Hi there I'm Lauren, I'm 30, I have 2 daughters, and I've been married for 10 years. I've had Grave's Disease for 15 years and was told I had MCTD about 2 1/2 years ago. I also fibromyalgia, chronic fatigue, and various heart issues. (Cardiac arrest twice) Just last I was told I have SLE lupus. I've always been told I have it as a child and a teen but it's never been fully diagnosed. I've been very ill the past 2 months, which I've been told is because the lupus is in a flare and I am now on prednisone. I've taken it many times throughout my life unfortunately but this has to be one of the most uncomfortable rounds with it due to the heart palpitations and shortness of breath. I'm really quite nervous about this disease to be honest which I was I suppose I'm here because I have no one to relate to. I've been through so much with my health since I was a child and it just keeps coming. Not having anyone to talk to or anyone to just listen I think makes this all that much more unbearable and alone feeling. That's my intro for now. Hope to hear from a like minded soul View Thread
Hi Sandy my name is Gina I have 6 children also I adopted 4 my fiance has 1 and adopted 2 I live with the pain of Lupus, I have multiple allergies, reoccuring sinusitis, reoccuring shingles, neropothy, nerve damage in my leg and a few other medical issues. I also lose my hair by the handfuls. Nice to meet you and I really needed to find this site tonight. Noone close to me can understand this pain or what I go through on the daily. Very nice to meet you.View Thread
I was diagnosed approximatly two years ago.I didn't date anyone until July of this year.I got back together with my love from my youth. We have a pretty good relationship yet I really feel my Lupus changes things. He tends to cling to his facebook as it seems he's afraid to hurt me more than I am hurting. There is no way he could understand half the pain I'm feeling. I hate that I fall asleep in the middle of the day.or when he wants to go out and I'm just not up to it and I go anyway.I sometimes feel I make him unhappy.He tells me how beautiful I am even when I'm at my worst. Maybe I should print out info on Lupus because he doesn't know much about it. I want our lives to be as normal as possible. It seems my Lupus is here all the time and it consumes me. I dropped a glass of tea all over the kitchen tonight and his nephew saw it happen I feel embarrassed.I am 43 and have a ten year old and a fourteen year old they understand the disease and help me out as much as possible. I still get scared. Wishing things were different. I really don't have anyone to share my feelings with so I am glad I found this site tonight.View Thread
I was just told that I have 2 positive lupus factors, however still borderline... muscle and joint pain is bad, all other blood work is fine..no RA or Sorjoran. Prescribed Plaquenil to combat possible advancement of Lupus. Very concerned as you are about eye problems. Told to go see my optometrist and get a baseline and then checked every 6 months. Prescribing Dr. said macular degeneration possible snd other eye problems, need to watch because not repairable or reversable, did not make me feel confident. Some reading says very rare for eye problems, but more I read not making me feel real good. I want to look for sn alternative, other than steroids. I will continue to research and follow discussion. Wishing you the best of health.View Thread
While you wait for others in the community to share their personal experiences and advice, you might want to take a look at our drug center's information on Plaquenil . It does list loss of appetite as a side effect. This information on living with and managing lupus may have some information that can help you with the pain and fatigue you are experiencing, as well as this tool meant to help you cope with lupus from day to night. Please let us know how you are doing!View Thread
I get soars in my nose a couple times a month and never really knew this was the reason. I also get really...
Posted by An_259530
I get soars in my nose a couple times a month and never really knew this was the reason. I also get really painful soars in my mouth, they make eating nearly impossible. The only thing I have found to be helpful with the mouth soars is straight baking soda after brushing and using mouth wash, to insure it is serialized before you coterize it shut. I have to do this 3-4 times a day or it is back the next morningView Thread
OH YES! Same terrible, maddening thing here. My precious 1020-count sheets were bloody from clawing my skin while sleeping and my used-to-be pretty legs were covered with crops of scabs in various stages of moist-to-scaly evolution. Ewww, gross, right?
Exactly. Except worse. In fact, I looked like the poster lass for Abject Homeless Hobo of the Year and expected at any moment to be caterwaul-hauled away for deportation. But I don't know where to, even Thug Leper Colonies have standards.
But then my Rheumatologist suggested CeraVe Moisturizing Cream.
Lo! and Behold! [choir of angels warble rapturously from on high> A miracle occurred!
I was immediately released from Itch Hell, ferried by that party animal Charon, and home free in approximately 1-2 days. Return trips to that miserable inferno have been prevented with daily use.
