Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 Meghan I think you are totally on track, the feeling like having a fever without a fever gee I have been complaining about that one for many years. You are the first one that has ever said that. Makes me feel better! Hugs Fran Introduction Hi everyone,I'm not sure if I belong on this group but I thought I'd give it a shot.In early 1999, I was about to move out of state and noticed a small bump on my leg. Three weeks later, when I finally got to a walk-in clinic in the new state (WA) the bump was several cm in diameter and was starting to separate into three distinct bumps. I had swelling in my legs too. I was diagnosed with cellulitis and given antibiotics. And then another course of a different antibiotic. And then an injection of an antibiotic, and another oral one. All this despite the fact that I had never had a fever this whole time... eventually I got bumps on my other leg. I spent the good part of a month with my legs elevated and a heating pad wrapped around the bumps. Now, I've actually had cellulitis from a cat bite and this didn't fit the profile, so I started doing some digging. I finally posted to sci.med venting my frustration at being given antibiotics when I wasn't even sure I actually had cellulitus. A physician's assistant asked if anyone had mentioned erythema nodosum?I dug some more, looked at some pictures, and the light bulb went off. I made an appointment with a completely new doctor (the fourth at this point), and asked her what she thought. She called in another doctor to consult, and he agreed that yes, it probably was E.N. Of course they had no idea how to cure it.. I said apparently it's often caused by birth control pills and they said to stop them and see what happened (why exactly IS my insurance paying all of these people when they should be paying me? lol).I stopped the pills, the E.N. cleared up. Great. Eight months later I was pregnant. Within a week or two of having my son, I got a small nodule on my foot and felt achy, but the nodule went away. Phew! 9 months later I miscarried a 10-week pregnancy and got another nodule on my knee plus achiness. It also cleared up. Another pregnancy, another baby, and I had a small nodule but it cleared up quickly. Those are the only bumps I've had.BUT... I still get the achiness and malaise; it feels just like the E.N. did but without bumps. I know it's hormonal, that's obvious. I wish I had been keeping a log of when I get it so I could try to see the pattern. I signed on here today because I ovulated yesterday or the day before and was feeling great - today I just want to crawl into bed until the achiness goes away. I just realized today that I bet all those times I've felt like this were linked to certain points in my cycle, with bumps appearing when a major event like childbirth or miscarriage happened (the hormone crash is pretty significant). So anyway, as I said I don't know if I really belong here because I have no bumps and don't know for sure if this is all related. I have to assume it is. I'm grateful I don't have it as bad as I did that first time and I really feel for everybody who has to live with it daily.. it's awful stuff. The bumps, painful as they were, were a lot easier to deal with than this freaking debilitating fatigue and achiness. It's like having a fever with no temperature.Is this typical of E.N.? Or am I completely on the wrong track?Thanks for reading if you got this far..Meghan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 Hi Meghan, I don't think that you are off track...... I have been trying to bring this to the attention of my dr's most times I feel they just blow me off.. My En used to run with my cycles... now it is chronic.. If I may, I would like to print this out and show it to my dr.... and if there are others that maybe fall into this area of EN ... maybe I can take a tally and present that as well.... have a great night > >Reply-To: erythema_nodosum_Group >To: erythema_nodosum_Group >Subject: Introduction >Date: Fri, 14 Nov 2003 02:03:25 -0000 > >Hi everyone, > >I'm not sure if I belong on this group but I thought I'd give it a >shot. > >In early 1999, I was about to move out of state and noticed a small >bump on my leg. Three weeks later, when I finally got to a walk-in >clinic in the new state (WA) the bump was several cm in diameter and >was starting to separate into three distinct bumps. I had swelling >in my legs too. I was diagnosed with cellulitis and given >antibiotics. And then another course of a different antibiotic. And >then an injection of an antibiotic, and another oral one. All this >despite the fact that I had never had a fever this whole time... >eventually I got bumps on my other leg. I spent the good part of a >month with my legs elevated and a heating pad wrapped around the >bumps. > >Now, I've actually had cellulitis from a cat bite and this didn't fit >the profile, so I started doing some digging. I finally posted to >sci.med venting my frustration at being given antibiotics when I >wasn't even sure I actually had cellulitus. A physician's assistant >asked if anyone had mentioned erythema nodosum? > >I dug some more, looked at some pictures, and the light bulb went >off. I made an appointment with a completely new doctor (the fourth >at this point), and asked her what she thought. She called in >another doctor to consult, and he agreed that yes, it probably was >E.N. Of course they had no idea how to cure it.. I said apparently >it's often caused by birth control pills and they said to stop them >and see what happened (why exactly IS my insurance paying all of >these people when they should be paying me? lol). > >I stopped the pills, the E.N. cleared up. Great. Eight months later >I was pregnant. Within a week or two of having my son, I got a small >nodule on my foot and felt achy, but the nodule went away. Phew! 9 >months later I miscarried a 10-week pregnancy and got another nodule >on my knee plus achiness. It also cleared up. Another pregnancy, >another baby, and I had a small nodule but it cleared up quickly. >Those are the only bumps I've had. > >BUT... I still get the achiness and malaise; it feels just like the >E.N. did but without bumps. I know it's hormonal, that's obvious. I >wish I had been keeping a log of when I get it so I could try to see >the pattern. I signed on here today because I ovulated yesterday or >the day before and was feeling great - today I just want to crawl >into bed until the achiness goes away. I just realized today that I >bet all those times I've felt like this were linked to certain points >in my cycle, with bumps appearing when a major event like childbirth >or miscarriage happened (the hormone crash is pretty significant). > >So anyway, as I said I don't