Another Newbie here too

381 Views 12 Replies 7 Participants Last post by Fibrobugsme, Mar 13, 2009

Fibrobugsme

Discussion Starter · Mar 12, 2009

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Hello all,

I'm new today to this group and I thank you for allowing me in. I have not yet been diagnosed with Lupus and may never be really. So far they have found that I have Fibromyalgia and something they're currently calling Non specific Inflammatory Polyarthritis. The last time I saw my GP and my Rheumatologist I took pictures of my rash on my face that doesn't always show up. I have tested negative twice to the ole ANA test and an RA test as well. They're just not sure right now if they'll add Lupus to my "resume" but they do know whatever my problem is, it's Lupus like and systemic. I go for more blood work again in May so we'll see what happens then.

I hope you're all having a great day!!
Sharon

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Fibrobugsme

Discussion Starter · #8 · Mar 13, 2009

Katharine;537923 said:
Hello and welcome

I hope you will find the site useful for support and advice. There are a great many wonderful people here all willing to help in whatever way they can.

I presume that although you have no "formal" diagnosis, you are still being treated as you would be for lupus or another connective tissue disease?

bye for now,
Katharine

Hi Katharine,

No, they're threating me for Fibro and that's about it. I have no doubts that I do have Fibro but there are other things too and the medications for Fibro, while they help some, just don't cover it all. They don't treat the inflammation I have. Right now I'm on Pred for that. But, like last time I was on it, when I start the step down the inflammation just comes right back and there I am again.

Thank you for your welcome and I know I'll learn a lot here. I have questions about SED rates and CRP values. For lupus patients in fare...what do those numbers usually run? My SED rate is usually around 70 and my CRP is off the chart almost at 12.81..it keeps rising. These aren't common for Fibro because there is no inflammation associated with Fibro.

Take good care,
Sharon

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Fibrobugsme

Discussion Starter · #9 · Mar 13, 2009

onetay;537930 said:
Sharon,
Hi and Welcome to the site. It sounds like you have had a hard time with your illness, but are handling things well right now. Sometimes it takes awhile for the ana to turn and sometimes it never does (or at least in my case seems like it never will). We have a chat room that I hope you will join us in there soon. I hope you are feeling well.

Thank you Tammy. I think I'm doing pretty well over all these days. Much better than this time last year but not great. I've only had two ANA tests and both were negative so I'm sure sometime after my Pred is over they'll try it again and see what happens. My doctor wanted to send my information to Mass General in Boston to put it through their system and see what they come up with. That should be interesting. I hope he does it. I want to see what they find.

Take good care Tammy!
Sharon

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Fibrobugsme

Discussion Starter · #11 · Mar 13, 2009

KarolH;537982 said:
Hi Sharon from one Jersey girl to another.

I live in Gloucester County but we go to Seaville, next to Ocean City a lot during the summer months. So are you from this area or the Tom's River South Jersey shore area?:lol::lol::lol:

Welcome to a great place. For many years my ANA was negative too. I got a diagnosis many years ago that started with Chronic Fatigue Syndrome, then we graduated to Fibromyalgia, then we went to Multiple Sclerosis and that stuck for 3+ years until FINALLY my blood work started to paint a clearer picture for the doctors.

It can take years for positives to show up in our blood but I am a firm believer that you know your body best. Push forward and do not give up until you have answers and you will eventually get them. Is your Rheumatolagist a good doctor and one who works with you and not against you? If so, that is half the battle won!!!:wink2::wink2::wink2:

I do hope to get to know you better and again, welcome to a great place on the net!

Yep, you're from Gloucester. I did receive your e-mail and replied to a portion of it.

I do know where Seaville is. I got one of my cats there...16 years ago!! My cats have health issues right now too. That one is Diabetic and my Siamese has asthma. We're a bunch of sickies down here.

