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New Lupus Patient -- questions, questions..................

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Posted 5/31/2007 7:45 PM (GMT 0)
Hi everyone. I have just recently been diagnosed with fibromyalgia, connective tissue disorder (nameless!!?) and 95%+ positive for Lupus. This all after spending 4 1/2 yrs, and countless hours at numerous specialists to see why I have been feeling so crappy. I am currently approaching 39 yrs. and the mother of 3 young girls (13 yrs., 9 yrs, and 5 yrs.) and have always been in great health and extremely active up until 4 1/2 yrs. ago. LONG story, short, docs. had been testing me for MS but MRIs were always clean (thank God!), do have hypothyroidism. Neurologic symptoms of tingling, aches, pain in both legs and arms and neck and at joints in hands. Fatigue is just about crippling. Do not have ANA antibody in bloodwork, but, have Anti-sm and and Anti-rnp antibodies (both of which are high). Recently developed a rash on backs of arms. Have been taking 40 mg. Prednisone for about 3 weeks -- doc will start to wean me down to 30 mg. for 2 wks, 20 mg. for 2 wks., 15 mg. for 1 wk. until I see him again. Yesterday was also put on Plaquenil (sp??) for the Lupus. I know that all Lupus patients/symptoms are different, but, has anyone had anything similar happen to them?? I know that worse things could happen, but, I also want to be sure that I do my homework and get hopefully, get back (or near) a place where I used to be. Thankfully, I have an incredibly supportive husband, family and friends. Any insight would be GREATLY appreciated!!!
Posted 5/31/2007 8:30 PM (GMT 0)
Hi Tammy. Your story sounds a lot like a lot of ours. I am 46 and was also extremely active until a couple of years ago. I also have the aches, pain, and fatique along with fevers. I still don't have a firm diagnosis, just UCTD. They suspect lupus and/or scleroderma. I do have an elevated ANA. Like you said, all patients are different. I didn't see in your post if you were seing a Rheumy. If not, that would be a good idea with all of your symptoms. You are blessed to have a supportive family. Welcome to the site. You will find a lot of helpful caring people here whether you have questions or just need to vent a little.
Posted 5/31/2007 10:18 PM (GMT 0)
Tammy,
I too am 39 years old mom. I too struggled for YEARS to get a diagnosis. For a long while they did think MS, but my MRI's came back clean as well. Was convinced after neuromuscular specialists, neurologists, internests, ect. that I was crazy. Nothing was wrong with me, it was all in my head.

I had/have tingling, numbness, weakness, fatigue, memory loss, confusion, anxiety, panic attacks, muscle pain, joint pain, rashes, hair loss, severe long lasting migraines, depression, hypotension, swollen glands, fevers. Sometimes one at a time, sometimes (rarely thank goodness) all at once.

Finally last year my ANA came back elevated and speckled. Was sent to a rheumy.. who diagnosed me pretty much on the first visit. It is still labled Undifferentiated connective tissue disease. My rheumy lables it that unless there is major organ involvement. She did give me tons of literature and websites on lupus. I am on plaquenil as well, but have not yet had to take prednisone. I am having such a time with plaquenil and digestive complaints though, that she is talking about starting me on methotrexate.

I am happy you found us here, it is such a wonderful place. Its full of warm welcoming helpful people who know what your feeling and what your going through. I start my mornings with a cup of coffe and this great little meeting place : )

Welcome.

Darlene
Posted 5/31/2007 10:37 PM (GMT 0)
Welcome. You are not alone. I think most of us have similar experiences. I personally had symptoms for a year. Then rash broke out. This is how I got diagnosed with MCTD. Then later Lupus. I am taking Prednisone 10mg and Cellcept 2500. I used to take Plaquenil, but I had Plaquenil toxicity. The doc then stopped me from taking it. Lupus can have many kinds of different symptoms, but it is controllable. Sometimes is good and sometimes is bad.
Feel free to ask questions. Hope to see you again in the forum.
Posted 6/1/2007 12:24 AM (GMT 0)
Hi Tammy, Sorry to hear you are having a lot of health problems but hope you get some answers soon. Waiting for the diagnoses is the hardest part but we have to realize it takes time. It sounds like your doctor is doing all the right things and hopefully this combo of meds will get things under control for you and you will start to feel better soon. Plaquenil is a med that is used with lupus, sjogrens, etc. It is the mildest of the "lupus meds" with the fewest side effects. I hope it works well for you, it helps with my fatigue and joint pain.
Posted 6/1/2007 12:37 AM (GMT 0)

Hey Tammy - Welcome!!!

Lupus isn't the greatest thing to hear but at least you are getting close to an answer.  The minute my doctor (GP) suggested Lupus, I thought - YES - that's why I'm tired, that's why I'm sore and the arthritis, omg yes!!!  My sister has Lupus too... don't ask me why it never occured to me but I never connected the dots...heck, it takes doctors years... lol.  I agree too about getting a rheumy if you don't have one.

