What is going on in my body?!

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New Member

Date Joined Sep 2013
Total Posts : 7
   Posted 9/27/2013 11:08 PM (GMT -6)   
I found this site trying to figure out how to feel well. I will start from the beginning here. I got strep in jan. 2011. Three rounds of antibiotics, wide spread joint pain and chest pains it finally went away. Suspicions of rheumatic fever were raised but all labs and heart tests came back clear. That summer started having hearing problems (sounded like my head was under water) I was put on Flonase, which helped but hair began thinning dramatically and I quit taking. December began having sensitivity to cold, eventually progressed to raynauds disease(a barrage of lab tests, all normal except a 1:40 ana) Every attack followed by days of feeling like I had the flu. My dad passed away in oct so all symptoms were blamed on depression and stress. Warm weather came and I had two months of feeling fairly well. Then came August. It started with pain in the knuckle of my middle finger, then involved my pinky followed by extreme pain in my hand while sleeping and stiffness. Other joints became tender (ankles, wrists, elbows, knees) and they began making popping noises when I moved and a pressure type pain sensation. Hair loss again. Went to urgent care where Dr put me on meloxicam and was to follow up with my pcp. So two weeks later (6 weeks into this "flare") I saw my pcp and she said I was a peculiar case and she was clueless as to what was going on and wants to send me to a rheumatologist. I am tired if not feeling well and having my symptoms dismissed as stress, not sleeping, depression, allergies, etc. can anyone relate to my symptoms? Were you diagnosed with anything? Did you find a way to manage the pain, hair loss, tiredness? I am at my whits end here! Thank you for reading my post.

Forum Moderator

Date Joined May 2005
Total Posts : 7673
   Posted 9/27/2013 11:36 PM (GMT -6)   
It seems to me that your PCP's recommendation is a good one -- see a rheumotologist. Your symptoms could very easily indicate an auto-immune disease like Lupus. Read more at www.lupus.com - see the 11 symptoms of Lupus, you need have only 4 to be diagnosed.

Lupus can feel very much like having the flu! And your other symptoms are not unusual, either.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 9/27/2013 11:38 PM (GMT -6)   
You do sound like you have something going on, exactly what I can't tell because I'm not a doctor.
Have you read the 11 indicators of lupus at lupus.org yet? You need to only match 4 of the symptoms. You might find yourself in there or not.

Lupus is a tricky thing to diagnose and a good rhuemy can tell if you have it or not. I'd go on to the rhuemy and get checked out throughly and find out what's happening.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

New Member

Date Joined Sep 2013
Total Posts : 7
   Posted 9/28/2013 12:14 AM (GMT -6)   
I don't meet the criteria listed for diagnosing lupus ( only have a weak positive ana and joint pain without much swelling)but have many of the symptoms experieced by those with lupus. Extreme fatigue, Headaches (electrical like shocks from top of head running behind ear), Painful joints, Swelling in legs (characterized by extreme itchiness upon standing in the morning. Puffy stiff fingers, Pain in chest on deep breathing (had following bout with strep) Hair loss (hair in multiple stages of regrowth) Raynaud’s disease diagnosed in march, sores in nose. In the last year I have been told I have seasonal allergies, tmj, constipation, sleep deprived and viral arthritis. I have had all the blood work ran(and reran) with only the 1:40 ana ( and an abnormal pap which I'm sure was unrelated). Could this all be as simple as a vitamin deficiency or hormone imbalance? If I can figure out the cause then I can work in fixing it and not just treating symptoms. It never fails that most to all symptoms are gone when I finally make an appointment to see the dr. She did get to see my cold sensitivity first hand though when examining me today (drop in body temp, shivers, color changes in hand and blue web like rash up my arm.(which I feel might be the reason for the rheumatology referral. I am happy that others can see this as more than the dr implies because at times I wonder if its all in my head. Thanks

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 9/28/2013 2:29 PM (GMT -6)   
Hello Music:

Welcome to the Lupus forum. Sorry that you've got something like this going on and you're not feeling well. I have to say, (I'm not a Dr) it sounds like you have some of the lupus symptoms.

Lupus is just so hard to DX it can literally takes years, I'm sorry to say. It took my Doctors 13 years before they said YES I had it and began to treat my condition. Even now they sometimes argue about it, I'm in the rare % that usually tests ANA negative. My other labs are positive and I have 10 of the 11 symptoms. I also have symptoms of other AI diseases too.

I would suggest that you keep a journal listing what symptoms you have. Your pain as to where its located and how bad. I'd write down things like if you eat a certain food and get a reaction over and over again, write it down. Any little thing I'd keep track of it, I'd also try to get in and see another Rheumy and get a second opinion.

Sometimes, we go through several Doctors before getting the right one. Your journal may provide them with a lot of valuable information about what's going on with you.

I've had lupus for 26 years now, lupus patients vary in symptoms, degree of illness, and how they respond to treatment. Some folks are lucky enough it's really mild and hardly affects them. Others are so bad that they may need a kidney transplant (like one of our moderators) or have multiple organ involvement. This is just a really complex disease.

If you think you may have a vitamin deficiency I'd go see your regular and ask them to test you. You're right IF that is what's wrong you should be able to resolve thing fairly easily. However, IF it's Lupus or another AI disease, that may not be the case. There isn't a CURE for lupus, but it can be CONTROLLED. Doctors do not know what causes lupus.

If you have any questions please come and ask we are all more than willing to try to answer them for you. Please let us know how you're doing. Hang in there, it's hard at times but you'll be able to hang on.

DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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