Please share your symptoms. A friend who has Lupus tells me my symptoms match Lupus. I also have a condition similar to Parkinson's.

Would like to compare and see if what all of you are going through is similar to what I am experiencing. My list of symptoms is very long, and growing. There's likely two or three things at work here, but one may be Lupus.

Any symptoms you would like to talk about would be greatly appreciated.

Take Care and hope you all are doing well.
Sincerely,
Caring

About six years ago I began to have sleepless nights, extreme fatigue, the bones in my legs ached. I thought it was stress from my job. It got worse and I went to work some days without any sleep at all. I finally told my family doctor that something terrible was wrong with me and it wasn't just stress. After many tests and needle pricks, I was diagnosed with Lupus.

I take Relafen and Methotrexate for the Lupus, plus Fosamax for my bones. I am also on high blood pressure medicine - Accupril and Norvasc. I take an interic baby aspirin every day as well as Citracal with vitamin D. I don't like taking all that medicine, but guess I will have to for the rest of my life. I have been able to cut my Relafen in half and that is always good news.

My rheumatologist says that I need a nap every afternoon or that I should at least lie down and rest for at least 30 minutes.

The best advice I can give you is: Don't give up and pick the very best rheumatologist you can find. I have an excellent one; one who will listen to me and seems genuinely concerned and wants to help me.

Hang on. Help is on it's way!

Irish

Thank You Irish,

Still working on getting a diagnosis. Any diagnosis. Right now it's all just a mystery.

Anyone else who would like to share, I would really appreciate it. Thank you.

Sincerely,
Caring

Caring,
I'm not sure when mine all started for sure....I remember a lot of fatigue, which I blamed on my worsening IBS (3-4 yrs. ago). Then stiff joints & muscles, some shooting pains, & worsening carpal tunnel (I don't have a job that would account for that), and major memory blurps ........This I blamed on menopause and getting older. I never mentioned it to a Dr. Two years ago, I got a severe rash all over my upper arms & chest. First derm said it was from the sun, 2 months later, second dr. said it was hives, and later when it disappeared except on my upper chest, then he said it was permanent sun damage. Also noticed some spots on my face that kept peeling and a sore on my lip. Same derm said they were pre-cancerous and used liquid nitro on them. After a while healing, some scarring and the sores still there, then he said he didn't know what they were, but not to worry, they weren't cancerous cause they would have disappeared from the nitro. (he never did a biopsy). My dentist started to be concerned about some sores that I had in my mouth too. They weren't painful & I didn't even know they were there. He finally came up with some hard to spell, AI diagnosis. I also started noticing that it took my skin so much longer to heal - again I blamed it on age. Finally last Dec., I woke up several mornings in a row with severe pain from my fingers all the way to my elbows. It took a long time for it to go away, and my fingers stayed numb for a couple of hrs. I went to see the Dr.(internal med.) and he gave me a prescription for strong ibuprofin, told me to wear my walmart braces, and if I didn't quit smoking that they would have to amputate my hands. In the meantime, I had my annual pap with a different dr. From some research on the internet, someone suggested a thyroid problem so I asked her to check that - negative. They did find a problem on the mammogram & I had to go for more tests. Before I got the results of those, I really got scared cause my fingertips started freezing, turning white & blue with shooting pains. I braved the Doctors' wrath and went back to see him. He proceeded to holler at me for 1/2 hr., even though I was crying. Besides being stressed out from all the symptoms, I was also very worried about the results of the mamo. Finally, with my coat already on and standing in the doorway, I got the nerve to issue a subtle threat............I said that I understood that the smoking was a major problem, but just so he wasn't blaming all my symptoms on that when there really could be an underlying problem that he was overlooking. Lo and behold.............he orderd some blood tests. My ANA was strongly positive, he ordered more specific tests and they were negative. (By the way, the mamo tests were o.k.) I went to a Rheumy then..........my tests hadn't changed, but he diagnosed me with Raynauds, Rheumatoid Arthritis, and a light mix of Lupus. He started me on plaquenil, adalat, & vioxx. (I refused to go on the prednesone) I didn't really like or trust him, so 2 months later I went to the Mayo Clinic (I'm from MN). They added the diagnosises of osteoarthritis, carpal tunnel, vascular occlusion (narrowing and/or blockage of the vessels) in my palms, and evolving/mixed connective tissue disorder. By this time, more of my blood tests had turned positive. I've also had some sores in my nose and ears. Since that time (May 1st), I have been busy trying find another Rheumatologist. I am on 2 waiting lists......one says it will be 6-12 months before I can get an appt. and the other won't give me a time. I don't know what I'm going to do...........my symptoms keep changing, and besides needing to be monitered, my prescriptions will run out!!
Whoa............ sorry about all that whining & complaining. I'm not at my best lately and my sharing turned into THAT!
You never did mention specifically what your symptoms are and what you're trying to do to get them figured out. Hope you're making some progress & will be waiting to hear from you. I promise, I won't respond with another 2 page post. (my fingers were only half crossed)
Take care, Ann

