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Old 10-20-2009, 04:37 PM   #1
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Curious? Lupus?

I never really put all my symptoms together or even thought they could really be related but since there are some things in my family, like my cousin having lupus, my grandma had diabetes etc, my mom has been urging me for awhile to check ask the dr. Most of my symptoms have been going on for at least a couple years if not longer, hard to remember when they started.

Fatigue. I'm tired all the time no matter how much sleep I get. Discomfort in my (mostly) upper back that goes into my ribs(usually right) I just had a u/s on that to check my gall bladder etc. and the results came back normal..headaches, nausea-comes and goes, bruise easily, shortness of breath and faintness. Some chest pain-off and on, I had a cardio u/s done awhile ago which appeared to be normal as well. Every now and than my legs will start cramping so bad it would send me to the Er(I take birth control) so I want to make sure I'm ok(aunt has a blood clotting disorder) but all they say is low potassium. I have the "butterfly"(don't want to be quick to call it that) rash that goes out onto my checks, it's faint but it's there. Most recent has jaw pain(could be due to a cavity though and the fact that I recently started clinching my jaw). This is pretty much the jist of it besides a couple others that might pop up here and there or I may not really give notice too. Could all of this really be related to each other? I figured it was the normal body aches and pains and I feel silly going to the Dr with a big ole list like this. Just wanted some thoughts. Thanks. I forgot to add(sorry so long) that whenever I eat something real sugary my face also gets tingly and cold. Oh and I never really thought much about it but my left knee gets sore pretty easily. Sorry for rambling thanks.

Last edited by ashly744; 10-20-2009 at 04:39 PM.

 
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Old 10-21-2009, 04:25 AM   #2
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Re: Curious? Lupus?

Ashly, hi. Have you read the "stickies" at top of the thread list?

You mention having a cardio ultrasound & also finding your potassium is low. Does this mean you're under the regular care of a single doctor? I think continuity & having one professional "in charge" are especially important when you have varied problems & they're on/off. Someone needs to see you as a whole. And does your dr. know your family history & your own lifetime medical history? Have you ever discussed with him seeing a rheumatologist?

I saw so many GP's & specialists over decades/ I needed a good "point man" & didn't even realize it. So I hope you ask your dr. if he/she has at least considered the possibility of a single cause for your issues. Keep us posted, OK? Bye for now & sending best wishes, Vee

P.S. I also had low potassium episodically, possibly due to awful chronic GI problems. Also racing heart & tingling, maybe due to anemia. Torso/arm rashes, pain, fatigue, erratic periods, urinary problems, etc. My problems went way back to childhood, actually. Only one GP I saw over decades recognized some of these as early markers. I finally went to a big-city rheumatologist, which I wish I'd done years earlier. Meaning---you're a whole lot smarter than I was.

 
Old 10-21-2009, 07:15 AM   #3
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Re: Curious? Lupus?

Quote:
Originally Posted by VeeJ View Post
Ashly, hi. Have you read the "stickies" at top of the thread list?

You mention having a cardio ultrasound & also finding your potassium is low. Does this mean you're under the regular care of a single doctor? I think continuity & having one professional "in charge" are especially important when you have varied problems & they're on/off. Someone needs to see you as a whole. And does your dr. know your family history & your own lifetime medical history? Have you ever discussed with him seeing a rheumatologist?

I saw so many GP's & specialists over decades/ I needed a good "point man" & didn't even realize it. So I hope you ask your dr. if he/she has at least considered the possibility of a single cause for your issues. Keep us posted, OK? Bye for now & sending best wishes, Vee

P.S. I also had low potassium episodically, possibly due to awful chronic GI problems. Also racing heart & tingling, maybe due to anemia. Torso/arm rashes, pain, fatigue, erratic periods, urinary problems, etc. My problems went way back to childhood, actually. Only one GP I saw over decades recognized some of these as early markers. I finally went to a big-city rheumatologist, which I wish I'd done years earlier. Meaning---you're a whole lot smarter than I was.
Hello. Thank you for the reply. With my old DR I was sent to the carido, just to make sure everything was okay, with the chest pains, on and off palpitations and just for the fact that there has been heart stuff in my family. With the potassium, I was told that twice at the ER. I had really bad leg cramps that made me extremely uncomfortable and hurt, sine being on the pill I wanted to be safe, both times it came back as low potassium. I just got my health insurance back and was assigned a new doctor, so I decided to try him out-he handled my rib pain and abdomen ultrasound. I have not brought up my symptoms yet, I figured he would think I was nuts since I was just in there. I'm also considering going back to my old doctor, whom I've been to since I was a kid. (even tho I'm not sure I like him) he has all my medical info over the years-he is unaware of all these symptoms as well, I always brushed them off but am now wondering and I should continue to do so.

