Seeking Advice on Possible Lupus Diagnosis :(

V.,

Here is the link to the Lupus Foundation of Greater Washington:

http://www.lupus.org/webmodules/webarticlesnet/templates/...

N.

I have Lupus and I was diagnosed when I was 16 years old. I am now 27 years old. I do not feel like this is a death sentence. I had very few symptoms when I was first diagnosed but my grandmother had it which led to my doctors ultimately testing me for it. It wasn't until a year after I had my son that my symptoms worsened. I had severe joint pain/swelling and extreme fatigue. I now see a rheumatologist on a regular basis. I take a whole regimen of medicine (steriods, a chemotherapy drug, antimalarial drugs, etc) but my Lupus is under control. I luckily do not have the organ involvement right now like a lot of people with Lupus suffer from but it could happen in the future but I can't worry about that. I have my good and bad days but I have learned to deal with them.

I am not posting to criticize you in any way so please do not think that I am. I think you need to try to stay positive. With any illness, positivity and the belief that you can fight whatever the diagnosis is key! Reading things online or in books can be VERY scary as they show and report the worst.

I hope you are able to to get insurance soon so that you are able to undergo testing to find out for sure what is going on with you and get the care you need. In the meantime, please try to stay positive and lead a healthy lifestyle as best you can. If you indeed have Lupus just remember that it is manageable! :)

Good luck to you and take care!

I'm sorry you haven't been feeling the love here. I don't know how much help I can be as I don't have Lupus, but I can tell you that you can rule out fibromyalgia and probably the rheumatoid arthritis as well. I'm on disability for fibromyalgia and I have a really bad family history of rheumatoid arthritis, so I'm quite familiar with both.

Fibro would not include joint pain. It's more like an arthritis of the muscles, so any pain would be muscular, not in the joints. You can rule that one out.

One of the main indicators of rheumatoid arthritis is swelling and possibly a burning sensation at the site of the swelling. Since you didn't mention any swelling in the joints, I'm inclined to believe it's not RA either.

Also, you didn't mention in which joints you're experiencing the pain, but RA typically strikes the smaller joints first, like in the fingers and toes. It's not generally widespread joint pain until the disease progresses, and by then you KNOW without a doubt.

Beyond all that, I understand glucosamine is supposed be helpful with joint pain. That's something you can discuss with your pharmacist without paying a cent. And if you have access to a HEATED pool, doing some stretching and swimming in the water really helps to loosen things up and relieve pain. It's really great for added mobility. And yoga is fantastic too. You just want to be sure to modify the postures so you're not pushing yourself more than your body can handle. The rule of thumb is, if it hurts, stop. Oh, and ibuprofen is better than acetaminophen for pain and inflammation. You can safely take 800 mg every 4-6 hours or so, providing it doesn't upset your stomach.

I have to agree that a doctor really is in order here. Even if you don't qualify for Medicaid, you can still go to the county health department. I don't know if you have already looked into that, but they work with you based on income. I don't know if they can accommodate you on what you can afford, but it's definitely worth checking out. When I had no job and no insurance, I paid about $2 for an office visit and about $1 for prescriptions. Of course that was based on NO income, which doesn't apply to you, but you never know what they can work out for you. Unless you've already looked into that, then you would know.

At the very least, I hope you manage to get a proper diagnosis soon. Not knowing is usually the hardest part. Once you know, you are much better able to choose how you approach treatment, if you choose treatment at all.

Dealing with chronic pain, especially when you're not sure of the cause, is really taxing, on you and everyone in your life. Believe me, it took me 7 years to get my diagnosis.

I wish you and your family the best and I truly hope you find some relief.

V.:
I recently went through testing because I thought I had Lupus. I learned a lot through the process. There are different types of Lupus and some are more severe than others. Some are debilitating and some are less so. If you do have it there are some meds the dr. may want to put you on right away to lessen the chances that the disease gets worse. Also, I heard on the radio last week about a new breakthrough drug coming out soon for Lupus, which would be the first one in a very long time.
First, you need to get insurance. Can you qualify for Medicaid? You need to talk to some state agencies to find out where you can go.
Second, it is impossible for you to diagnosis yourself, even if you think you have a lot of the symptoms. As someone else said, other afflictions, like fibromyalgia, have symptoms that are VERY similar to Lupus. To diagnosis Lupus you need very specific blood tests. My experience was my primary care dr did some testing and those results pointed toward Lupus. She thought I had Lupus or a "Lupus variant." She sent me to a Rheumatologist, who was not convinced from the prelim testing, so she did much more specific testing. This labwork is expensive but necessary. Turns out the results of my more specific bloodwork did not fit the Lupus profile at all and I don't have it. So you don't know. Get off Web MD or other health sites as they will make you crazy!
The first step for you is to figure out where you can see a general practitioner so that you can have some basic bloodwork done. Once those results come in, it will help the dr better know what is going on and if further testing is required. There are so, so many things that could be going on, such as thyroid issues and hormonal issues.
If you cannot figure out where you might get medical attention then call your congressman and ask his/her staff to help you navigate state agencies.
Good luck!