Thank you for telling your story. I've been having a mix of problems. This all started with a chemical poisoning which made me chronically sick. Colds, breathing problems, sensitivities and pains which have ranged from mild to severe on a day to day basis since the chemical poisoning. In the last few months, the pains have become worse, and worse.

I've also developed severe tremors that I need to take medication for. Also, my feet and hands are red and sweaty all the time. They feel like they are burned or something.

I get these fevers that last a few minutes to half an hour, with my face hands and feet getting really hot and even redder.

Sometimes a very sick feeling comes over me, usually daily, and I feel like I'm going to throw up, I get dizzy, so tired I could almost pass out, and usually sweating, for no reason at all.

Blood tests to this point are within normal range. I am trying to get in to see a rheumatologist for the terrible pain. MRI was inconclusive so they need to do another one with dye.

I can be freezing cold one minute, and so hot the next that I'm sweating. These are most of my symptoms. I'm also very weak and wobbly and exhausted.

So sad to hear about your terrible experiences with your doctors.

Right now I'm seeing a neurologist, and my regular MD who are both really good. They will likely order another set of blood tests soon to see if anything has changed. Still need to see a rheumatologist though.

Some people suggested I check out this site for information, including someone I know who has Lupus and was exposed to the same chemicals as I was.

Thank you all for your stories. Anything else you would like to share would be appreciated.
Sincerely,
Caring

Hello everyone. I have similar symtoms with you guys. Over the course of three years I have had a few surgeries. One right modified neck disection for 7 large lymph nodes(benign). Still don't know what caused it. My symtoms started as achiness, and other the years evolved into pain. Three years now, my sed rate and CRP is still high and have a positive ana. Most of the time my hands and feet swell up. I have had numerous white blood in my urine(possible bladder infections), yeast infections recurrent, problems breathing(on Xannax, no relief), muscles burning in arms and legs, recurrent skin rashes on chest(fungus,ezema ?), fevers, redness on face, high blood pressure, am always sick in stomache, always tired, and was recently dx with carpal tunnel(no known cause)and TMJ. As for red and sweaty hands and feet, I have had problems with that too, but I don't know what it is. By the way, my daughter was dx with lupus a few months ago, but her only problem now is joint pain, achiness, sinus infections, TMJ, and severe fatigue. Doc said it's still developing. Take care.
God bless
Karen

[This message has been edited by Karen-kay (edited 07-13-2001).]

[This message has been edited by Karen-kay (edited 07-13-2001).]

In 1992, I started experiencing a lot of fatigue and mild joint pain. For 7 years, I went from doctor to doctor who diagnosed me as "depressed". None of them ever did blood work. I guess they just pegged me as "depressed" because I am female.

I got married in 1996. In 1997, my symptoms got worse. I had night sweats, insomnia, extreme fatigue, severe joint pain, low grade fevers and I felt like I have the flu almost all of the time. I was working full time and missed 3 weeks of work because I had "walking pneumonia" and I couldn't get rid of it.

Finally, in January of 1998, I went to my mother in law's internist and the first thing he said was that he wanted to check me for lupus. He asked me if it ran in the family, and as far as I knew then, it didn't. All the thyroid tests, etc came back normal. But my ANA came back positive at 320 and I had an extremely high titer for the Epstein-Barre virus. I was sent to a rheumatologist who diagnosed me with SLE in March of 1998. I still have many of the symptoms. I get tired very easily. I have terrible hot flashes. I run a fever 90% of the time. I have had to quit work. I nap practically everyday. If I don't pace myself and rest, I get very ill and may spend 3 days in bed.