Thank you for help.

 
Old 10-21-2009, 08:41 AM   #4
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Re: Curious? Lupus?

Quote:
Originally Posted by VeeJ View Post
Ashly, hi. Have you read the "stickies" at top of the thread list?

You mention having a cardio ultrasound & also finding your potassium is low. Does this mean you're under the regular care of a single doctor? I think continuity & having one professional "in charge" are especially important when you have varied problems & they're on/off. Someone needs to see you as a whole. And does your dr. know your family history & your own lifetime medical history? Have you ever discussed with him seeing a rheumatologist?

I saw so many GP's & specialists over decades/ I needed a good "point man" & didn't even realize it. So I hope you ask your dr. if he/she has at least considered the possibility of a single cause for your issues. Keep us posted, OK? Bye for now & sending best wishes, Vee

P.S. I also had low potassium episodically, possibly due to awful chronic GI problems. Also racing heart & tingling, maybe due to anemia. Torso/arm rashes, pain, fatigue, erratic periods, urinary problems, etc. My problems went way back to childhood, actually. Only one GP I saw over decades recognized some of these as early markers. I finally went to a big-city rheumatologist, which I wish I'd done years earlier. Meaning---you're a whole lot smarter than I was.

I just saw the stickies. Thanks.

 
Old 10-21-2009, 08:49 AM   #5
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Re: Curious? Lupus?

Ashly, do you have any feel yet for your new dr. It's only YOUR sense that really counts, but his being willing to send you for the u/s test seems like a good sign? But I don't think you could possibly know if he'll find you "nuts" when he hears your symptoms, since you haven't shared them yet!

Did new dr. review the ER findings about low potassium & discuss possible reasons with you? (Whether & how well dr. discusses findings is an important thing for you to find out.)

Almost all of my local drs. treated me like a head case, which I've never been. I grew so sick of it that I dreaded seeing new drs., which actually would have been my #1 best move. Don't be afraid to try, OK? Bye, Vee

 
Old 10-21-2009, 09:02 AM   #6
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Re: Curious? Lupus?

Quote:
Originally Posted by VeeJ View Post
Ashly, do you have any feel yet for your new dr. It's only YOUR sense that really counts, but his being willing to send you for the u/s test seems like a good sign? But I don't think you could possibly know if he'll find you "nuts" when he hears your symptoms, since you haven't shared them yet!

Did new dr. review the ER findings about low potassium & discuss possible reasons with you? (Whether & how well dr. discusses findings is an important thing for you to find out.)

Almost all of my local drs. treated me like a head case, which I've never been. I grew so sick of it that I dreaded seeing new drs., which actually would have been my #1 best move. Don't be afraid to try, OK? Bye, Vee
No. I just saw him for the first time last week due to the rib pain and abdomen tenderness I was having. Since it was my first time there he hasn't seen my old medical records from the er or my other doctors. I went to see him, he kinda skimmed my family's history-I'm assuming since he asked about one of my aunts and than he asked what was up, felt my abdomen, wanted to wait on blood tests because he wanted to send me to get a u/s. He was pretty certain it was my gallbladder. But when I called the lady said they came back fine(the results). He seemed kinda impatient, didn't spend a lot of time looking at me, he seemed almost rushed, but he did get straight to the point. My old doctor, there's many doctors in the practice, so it gets very busy, it's actually been awhile since I had a real "physical" (not counting a woman's well check, I still have those regularly). I'm just contemplating on who I want to see about this, cause I don't want them to think I'm nuts or brush me off either. It's been going on for so long now, that I probably shouldn't ignore it anymore. I just don't know what symptoms are really of relevance. Anyways, sorry, I tend to ramble. I guess I feel like with a big ole long list like that, that might just figure its all in my head. Idk. Anyways, thanks.

 
Old 10-21-2009, 09:57 AM   #7
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Re: Curious? Lupus?

Out of curiosity has your DR done blood work to check to see if you have Celiac Disease? Alot of people with Lupus have Celiac and if it had been caught years prior your probaly would have never gotten Lupus since Celiac is treatable by diet only no PILLS.

 
Old 10-21-2009, 02:00 PM   #8
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Re: Curious? Lupus?

