Lupus Foundation of America - Lupus Symptoms

Cold/Flu season

Kathryne — 2010-09-06T22:54:20 -05.00

I was only diagnosed a month ago, so forgive my ignorance. We're coming on cold and flu season (it's already hit me - have had a severe cold/cough for more than a week now.) Are we at greater risk or less risk for catching the cold and flu?

It would seem I already know the answer to that, but I honestly don't. I've read some conflicting reports. As I recall, I was very ill with colds, flu and sinus infection last fall 3 times in 5 weeks. It was horrible. I think that's what kick-started this for me. I haven't been the same since then.

Thanks!

Kathryne

Clotting

KHubbs108 — 2010-09-06T21:48:22 -05.00

I don't know what a blood clot would feel/look like and i need some help here. On my left lower thigh, I just noticed a relatively large, round, painful bump. it is painful and warm to the touch -- feels like a really big bug bite. i am worried because i have a UTI/kidney infection for about a month and i have been taking antibiotics for just as long, and i know the infection is still there. i have MRIs scheduled for wednesday of my kidneys and liver but right now am really worried about this blood clot. what are the next steps in the progression of this if it were a blood clot? what does it look and feel like? when should i be concerned enough to go to an ER?

thanks in advance for your help.

-kristie

Just wanting to know

Airalise — 2010-09-06T20:53:35 -05.00

I was just wondering does anyone else suffer from really bad headaches. I am on planiquil started it about a week and a half ago, I was already getting headaches off and on but now I get them more frequently and I get real hot my a.c is 72 degrees and I also have a fan that is always pointing at me also sometimes they come out of the blue not real sure why dose this happen to anyone else????? Or should I let my doctor know?

joints feel like they pop and is terribly painful

Duana — 2010-09-06T14:23:59 -05.00

does anybody else have a feeling that their joint just popped out of place and went back in?i've got that problem right now with my left shoulder.it can be fine but if i move it a certain way,there is an excruciating pain that happens right in the shoulder joint(socket).the pain is terrible but doesn't last long.that has happened in my hip joint/socket also.it has happened in my knee joint but doesn't hurt really bad but has made me feel like i was going to fall like my leg would give out.

tinnitus

Duana — 2010-09-05T23:14:36 -05.00

Does anybody have tinnitus,the awful non-stop ringing that simply drives a person crazy?it's way worse in a quiet room as i am sure anybody knows who suffers with this.lately mine has gotten louder and has made my hearing worse.doctors blow this off as fluid in my ears due to allergies.one doctor actually wanted me to take diuretics.allergy pills do not help.nothing does.does anybody know what causes this or how to cure this?is this connected to an auto immune disorder?

Duana

Is it possible to have lupus most of your life and not get a diagnosis until decades later?

Duana — 2010-09-05T23:07:55 -05.00

Is it possible to have lupus most of your life and not get a diagnosis until decades later?In the past it seems that no one believes me including doctors that think i am a hypochondriac looking for sympathy or attention?I have not felt good most of my life and am seeking a diagnosis,well,actually have been looking for one for years.I am not a crazy hypochondriac type person looking for sympathy,only a name that i can call these awful symptoms i've been plagued with since childhood.i hope there is some medication out there that can atleast help with this horrid chronic fatigue and joint pain,memory changes,etc.etc.i need a diagnosis first,not told that this is a normal part of aging.

Duana

gastrointestinal issues

Kerry — 2010-09-05T22:27:55 -05.00

I was recently hospitalized for approximately a week and half in and out of the hospital for issues with my gastrointestinal system. I have had this issue before but not for about 5 years. I get intense pain in my stomach. It is so bad it makes me vomit. I then get fluid on my stomach that they have to drain off. My stomach sticks out and looks like a malnutritioned person from a third world country. I have been to Cleveland Clinic regarding this issue 5 years ago and they gave me no real answers. Finally, after the last episode, my rheumotologist along with a internist think that I am one of the 1 to 4% of Lupus patients who has the gastrointestinal symptoms of Lupus. (Lucky me). It comes on all of a sudden with no real warning at all. I have no other "flare" symptoms. They say that the intestines just get inflammed and that results in the pain and swelling of the abdomen.

