Hi everyone, I'm a bit freaked out so I'll try not to ramble. I have Fibro and have for years - now Lupus is suspected. Just had some bloodwork done last week and doctors office called last night to tell me they were referring me to immunologist based on the results of tests. They would not tell me anything on the phone so I have to go pick up copies today. The fact that they suspect Lupus is not really new - it's just that the test numbers never really added up to enough as well as the fact that I got frustrated and stopped looking for answers. So now I'm very nervous - I already take meds for fibro and now what?? More meds?? The reason I went back to the doc recently was for a number of symptoms I've been having that I just couldn't ignore. Also I get rashes (sometimes horrible) in the sun but recently they have been popping up all over and I don't feel well either when I get them. Anyway I won't go into all that right now but I would love to hear from others that have Lupus or both Fibro and Lupus. How do you handle this? I'm a bit of a wreck. Thanks everyone!
I have both FMS and lupus. I'm primarily treated for the lupus with prednisone and plaquenil. I do take cymbalta to help with the fibro pain. I also have many skin issues. Have you had the skin rash biopsied? That was how I got my lupus dx. Have you been to a rheumatologist? They usually know the most about lupus and other autoimmune diseases. Good luck to you.
Last edited by heidiclouser; 01-26-2010 at 06:01 PM.
I also have fibro, and TLE a form of CLE and borderline SLE, and Hypothyroidism. I am on meds for all of them and they work well together.
Plaquenil for the Lupus, Cymbalta for the fibro, and levoxl for the thyroid.
There are many ppl where I work that have fibro and lupus, and have been treating as I have and are doing great.
heidiclouser - I have not had the rash biopsied yet because for of course I either don't have it at the time of my visit or I can't get in when I do have it.
I posted another question on here for that reason - I was wondering if a tanning bed would cause the rash like the regular sun? I don't want to do it as it can be quite painful and send me into a terrible flare but I'm at the point now where I'm considering it so they can see it and do the biopsy.
teeha - Is Plaquenil a steroid? I am so afraid of them. Do you have any side effects? I cannot take any antidepressants due to severe side effects even at low doses so they are out for me.
Thanks to everyone so far!
Ya Like Heidiclosure said Plaquenil is an Anti Malaria drug. I have trouble taking steroids, I am highly allergic to them. One thing you can do is take a pic of your rash for the doctor since it seem to leave before U can see the doctor. This way they can have something to go on.
kdel, On what symptoms did your drs. diagnose fibromyalgia?
You don't have to answer that, of course. What happened to me is that all my symptoms, over decades, made my local drs. think I had ONLY fibromyalgia, because almost all my symptoms could occur in either condition.
But I finally got a problem that could only mean lupus, a lupus-specific rash. The last dermatologist I saw did deep-punch biopsy *PLUS* immunofluorescent stain tests. In lupus, these stain tests often (but not always) light up in unique lines. In lupus, your immune system is malfunctioning and depositing "immune junk" between the outer/inner layers of skin. The stain tests "light up" those deposits.
My rashes lasted a month, often longer. What about yours?
Like Heidi wrote, rheumatologists know the most about lupus! Further, my rheumatologist selected the dermamatologist he wanted me to see. Hope something here helps, Vicki
The Following User Says Thank You to VeeJ For This Useful Post:
Hi Veej, my Fibro diagnosis was years ago and symptoms were widespread pain, fatigue, muscle weakness, and just feeking horrible and flulike for months (ironically following the worst flu I ever had) The doc did bloodwork at the time to rule out other things but also did the trigger point test and I had all of them. I didn't want to believe it so saw 3 different docs back then and they all said the same thing. This was over 10 years ago.
Now for the past few years I have had joint pain and swelling, rashes that come and go, severe headaches and dizziness and strange attacks of sudden blurred or loss of vision (usually one eye) along with muscle weakness, and feeling sort of spacey - this happens every time I go to the supermarket and someone else said it may be the flourescent lights. Now the rashes I get from the sun are horrible - I get blistering rashes that also cause pain deep inside the area as well as what I thought was a really bad fibro flare. These last a long time, maybe a few weeks or so. I also get other rashes though as well as lesions that just pop up at of nowhere and take a while to go away. I'm sure I'm leaving stuff out but am in kind of a hurry here. So what do you think? Oh also I have now had some bloodwork come back abnormal -
Anti-nuclear AB - equivocal
Anti- nuclear AB titer - positive
ANA pattern - speckled
igm serum- VERY high - 962 - normal is 48-271.
kdel, NY is a BIG state with many drs. Without asking for personal info, like where you live, I'm curious if you've tried *metro* drs. affiliated with teaching hospitals. Because of the "law of large numbers", they see a huge range of diseases, and low-odds presentations within each disease.
You need drs. eager to roll up their sleeves, not reluctant! Have you been seeing the same cast of characters for a long time? If YES, maybe it's time to make some changes, if you can, that is? Best wishes, Vee
P.S. I expected more of the same when I switched to metro drs. Instead I got help very quickly, and they made it look like a walk in the park. And I was disgusted with myself for running in circles locally for all those years. What was I thinking?!?
Last edited by VeeJ; 01-30-2010 at 08:18 AM.
Reason: added PS
Hi Veej, no I haven't tried teaching hospitals - how do you do that anyway? Just call up and say "Hey, here I come! " (sorry, just a little humor) But really do they just see you even if your doc has not referred you? I do not need a referral as far as my ins. goes. Also I live in upsatate NY not in the city and really can't seem to find anyone in the area which doesn't surprise me. I have not actually seen any specialist in a while - just my primary. I do really like him and he did admit that this is out of his area of expertise which I respect. The doc he just reffered me to (immunologist) is because of this damn high igm serum. The other bloodwork was done a couple of years ago by an infectiouse disease doctor (because I kept getting shingles over and over again - or so we thought) I really liked this doctor as she spent alot of time with me and ran the bloodwork even though it's not her area of expertise. She also told me I could come to her again for this and that she would biopsy the rash I get in the sun. She was highly suspicious of Lupus BUT she's not the doc to go to for this right? She did seem very knowledgable about autoimmune stuff. Anyway, did you see the bloodwork I did post? Any feelings on that? Thanks again.
Kdel....call the doc's office and make an appointment. It will probably be a group of rheumys so ask who the lupus expert is. You might have to wait awhile for an appointment. Many of us drive great distances to find the right doctor. I drive 3 hours round trip but he is worth it.