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Old 06-10-2007, 09:58 PM   #1
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I just need someone to understand

Hi I am 28 and I am having a down spell when it comes to dealing with the fact that I may have lupus. The reason is this. I have had a bad year when it comes to feeling bad. I have been extremely fatigued. I have had major flares of chest pain. I have just felt fluish so many times (oh but never actually have it or anything wrong with me for that matter). I am the migraine queen. Did I mention I am the queen of mouth sores as well? Only to visit the doctor and find out that I feel so bad and can't get of bed, but there is absolutely nothing wrong with me and every test comes back negative. Do you know how embarrasing that is? I mean I feel like a total hypochondriac. I went to the urgent treatment center and because they could see the sores and blisters in my mouth they knew I was miserable, but if those wouldn't have been there, I would have been an idiot because all the test were negative.


Anyway, my point is no one understands. When you are not diagnosed with Lupus from your Rheumatologist then your family doctor don't understand why you are there so much. And when you call your Rheumatologist's office about other things the office says that she doesn't treat those things. It is a no win situation. When I actually get in to see my rheumatolgoist she is great, but it is getting through to her that is the trouble. I feel like I am stuck between a rock and a hard place right now because I am not diagnosed with lupus, but at the same time I don't want to be diagnosed with Lupus. It just seems like if I were diagnosed with it then I would have an explanation for everything that I feel and go through and people wouldn't think I am crazy, lazy, or an hypochondriac. My life is very blessed and my family and friends understand, or at least some do , but I just need to vent and I need more people to understand and listen to me.

Last edited by aspen26; 06-10-2007 at 09:59 PM.

 
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Old 06-11-2007, 06:08 AM   #2
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Re: I just need someone to understand

Aspen,
I can see why you are so frustrated. I'm sorry you are feeling so poorly physically and emotionally right now. Just because the tests are negative now doesn't mean it's all in your head. A lot of the time, Lupus develops slowly, causing a variety of symptoms over a period of years before it finally produces positive test results. Hang in there! I believe you when you say you hurt and don't feel well, I also know what migraines are like. Take care

 
Old 06-11-2007, 11:32 AM   #3
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Re: I just need someone to understand

I think most of us understand and empathize with your frustration. It took almost 3 years to get my diagnosis. At one point I thought I would have to die and have an autopsy to prove I wasnt crazy and have "I told you I was sick" put on my grave stone!. or go broke from CoPay hell!.. When I finally did get the diagnosis, I was actually relieved! Sad but true. Since not having a name to it didn't make the symptoms go away, only added frustration. It is a progressive disease and unfortunately in most cases the symptoms get pretty harsh before the bloodwork catches up. My ANA stayed negative for quite a while but I had other antibodies (RO-SSA) that showed positive. The ANA didnt show till last year. I didnt have the "classic" malar rash and really didnt have the skin manifestations till recently when I decided like a fool to stop taking my prednisone and then whoa... boy did I see the flare. Up till then my flares were always swelling and pain...you know the symptoms that you cant point at and say "see". Even with all that has gone on, I don't think it really all sank in till I went off the prednisone and saw in full force what my lupus would look like had I not been taking the prednisone for the last 3 years. I still have the mild rash but nothing compared to what I look like off of it.

Hang in there and keep a log of your symptoms. When you get a rash, take a picture of it so you can show it to your rheumi and dermitologist.

We all know that it is hard when you have no name to call it. People that have not been through this really never get why in the world we would want to have a name attached to our problem. But unfortunately it is so hard when you are feeling like crap and someone asks what you have and all you can say is --I dont know, or "nothing on paper" but meanwhile you cant get out of bed!

Erin
Dallas TX

 
Old 06-11-2007, 02:17 PM   #4
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c57s53 HB User
Re: I just need someone to understand

Hi Erin,
I was diagnosed with SLE about 6 years ago, and I honestly did not know that Lupus was a progressive disease, just that it would go into remission from time to time and flare up from time to time. I always know when I am going into a flare as I get the same symptoms with others added into the mix so it can sometimes leave me saying "Well, is this a flare or not?" My malar rash on my cheeks and bridge of my nose is so red sometimes that it actually almost looks purple and on any given day, no matter if I'm in a flare or not, it never goes away. I have tried all kinds of make-up to cover it up and believe me when I say, NOTHING helps!!!!! I have spent as much as several hundred dollars on make-up to no avail. In fact, at this point in time, i can barely wair makeup without having my face itch so it isn't even worth it anymore. So, this is progressive?

Thanks,
Connie

 
Old 06-11-2007, 03:45 PM   #5
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Re: I just need someone to understand

Dear Aspen, Hi. A lot of us here truly understand the dilemma. My story is similar to Erin's: negative ANA, loads of episodic problems including rashes, positive anti-Ro---and no dr. willing to make any call or prescribe anything for symptoms. Very frustrating!

