View Full Version : Help!!
new to lupus
04-04-2009, 09:03 AM
I am new to this whole "Lupus" thing. I was some what diagnosed with Lupus a month ago. I have so many questions. I live in a remote area, so it is difficult to see a specialist on a ongoing basis. I am eager to start communicating with you's. Talk with you's all soon.
04-04-2009, 10:45 AM
Hello and Welcome newtolupus.... :wavey:
Glad you joined us...sorry you've just gotten a Lupus diagnosis. This is a great place to find understanding and support and to get your questions answered. There are people of all ages on this site, both women and men, and we're scattered around the globe. We've got several fantastic members in Canada...I know everyone will be along to welcome you soon.
A good place to start on this site is the 'Sticky' Posts that are at the very top of each different forum....they provide some great general information about Lupus and some things you need to know to better take care of yourself and fight this illness. They've been placed there so members don't have to search all through the site to learn to basics.
Are you without a Rheumatologist because you haven't found one yet or because of the lack of them in your area? Do you have a General Practitioner that can help you find one and give a referral?
Again, I'm happy you've found us and looking forward to hearing more from you soon.
new to lupus
04-04-2009, 11:02 AM
Thank you for taking the time to welcome me. I had the opportunity to visit with a Rheumy last September, and based on my medical history he sent me for blood work. (My ANA was positive 1:640 what ever that means.) I just recently found out that they suspect its Lupus. It took 7 months for my doctor to give me my blood results. I only have a G.P. to depend on at this time. I have sooooo much pain and my rashes are out of this world. Not too sure what to do? I can see my G.P. every 6-8 weeks because of the lack of doctors it is difficult to get in to see him. In the mean time I take alot of hot baths to try to reduce the pain in my joints, but my rash then gets worse. It seems that there is no happy medium here. I am currently taking it one day at a time. Thanks for listening to me.
04-04-2009, 03:46 PM
I am sorry to hear you have the Lupus diagnosis. The good news is this forum is a family and we bounce questions around all the time. The rate you mentioned is an ANA Titer which is used to diagnose Lupus. Did your doc also run a anti-dna by Farr? If not, I would ask as this tells you how your inflammation is over a 6 week period. The sed rate gives an inflammation rating the day the blood was drawn.
As far as the joint pain, Plaquenil usually helps and also offers sunscreen protection although it takes a while to build up in your system. I take Plaquenil 200mg and get kenalog shots every three months. I take hte shots over the prednisone pills because shots are not absorbed by the organs which is very important. You can have cortison/kenalog shots 3-4 times per year and it really helps.
Rashes . . . . hydrocortisone cream will help. You can purchase this at any store/pharmacy or Dollar Tree if you have anything similar to it there. The other option is to ask your doctor to RX you Triamcinolone cream 0.1%.
Many of us have a huge sensitivity to sunlight and flourescent lights. I removed all my CFL bulbs in my house. Check out coolibar clothing which has a uv protectant in it. They usually have a sale in July/August for half price. I love their blouses and wear tank tops under them in the Summer. You can sometimes find coolibar on ebay at a discount. I wear 50 spf sunscreen and never walk outside without a hat on. This helps reduce the inflammation and pain as well.
If you have any other questions, fire away. I would check into a rheumy. I drive 2.5 hours to Los Angeles every three months for check-ups.
new to lupus
04-04-2009, 05:52 PM
Thanks for your warm welcome and taking the time to respond to my message. I am so new to this, I am very afraid. I live in a remote area, so it is very difficult to get a referral to see a specialist. I am so full of questions, I hope you all have patience with me:) When people speak of a "flare" is that when some of your joints become very sore? I am not too sure what is happening with me, but there are times where I am unable to move my wrists, hands and shoulders, I feel so incapacitated, this can last for weeks on end, mindly the severity of the pain does vary on the time of day. Does this make any sense to anybody? If feel that I am the only one here on this planet that is going through this. How about weight loss? I have dropped approximately 20 lbs in a few weeks time. Is this a part of Lupus? or is it because I just found out what I have and I am terribly stressed out? Once again Faith thank you for your kind words.
04-05-2009, 05:24 AM
welcome cindy.. i'm fairly new, too.. just diagnosed a month ago.. but i've gotten so much information, support, and hope from this site already.. even though it is somewhat disheartening to be here in the first place, i think you will find this site extremely helpful.. welcome and good luck to you.