You may never get your energy back full force (((sorry)))... We all have bad days - that's just the way it is.  Listen to your body and when possible, rest when you need to.  I think that if you do push yourself, eventually, you DO have to rest...and then it hurts more... lol.

I'm sure someone will post the link to the Spoon Theory for you - get everyone you want to understand how you are feeling to read it...  Even if it doesn't apply to you on a daily basis, I can guarantee that it is exactly how you DO feel some days...lol

Be well and Stay Strong :)

Sands...

Posted 6/1/2007 1:12 AM (GMT 0)
Wow! Thanks for the quick feedback! Don't mean this to sound bad, but, it is nice and refreshing to hear similar stories. Darlene, our cases sound frightenly similar. I have experienced almost all of the same symptoms and like you, saw just about every "ologist" that I knew existed, and still came our of each appt. thinking that I was going crazy and that it was possibly all in my head. I am seeing a Rheymatologist (I'm not crazy about him, but, they are pretty extinct here, so right now, I am taking what I can get). He is a good doctor, just VERY reserved in his bed-side manner, but, so far has been aggressive in the treament of this "whatever" tissue disease/probable Lupus!!!!!!! I am not liking being the prednisone side effects, and the plaquenil does give me a crazy stomach, but, my doc told me to try it for 4-5 days to see if the side effects diminish -- here's to hoping.

thanks again for the warm welcome -- this feels just like heaven to know that I am not alone in this and that I am not an actual nut case!!!!

Tammy
Posted 6/1/2007 1:56 AM (GMT 0)
Hi Tammy,
Another welcome coming your way! I'm sorry to hear you probably have lupus, but glad you found us. This is a great group of caring people that will help you in anyway possible.

It sounds like your doctor is trying to get your symptoms under control. I hope the meds work well for you and you start feeling alot better soon.

Look forward to hearing more from you soon. Please keep us updated and take care. You will be in my thoughts and prayers.

Babs
Posted 6/1/2007 2:36 AM (GMT 0)
Hi Tammy, I'm having a kind of rough night so I won't say much but I just wanted to welcome you to the group. I know you have gotten alot of support already from the great people here. I just didn't want to get left out on the Welcoming committee.

Hugs
carol
Posted 6/1/2007 3:17 AM (GMT 0)
Carol, thanks so much for the welcome! Sorry to hear that you are having a rough night -- I can certainly sympathize..........I appreciate the quick note --this site has put a smile on my face quite a few times today -- I can certainly get used to that!!!

Be good to yourself~ Tammy
Posted 6/1/2007 5:03 AM (GMT 0)
Hi Tammy, A big warm welcome from me too. I'm so happy that the forum has helped you today and I hope you'll keep coming back and smiling some more. It's a great place full of wonderful folks who all know what you're going though. Good luck with your diagnosis, and especially good luck in feeling better soon.

Carol, I'm sorry you're having a rough time tonight. You talked earlier about being pain free today but very tired. I hope you haven't taken a turn for the worse. I'll look for you tomorrow, in case you feel well enough to post.

I'll keep an eye out for you too Tammy!

Pat
Posted 6/1/2007 7:15 AM (GMT 0)
Tammy, I recommend reading THE LUPUS BOOK by Dr. Wallance. It can be a big help. You got lucky in getting a dx as fast as 4 1/2 years although I know that feels like forever when you are dealing with the pain, fatigue, and absolute terror associated with having no clue what is wrong. I waited over a decade between when my symptoms began and my dx. I have a negative ANA but when that came up negative no one was willing to look further. I finally found someone willing to help. We think the reason I am in the condition I am is because it took so long for dx and tx. I would likely be doing much better if I had been txed sooner. As it is I developed other problems and complications. I wish you the best of luck and hope that many more who understand this disease well will come by and give you more information. Right now I am in a flare and dealing with having court over my SSI on Monday otherwise I might be more help. I basically dropped off the face of the earth for several months while I tried to just hold on and keep going. I finally found the energy to come to the computer again and it has been so much help. With that thought I need to stress the importance of support. You need to have people who understand what you are going through. I suggest you stick with here and also look for a local in person support group. Also I would have your husband/significant other talk with someone who understands lupus well and can explain how bad it can get and how good it can be and that it is unpredictable. Then I would sit down your oldest child because she is old enough to notice and to understand. There are resources to help. She is going to create horrible ideas if you don't give her the truth worse if she hears lupus she might go and get old information back when it was a death sentance. I would consider telling your middle child at the same time. Your youngest is simply too young now but needs to know you are not completely well. The medications are kind of a clue off. You will see from my signature the progression my disease and medication took. My case is unusual. My family has heavy tendancy toward autoimmune disease and a lot of those who get them die of kidney failure because they don't get dxed until it is way too late. I am lucky my kidneys seem okay but I will seen a kidney specialist next month just to be sure at my rheumy's insistance. I suggest you get really good terms with your pharmacist- have a 24 hour one- and your rheumy. Find a good pcp too who is willing to work with your rheumy I am still hunting for that. I also advise that you keep a list of medication, allergies, and diagnosies in your computer for easy changes and put the update date on it. Print several copies. 1 goes in the glovebox. 1 in your purse or wallet. 1 to whomever you trust to make medical decisions if you become unable- make some legal document so they can do this no matter what and make clear your wishes in this document so no legal battle can be an issue later- and 1 to each doctor on every single visit. It is the fastest way to update them on changes. You need to have your allergies tested because if you are having allergy problems it can make your autoimmune issues worse- find an allergist and get tested and then do what they recommend you need your allergies under control BUT NO ALLERGY SHOTS EVER!!!! Remember that allergy shots irritate the immune system, so no matter what the allergist says you can never have allergy shots- I got this from my rheumy and an immunologist. I wish you much luck.
Posted 6/1/2007 12:12 PM (GMT 0)
Redrose77 -- Thanks so much for the info. I appreciate any and all info. to try to understand this crazy, crazy illness!!! Sounds like I am lucky to have found such an aggressive rheum. He wants to attack this aggressively to see if we can stop the progression, which, after finding this site just yesterday, and hearing from so many people, sounds like I hit the jackpot with his thinking. I am very grateful! The side effects of the meds are less than wonderful, but, if there is any hope of getting my life back (to some extent), I am willing to try it. I like the suggestion of the list of meds -- it certainly makes sense, and to always have it on hand only makes sense. Sorry to hear about your current flare. It is amazing to me how isolating this illness is. I also feel like I go into hiding when I am not feeling well. Seems like the world just speeds by and I am just watching it. Just one more reason that I am so glad that I found this wonderful site!!! Best of luck on Monday at court.