I think the key is finding a good rheumatologist, Caring. And then look for a support group in your area. Lupus Foundation of America usually has a group in almost every state, but some groups may be a long drive from where you live if there is not a branch in your area. I have made some wonderful friends through the lupus group here in Mississippi and it is so nice to have people who understand exactly where I am coming from and what I am going through.

I wish you luck Caring. Keep me posted.



------------------
Measure your successes by what you gave up to achieve them.

Blood tests came back normal! This is good news and bad news, because we still don't know exactly what is wrong with me.

My lung doctor who ordered the tests was quite surprised because he thougt I must have an auto immune illness with all my health problems and symptoms, some very strange one's too.

Just saw my Rheumatologist for the first time, and he believes I may have a couple of things going on. Considering my blood tests came back normal, they are ruling out Lupus at this time, but he wants to monitor this to get a better idea of exactly what is happening.

He said one of the causes of pain in my upper body is likely nerve damage from whiplash. He said this would not account for many of my other problems though, so we are dealing with a few different things here. He wants me to take Neurontin to see if this helps my condition. Meanwhile, I had an abnormal MRI of the brain, so I will find out in a few days if there is any connection or if this is another unrelated problem.

Someone I know who has Lupus, was surprised the blood tests came back normal, as were all my doctors and I. She was pretty sure that I had Lupus, because we have all the same symptoms, and she is still wondering if for some reason, nothing is showing up in my blood just yet.

I will let you know more as I find out more. Thank you all for responding. Sorry to hear about all of your terrible ordeals.

Take Care all.
Sincerely,
Caring

Hello Caring
I would like to share my story as well. I was diagonosed with sjorgens about a year and and half ago. I can even remember the day I got very sick. It was Dec. 31 2000. I develop a bad case of the flu. Caring, I was so sick I thought I was going to die. A few days later I developed lesions on my finger tips, they felt like sores.

I also had muscle aches and bearly couldn't walk. I was 22 then. I started to feel alot of pain on my sides. There were times that every time I try to walk it would hurt so bad.

I went to the dr and like Ann, many dr had no idea what was wrong with me. They ran blood test and they told me that I had a rare form of hepatitis, and I had syphllis. That same week they ordered the injection and drawed more blood. When the reults came back they were all normal, no heptitis or syphllis. Mind you they were going to give me the shot the following week.

I spend 5 months having dr's telling one thing and saying the next.

In the meantime, I was feeling all the symptoms you have been feeling. I was so stressed and scared, which was not good for me. Finally I was sent to a rheum who diagnosed me with sjorgens. I currently looking for another dr opinion. I am currently on Prednisone which I just decided to take. But I am so afraid of the side effects. But thanks to good people on this message board I let my doctors know. Please by all means, go see a rheume and take care yourself.

Recently there was a posting for an update on health boards about a women who actually dredded prednisone. Her posting is called "Ive gotten results with meds" Please read her posting which she list vital inforamtin about medications. I dredd being on prednisone and thanx to her I could go to the dr and metnion other wise

best of luck...

You know, it's sort of a weird thrill in a way to try to think back to a year ago when I had all these symptoms, because the antibiotics I take and the supplements have changed my life so drastically for the better, it's amazing to look back (and scary).

Lupus:

Hypothyroidism
Extreme fatigue
Sleep problems
Weight loss
When I got a flu or cold it was really intense and hard to kick
Lumps on bones
Inflammation of lymph nodes
Easy bruising
Very swollen fingers
Cold hands (Raynaud's)
Swelling on bottom of feet, in knees, etc.
Muscle weakness, separated shoulders
Constant Nausea
Chronic Tendonitis
Easy soft-tissue injuries/sprains
Water/swelling in joints
Hair loss
Rashes
Easy bruising
Fevers
Vasculitis
Headaches
Brain Fog
Environmental/chemical sensitivity
Food sensitivity/digestive problems
Candida/yeast infections
Dry eyes/Sjogrens/eye infections
Wounds/cuts that don't heal fast enough
Heart palpitations
Mouth ulcers/sores
Sores in nose
Abnormal pap smears from inflammation
Slow hair/nail growth
Mood swings/depression/irritability
Difficulty speaking/finding words I knew
Kidney disease/blood in urine/foamy urine

I'm sure there's more, but that is plenty for now.