I was wondering if there is anyone else out there who has this.

Peripheral Vascular Disease

heatherdawn — 2010-09-05T15:12:19 -05.00

I am still waiting for my dx of Lupus, however I did get my results from my circulation tests that I recently had done because of the swelling etc in my legs and feet.

As it turns out I have Peripheral Vascular Disease, a mild form but still there ... for now they want to treat it with walking and those stocking things ...

I was wondering how many of you have similar issues or have been diagnosed with Peripheral Vascular Disease?

Thanks.

Heather

lupus but no rash

Duana — 2010-09-05T13:50:54 -05.00

can some people with lupus,have the disease but NOT the rash?

question for @pghroe

Bonbon — 2010-09-05T12:19:23 -05.00

hey there

i posted this under the spots on brain but in case you didnt see i wanted to ask you about your brain stuff. anything you feel like telling me would be great!

Originally posted by: Bonbon

hey roe
i see you've just joined and werent around when i had a thread called disembodied..... sounds like we might have a similar feeling. when i talked to my rheum he said, its the inflammation making me feel that way (he already knows i have cns involvement, but this was a new symptom) ..... i havent actually been in to see him yet (apt sept 22) to go over the next step.
anyway its an awful feeling isnt it. did you have vertigo, depth perception issues, and other odd neuro stuff with it
i'd be curious to hear more bc so far you are the first person on the forum to say they had it too.....
take care!!!!!!!!!

Do you look sick?I do.

Duana — 2010-09-04T19:22:03 -05.00

On days when I am not feeling well or feel worse I notice I look sick.I look pale and usually get that "hollow"look to my eyes with a darkening around them,a tired sickly look.I feel so embarrassed by how I look some days.I try to use extra makeup.On days where I am not feeling too bad,I notice my complexion looks better and I look healthier.

Anybody else or is it just me?

Duana

Exotic Pets???

Lupus444 — 2010-09-04T17:03:34 -05.00

OK so here is a question for anyone who may have some input...

My stepson came home today wanting to purchase a Chinchilla. These are exotic animals from South America. My question is a is this a threat of any kind in the way and disease or infection to someone on Chemo, steroids, with Lupus and a weakened immune system?

Thanks!
PJ

why so transient?

marie — 2010-09-04T07:19:11 -05.00

Has anyone ever been told exactly why various symptoms can be so transient? I mean literally lasting only a day or hours. I keep a pain journal just to track symptoms (no, not being OC) but am hesitant to tell rheumy for fear he will think I am just being a hyperchrondiac. But I really don't understand how my tendons in one finger, for instance, can be so painful for hours and then stop....add hips, iliac crests, wrist.

I've read people's stories about how the pain, swelling can be very brief and migrating. But why?

profound fatigue/sleeping/tired/exhaustion

Duana — 2010-09-04T00:01:07 -05.00

I feel so fatigued,tired and exhausted lately.I have to take short naps just to get through the day.Seems like I just need to sleep so much.Does anybody else understand what I am going through?Does anything help to over come this horrible fatigue?I don't want to be viewed as lazy and that is what I am afraid others will think of me.

Lymph node/ Armpit problems

animala — 2010-09-03T23:11:52 -05.00

I believe I have Lupus however I've been diagnosed with "non-specific connective tissue disorder". I've been on plaquenil since April and although I've noticed a little bit more energy it hasn't been nearly what I had hoped.

My symptoms when I was diagnosed were: fatigue, low fever, butterfly rash, hair loss, bruising, joint pain, fuzzy brain and what I call the "drunk walk" which means any day I don't walk into a walk or fall over my own feet while standing still is a good day. I was also diagnosed with sjogren's syndrome and bursitis od the hips at the same time. I also suspect I have raynaud's. (I also have PCOS, endometriosis, and colitis. Yes my body loves itself.)

Today I've developed swollen armpits with hard lumps. So far two have come up and opened but my neck lymph nodes are also sore. Does this go with Lupus at all?