Feel better~ Tammy
Posted 6/1/2007 1:17 PM (GMT 0)
Hi Tammy. I can see you have gotten some very warm welcomes and that you can already tell what a great and supportive group of people we have here. As you can see, a lot of us have gone through similar things. I'm a 40 year old mother of two (9 and 5) and went for almost 3 years of diagnosis limbo before I found a rheumy who would really help me. It is furstrating to wait so long to get a diagnosis and have a name for what is wrong. Just don't give up. The good thing is that you have a rheumy who is willing to treat your symptoms even if you hasn't given a name to your illness yet. I'm really glad you joined us and look forward to hearing more from you. Take care
Posted 6/1/2007 7:40 PM (GMT 0)
I am 30 years old and have had fibromylagia for probably 10 years but only dxd for the last 5 (I have an aunt who has been dxd with lupus for almost 15 years now). Over the last 5 years I've had symptoms which I could only discribe as inflammatory. I could feel the warmth/heat over various parts of my body at different times but it's not a fever and it would wax and wane. I have consistently had sore and weak muscles, fatigue/tiredness, tightness/soreness when breathing, sore ribs, and about a year ago I had some mouth sores and nose sores as well as bad dandruff. It has gotten much worse over the last 6 mo. I have had the chest soreness/tightness again but it went away. Lately, I have had inflammation on both sides of the inside of my cheek, very mild inflammation of one of my tonsils, and swollen glands that come and go. The only things that help are 600 mg ibuprofen, sleep, and warm compresses. My rheumy doc said he can't dx me as having lupus or another CTD because I don't have enough symptoms, I have no organ involvement yet, and the only antibodies I tested positive for were ANA and RF. The more specific antibodies were ALL negative. So, as of now, he's calling this fibro and UCTD. I am supposed to monitor my symptoms, check in with him regularly, and watch to see if this develops further. The problem is that I feel awful most of the time and I start a brand new job on Monday. I am trying to stay positive but I've been feeling very fatigued and I am having trouble coping. Also, nobody believes me that I am this sick. I have little or no support and I am scared that I am going to get so sick and I don't know what to do. This is so frustrating not having a dx and currently I am only on allergy meds and hydrochlorothiazide for high BP. I am also very overweight so I am scared if I ever need to take steroids because that can increase the blood pressure and diabetes. Thanks for listening to my story. This helps.
Posted 6/1/2007 8:40 PM (GMT 0)
Hippimom2 and Emily B.~ I just love coming to my computer and sitting down to see a new message!!! Thanks for input -- the similarity in our stories are freaky! I was interested in seeing the meds that you are on, hippimom2. I was on neurontin also for about 1 1/2 yrs. it did help with the pain and tingling, but, it made me so tired that I only took it at night so that I could get some sleep. I also had mono in 1986 and another bout with a "mono-like" virus in 2000 -- interesting! Also interesting to me is the fact that autoimmune issues are cropping up in my family -- my mother has been battling an illness that they thought was polymyalgia, was on steriods for over 1 1/2 yrs. and as a result, her system is all messed up. She still has pain, and they know that something is going on since her sed rate is always elevatede. My oldest brother has had ulcerative colitis since he was about 35 yrs. old, and I have a sister (48 yrs.) who has been having health issues centering around a thyroid. disorder. So, it is in my family, it just has a habit of showing up at mid-life..............talk about a mid-life crisis!!!!! Best of luck, Emily, starting you new job on Monday. Keep your head up and keep pressing on -- you will eventually find someone to listen to you and take you seriously!!!

Best health~ Tammy
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