Quote:
Originally Posted by lastigall View Post
Out of curiosity has your DR done blood work to check to see if you have Celiac Disease? Alot of people with Lupus have Celiac and if it had been caught years prior your probaly would have never gotten Lupus since Celiac is treatable by diet only no PILLS.
Nope, not that I known of. I've only seen the new dr once and my old doctor, well I haven't seen him in awhile, he's done some blood work on me before but nothing like that. I'm asking these question because I should ask my DR since it's been going on for so long and I guess I should stop brushing it off and assuming it's normal. I guess don't know how to ask and what symptoms to present him with or not seem like a worrier.

 
Old 10-22-2009, 08:41 AM   #9
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Re: Curious? Lupus?

Ashly, hi. It's odd to me that what we read says so little about GI problems in lupus. Instead, functional GI problems are typically ascribed to concurrent fibromyalgia. Yet my rheumatologist (big-city teaching hospital) was completely unsurprised by GI problems being a big problem for me. And it was very interesting to me that my GI problems resolved once I started Plaquenil for lupus, WITHOUT any other med for the GI problem or for fibromyalgia.

I think some people with lupus certainly do have Celiac as well, or even Crohn's or ulcerative colitis---while many people have "only" lupus with some GI problems. Some people do luck out by having narrower problems. I did---wasn't I pleased to find that JUST a lupus med addressed my GI issues! For what this is worth... Bye for now, with best wishes, Vee

 
Old 10-23-2009, 02:40 PM   #10
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Re: Curious? Lupus?

Quote:
Originally Posted by VeeJ View Post
Ashly, hi. It's odd to me that what we read says so little about GI problems in lupus. Instead, functional GI problems are typically ascribed to concurrent fibromyalgia. Yet my rheumatologist (big-city teaching hospital) was completely unsurprised by GI problems being a big problem for me. And it was very interesting to me that my GI problems resolved once I started Plaquenil for lupus, WITHOUT any other med for the GI problem or for fibromyalgia.

I think some people with lupus certainly do have Celiac as well, or even Crohn's or ulcerative colitis---while many people have "only" lupus with some GI problems. Some people do luck out by having narrower problems. I did---wasn't I pleased to find that JUST a lupus med addressed my GI issues! For what this is worth... Bye for now, with best wishes, Vee
Thanks for the information. Your right, I don't see much on websites about GI problems and Lupus but I have seen it play apart on the forums. Thanks again.

 
Old 03-05-2010, 01:34 PM   #11
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Re: Curious? Lupus?

Hey everybody. Just thought I would do a slight update.. ended up @ the ER for the same right side stomach pain (upper) but the U/s came back negative again & my blood count was fine, minus the low potassium again. This was a couple months ago. Well I just recently went back to the DR's again (the new one) about a possible sinus infection + I wanted to talk to him about a couple things that were bothering me ( I think now, I should have just brought my list).

Anyways, we updated my family history (couple current events) & we talked and the DR thought I had just a sinus allergy and prescribed some medicine. He also said I should have done a follow up with him after my ER visit and prescribed me something for my stomach, its for acid, ulcers etc I think. So far, it hasn't helped but its only been a few days. He asked if anybody has checked into the fatigue and I told him that I was tested for anemia in high school but it was negative & that I never went to my old Doctor much because I didn't want to seem crazy. He said we all have issues and they should be checked out and people get sick. He mentioned allergies & the fatigue being related or maybe seasonal fatigue but I told him I'm tired everyday. I just feel drained. So he said we would look into it. He did a blood test for diabetes, my thyroid, anemia, iron and my blood count I believe.... ( I forgot to ask about my potassium) well I called today and the lady said that my blood results looked fine (which is good) except that it looked like I had the flu recently or been exposed to some virus recently and that would explain any recent fatigue. I told her I have been tired for years and she said Wow, well the flu would explain anything recent but not anything before. She said the DR left a note saying "wait and see" pretty much seeing if the fatigue gets worse, but he also put a note about me seeing a cardio to make sure its not heart related. She said she would ask the DR about that and get back to me. Hopefully I hear something back today.

I'm glad those tests results came back okay but I just wanna know why I'm so tired.. heck it could be something really simple..it just would be nice to know..and what's causing the other issues, which I should bring up @ our next visit. It can't be normal to wake up tired and go throughout my whole day just feeling tired. Right? Even if I workout, I still feel tired. I just hate feeling tired all the time, amongst the other stuff, that's just the one that's around all the time. Anyways, that's my semi update!

Oh & the DR seems pretty good. He was nice this visit and seemed to want to get to the bottom of this. So we'll see. I should probably get copies of my records.

 
Old 03-05-2010, 05:52 PM   #12
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Re: Curious? Lupus?