Fatigue

KHubbs108 — 2010-09-02T18:47:00 -05.00

I have been feeling weaker and weaker lately, muscle weakness and lack of energy. Today I walked down a flight of stairs and outside to my car, and then walked back inside up the flight of stairs. it was actually challenging getting up the stairs because i felt so weak, not just that my legs felt weak but also my stamina. at the top i couldn't believe how tired my leg muscles were. and then i just felt really tired, cranky and flared up with severe exhaustion again. i'm fighting off an infection so i guess that's why... but how can I go to work like this?

thanks.

What sends you into a flare?

lakelaxmom — 2010-09-02T17:04:23 -05.00

After playing chicken with lupus for most of my adult life, I've become mostly reactionary about dealing with being sick. I was officially diagnosed a year ago & am still learning how to be proactive about this disease. I'm hoping to learn from anyone who wants to share, what are some of the things that send you into a flare, in the hopes of learning more about my own self & this disease. I'm in one now & am not sure what brought it on!?

Thanks a bunch!

Back pain

kodiak — 2010-09-02T14:31:04 -05.00

I have had very bad low back pain for about 3 weeks now. The worst time is when I've been inactive (i.e. in bed or on the couch) and I try to get up or roll over. Mornings are worse. I am so new into my dx I just don't know when to call my doc. I walk every night 3-4 miles just to stay in shape. I feel pretty good while walking. I think there is some swelling above one of my hips. I am taking plaq. and atarax and Aleve. At night I am not sleeping well at all because I can't relax. My mind won't shut off and I am tangled in the sheets by morning. I wake up from pain.

If anyone has any suggestions I would really like it! I am really contemplating calling my doc today because the long weekend is coming up and my hubby is out of town til next Wed. and I've got 4 young kids.

Dentist

tadpol — 2010-09-01T23:07:58 -05.00

They were doing some caps and when they were putting on the temps they noticed that the blood was clumping. It was very weird considering that I am on a ton of asprin.

Has anyone ever heard of this?

Thanks!

Theresa

anxiety/palpitations

Duana — 2010-09-01T22:51:27 -05.00

does anybody else get palpitations ,anxiety/nervousness that seems to come on for no reason?i've been dealing with this as one of my major complaints for years.i've had cardiac tests and am on a beta blocker to control the palpitations.i take xanax once in a great while if i get really bad for the nevousness/anxiety but usually just suffer it out.i know xanax is not a drug of choice to make a habit of taking.

Headaches

jeepannabell — 2010-09-01T22:08:45 -05.00

I don't seem to see a lot of symptom topics on headaches. Are they a common lupus symptom?

I'm in the middle of a "flare" right now and when I feel like crap the worst of it is fatigue-headache-dizzy, I say that as all one word because they all seem to go hand and hand. The dizziness and headache have been really bad the last couple of nights. Anyone know of anything to help? Tylenol and Ibuprofen don't do squat! And I'm not on any meds (still undiagnosed and untreated).

painful joints but NO swelling

Duana — 2010-09-01T20:35:36 -05.00

does anyone else have painful joints but NO swelling?

History Repeating Itself...

Lupus444 — 2010-09-01T15:04:11 -05.00

It's been a rough week.... hard to understand because every week is a rough week without relief, lol but as per usual from the day I have been diagnosed with Lupus back in 83....without fail Labor Day weekend the WOLF comes out and decides to kick my butt! Every Labor Day weekend we would take the boat out to Newport and it would be a weekend of THE most unreal fatigue and joint pain. It seemed every Fall and Spring I was hospitalized.

I wondered how many of you out there have ever noticed a specific time of the year...season... that you were guaranteed to flare?

PJ

tingling in my feet and my bottom lip.

Duana — 2010-09-01T15:03:21 -05.00

i sometimes get a tingling feeling in my feet especially my left one.it is worse when i get up to walk,then it goes away.if i sit down and get back up it feels like that again or if i move my feet while sitting i can feel tingling sensations in my feet.this is not a constant feeling but happens once in a while.also,my bottom lip feels tingly sometimes.anybody else?what causes it?it is annoying.

flare up in right foot.

peaches35 — 2010-09-01T07:30:18 -05.00

This morning my right foot woke me up with a pain right under the skin all the way to the nerve. I tried to ignore it about 6am I had to get up an get an ice pack to put on it. For whom that don't know my lupus is right under the skin from knee down. It has never made it to my feet but it was just a matter of time. The only way how I know its a flare is because it felt like my legs did when they first started but without the spots. By looking it is know signs of it right now. But by touch and just feeling inside my foot I can tell. I haven't had a flare up in about a month my last one lasted from Oct. til July on my legs. Has one had a flare up just in one foot or could it really be something else?

