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Old 09-02-2009, 08:20 AM   #1
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what were your first symptoms of lupus?

what were your first symptoms?how is it diagnosed?

duan

 
Old 09-02-2009, 05:11 PM   #2
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Re: what were your first symptoms of lupus?

Duan65, hi. I had signs & symptoms going back to early childhood, but I don't know at what point I "crossed the line". When very young: reactions to sulfa antibiotics precribed for recurrent pneumonia (convulsions & fever of 106F.) Widespread blistery rashes (possibly "bullous lupus" rashes, but it's way too late to know for sure). Over-the-top swelling reaction to insect stings. In early adolescence, episodes of severe shin & joint pain started, with low-grade fever; and crazy prolonged periods started; and bouts of fatigue. In mid-20's, GI episodes lasting weeks, multiple times a year; and episodic B-12/Folate anemia. In 30's, urinary misery & migraines started. In my 40's, nonscarring targetlike lesions started appearing on my upper arms & back, reappearing 3-4 times a year, which were finally Dx'ed as an SCLE rash = subacute cutaneous LE. (I never had a "butterfly" rash.) Last puzzle pieces: my blood finally tested positive for the anti-Ro autoantibody, and a big-city rheumie counted up 4+ of the ACR criteria.

In contrast, in some people, lupus "anounces itself" very quickly. In these people, the best-known symptoms come crahing down fast. It's easier to Dx, probably, when this it comes on like this, I imagine...

Lupus is also quite complex! There are many signs & symptoms, they can vary widely from person to person, and symptoms wax and wane. The ACR criteria also suggest this wide range: one generally has to meet 4 of those 11 to support a Dx of systemic lupus, at some point, meaning not necessarily all at once. i.e., there's no single test for the disease, unfortunately.

I highly recommend you take a trip to your library to look for lupus hardcovers, in which you'll read a real TON of possible symptoms. There are several terrific authors: one is Dr. Daniel Wallace, another is Dr. Robert Lahita.

And have you seen the "ACR criteria" sticky post, and the one with "alternative criteria"? The "stickies" are at the top of the thread list.

What about you? What sort of things are you experiencing? How long have they been going on? What have your drs. done to date? Anyway, hope above helps some. Post more when you can, OK? Meanwhile, best wishes, Vee

 
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Old 09-02-2009, 08:52 PM   #3
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Re: what were your first symptoms of lupus?

My first symptoms appeared in foot pain as soon as I put my feet on the floor in the morning, visual disturbances, general achy feeling and swelling of joints without injury or arthritis evidence. I also had a history of severe medication reaction to sulfa drugs and over reaction to insect bites (one that actually needed medical attention). I also had a long history of irritable bowel syndrome that had become chronic and interferred with my being active outside the home and limited my diet immensely. I also had a long episode of vertigo (not the typical vertigo) that I would experience a spinning sensation that would occur dozens of times a day, even while sitting perfectly still and not related to any movement etc after a Cervical fusion.

I compiled a list of the symptoms and was actually worked up by a neurologist, cardiologist and Rheumatologist, Gastroenterologist and still no diagnosis for what I considered my cluster of symptoms. I finally got a Fibromyalgia Diagnosis after seeing a second Rheumatologist, but it took the third one to test and find the Lupus.

It may not be so hard to find the answers in others. I do not fit the typical Lupus patient. I do not have the typical rash seen in many or the organ involvement (other than possible valve damage, not conclusive that lupus is the cause) but I do have some of the lab studies and other symptoms that led to my being diagnosed.

 
Old 09-03-2009, 04:52 AM   #4
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Re: what were your first symptoms of lupus?

When I was born I had an unusual health situation. My bowel was inside out and my intestines were rapped and tangled. Had surgery at 2mo old. My first Lupus symptoms were "Growing pains" as an 8year old. By 10 it was dx as juvenile arthritis. Raynoids phenomenon at 20. Surgery on feet to remove nodules at 21. 4 miss carriages between 20-25. (after 9mo in bed I did have a healthy girl at 25.) Gallbladder and appendix removed at 25. Hysterectomy at 40. Shingles at 45. Developed plantar warts all over feet and hands.Three weeks later completely engulf with joint pain and swelling could no longer walk (braces and walker).Diagnosed with RA and LUpus at 46 Discoid at 47. Diagnosed with conective tissue disease (RA, LupusSLE, Lupus Discoid) Today I am on Plaquinel, methotrexate, mega vitamins. Still have joint pain but no longer need braces or walker. Biggest problem is discoid and the sun.