know if I really belong here because I >have no bumps and don't know for sure if this is all related. I have >to assume it is. I'm grateful I don't have it as bad as I did that >first time and I really feel for everybody who has to live with it >daily.. it's awful stuff. The bumps, painful as they were, were a >lot easier to deal with than this freaking debilitating fatigue and >achiness. It's like having a fever with no temperature. > >Is this typical of E.N.? Or am I completely on the wrong track? > >Thanks for reading if you got this far.. > >Meghan > _________________________________________________________________ Crave some Miles or Grateful Dead? Your old favorites are always playing on MSN Radio Plus. Trial month free! http://join.msn.com/?page=offers/premiumradio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 Meghan, EN is one manifestation of sarcoidosis, which can cause horrible fatigue. That's my major problem, with heart, lung, eye, and skin involvement. It's not a disease they think of early on, so mention it. Early tests include blood work and chest x-rays. Do you experience shortness of breath? Depending on what the x-ray shows, there are a couple lung tests to take. Do you have vision problems---floaters, sensitivity, redness, pain? Those are eye symptoms. Do you have heart palpitations? That's a heart symptom. I've had one major nodule in my eyelid, which was as big as my thumb and required surgery. I've had smaller nodules on my lids, which just melted away after a couple Remicade treatments. Sarcoidosis can affect the brain, central nervous system, liver, kidneys, reproductive organs, just about anything. It's symptom are varied, between organs involved, and often very different from person to person. I'm involved with a support group in Indy. Check out our web page at www.indysarcoid.org. It doesn't have all the answers, but it's a good starting point for someone who hasn't heard of sarcoidosis before. Most of us haven't until we're actually diagnosed with it. On the whole scale of my particular illness, the EN symptoms have been minor compared to many in this group, but I've learned a lot from the different groups. If I can be of assistance, please let me know. Kay Pullen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Welcome, Christie, to our group. Your questions are our questions as well. 25 years is a long time to be sick and to have no ideas as to how, why and what is this all about. And the big one, how can I get this ³monkey off my back². I find that on-line groups or face to face meetings with other sufferers is helpful. I find reading on line very informative and many times hopeful that help is just around the corner. My favorite site is²http://www.immunesupport.com/² but there are other informative sites. As I write The Foundation on HHV6 ( http://www.hhv-6foundation.org/index.html/) is having a conference on the many ways HHV6 may have invaded and destroyed many lives, including CFIDS. Following this conference there is another satellite conference on CFIDS and viruses.( http://journals.aol.com/kmc528/Lifeasweknowit/entries/2008/05/27/conference- viruses-in-cfs/2058). I have had CFIDS for 8 years and have been asking the same questions. I did go to the FFC (Fibro and Fatigue Center) in Boston for a year which was very helpful. Right before their closed their doors I was put on Valtrex, an antiviral drug) for 4 months and did very well with it. No cure but improved energy. When I asked my PCP for a prescription for Valtrex he said absolutely ³NO² No is his favorite word. Dr Montoya, from Stanford, will be presenting his results of a double blind study treating CFIDS with Valcyte, an anti-viral medication. I have heard great things about the FFC center in King of Prussia which is, I think, driving distance for you. It is expensive but worth a few visits. In the Boston area we paid for the doctor visits but our insurance paid for the labs. I have even thought about the 8 hr drive to visit their office. Stay turned and positive, things are happening. Cheers Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Hi & Welcome Antoinette Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 > > Hello Everyone, > > I am new to this group and hope to have the energy to participate > often. I am in the process of trying to find a doctor in my area that > knows a thing or two about CFS. (I'm in burg PA if you know of > anyone.) I seem to fit the profile of CFS with all the symptoms but > mainly constant exhaustion and frequent illnesses. I have been sick > like this for 25 years and cycle in and out of motivation to track > down a diagnosis. CFS is relitively new to me so any input/chats with > others like me would be wonderful. > > I hope that even if someday I can't find a cure at least I will know > what is causing me to feel this way. I want to know why I can't stay > healthy long enough to hold a job, why I can't find the energy to > keep up with my family, and finally put a name to this face that has > overtaken my life. > > I would love to meet some new friends that are living a life like > mine in hopes of gaining some inspiration and motivation to keep up > this persuit. > > Nice to meet you all, > Christie > Hi Christie, welcome to the group! There are many people here who have alot of experience in coping with this illness, so pick their brains. I live in Australia, so can not give any useful info on finding a doctor in your area, but I do wish you good luck in your search. Many of us have had bad experiences with some doctors, so don't be scared of looking until you find a good one. It really does make all the difference if you can find someone who is understanding, and doesn't blame the patient. Hope you enjoy it here, and don't be afraid to vent, if you need it, and ask lots of questions! take care, ness. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 Hi Christie, Welcome to the group. August 15th will be my 19 year anniversary with cfs/fm/mcs. I know of two online doctor lists. Fibro Betsy http://www.sover.net/~devstar/list7.htm#PA Co-Cure http://www.co-cure.org/USA_PA.htm Any questions ask, I'm not shy. Take care of you. Big gentle huggles, Di in Feasterville-Trevose, PA ) dimntd on AIM, IRC, ICQ & Yahoo! Messenger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 Hi Christie, My name is and I don't live too far from you.....Lebanon, Pa. There is a doctor near you in Mechanicsburg..... M. Sullivan M.D., 1001 South Market Street, Mechanicsburg, PA 17055, ......he is recommended on the " good dr list " ....www.co-cure.org. Would like to have the opportunity to talk to you more since we live very close to each other so please feel free to email me directly " tienocherokee@... " . Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.