What were your first symptoms?

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king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/2/2008 10:42 AM (GMT -7)   
Hi guys. As some of you may know I have been jumping around the boards with my problems that started 3months ago. It started as severe migratory bone/joint pain (sometimes pulsating other times stabbing), EXTREME joint cracking (count 15 times in 10 minutes-prior to this I never had cracking joints), buzzing feet. Now the past 2 wks I have been getting muscle twitches all over my body.
 
I have had TONS of blood work, all okay except slight low D. I had an MRI 1.5 yrs ago for migraines and it was fine, my current neuro said no need for another one (though I did not have the symptoms I have NOW--so going to get yet another opinion on another MRI-also never had spine done), bone scan, saw two rhuem said I was "fine".
 
So I am still hunting for the cause of my problems. I find it odd to have all of my symptoms as they dont seem to match up to anything. I was tested for lupus and had my sed rate, ana and nuc test which came back fine.
 
What were your symptoms and does mine sound familiar?
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no diagnosis for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of August-muscle twitching throughout my body. 
 
 
 
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/2/2008 10:52 AM (GMT -7)   
Hi King:

My first symptoms were a malar rash on my face. I had a rash on my joints and sides. I would get the rash whenever I went out into the sun. I had fevers, fatigue, joint pain, I felt like I had the flu really badly. After that I developed anemia and low platelet counts. My ANA became positive and I had a positive Sed rate. I had pericarditis and pleurisy and I had GI issues.

I would suggest you look at www.lupus.org you will find the 11 symptoms of lupus you must have 4 out of the 11 symptoms to receive a dx of lupus. Lupus is very hard to DX. I've had lupus for 20 years I didn't get a formal DX until 13 yrs later. I also have RA, Fibro and recently I've developed blood cancer.

I would ask for you GP to send you to a Rheumy it wouldn't hurt to see one. Wishing you the best.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/2/2008 11:33 AM (GMT -7)   
Wow Barbara, you have been through a lot--I am sorry. You must be a very strong woman!

I have been to two rhuem, one said I look fine, it must be stress...and the other said maybe just a temp. infection. Basically neither had a clue. They looked at my prior blood work (ANA, nuc, sed rate, cbc) which was all fine and hence said I was fine.

I feel hopeless and that I am never going to get a dx. The pain is bad and symptoms getting worse.
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no diagnosis for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of August-muscle twitching throughout my body. 
 
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/2/2008 1:25 PM (GMT -7)   
Hi King,
 
Your symptoms sound like lupus, but also Fibromyalgia. I'm dealing with widespread pain as well, which I thought was joint pain. We did a bone scan and my joints are beautiful.  No issues at all.  Turned out, the "joint pain" I was feeling is actually muscle, ligament and tendon pain that surrounds the joints.  It's impossible to tell the difference between joint pain and the surrounding tissue pain.  So, my Fibromyalgia is the culprit, not my lupus or arthritis.  Lupus and Fibro symptoms are almost identical.  The main difference is that in Fibro, your blood work will come back 100% normal.  Sound familiar!!!???  My blood work came back fine too.  IBS is very common in Fibromyalgia as well.
 
I hope this helps.  It might be the answer you're looking for. 
 
good luck, keep us posted!
 
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/2/2008 2:27 PM (GMT -7)   
Wow, very interesting! Did your pain move around ...like hit your spine suddenly then hours later hit your ankle? The other oddities are I am having EXTREME joint cracking and muscle twitching
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no diagnosis for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of August-muscle twitching throughout my body. 
 
 
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 9/2/2008 2:48 PM (GMT -7)   
Hi King,

my first symptoms were joint pain that has gradually gotten worse, extreme fatigue, sun sensitivity, mouth sores, weight loss, nausea, diarrhea & 2 miscarriages among others. I also saw 2 rheumy's that dismissed me and my symptoms. I finally found a great rheumy that listened to me and spent time with me getting to know me and my symptoms and she actually wanted to help me!!! You may have to find another rheumy, unfortunately just because they specialize in joints, soft tissue diseases' doesn't mean they specialize in lupus.

Since Ginny mentioned Fibro, take a look at this website, it may be helpful. Take care and keep us updated.

www.myalgia.com/lupus.htm
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/2/2008 3:06 PM (GMT -7)   
Were your joint/bone pains all over the chart? When I first had it I thought I twisted my ankle, but was fine in the am. The next day my other foot hurt, even my toes--felt like they were being crushed. Since then I will get pulsating pains in my fingers, shooting pains in my spine and pain in my ankles (which is the worst). The pain just onset one day. Also, just at that time my joints started to crack like CRAZY-I counted 15 times in 10 min. Now I have little muscle twitches everywhere....I am getting an MRI for possible MS though I doubt its that.

