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Zooanimal28

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 #1 
I've posted before that I tested positive for ANA along with having many other issues. I have severe pain along my whole diaphragm, shooting pain under my ribs. My arms and legs get really bad at night in pain and I constantly feel really sick. I finally found a doctor who gets it....maybe. I've been to every doctor for a year. The last one told me ana doesn't mean anything. This one told me it does. She told me I have hypermobility syndrome and undifferentiated connective tissue disease...which from reading seems like she can't diagnose me so that's just a broad terms for you have some auto immune disorder bit we don't know what. Then she saysays it could turn into lupus and I'll have good and bad days but there is nothino I can do.......I'm confused and every day I'm suffering. Right now it's 1am and I can't sleep in pain and sickness. She told me my job may be too physical for my body (work at a zoo). She has me taking hydroxychloroquine once a day and says it will take months to help me. I just started taking it. I feel like I'm getting worse every day. And recently I had a friend with a relative that died out of nowhere and they diagnosed her with lupus after her death. I'm lost.
taffylinden

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 #2 

The whole field of autoimmune disorders is really not well understood. It can be enormously frustrating, even frightening, and it definitely requires a lot of patience and persistence. As you've probably read elsewhere on here, it can take a long time to get a diagnosis, as in many years. It's true that undifferentiated connective tissue disorder is kind of a blanket term. I call it the big medical shrug. However, just because docs don't know what kind of disorder you have doesn't mean they can't start treating it, as your doc is in prescribing hydroxychloroquine. It generally does take a few months to take effect. 

Is your current doctor a rheumatologist? If not, I'd urge you to seek the advice of a rheumatologist who has experience with lupus patients. I'd ask about pain management. Are there any OTC meds your doctor could recommend that might help the pain, even a little? If not, could he or she refer you to a pain specialist? My son had to consult a pain specialist about horrendous back issues and was told regular docs understand very little about pain and pain management. The pain specialist was a huge help to him. I don't know if that's an option for you, but maybe think about asking your doctor. 

Try not to worry about the future too much. Whatever the situation was with your friend's relative, it's not your situation. Your doc KNOWS you have an auto-immune disorder, and you're being treated for it. Hang onto that, OK?

 

Zooanimal28

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 #3 
Thanks so much for replying. She told me to take Tylenol when it's really bad. I don't do well on pain meds especially the stronger ones. My stomach can't handle them. Yes she is a rheumatoid doctor. I understand it's such a gray field of medicine. I wish there was more research on it! Thanks again.
Cakelady

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 #4 
       
undifferentiated connective tissue disease is what a lot of rhemys or doctors like to dx someone first instead of lupus. Once you get tha lupus dx there really is no going back and you will be denied life insurance and in some cases health insurance. So I would accept the UCTD dx and find out what works for you.

If pain meds don't work have you tried heating amrice pack or an electric throw? When my muscles are still it's what I use.

Good luck

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Zooanimal28

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 #5 
Why is lupus denied for insurance?
I think I need to try a heating pad. Good idea
Thanks!
Cakelady

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 #6 
Until Obamacare if youndid not have insurance when you were dx it would be considered a preexisting condition and there for you could be denied
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Zooanimal28

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 #7 
Ok got it. Well I did have insurance when I was diagnosed.
Cakelady

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 #8 
People with lupus can get sick vey fast and it could end up costing the insurance company money. So it's a good thing you have insurance and for the most part people who could not get insurance because they have lupus they now can thanks to Obamacare
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Zooanimal28

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 #9 
Today I can't walk with my knees. They are in so much pain and I feel like my bones are rubbing together. I don't know what's just auto immune affecting me or if I should actually get my knees checked out especially with hypermobility.
taffylinden

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 #10 
If my knees were hurting so much I couldn't walk, I'd get them checked out. I think any dramatic or disabling increase in pain levels warrants a trip to the doctor. 

The first time I saw a rheumatologist re: autoimmune symptoms, he said he wouldn't diagnose me with lupus because once that was in my record, I'd never be able to get insurance. Under Obamacare, that's no longer legal. You can't be denied coverage simply because you have lupus. Don't even get me started on insurance companies!

I sure hope you get some relief soon! 
Zooanimal28

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 #11 
Ya it seems to be getting worse. The doctor told me I'd have good and bad days and to only take Tylenol on the worst days, but I've been tracking my symptoms and I haven't had one good day in 2 weeks. I just do not think I should have this much pain in my joints.
clgrover

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 #12 
My spouse's auto-immune diseases have presented themselves in a variety of ways over the years. Sequentially, I remember the diagnostic labels as polymyalgia rheumatica, mixed connective tissue disease, fibromyalgia, and lupus. Experienced practitioners in different areas in which we have lived have been very helpful. Treatment methods have not varied a great deal among these diagnostic labels and the constellations of symptoms that have presented themselves from time to time. The major exception is that my spouse has been able to get by without oral steroids (prednisone) since Lyrica became available. Her positive attitude has been a great help, as have faith and grace and patience. She works at accepting care and changing limitations. I strive to be supportive and understanding. All such elements make for a healing system. We garner what we can. We try to be patient while treatments have needed time to work. We accept and use a wide variety of approaches. We do research. We work with practitioners as a team, accepting and exercising all the responsibility we can. No single thing would work for us. No fad would work for us. Sensible science and compassionate art win the years, if not the day.
TykieCrum

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 #13 
Tylenol and ibuprofen didn't really help with my pain. The rheumatologist prescribed gabapentin but only 100 mg. My neurologist kept increasing the dose over time because of my recurring migraines. I now take 1200 mg and it has made a huge difference in my pain. I also have fibromyalgia and suffer very painful groin spasms. Still trying to figure out what to do about that. One day at a time though. Hang in there. Celebrate the good days. You will have them!
taffylinden

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 #14 
The pain specialist told my son that pain that is not managed can be damaging. If your doctor said only Tylenol on the bad days, she obviously wasn't thinking the bad days would be this bad. I wouldn't assume this level of pain is what she meant. 
Karen7119

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 #15 
Hi there. It sounds like we're in similar situations. I'm negative for all tests except am positive for ANA 1:160 diffuse pattern. I have terrible joint pain, muscle pain, headaches, itchy skin and eyes, memory loss, confusion, hair loss, and lack of concentration. My symptoms started 1 day after a tetanus vaccine. Rheumatologists says only having a positive ANA doesn't mean anything and initially thought it was a vaccine reaction. But I have all these symptoms and the vaccine was 4 months ago. I did have a slightly elevated anti histone antibody that is usually associated with drug induced lupus but I haven't been on any medications. Were you negative for all other tests, including the inflammatory tests, and how did your most recent doctor diagnose you?

Thanks,

Karen
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