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Old 01-22-2008, 02:00 PM   #1
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please share stories of symptoms before you DX with lupus

Tested today for lupus and need to know what other people suffered with before being Dx with Lupus Thanks for sharing

 
Old 01-23-2008, 08:21 PM   #2
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Re: please share stories of symptoms before you DX with lupus

Hi -

Sorry you need to be here, but for most patients, lupus isn't the awful diagnosis it was 40+ years ago.

I was tired for two years, but chalked that up to being in my mid-40s with husband, two teens, and a full time job.

Then one day after lifting a heavy suitcase while wearing sandals (don't know if that really matters) I awoke with swollen feet, tiny red dots on feet, ankles, and lower legs, and an oval raised edge non-itchy place on each forearm. Odd. Three days later, the feet were no better, so I saw a family practice doctor who said I had "plantar fascitis" (swollen soles of my feet) and didn't have a clue about the spots on my forearms. I was given a Rx for Celebrex which I filled and took. Thus started a crazy three weeks when my forearm spots multiplied to cover elbows to fingers and my hips, knees, and ankles took turns swelling. My legs hurt so much I could stand for only 15 to 20 minutes. Yikes! 2nd doctor (dermatologist) biopsied the arm spots. 3rd doctor (internist) got blood tests that showed slightly elevated ANA and twice the normal sed rate and told me he thought I had lupus. He sent me to the 4th doctor (rheumatologist) who deduced that a huge part of my problems were due to an allergic reaction to that Celebrex (many lupus patients become allergie to sulfa and Celebrex has a sulfonamide in its chemical make-up - who knew?). I was much better once off Celebrex, but 6 weeks later my ANA was much higher and the rheumie said probably lupus, but time would tell.

That was all in late spring 1999. Aside from fatigue, some arthritis, and thinning hair, I've been fairly okay. I do get sick from fatigue or whatever more often and can no longer work at my profession because of absences (bummer). I stay out of the sun as sunshine makes the fatigue and aches much worse.

That's my story in sort of a nutshell.

Wishing you well! Barbara
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Old 01-24-2008, 03:36 AM   #3
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Re: please share stories of symptoms before you DX with lupus

Hi. I had two critical illnesses in very early childhood, and doctors realized then that I needed to avoid penicillin and beware of insect stings (wildly hypersensitive reactions). At 8, a widespread bullous (blistery) rash. At 13, crippling joint/shin pain, elevated sed rate, depressed WBC, and low-grade fever; and aberrant periods. By early 20's, chronic irritable bowel. By early 30's, migraines, sciatica, and frequent UTI's. By mid-30's, irritable bladder, urinary stones, and anemia. Last to arrive, in late 30's, was the most definitive: recurring targetlike nonscarring rashes on arms/torso. (These problems were cumulative & recurrent, except for the bullous rash.)

I was finally Dx'ed with SCLE (subacute cutaneous LE). Was positive for anti-Ro---but negative for ANA, which happens sometimes in people with anti-Ro. Have been on Plaquenil ever since, and MUST avoid sun.

In short? I feel I was headed to this Dx from the get-go, but S-L-O-W-L-Y. Many periods of extreme frustration, but things MUCH better now, finally. Best wishes to you, from Vee

P.S. There are probably as many combinations of symptoms, test results & "speeds" as there are people with lupus. So if you don't match up with anyone who responds, please don't let that deter you from pressing for answers. And let us know how you're doing, OK? Bye, Vee

 
Old 01-24-2008, 07:12 AM   #4
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Re: please share stories of symptoms before you DX with lupus

Thanx so much for replies. Still waiting for results.