dr said it sounds like lupus

pokey — 2010-08-31T17:16:13 -05.00

hi everyone! please understand this might be a long post. i just have always felt unwell my whole life.I have headaches,nausea,vomiting,hair loss,joint pain,fatigue,fever,chills,sore throat,pleurisy,brain fog,very bad memory and i go to the bathroom way more than usual

i have been having chest,breathing and throat problems for a few months now.i went to the urgent care on sunday to see what was going on they said i have pleurisy.the dr tested my sed rate she said it was 34.she was the one who mentioned lupus so im going this friday to see a primary dr to talk to him.i was on medical leave for a month went back to work now i have to go back on medical leave because it hurts to breathe and move around.

i know i cant work right now until i get somewhat better but i wish i could be at work right now.i love to work and miss it very much.my boyfriend and family are being supportive.

thank you for reading my post

Frequent urgent bathroom trips

loopymom — 2010-08-31T08:36:35 -05.00

I am wondering if anyone has to make sudden, urgent trips to a bathroom to tinkle during a flare. I have had to go a lot more than family and friends for years.

The joints and higher level fatique hit me 4 days ago. Two days ago the even more frequent bathroom trips hit. The need to go comes on suddenly! Today the red rings that I used to get on my arms and legs are on my lower abdomen. This is why I'm thinking it is part of a flare.

Darlene

Sweating?

MaryK — 2010-08-31T08:33:32 -05.00

Since "all this" has been going on I have a problem with sweating. No it doesn't drip off my head, but around the time (2 years ago) that all this started, I had to start using the Secret Clinical strength deodorant and really, it's not enough. I can ummm, smell my sweaty smell (tmi, I know) all day no matter what I'm doing. I sweat profusely all night long as well. I never really thought much about it healthwise (I think about it all the time for myself--cleanliness and Godliness and all that--see my vanity post lol), is this something I should mention to the doctor? It's getting worse, my husband now mentions to me that I might need to reapply my deodorant (is there a bright flaming red blushing smiley?) It never occurred to me that this might be related to everything else going on...

chest pain...pericarditis?

lemonmama — 2010-08-31T00:01:57 -05.00

Hey everyone,

Back in the fall of last year, I got H1N1 and then a week later I developed a very mild case of pericarditis. I say it was mild because they couldn't detect it except with an echocardiogram and the fluid was "tiny" as they put it. It didn't feel mild to me! It took 3 months to clear up - I was not diagnosed with lupus at the time and so I was only being treated with strong anti-inflammitory drugs.

Fast-forward to the present. I had a stomach flu (maybe? no one else has gotten it...) on Tuesday and have been slowly recovering from that. On Saturday afternoon, I started having chest pain. It's been slowly getting worse.

I didn't take my meds (Plaquenel and 400mg of Naproxen) on Wed or Thursday. I re-introduced the naproxen slowly since my tummy still hurts. Today was the first day of the higher dose (400mg).

So, my question is this: how long should I let this mild chest pain go on before I call the doc? Yeah, I know - you guys can't answer that.

How about this -- anyone here had multiple incidences of pericarditis? Any words of wisdom?

Thanks! It feels good to just to write down the timeline of stuff and how I feel.

Lupus Flare???

megan2011 — 2010-08-30T22:41:28 -05.00

So last weekend i did not feel good at all very very tired and did not want to eat anything... Well today my hair is falling out and my whole body is just killing me and when i was eating dinner tonight it was had to sallow bread and things like that. I also have 3 mouth sores in my mouth right now. So im not sure if im in a lupus flare or what??? thanks everyone Megs!!! GO BLUE

Anybody WITHOUT a diagnosis please reply.

Duana — 2010-08-30T21:27:08 -05.00

Anybody without a diagnosis of lupus, please reply. I would love to hear other people's symptoms that are awaiting diagnosis. Mine are chronic fatigue, joint pain (especially worse on one side of the body), memory problems, IBS, IC (bladder issues), tongue sores, insomnia, etc.

