I don’t have my first appointment with my rheumo til september. I haven’t been diagnosed with anything yet, and thats what scares me! I feel for you all, and think about you all daily! & I don’t want to be diagnosed with lupus. Or fibro! I’m still hoping deep down that theres an easier explanation than those diagnosis! Although, I know its not gonna be something simple, otherwise I wouldn’t be here in my life. Theres something obviously wrong, no matter how much I wish there wasn’t! Trying to keep up with work, and being a friend and with my family is way more difficult than it should be! I hate feeling this way! It’s a bad night of depression for me. I know I need to see this new doctor, but at the same time I don’t want to. I’m gonna hear some thing I don’t want to hear! whether I’m diagnosed or not. Either way I’m gonna be upset! I just had to vent all of this, as I have no one else to talk about it to. I hope this finds everyone in a good time! & thanks for letting me vent! 
I know it's scary to get a diagnosis of Lupus and Fibro, I have them both, as well as hashimotos disease. But, it's better than not knowing. That might be hard to understand right now, but believe me, the not knowing was making me crazy. I had started to wonder "Is it really all in my head" even though all of my labs/blood work were coming back all kinds of messed up. My doctor kept telling me, it's not in your head, there's something really wrong, we just have to figure out what it is. When he told me Lupus, I actually asked him, Ok, what do I do now, take antibiotics or something? If only it were that easy! I really knew very little about Lupus or Fibro at the time. I started to read everything that I could to educate myself. That's helped a lot, and finding others, like the people here, has helped tremendously. I hope you have a simpler diagnosis, i really do. Good luck, and please keep us posted. Have you had an ANA test done? You don't have to wait for a rheumatologist for that, you primary care doc can order it.
Tiffany89, it is just a bad night as you said. Don't worry, just breathe through it and be sure, whatever the results you will pull through it. Live the summer like it will never end, take the sun precautions, but, don't go over board. Stop thinking about Lupus, and just be happy. The appointment in September is far away, so don't worry about it until its time.
When I first recieved a positive ANA from my doctor, he got me in to see the RA in 6 days, I guess because of the high levels. Then when I re-tested for the RA, she said coldly, "No doubt you have Lupus" In hindsight, I could have used the two or three months to just digest information about Lupus, a disorder, I never heard of before, and time to just be happy. You have that time, as long as you are not becoming worse, if so run to the ER and they can test you there, but if everything is ok. Then you should be ok. DON'T worry.
Watch the clip of House singing "come on get happy" it has this dark humor and Hugh Laurie, actor that plays house, has a hypnotic tone for singing this song. It soothes me every time i hear it.
Hi Tiffany,
Vent away mate it's a way of releasing flustration with what your going through besides symptoms...don't worry we all get the same wheather diagnosed or not.
Even if you are diagnosed with it and 
crossed i hope you are'nt, you've suffered the symptoms for such a while now...your main benefit would be looking for meds to help ease the pain.
Things in life happen to us for a reason...none of us know why and we must carry on and try be as strong as possible, living on your own's not an easy task but try and learn to master issues because like yourself, you know i went through alot at 18 and since then finding i had lupus well it topped the lot for me but there's not much i can do but carry on and just hope when i see my new rheumo there'll be a med my body will take to.
Thinking of you so much Tiffany.
Hugs & kisses Terri xxx
Tiffany, my heart broke as I read your post. I remember the years I went through without a diagnosis, thinking I was nuts, and feeling so crappy. What helped me during that time alot was just living each day for what it was. If you think about the future and what may or may not happen just puts me in a place that takes me out of that precious day that i am currently living, which is in reality, the only day that counts...TODAY.
Love yourself as much as possible and stay away from those who make you doubt yourself, or the reality of your symptoms.
And venting is OK
Tiffany, This group is intended to give you support in your good as well as your bad days. Because we all are at various stages of the disease...been there, done that..could be our motto. So don't fear letting all your fears, feelings, and pain hang out. We truly understand. I have gotten tremendous help from individuals as well as just reading the posts. I had to wait over 3 months to see the rheumatologist and I have been doing what someone suggested - getting informed and being ready with my questions.
