View Full Version : New here and need some help

11-04-2008, 07:42 PM
Hi guys. I will try to make this short and am hoping for some insight.

About 5 months ago I was walking to get coffee when I got an incredible pain in my lower back (thought it was an old injury), 10 min later it went away. Well a week later my left ankle hurt so bad like it was going to snap in half, I could not walk....in the morning it was fine. However later THAT day my right foot felt as though it was being crushed-30 min later it was fine. The pains continued to jump around my body from place to place and still does. I have never had a pain like this, it feels like a deep toothache pain that will just pulsate anywhere from a minute to hours. Well 3 days after the onset of this I noticed what felt like vibrating in my right foot that would come and go. Lately I get this in my left foot and it alternates from feeling normal, to vibrating to tingling. About 1 wk after the onset of the pains I noticed EXTREME joint cracking. I counted once 15 times in 10 minutes. Sometimes the same joint cracks over and over within a few minutes. Last night my pelvic joint kept poping in and out of place. When I roll over at night all I hear is my shoulders cracking loudly. Finally, over the past 3 months I have had non stop muscle twitches all over my body- I feel like a popcorn machine. My muscles now feel like the fibers are getting pulled and at times I get nerve pains. My hair seems to be coming out more, especially my eye lashes.

I have had so many blood tests, full body bone scan, MRI of head and spine. All that came back was compression on my c spine but drs say that has nothing to do w my symptoms- and are stumped

I also want to mention that over the past 5 yrs I have had bad pains left of my belly button that have landed me in the ER twice, but I was fine. I was dx with GERD 2 yrs ago out of the blue and cannot get rid of it. I have had migraines for yrs.I do not have a butterfly rash but for yrs I have had pink skin above my lip-like its stained. I have tried IPL, ligtheners and it just wont go away. Finally, when I am in the sun too long I get a rash that itches.

Sorry for the long post, but does any of this sound like lupus?

11-04-2008, 08:04 PM
Hi k2626,

Welcome. I'm Rob, and I was diagnosed with Lupus in 2004. I have symptoms that are very similar to yours. Especially those strange pains. I call them "migrating" pains, as they seem to move around my body in a random way. It's a deep, very odd feeling pain. Cracking joints, sudden tingling and stinging under my skin, patches of hair falling out, I have it all.

Your symptoms do sound like Lupus, so it is a possibility. I don't want to scare you. But you obviously are having problems, and you need to know what it is in order to treat it. We have many, many people here who have lived with, and managed Lupus for years. It's no picnic, but it's certainly not the end.

Do you have a Rheumotologist? They generally are the ones who make a Lupus diagnosis. Other members will be along before long to share their thoughts with you. Please make yourself at home here, and don't be afraid to ask any questions, or talk about whatever you feel you need to. I hope we can help you find the answers you need.


11-04-2008, 08:40 PM
Thanks so much for your reply- I REALLY appreciate it.

The pains are like nothing I have ever felt. It is a deep searing pain that will just pulsate a random body part, like my finger then go away after a few minutes then come back to that spot a few hours later or hit another part. Today it was my ankle, just quick pulsating deep pains on and off -would last maybe 30 seconds, then hit agani 10 min later. The pain is so hard to describe. It does not feel like a nerve pain though I get those too.

So my pains do sound like lupus pains? One thing to note is I dont have swelling anywhere or redness in my joints. The joint cracking is so odd though, I feel like my joints are falling apart.

I saw two rheum, but the blood work comes back clear. I am so lost. I have seen about 10 drs, and have had prob. 100 viles of blood drawn, MRIs, bone scans ( I thought I had bone cancer at first the pains are THAT bad)

Thanks again, I do appreciate you taking time to read and offer feedback

11-04-2008, 08:55 PM
Hi k2626,
Welcome to the site. My name is Kathy and I have SLE Lupus and have had it for most of my life. I know I have serious pain in my joints and right now it is affecting my wrists and knees in a bad way, but the pain lasts a lot longer then a few minutes. It sounds like you could have Lupus, because the pains can hit any part of your body. I hope that they can figure out what is happening with you. Please keep posting. Maybe Saysusie and Oluwa could give you more insite. I know that for the doctor to diagnose Lupus you have to meet 4 of the 11 criteria that the Lupus Foundation has outlined. I just hope that you can find out what is happening with you.


11-11-2008, 10:47 AM
Hi K2626...

Welcoming you with a big hug..hug...

I get shots, shocks or throbbing bouts of pain, here, then over there. Sometimes for a minute, times all day.

My roaming pain....I envision my antibodies running rampart in my body putting out flames in a muscle, in a vein, in a joint, in a nerve..our tissue....fires that do not exist, creating more inflammation...over reacting.

Lupus is just that, creates inflammation in every crack and crevice.