I don't know. I don't worry too much about test results. I could be one of those sero negative types that will never test positive. There are a bunch of people who test positive for things they'll never really have so I guess it all evens out somehow. I'm 58 years old now and have been trying to get a clear DX for years. I haven't always had health insurance so I'm getting tested when I can. In the last year I have been tested for RA and I've had an ANA and of course they were negative. My Rheumy isn't so sure I have Lupus but then I sent her pictures of my face with the rash I talk about that few have seen. I have terrible skin and a very reddish complexion now that seems to have come up in my 30's I guess. My mother who was a nurse at the time...now retired..was the one who first thought I had Lupus and that was back in 1993. She saw my face and I had so many aches and pains. I'd never heard of it before. Right now I'm being treated for Fibro and since I have no organ damage or anything like that...I guess I'm in the right spot with my treatment. I get tested a lot!! I'm surprised I have blood left over!! So, we'll see where it goes from here.

Nice to meet you, neighbor!!
Sharon

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Fibrobugsme

Discussion Starter · #12 · Mar 13, 2009

lazylegs;537983 said:
Hi Sharon,

Welcome to the site.

I took a gander at your photos. They are magnificent. You are definitely an artist.

Please feel free to post any questions you have in your quest to get a diagnosis. The members here are more than will to help if they can.

Take care,
Lazylegs

Thank you for the compliment!!! You've really made my day!!! I received an application in the mail today to participate in an arts and crafts show to sell my photographs and it's not until May 2nd. I want to do it. I guess the only thing that worries me is that I won't be physically strong enough to do it when the time comes. I should just do it and not worry. This is what I really want to do so I should just do it!! I haven't done any shows in the last few years. It's just been too hard and I haven't been able to get too many pictures either...walking is a real problem for me. My partner will help me with set up and all so I have that to count on and I won't have to do it alone. I have a lot of physical and emotional support and for that I am so very grateful. Very lucky!!

Thank you again,
Sharon

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Fibrobugsme

Discussion Starter · #13 · Mar 13, 2009

Katharine;538045 said:
Hi again Sharon,

It's a pity that you aren't being treated with anything other than pred from time to time. I mean, obviously, I don't know your whole story so your docs may have a reason for not wanting to do anything else just yet. Maybe there really isn't enough to support the "lupus like and systemic" but still, it does make me wonder.

I'm also wondering, if you're ANA has been consistently negative - It can remain negative for a good while and on some patients (only between 2 and 5%) never becomes positive - anyway, I'm wondering if it might not be worth asking if a skin biopsy could be useful. Occasionaly a biopsy of unaffected, unexposed skin (for example from the stomach or buttocks) can clinch diagnosis. It is not sure, nothing with lupus is, but is worth trying.

As for the questions on bloods.... well no-one can really answer that. There is no "norm" in lupus. Some of us will have very high inflammation markers at times and others will barely rise despite significant inflammation. My rheumy can "see" inflammation around tendons when doing an ultrasound for example and yet I rarely have any inflammation markers in bloods. The only time I did was before diagnosis and at that time she told me that it was no way near high enough to be from an autoimmune disease - turned out she was wrong as other tests then revealed. Since then she listens to what I'm saying and uses bloods to monitor other activity but doesn't presume I'm doing well because inflammation doesn't show up.

hope that helps a bit,
Katharine

Hi Katharine,

Good to hear from you again.

Right now I'm being treated for Fibro so I'm getting all the medications I can stand actually. Prednisone is the only one that isn't for Fibro. It's for the inflammation problem. I have my GP who is an Internist and my Rheumatologist working with me and right now I guess I'm just waiting to see what happens next. I have to get a CT Scan some time soon for my abdomen/pelvis. During my exam last week there were a couple of tender areas my doctor wants to check out. It seemed to be in my decending color and around where the sigmoid joins it I had another sensitive area. Probably nothing but she wants to check it out..I've never had a CT scan before so I'm a little rattled. I already have what they're calling my "smoothie" to drink before I get there.

Anyway, for Fibro I'm on Lyrica and Cymbalta and Hydrocodone and Ativan and Vit. D..and I think that's it. I take something to help regulate my heart rate too. I can't imagine anymore drugs.

I hope you're having a great day!!
Take good care,
Sharon

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