pain and neck pain. > Now I felt this would be an invansion of our privacy to have someone > read about how we all feel on a daily basis. This group IS for people > in pain Not for someone to read our posts and get info about our pain. > I didn't see how this would help him in his practice and I honestly > felt it was wrong of him to ask to even join as the membership clearly > states it is for people in pain group. But I wanted to hear from > everyone else how you felt about this, if you would want a dr reading > your posts since most of them are about our daily pain and dealing > with our lives which is personal to me. I've had this happen before > and I had the same feeling so I thought maybe I should ask the group > how you feel about someone doing ths to you??? would you want someone > reading all your posts about your pain and problems??? Please let me > know how you feel maybe I am wrong in my feelings. But my first > feeling is to protect the group. Thanks for your input. Sharon Group > Owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 One of the biggest complaints I hear here and in other groups like this is that doctors don't care and don't take the time to listen. This doctor wants to know, he wants to hear and hopefully can take what he hears here to work to help someone. If our stories and our words can motivate just one doctor to change the way he looks at and treats folks like us; what is the harm? Personally, I say let him in with the intro of who he is, why he is here, a warning for him not to drum up business for himself, promote a product and that he must state who he is in each email. It's our one chance to be heard, if not to make a difference in our lives and treatment, perhaps to help someone else. Just MHO. LunaRose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 One of the biggest complaints I hear here and in other groups like this is that doctors don't care and don't take the time to listen. This doctor wants to know, he wants to hear and hopefully can take what he hears here to work to help someone. If our stories and our words can motivate just one doctor to change the way he looks at and treats folks like us; what is the harm? Personally, I say let him in with the intro of who he is, why he is here, a warning for him not to drum up business for himself, promote a product and that he must state who he is in each email. It's our one chance to be heard, if not to make a difference in our lives and treatment, perhaps to help someone else. Just MHO. LunaRose Quote Link to comment Share on other sites More sharing options...
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