Hi everyone.. I'm a 31 yr old female and I've been ill for over 5 years now. Docs once suspected Lupus, then turned to MS, then to Fibromyalgia, then back to Lupus, then Fibro again.. and so on and so forth. I'm sure alot of you have been there yourself LOL
Right now, I have a firm diagnoses of Fibromyalgia ONLY. But, here's the problem.. I've recently had two sets of bloodwork come back abnormal. They were both CBCs. In the first round, everything in the CBC came back abnormally low. My docs suspected that something had been mishandled at the lab or a mistake or whatever.. so we repeated it two weeks later. The white cell count and platelets were still low, but everything else went back up just to the normal range - very low normal, but nevertheless, normal. So, that tells us that the first set wasn't mishandled.
I've had the low platelets for the last 3 years. The hematologist diagnosed me with Idiopathic Thrombocytopenia Purpura. I've never had the low white cell count or anything else for that matter. BUT, here's the thing.. the day that I had the first CBC was a day that I felt like absolute hell.. a day that I typically call "a bad fibro flare day" and I have those days quite often. It was the very first time that we'd timed the bloodwork just right to catch me on a bad day. And those tests came back abnormal as opposed to all of the other tests coming back normal when I wasn't feeling so bad. SO, now we're looking elsewhere.. not just Fibro since Fibro itself doesn't cause abnormally low blood counts.
I've never had an ANA come back positive and as far as Lupus is concerned, I think that's the only test I've had done pertaining to it.. though I'm not positive.
All this started 5 years ago with extreme exhaustion and severe achiness all over. Since then, it's progressed to severe joint pain at times, and an aching sensation comparable to a toothache type of pain in my bones - mostly my forearms and lower legs. I'm getting weirdo rashes on my upper torso for the last year and nothing has lessened it yet.. not corticosteroids or even antifungal creams. It's very small little bumps that are itchy, slightly red, and all over my chest, upper back and neck, and upper arms. Not the typical Lupus rash, I don't believe. I've finally been referred to a dermatologist and will see her next month. Hmm, what else.. probable costochondritis which was diagnosed right in the office.. no xrays or anything. Arthritis-like pains in my knees, wrists, hips, and ankles that always happens on both sides of my body at the same time.. Tingling in my arms and hands, which is constant, and also the bottoms of my feet at times.
I do get something weird on my face every now and then that lasts a couple of days or so. It's only on one side.. the left side. It starts with a burning feeling and then gets really red, spreads to my left ear, my ear will get all red and swell up. I have to put an icepack on my face to tolerate it.This will last for a couple of days.. sometimes longer, but it will fade a bit then get worse, then fade.. it's very odd. My left earlobe is now noticably larger than the right one at all times.
Does any of this sound like Lupus to you?? We know that something is going on now since the bloodwork is finally showing it, but no one seems to know what it is.
Dee, Whenever I see someone write about recurrent rashes on arms & upper torso, on top of other symptoms, I write. So if this is a BIG BORE, please excuse. There's more than one kind of "typical" lupus rash. You need drs. who've seen the OTHER lupus rashes, too, like "discoid" and "subacute cutaneous". Maybe it's not lupus, but you need drs. who have seen enough to rule lupus in or out.
DLE (discoid) rashes tend to scar &/or depigment. With this rash, ANA is positive maybe only 50% of the time. (I've read varying figures.)
SCLE was first described only in the late 1970's. There are two forms of SCLE rashes: annular (circular), and a psoriasiform type that looks like psoriasis but isn't. It tends not to scar & depigment. It tends not to itch. It isn't as common as malar or discoid. ANA is positive maybe only 2/3 of the time. Anti-Ro antibody is positive maybe 2/3 of the time. (Rough figures...) People with SCLE often score a "4" or more on the ACR "4 of 11", but major organ damage is thought to be less likely than in classic SLE.
I had the annular (circular form) SCLE rash for many years. It took 4 years to "morph" into circles, though (stopped at "welts" in the early years). My suburban dermies & rheumies wouldn't have recognized it if it bit them, and urologist, gastroenterologist and GP were similarly stumped. The Manhattan rheumie I finally chose was STUNNED at their collective ignorance. In fairness, though, I was episodic---maybe 4 bouts a year, seeming fairly OK between bouts (except for persistent anemia & all sorts of other stuff ).
I'd definitely hope for a skin biopsy & full bloodwork (NOT just ANA!) if I were you. And hopefully done when you have a rash "on the rise" as opposed to old & fading. Give a holler anytime, OK? Meanwhile, all best wishes, Vee
My situation was similiar to yours a few years ago...I was diagnosed with Fibromyalgia and Lupus when I was 19, (which was 6 years ago). I was healthy pretty much my whole life up to age 17, when it seemed like overnight my energy level went to zero, my body ached all day everyday and no pain medicine helped. I went to my doctor almost bimonthly for 2 years until he finally did a blood test on me and I was diagnosed with Lupus and Fibromyalgia. I went to see a Rheumatologist after that,and he told me I had rashes that were typical of Lupus. Shortly after my diagnosis, I had to change health insurances, and doctors, and my new doctor said I didn't have Lupus.
Here is something specific I think you and I have in common, and I hope this will help you....