Question about Tempur-pedic

ynieves — 2010-08-30T16:27:28 -05.00

I was wondering if anyone owns a tempur-pedic mattress and if it is worth the price? Do they help with the joint pains? During my flare-ups I am in so much pain, it is difficult for me to move, and I'm unable to sleep becaue I can't find a comfortable position. Just wondering if this mattress really does help when one is in pain. I don't expect it to take the pain away but at least help with sleep and feeling comfortable.

Barrett's Esophagus

lupey4dogs — 2010-08-30T14:55:04 -05.00

Has anyone here on the board had difficulty with their esophagus? I've had mine dilated three times now - 8/04, 6/09 and 8/23 (last week). The biopsies taken from the last procedure (8/23) came back with a diagnosis of Barrett's Esophagus. Not good news. I was just wondering if anyone else has had difficulties with their esophagus/stomach lining.

Pulmonary Hypertension

Lupus444 — 2010-08-30T11:57:50 -05.00

FOr those of you who have been diagnosed with this I was wondering if you could share and describe your initial symptoms and your symptoms now if you would.

Thank You
PJ

For those who take Vicodin

Lupus444 — 2010-08-30T09:47:33 -05.00

I wondered if you experience rebound headaches when you take it regularly? As the med wears off I seem to experience a headache, which is odd considering it is a pain med. lol

The other thing that I have always noticed is that a lot of time when I take it...my right arm goes weak. Very strange...but I suppose if it is for some reason triggering a migraine with me that would be that cause.

So anyway...I found myself curious to see if anyone else has weird reactions when they take a Vicodin.

Thanks!
PJ

Excessive Hair Loss & Weight Gain

balistrb14 — 2010-08-29T13:31:17 -05.00

I know you get the hair loss with Lupus but it's like coming out in clumps now. And I've lost 14 lbs. in the last 2 weeks. I have been trying to lose weight and been watching what I ate but I'm afraid this is too much weight too fast. Anyone have any imput??

sore tongue

Duana — 2010-08-27T23:53:47 -05.00

does anybody else get sore areas on their tongue?sometimes there will be sore hard lumps on my tongue,then it gradually looks like the lump has turned into a raw spot and eventually goes away only to come back later.is it too much acid?i've had this since i was a teenager.doctor has no clue.is it autoimmune related?i would think the doctor could fill me in here.

the good and bad of medicines

bipolartony — 2010-08-27T20:31:06 -05.00

i seen the doctor today and he gave me two options: i have rheumatoid arthritis and might have medically induced diabetes.doctor said do you want diabetes or rheum arthritis? i was like what??? he said if u keep taking the prednisone you will get diabetes but ur rheum.arthritis wont hurt anymore... or you cant stop the predinsone and u wont get diabetes but u have rheum arthitis..... wth?? so i said i dont want diabetes and just give me something for my R.A does this sound funny to anyone?

My general fatigue poll...

grandline0312 — 2010-08-27T01:11:33 -05.00

Okay I realize that general fatigue is the common symptom of SLE and I know that Im not the only person who is always tired. My problem however is that I almost never go to sleep. Nearly every afternoon I have what my husband calls a "Winnienap", where i get under my covers for about an hour and turn over and just sorta watch the world go by. Its difficult because I feel like Im always tired. I can sleep ten hours and never really feel awake the next day. Its crazy. So Im just wondering how everyone elses fatigue hits them. Are you guys borderline narcoleptic or zombies like myself?

high serum calcium - hyperthyroidism?

DebraTX — 2010-08-26T22:11:33 -05.00

My rheumy is sending me to the endocrenologist because my blood calcium is still too high. I know that my lupus is affecting my kidneys. Any ideas what this is about?

bluish/purple colored feet and hands?

Duana — 2010-08-26T20:22:51 -05.00

does anyone else ever get blue to purple colored feet?

Unusual swelling of the lips and chin

pasqual — 2010-08-26T17:51:50 -05.00

I had a accurance of swelling of both jaws that lasted 24 hours and then my upper lip swelled up and then the lower lip a few weeks later. Has anyone had this happen that was diagnosed with lupus or is this something else? I'm getting scared to go out in public because I don't know when this is going to happen.