The worst part of Lupus was the fact that not one rheumatologist knew of a cure, just how to poison me and laugh at me when I found a treatment that I wanted to try that wouldn't poison me any more. Well, I told them c-ya and got help from my MD and now I can say I lost most of those things listed above, and without the side affects of toxic drugs. I still have to eat really well, rest a lot, avoid stress, and not take my gain for granted because lupus likes to try to make a comeback if let your guard down. But at least I know what I'm fighting and how to do it right, Praise God!

Sarah

[This message has been edited by real67grl (edited 09-08-2001).]

[This message has been edited by real67grl (edited 09-08-2001).]

I am amazed at the similarities in our stories! I was diagnosed 4 years ago with breast cancer (stage 2) and had 6 months of chemo, 2 months of radiation and continue to take tamoxifen for the breast cancer. I was very ill during my chemo and experienced fever, joint and muscle pain, extreme fatigue....don't know if I would do it again.

I never got my strength back and the fatigue is depressing. I am an elementary music teacher and have always been very "perky" and energetic. I sometimes wonder if I want to continue with life like this, not that I have a choice!

I assumed that these symptoms were just continued side effects from all of the chemo. But, instead of getting better, my health has continued to decline. I have 2 children (ages 8 and 11) and my husband is a minister. I'm only 40 years old....but feel about 80!

I don't have the "butterfly rash" but do have

EXTREME fatigue (sometimes I just can't lift my hand to my mouth to eat! or take another step)
SEVERE joint/muscle pain (was diagnosed in May with Fibromyalgia by my oncologist)
LOW grade fever almost all of the time
JAW pain, which has been diagnosed as a TMJ disorder, caused partially by the LUPUS, for which I am having surgery in December. I cannot open my mouth very wide and can't chew anything of substance. (I'd LOVE to have a nice juicy filet mignon!)
RECURRENT bladder infections
BLISTERS in my mouth, under my tongue or on the roof of my mouth
WEIGHT gain of about 15 lbs in 2 months!
SWELLING HANDS AND FEET from fluid retention
DEPRESSION on those days when I hurt so much
SLEEP problems (frequent waking)
NIGHT SWEATS (which I thought were just from the tamoxifen)
SPORADIC menstrual periods (which I also attributed to the breast cancer chemo and tamoxifen but now see as a possible link to the Lupus)
TERRIBLE HEADACHES (sometimes migraine and sometimes Lupus headaches, depends on the weather and my fatigue factor)
LOW BLOOD SUGAR (hypoglycemia - my brother is diabetic)
GERD (gastro esophageal reflux disease)

I have good days (criteria for "good" has changed, I guess) and bad days. ON my "good days" I usually overdo it so then I have a string of "bad days" to follow. I haven't found my limit yet - or maybe I just ignore it?

My doctor has suggested that I take a short "power nap" in the afternoon but I haven't given myself permission to do this yet, even though my principal HAS! I want to try some gentle stretching (Yoga?) to do in the middle of the day, too and follow that with the power nap. I know I MUST find the time to do it!

Sometimes, I consider trying to get disability,even though I LOVE my job, because I feel guilty for working with other children and using up all of my energy - then having nothing left over for MY children!

Just grateful to know I'm not going crazy. I'm sorry there are so many of us "lupies" out there - but thank you for sharing YOUR story which helps the rest of us know we are NOT ALONE!

Thanks!

------------------
Rhonda

Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."

Hi, Rhonda, I just remembered another problem I had for so long, the TMJ you mentioned. That's amazing, I never realized how many things were from the Lupus. I know how much it stinks not to be able to chew, ugh!

I did find a lot of relief from it by doing what it recommended in my health book, really did work:

Take a good dose of calcium/magnesium/zinc before bed,
(except I think Calcium only absorbs 300-500 mg at a time at most, so maybe take some in the afternoon and the rest at bedtime) - this relaxes the muscles. Additionally, vitamin C, Boron, and vitamin D help with calcium absorption considerably. Taking iron at the same time reduces calcium absorption, though.

Additionally (and very important), avoid all sugar and sweets, chocolate, etc, after 5 pm. Sugars reduce the amount of the minerals that allow the jaw muscles to relax, and cause you to tense the jaw during sleep and tightens up the spasms, ouch.

Maybe you can try these things before getting surgery and see if they help. I used to have to have my chiropractor put his fingers (gloved) back inside my cheek to try to massage the spasms out of my TMJ, but nothing really helped until I took the vitamins and avoided the sweets.