Does lupus cause really bad joint cracking too and buzzing feet?> Does it always show up in the blood?
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no diagnosis for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of August-muscle twitching throughout my body. 
 
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/2/2008 4:00 PM (GMT -7)   
Hey King,
 
YES!  It drives me insane.  The pain will be in my hips and then 10 minutes later it's in my ankles and elbows, then it will move to my spine, then my neck. It's constantly on the move!
 
I get a lot of cracking in all my joints.  Muscle spasms in my back are rough.  Even my right eyelid twitches uncontrollably.  The pain I get is so bad I have to take big time pain medication.  It's hideous. 
 
Lupus can cause the cracking, painful joints and buzzing feet.  So can Fibromyalgia..... Yeah, it's really frustrating to know which disease is flaring.
 
Lupus doesn't always show up in the blood.  Some people will have negative results, but eventually, the positive blood work will show up. When your inflammation gets to a certain place it will show up.  So you know, Fibromyalgia ISN'T an inflammatory disorder.  Which is why any blood tests for inflammation will be negative.  I'd touch base with the folks in the Fibromyalgia forum too. 
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/2/2008 4:13 PM (GMT -7)   
Oh wow thanks for this info. The pain I get in my spine feels DEEP in my spine. IN fact I am getting a spine MRI as I am nervous I have a tumor. Also I had a bone scan because I though it was deep in my bones. Its like quick current to my bones, or it feels like they are being crushed and it just jumps around.

I did not know that cracking goes hand in hand with lupus too-this is GOOD TO KNOW! I just want SOMETHING to show up my ana sed nuc cbc igm ALL okay! I feel SOO hopeless.

How long did it take you to get a dx? Did you have joint cracking before the oneset of your pain?

This muscle twitching is odd too, just started two wks ago and its ALL over my body

I am getting nerve testing too..........
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no diagnosis for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of August-muscle twitching throughout my body. 
 
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/2/2008 4:25 PM (GMT -7)   
King, this is almost a deja vu moment for me, talking with you!!!
 
I got a nerve test done in April because I was having numbness in my hands and fingers that would not go away.... Test results - normal. Of course!
 
I had all the blood tests done.  Everything looked and still looks beautiful.  In fact, my lupus is dead quiet right now. I'm tapering down on my prednisone.
 
I've had Fibromyalgia and lupus since 2000. Both were diagnosed together.  Fun times....
 
But... My fibro has NEVER presented itself this way before.  I knew I had it because if I were to get poked or bump into something, the pain in my soft tissues and muscles felt like a big bruise. I have all the tender points as well.  So this moving joint pain (what I thought was joint pain) was brand new to me. I never even had it when my lupus was active and flaring. 
 
It was a huge surprise to learn that I was in a MASSIVE Fibro flare up. 
 
Yes, I have always had cracking of my joints. Even when I was a teenager, long before my diagnosis. I have popcorn joints :)
 
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/2/2008 4:42 PM (GMT -7)   
Ahhh see my joints did not start cracking until I started getting this pain which was a HUGE red flag to me.

I dont have those tender points with the fibro. My main pain is DEEP in my spine, ankles, toes, long bone (leg) fingers.

I am so nervous I am just going to drop one day since I have not getting dx yet!
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no diagnosis for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of August-muscle twitching throughout my body. 
 
 
 
 


SSDore9240
Regular Member


Date Joined Aug 2008
Total Posts : 56
   Posted 9/4/2008 4:50 PM (GMT -7)   
Hello,

I have to say Ginny, Im following in your foot steps! I still have a very difficult time telling which it is the SLE or the FM!? King I'd seriously check out the possibility of the FM. When they both flare together you get some interesting symptoms! Rest has been the best RX for me so far.
Good Luck!
31 year old mom of 1: SLE, UCTD, FM, Arthritis, Reynalds(?), Migraines, Alopecia, Neuropothy(L:Hand & Foot), Int. Bells Palsey, Costrocondritis(?), a bunch of other stuff I don't remember right now and even more labwork I dont understand! Patient at Johns Hopkins in Baltimore, MD.
 Plaquinil, Trazodone, Lidoderm, Percocet for now...I hate taking the meds!  Refusing any more Prednisone!


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/11/2008 11:41 AM (GMT -7)   
Hi guys thansk for all of your comments. Hear is a few more questions re both lupus and FM
 
-I do not have the tender points so does that mean no fibro?
- Is it possible for symptoms (for either) to onset one day and other symptoms to add on?
- I have muscle twitching that seems to get worse-all over my body> I will be sitting there and can feel it in my thigh-quick little twitches, then it moves to my back, butt, shoulder. Is this "normal" for either fibro or lupus? This has been going on every day for at least 2 wks now
 
Finally- how long can it take for anything/something to show up in labs with lupus?
 
