Hello everyone! First of all, thank you for accepting me as a member. I greatly appreciate it!
I'm 31 years old and have dealt with health issues about half of life. I got diagnosed with fibromyalgia in March 2000. Back then, the doctors were unsure how to treat me. Over the years, I've had really bad flare ups with I couldn't even bend my arms or move my legs because the pain was so overwhelming! Then I would go through periods where I was fine like I was in a remission or something. Over the last 2 years I've had some symptoms, but I couldn't associate any with fibromyalgia. I finally decided to see a rheumatologist over a year ago, and he confirmed that I had fibromyalgia as well. Back in March 2013, I went to the ER because I was having horrible chest pain and thought I was having a heart attack. My heart was fine. My pulse was elevated, but the tests showed nothing. As I was lying in my hospital bed, the nurse pointed out that I had a low-grade fever and these mysterious rashes on my arms. I've had them for awhile and thought nothing of it. I continued to lose hair, but I slowed it down with the help of multivitamins. I keep getting sores in my mouth which I thought were canker sores. The fatigue has been overwhelming as well, but I contributed that to my depression. The chronic pain has increased and is barely being controlled by hydrocodone and nsaids.
So this past week my rheumatologist discovered a "protusion" on my back which was causing me great pain. I didn't take any chances and had my primary physician remove it and biopsy it. The biopsy showed I had an abnormal lymphocytes or at least, I think that's what the doctor had called it. He kept saying "lupus". He talked to my rheumy doc and they both came to the decision that I have lupus, but I need blood tests to confirm their diagnosis. My rheumatoid test came back fine, but my sed rate was very elevated. I haven't talked to the doc yet as I only viewed my results online through my patient profile record where I can see test results. So does this mean that I have lupus? I was curious how everyone else got diagnosed and if blood tests were used. As I put all the symptoms together in my head, it makes complete sense, but fibromyalgia mimics this disease as well. I have so many questions. Could I pass lupus onto my children? Can I even have anymore children? Will this diminish my quality of life even more and does it cut my lifespan? What kind of medications can I expect? I guess I just want answers because I'm so scared. Thank you for reading, and I hope everyone has a good day:)
Hi, my name is amber I’m 37 and was diagnosed with lupus almost 2 years ago. At first my regular Dr said it was RA which for some reason I was okay with. I was thinking okay I can get this under control and be good?? I went too a rheumy and with all of my symptoms and blood work he said that I was really sick. I was so scared, my kidneys were only working 25-30% the bloodwork came back and it was lupus. I was in so much pain! I literally got stuck on my bed on my stomach because I couldn’t even turn over cause of the pain!! I wish you the best of luck and I know it’s scary and remember too talk about it!!!
I understand your fear. Take this one day at a time, and breathe. I also have fibro, our lupus loves company. Being diagnosed, is so much better than going undiagnosed and not knowing why you feel the way you do. You'll learn how to take care of yourself, and how to manage this. Lupus is not infectious - but its possible if you have it - your kids could develop it later. And not all, and maybe not even any. Because they don't know what causes it, they don't know. You've come to a great place, and once you have settled down - you can take charge of you life and manage your lupus, by diet, exercise and rest when you need to. I'm glad that you're here, and you've shared your feelings....
Hello.I am Nancy 52 from Tx. Don’t be scared my friend, you well have a lot of support here people do care. I have had lupus and fibromyalgia for 3 yrs now .I just stoped working march of 2013.due to my illness.don’t let this take over your life. Just eat right walking swimming and any light exercise well help.listen to your body rest when you need to and don’t over do it .your precious children well be okay .doctors still don’t know what causes lupus but they are working hard to develop new medication .don’t lose hope .LISTEN TO YOUR BODY REST EAT RIGHT HAVE FAITH AND LIVE YOUR LIFE.DONT LET THE ILLNESS TAKE OVER .
I was reading about you and it almost sounded like me.
I don't have fibro. I had low-grade fever and rash didn' look like my lichen planus rash so the derno. biopsyed it. The fatigue is overwhelming also. My biopsy said abnormal lymphocytes and my ana is positive. I had hair loss and mouth sores in my mouth. My sed rate is also high. I have been on plaquenil for 14 mnths.now. The mouth sores are gone and my hair loss has stopped. The plaquenil gave me diahrea, but it is better than the mouth sores. To make a long story short I went on a probiotic (otc VSL#3) and the diahrea has stopped. The rash on my extremeties is very bad but I am sun sensivity so .noone sees it anyway. I don't know if you can have any more children , but in my case I'm glad(I'm 72) LOL Take care of your health. Get the best care you can. Keep track of all your sympoms whether you think they are important or not. We are here for you. Stay Positive.