Take care,

Sarah

Hi RhondaG, when I read what you wrote about your symptoms I was stunned! I was diagnosed with Lupus when I was 16, I am now 24. The Rheumatologists that I have seen do not agree on the diagnosis, most say its non-specific connective tissue disease because I never had an elevated sed rate. However my ANA has always been very positive and at one point was 6400! I have had the butterfly rash, extreme fatigue, knee and hip pain along with many other symptoms. Six months ago I was diagnosed with GERD. I have been diagnosed with fibromyalgia, and most recently with ( last week) degenerative disk disease and disk bulges in my lumbar region. I also had a kidney infection at the same time and had to have a CT scan because the MRI showed abnormal lymph nodes in my abdomen(they say this is coming from the kidneys). I have been very depressed and wondering if this is all related to the Lupus. When I saw you had many similar problems it gave me hope and a deeper desire to determine how this is all connected- I have felt a bit crazy lately and guilty for being out of work. Oh, I have also had swelling in my ankles and was not sure if its from the back or kidney problem. Anyway, thank-you for your message and I will pray for you and everyone else that is going through this- it is so difficult.

God Bless,
ROSICOLE

Well here is my latest diagnoses. Early stages of Rheumatoid Arthritis, though nothing is showing up in blood tests yet. Asthma, Allergies, Reactive Airways. Dopamine Responsive Dystonia. That's about everything we've been able to come up with so far.

Many symptoms could be related to the Dopamine deficiency, but there are others which I still wonder about, and may never really know the cause of, or may not know for several years.

I will pray for all of you, and drop in from time to time. Take Care now.
Sincerely,
Caring

Ive been looking thru the symptoms everyone has. I have the following symptoms:
Pain in my joints, My joints pop (My big toe pops every time i move it), my legs go to sleep and when they are "waking" its almost umbearable, I have TMJ, MY ears feel like they are stuff w/ some kind of dryed out foam, I have lil bumps that appear on my arms and legs, my hands and feet are usually ice cold (my b/f wont hold my hand at times, because they are so cold).. I bruise easy.. my legs and arms are always bruised. Im not sure about the butterfly rash.. my face is red but its not as bad as the ones that i found when googleing ... is there different extremes to that?

Hi. I saw your post & wondered if you'd encountered any info on the MULTIPLE kinds of rashes that may be seen in lupus, beyond the best-known malar (facial) rash. FYI, I'm not suggesting you HAVE lupus, by the way! Only qualified drs. (rheumies & dermies, etc.) can make that call, and I'm just a patient like the others here.

I wanted to ask about your "'lil bumps". For years, I had recurrent "big bumps" (papules) that looked like mosquito bites on my arms & back, but they didn't itch. Then the bumps started expanding into almost perfect circles, with raised red rim & clear center. I felt lousy as the rash came on: fatigue, joint pain, low fever, monster headaches, back pain, urinary & GI problems, etc.---then, finally, unremitting anemia, too.

Little did I know that I had one of the lupus "subsets" = SCLE = subacute cutaneous LE. It's thought to fall between "discoid lupus" (DLE) and "systemic lupus" (SLE). At its worst, it can be fully "systemic" & can bring on the full range of SLE problems. Overall, though, it's thought that SCLE has lower odds of the worst SLE problems (kidney, CNS, etc.) And like SLE, it can also remain relatively mild, or fall anywhere in between.

I had the "annular" (circular) form of SCLE rash. There'a another form called papulosquamous, that looks like psoriasis but isn't.

My ANA was unrevealing throughout. Here it turns out that in this subset, ANA can be negative much more often than it is in SLE. My anti-Ro did turn positive (anti-Ro is the antibody most associated with SCLE).

A teaching hospital rheumie & dermatopathologist provided the answers I'd sought for so long.

So.... would love to hear more about your rashes, etc. Plus, do you have any suspicion that you are photosensitive? For me, early on several months would elapse between my being in sun & the appearance of a rash; but later on, WHEW---I got the skin reaction & felt lousy much faster.

Have you seen a dermie? A rheumie? Had basic bloodwork done? Had specialized bloodwork done?

