Seeking Anyone Who Has or Knows Someone Diagnosed with Lupus Arthritis

Have you tried looking for information online. My sister-in-law uses WebMD for everything and loves it!!! You should be able to find out all about the symptoms on there. Good luck.

My heart goes out to you. I have had a few friends that have had Lupus, I myself have had severe Chronic Fatigue Syndrome which thank God, is now under control. Lupus is a wicked illness, but there is hope.

There is a doctor in Lake Stevens, Dr. Philip Ranheim who is an "Environmental Doctor" (Tel: ###-###-####). These type of doctors specialize in diseases that are caused by toxic environments. This one was referred to me by a friend whose son is autistic - which is - I'm convinced - caused by the body and brain being poisoned by the environment as well.
I recommend using an MD, but also checking out things with a Naturopath. Dr. Jodi Berg, in Everett, (she's in the phone book) is an amazing Naturopath whose specialty is auto-immune diseases. Also, Dr. Cheryl Woods of Trinity Family Health Center in Lynnwood (also in the phone book) is very good. With a good Naturopath, you can usually keep this disease from getting worse. My friend is actually better now, her Lupus is not as bad although she still suffers from a very weak immune system. You DO have to watch who you go to, becuase there are certain natural substances that can make Lupus worse. Arthritis is often also an auto-immune disease, so I wouldn't be surprised that they would go together. At one point I had the beginnings of Rheumatoid Arthritis, but with Dr. Jodi Berg's help, and also improving my diet (a lot less meat) it went away.

God bless you, I hope you find an answer for your daughter. Lupus is often caused by toxins in the environment. I knew two people in Arkansas that had it - and a lot of their water is contaminated.

Hi J.,

I am A. and am 41 years old. After a very stressful time in my life several years ago (6) I was diagnosed with Lupus. Today I am free of symptoms and am considered cured! It turns out you can be diagnosed with this when you are actually just experiencing symptoms - kind of like a warning from your body telling you to rethink your life or things will get worse.

I went and saw several doctors, a naturalpath, a acupuncturist, and a nutritionalist (she was no help at all). The Naturalpath recognized several things about me, I didn't break down food properly, my sleep was poor, I was deficient in many nutrients, I had big time sensitivities to many important foods, etc. so she went to work. My rheumuatologist was from East India and he told me in a non-doctor/patient way to become a vegitarian and seek organic foods only. No sugar, corn starch, carbination (including beer :)- this deprives your muscles of needed oxygen, no unsaturated anything :( and no dairy.

So basically I was left with organic foods only - shopping at places like Trader Joes and the local Co-Ops. I have learned to love Soy milk but I hate Tofu. I had to get my protien from peanutbutter, nuts, pumpkin seeds, a grain at Haggen's in the natural foods department (can't remember what it is called) and soy products - Morning Star is really good.

I also had to learn how to meditate and handle stress much differently - NO emotional stress! In otherwords, I had to tell my mother-in law to back off :)I also had to learn to say no, smell the roses sort of thing, and sleep more, laugh more, and exercise twice to three times a day eating small portions during the day.

My life has changed dramatically but I am Lupus free and feeling so much better.

I should tell you they treated me with meds at first but my body resisted the treatment - I had reactions to all medications, like rashes, severe headaches, etc. This DOESN'T happen to everyone so don't be affraid of the meds - it just happened this way for me, I am a rare case :)

Hope things get better for you very soon! This is a very serious disease and needs to be treated carefully. My thoughts and prayers go out to you! - A. Bostwick, Lake Stevens, WA

Hi J.! I'm a naturopathic physician, daughter of a rheumatologist (docs that specialize in diseases like lupus). We have been working together to create a blend of natural and conventional treatments to help patients deal with this difficult disease. There is new research coming out to help us understand why people get this disease and it is my belief that people will not get better if your docs do not address the cause. If you are interested in asking me more questions, send me a message. It must be so difficult to see your daughter in pain and sick. I'm so sorry!

Hi.

I'd be happy to share information with you. It had symptoms for years, but was ignored. The recommendations have all been good. I see a rheumatologist who is up-to-date and written a book in this area. When you seek out a physician, be it medical, osteopath, naturopath, etc., make sure they are familiar with and treat it. You will find some who don't, or pass you off, again, be your daughter's advocate, and move on to another medical professional who will work with you.

I have done a lot - I was diagnosed with endometriosis and thought that would solve the pain, but after 3 surgeries I was still miserable. It was a visit to a psychiatrist who Dx me with fibromyalgia, lupus and RA. I manage my symptoms through a variety of ways. Medication, diet, lifestyle, etc.

I am lucky that all my specialists work together, believe in looking at all ways to treat issues - not just prescription medications.

One key, which one person offered is controlling stress and lifestyle. I moved out of a big city and I have improved greatly. From everything going at 150 mph, to about 20 mph. My daughter also shows signs of it and has tested positive, and she loves the slower pace of life too.