I personally don't have lupus, but I do have a wonderfully close friend who does have a severe case of lupus. She's 22 and in 7 days from today she will be having her first child. I can tell you that while she worked with me there would be days that she couldn't even come to work because of the severe amount of pain, there were also days that she would come into work and not be able to do anything because she hurt so much. I don't know anything about her medication except one was a steriod that seemed to help alot. The only other things that I know is you really need to be careful of the sun, but warmer climates tend to help, she lives in Arizona now (way too much sun, but plenty of warm) and she loves it, it feels so good to her, she's only had a couple of flair ups out there. I know drinking any alcohol isn't really a good idea because it can make the pain worse, and there is an issue of smoking, another lady that I know that has lupus smokes alot and it does more damage than if she just had lupus alone.

It is scary, it is difficult, but it is something that if diagnosed by a doctor and the select lupus that you may have it can be managed and it can be dealt with for a really long time. But you would have to see a doctor ASAP. That is something that shouldn't wait and it is certainly not something that you just wait and see on. Best of luck, I'm hoping its not lupus but just be prepared for the worst and hope for the best, there is always hope, you may not even have lupus but don't worry too much about it until you are actually clinically diagnosed. Because if you don't have it you are going to get yourself worked up with this possibility when it could be nothing (as hard as that is to believe with any circumstance), chin up, hope for the best.

Hello,
I have SLE- Lupus. I have suffered my whole life and never really had any relief from the 14 dangerous & toxic pills I had to take several times daily.The number of Dr's thatI had to see on an ongoing basis made it difficult to carry on any routine. This was so dibilitating that I could not function as a normal person. Between the arthiritus, migraines, allergies, asthma, skin lessions,kidney failure,miscarriages,fibroids,cysts,cancer & chemo, I almost did not want to wake up anymore.I was introduced to Xango - a juice I wa stold to try it, It might work for you.Well what did I have left to lose? I am so grateful for Xango in my life that I am compelled to share it with everyone who will listen and I became a distributor August 2007.Heartfelt thanks to Xango.
If anyone you know suffers from Lupus and the vast array of symptoms, please contact me.
God Bless, Sheila

V.,

My name is M. and i'm a distributor with Xango, I have enclosed a testimonial from another distributor who was suffering with Lupus, and has had great results from the Xango Juice. You can visit my ____@____.com me know if i can be of further assistance. ____@____.com

--------------------------------------------------------------------------------

Hi V.,

I was diagnosed with fibromialgia last May, and my Lupus test was also very high. I was in such a bad shape, I could not cook more than twice a month. And after many functions of my body quit on me, I was gaining weight fast, even though I was eating healthy food and with moderation. I was told this was an automatic self-preserving reaction from my body to protect my heart's functions going.

Furtunately, the doctor who disgnosed me with fibromialgia was open minded to natural treatments, and he told me the Xango Mangosteen Juice was very good. I started using it, and in 10 days I lost 10 pounds. Most likely the water retained in my tissue and my bloting went first. Then I continued losing weight and recovering my functions. In five months I lost 35 pounds, with no exercise or any other effort in such direction. And I recovered enough to start dealing with my daily life and family responsibilities.

I would urge you to take this juice, you will notice huge improvements in your overall health, and your body will start healing - one thing at a time. The juice does not heal you, but feeds your body with the necessary nutrients, and your body does the healing. Do not replace medical treatment with this juice, just take it on top of all medication and keep in touch with your doctor, who will gradually reduce your medication as your body takes charge and heals. You can find info here: www.myxango.com/mangosteenglobal. If you want to get the wholesale price you need to sign up as a distributor, or I can put the order in for you and it comes to your home. If you are still low on cash, I can help you start in the business and make the money you need. I got my juice free from the second month. If you want to call me, I am in Canada: phone ###-###-####, E-mail ____@____.com

V., I know you said you don't have insurance but you do need to see a good doctor and, if necessary, get referrals to specialists to get a real diagnosis. You may want to get some form of whatever basic insurance you can scrape together before you get diagnosed -- because if it is indeed lupus or something serious, and you get a diagnosis before getting insurance, you'll be branded as having a "pre-exisiting condition." If you try to get health insurance after diagnosis, you may not get coverage.

I have an acquaintance with it and she says it can have some of the same symptoms as other conditions including fibromyalgia (which also creates sometimes horrible joint pain) and others, so it can be hard to diagnose at first unless the doctor knows a lot about it. You're worrying yourself sicker by not knowing exactly what is wrong. Yes, it may be lupus but it may be something else entirely. You need to get a real diagnosis. There is a group for lupus sufferers, I believe it's the Lupus Foundation but could be an "association" instead -- please find them online for help and maybe names of local doctors!

Hi
I am sorry you haven't felt support.
I do not have Lupus, but shortly after my second daughter was born I had a terrible stomach virus and shortly after that I ended up with arthritis like joint pain. Ultimately I was diagnosed with the autoimmune disease of shogrens (sp?) which is allegedly similar in symptoms to lupus. something else for you to research.. but I strongly suggest that you go to a doctor.. as difficult and expensive as that is.. because it is the most important thing you can do for YOU and your kids to make sure you care of your health. I wish you the best of luck and hope that you can get help to be pain free soon!