My name is Rob, and I was diagnosed with Lupus five years ago. You're definitely not the only person on the planet with these aggravating, and hard to understand symptoms. When we speak of a "flare" what we mean is we suddenly have an outbreak of painful symptoms such as the joint pain and rashes you are having. My symptoms, like yours, can change in a very short timespan. I feel like death for a few hours, and then the pain subsides, only to come back again whenever it wants. No two people have the same symptoms, but the joint pain and rash are probably the two most common symptoms.
I know you are scared, and that you feel isolated and alone. I want you to know that you don't have to be scared, and you are certainly not alone. Lupus is no picnic, but it's not an end by any means. Many of us, myself included, live and cope with the disease, and we thrive despite it. Some of our members have lived with Lupus for 20, even 30 years.
There are a few things that you can do immediately to help keep your symptoms from coming on, or getting worse. The first would be to stay out of the sun, even indoors. Sun exposure can very quickly aggravate your symptoms and put you into a bad flare. I wear spf50 sunblock, I always have a hat, and a light long sleeved shirt is never far away so I can cover up my arms. There is another almost universal way to bring on a flare, and that's stress. Stress can be very difficult to avoid, but you have to do what you can to reduce as much stress as possible. Of course, Lupus itself is stressful, and it seems to perpetuate itself. You get stressed, you have a flare, the stress of the flare prolongs the flare, it can be a vicious cycle.
I would also ask your Dr./rhemotologist about medications. Most people with Lupus take the drug Plaquenil, and it really works well for most people. It can reduce your symptoms to a more manageable level, and sometimes alleviate your symptoms almost completely. Also, many of us take drugs like naproxen, which is the active ingredient in Aleve. It is what's known as an NSAID, or non-steroidal anti-inflammatory drug. It can really help with joint pain. I take Aleve when needed, but you have to be somewhat careful because it can cause stomach problems. Like you, I can't take a hot bath to loosen up, as it aggravates my rash. And, I also get overheated easily. Water above 80 degrees feels scalding hot to me.
Anyway, you are doing the right thing by reaching out, asking questions, and learning about your disease. I find knowledge gives a sense of being in better control of what's happening to me, and that in turn makes alot of fear go away. Don't be afraid to ask any, and all questions you may have, that's why we're here. So, welcome to our group, and please make yourself at home!
new to lupus
04-05-2009, 06:13 AM
Thank you for your warm welcome, supportive words and answering my questions. It was so nice to hear that I am not alone, thankyou for that. I am currently on Naproxen 500 mg twice a day, but it seems that it is not helping with my joint pain. I get joint pain almost on a daily basis, and sometimes it gets to the point where I am unable to do nothing. I guess I need to figure out a healthy therapeutic way to attempt to minimize my stress levels. I do work in a stressful job, and I also try to balance my lifestyle, but like most people it is not an easy thing to do. You mentioned Rob about staying out of the sun, well I have not had any sun exposure in about 5 months, except for the sun shining through my window at home or the sun shining through my vehicle while traveling to work. It has been winter here for 5 months now, so needless to say we have so much snow it's crazy!!! I dislike winters. I read that the sun is not good for people with Lupus, I guess because I was just recently diagnosed I never realized that the sun had such a direct impact on us. I am always outside in the summer time, either in my garden or by my pool. Does the sun make your flares worse? Rashes? I just started a rash on my forearms, feet and ankles this past winter, and it is still there, I can't seem to get rid of it. My G.P. said it is the type of Lupus I have, that my tiny veins break and blood rises to the surface of the skin. Wow , do I have alot to learn eh! Well thank you again Rob for taking the time to listen to me.
new to lupus
04-05-2009, 06:19 AM
Thanks for replying to me. This site is so supportive. You mentioned you were also recently diagnosed with Lupus, good luck I hope it goes well for you. I hope to chat more about this disease with you. Take care,
04-05-2009, 09:04 AM
first, i want to welcome you to the group....you can already tell how much compassion and support is here among this incredible family.
photosentivity includes fluorscent lighting....do you work under this lighting, or do you have any in your home....you must also protect yourself from this type of lighting.
also, i have read that we should protect ourselves more when in an area of sun reflectors such as sand and snow. you might want to try protecting yourself from these, and just see if your symptoms improve. i live in the south (usa) and have learned to carry my hat, wear covering clothing, and wear sunglasses at all times when outdoors. i still can't stay out in the sun very long, but at least it doesn't send me into a flare.
glad you found us....we are always here.