I have the pink stain above my lip. It was very pronounced years ago..look liked a strawberry Kool-aid stain. Try dabbing, press in lightly a bit of green corrector makeup on and apply your foundation over it...

As of late I have been using a line of skin care by colorescience. I have the malar rash and I am quite pleased with the results it has given me. I look fresh, not taunt or dry and evening my tone out and taming the red....

I am using the..
Pep up Gel
Pep up Pen.
Eye Lip Trio Corrector
Creme de la Creme Foundation
Compressed Micronized Compressed powder.
Lip serum.
Sunforgettable Powder, SPF 30

Again welcome to WHL...keep looking for your wellness

11-11-2008, 11:29 AM
Thanks so much for responding. See I dont have the typical rash and I am not sure my redish stain is due to lupus or not. I have had this for years. I have had IPL on it so many times and it may get better for a bit but it comes back, some days it looks worse than others.

I have not been dx for lupus and have no clue what is wrong with me.

My joints are cracking so so much and seems to be getting worse. My type of joint cracking is not normal and even drs have acknowledged that. I prob. crack over 150 times a day and it all started after my pains began back in June.

On top of this I have muscle twitching non stop all over my body which scares me more than anything else. I did have a clean EMG which is good but it still makes me worried.

How long did it take for you to get dx via blood work? Did it show right away>

Thanks so much

11-11-2008, 12:33 PM
Hi K2626..

What I recall....which I am sure there is more. Quickly, in brief...

I've probably been symptomatic since elementary..plagued with rashes and hives in 6th grade

In my twenties, nose ulcers, more hives, chronic fatigue. Told I ate too little, eat more meat. Shots of benadryl..started my trek on homepathic...

In my thirties, joint pain in knees and feet, more nose ulcers, more hives, face rash, which I thought was a cosmetic reaction. days in bed with sheer exhaustion, mental fog, eyes sensitive to light, two back surgeries, bloat.... Diagnosed with arthritis, costochondritis, pluerisy, depression, disc degenerative disease, spinal stenosis, hypoglycemic, food intolerance.

Forties...every joint inflamed, weeks in bed, unable to walk, turn a door knob...throbbing pain in my legs, vision blurry and dry, extreme sensitivity to lights and sun, face rash that wouldn't go away, extreme mental fog, hair thinned you could see my scalp, UTI, food stuck in esophagus, cervical spine surgery, protein in my urine ...Diagnosed with Sjogrens, SLE, Restless Leg Syndrome, GERD.

From my knowledge I was never tested for Lupus or any other until 2004...The malar rash was a big sign I guess. So all the pieces, all my aliments over the years completed the picture. And not a pretty picture....

I wasn't in any ongoing illness daily, the illnesses, symptoms before my forties. What I described over the years came in bouts...sick for a day, nothing for months.

I wasn't sickly...my symptoms were to me like a cold, got it, got rid of it and went about my day. It wasn't until I hit my 40's it all came at once and never left.

Most recent my cervical spine surgery with hardware in 2006, relocating in 2005 brought on the biggest relentless flare. I was ready to crawl into a hole and let shovels of dirt fill in the rest of the space...

Having Lupus, living life is a balancing act...no ones' act is the same, but we learn from one another here. I have learned oodles here..most of all finding my spirit when I thought it was lost is my greatest find here. Times it wanders off, but not too far from my reach.

IPL, lighteners I am assuming...cream? Maybe because it isn't a surface stain, but inflammation in all skin layers, deep. A scar, damaged skin...

With Lupus it makes us more susceptible to things...that have nothing to do with a diagnose...

Have you ever had an EEG or an EMG to assist in diagnosing the twitching all over your body?

Be well.

11-11-2008, 12:47 PM
Hi there. I had an EMG about 2 months ago for the twitching, it was clean. I may request another one next month as its really scaring me.

IPL is a laser, it goes deep in the surface, gets rid of freckles,capliaries etc.

I just dont know what to think. Maybe lyme, maybe lupus---I really dont get sick though> I did come down with gerd out of the blue 2 yrs ago which was hard to get under control. I just dont know and am at a loss....

11-11-2008, 01:19 PM

Laser..that can be very skin damaging, can work the reverse. How many times have you had it applied.

Doesn't it hurt? Such stress on the body, even if it is a small area it can cause a flare. It happened to me when I used laser for facial hair reducer...

Doesn't IPL say it isn't permanent, and it just reduces or reduces the appearance...

If you suspect an autoimmune disease I would forgo the IPL and opt for green corrector makeup. With Lupus our skin is so sensitive, easily inflamed.

With GERDie...have you been tested for H. Pylori. I had that, diagnose and treating it provided much relief but unfortunately I still get the inflamed radiation chest and back pain when it gets out of control by no ones fault but my own. Then I have to up my Protonix dose...

Is an EEG possible to have conducted?