Hey V.,
Wow does some of this sound strangely familiar...I too, went through almost identical signs and symptoms. However, my condition turned out to be thyroid related,(I'm hyperthroid at the moment) so that maybe another avenue of consideration for you. The good news for me is, my type of hyperthyroidism is easily treated and responds very well to medication. That being said, I understand and feel for you as I was in your 'stuck' situation for many years (work/insurance). I wish you all the best and hope you find some answers and relief soon!
S.

Try not to self-diagnose this. There are too many other conditions that can cause the same symptoms. Hair loss, fatigue and joint pain can also be a result of stress (you have three young children, new job, no health insurance, etc.), anemia (your baby is 10 months and you have not written about your cycles, other vitamin deficiency, lack of exercise and rest, etc. You haven't written your weight, your overall fitness program, previous conditions, etc. What makes you think it's lupus? I am no doctor, and friends and Web site participants cannot correctly assess health matters without seeing you and considering your entire health history. Yes, it is good to seek advice. Yes, acknowledge something is going on in your body. But, to get life insurance and study mortality rates for a disease you might not have is sure to cause depression. My rule of thumb, if a condition is affecting my mental and/or physical quality of life, regardless the cost, it's time to see a dr. I've paid out of pocket for a second opinion when one doctor was recommending surgery. I've avoided an unnecessary $2000 procedure (which my insurance would not have covered) by paying for a $150 dental visit. Yeah, it hurt the family budget, but so would have a $2000 bill we didn't need. It was worth $150 to discover I had an unethical dentist and I changed as a result. Even without insurance, it's better to schedule a visit of $65-$100 with a dr. than to plan a funeral, which just might happen if there is something serious that you are not addressing. You might have a condition that requires at $10 bottle of iron tablets. You won't know though until you find out. Fear can paralyze us and cause us to make bad choices. If lab work is required, there must be some clinics that offer free or low-cost processing. There used to be DC General. I'm sure if you called your county's or state's dept. of health or family services and explained your situation they could point to some resources you might not have known existed. Just remember, if you are the primary wage earner and your health is adversely affected, the entire family suffers. So, you owe it to yourself to make sure you are in the best of health, not only for their welfare but also so that you can really enjoy your family and your life. If you keep thinking about the cost, look at a picture of your three children and ask yourself, is the $150 or $200 now worth missing out on raising them? I'm sure the pain is hindering your being fully connected to the family. Call around and see if there are programs that might help, or resend your request to MamaSource and ask if there are drs or clinics in the area to help low-income families with medical problems.

I'm sorry you are going through this and i'm sorry you haven't received support from here. I do think you NEED to go to a doctor and get a confirmed diagnosis. It could be Lupus or it could be a combination of other things. I'm not sure where you live but most cities have a free clinic and/or reduced cost clinics for those who do work but do not have health insurance. Contact your local hospital they can refer you. Good luck!

First of all, get on medicare, the children are covered under s-CHIP, see a social worker ASAP. Second, you cannot self diagnose, it will only make you worse, even if you do not have LUpus.
I was diagnosed at 3 years old, I have the allergies, the arthritis/joint issues, the skin problems. I have been in and out of remissions my entire life. Right now, I am very well controlled, although stress- read teenager, tweener, 6 yo, business and house to run- brings out what we call my butterfly on my face.
Since 2005 I have used some great vitamins and supplements to help my body work better with itself. I have also educated myself on how important your diet can be with regards to how your body functions.
You are under ALOT of stress right now, even in non-sick people that will adversly affect your body. So take a deep breath, call DSS and get your family covered and whatever other help that thye can offer, TAKE IT! I spent several years on food stamps until I got things back in order.
If you need to talk, e-mail me and we can get togethre.

Many autoimmune diseases present for the first time in the post-partum period. The hormonal changes and activation of your immune system after 9 months of immune system compromise explain this in part. Prolactin, the hormone involved in lactation, is also a potent immune system enhancer. It's a cruel joke for many women who sacrifice so much to have a family.

Please do consider seeing a doctor soon. There are several free clinics in DC and a couple in VA that I know of. A Kaiser Permanente insurance plan could be purchased for less than $200/month too.

I was suspected of having lupus because of an itchy rash I developed after my first child. I had the malar rash on my face and was sensitive to sun too. Luckily the rash resolved when I stopped breastfeeding, but the autoantibodies remained. Now, two years after my second child, I have been diagnosed with a much milder autoimmune condition. But the autoantibodies are a sign that things could get worse down the road. To avoid disease progression, it's important to treat early. Otherwise you can end up on more potent, toxic medications. It's also important to eat healthy, avoid immune triggers like vaccines and immune enhancing supplements (echinacea, etc.), and try natural anti-inflammatories like Omega-3 fish oil supplements. Exercise and stress management are also important. Good luck.