Fibro but "not Lupus yet"...? Is "yet" now?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ilsegrrl
Regular Member


Date Joined Apr 2014
Total Posts : 53
   Posted 5/12/2014 12:44 PM (GMT -6)   
Hi all,

I'm new-ish here (mostly lurking, posted a few times in various forums) and I know you guys are really good at answering questions or guiding to places with answers. I'm kind of worried about new symptoms and I am interested in hearing opinions and/or experiences from you guys.

After two years of deteriorating health (I'm 43), I was diagnosed with Fibromyalgia in February 2013 (by the end of the tender point exam, I was curled up in the fetal position and begging her not to touch me any more). At the time, my rheumatologist said I had a positive ANA at 1:160 (speckled), low C3, rheumatoid negative, low vit. D, borderline low calcium. "So," she said, "You don't have Lupus yet, but we'll keep an eye on it." We've been medicating for the Fibro (amitriptyline, Zanaflex, Ambien, Nuvigil), I cut back to part-time at work, I've been doing light-to-moderate exercise for 20-30 minutes every day. I also have pre-existing Hashimoto's thyroiditis (over 10 years), but my thyroid levels are checked every 6 months and I'm where I'm supposed to be (and more importantly, where my worst symptoms go away, and after 10 years, I've gotten really good at guessing my TSH based on symptomology), and she said that the ANA might be reflective of the autoimmune thyroid problem.

Flash forward to the last couple of months. My symptoms have changed -- well, not changed exactly, but now I have a bunch of NEW symptoms I didn't have before. I'm more tired after doing less. The FMS pain always has been worst in/around my shoulders, hips, elbows, and knees; now that pain has continued, but it's moved down, so that I also have pain and stiffness in my ankles, feet, wrists, hands, and fingers. I get pounding pressure headaches that medication doesn't help, almost like a sinus infection except I don't have a sinus infection (I usually get 2-3 sinus infections a year, so they're a familiar beast). My skin seems to randomly turn pink in various places, like I have a sunburn except I haven't been in the sun (or even outside) -- upper arms, chest, knees, especially after exercising (and I don't mean RIGHT after exercising, I mean it's still there an hour later). It's worst on my face, on my cheeks, the end of my nose, and my chin, and it's also hot to the touch (although I don't feel hot or feverish). At the same time, my toes will get VERY cold (cold and painful feeling to me and feel cold to the touch) and turn pale, then get reddish as they warm up. These things come and go, constantly playing peek-a-boo, unlike the fibro stuff that seems like it's fairly constant. It'll be present for 30 minutes to 2-3 hours, then go away.

I know that FMS and Lupus are commonly comorbid (30%?) and that sometimes when patients have Lupus, they're later diagnosed with Fibro, but how often does it happen the other way around? I admit I kind of have Lupus on the brain because one of my friends was just diagnosed, but I haven't forgotten that "you don't have Lupus YET." At the time, I didn't pay it much attention because fibro was clearly the right diagnosis. So I don't know if what's been going on is just a new face of Fibro, or a different face altogether. My rheumy took blood again this past week and I'm waiting for the results. I'm set up with my endocrinologist to have a cortisol tolerance test later this month, too, to see if that's a factor. But the waiting is awful! How do you guys take your minds off of the tick-tock-tick-tock of the waiting game?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/12/2014 2:19 PM (GMT -6)   
Limbo is a terrible time. Try your best to distract yourself from worry and the What ifs. You'll deal when it when it gets there.
When I was first diagnosed I basically freaked out. Then I decided to face each wave as it hits me and don't stand there fretting over what might come. As we have all learned stress makes us feel worse.

I hope you don't have to deal with this monster too. Best of luck on the tests.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 5/12/2014 2:37 PM (GMT -6)   
Have you read about diagnosing Lupus? Check out the link in my signature below. You need to have 4 of 11 symptoms before most Drs with diagnose you. On the other hand, most rheumies will start you on Plaquenil and Prednisone to see if you respond (if so, probably Lupus) even before they mention a diagnosis.

It sounds like you need another visit to the rheumy to update her on your symptoms, or if you want a second opinion a good way to find a rheumy is this: Goto www.lupus.org - find your local chapter. Then contact them and see what local Rheumies work with them. These are the Drs most experienced in diagnosing and treating Lupus.

Best wishes
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 5/13/2014 12:26 AM (GMT -6)   
The progression of your fibro/lupus? Sounds very much like my experience. I was diagnosed first with fibro although I had suspected for years that I had lupus. I believe that doctors are very reluctant to give a lupus diagnosis till they are certain, even though they may strongly suspect it.

I've been told by two rheumies that a low C3 means active lupus. I agree with Joy that limbo is a terrible place to be, and also with Lynnwood that you should update your rheumy regarding your new symptoms. I'm surprised that you haven't been put on plaquenil.

