Feeling awful - could I have lupus?

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alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 2/23/2009 5:03 PM (GMT -7)   
Hi I'm a new member here. I have been feeling ill for a number of years now and have had lots of random what I thought were unconnected illness. However now I'm not so sure!

I have an appointment with a rheumatologist in 3 weeks. Its taken me nearly a year of this last illness to get this referral. It started last February when I had a high fever and raised rash on my shoulder that looked like shingles. I felt dreadfully ill and literally slept for a whole week. I had some swabs and blood tests to see if I had shingles and they came back negative. I have since had a number of raised spots that come and go. In the last two years I have developed asthma type symptoms and have a dust mite allergy. A couple of years ago I had anemia, and I've always been borderline.

Then one day in July last year I woke up with numb fingers. I've always had circulation problems in my hands and feet - I seem to be freezing cold one minute and then over hot the next. This has now spread and my hands are very numb with pins and needles, and I can't bear to put my hands in warm water as it hurts too much. At the same time I had a chest infection and had to have a chest xray as they thought I had pneumonia. I've been chronically tired too - sometimes I'm so exhausted I could just sit and cry. I have pins and needles in my hands, feet and neck right now.

When I reported the hands problem to my GP I was referred to outpatients at the hospital for tests. One of the tests they ran was ANA - it came back positive. But they thought it might be because of the chest infection, so they repeated the tests in November. It was positive again. I went back to my GP who referred me to the rheumatologist. But no-one has told me if they suspect anything or what they're testing me for. It's only because I googled the ANA test that I began to put two and two together. My mum was diagnosed with fybromialga and I've asked her if she's ever been ANA positive but she doesn't remember if she ever had this test.

Anyone got any thoughts or advice?

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 2/23/2009 5:50 PM (GMT -7)   
Hi and welcome. This is a wonderful group of people. They are very helpful and supportive! I am sorry to hear that you have been having so many problems, but it does sound like you are on the right track. Your symptoms sound all too familiar. This disease is often quite difficult to diagnose, and one of the reasons for that are all the supposedly disparate symptoms. A rheumy is definitely the doctor to see. He/she will probably run additional bloodwork. Also, you may want to take or send copies of any of your previous tests with you to the appointment. If you have any pictures that show the rashes, you may want to take them, too. Good Luck!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/23/2009 6:56 PM (GMT -7)   
Hello there,
 
Welcome to the forum. Lupus is called the "great imitator".  It can mimick many autoimmune diseases, which is one of the reasons why it takes so long to get a diagnosis.  Doctors have to be certain with their diagnosis. Your symptoms do sound like Lupus.  Have you checked to see if you have at least 4 of the 11 criteria needed for a lupus diagnosis?  You can find the criteria at www.lupus.org.
 
Fibromyalgia can be present with or without an accompanying disease.  A positive ANA won't show up in people with Fibromyalgia, unless they have something else autoimmune going on.  Fibro isn't an autoimmune disease.  But for many people with Lupus, Fibromyalgia will show up as well, like me!
 
Continue to keep a diary of all your symptoms, and like Fran said, take pictures of any rashes you get.  Good luck with your rheumatology appointment.  Let us know if you have any questions okay!
 
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

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 2/24/2009 1:12 AM (GMT -7)   
Thanks for your help. Keeping a diary sounds like a good idea as it's hard to remember everything! The shingles type rash for instance I've had at least 6 times - on one occasion I had it right down the back of my left leg and I was in so much pain I couldn't sit down. about 5 years ago I had an irregular heart beat - I went to my GP who were very concerned and rigged me up to a portable ECG machine. The results were not good and my GP wanted to call an ambulance to be admitted to hospital. I refused - other than the irregular heart beat I didn't feel too bad, and at 30 years old I felt ridiculous! I managed to persuade them I would just go home and rest, and I was referred to a cardiac consultant who couldn't find anything. I have suffered from depression a few times, and have terrible problems with concentration and dizzy spells and headaches. I'm in a lot of pain at the moment and I have chronic fatigue - this and the hand and foot numbness are my main health concerns right now. I've made an appointment with my GP on Thursday as I feel dreadful and it's affecting my work and my whole life.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/24/2009 5:22 AM (GMT -7)   
Good morning Alim0nkey,
 
Just reading your last post, and your symptoms sound perfectly in tune with Fibromyalgia. I have this.  Your irregular heartbeat, depression, dizzy spells, headaches, numbness and chronic fatigue, are all classic symptoms.  Do you have widespread pain in your muscles and joints?  Pain that moves around quickly?
 
When you see your GP on Thursday, tell him you need a referal to a Rheumatologist.  They specialize in diseases like Lupus and Fibromyalgia.  They are your best connection to have in order to get this diagnosis ball rolling.
 
Take a peek in the Fibromyalgia forum we have here.  You might be surprised at how much you can relate to everyone there!  Because of your positive ANA, you might have both Lupus and Fibro. I had both when I was diagnosed.  Only your doctors can diagnose you of course. I'm just thinking out loud here!  But, for sure, keep a diary of your symptoms.  All of them, no matter how insignificant you think they are.  In the future, if your doctor says go to the hospital, please go!  Especially when you have heart irregularities.  Better to be safe than sorry smilewinkgrin
 
Talk with you soon!
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

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/24/2009 6:12 PM (GMT -7)   
Hi Alim0nkey, welcome! Ginny and Fran have given you some great advise and info, I have nothing to add, just wanted to welcome you to the board. It's good you are seeing a rheumy and the appt is not far off, it will be here before you know it. Feel free to ask more questions!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 3/1/2009 2:52 PM (GMT -7)   
Got about a week and a half before my appointment now. Hope it's a useful appointment, my recent experience of hospital appointments has been one of doctors who talk over you and barely spend more than 5 minutes getting to know your history.

My symptoms are not good tonight. I have chronic pins and needles in my neck and my face is burning up - I've checked my temperature though and it's normal. So weird!
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