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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

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

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


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
Easy bruising
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!


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

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

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