 
Old 09-03-2009, 06:54 AM   #5
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Re: what were your first symptoms of lupus?

duan65, eeeek! I was told the same thing "ronics" just mentioned---"growing pains"---when I was 13. Alas, pain persisted many decades after I'd stopped growing. Wish I'd known then what I know now! Do keep us posted about how you're doing. Sending more good wishes your way, Vee

 
Old 09-03-2009, 09:31 AM   #6
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Re: what were your first symptoms of lupus?

hi all,thanks for your replies.my symptoms have been going on for a very long time.i've had a lot of blood work over the years and i am thankful it always comes back okay.i am 43 and have had ibs/c since my teen years.a few years back i've had right side pain and it lasted for months.i had an ultra sound and it was normal as well.i had another episode of this last year.i think it is ibs as it always goes away after months though.i also have had interstitial cystitis which is a bladder condition since my early 30's.i mostly have a frequency problem and there is micro blood in my urine but no bacteria so it is not an infection most of the time.my other problems are and the list is long....joint pains,especially in the large joints.back,shoulder and neck pain.i'm sure i have disk problems as well.i have tinnitus,constant ringing in my ears.my lower legs sometimes swell if i'm standing or sitting too long.my fingers will go numb if i'm outside on a cool day and will stay that way for a while even after coming indoors.i'm tired all the time,even as a child,i would have rather taken a saturday afternoon nap than be outside playing with the other kids.i have recently developed a lot of allergies,from seasonal allergies to food.my vision gets blurry with them too.i really feel my joints aching in cold weather,mostly my legs and back.i'm cold all the time when others are not.i usually dress in layers inside in the winter.i have noticed on and off that once in a while i will get a few red spots on my forehead after a hot shower.i t doesn't happen all the time.last year i had a couple of low grade unexplainable fevers.i've had chronic insomnia for years.i've been on a beta blocker for years due to a fast heart rhythm.i'm depressed a lot and have an anxiety disorder.see,i told you the list was long.thanks for listening.
what is anyone's opinion on what i mentioned?thanks for your input.
hope you are all doing well.
duan

Last edited by duan65; 09-03-2009 at 09:35 AM.

 
Old 09-03-2009, 03:26 PM   #7
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Re: what were your first symptoms of lupus?

Quote:
Originally Posted by duan65 View Post
hi all,thanks for your replies.my symptoms have been going on for a very long time.i've had a lot of blood work over the years and i am thankful it always comes back okay.i am 43 and have had ibs/c since my teen years.a few years back i've had right side pain and it lasted for months.i had an ultra sound and it was normal as well.i had another episode of this last year.i think it is ibs as it always goes away after months though.i also have had interstitial cystitis which is a bladder condition since my early 30's.i mostly have a frequency problem and there is micro blood in my urine but no bacteria so it is not an infection most of the time.my other problems are and the list is long....joint pains,especially in the large joints.back,shoulder and neck pain.i'm sure i have disk problems as well.i have tinnitus,constant ringing in my ears.my lower legs sometimes swell if i'm standing or sitting too long.my fingers will go numb if i'm outside on a cool day and will stay that way for a while even after coming indoors.i'm tired all the time,even as a child,i would have rather taken a saturday afternoon nap than be outside playing with the other kids.i have recently developed a lot of allergies,from seasonal allergies to food.my vision gets blurry with them too.i really feel my joints aching in cold weather,mostly my legs and back.i'm cold all the time when others are not.i usually dress in layers inside in the winter.i have noticed on and off that once in a while i will get a few red spots on my forehead after a hot shower.i t doesn't happen all the time.last year i had a couple of low grade unexplainable fevers.i've had chronic insomnia for years.i've been on a beta blocker for years due to a fast heart rhythm.i'm depressed a lot and have an anxiety disorder.see,i told you the list was long.thanks for listening.
what is anyone's opinion on what i mentioned?thanks for your input.
hope you are all doing well.
duan

 
Old 09-03-2009, 06:47 PM   #8
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Re: what were your first symptoms of lupus?

duan65, obviously I'm just a patient & can't know if a single root cause could be behind all your problems, but here are some things you could consider.

You mentioned IBS. Have you taken meds for it, and have they helped? My rheumie pointed out to me during my 1st appt. that because my IBS meds had NEVER HELPED, that should have been a BIG RED FLAG to my earlier doctors that they should have considered OTHER causes. (Repeated tests had ruled out ulcerative colitis & Crohn's for me, so that left IBS. But once I started Plaquenil for lupus, I haven't had an "IBS" episode since. I don't think it WAS ISB, is what I'm saying.)

Likewise, for IC, were you officially Dx'ed via that horrible knock-out test? (BTW, it's autoimmune, too.) Do you take meds for it? And have they helped? If not, that could be another red flag. (Meds I tried hadn't helped me there either = another red flag.)

Then look at the Dx'es you've been given so far & see how much they explain. For example, could IBS and IC explain all/most of your symptoms? Would your joint pain fit into either? (Etc.) If you have too many symptoms that don't fit your Dx'es, then that's a red flag, too.

It's also interesting to me that you keep getting "add-ons". I did that, too, and finally concluded it all HAD to be related somehow. They were different problems & yet they felt related, is the only way I can explain it.

One of my local drs. said something quotable to me: when so many disparate things are going on, a dr. should look for a "single bullet theory". There may not BE a single one, he said, but a doctor should look.