Here are a few things you could perhaps do:
1. Get copies of ALL your tests. Review to see exactly WHAT you've been etsted for. Hopefully you'll find that your dr. has run antibody tests BEYOND the basic ANA. Look for specific antibody tests. Also look for any abnormalities on the standard blood panels.
2. Review the "sticky posts" at the top of the Board, which contain symptoms & criteria for lupus & for antiphospholipid syndrome (APS). APS is a clotting disorder seen often with lupus, or existing "standalone". You mention migraines, which are common in APS as well as in other things, presumably.
3. Try some of the hardcovers. Two great authors come to mind: Dr. Daniel Wallace &/or Dr. Robert Lahita. These books are in most libraries & bookstores.
4. Hopefully, out of your reviewing & reading, you'll come up with very specific questions for your rheumie.

Has your dr. given you any medication at all? Years back, I had a spate of migraines and took Bellergal. It knocked me out, but that was a blessing!

I hope you keep posting & can gain some ideas that will help you get more clarity. Bye for now, with best wishes, Vee

 
Old 06-11-2007, 06:41 PM   #6
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Re: I just need someone to understand

Quote:
Originally Posted by c57s53 View Post
Hi Erin,
I was diagnosed with SLE about 6 years ago, and I honestly did not know that Lupus was a progressive disease, just that it would go into remission from time to time and flare up from time to time. I always know when I am going into a flare as I get the same symptoms with others added into the mix so it can sometimes leave me saying "Well, is this a flare or not?" My malar rash on my cheeks and bridge of my nose is so red sometimes that it actually almost looks purple and on any given day, no matter if I'm in a flare or not, it never goes away. I have tried all kinds of make-up to cover it up and believe me when I say, NOTHING helps!!!!! I have spent as much as several hundred dollars on make-up to no avail. In fact, at this point in time, i can barely wair makeup without having my face itch so it isn't even worth it anymore. So, this is progressive?

Thanks,
Connie

Connie,

From everything I have read it is progressive and evolving. Every time you have a flare it will do damage. It will also attack new places (as you said, new things thrown into the mix). Vee is a wealth of information. She reads alot of books. I keep thinking I need to get me one of those books she is always talking about! Most of my info comes from the internet. You know how it is, you get something weird and you look it up.

My perminant rash is on my chin and neck. But like I said in my post earlier, when I came of the prednisone (been on it for 3 years every day - the highest maintanence dose was 60 but now 30 and hopefully back to 20 soon) I broke out horribly on my face, neck and chest. My chin turns almost purple like you malar rash as soon as they drop my prednisone dose down. I am taking methotrexate and had hoped to be able to get off it completely, but it doesn't appear to be possible right now.

Good thing we progress and evolve too huh!!!

Erin
Dallas TX (really not looking forward to this summer!)

 
Old 06-12-2007, 04:43 AM   #7
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Re: I just need someone to understand

Aspen, I don't have a diagnosis of lupus, but I wanted to let you know that I understand! Boy do I understand. I am also stuck in this "diagnosis limbo" - knowing something is wrong with me, knowing I have symptoms of lupus, as well as a history of lupus and other autoimmune disease in BOTH of my parents' families, but yet not able to get a name to what's going on, because of negative bloodwork. It's weird, because I either currently have or have had many of the symptoms you mentioned - migraine history, chest pain and inflammation, mouth sores. I also have joint and muscle aches and attacks of pain, EXTREME fatigue, brain "fogs", increased headaches and possible other mild neurological stuff (I think I had a mild seizure a few days ago and may possibly have mild seizures in my sleep), mild acne-like, spotty, bumpy skin across my cheeks, nose and middle of my forehead, and to top it off - most of my symptoms (especially the fatigue and joint/muscle aches and pains) ALWAYS get worse after any kind of sunlight and possible heat exposure. I have become VERY sensitive to the sun over the past several months. I was recently referred by my regular doc to a rheumatologist, because I have had 2 inflammation "attacks" of pain recently (one in December, latest in April) and an elevated sedimentation rate both times, which is a general indicator of inflammation. But I learned you don't even have a hope of getting any respect without obvious physical signs and a positive ANA - because I DO have positive bloodwork (the sed rate), but it's not "significant enough" to indicate a possible rheumatic disease. This is directly from my
rheumatologist's mouth - yet in the next breath he tells me the only condition he's seen sun sensitivity causing aches and pains in is lupus. So.....even WITH abnormal bloodwork, if it's not the "right" bloodwork or "significantly abnormal", you still end up feeling like you are crazy. The only positive bloodwork I have, the only thing I have to hold on to, and the rheumy said he's "not concerned" about it - just wonderful. I also saw an allergist recently who confirmed I have a ton of outdoor and indoor allergies, many I didn't even know I had, yet he also said I do NOT have an allergic "sun allergy", because a sun allergy would likely cause hives rather than aches and pains, and he said "something else is going on with you". But what?