Important Tip: Use CeraVe Moisturizing Cream IN THE TUB, not pump bottle.
Good luck, sweet TGirl, even though I'm two years late here, it's never too late to reach out.View Thread
I have not been able to tell the difference between FM/lupus symptoms. Sometimes it is neither it's arthritis or ?. I'm not good at knowing what is what. If you figure out how to let me know. I also have trouble with memory and it could be either FM/lupus or depression. Of course with depression I have a few good days. I just keep going forward doing what I can to reduce the pain and craziness that comes with illnesses.View Thread
I'm in Oklahoma. I know what you mean about feeling 90. I feel soooo much older than I am. When I hear someone say "40 is the new 30" I secretly want to throat punch them out of jealousy. That's bad. I know. But, I'm too young to feel this old and I'm mad about it! How long have you had symptoms? Are you getting treatment and is it helping?View Thread
I have lupus kidney disease and it is currently at a very severe stats. I urinate very often and feeling fatigue most of the time. The skin on my face has gotten darker over the past years as i was on different kind of treatments. I was wonder if there are anything that can be done so it would look normal again?
You could always get a second opinion. I don't know what the standard for diagnosis is, but from what I've read a positive test or a negative test alone doesn't indicate much. The symptoms are part of the bigger picture. My ANA is positive, but not by much. So I am also waiting for more tests, further review of symptoms to say, yes it is. I'm wondering if in the meantime they are at least treating your symptoms. They may not be completely certain what the cause is but in the meantime maybe they can treat and ease pain or discomfort.
I am feeling exactly the same as what you have experienced. I was diagnosed to have vertigo a month ago and have been taking Meclizine 25MG tablets for 3 weeks now. I still feel dizzy when I sit up or move from side to side in bed. I had head CT scan a week ago but did not hear the result from my doctor yet. Three days ago a Registered Nurse told me that there is no medicine/treatment for Vertigo - they say this goes with age. I am 80 years old now. I hope they could cure me soon.View Thread
I understand how you feel put into an awkward position. Your best bet is to say "Hey, let's get tested for...
Posted by An_259276
I understand how you feel put into an awkward position. Your best bet is to say "Hey, let's get tested for STDs" as a sort of protocol that you always do before you become too sexually intimate with anyone and not just her.
I am female, and I have lupus. I have had no vaginal warts, but every single case of lupus is unique and different. If they are from lupus but not contagious, then great. If they are from lupus but still contagious, then you need to suggest to your girl that she talks to her doctor about what to do because she is now sexually active. While it is ultimately her responsibility to provide you with answers and protection from anything contagious, she might not know what to do yet. Encourage her to visit her doctor about this and both of you should get tested anyway as a part of a healthy and new sexual relationship. I hope this helps.View Thread
Is it possible that this is the natural wave of your hair? When posting, you can click on the camera icon along the top bar of the post and attach a photo. You will have to upload it to a photo-sharing website first, and then use the link to the photo in order to share.View Thread
Is anyone familiar with cryoglobulinemic vasculitis? I was diagnosed with Lupus several years ago and have kidney issues. I've been experiencing weakness and when I put this symptom in with SLE I got this disease response on a search on the internet.
Yes I know I shouldn't put stock in self-diagnosis but I was miserable for years until I was diagnosed with SLE and I did a lot of the legwork myself. I like being able to point my doctor in the right direction if possible.
Has anyone had this diagnosis or does anyone know about this disease?
If you have a diagnosis of SLE you might be eligible for disability. Unfortunately, disability is a numbers game. If you are currently working you can apply for disability with the state and receive up to one year. For permanent disability you need to apply to the Federal Government, you can collect both for the one year period.
If you have not worked for the past ten years you can only receive disability if you have a very low income and usually very few assets.
I live in California so these rules are applicable to the US and California.
My Ana tests are as follows:
Ana cascade - negative
Ana titer Ifa -1:80
Ana screen Ifa - positive
Ana pattern - homogeneous.
What do you think, Lupus? I have been fighting joint pain and surgeries in feet, neck and hips. I have a quarter size rash on chest that itches, come and goes and is a circle, tho not ring worm according to dermatologist. (She did not know about SLE symptoms.) definitely worse itching after sun. I'm a female and age 60. Shortness of breath only when lying on my back. I'm active but have chronic pain.
I'm waiting for family doc's call but will see a rheumatologist, just curious to others thoughts.