 
Old 01-25-2008, 10:04 AM   #5
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Re: please share stories of symptoms before you DX with lupus

Hi, I am now not sure if I really have lupus or not, but there are symptoms that I can remember happening while having flares:

My first flare up happened when I was about 20 yrs old. Since then I've had many flare ups, not always the same symptoms each time and I dont know if its' all related....

joint pains (started in right ankle, progressed to left ankle, other times it was in my knees; about 4-5 yrs ago I developed severe spine problems, mainly lumbar, though Im told this is not lupus related; had pains in my cervical spine, left shoulder, hips, and hands more recently). Sometimes its only 1 or 2joints, other times its all over;it's not necessarily always on both sides either.

joint swelling - have had severe swelling in my left ankle not been able to walk on it (just last April was finally diagnosed with chronically torn tendons, thickened tendons, tenosynovitis, osteochondral lesions, and severe arthritis in that ankle), have had some swelling in knees, and have also had swelling in my lumbar spine, right about where L5/S1 is

joint stiffness - many times its all over , weather & humidity really seems to affect it; stiff in morning and when sitting for more than 15 minutes or so. Sometimes I am really stiff all day, though moving around seems to alleviate it some.

rashes - have had a butterfly shaped raised red, plaqy rash across my cheeks and nose and at same time long, red oval shaped rashes on both inside bottom arms; a dermatologist suspected lupus, had an elevated ANA at the time; have also had small circular red ring rashes with clear centers that never itched or anything; have had weird flaky rash type thing along my hairline; have had tiny blistering rashes along the sides of my outer fingers and hands, they were extremely itchy; it wasnt pus filled, but more like clear watery substance, when they broke open, the whole area would turn brown like a scar would; also had this weird thing happen on the tops of my hands - I would get what looked like a large round bruise on both hand tops, but it didnt hurt. Then the skin would kind of harden & it would be raised and kind of whitish, kinda like a bunion or something would. It didnt itch though. Every single rash i've had has always eventually went away on it's own.

Hives and Angiodaema - usually happens when I have other symptoms, I get hives on different areas of my body and doesnt seem to correlate w/ soaps, detergents, foods, etc. I also get huge hive like swelling on my face (around my eyes, around my lips, and sometimes along my jaw line)

Possible migraines without headaches - I get the visual disturbances, loss of vision, ear ringing, smelling weird things, weird taste in my mouth; but never had the actual headache right after (though I did get other headaches all the time). Recently, though, Ive vomited suddenly, and gotten these auras, and also the headache with it and then suddenly fell asleep

Eyes sensitive to light - this has just happened recently, sometimes I have ot wear sunglasses inside;

Pain in eyes, blood spots in eyes

Low grade fevers

Bladder infections, bladder hesitancy, bladder fullness, though I think some of my bladder issues seem spine related

Fatigue - many times has been unrelenting and terrible; I would feel like my whole body was a cement block that I was trying to move; it sometimes gets very difficult to walk up even one stair;

When I get that fatigue, I cannot get enough sleep; sometimes I've slept 16 hours straight but still not feel like i didnt get enough

Eyelid swelling - sometimes my entire eyes were almost closed shut, looks like my eyelids are all swollen or bloated; This only happens while in a bad flare or when im off steroids

Muscle pains - which I think are related to the fatigue. I dont always get muscle pain with flares, though.

Muscle spasms and cramps - have tried calcium, magnesium, zinc and other remedies and nothing seems to help. I do know many of the spasms I get are spine related, though.

Restless Legs - have had a few episodes of this

Hairloss/thinning - I never lost it where I had bald spots, I would lose alot of hair all over. I even started wearing my hair up b/c it was embarrassing how my hair would be everywhere. Like all over my chair/desk at work; it would be all over my bed, everywhere.

Sores in nose

Had some blood & protein in urine one time that I know of; I though i had a bladder infection, got an in office test and the doc said I had some blood & protein in my urine; was referred to a kidney specialist and that doc totally dismissed me, so never checked into it any further

nausea & vomiting without auras or headaches

 
Old 01-27-2008, 05:44 AM   #6
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Re: please share stories of symptoms before you DX with lupus

Hello,
I was just diagnosed this week with the SCLE (Like Veej)
Now that I know what is going on, I am starting to see symptoms that I didn't know were symptoms when they were happening.

This big "flare" that made them start digging into blood tests did not present like typical Lupus at all. It looked more like an allergy so of course I saw a deramtologist and an allergy Doc.