Hang around and keep us up to date. This is a good place to be when you need support. Take care.
SLE, fibro, renauds, restless leg?

ilsegrrl
Regular Member


Date Joined Apr 2014
Total Posts : 53
   Posted 5/13/2014 8:50 PM (GMT -6)   
Hi folks, thanks for your answers and support.

I got my blood test results in the mail today. At least my liver and thyroid numbers are normal! ANA still positive at 1:160, now just speckled (no speckled/homogenous like last time). A few upticks/downticks on the sub-tests, but everything still in the 0-20 reference range. However, now C3 is normal, but C4 is low.

The only other thing that stuck out to me was my eGFR, which was low at 57. I wouldn't ordinarily be worried at this near-borderline number, but I looked back at my bloodwork -- it was 70 in May of 2012, 68 in February of 2013, 64 in February of 2014, and now 57, so it's fallen steadily over the past 2 years. On the other hand, at the same time, my creatinine has creeped up...from .8 in May 2012 to .9 in Feb 2013, to 1.0 in Feb 2014, to 1.1 now (BUN levels are stable in relation to creatinine, but are also rising in general). So...looks like my kidneys are unhappy for some reason. Why, Kidneys, why?! I give you plenty of water, and no bad stuff...and this is how you thank me? Sheesh. rolleyes

My glucose levels are fine (both fasting and non-). Haven't had my urine checked for anything diagnostically, but I assume that if this problem is kidney-flavored that urine tests are coming...I'm not scheduled to go back until August, and I don't know that these numbers are "scary" enough for her to pull me in before that. Maybe more tests? What else would they look for?

Post Edited (ilsegrrl) : 5/13/2014 7:55:30 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/13/2014 9:56 PM (GMT -6)   
Sounds like your kidneys are fussing.
Do you take a lot of NSAIDS? My kidney doctor won't let me touch them. She says they can weaken the kidneys.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

ilsegrrl
Regular Member


Date Joined Apr 2014
Total Posts : 53
   Posted 5/14/2014 8:22 AM (GMT -6)   
I take Duexis twice a day, every other day (800 mg ibuprofen with a coating of Famotidine/Pepcid to protect against stomach upset). It's the only thing that seems to help my muscle pain at all - I take both a long-acting and sometimes a short-acting opioid for back problems, and they don't help much with the Fibro pain. And my pain doc took me off of the blends of opioid/NSAIDS specifically because he said the NSAIDS are more potentially harmful long-term than the straight-up opioids (but he was thinking more about my liver).

My Rheumy told me a week ago that because I was clearly flaring, I should take the Duexis every day, but this was also the day the blood tests were done so the bloods don't reflect the upped frequency. But don't inflammatory issues respond better to anti-inflammatories? I thought I remembered reading where NSAIDS and steroids didn't do much for Fibro. But those little dose packs of steroids are like magic; my pain dwindles, my muscles feel stronger, I have more energy. I've had three packs of them in the past year, once because I had a terrible sinus infection but the other two were prescribed by my rheumy to help control Fibro flares.

Ugh, it's confusing. It almost sounds like she's *treating* me like I might have Lupus without telling me that's what she's doing.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/14/2014 1:53 PM (GMT -6)   
It's a big pain in the but when you have an inflammatory disease but can't take anti-inflammatories. :-p

I just found out I have arthritis in my fingers along with my lupus and my rheumatologist keeps wanting to give me NSAIDS.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 5/18/2014 6:41 PM (GMT -6)   
When i started reading your post, I had to look at the name b/c it sounded so much like my situation with the ANA positive 1:160 speckled pattern. That was about 6 years ago and I still don't have a solid diagnosis. I was reading on here today to perhaps get some answers. Like you and others, I am so frustrated. The worst thing for me is that this stuff comes and goes and is ruining my life. I never know when I am going to have a good day or a bad day.
Did you get a sed rate done? Mine goes up and down, the latest was 30, a few months ago, it was 70. But, my ANA has gone negative. I had one doctor at Mayo Clinic who felt I might have a case of seronegative RA b/c my hands were swollen and stiff.
I hope you get some answers soon. It sounds like you've had a lot of symptoms. You deserve some answers and relief.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 11:39 AM (GMT -6)
There are a total of 3,006,455 posts in 329,340 threads.
View Active Threads


Who's Online
This forum has 161835 registered members. Please welcome our newest member, scattycatty.
322 Guest(s), 11 Registered Member(s) are currently online.  Details
HeartsinPain, mattamx, mauricesr, LorrieL., physedgirl09, Admin, Bob in Elkridge, Works Out, SharonZ, CCinPA, ldog