What is Fibromyalgia
Fibromyalgia (FM or FMS or Fibro) is a debilitating chronic syndrome (constellation of signs and symptoms) characterized by diffuse or specific muscle, joint, or bone pain, fatigue...
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dMy pain level has been really bad for over 2 weeks now. I went to the doctor last Monday and he ordered a bunch of bloodwork.
I work at a cancer center, and I have crappy veins, so I get all my blood drawn at work - there is one gal in particular who is always able to get me. So, yesterday I get some more results back. My ANA is positive (has been for years), with a 1:64 titer and a diffuse pattern. It's never been this high, and the pattern has always been speckled. Asked the doctor I work with about the ANA and titer....he says "oh that is very high - lupus". He says there are additional tests you can order and then we get interupted. I ask him later about the additional tests - and hand him my bloodwork. I didn't mention the first time that it was me. He asked me some questions, said it could also be polymyocystitis (sp). He asked me some questions about my symptoms and looked kinda shocked at some of the issues I am having, especially pain - which is now in my hands and feet - joints - most of the time. Though I complain once in a while at work, I must put on a pretty good show....he seemed very surprised that I am in chronic pain. I did some research last night - mostly because my ANA has never been this high, and the pattern has changed. What freaked me ou, and what I woke up with on my mind is this: "1:64 is considered very high and tissue damage is imminent." I'm a bit freaked. I've been concerned for a couple of months about my living situation. I am to far from family and from friends. My hours at work are under close survelliance, and my next check will be enough to just cover the rent. I guess what I am saying is I am already struggling. Trying to stay very low key and understated at work and with loved ones, but.....the truth be known I am getting pretty scared. Blessings, Jan Posted on 10/27/09, 08:10 am |
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Sorry you are going thru this. It sounds like you have a good doctor stay on top of it so you don't fall thru the cracks. I would also ask your doctor if he's heard about this XMRV virus (see my journal for info I've collected)
Try to be positive if it's something and it's caught early there could be good treatments. Also if it's in the later stages there are still good treatments for most illnesses. I had stage III breast cancer 10 years ago and I'm still completely cancer free. And have hopes of being fibro free soon. Will be keeping you in my prayers. Hugs 
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Hey, Jan....so sorry you are in such pain...I have an elevated ANA as well, although for the life of me, I can't remember the last number! I'd push for the additional testing...I gotta know what I'm dealing with.
Good luck, and please keep us posted....saying prayers for you! HUGS from down south :)
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Hi Jan. I hope they are able to resolve your problems. I know what you are going through. I have Fibro and have just been diagnosed with Lupus and Sjogren's disease and I try not to think about the damage that could be going on and/or what has already been done inside my body. Not sure if you are taking anything yet, but I have recently added hydroxychloroquine (for the Lupus/Sjogrens) and I have been taking Lyrica for about 2 months now. I'm begining to feel better, but I still feel like the damage is done and ongoing and I get scared about it too. Try to keep focused on other important things in your live, like the loved ones you mentioned. This is what gets me through most of the time.
Best wishes to you.
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I do hope they get all the tests in...and get you on a Viable Treatment Program..I too would be scared..you have No one that can go with you to these appointments ? anymore I Always take someone with me...I just don't hear everything a Dr. says...my Mind is busy with questions so I don't always hear the answers...Please let us know everything once you know !! will be watching for updates, and Praying for you that it is NOT Lupus !!
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Hi Jan,
It's great to see that you are on top of things like getting tested, research etc. that's half the battle. Maybe talk to your doc about taking an anti-inflammatory? I take Voltaren off and on and they do help. I don't take them regularly as I worry about liver damage. My mom takes Celebrex with good results and no side effects. They also make a Voltaren gel that might be better for you that works ok. (((hugs to you)))
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Hi Jan. Yes make sure you have a full panel done for autoimmune diseases. I have a bunch of them and they often go hand in hand with fibro. There are meds you can take to slow down progression. Usually they put you on plaquinal first and maybe prednisone. There are other treatments too so don't panic ok. Just get that blood work done as soon as possible. hugs hon marilyn
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Hi Jan, I'm sorry you're going through all this and without familiy close by. Lupus is a scary diagnosis to deal with. I know what Lupus is but is there a definite marker that they can say, yes, you really do have Lupus? Is the high ANA level an indicator if it's high for X amount of months?
I've heard that all these autoimmune diseases are possible once you have fibro. All of this can be so scary. I hope you get the answers you're looking for soon. It sounds like you're being so brave, but that can take such a toll on your body too. Do you have a sympathetic family member that you can unload on? Or is there anyone on this forum that may be close by? Keep us posted on everything. I'll keep you in my thoughts. Hugs
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is there any way that you can live with family and friends or a good co-worker to ease your financial situation? You don't need the added stress.....all the best. Take care of yourself!
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Jan,
First off, Hugs to you. Now, I understand how you are feeling. I have had the same tests and the same results....my ANA's have been rising slowly, but steadily over the past year. However, there is still no sign of Lupus or tissue damage. So, try to stay positive and go with the flow. If things progress quickly for you, then you will be treated and you CAN deal with it. You are a strong woman. This will not beat you. Hugs again to you
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