It is hard not to focus on your pain and your depression. Some days I just rest but other days, I call someone who needs encouragement and get out of myself for a little bit....and it helps. Your true friends truly care but most of those who observe us don't really understand our disease. And I've learned to say..."That is OK." Don't appeal to them for sympathy or understanding." Sometimes their responses cause more self doubt....which we do not need.
Go outside, get a breath of fresh air, look at beautiful flowers close up, be amazed at their beauty. The same God who created them made us...we are beautiful to Him regardless of our health. There is a purpose for our being here. Perhaps it is for others.. to learn to be caring, loving, and sensitive. Maybe they need to see we cannot function in our own strength, but need God's help moment by moment. To see one in illness carry on in a positive attitude.. displays courage ..endurance..and faith. Keep strong Tiffany and try not to be consumed by the "monster" that lurks at our well being. Together we are strong...so we lock our hearts and arms together to help each other.
Please don't give up....Continue to fight the disease. Hopefully you will have some answers soon....as I hope I will too. A big warm teddy bear hug your way....Faye
I got my preliminary diagnosis from my new Internist. She did her Internship with a Rheumie doing lupus and autoimmune research. She did the entire blood panel and not all the numbers were positive for lupus but the important ones were. Her first statement to me was 'You like pain don't you?' She started by saying that I don't have a heart problem or cancer, but that I had lupus. I never heard of lupus but knew it was something not to mess with from the look on her face. She started me on the meds right away pending appointment with the confirming Rheumatologist. I was lucky to find this doctor quite by accident. You might check around for an Internist or GP familiar with autoimmune disorders. I was able to get a very quick appointment. (I hope I made sense! lol)
Kadeeee What kinds of meds did your doctor put you on? My appointment is in 2 1/2 weeks and I would love to rearch some before I go in with my history of allergic reactions....if you don't mind sharing...
Dear Tiffany,
A Rheumatologist is not only the best one to go to to find out what you may have, but also to rule out what you do not have. Mine is a very kind and gentle man, who constantly reassures. I hope that you will have a wonderful one too. I wish you good things.
SK
Well i can't wait for my new appointment to see my new rheumo and have more bloods done again besides more tests.
Apparentley by what the sister told me he's Irish well i hope out lingo does'nt get messed up.
Tiffany,
I understand your fear and I remember that fear! Even now after all of these years I have a certain amount of fear when I go see my Rheumy or any of my doctors. I definitely had fear prior to receiving the proper diagnosis of Lupus. In the beginning I was diagnosed with Chronic Fatigue Syndrome, but it kept getting worse and worse and my Primary doc pulled back on that diagnosis in light of more symptoms closer to Lupus and Fibromyalgia. Sure enough I was diagnosed with Lupus and Fibro. Like Ann A., this was years and years ago (though 1/2 that of Ann's diagnosis) and most information to be had was not exactly positive with happy prognosis. It took me a while to get to the information that told me that I could live with Lupus and even raise my family while active with this disease.
I think that you have been a very calm and intelligent young lady by coming here and gathering information on a disease that was suggested to you by I'm guessing your Primary doc. You have vented to folks who care and will support you no matter what. If even for just a few hours this evening - - let US worry for you maybe. We should pick 3 or 4 hours perhaps where you promise not to worry and let us do for YOU! I'll take an hour or two and pray for you - send well wishes your way - while you hang out with some friends or take a nice bath or anything that you enjoy. Perhaps we can do this for you on a regular basis - it is what friends do! Maybe I'll need for you to do this for me someday too?
Also, it is okay if you cannot keep up with being perfect at everything - cut yourself a break and truly take a few hours off tonight. K? I will rest easier knowing that you are enjoying being you!
Draginfli
You have a wonderful heart, Draginfli!
Thank you everyone! I’m not so depressed today! Especially after reading these comments! Sometimes I just feel so stupid for feeling the way I do. And always think that I shouldn’t post my feelings! But you guys are always so kind, and understanding!!! Thanks again! & draginfli, thank you! So much! Hope everyone is feeling good, or even great!!!