Anyway, just some thoughts, for what they're worth. Best wishes, Vee

I have felt crappy for a while. I had a baby Feb of 2005 and developed HELLP. Almost died they say. Haven't felt good since then. Kept going back and forth to the doctor and got brushed off. Went to Nashville for a family trip and ended up in the hospital with an unknown illness. I couldn't feel my arms or legs and was having diarrhea every 20 minutes. SEVERE abdominal pain. Noone ever came to a conclusion. Went more times to the doctor, finally one doctor order a rheumy profile. Came back positive ANA. Sent to rheumy doc. He repeated the test and 40 more. ANA was real positive and sed rate was off but everything else was fine. I have had a lot of bad things happen to my body here lately. I was diagnosed with raynauds phenom.
Here are some symptoms, maybe you can shed some light:
my hair is coming out (but not in patches, all over)
nausea and diarrhea (already diagnosed with IBS)
extreme muscle weakness especially in my arms and legs
cramps in my legs and especially in my arms (feel like they are drawing up)
bad shoulder pain (discovered a knot there)
extreme fatigue
have on and off abdominal pain
my hands and feet go to sleep, feels like a crawling sensation on my face and hands and feet.
headaches
have cramps in my hands and all veins are visible, weird
feel foggy headed and have dizziness
been diagnosed with orthostatic hypotension. I could go on with symptoms but can anyone shed some light?

It just makes people feel better to tell their story and have someone listen to them without judging them.

My symptoms: Not to say these are lupus symptoms, they are just my symptoms- I am not diagnosed

Inflammation in my chest under my collar bone area (chronic and on going)-deep down inside you can't touch the pain on the outside, when it is bad it radiates to my back

Mouth sores occasionally

somewhat of a sensitivity to sunlight(I get red spots on me that go away when I come in and sometimes I feel bad after being in the sun, but not always).

occassional pains I have had-jaw, hip

Migraine headaches

Overactive bladder

Mono in the past- and I am allergic to sulfa drugs (these are not symptoms, but I am curious to know if anyone else has them).

I get red under my eyes and accross my nose when I feel bad, but it is not a raised rash it is just slight reddness.

I have a postive ANA and a very high single stranded DNA, but the single stranded DNA has no significance according to all my Dr.'s

My hair is coming out, but I suspect it is from the topamax I take for my migraines

What else, I have hypothroidism. Can't really think of anything else besides fatigue and weak a lot but rest and aerobics helps that. My symptoms could be a lot worse compared to everyone else's, but nevertheless they have been hard to cope with since I have always taken care of myself.

You know so many people have so many different symptoms, but one thing I know about doing research on this disease is that many people have it along with other things.

God Bless You

Symptoms, huh? There were so many minor ones over the years that went unexplained, but that I truly believe were the beginning of a cascade of problems that ended up with the lupus diagnosis. Stuff started happening at least 15 years ago, in my early 20's. Things that taken alone, would never have gotten me diagnosed with lupus, nor do I believe I actually had lupus at that time, but that my immune system was having all these small malfunctions and slip-ups before the big whammo actually showed up.

-Bouts of weird urinary incontinence, starting my early 20's (I have since learned that there is something called lupus cystitis that lots of women with lupus experience).
-Also since my 20's, this electrifying shock feeling that shoots up my backbone, through the neck, to my head. For maybe 15 or 20 seconds I feel semi-paralyzed in the shoulder, neck and head area, barely able to move or speak, and then it passes. Happens only a few times a year, but totally freaks me out.
-The feeling of a lump in my throat that wouldn't go away until I was given a steroid spray. Was told that my throat was inflammed and swollen, which made it puff out and feel like I had a "lump".
-Strange TMJ problems. One day I began to feel my jaw begin to get a catch in it while I was doing normal things like eating or talking or yawning. Just a passing second or two when it would seem to get a catch in it, but then it would close normally. This went on for some time until one day it got a catch and just stayed locked open. After some minutes had passed, it just released and allowed me to close my mouth. This began happening with increasing frequency, sometimes staying locked open as much as an hour or more. I was so afraid it would happen when I was at work or in public. Once, it did happen while I was at work, but I simply went to my cubicle and stayed at my computer with my back turned until my jaw released, so no one saw it. Went to the doctor, all they said was the joint was inflammed, did I grind my teeth? Nope. This stopped happening as mysteriously as it started. Also, sometimes when I take my first bite of food, I get these shooting pains in my jaw that make my eyes water. Have to stop chewing for a few seconds until it passes.
-Strange nosebleeds suddenly started about 10 years ago, when I had never had a nosebleed in my life. Just as suddenly, they stopped.
-Small purpleish things that looked like blisters or warts that rose up on my fingers. Seemed to remain more under the skin than on top. Looked like they had blood in or under them. Things took forever to go away.
-Little red and/or purple blood dots under the skin. Large patches of these would appear out of the blue. Thought they were bruises, but knew that I hadn't done anything to bruise myself.
-Weird facial numbness
-Uncontrollable muscle twitching
-Whole body itching, especially the knees and feet and some anal and vaginal itching. The anal stuff almost drove me crazy, but want to know the most maddening itch of all? My EYELASHES itched like crazy. Wanna see me scratch my eyeballs out? OK! LOL
-Large, swollen lymph nodes in the head and neck area. Doctor told me I had a scalp infection because of the itchy, fiery red scalp and hair loss I was experiencing, and that my lymph nodes were swollen in an effort to fight off the infection. Took a round of antibiotics, had no effect. Shortly thereafter, I learned I had lupus.

