Is this common?

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New Member

Date Joined Nov 2007
Total Posts : 16
   Posted 11/20/2007 7:02 PM (GMT -6)   
Hi all,
As some of you know, I had been tested for lupus, due to syptoms, but was told the tests were negative.  I shared I was feeling better and began an excercise program.  I felt great for about 2 weeks and then this sunday I got dizzy a few times and had to lay down.  I fell asleep and have been extremely fatiqued since.  My joints ache and big toe burns.  I just feel "out of it" and just want to sleep.  Does this sound famiiar to anyone? 
I am beginning to think I am losing my mind.  The only thing keeping me hanging on is the feedback that I receive here.  When you hear someone say "I experienced that too" I know I am not "crazy".  I love the fact that know one here says "stop complaining and just get out of bed"
Thanks gang
If He brings you to it...He will get you through it.

Veteran Member

Date Joined Aug 2007
Total Posts : 4415
   Posted 11/20/2007 7:10 PM (GMT -6)   
Has anyone checked you for gout? It is a type of arthritis that can also cause pain in various other joints in addition to or instead of the large toe.

Your symptoms may also be from Lupus, but I'm just trying to think of other things that may need to be looked in to so you can start feeling better :)

Take care,
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant & Medication Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, Very Low Lymphocyte Counts (T-Cells & B-Cells), malabsorption/malnutrition, etc.
Meds:  Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.

Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 11/20/2007 7:14 PM (GMT -6)   
YES!!!! Dazed, it is very comman...You go through your ups and downs. You have to watch yourself not to over do it. For me I used up all my engery while working, that when I got home all I counld do is lay in bed. I counldn't get myself up even if I wanted too.

It's sounds very much what I have gone through....

Be easy on yourself....
Enjoy what you can today and leave the rest for another day.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 11/20/2007 7:30 PM (GMT -6)   

No Dazed you are not crazy. I have goods days or good weeks and than BAM. It's gotten to the point where I hold my breath when I'm feeling HUMAN because I know it's only a matter of time before I fall on my face again. Like Frank said you have to try not to over do it on good days. Unfortunately we tend to want to catch up on everything we havn't been able to do. If you are cooking for turkey day try to delagate responsibility as much as possible. If you are going somewhere else don't feel guilty for letting others take care of things. The more you can rest the faster your start feeling better.

hugs carol

God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I

New Member

Date Joined Nov 2007
Total Posts : 16
   Posted 11/20/2007 7:32 PM (GMT -6)   
Thanks. I understand that Lupus is very hard to diagnos, but when the Doc said no, I go into "it must be in my head" mode and try to push as if I am OK. Problem is I dont always feel OK. You all encourage me to listen to my body. I must remember that and take it easy. Its hard trying to convince myself that I can be sick without a diagnosis.

about the gout: woke up one morning with the worst pain in my wrist, and swollen too. Did not injure it so doc suspected gout. had some blood work and he said no. Went for xray and found out it was fractured? Doc very puzzled.

I am a mess. lol
If He brings you to it...He will get you through it.

Regular Member

Date Joined Aug 2007
Total Posts : 171
   Posted 11/20/2007 8:51 PM (GMT -6)   

For almost twenty years my blood tests showed up negative for lupus.  My rheumy said that your blood tests might never show anything different, then again they could go crazy.  Three years ago my blood tests starting showing positive results and continued to climb.  Before the blood tests showed positive my rheumy treated me based on my symptoms (which is what a good rheumy should do).  Now my blood tests show positive and I've got the official diagnosis in my chart. 

Your symptoms sound very familiar.  It sounds as though you might be in a flare.  You should go back into your doctor while you're feeling this way and let him exam you and run those blood tests again.  Ask him to treat you based on your symptoms, not on the results of the blood tests.

You're not going crazy, it's not all in your head ... what you're experiencing is very real and needs to be taken seriously.   You need to pace yourself, eat healthy and get as much rest as you can.  And if at all possible limit your stress.  I know, easier said than done.  If you need a shoulder or an ear, we're here, and we know what you're going through.  Hugs!

SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06, Enchondroma on my skull 11/07
Plaquenil, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Pepcid, Folic Acid, Loratab ,Percoset, Toradol
There is no psychiatrist in the world like a puppy licking your face.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 11/20/2007 10:51 PM (GMT -6)   
Hi dazed,

I agree with Gidget . . . my rheumy says the same thing . . you treat symptoms. I'm awaiting results from another huge batch of blood work, and I told him I have never tested positive for ANA or any of the anti-anythings except for the thyroid. He told me that doesn't mean a thing, and that he will treat the symptoms.

Are you seeing an PCP. or a rheumy?? Maybe you could get a referal to a rheumy . . . they are much better at this stuff. My pcp said there was nothing wrong with me. Rheumy says otherwise.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 11/21/2007 1:58 PM (GMT -6)   
The symptoms you've experienced are fairly common for me (and my lupus) and indicate I've been doing too much. My toes and/or hands will randomly hurt/ache/tingle and I'll be extremely (more than usual!) tired for a few days.

For me, it's definitely a small lupus reaction to whatever I've been up too -- it doesn't have to have been physical, sometimes this happens with mental exertion or stress.

Unless you eat a lot of rich foods/drink and don't exercise, it probably isn't gout -- gout doesn't include fatigue. It could be a number of things, but if lupus is the best fit, then that probably hasn't changed. Don't forget that regardless of what your dr says, lupus is identified by having 4 of 11 symptoms, NOT by blood or urine tests. Check out the links in my signature for more information.


Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
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Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 11/21/2007 6:43 PM (GMT -6)   
I would look for a rheumy who will deal with symptoms and doesn't think blood is end all be all.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 11/21/2007 8:41 PM (GMT -6)   
dazed, I also have some of the experiences you've described. It reminds me a lot of how I felt when I first got sick. I felt off balance, very fatigued and weak and had joint pain. Initially I had a very low positive ANA and my fitst rheumy brushed it off and said I had fibro, so I went along with that until I kept getting worse and he completely ignored my new symptoms. I switched rhuemies and my next one was better and started treating my symptoms but wouldn't diagnose me with anything, but it was very clear that I didn't have fibro. I finally hit the jackpot with my 3rd rheumy who saw me when I was very sick and had lots of positive labs and symptoms, so I finally got a diagnosis and meds that have helped improve the quality of my life.

Just don't give up. Like everyone said it can take a long time for a diagnosis. It can also take a long time for your labs to catch up to your symptoms.

Hang in there and take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 11/21/2007 10:01 PM (GMT -6)   
Pain in the big toe, be it burning or what, is common in osteoarthritis. Both my big toes hurt. Also along the line of those nerves that run down from the lumbar. could also be shoes. Fatigue you describe is normal for about everyone here I think, you might have some exercise induced asthma that contributes, maybe you can talk to your doc about pulmonary tests. If so, using an inhaler before you exercise may greatly improve your tolerance. Take care.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
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New Member

Date Joined Nov 2007
Total Posts : 16
   Posted 11/23/2007 11:16 PM (GMT -6)   
Thanks everyone for all your replies and support. I go to the Rheumy on Monday for the second time. The first time he said all tests were negative but will probably repeat them next visit (Mndy) I will let everybody know how I make out. He had a unconcerned attitude so I am curious to see what happens and what direction he is going to take.

Once again thanks.

If He brings you to it...He will get you through it.

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