I do the same. We soooo judge ourselves so much more harshly than anyone else. A little bit of self love is the ticket right. Have a wonderful weekend.
Hi SK, I hope today finds you feeling well, The medications she prescribed are:
Plaquenil 400mg per day,
Lipitor 20mg per day, Aspirin 81mg per day.
I'm not sure if the lipitor and aspirin is because of my age or if everyone is prescribed it for heart protection.
The Oxycodone is prescribed at 325mg per tablet every 6 hrs. and
xanax 1mg every 12 hrs.
I'm so afraid of addiction though, I take these only when I absolutely must to maintain a kind disposition or get some sleep. I don't know how the others feel about my not taking it as prescribed and would appreciate their input. Am I being a bad patient or because of addiction worries, is it okay to stay away from pain anxiety medication as much as possible?
I'm new with this diagnosis as well and am still feeling my way so pretend no official knowledge! lol
I agree with you all, Draginfli Rocks! Love you all! Kathy
Faye said:
Kadeeee What kinds of meds did your doctor put you on? My appointment is in 2 1/2 weeks and I would love to rearch some before I go in with my history of allergic reactions....if you don't mind sharing...
Sweetie! You should ALWAYS post your feelings and you are FAR from stupid for feeling them!
You just let us know what you are thinking and feeling and we are right here!!
Draginfli
Tiffany89 said:
Thank you everyone! I'm not so depressed today! Especially after reading these comments! Sometimes I just feel so stupid for feeling the way I do. And always think that I shouldn't post my feelings! But you guys are always so kind, and understanding!!! Thanks again! & draginfli, thank you! So much! Hope everyone is feeling good, or even great!!! :)
Wow - thanks Kadeeeee! That's really nice!
Kadeeeee said:
Hi SK, I hope today finds you feeling well, The medications she prescribed are:
Plaquenil 400mg per day,
Lipitor 20mg per day, Aspirin 81mg per day.
I'm not sure if the lipitor and aspirin is because of my age or if everyone is prescribed it for heart protection.
The Oxycodone is prescribed at 325mg per tablet every 6 hrs. and
xanax 1mg every 12 hrs.
I'm so afraid of addiction though, I take these only when I absolutely must to maintain a kind disposition or get some sleep. I don't know how the others feel about my not taking it as prescribed and would appreciate their input. Am I being a bad patient or because of addiction worries, is it okay to stay away from pain anxiety medication as much as possible?
I'm new with this diagnosis as well and am still feeling my way so pretend no official knowledge! lol
I agree with you all, Draginfli Rocks! Love you all! Kathy
Faye said:Kadeeee What kinds of meds did your doctor put you on? My appointment is in 2 1/2 weeks and I would love to rearch some before I go in with my history of allergic reactions....if you don't mind sharing...
Oh, I forgot, In the beginning, she gave me steroids for I think a week. Haven't taken them since. There are numerous others intermitently (sp) for symptoms control. My memory is ridiculously nonexistent. I was once quick witted and able to think on my feet. Of everything, I think I miss my brain the most!
Tiffany, I feel silly for my emotional upsets and am a lot older than you. I thought I was aging well. I stayed active and participated in life before this. Just this week, my daughters invited us to yesterday's Raging Waters outing, to a Dodger Game on the 4th, to Sea World for their birthdays on the 14th and I can't do any of that. It's sad. Now, I'm hoping i'm going through a mourning process and will soon be able to accept the new me and move on to my happy place. Maybe I should take those friggin anxiety meds! lol
Kadeeeee,
I know it isn't funny, but you did make me laugh - because I agree with you! Of everything it IS my brain that I miss the most too!!! :)
I do take the anxiety meds when I feel myself not wanting to accept me and go to my happy place! :)
BTW - Do you guys have any indoor water parks in the area? Something like that? Not that my body could do any of that - but you know what I mean? Maybe at least you could be there?
Draginfli
Kadeeeee said:
Oh, I forgot, In the beginning, she gave me steroids for I think a week. Haven't taken them since. There are numerous others intermitently (sp) for symptoms control. My memory is ridiculously nonexistent. I was once quick witted and able to think on my feet. Of everything, I think I miss my brain the most!