[Barb G]

Hello everyone!

I'm new here, looking for info and support. I have been in chronic pain with all kinds of weird symptoms since 1989, including bouts of extreme fatigue and hypothermia, rashes, mouth sores and blisters, sweats, chills, etc. Have been diagnosed with Fibromyalgia since 1991 and more or less written off as being a mental case until recently (because everyone believed I was making up everything I reported) after I started experiencing TIAs, heart problems, thyroid changes, tendinitis and cervical dystonia and testing positive for antinuclear antibodies (1:320, speckled pattern) with changes in CBC (low lymphocytes, high granulocytes, etc.) I'm still not diagnosed with lupus --- GP thinks that is what it is but my rheumatologist hasn't committed to that diagnosis yet and the neurolgists haven't revealed their opinions to me yet. Because the doctors haven't taken me seriously, neither do my family and friends, so I am isolated with this and am here for support. I am so glad such forums exist!

Barb G
Iowa, U.S.A.

 

[pollianna]

Welcome Barb, we could be twins!! Plz read my thread newly diagnosed. I went through the exact same thing and just got a lupus type illness diagnosis that still could be Lupus. It's all so confusing. the worst thing is when we know the docs think were nuts were more inclined to act nuts and go to bits when frustrated. your in good company here, many of us have had a similar experience. hang in there. the treatment is more important than the diagnosis xxP

 

[Katharine]

Hello Barb and welcome

I'm sorry to hear what brings you here and sorry that you have had such a tough time being taken seriously.

The worst thing is that after years of that kind of reaction from doctors we then start to actually believe ourselves that we are hypochondriacs or just totally mad!!

It is essential to remind yourself from time to time (however painful that may be) of how you used to be, of how friends of your age are...and to reconvince yourself that what you are living with everyday is not normal. That often gives you the strength to fight and push a little more for answers.

I am hopeful in your case that you should now be a lot closer to some kind of diagnosis. Your ANA is high enough to be taken seriously and could well point to an auto-immune disease (of which lupus is one). Diagnosis is extremely complex and although, after years of being brushed off, we may feel like strangling the docs, it is very hard to diagnose. Many criteria have to be met as there is no ONE sure way of diagnosing lupus. Dagnosis will be made up of a mix of blood work (sometimes biopsies), clinical signs and medical history.

I really hope that you are now getting closer to something concrete and to treatment.

As to family and friends...I hate to say this but even with a dagnosis that can often be a tough one. Lupus and other auto-immune conditions can be so varied and so unknown that they often means little or nothing to people. Also, it is very hard for someone who hasn't actually "felt" the disease for themselves to feel the sheer exhaustion, pain, frustration and so on that we live with every day.

This forum is a wonderful place because people really DO understand and that means that often we can unburden our family and friends of certain things giving them the time to realise what is going on and to understand just a little more.

Please keep us posted on how things evolve and if we can help answer any other questions you have, don't hesitate.

In the meanwhile, here's plenty of cyber hugs to help you on your way,
:grouphug2:

Katharine

 

[Maia]

Welcome to the site, but sorry for what brings you here. I also live in Iowa!

It sounds like you've been through a lot the last 17+ years... but I am very hopeful for you that soon you will be on the right track and will be getting a diagnosis and the best treatment for your condition. There are a couple of us from Iowa on this site and we both are fairly happy with our doctors so if you need another doctor for a second opinion, you can write me to get some names.

It is very hard to explain to people how we feel... since they sometimes can't actually *see* anything wrong with us. I tend to explain it as having the flu, and have found people who have recently had the flu tend to understand it best. It's not always easier dealing with friends and family even with a firm diagnosis... but it's up to you to teach people how to treat you and set firm limits if you need to.

Take care and welcome again - feel free to write any questions you may have as you go through your appointment(s) and diagnostic process.

 

[keebler]

Hi Barb,

Welcome to the lupus site. It is a great source of information and very caring members.

It can get very lonely when you are not feeling well and no one seems to understand.:hug: Here you wont feel so alone.

I hope it turns around for you soon. Take care.

Another Iowan,
Lyn

 

[onetay]

Barb,
Hi and Welcome. We are neighbor's it seems I am in Illinois lol. Anyway, it is pretty common to have people not believe what you are feeling. It is also common to either be isoluted or feel that way as not many people understand even what lupus is. I know I had not even heard of it till the doctor told me that was what I had. I know that they are still kicking around what you have but don't let anyone tell you there is nothing wrong with you. You know how you feel and it does not matter if they believe you or not, at some point someone does and your whole life changes. I love the show "House" they think everything is lupus in the beginning. We can't even get our doctors to think it after years of treating us lol . I hope you join us in the chat room sometime soon. I also hope you feel better soon.

 

[Barb G]

Thanks everyone for your kind words. It is reassuring to know I'm not alone with this.

Barb G.

 

[Pink Pearl]

Hi Barb, and welcome to the board.
I was diagnosed in 1988, but had had off and on problems which pointed to lupus since somewhere around 1958.......yup, that far back. In my case, the doctors ran ana tests, but nothing else. Since I am one of the people who do not have ana's, but once they ran more labs, found that I am positive to anti ds dna, acl, apl, high esr, crp, and a few more. Insane that the people who should have known better, put all their criteria in ana's. I also had people brushing me off, since the dr's said there was "nothing wrong." I would say that is one of the uniting things about those of us with sle.

We are here to help each other in any way we can. Let us know how we can help you and don't hesitate to ask. The people and moderators on this board have a wealth of information.
Sally