After being told I had Lupus then told I didn't, I was still in the same amount of pain and didn't know what to do or how to deal with it...since I was unsure of the cause. Do you have stomach problems??? I did, a lot, and through the course of conversation with a distant cousin, I found out she had celiac sprue disease. I won't go on and on about symptoms of this if you don't have it, but if you do have stomach and bowel issues, let me know...
The reason I say this is because people with Celiac disease will show a false positive for Lupus. And the pain connected with celiac disease is often mistaken for fibromyalgia, or you may have both.
If you have stomach issues, please post again, and I will give you more info on Celiac sprue....symptoms, diagnosis, and other underlying causes.
Veej, I do have an appointment with a dermatologist, but it's not until next month on the 23rd.. which sucks having to wait that long, but she's the only derm that my GP recommends. I'm pretty sure that the rash won't go away before then since it's been with me off and on (more on than off) for the last year. Hmm, maybe I should take pictures when it's at it's worst?
The reason I said that it doesn't look like the typical Lupus rashes is because nothing that I've found online pertaining to lupus looks anything like this at all. But I will let the derm know about all of my problems over the last few years so that she has more to go on.
The Rheumie that I did see a while back was a complete jerk. He said that I obviously didn't have lupus because of the negative ANA and that I didn't have RA because that test was negative as well.. and then the jerk said "I don't know why on earth your GP would send you to me.. obviously nothing is wrong with you". JERK!
Shizzlefritz, I do have some stomach problems, but it was diagnosed some years ago by a gastroenterologist as IBS. The only real issue I have with it these days is massive gas (yeh I know, how ladylike lol) and constipation. I used to have alot loose bowels with major cramping episodes and then be constipated for days.. it would go back and forth. I don't have that anymore for some reason. I've gone from being a once-a-day-er to maybe twice a week. I haven't been back to the gastro in a couple of years.
This is going to be long, but I have suffered from Fibromyalgia for almost seven years and once I found this out I have felt a million times better...sorry for the length, but I really think this could help you.
Okay now that I know you do have stomach problems, I'll tell you about Celiac...didn't want to go on and on about it, if it didn't apply.
Celiac disease is slowly becoming more known in the U.S. It is diagnosed a lot more in Europe, especially Italy. The bloodtest for Celiac spure is very very specific. A lot of doctors unfortunately haven't even HEARD of celiac, let alone the bloodtest you need to diagnose it. There are three antibodies you have to be tested for, and I apologize I don't remember them off the top of my head anymore, but I will look in my notes and re-post again. Many many times, people are diagnosed with IBS, Chrones disease, and other similar conditions when they do have celiac disease. Once you get that blood test, and one of the levels of antibodies is irregular, the next step for diagnosis is an upper GI. I had to have a scope go down my throat into my stomach to have I guess a biopsy.
What celiac sprue is, is an INTOLERANCE, not an ALLERGY, to gluten, which is a protein in wheat. When wheat is consumed, the little hairs in your stomach, (celia) stick together and lie flat along your stomach walls....causing malnutrition and many other things, i.e. gas, diahrrea, cramps, constipation and so on.... So the scope during your upper GI takes pictures of your celia, and if they are stuck together then you know you have celiac sprue.
I am very very fortunate to have a great doctor, who is constantly researching ways to help me, and to make sure I have an accurate diagnosis.
There is no cure for celiac disease, THE only treatment is to cut out gluten. Let me tell you...gluten is in almost EVERYTHING. Once I went gluten-free, almost all of my fibromyalgia pain went by the wayside, I had regular bowel movements, and my energy level that had been at ZERO for years came back, and I actually felt like a normal human being again.
I still have fibromyalgia pain, but it isn't at all what it was, and I am in the greatest amount of pain if my body gets cold. (Cold, rainy days are miserable for me.)
If you are interested in more information, let me know...I can get the names of the antibodies for the bloodtest.
I assure you, once I cut out the gluten from my diet, I felt like a new woman!
I hope this is of some help to you, I have a lot more information if you think it might be helpful to you...I just don't want to go on and on even more if you don't think it applies to your situation....good luck!
Hi Dee & Shizzlefritz. For what this is worth... I had severe IBS-like symptoms for 25+ years, so bad I was hospitalized several times for it. Had every appropriate test done & repeated. At the time I was finally Dx'ed with the SCLE subset of SLE, my city rheumie told me MANY people with lupus have GI problems. And---yes--once I started Plaquenil, my GI problems decreased enormously.
I think the problem in figuring out what GI problems "mean" is that they can occur due to so many things.
I didn't know there were specific blood tests for CELIAC, as Shizzlefritz just wrote---so it would make good sense for a dr. to try to rule Celiac in or out. But even if you got a "yes" to Celiac, if lupus-like symptoms persist, I think lupus also would have to be chased down. Best wishes, from Vee
Hi everyone.. Well just a little tidbit to add.. ana can be negative even if you have Lupus. My ana has been negative for the past few tests but I do have SLE Lupus, Fibromyalgia, raynauds and rosacea.. Not to say that it isn't celiac but that these results can happen. Its really important to find a Rhumie that cares about getting you better.. I've have come across many jerks and its frustrating, I wish we could tell insurance not to pay them because of how they act.. Also A dermatologist can determine whether your rash is Lupus related or Rosacea related.. I always thought mine was a lupus rash but it's rosacea so its easily calmed I just stay away from spicy foods, really intense heat etc.. although it doesn't hurt I understand how frustrating or embarrassing it can be..