Thanks for your support- I feel so hopeless right now and scared.
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no diagnosis for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of August-muscle twitching throughout my body. 
New as of Sept- basel cell skin cancer
 
TESTS-
Blood
CBC
ANA
Sed rate
Lupus
RA
Vitami D
Anti nuc
Calcium
TSH
T3
Too many to list -all CLEAR
 
Scans/xrays
Ultra sound of stomach organs
Sig/colonoscopy (mid way through)
MRI of head and spine
Bone scan
ALL CLEAR
 
 
 
 
 
 


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 9/11/2008 2:49 PM (GMT -7)   
have you been tested for lyme disease?
Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/11/2008 2:51 PM (GMT -7)   
I have--through Lcorp-and quest, it was neg. I am waiting my results from Igenex, should be in tomorrow. I live in San Francisco though so not sure how I could possilby get it!
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
New as of Sept- basel cell skin cancer
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 9/11/2008 2:57 PM (GMT -7)   
I know a few peeps who live in SF with lyme.
I was reinfected by a misquito bite. so anything is possible. Lyme has thrown me for a loop.

Curious to know what your igenex results are. Good luck, if you are CDC neg but show lyme bands, you should see an LLMD
Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 9/11/2008 2:58 PM (GMT -7)   
by the way, I had all the same symptoms as you and was first dx with lupus then went further and was also dx with lyme.

Confusing and still not sure where I stand on either illness
Moderator - Anxiety-panic forum
 
where we take it one panic attack at a time
 
 
 
The world breaks every one and afterward many are strong in the broken places


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/11/2008 3:08 PM (GMT -7)   
Oh wow, very interesting. I know it sounds nutty but I am HOPING for lyme, I need some sort of dx for this pain etc.

Did you get tested through IG? Did it come back positive the first time?

Oh I have never had a rash....
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
New as of Sept- basel cell skin cancer
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 9/11/2008 3:09 PM (GMT -7)   
BTW how did your symptoms start? Its just odd that EVERYTHING is fine test wise.
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing, fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
New as of Sept- basel cell skin cancer
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 9/14/2008 10:00 AM (GMT -7)   
Hi,
 
I had no clue I had lupus when mine started (about 19 years ago) but from what I remember my first symptoms were: extreme fatigue, muscle aches and pains, migrating joint pains and inflammation (my right ankle became severely swollen, I couldnt even stand on my foot); malar rash, other rashes that came & went; some paresthesias (nerve symptoms), an overall sense of feeling ill & sluggish; I became depressed and since I coulnd move around, had gained weight as well. I also had hair thinning, it was falling out alot but I did not have any actual bald spots. I also got hives for what seemed no reason, sudden nausea and other things I can't remember. I had no insurance so for many symptoms I waited a long time, then started racking up some office visits & medical bills on my credit cards. For almost a year, I went to a podiatrist every week and had ankle injections, water therapy, heat therapy, ultrasound therapy, he gave me various medication samples...that all costed more than I was even making per week. He just said it was synovitis and it seemed like he felt bad but he was at a loss as to what was going on & why nothing was helping. So I racked up my cards over the years going to different docs a few times for different symptoms until I could afford it no more. Even when I had a foot x-ray, I told the tech I could not afford much, so she did the best to do one x-ray that might show the most info. Several years later I borrowed some money to see a Dermatologist due to a severe rash on my face that I thought might be skin cancer or something. He was the first doc to ever ask If I had other symptoms and I said yes to almost all that he asked about. I had a few blood tests and had an eleveated ANA titer at that time. He thought I probably had lupus (which I had never heard of). But again, I couldnt afford to see a Rheum, as he suggested I should do, so I never went. I just suffered flares over the years of all sorts of symtpoms.
 
I should mention in the beginning I was working outside in the sun all day; and I also took a vacation to Aruba where, even though I wore the highest SPF sunblock they had, my entire body was severely burnt. And not long after I began feeling run down and got flare. Finally in late '02 or early '03 I foudn a job with health insurance and a co-worker got me an appt. with her Rheum. I explained to him all that happened over the years and he has diagnosed me with Lupus (though he's also run many bloodtests over these past several years). He also diagnosed me with Fibromyalgia and other unrelated things that happened with my spine.

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 9/14/2008 11:58 AM (GMT -7)   
Looking back... my first symptom was muscular skeltal pain in the chest... then it affected my eyes..I had both eyes swell and had this certain type of infection... my eye dr said he usually only see's this type with people that have auto immune disease.. My head just dropped.. because I had been seeing a Rheum in Little Rock but had not been actually told I had lupus yet.... it affects my joints all over... it just moves everywhere...

shelly23
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 9/29/2008 12:13 PM (GMT -7)   

I have been going through very similar symptoms almost matching....... how are you doing lyme dx or not. hope this finds your doing well          shelly

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