Please feel free to contact me for resources, etc., or questions. Valerie

Be your daughter's best advocate. Take no prisoners ! When it comes to getting info about her condition make it known from the beginning that you want to know all there is to know and what treatments are available AND if they will work for her. Go to the National institutes of Health website ( NIH.gov), look up the disease , printout what you want to read because you will probably find way too much to read at one sitting. Learn all you can because there are so many things and patients for doctors to see that they WILL miss a few things now and again! They are human like the rest of us. Hang in there for the long haul. How do I know all this? My daughter was HIV positive for nearly 11 years without knowing; until she became critically ill neither did her primary care doctor. Who ever thinks of a married heterosexual mom ever having been exposed as a 20 year old ( the guy never knew, either- - IV drug user who never thought). She received immediate good care and is in treatment. Not a good thing to find out at a time she is raising a daughter who has Crohn's colitis. We keep informed and up to date on everything about their conditions and question doctors til they are sure we are insanely picky! Do not wait long on that referral- - if you annoy the powers that are in charge, you will get results! The un asked question never gets thought of . So! When you have a concern ,write it down in a notebook and carry it with you everywhere! Make it a priority. Keep up the good work. We pray for you now. XOXO,T. (____@____.com)

My sister has lupus, as well as fibromayalsia and rheumatoid arthritis.

I told her about you and she said to PLEASE email her at ____@____.com she had to do a lot of self educating as well and knows how frustrating it can be.

L.

Hi J.,
As a mom who was diagnosed with Lupus following the birth of my second daughter I think it is easier for me to handle the disease than to think of one of my children with it. So my heart bleeds for you.
You've been given wonderful suggestions by the people below so I won't rehash, I'll just state I've tried all the medication all the pills. My flares have ranged from the typical, painful joints and skin involvement to massive systemic breakdown with multiple organ involvement.
The number one thing for all lupies is to manage stress. It truly is a killer for those of us with this disease. After some serious life changes I have managed to shed all the medication once thought necessary for me to have a "normal" life. I still have flares but they are nothing compared to what they once were. I am able to manage a full and productive life without the medicines once needed. I do see both traditional and natural doctors and love the blend of medical knowledge that allows me this blessing of life. I have survived 15 years with the disease, mom to four, full time fairly stressful job, and wife. And at 40 I KNOW that there are another 40 plus years ahead of me.
Please contact me if you'd like to chat. There is life with lupus.
M. P

Although I don't have Lupus, I also have an autoimmune disease, Multiple Sclerosis. I was diagnosed many years ago, and I remember how frightening it is to get this kind of news. One thing that is most important is getting good information about the disease itself, and how it applies to you. There are lots of resources available. Don't be afraid to ask for a second opinion. Check in your local area for a support group. Good luck, C.

I don't have Lupus, but find that in general the Mayo Clinic has a great website with good, solid information on almost anything medically related.

I am so sorry to hear about your daughter! How old is she? I was diagnosed with Rheumatoid Arthritis almost two years ago and my greatest fear is that my kids may end up with it.

As I mentioned, I have RA which is also an autoimmune disease, but having observed the symptoms of a close friend of mine who has Lupus which is attacking the joints, both diseases seem to effect the body similarly. After I was diagnosed my doctor referred me to a rheumatologist, but my husband and I held off to do some research of our own. We decided to go with a naturopath...and I'm so glad we did! Not only did we make positive lifestyle and diet changes that benefited the whole family, but I'm happy to say that today I'm doing better then I ever thought possible (especially for not being on medication)! I do continue to take supplements, but the idea with natural medicine is to give your body what it needs to improve itself, not simply mask the symptoms and think you're ok when in reality your body is continuing to deteriorate.

I would greatly encourage you to look at all your options before making a decision. Research the long term effects of the typical medications doctors are using to treat Lupus. Meet with a naturopath first to see what their treatments would be like (I notice you've already gotten a few referrals for naturopaths close to you). I pray you make the best decision for your daughter.

My father has lupus. From what I understand it effects everyone differently and treatment varies. He was on pills for a while but now he no longer has to take them. I know it effects the immune system. Other than that I don't know anything else.

My Husband and his mother both have Lupus. What would you like to know? How old is your daughter? There are some things you can try to help with the discomfort of the arthritis and having alot of support from family is a great help too! Here is my email if you would like to talk.
J.
____@____.com

J.,
My name is A. Swift, I am from The Dalles on a ranch. I have always been very facinated with nutrition and the role it plays with health.
I have a friend with her daughter (a nurse) and grandaughter, both with lupus. Doctor did not have alot of positive solutions. She got them both on patented nutritional product about 6 years ago. Both are enjoying very good health and are symptom free from lupus.
Call if you have interest. A. Swift ###-###-####

Visit ButYouDontLookSick.com - Christine has been living with Lupus for a long time, and she runs this website to help those with Lupus, MS, and other diseases that hit your body, but aren't as understood.

Christine had a little girl last Summer, so living a *normal* life is still possible, you just have to make sure you don't run out of spoons (the site will explain).

I would contact the Children's Endocrinology Clinic at Emanual. They are excellent.

I know that Lupus is an autoimmune disorder that can be very painful and cause other problems as well. There is a product called GABA sold at GNC, where I happen to work. It works well for those with lupus. Depending on her age and weight, you would have to gauge the dosage. Check WebMD for symptoms and other treatments. I understand medical care is essential at times, but also know there are a few over the counter products that are safe and effective also. Good kuck with your search.