How do you know when you are in a lupus flare?

Duana — 2010-08-25T15:12:04 -05.00

This may be a dumb question.......but how do you know when you are in a lupus flare?What does it feel like?I know it's different for everyone but would love to hear from anyone and everyone.

Duana

High Blood Calcium

DebraTX — 2010-08-25T13:56:02 -05.00

Hi All,

My rheumetologist is sending me to the endocrenologist because of high serum calcium levels. Is this with hyperparathyroid issues? Has anyone else had this same experience?

Deb

why am I having petechiae

ami9342 — 2010-08-25T12:15:30 -05.00

I now have petechiae all across my stomach, my arms and my thighs, went to the doctor yesterday, he did blood tests which came out normal, how is that possible? what could be causing this?

Anyone having problems with hearing loss?

KHubbs108 — 2010-08-24T07:41:05 -05.00

For almost a year now on and off, my left ear feels like it is clogged with fluid and I cannot hear out of it for a few minutes at a time. It throws me off because I can't hear the volume of my own voice when I am talking. My primary care looked in my ear and it's not clogged, no fluid. just wondering if anyone else has had this experience.

Thanks.

--K

Abnormal feeling of skin on arms

peaches35 — 2010-08-24T00:55:53 -05.00

I went on vacation about 2wks ago. I put my sunblock on an hid up under a huge umbrella. I did go out in the ocean for awhile with my husband. Later on that day I notice my left arm skin felt funny thats the only way I could put it. By the end of the day I was getting patches on my right arm like I had an allergic reaction to something. Well my skin on my left arm still feel funny and the two patches on my right arm is still there they don't itch unless I rub on it. I have had patches like this before but only when I was allergic to something. It first showed up when I was taking sulfur drugs for my RA. The meds got change they went away. Now something is back I have know idea what it is. And lord only know what happen to my left arm. I can not even describe what it is. Its not raised like my right arm its under the skin but feel very funny. The outside of my arm skin is rough and feel 100% different than the inside of my left arm. Has anyone skin felt like this are is it just me. Don't forget I have lupus panniculitis I don't know what all its doing to my skin but I change the touch and look of my lower legs. But my arms don't look nothing like my legs. I just really don't know how else to tell you. Sorry!! Please forgive me for the ongoing stuff.

Could it be lupus? I need support

Heather13 — 2010-08-23T22:03:32 -05.00

Hello,

I have my first appt with a rheumy on Thursday. For the past month I have had fevers, joint pain and swelling, chest pain/back pain, muscle aches, headaches and migraines and extreme fatigue. I get a rash if I spend time in the sun on my arms. My hair has been falling out for about 6 mos, have lost weight and my appetite. I have a history of unexplained seizures, tachycardia and hyptertension (but I am very thin). Also I have Crohn's disease but this is completely different than anything I've experienced before. My labs about a week ago included a sed rate that was 21 and an ANA that was just above normal. CBC was normal.

I have been so sick and it's difficult to take care of my 2 young kids and work as a nurse. I have been reading your message board and would appreciate any support or words of wisdom. I am anxious about my appt, and although I don't really want to be diagnosed with another chronic illness, I am more scared they won't know what is wrong with me. Thanks so much for taking the time to read my post!

Does anyone have motor skills issues?

Aja — 2010-08-23T18:08:45 -05.00

Recently my boyfriend and I noticed that I have been dropping things a lot lately. At first I thought maybe I was being a little clumsy but now it is getting ridiculous. Not to mention the other day I almost fell walking up the stairs to my apartment. Has anyone else had similar issues?

ALWAYS INNER BODY ON FIRE

greyandamy — 2010-08-23T15:41:55 -05.00

Okay, is there anyone like this??

It used to be more like hot flashes, more doable. NOW it's eternal inward furnace, always. It can't be hot flashes from cdhange of life, as there's no stop and start. I would think that would be the same with any meds that cause hot... like steroids, morphine???

There's no temp on thermometer, in fact it's a bit lower than it used to be. It's not that the rooms are HOT or above average.... IS THERE ANYONE LIKE THIS? CONSTANTLY ON FIRE???

It's NOT my thyroid, that was checked...

seasonal