Ashly- I too have been in and out of er with low potassium. My lowest was 2.8. Are you on supplements? I am 2x a day. I am going through a ton of tests. They thought adrenal tumor. I guess no per the bloodwork. No lupus even though i have thouht this for years. Let me know what they find out. Did you have rapid heartbeat and fatigue? my muscles ached like I had the flu too. Cardiologists says heart fine it is the low potassium causing my heart problems. Do you have any nausea or vomitting? i only puke when i wake up and it is pure bile. I also have yellow water diarrhea and am going to gastro on monday. Your stories sounds like mine so please keep me posted. Maybe we can help each other. I need all the help I can get......I have been in tears for 1 month since this started and I am a mess. Would love to hear more of your story. Mine all started with rapid heartbeat and skipping beats and off to er. They found the low potassium and sent me to an endo and here I am today doing a ton of tests......good luck- kw

 
Old 03-05-2010, 08:34 PM   #13
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Re: Curious? Lupus?

Ashely, your post sounds so familiar to me in so many ways. I too, battled fatigue (still do) for years. I also had many odd things happen to my body and like you I did not seek medical attention because I assumed they were normal body aches/pains and so on. It seemed I was at the Dr a lot for sore throats. Sometimes it would be strep. Other times it would be bronchittis. I would deal with the muscle pains and spasms and the many other weird symptoms. I didn't want to bring them up because I feared sounding like a complainer.
What I would do is complain about the fatigue every time I was at the Dr ofc. I actually started seeing a psychiatrist and was diagnosed as being bi-polar. (3yrs ago) I took meds for that for years to no avail. I was always a very energetic person. I played sports litterally all my life and I love physical fitness. I returned to the gym 2 yrs ago in hopes of solving the fatigue issue. I dropped my body fat to 17% and changed my diet dramatically. I still suffered excrutiating fatigue. Sometimes I could not get out of bed for days. It was ruining my life and my marraige.
I finally got a hold of a P.A who took my complaint seriously. He ran the usual blood test and some extra things. Turned out I had Chronic Epstein Barr Virus. The best way I know how to describe this is like having mono ALL of the time. A few weeks later after other symptoms arose (they had already been there in the past). He decided to run further test.
Turned out my ANA was positive, however just slightly. He refered me to a rheumatologist. After 3mo of waiting I finally got in. By then my health had gone totally haywire. Turns out I had lupus. I have probably had symptoms for years but could not get a dr to take me seriously. I didn't complain much but when I did I felt I was treated like I was crazy. I actually believed I was for a while. (there is so much more to my story)
Have you been tested for the Epstein Barr Virus. You may want to research it a little and ask your doctor about it. Another thing, I have also heard of Lymes disease and West Nile Virus having a lot of the same symptoms. I have not done any research on either.
Good luck,

 
Old 03-05-2010, 09:43 PM   #14
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Re: Curious? Lupus?

Quote:
Originally Posted by kw123 View Post
Ashly- I too have been in and out of er with low potassium. My lowest was 2.8. Are you on supplements? I am 2x a day. I am going through a ton of tests. They thought adrenal tumor. I guess no per the bloodwork. No lupus even though i have thouht this for years. Let me know what they find out. Did you have rapid heartbeat and fatigue? my muscles ached like I had the flu too. Cardiologists says heart fine it is the low potassium causing my heart problems. Do you have any nausea or vomitting? i only puke when i wake up and it is pure bile. I also have yellow water diarrhea and am going to gastro on monday. Your stories sounds like mine so please keep me posted. Maybe we can help each other. I need all the help I can get......I have been in tears for 1 month since this started and I am a mess. Would love to hear more of your story. Mine all started with rapid heartbeat and skipping beats and off to er. They found the low potassium and sent me to an endo and here I am today doing a ton of tests......good luck- kw
@ my last er visit my potassium was 3.1, not as low as yours. The last 2 times I went to the ER for bad leg cramps (which I still get a few times a month) they told me low potassium too. I forgot to ask the lady on the phone today if my potassium was low again. I'm not sure if they even tested it or if it would be in the lab tests they ran? I went to the cardiologists a few years back for an u/s on my heart due to palpitations and the u/s came back fine. I was suppose to go back in 6 months later but I can't remember now why I didn't. I actually just started supplements a couple days ago. I'm taking calcium, a daily vitamin and potassium. I used to take a daily vitamin all the time before but I still felt the same, but I'm sure the vitamins will still be good. I have lots of stomach issues that come and go, like currently, esp up in my right side but 2 u/s show no issues with my gallbladder.. I think years ago I was told possibly inflammation of the ribs but I'm not sure. Yes I do get nausea, it comes it goes.. but I will wake up or even through the day just be hit with nausea out of nowhere. Sometimes I will toss and turn all night because I feel so sick. My main symptom is fatigue. I just feel tired all the time. I'll go throughout my day but I still feel tired. That's been around the longest along with the on and off nausea and stomach issues. I also get headaches, I had a seizure once (I think) it was years ago..I'm not sure what else it would be.. I get those nasty leg cramps, chest pains, shortness of breath(or at least it feels that way, makes me feel faint), my face gets cold and numb from too much sugar(sweets). Sometimes my body will just ache, my fingers feel stiff at times, my left knee hurts, wrist will hurt at times, rib pain..upper right side pain..I'm sure the list could go on. Makes me feel a bit crazy. My heartbeat does beat fast at times but not always. I have two kids, my first delivery was really rough, my body wasn't contracting and I lost a lot of blood and needed transfusions, my 2nd deliver went much smoother. I just want to know what's going on and if this stuff is normal? Is it linked? Ugh. I'm sorry for the long post. When did all this start for you?