I'm about 2 1/2 months into my latest "attack" and it has been pure hell because I work full time and NO ONE really understands. It's so hard to find ANYONE who understands how hard it is to have something wrong with you, that affects your everyday life, that drains the life out of you, that makes it hard to do some of the things you used to do without problems before your latest "attack" - yet you don't even have a name for it. I taught myself how to knit about 1 1/2 years ago, got some of my co-workers into it, and I used to be able to knit for hours without difficulty. Yet now I can only knit for 30 minutes, MAX, on a GOOD day before it causes fatigue and/or pain. I've had to miss a lot of work recently, and just yesterday one of my co-workers asked me "so, have you done any good knitting lately while you've been sitting around?" What?! I have NOT just been "sitting around", lounging at home as if I'm on a leisurely vacation! Unbelieveable. And I know she didn't mean to be offensive, it just shows you how most people, caring though they may be, just do NOT understand. But trust me, I understand you more than you could ever believe!

I am now at the point that I don't even care if a doctor even gives me a formal diagnosis of lupus, or any other autoimmune disease. I just want to find SOMEBODY with the guts to tell me, you could very well be at the EARLY STAGES of an autoimmune disease, so we're going to put you on a low-dose course of treatment, and who knows, maybe even slow down or prevent a severe course of this disease. Everyone says you can't "prevent" these conditions, but you have to wonder if some of us got taken seriously while we're in limbo-land if they really could. I was prescribed Predinisone for about a week with my attack last December, and while I swore I would never go on it again because of side effects (a weakened immune system is NOT good when you work with different young children each day during cold and flu season!), at least it got rid of my pain VERY well and VERY quickly. I just wish I had a doc who had the guts to try something for me, other than changing my antidepressant and giving me sleeping pills, which only make me feel worse.

Sorry this is so long, but I really want you do know that I DO understand, because I am right where you are now. So I don't have any advice about getting a diagnosis, since I'm not there yet, but I can tell you what I'm doing: I am currently trying to see every specialist I can think of, for each of my individual symptoms. I'm writing down how I'm feeling each day, along with any possible environmental triggers, since the severity of my symptoms can vary. And at my follow-up with either my regular doc or the rheumy, I'm going to ask for a referral to a specialist in the rheumatology, immunology and allergy department at a teaching hospital about an hour from me, that has MANY docs who specialize in lupus as well as in general autoimmune disease and fibromyalgia, with the hopes that they can just maybe either figure out what is going on, or treat me as a person at the early stage of an autoimmune disease, ANY autoimmune disease. I know what it's like to feel like you'll never get an answer, but I have to hope that maybe someday I'll find that right doctor who will take me seriously, even though my bloodwork does not show any "clinically significant" form of a disease. My regular doc knows something is wrong with me, just doesn't know what, so that at least helps to have someone in your corner. And my husband is VERY supportive, which is good.

Please keep talking. I hate you are going through this now, but it sounds like a lot of people have either been where you are or a currently there - like me. So it has been comforting for me to know that I am not alone. Take care.

 
Old 06-12-2007, 06:50 AM   #8
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Re: I just need someone to understand

Well at least yoru regular doctor understands and you have a good husband. I don't have a husband nor do I date much. I am so afraid that someone would think I am lazy or faking. My rheumatologists does understand, but she says the insurance company would flip out if she made that diagnosis without more positive blood work. What I wanted to tell you is is she really is tyring to persuade me to take plaquenil but I won't. She does seem to think it would stop my symptoms in their tracks. I am not brave enough to take it because I am currently taking migraine prevention medicine, thyroid medicine, and mobic an anti inflammatory. that is enough. She is a strong believer that plaquinil would help keep lupus ( if I do have it)from getting worse). She thinks even if I don''t have lupus that whatesver I do have it would help. She said since prednisone works so well for me so quickly then plaquenil would most likely help too. Maybe you could mention that to your doctor. I have heard people say that it has given their their life back to them. I am just not brave enough to take it. I feel like I should have a dianosis of lupus before I take it, but maybe that is stupid because if it could help us then we should just take it. You have to get your eyes checked for pressure or something prior to taking it and every six months but those affects are rare, but should be taken serious. I think it helps a lot of people with lupus feel better. All I know is that I refuse to be on steroids on a regular basis. I take a medrol dose pack when I have the chest pain flares. I only take about three days worth out of the 7 days worth and then I save the rest for another flare. It helps and I don't have the unwanted symptoms. I guess I should be thankful that my symptoms are what they are and are not worse. I have to remind myself that some people are in the hospital with body organ involvment and that my condition whatever I have could be so much worse. It is so hard this stuff is. It makes you feel so crazy and doctors just simply don't understand. I know that my doctor because I have had three family doctors in the past two years will they probably think I am a crazy loon. I only changed my doctor once because of that and the second one moved to anothe county so I had to change again. The third one well I am trying not to go very often and just tough things out so she don't think I am crazy. Isn't that sad? I was going to tell you that I was on topamax for migraines. It helps me so much. I tried to go off of it and I was okay for a while but they come back and I had to go back on it. topamax helps me live. I only take 75 mg. I am able to function without bad side affects.