The first thing I can think of that started it, the docs are not even sure are related to the Lupus. I caught a nasty stomach flu from a patient. I passed it around to the family and then we all got better. At the time, I had just started Spironolactone (SULFA) for some acne that I now realize was really not that bad.
20 days into the Spironolactone Is when it started happening.
I came home from work and noticed I had very itchy hands and feet.
I took Benadryl and went to sleep. When I woke up,
I had hives all over me and very itchy hands and feet. This got worse over 2 days and because it was Thanksgiving nobody but the ER was open.
I went to the ER because my throat was starting to itch and feel funny.
This is when I started Prednisone. a 60mg for 5 days thing. When I stopped the Prednisone, My throat almost closed. This happened 2 times and they decided to call it Prednisone dependant angioedema. They gave me a list of new meds to take and an epi pen. They also reccomended that I stay close to the hospital. GREAT!!!
Both of my Doc's were pretty confident that it was Acute and would just clear up within 6 weeks. At that point they just called it idiopathic angioedema with urticaria.
Well the hives turned into dermographism which is also called the skin writing disease. Basically you can draw on my skin with your finger and it will leave a purple trail of hives that last about 15 minutes. ( I have some great photos of this).
In the end I tapered myself off of the prednisone. My throat survived.
It started on the 19th of November. As you can see it has been more than 6 weeks. I still have dermographic hives. Once off of the Prednisone, I began to have other issues.
Very sore knees, hips and my right wrist. Also my ankles swell and hurt at night. I had two mouth ulcers right on my hard palate. And yes I think they do hurt. One on my tongue that hurt a lot.
was also losing my hair in clumps.
My muscles in my thighs get really sore also. The Doc ran some blood tests also.
My first ANA was 1:320 second was 1:140
My anti Ro/ssa was positive
My C1Q assay was low
I also have a huge family history of autoimmune disease and I have had hashimotos since I was 19. (I'm 31 now)

The thing that I didn't realize was related was what I called my "heat rash" I was from Alaska and I figured my fair skin wasn't used to the sun. Over the past 2 years I would get a huge red map looking rash on my chest. It would last a few days and then go away. Of course I would just pop on another strapless and go until it showed up again. Last year it got worse and now I get flu like nausea fatigue and aches just from being in the sun.

I also have very cold hands and feet. They turn white but not red and blue.
I have also told my Primary Doc in the past that my body feels depressed. Like I can't make it get up and do the things my brain wants it to do if that makes sense. They blamed it on my thyroid but never changed my dose. Hmmm I guess we know why I feel like this now.
The Rhume immediately knew what was wrong with me. She put me on Plaquanil right away. This was Thursday. I am really worried about how I will do this summer with the sun. I am scared to death of having another flare. I still feel tired and very sore but I haven't had a mouth sore in a few weeks.
I think the dermographism is kind of fun now. My boss wrote his name on my arm and got a big thrill. He's an ER Doc and he still is impressed by it.

Anyway, that is my short story long.

 
Old 01-28-2008, 12:11 AM   #7
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Re: please share stories of symptoms before you DX with lupus

My lupust started in a very unusual presentation. First I lost vision in my left eye followed by severe weakness in my arms and legs and then lost vision in my right. The neuro opthomologist diagnosed me with bilateral optic neuritis and the neuro diagnosed transverse myelitis. I was given a few months of solumedrol treatments then IVIG treatments for 6 months. My sister has sle so my mom wanted me to rule it out and it has been known rarely to produce this, so I went to the rheumi to rule it out. The neuro didnt know what was causing it. He said it wasnt MS. He said he has tested me all he could and short of an autopsy didnt know what else to try.

My rheumi took my history and did extensive bloodwork. My bloodwork was fine with the exception of my anemia. He made me a follow up appt for three months. I actually was planning on blowing it off since I was really tired of going to dr's at that point only to still have no idea what was causing all of my pain, numbness and well my body had seemed to turn on me. My boss and my mother insisted that I keep the appt so I did. He ran all of the tests again and this time even though my ANA was still negative my ro/ssa was strongly positive. I had other indications too. My white cell count was elevated as well as other things. At, that point I was taking 40 mg of prednisone a day. With my eye problems, we didnt feel plaquanil was a good choice. I stayed with the prednisone as long as I could. Then the joints just started getting to bad, I was getting costrocondritis and pleurisy. I also managed to fracture 2 ribs.