04-05-2009, 09:24 AM
Yes, exposure to the sun can cause us to flare up. Lupus is a disease that is fraught with relapse/remission. That means, there are periods of time when our symptoms are manageable and/or disappear. Then, there are times when our symptoms are raging and new ones even appear. Our main focus is to avoid those things that can cause our symptoms to get worse or to cause new ones to appear. One of those things is sun exposure and we must avoid it at all costs. That does not mean that we must become moles, we just have to take precautions before exposing ourselves to the sun (using sunscreen with a minimum SPF of 35, wearing lightweight protective clothing that covers our bodies, wearing sunglasses with UV protection, wearing hats, and limiting the amount of time that we are in the sun). Be aware that fluorescent lights can cause the same adverse effects as the sun, so often our workplace is at the root of some of our flare-ups. How we react to sun exposure is just as individual as is the disease within each of us. But, yes, sun exposure can cause skin rashes or can cause rashes to worsen.
Many Lupus patients suffer from a condition called vasculitis, in fact all of the rheumatic diseases involve some level of underlying vasculitis. That includes lupus, rheumatoid arthritis, scleroderma, and dermatomyositis.
Vasculitis is blood vessel inflammation that causes fever, pain, local tenderness, and other evidence of blocked blood vessels. When a blood vessel becomes inflamed and narrowed, blood supply to that area can become partially or completely blocked. Complete blockage is called occlusion; it causes the vessel wall to swell and makes things stick to the wall -- so a clot forms. When vasculitis interferes with circulation in any part of the body, it causes local tenderness and pain. If the blood vessels are close to the skin, characteristic rashes occur. Depending on where the blockage occurs, almost any organ in the body can be affected. (Note: Vasculopathy can also block blood vessels, but it does not cause the fever, pain, and local tenderness associated with vasculitis.)
Several things can happen to an inflamed blood vessel:
* If it is a small vessel, it may break and produce tiny areas of bleeding in the tissue. These areas will appear as small red or purple dots on the skin.
* If a larger vessel is inflamed, it may swell and produce a nodule which may be felt if the blood vessel is close to the skin surface.
* The inside of the vessel tube may become narrowed so that blood flow is reduced.
* The inside of the vessel tube may become totally closed, usually by a blood clot which forms at the site of inflammation.
* If blood flow is reduced or stopped, the tissues which receive blood from that vessel begin to die. For example, a person with vasculitis of a medium-sized artery in the hand may develop a cold finger which hurts whenever it is used. Rarely, this can progress to gangrene.
I hope that this information has been helpful to you :cute:
Welcome to our family!
Peace and Blessings
new to lupus
04-05-2009, 09:26 AM
I have to agree with you, there is tremendous support here, I am so glad I found this site. In response to your last post, yes, I work under florescent lighting all day long. I didn't realize that even lighting can cause some discomfort for people with Lupus. Thank you for explaining some important details with me, it is greatly appreciated. I guess it is kinda hard for me living in the north and having all this snow surrounding me, but I will be more mindful now. I have learned so much in the past few days by communicating with you great supportive people. Thanks again,
new to lupus
04-06-2009, 03:05 PM
I have a question and I was told to put it in the suggestion box...but I can't seem to find it..can ya tell I'm new. Can you help me..
04-06-2009, 04:00 PM
Hello Cindy I am fairly new to this site but have gotten a lot of answers to things and have found that there are people like me out there. My lupus and myositis does have good days and bad days and that is where a good doctor really helps. Hope you find all the answeres you need. Love Bonita
04-06-2009, 04:10 PM
So sorry you have to have this disease Cindy:no: I want to WELCOME YOU and i want to tell you that you found a WONDERFUL place to be surrounded by people who care. As you have already discovered:yes: Please feel free to ask any of us anything that is on your mind because we're here to help you:wavey::1zhelp:
04-06-2009, 06:05 PM
hi new to lupus,
oh honey, i am so the wrong person to ask about anything that has to do with the computer or the directions for the forum. i am not familiar with a suggestion box here.
if you want to, send me a pm and i will try to direct you.
04-08-2009, 10:33 AM
Nuh Uh Phyllis! YOU helped me with my fun icons! GO PHYLLIS!!!!!:thumbs-up:
04-08-2009, 02:21 PM
Jeannette, i knew i could count on you to boost my ego. all i did was pass on information that was given to me, i think it was oluwa who got me there, so maybe she is our computer expert.