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Old 09-04-2009, 07:25 PM   #16
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Re: what were your first symptoms of lupus?

Duana, you don't have to have a rash to have lupus. Dr. Wallace writes in his hadcover that 60 to 70% of lupus patients have some skin problems at some time. But "skin problems" includes things in addtition to rashes, like oral & nasal sores, hair loss, Raynaud's, cutaneous vasculitis, purple bruise-like marks, tiny red dots, etc.

My urinary problems were extreme frequency, urgency, and pain, with UTI's ruled out. My urologist discussed IC as a *possibility*, but he decided NOT to do the knock-out test. He tried me on at least two meds to stop the symptoms, but all they did was double me up with cramps, so I had to stop them. At the time, he knew that my GP suspected lupus, but neither informed me! Then everything else really erupted, I was sent for kidney tests, I learned lupus was a possibility, I saw more dermies & rheumies---and I never looped back to the urologist.

Just like you said, certain foods still bother me, but Rolaids can help. I still have bouts of discomfort but nothing like before. I haven't taken any med specificallly for urinary problems since I started Plaquenil.

The rheumie who Dx'ed me said urinary & GI problems are common in lupus. Ulcerative colitis, Crohns, and IC can co-exist with lupus---and so, apparently, can OTHER urinary & GI misery that doesn't fit the criteria for these.

When I was at my lowest, my memory was awful. Often I was unable to sleep properly, which made it even worse.

Keep in touch, OK? Warm wishes, Vee

Last edited by VeeJ; 09-04-2009 at 07:40 PM. Reason: added a sentence

 
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Old 09-05-2009, 07:49 AM   #17
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Re: what were your first symptoms of lupus?

hi all,thanks for your replies.

over the years i have noticed tiny red blood dots under the skin (pin point size)on my stomach mostly.they have faded but i showed this to my doctor several years ago who said that my joint pains and these red spots were from aging.i was about 40 at the time.i've noticed over the past couple years that my skin really looks thin,esp on my arms.i am embarrassed by how they look because the skin is so thin that it is becoming wrinkled.i am 43 but my arms look a lot older than someone that age.i'm tired of drs. blowing off my symptoms as getting older.my memory has gotten a lot worse as i mentioned.
i've been in an ic flare on and off for a year now.

has anyone else noticed vision changes too.past six months has gotten worse.my hearing is not as it once was either due to the constant ringing.

i'm tired of a multitude of problems and no one (doctors of mine) are listening.
what tests should i ask for when i go to the dr.?any specific ones?

best wishes to you all.thank you all for taking the time to answer my questions.

duana

 
Old 09-07-2009, 08:37 AM   #18
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Re: what were your first symptoms of lupus?

my long list of symptoms began when I was a youngster....reactions to immunizations....a severe case of the mumps....so-called growing pains in my legs....severe PMS....2 miscarriages....terrible pregnancies resulting in C-sections....crippling joint pain....recurring urinary issues....IBS....horrible headaches with vision disturbances....insomnia....mood swings so bad that there were times when I thought that Dr. Jekyl was my twin(obvious CNS involvement)....butterfly rash like a wind burn on my face....I hated how I felt & hated how I looked....then 5 years ago I got so severely ill I had to quit work....my legs & feet had gotten so swollen that I couldnt walk never mind trying to put my shoes on....they finally DX me with having SLE....last year they added hypothyroid....3 months ago they added Sjogrens (SS)....getting so tired & frustrated with all the supposed drugs to try & combat things that I wonder if I will ever have a good day as opposed to having all the bad days?

 
Old 09-07-2009, 10:20 AM   #19
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Re: what were your first symptoms of lupus?

gypsylady,hi and thank you for replying.what joints bother you?mine are my large joints and spine,shoulders,and neck.

what type of urinary problems do you have?my doctor is sure mine is interstitial cystitis.i have frequency and sometimes burning.it's worse when i eat or drink acid or spicey foods.

hope you you are having a good day.

duana

 
Old 09-08-2009, 06:10 AM   #20
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Re: what were your first symptoms of lupus?

Hi Duana, I hope that you are well today....
Joint pain that I get is mostly large also....hips, knees, wrists, spine, shoulders and neck....like yours....often it is transient and moves sometimes affecting my big right toe or the bunion joint....pointer finger....the joint pain gets worse in cooler weather or if I am in an air conditioned area.... the urinary problems are recurring infections not sure exactly what they are going to call it yet....just did tests again 2 weeks ago(been on a few anti-biotics to try to clear it up but whatever the problem is it keeps coming back....get the results tomorrow along with many other results....end of July I had scopes done on my colon and a scope done on my upper GI because of recurring heartburn/acid reflux....I refrain from eating all spicy foods, no dairy, no red meat, no caffein or pop (I suspect that the main cause of my GI/IBS issues are from all the anti-inflammatories that I have taken in the past....anyhows tomorrow I will get all the results back....in my lupus brain fog moment I had thought all last week that my appoinment was for today....LOL....but it is tomorrow....CIAO for now

 
Old 09-08-2009, 06:57 AM   #21
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Re: what were your first symptoms of lupus?

gypsylady,i hope your tests are all okay!let us know how everything goes.

have a good day.
duana

 
Old 09-13-2009, 08:43 AM   #22
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Re: what were your first symptoms of lupus?

has anyone ever heard of interstitial cystitis(bladder disorder)?i have that and have heard that lupus is a sister disease of it.does anyone know if the two problems are connected?

 
Old 09-13-2009, 12:22 PM   #23
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Re: what were your first symptoms of lupus?

In terms of the joing pain? Do you experience it hopping from place to place like electrical type of pains that can jump around?

 
Old 09-30-2009, 01:08 PM   #24
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Re: what were your first symptoms of lupus?

I have been having pains that seem to radiate around my body. I have red dots all over my body but never have I had a rash. I have always been senistive to medicines, sometimes I have such a bad reaction I feel like I am dying. My hair has been falling out for years. My problem has always been having a Dr. take me seriously. The dr i am seeing now seems to act more concerned than dr's in the past that would always say it is probably stress related. I am waiting on my blood test results now but after reading the posts here I don't know if I will ever find out what is wrong with me.

 
Old 09-30-2009, 05:39 PM   #25
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Re: what were your first symptoms of lupus?

Gypsy...let us know how it goes.

 
Old 10-01-2009, 06:27 AM   #26
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Re: what were your first symptoms of lupus?

Duana, something called "lupus cystitis" (according to Dr. Wallace's lupus book) affects 1% to 5% of lupus patients. It correlates with GI malabsorption. It can cause blood in urine.

(I had all above, plus one episode of total blockage due to urinary stones. After being dx'ed with lupus & starting Plaquenil, my bladder problems virtually disappeared. From that, it would seem that my bladder problems were lupus-related, NOT interstitial cystitis.)

His book doesn't seem to mention interstitial cystitis.

Are any of your drs. actively investigating lupus?

You could just ask your urologist---and other doctors---HOW they ascertain whether you have lupus with lupus cystitis, OR interstitial cystitis, OR both. Sending best wishes, V.

 
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