Wife was just diagnosed with Lupus
My Wife Nancy was just diagnosed with Lupus. Previously she was told she had Fibromialgia because of the pain and crazy sleeping hours she's been experiencing. I was not convinced and thought she had become addicted to Vicaden. She also has had a Stomach bypass for weight loss and I think that she is undernourished and dehydrated due to days and days of diarea.
But all that changes today now that we have a diagnoses. We aren't sure how we should feel about it.....primarily because we have only begun to study on the web about what Lupus is. The diagnoses came after a series of blood and stool samples were given and we got the diagnoses by phone. She is to see her rumitologist who also will have just found out. Hopefully She can get somke help to get some control back in her life./
Nancy just had her 62nd Birthday on the 25th, I am 55. I guess that's all you need to knolw for the moment. I look forward to, learning as much about this disease as I can and some tips for dealing with it in out lives.
WElcome Kevin; I am sorry that you have to be here but welcome to our little family. I am recently diagnosed myself but younger than your wife. I know that upon arriving here, I learned that not knowing quite what to make of the diagnosis at first is pretty common. Hopefully, your wife will get to see her rheumatologist soon. They may presecribe some medicines, possibly plaquinil or some steroid depending on if/what symptoms she is currently experiencing. I can tell you that the meds take time and don't necessarily solve all symptoms but that for me, thing have been better since my diagnosis and treatment (only a few months but still). In the meantime there is a terrific book for Lupus patients and their families called The Lupus Book by Dr. Wallace. Lupus is a disease that is different for every single sufferer. Dr. Wallace's book is a good overview. In addition, I have been told to try to exercise (moderately, don't overdo anything - walking is great or pool exercise), try to eat healthy, be careful about sun expossure (sunscreen, clothing, try to avoid sunniest times of day as sun may cause flares (symptoms)) and also to reduce stress. I know easier said than done but these all may contribute to symptoms so they are good to keep in mind. I hope your wife speaks to her doctors soon...and you may want to try to find a support group in your area as well. Best of luck, I hope this diagnosis brings your wife some relief. Thank you for helping her.
Welcome to our large family of the WHL and it's lovely to have you with us to find more out for your wife Nancy (Happy birthday to her and sorry it's abit late) With Lupus you can have A1 Diseases and autoimmune diseases but you do get alot of foggness to the brain besides that tiedness, i'm 42 and have had to learn to pace myself through it all. I was diagnosed myself 3yrs ago properly but was actually born with it, so for years i've had ailments and found out it was connected to my Diseases and autoimmune dieases also.
At least you actually know what's going on and with the tests she's given, when she see's her rheumo you should get more results but Lupus itself does make the bloods fluctuate badly, where Nancy may have something it can make the bloods show negative, so it came become a never ending story concerning having bloods took till a correct diagnosis is given.
There's quite a few member's on the site with fibromyalgia and who will get to you in due course.
Last edited by Peridot20_Gem; 04-27-2011 at 08:01 AM.
Hi Kevin i've added some info on Fibromyalgia to help you both to understand it more.
Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body.
The name fibromyalgia comes from three Latin words:
•'fibro' meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
•'my' meaning muscles
•'algia' meaning pain
However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:
•irritable bowel syndrome (IBS)
See Fibromyalgia – symptoms for more information.
How common is fibromyalgia?
It is estimated that fibromyalgia affects nearly 1 in 20 people across the globe. In England and Wales, there could be up to 1.76 million adults with fibromyalgia.
Anyone can develop fibromyalgia, although the condition affects more women than men. In most cases, fibromyalgia occurs between 30 and 60 years of age, but it can develop in people of any age, including children and the elderly.
Fibromyalgia can be a difficult condition to diagnose because there is no specific test and the symptoms can be similar to those of other conditions.
There is currently no cure for fibromyalgia, because the cause is unknown. However, there are a number of treatments that may ease symptoms. Treatment tends to be a combination of:
•medicines – such as antidepressants and painkillers
•talking therapies – such as counselling
•lifestyle changes – such as better sleeping habits and relaxation
In particular, exercise has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain. See Fibromyalgia – treatment for more information.
