Hi everyone. I'm Lindsey. I'm 33 years old, married, and the mom of three kids (Kenneth James 3/14/07-4-17/07, Grant 11/25/08, and Elise 11/7/77). I have a ton of questions, so please bear with me. :)
The past two years have been filled with all sorts of bizarre health problems, and I think we are finally on to what my correct diagnosis is. My GP finally thought to have an ANA drawn on me, which came back weakly positive (1:80, homogeneous). That was enough to get me a referral to a rheumatologist, who took about 10 tubes of blood last week. Most of those labs are still out, but my complement panel came back with a C3 of 65 and a C4 of 8. Combined with my long list of symptoms and that positive ANA, I think a diagnosis of Lupus is a distinct possibility. I should know more later this week when the rest of the labs come back. I'm a nervous wreck.
I work full-time as a high school Choir Director. It's a demanding job, both physically and mentally. I love my job, but it has become increasingly hard to be a working mom. I find that by the time I'm done with work for the day, I'm exhausted, running a fever, and in pain. I spend my weekends recovering from the work week. I feel like I am at the point that I can either be a mom to my kids or I can work, but I can't do both. I'm also noticing that it's getting harder to do my job while I'm at work. I'm having a lot of trouble with speech (words come out garbled or in a weird order), and that's a big problem when your job is to help kids to break down and understand concepts. Did you guys find that things like this improved once you got a diagnosis and treatment? I'm starting to really worry that I'm not going to be able to continue working full-time, and whether or not I should start trying to find a plan for short-term or even long-term disability while I get my symptoms under control.
Meds: I am reading some very scary things about the medications used to treat Lupus. How have your medications effected you?
Thanks for listening.
-Lindsey
What medications have you tried? Prescription meds are not always used- many of your symptoms can be managed with OTC meds, dietary and lifestyle changes. Many rheumatologists will manage the pain with Aleve or Motrin for instance. Not sure what your lab work means- when I am in a flare my serum complements are much lower - C3 in the 20's and C4 less than 3 A weak positive ANA can mean a lot of different things - one very common is just allergies Waiting is hard for sure and having a firm diagnosis does help- fingers crossed for you
Hi Lindsey and welcome! Your story is similar to many of us here including myself. Try not to get out too far ahead of this. I know it’s hard but try to stay in the moment. Have they run the Ana more than once? Sometimes it can be elevated for other reasons. Also, know that people vary widely in their resonse to the medications used to treat autoimmune conditions. I hope you learn more soon and that you can put your mind at ease until then. We’re always here if you need to vent!
All of what you have written sounds like the second verse of the same song for many of us. I found that without a skin biopsy reflecting results that are true to Lupus, I was not given a definite diagnosis. Instead, I’m being ‘treated for’ Lupus. Even thought all the symptoms are text book for Lupus. I still really do not completely understand that one.
For me, it has taken 3-4 years of getting rest and sleep (as the FIRST) priority to finally get me to a point that my symptoms are manageable and the best they have been in years. All this while I was working, which no one on earth can understand what that is like when symptoms are flaring. It is a nightmare. Personally for me, as my relationship with my Eternal Father slowly strengthened ( and continues always getting stronger) - is when I’ve noticed the slow improvement. He is my life line and for any that hear what I’m saying, I pray you can find the same thing.
My heart goes out to you, at somewhat the beginning of this for you. It is one hour at a time, then one day at a time. Hang in there. You ARE NOT ALONE!
Hi Lindsay,
Not to panic - even if you get a diagnosis of Lupus, having a diagnosis and getting treatment is better than just feeling awful and getting worse and no one can tell you what's wrong. This is a great group - you get lots of information. One thing I've noticed though is there are more postings about current problems people are experiencing than people posting about good days they're having.
The symptoms and labs you have so far are consistent with Lupus, but more have to be done to get a definitive diagnosis. Those are probably the ones you're waiting on.
I was diagnosed a year ago when I was still working full-time. Pain and exhaustion was what drove me to the doctor and got the lupus diagnosis. I have not had a bad experience with the lupus meds. I was put on plaquenil and prednisone and the pain stopped. I had typical side effects from the prednisone - i wanted to eat everything in site, gained weight, got a pumpkin face but.... the pain stopped. That was worth it. It took about 7 months for the Plaquenil to kick in, and then I was able to wean off the prednisone. Since I'm 59, I opted for early retirement and disability - honestly, i tried working part time but wasn't able to manage it. Everyone is different.
Like jeymj said, don't get ahead of yourself. Everyone's experience with Lupus is different. One of the women I worked with was working full time in a very stressful job. She managed that and 2 school age kids. You couldn't tell she had lupus. You kind of have to take it day by day and see what you can do without overdoing it. Find your limits. I think its a good idea to start exploring disability options available to you just in case.
As far as over the counter pain relief, I get the best results from good old aspirin, or I take either aspirin and alive or aspirin and tylenol. I put ice packs on muscles or joints that may be aching during a flare. That's the hard part about Lupus, sometimes you feel okay, then the flare hits and the symptoms you describe - like problems with words - get worse too.
Thanks for the reassurance. I really appreciate it. This is very overwhelming and scary, but maybe once I get definitive answers and a treatment plan it will be less overwhelming.
Dear Lindsey,
While you are waiting for a more definitive diagnosis, please understand that increasing your worry and stress will not help you regardless of what your final diagnosis is. Stress is a significant challenge for all Lupus patients, and it is the one thing that only you can control. You cannot control what your diagnosis is, or what your symptoms are, but you can control your attitude towards them and not allow yourself to become stressed. If you have Lupus, please understand that it is a different disease for everyone in that it has a unique presentation for each person. This is one of the reasons that it can be challenging to diagnose. My wife has been fighting a particularly difficult presentation for over 20 years since her diagnosis and still works full time. She is starting to feel the effects of multiple stressors that she can no longer control and it is beginning to take its toll. Stay in the present, get your rest, keep a good attitude, do not let stress control you, and keep posting.
One more lab came back funky. My SM/RNP came back at 3.1 (normal is less than 1). It looks like I am joining the Loopie club. I’m nervousness about what the future holds.
Stay in the present. Do what you can do, and do not stress about what you can't.
Lindsey said:
One more lab came back funky. My SM/RNP came back at 3.1 (normal is less than 1). It looks like I am joining the Loopie club. I'm nervousness about what the future holds.