Hi Sherbear From what you have told us I thinks that you have both SLE and Fibromyalgia. I have both and IBS which is also associated with fibro. With Lupus its possible to have other Autoimmune diseases, don't be scared both can be treated
and these days can be controlled, get second opinions also because lupus does mimic other illnesses too and go online and find the Lupus foundation site and also the arthritis foundation where you can get more info. If you get the right care your
lifespan will not be an issue! and anyway Lupus isn't necessarily fatal. I have Lived over Twenty odd years with both so you will be Ok
I was diagnosed with nodules, growths as well as blood and other tests. I am not alone i know in this....and i do have sle not discoid. they did think i had cancer at first...had about 5 removed and they grew back. Hurt when they grow.
FIrst one was size of pea in one month grew to size of quarter so i went in to urgent care one weekend.
I had other symptoms of lupus that i was not aware...i just knew i was sick often like my brother who doctors did not know what was wrong with him. So in about 5 months lupus was diagnosed...and more diagnoses down the road as rheum discovered more things.
You might end up being luckier than others as with mine it was very clear cut due to having biopsies they could see and double check. BUT again, ana and other tests were also going along with lupus and RA i was diagnosed with both at same time...my feet starting having joints grow together and other joint issues in my feet etc.
good luck.....you can expect normal life span and at your age, odds are they will have either cure or ways so lupus does not affect you life near as much as it has mine and others in their 50's now. I was diagnosed in about 80...they really did not know much at all, no rheum...they were rare and hard to find.
So you will have it much easier...lupus foundation of american has great site that can answer all your questions plus you can call them and they will help you to understand. try to not worry...most of us have fairly okay lives...and you should have it lots better than us!!
In 2011 I had a huge grapefruit size tumor called a lipoma removed from my right hip and it hasn’t recovered since. I small ones in my groin area but that big one was very painful! Biopsy showed nothing. I had major back surgery in 2012 following a car accident and nothing has been the same since. I got several staph infections through several operations. That’s when some of these symptoms I’m experiencing that are indicating lupus began and haven’t stopped. Thank you for sharing and I’m sending positive juju each of your ways:)
I was going to say you get up early but you are probably in a dfferent time zone.It's funny you mention small growths because I have them too but they come and go.I just thought they were part of one of my other skin diseases, Lichen Planus. What hospital were you in to get staph infections. When I see hospital personnel not washing their hands enough I let them know. Rheumy decreased me plaquenil to 2 a day. f my mouth sores come back or the inflamation get worse I am to go back on 3 a day.
I live in WI. I have many nights where I can’t sleep because of headaches and horrible muscle pain and joint pain. When I was diagnosed with the lipomas I was told the little ones should be fine. I believed this until last week when I had a small nodule removed from my back and the biopsy showed an abnormal amount of lymphocytes in the tissue sample. How can one small lump hurt so much? I’m just waiting to get a second opinion and go from there.
Thank you everyone for your replies:) I greatly appreciate all the advice I’m hearing from all of you and it definately has put me at ease. As I reviewed my latest labs I don’t think the doc ran an ANA test on me. I will definitely discuss that with a new doc I’ll be seeing. I’m just tired from being on narcotics all day long that aren’t really helping me anyway. I was contributing memory loss and not being able to get clear thoughts out on the pain medication itself along with a car accident that I was injured in a couple years ago. And everyone is right about how conditions can mimic lupus, fibro and so on. I wish everyone good healing thank you again for being such a great support system!
I was attributing my memory loss to the car accident since I got severe whiplash and my brain got a good shaking. It hasn't been the same since. I can't get complete thoughts out sometimes, and spelling simple words has become more difficult but I've been saying that's old age. Either way, all of this isn't normal.
I know what you mean about "not completing thoughts" and not being able to spell simple words. I was attributing it to "old age" but I guess its what they call "brain fog". In a year and a half it hasn't got any worse, I guess that's good.
Go Talk to your doctor get other opinions as well it sounds like lupus and fibromyagia. I have both and its better to get a proper diagnosis so they can treat you. Also go to the lupus foundation website you can get a lot of info and get free booklets on the subject. You can have kids and lupus does run in families but its not like a virus no one can just catch lupus. Not sure if your children can develop lupus you would have to talk to a doctor about that. Lupus is not fatal it doesn't mean a death sentence unless you have complication with infection and internal organs but that only happens if you don't get the right care, and you have other medical problems as well plus drinking smoking and doing drugs will really make things worse. But if you take care of yourself get the right treatment and pace yourself you'll be ok!. I have had it for over twenty years it almost took that long to be diagnosed but now with the right care im ok and so will you. They usually prescribe an anti malarial drug first like Plaquenil then maybe cortisone or some immunosuppressant drug depending on if you have mild or organ involvement. But don't worry you will feel much better once you get the right medications. Also you can join the arthritis foundation. Take care