He put me on methotrexate for a year. I did see a little improvement, but it just never seemed to have any impact. My bloodwork continued to look bad, along with eventually having a strongly positive ANA. Then I got the shingles and my liver count went through the roof. They took me off the mtx and put me on Cellcept. My kidneys started to decline. I had had rbc's in my urine from the start. A urologist did all the tests to make sure it wasnt bladder cancer and sent me back to the rheumi..I took the cellcept for about a year. My legs continued to swell to pitting edema from below my knees. I have a huge bakers cyst on my left knee that really gets bad if I am on my legs too much. I have now developed hypertension. My bp has been getting up to 170/100 and I am now on 2 bp meds to help control it. It still hits borderline but has stayed below 140/90. My last urine had red cell & white cell casts as well as protien. I am now on monthly infusions of cytoxan. We are hoping this will get my lupus under control. I have many swollen lymph nodes (not lymphoma, we had that ruled out by an oncologist). I also have an overlap of Scleroderma which is also diffuse and is shown to be invading my left lung. It has so far effected my legs, both arms, my chest, back, hips and face. My hands are starting to swell to. Some of it is probably due to my kidney problems as well.

Anyway, this has all been within the last 3 years. Prior to that there were signs that I blew off, like days where my skin would just be on fire. Alot of stomach problems (since I was 16). I have always broken out in a rash when I am in the sun. The sun actally makes me break out is hives. I had to have a hysterectomy due to bleeding problems 6 years ago. Looking back I suppose there were signs. But once it got active, it has never slowed down. I am really hoping this med will have some effect and put it into remission if just for a little while.

Erin
Dallas TX

 
Old 01-28-2008, 10:00 AM   #8
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Re: please share stories of symptoms before you DX with lupus

Hi, everyone. I was diagnosed with lupus in April of 2004, but I believe my first symptoms started in 1994 when I was 26. I just remember being really achy and feeling sick in a general way one Saturday. My joints hurt, the lymph nodes in my neck were swollen, and I had all these little red dots on my skin. Also, before this day, I had never had any allergies in my life, but after this day and ever since, I began to have itchy, burning eyes, a lot of sinus problems, and itchy skin. I also had these blister-type things on my fingers that had a red-purple blood spot in the middle of them. I went to my GP, but he had little clue as to what my problem was. Went to a dermatologist about my skin, he told me I was allergic to fabric softener. I actually wondered if might have HIV and had a test done, which was negative. I was prescribed all kinds of creams for my itchy skin, but nothing helped until I was given a dosepack of prednisone. All my symptoms went away magically and stayed gone for years.

Around 1999, I began feeling like I had a lump in my throat all the time, like something big was in there partially blocking my throat. The doctor said that all she could see was some inflammation and swelling. The swollen mucous membranes were what made me feel like I had a lump in my throat. I was prescribed a steriod spray, which worked well. Around this same time, I began having nosebleeds. My nose had never bled in my life, then bang, having a nosebleed almost every morning. My doctor told me my membranes were dried out which made them easy to break and bleed, so I tried moistuizing them with humidifiers and a spray. The membranes in my nose were dried out, but the question was why? The nosebleeds tappered off in a few weeks.

Months later, I began experiencing lockjaw, which freaked me out. I would just be talking or eating or whatever, and my jaw would lock open. No pain. It might stay open for a few minutes or an hour or two. I had none of the conditions that made your jaw lock up, so my doctors were stumped. This symptom also mysteriously stopped happening after a few months.

I started getting what I call "lupus acne". I got these bumps on my body that would stay inflammed for weeks and would not go away or heal like normal acne does. And they would return again and again in the same spot. There are some on my legs and arms right now that have come and gone over and over since 1999.