 
Old 03-05-2010, 09:54 PM   #15
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Re: Curious? Lupus?

Quote:
Originally Posted by johnstonx5 View Post
Ashely, your post sounds so familiar to me in so many ways. I too, battled fatigue (still do) for years. I also had many odd things happen to my body and like you I did not seek medical attention because I assumed they were normal body aches/pains and so on. It seemed I was at the Dr a lot for sore throats. Sometimes it would be strep. Other times it would be bronchittis. I would deal with the muscle pains and spasms and the many other weird symptoms. I didn't want to bring them up because I feared sounding like a complainer.
What I would do is complain about the fatigue every time I was at the Dr ofc. I actually started seeing a psychiatrist and was diagnosed as being bi-polar. (3yrs ago) I took meds for that for years to no avail. I was always a very energetic person. I played sports litterally all my life and I love physical fitness. I returned to the gym 2 yrs ago in hopes of solving the fatigue issue. I dropped my body fat to 17% and changed my diet dramatically. I still suffered excrutiating fatigue. Sometimes I could not get out of bed for days. It was ruining my life and my marraige.
I finally got a hold of a P.A who took my complaint seriously. He ran the usual blood test and some extra things. Turned out I had Chronic Epstein Barr Virus. The best way I know how to describe this is like having mono ALL of the time. A few weeks later after other symptoms arose (they had already been there in the past). He decided to run further test.
Turned out my ANA was positive, however just slightly. He refered me to a rheumatologist. After 3mo of waiting I finally got in. By then my health had gone totally haywire. Turns out I had lupus. I have probably had symptoms for years but could not get a dr to take me seriously. I didn't complain much but when I did I felt I was treated like I was crazy. I actually believed I was for a while. (there is so much more to my story)
Have you been tested for the Epstein Barr Virus. You may want to research it a little and ask your doctor about it. Another thing, I have also heard of Lymes disease and West Nile Virus having a lot of the same symptoms. I have not done any research on either.
Good luck,
Thats how I was too. Not wanting to bring things up, figuring it was nothing. I use to complain to my mom alot about how I was feeling, she used to always tell me to see the DR with our family history. I was just recently switched DR's. I used to go to the one my mom would bring me too but its a bigger practice and I didn't always feel like I was taken seriously or that the DR spent much time with me. I think I like this new DR so far. I I remember even complaing about being tired in high school, I thought it came after my first pregnancy but I remember being tested for anemia in high school and it was negative. I don't think my fatigue is as bad as yours (as far as not being able to get out of bed, though at times that's what it feels like) I just feel tired all the time, drained, like I didn't even get refreshed. I just started working out again too, in hopes to get engergized but its not helping and it didn't help before. I don't think I have been tested for Chronic Epstein Barr Virus? I did get tested for Mono tho. The lady did say I was postive for this virus, she said something about it being the flu or whatever. I think I'm gonna have to get copies or have the DR talk to me about my labs. The ones that have been around the longest are, faitgue, nauesa, headaches, leg cramps & stomach issues, oh and rib pain. My left knee has been hurting on and off for a little while now, my fingers get stiff, my wrist hurt at times, I get body aches, like in my legs and arms. There are times I wake up and my neck with just hurt. I started clinching my jaw, never ending sinus issues and the list goes on. I have a slight rash on my cheeks and part of my nose but its pretty faint at times, it gets more noticeable in the sun or after a hot shower. Not sure if its the Malar though. How long did it take for you to find out what was going on with your body? Did you have to switch DR's alot?

 
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