This is badly written---I'm struggling for words here... I'm guess I'm trying to convey *ways of thinking* that you want to see in your doctors. I hope you can get one or more of them to take a big step back, to see if there's a BROADER picture that's been missed.

Do you get along particularly well with your GP, your gastro, or your urologist? Whomever it is, maybe you could start there & talk about the possibility of a broader picture. I do hope you work your way to a rheumatologist, as that's certainly one branch of medicine that it would make sense to consider, I suspect. Keep in touch, OK? All my best, Vee

 
Old 09-03-2009, 07:48 PM   #9
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Re: what were your first symptoms of lupus?

hi vee,just one other thing,have you ever been asked,"why do you have so many different things wrong with you,if it's not one thing it's another!?"i've been hurt by people asking me that before.it's not all in my head.my doctors blow everything off.one awful doctor i had once said,"people like you don't want to get well".she is not my doctor anymore.i don't know what to do.i take no meds.except the beta blocker and ocassional xanax for sleeping.i take metamucil for ibs and has helped a lot.the ic,i only use ant acids and prelief because i cannot afford 300.00 per month elmiron.

thanks vee for your advice.hope you are well.
duana

 
Old 09-04-2009, 03:40 AM   #10
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Re: what were your first symptoms of lupus?

Duana, doctors said AWFUL things to me, too. Most foolish: "You MUST stop DOING this!", as though he could order my problems away.

Most obnoxious: dermie I'd been referred to by my new GP. Dermie asked, dripping sarcasm, "What's going ON between you and your 'friend' Dr. _____ ?" He pounded his desk so hard the papers jumped, and shouted, "You go tell your 'friend' Dr. _____ that I said that he's a [bleep bleep]!" So I leaned over, pounded his desk so hard his papers jumped, and snarled, "I am NOT Gunga Din! I do NOT carry water or bear messages!" (This strikes me as wildly funny now, but at the time it was horrible.)

Most ironic: one dermie told me that my targetlike rashes were FLEA BITES and ordered me to get rid of my beloved dog. Furious, I drove straight to our vet, who knew right away these weren't flea bites. Imagine... when your VET does a better job with you than your DOCTORS...!

SOME THOUGHTS: Are there local autoimmune support groups you could ask for doctor reco's? Also, check out the "Posting Policy" very carefully (per link above) for "Do's & Don'ts" about requesting & posting doctor info; you can get suggestions from readers here, *if* all parties abide by these Board rules. I hope others will chip in soon with more ideas. With big hugs, Vee

 
Old 09-04-2009, 04:39 AM   #11
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Re: what were your first symptoms of lupus?

P.S. Duana, forgot to say I had tinnitus, too, during overall episodes. It was the worst when I was moving vigorously, e.g., step aerobics class. Along with the ringing, my inner ears hurt badly, and I'd lose my balance & sometimes fall. I gave up step aerobics, along with everything else that demanded high energy. But, after Dx, I haven't had ringing ears since starting Plaqeunil. However, sometimes the bony outer ridges of my ears (pinna) turn red & hurt. For what this is worth, Vee

 
Old 09-04-2009, 08:20 AM   #12
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Re: what were your first symptoms of lupus?

vee,does everyone have to have a rash with lupus?i don't,just once in a while i'll get some red spots on my forehead after a hot shower but it goes away.

did you say you have interstitial cystitis?if so,what are your symptoms and how are you keeping it under control?diet helps some.


thanks for all your information.i appreciate it.


duana

 
Old 09-04-2009, 09:05 AM   #13
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Re: what were your first symptoms of lupus?

i forgot to add,does anyone else notice that their memory isn't what it used to be,being more forgetful than usual?this has happened worse over the past year.i don't know why i'm falling apart at 43.i'm sick of doctors!i've been to many over the years and they all blow everthing off.


duana

 
Old 09-04-2009, 05:53 PM   #14
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Re: what were your first symptoms of lupus?

a skin rash gave me a quick dx. my dermie biopsied the rash and it came back positive for lupus. mine were on my upper arms initially and were dime sizes and a purple color. eventually they traveled all over my body. plaquenil helps keep it under control although my chest is always red and gets redder when I flare.

 
Old 09-04-2009, 07:19 PM   #15
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Re: what were your first symptoms of lupus?

Duane, I don't have the typical butterfly rash either, but I do occasionally have a reddened area on my cheeks, kind of resembles a wind burn look that will appear and disappear in a few days. I do have not warts but circular raised abrasive growths on two of my fingers. They are bothersome when I type or do something requiring expert dexterity. But I file them down with an emery board. They are like dried callouses of sorts. Those and occasional single blister lesions that scar that are on my upper arms and back are the only skin problems that I have other than an obvious thinning of my skin in the last 2-3 years.

The memory challenges I attributed to FMS but I seem to be better with the fibro fog since diagnosed with Lupus and on Plaquenil therapy.

Last edited by goldyfm; 09-04-2009 at 07:22 PM. Reason: additional comment

 
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