And of course, all the other stuff: bone and muscle aches; stiff joints; mouth sores; inflammed ear canal; itching, burning scalp, heavy "lupus dandruff" and hair loss; permanent rashes that appeared after relatively short sun exposure; red rashes on my face, arms, chest and back; unexplained fatigue, especially after spending time in the sun; gastrointestinal problems and rectal bleeding; slow healing....

I must be forgetting something, but I'm sure I've written too much already!

Aquanegra, That one thing you wrote, about the electrified feeling zapping up your spine... Did you feel pain with it? I had it, too, sometimes with pain, sometimes without. Sometimes I thought I could even hear a ZZZZZTTTTT sound as it was happening.

I share this because YOU brought it up. :D It was so bizarre that I never told anyone, not even my current rheumie, the one who really knows what he's doing.

Hope you're doing well. Take good care, Vee

Vee, yes, it is very painful when this zapping thing happens. I feel really weak and shaky when it subsides and want to just collapse. Makes you think of those people in the movies you see getting shocked during torture, how they howl for a moment and when it stops, all they can do is just fall into a heap on the floor. Only it seems like the power of speech leaves me for those seconds. It is almost like someone flipped a switch and turned the electricity on and tried to fry me for a few seconds, lol. I can laugh now, but at the moment it happens, it is not funny at all. I have heard of only one other lupus patient who shared this symptom, it is so strange. Now I know another, you!

I have the shocking feeling. It happened when I would look down. I was told by the Neurologist it is called L'Hermitts or something like that.

I never knew it had a name, now I am going to look that up! Thanks, EStevens!

Utter fatigue (not from not getting enough sleep or just overdoing it). It's like being hit by a truck and having the flu at the same time. Sometimes just going up one step can be a big project. It can feel like someone poured gallons of lactic acid into you (the way it feels when you work out too much & your muscles get all sore)
Painful, stiff joints - sometimes it could be in one spot, other times it feels like it's in every joint in my body
Swelling in joints
Hives for no reason, or even hives where something inside my body doesnt feel right (I've had times where I felt a discomfort in my kidney areas and would get hives on my skin in that area). The hives never seemed to correlate with anything I ate, or showered with, or washed clothes with.
Low grade fevers
Sudden nausea
Vomiting & didnt know why
Vision problems (like auras, visual disturbances, ear ringing, etc...)
Slight tremors at times (seems to be worse when I have alot of pain)
Butterfly rash across face
Other unexplained rashes on my body that went away on their own
Memory problems
Confusion and/or feeling like you are in a fog
Extreme sleepiness
Feeling sick after being out in the sun
Hair loss ( like just touching my hair or even eyelashes would case a bunch of hair to come without feeling it. hair would be all over my bed, all over my office chair, ickkk)
weird laryngitis without having a cold
have had tenderness under my ribcage right over where the liver is
Someone else mentioned they felt as if their bones hurt.....I know this feeling as well. It feels very deep...like Ive had this feeling in my lower legs before.
brief, sharp stabbing, knife-like pains in my chest
sores in my nose.....

and some things i cant remembeer at the moment....

All this over 17 years & i've only had 1 ANA test about 10 yrs ago that had an elevated titer. Other than that, everything supposedly comes back normal all the time. Even when I have very clear swelling & get some of the tests for inflammation, even they come back "normal"....I wish docs would give you all these tests when you feel normal, then test again when you're in a terrible flare and compare the two. Im sure what's considered "normal" is NOT normal for everyone