Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi. My name is Cara. I was recently diagnosed with lupus, after a couple years of going back and forth with doctors. I was starting to think that it was all in my head like they were telling me, and now that I know what it is, I kinda wish it was all in my head. After doing some research on lupus, I am now more scared and upset than I was before. I feel like crap ALL the time, and I fear it being like this for the rest of my life (however long or short that may be). My rhuemy started me on plaquenil and neurontin, but I hear that plaquenil takes a long time to feel the effects. The neurontin doesn't seem to help with the pain at all, but I just started that a couple days ago. Does anyone know if that takes a while to help as well? Also, my pain is not so much in my joints, but more in the long bones of my arms and legs. I also have a vitamin D deficiency and recently had surgery for hyperparathyroidism. I am told that the bone pain I am having could be from those, but even on 50,000 IU of Vit D a week, plus calcium and D supplements daily, I am in pain. I am really depressed about all this, and to be honest, quite scared. I was never afraid of death, but rather the manner in which it came, and if I was going to suffer. At the moment it seems that I am going to suffer the rest of my life, and I read that lupus can shorten my lifespan. I am really lost right now. Sorry about the long post, I just needed to get it all out there. Can someone help me?
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A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
Honey....Take a deep breath. What you are feeling is normal. Once the meds kick in you will start to feel better emotionally. If you dont, then you may want to consider trying an anti-depressant/anxiety med as lupus can affect your brain chemicals. Please dont be so scared. Lupus rarely kills people unless they have severe organ involvement. I have lupus and APS which is a blood clotting disease causing strokes, clots and heart attacks. There is not a day that goes by that I dont worry about dying from APS. So, I get it...Believe me, alot of us do. You are very lucky that you finally got diagnosed. Try not to read all the terrible things about Lupus as it affects everyone differently. Reading everything about it can sometimes cause you more harm than good. The most important thing is that you have started on meds. Yes, the plaquenil can take up to 3 months to finally kick in. You should start to notice a small difference in your symptoms within a month. You just have to be patient which I know is hard when you feel so horrible. Once your body starts to feel better from the meds, you will probably only have flare ups and feel sick once in a while. You will learn what triggers your flare ups and try to avoid doing them (to stay feeling well). Its not a death sentance though. You may want to ask your doctor about putting you on a low dose of prednisone until the plaquenil kicks in. Prednisone starts the anti-inflamation process quicker. Also, neurontin never worked for me. If you arent feeling any better, pain wise, see if your dr. will prescribe you Ultracett/Tramadol which is a non-narcotic pain killer that acts as a narcotic. It has helped me many times for my pain. Just know that we all understand what you are going through and are here to help you. Rest and dont over-do it while your body starts to heal. Once you start feeling better life wont seem so terrible.
Hugs
Melissa
Despite having this disease, I had a career, then got married, had children, and live a pretty normal life. Sure, there are going to be some bad times, mostly the in-between times when your doc is figuring out which meds to use. I'm puzzled that your rheumy would use Neurontin. That is mostly used for nerve pain. It's not particularly helpful for any other kind of pain. BTW, the pain you describe in your legs is common. Ask your doc for an NSAID, usually they start with Naprosyn which you can get over the counter. Naprosyn WILL help the bone pain, at least partly.
As for Plaquenil, it takes 2-3 months usually to kick in, some times as long as 6 months and it does NOT work for everyone. The one thing you'll find that all lupus patients have in common is that NOTHING works for everyone. It's a trial and failure process to get a good combination of meds. I can tell you that right now, I am mostly pain free.
The biggest thing is to know that you are not alone. It is helpful to join a support group because you will find others who understand what it's like to be in your position. I suggest that you buy Dr. Wallace's "The Lupus Book" to explain everything that you need to know. It's written for the general public and probably available from Amazon.
Also be aware that some lupus patients can be very sick and have certain symptoms but that does NOT MEAN THAT THIS WILL HAPPEN TO YOU. You may never get anything worse than this bone pain. There's no way to tell. But please don't scare yourself by reading about what CAN happen. Your case is the only one that is important to you. I assume that you have no internal organ involvement since you didn't mention it? That's the biggest cause of death for lupus patients---problems with the kidney, liver, lungs, etc.
Mostly you need to learn to live WITH your disease and not fight it. Learn how to change your life so that you are able to pace yourself. Some things you can't do---like sit out in the son---but for the most part, you can do lots of things, just pace yourself, rest, and don't plan too many things together. It's important that you stay yourself adn not become "the disease" or "that girl with lupus." It's like having any other disease; no where does it say that your going to die from this or suffer for ever. The object with your doc's help is to get you to a comfortable place so you can live your life.
Tracy
PS: Most SLE patients have NORMAL lifespans these days.
I understand the feelings ur having. I was 15 when I was diagnosed and was just starting to get the new emotions of being a teenager. So i had like super depression. I agree, find some anti-depressants, or try some other coping situations. Some things I found that helped me out were meditation or yoga. And most of all keep your head up! You meet a lot of cool people on here, and they'll help u a lot!
Hugs
Cassie
I'm so sorry for your diagnosis. It does take time for the medicines to kick in but you will find some relief. Things will get better for you but you must stick with the medicines. The plaquenil is a wonderful drug and over time you will come to realize that it is helping. It took several months for mine to kick in. But now I wouldn't miss a dose for anything. I'm praying that you will find peace in your diagnosis and know that God is in control. Lupus is not the death sentence that it was many years ago. You can live a long and good life with this disease. You just need to learn how to do that and how to take care of yourself. I'm sending hugs your way. Glad you came to this wonderful website. It's so full of people who really care.
Welcome to the group.
I still wish it was all in my head too. It is scary. Get on the Lupus Foundation of America website, they have so much information. Also your DS friends have been through it all. Once the meds kick in and you learn what works with your body to reduce the pain you'll feel much less frightened. Also, knowledge is power. Just make sure and get the most updated information you can.
Warmth and love to you,
Teisha