Most of this stuff quieted down and nearly stopped for several years. In October of 2003, immediately after I was in a car accident in which I was unhurt, but my car was totaled and I was extremely traumatized and my nerves were shot, a whole cascade of symptoms started. My scalp started to itch, and large red pimples sprung up and I had extremely heavy dandruff. My hair began to gradually fall out from the root. I began to see blood in my stool on a regular basis. I had a hard time getting out of bed in the morning because my ankles had stiffened up overnight and hurt. The long bones in my arms and legs ached. I started getting so tired so early in the day. The insides of my ears were raw and oozy and scabby. I lost most of my appetite. My skin, hair, and mouth were extremely dry. I got this red, circular rash along my jawline and on my arms and back and my skin was red all around my eyes and nose. The tiny red dots on my skin returned, along with mysterious bruises and purple splotches. And I began itching again, all over, all day.

It's funny, but of all the symptoms, it was the itching that was the worst. Even if I managed to get dressed and groomed and felt pretty okay, the itching was always there. It got to where all I could think about all day was the moment I could go home and take some Benadryl and go to bed and not have to itch and keep myself from scratching like a maniac in public.

My GP thought I had an allergic rash and a scalp infection and gave me antibiotics, which improved nothing. About 6 months after all this began, I was diagnosed by a dermatologist in about 5 minutes. He took one look at the list of my symptoms, examined the skin all over my body and my shedding hair and told me he thought I had lupus. He ran the ANA test, which virtually confirmed it. He refered me to a rheumatologist, who ran all the blood and urine tests that showed my immune system had gone berzerk. I had a kidney biopsy that showed I had a moderate amount of damage from nephritis, so I have to watch my kidneys from now on. They are doing well.

After a long spell on prednisone (I started at 45mg in 2004 and I am down to 2mg a day), my lupus has been under control for over two years. The prednisone along with plaquenil seem to be doing the trick for now.

Lupus is one long, weird trip, that is for sure. But all but the worst cases can usually be controlled so that you can live pretty normally. I guess the years will take a toll on anyone with a chronic disease, but you can cope by having a good support system and being an informed patient. Best of luck on your trip!

 
Old 02-05-2008, 06:24 AM   #9
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Re: please share stories of symptoms before you DX with lupus

hi, i was diagnosed with SLE in november 2007.

it all started like the flu, i had high fever wouldn't eat, bad stomache pains and tierd all the time. Then things started to get worse i had red rashes on my knuckels(sorry i can't spell) elbows and knees my mum and dad still thought it was the flu and the rashes were just some sort of virus. It was when my joints started to stiffen that my mum wasnt so sure that it was still the flu and decided to get call out doctor because at this point i was finding it hard to move around the house. The doctor suggested we go to the hospital, at the hospital the rashes seemed to baffle the A and E doctors all my blood results came back abnormal my red and white blood counts were really low.(im hoping this is making sence) within a couple of days i was transferred to another hospital for a bone morrow op. When the results of this came back i was diagnosed with lupus and spent weeks in hospiatal on methol prednislone( dont know if its spelt like that) that was given to me in a drip i was also on antibiotics also given to me through a drip. After being on the methol pred for a couple of days i stared to eat and feel better. now months on i am still suffering from tierdness and keep going back to school but each time i do i pick up a new bug (annoying) i am now on aziathprin hydroxyquine omeprazol and prednislone (oral)

but before any of this i had years of sever stomache problems that no doctor could explain they would be all over my stomache not just in one perticular place but all blood test came back normal all scans untill they did a endocsocy and coloscopy(again sorry for the spelling) and this showed that i had coeliac disease which i have read can be common with lupus, has anyone else had any stomache problems like this????

also when i was about 4 (i think) (not sure if this is necessary ) i was rushed to hospital with fever rashes and couldnt keep anything down water or food the doctors did mulitpul test but nothing came back abnormal so they just said i had a mysterious bug which did subside after a couple of weeks.

i have been suffering with my health (nothing serious) for a lonf time but everytime doctors did there tests nothing would come back (annoying!!!) but now that i have been diagnosed with lupus we hope all the other problems will have subsided or can now be seen as a side effect of the lupus.

hope my long story has helped some and hope you get some good news soon.

best wishes xx

 
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