 
Old 06-12-2007, 06:57 AM   #9
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Re: I just need someone to understand

I just want to say thanks to all of you who replied. These responses have been therapy for me.

 
Old 06-13-2007, 07:17 AM   #10
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Re: I just need someone to understand

Aspen, thanks for the info about plaquenil. I didn't think anyone ever got that as a recommendation without a clear lupus diagnosis. Unfortunately, I'm pretty sure the current rheumatologist I'm seeing would never prescribe that to me, because I don't think he really feels like there is anything wrong with me, since he doesn't consider my bloodwork significantly abnormal. From looking at the patients I saw in his practice, he probably specializes in people with severe, debilitating arthritis conditions - and since I can walk and didn't scream in agony during the physical exam, I'm sure he's ready to just be done with me. But I guess I can't be too mad at him, because he's the one who actually suggested I get a second opinion at a university hospital - so even he realizes he's probably not the best person to either figure me out or treat me.

I do understand what you mean about wanting a diagnosis yet being terrified of a diagnosis. I'm also 28, and my mom (who has also had lupus symptoms but never severe enough to get a diagnosis) is kinda pressuring me to not get a diagnosis, because she's worried about how it would affect getting medical coverage in the future. But the irony is that I work for a state agency, and I will ALWAYS have coverage while I work here, but the longer I keep going at this rate, with no diagnosis and no real treatment, the less likely I will be able to do stay in my job. So what do you do? My mom was able to retire early when she got sick with her unknown illness, but I'm nowhere near retirement. I think that's why I'm still kinda hoping I can find a doctor who has the guts to treat me with a very lose dose of steroids, and maybe a very low dose of the med you mentioned, with the hopes that maybe I can at least feel well enough so I can at least get my job responsibilities more under control. I really don't like the idea of being on steroids long term either, but it sounds like you're not, so maybe there are lots of options out there. It does make me feel better to know that your rheumatologist is willing to try to treat you, even if you don't like the idea of taking the meds. I know I would probably feel exactly the same way, too, because these are serious drugs. It's just I have an occasionally demanding job, that I love and want to keep and I HAVE to keep financially - my husband has 2 more years of school and we're in the process of trying to foster/adopt children. For me something has to give, and I love my family and my job too much to have to give that up in the near future if I keep going on like this indefinitely without treatment.

I don't want to take these things either, I don't really want a diagnosis of lupus - another thing people often don't understand! I don't keep coming back to lupus because I want to be labeled with this chronic disease. I just want some treatment to get my quality of life back and it seems like I need a diagnosis of SOMETHING for that. Or at least knowledeable doctor who can take your symptoms seriously. It just makes your head spin. I do thank you for telling me more about yourself - everyone's stories have been very helpful for me as well.

 
Old 06-14-2007, 06:10 PM   #11
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Re: I just need someone to understand

I am a school teacher, This year will be my sixth year. I am working on my rank I as well. My school is in trouble for test scores so I am literally there till at least five or sometimes seven many many nights. We are forced to do a lot of paper work and get three times as many PD hours as others teachers. Classes keep me busy on the weekends and I still have work from school to take home. Who ever said life as a teacher was easy? I guess if you work at a school that is not in trouble for test scores it would not be like that. We have the best school and best teachers ever. We do more and work harder than anybody, but sometimes things just happen. I love my job though. I think a lot of my flares happen as a result to stress. My career is important to me and like you I must work. I have lived at home with mom cause she wouldn't have had it any other way, but now I recently bought a condo and will be on my own soon. I am not married and have no kids so that makes things easier I guess. All of the energy that would go to them just goes to my job. I am, I admit a workaholic haha.

 
Old 06-15-2007, 03:06 AM   #12
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Re: I just need someone to understand

Hi, Aspen. I just reread the entire thread & want to add something about the stress thing... Realisticchic said, towards the beginning of the thread, that lupus can develop slowly. Mine certainly did, with new "add-ons" every few years. Not knowing any better, I blamed stress, which is akin to blaming yourself. I'm SO ANNOYED that I wasn't able to figure things out earlier.

In contrast, YOU know that lupus is a possibility. So if your symptoms persist &/or broaden, I hope you just keep trying. Not all rheumatologists or dermatologists are created equal; so if you strike out, I hope you try others, if conditions warrant, OK?

Thinking of you & sending my best wishes, Vee

 
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