Thanks in advance.View Thread
I was diagnosed in the 1990's with lupus and other AI markers. I have been on low dose antibiotics since then and am doing OK. visit rheumatic.org and see the histories and also vist the roadback foundation. A really good book to read about low dose antibiotc therapy is the New Arthritis Breatkthrough by Henry Scammell.View Thread
As you are finding out, getting a formal diagnosis can take a while when it comes to autoimmune diseases....
Posted by Anon_2712
As you are finding out, getting a formal diagnosis can take a while when it comes to autoimmune diseases. Since the treatment is essentially the same for many of them, it doesn't really matter a great deal if the doctor takes a "wait and see" approach to diagnostics, as long as you are getting the appropriate treatment (which is usually Plaquenil.) When and if your symptoms and lab work get worse, the diagnosis may change, but more than one negative ANA makes lupus unlikely, and other related problem (e.g. RA, Sjogren's, one of the vasculidities, etc.) more likely. Talk with your Ob-gyn MD about your concerns about pregnancy, and you'll probably find that your overall health status and whether you have antibodies that can cause coagulation problems (more common in lupus, but can co-exist with other illnesses) than your specific diagnosis.View Thread
I was just diagnosed with Anti-Cardiolipin and feeling scared. The doctors said my levels were really high does anyone have this or know what these results mean? [br>Cardiolipin IgM 98 [br>[br>Cardiolipin IgA 67 [br>[br>Cardiolipin IgG 33 [br>[br>I was having really bad legs and chest pains with some swelling. They put me a warfarin , is anyone else on this also?View Thread
I was diagnosed with SLE and fibromyalgia about 2 1/2 years ago although I had symptoms for several years before finally getting a diagnosis. I've been told I was crazy, it was all in my mind, I was lazy, I was a hypochondriac, even had a rheumatologist tell me I need to see a "shrink" cause I was imagining it and the doctor that referred me needed to go back to med school, you name it I heard it.
To all those out there who are newly diagnosed or trying to get a doctor to pay attention to all your symptoms so you can get a diagnosis the best advice I got was to keep trying you are your own best advocate.
The doctors not only have me on plaquanil for the lupus but also on Cymbalta for pain, Abilify for depression, and methylphenidate for the fog. I also take a multi-vitamin each day. It took a bit to find the right combination for me as it does with everyone but this works great for me.
I guess what I'm trying to say is there are other medications besides the normal ones for lupus that help with the other symptoms even though I had to go to a "shrink" to get the help it is well worth it.
Don't get me wrong I still have bad days but I have more good than bad for now. My life is almost normal. Hopefully, this will help someone else out there.View Thread
Lyrica is a medication for epilepsy and changes the chemistry in your brain to reduce pain. One of the main side effects of this drug is changes in mood. If you're having thoughts of suicide or have a dramatic change in mood you should see your doctor right away.
My doctor suggested this drug and other like it in the past but I've vetoed them as I'm afraid of the possible mood altering side effects. Most of these drugs are worse when you first begin but sometimes you never get used to the effects. Taking them for only three weeks seems odd as most doctors prescribe these medications for long term pain control.
I've known people who have done well on Lyrica and others who have stopped due to the mood changes. Actually more people have stopped then continued in my group. Another prescription to consider is Gabapentin, it also helps to reduce nerve pain. My husband takes this drug for the nerve pain leftover from his cancer treatment. It is non-narcotic and he does well. Beware, he did have some mood problems at first but that may have been because he was going through cancer treatment at the same time and was in a lot of pain. He has adjusted well after 18 months on the drug.
Have a talk with your doctor and they may have some advice or can help you.
Life with SLE is interesting, there are days when you might feel okay and then days when you're not okay. Even after years of medication I still am not back to where I was before the SLE flares. I guess you can say I now live a "new" normal.
You have to ask for more help from those around you and let them know that this is your limitations. While it maybe hard at first especially if you were always the one to do thing, they will either get used to it or show their true colors. I have to honestly say my kids really stepped up to the plate and took over a lot of duties and even now as young adults who have moved out they come over regularly to help with the heavy stuff.
My husband was the main breadwinner but when he came down with multiple myeloma cancer and went through a bone marrow transplant we had to rely on disability. This is something you might want to consider. I was lucky in that my job allows me to work from home (computer work) so I've been able to continue working but on my schedule. If I need to sleep late it's okay as long as I get everything done in a 24 hour period.
You will have to change how you live as things that were easy maybe hard now. You will have to ask for help and insist that others pitch in and do their fair share. It's hard at first but eventually they realize that you are all in this together.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.
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