For most people, the symptoms of fibromyalgia are permanent, although they can vary in severity. There are several lifestyle changes that can help to relieve your symptoms and make your condition easier to live with. See Fibromyalgia – self help for more information and advice.
Hi Kevin. The first thing that I want to do is welcome you to WHL. I know this is a scary time for both of you. Many of us with Lupus or other AI diseases also have Fibro. Often times it actually makes the pain worse. The hardest thing about Lupus is that there is no "normal". What is "normal" for a Lupus patient. Who knows! Lupus affects each of us differently although you will usually find others here that suffer from many of the same things your wife does. The one thing I want to caution you about is the sites you will find that say they have a "cure" for Lupus. If you only do this and this or buy this or this your Lupus can be cured. Sadly it doesn't work that way. There are, however, medicines that can make us feel better and help us get back to a more normal kind of existence.
Some things that will help her to feel better is to stay out of the sun. Most (not all) of us find that the sun makes us very ill. The same can happen if we are in florescent lighting for long. If I have to go outside (even to ride in a car or for just a few minutes in the sun or an office where the florescent lighting is strong) I wear long pants, long sleeves, a hat and cover in a sunscreen of at least 50. If I do that I usually won't suffer the effects that I would otherwise.
The most important thing that both of you need to know is that Lupus is no longer a death sentence. There are meds now that can help get it under control even if it doesn't cure it. Until then we will be here for you as long as you need us!
Success is not final, failure is not fatal: it is the courage to continue that counts.
Thank you all, I have no idea really what we are in for other than weird hours, painful days, and my impatients. I'm going to have to work on the idea that we can not really plan anything because her illness could throw a wrench in any plans we make. I hope the sun thing isn't true because she LOVES the sun and it has always made her feel better abhout everything. We also do a lot of motorcycle trips in the summer. Does this Sun "allergy, for no better term" come on suddenly? She looks forward to summer and going to the water park and laying by the pool...That will be tough for her to handle if mit happens. I have been so worried about her, she sleeps so much even if she manages to go to bed at a decent hour, 12, 14 hours a day is not unussual, sometimes up to 18 hours. I don't think that's good for her so I make her get up and it's almost always a fight. She's always been dificult to awake with multiple alarm clocks that she could sleep through, being late for work often. Perhaps she has had this going on for a lot longer than we know? I am hypothyroid and I know what an effec t that had on our lives before I could get my coctail figured out...we almost got divorced over that,. it was a terrible time.
So we have been through tough times before, she was in hospital with spinal menengitis and it's awful pain and mind trips, she had MRSA that put her in hospital and nearly killed her. As recently as a month ago she had her gall bladder out and it just seems to never end. She didn't uised to be sickly, it seemks like a lot of this started after she had the rue n y (intestinal bypass for weight loss) and she lost 100 lbs. She recently picked up smoking again after having been off them foir about 5 years, says it helps her more than anything else. I've read that a lot of people have had success using pot but she doesn't even want to try it, what do you guys think. I'm sure there is a lot of help and guidance that can be had here. If it wasn't for the web I would have never been able to get my Thyroid disease under control, I'm hoping for the same kind of help again.
I guess our next step is back to the Ruemetologist and see what he has to say. It's looking like all these symptoms seem to work together, Fibro, arthritis, and now Lupus...is this all part of a whole? So tell me, do I just let her sleep her life away and hope she comes out of it????
Hi again Kevin,
The question of "does the sun allergy come on suddenly" is hard to answer. Some of us get rashes others do not. What happens most of the time is simply that we find that after we have been out in the sun without good coverage we will feel worse for several days. We find it brings on a flare or a bad time for us. I understand your thought process of "I don't think the sleeping is good for her so I make her get up" but that is the thought process you would have if you were dealing with a well person. Fatigue, major fatigue, is part of Lupus (often triggered by being out in the sunlight, stress or any of her personal "triggers"), The doctors will work with her to try and get this under control but her inability to get up isn't a choice really, it is that she really isn't able. Lupus fatigue is more than just being tired. Many here describe it differently but one of my favorite terms is that we feel like we are living under a "lead blanket". As the the combo of AI diseases the answer is yes, they do often go together. It has been found that once someone has 1 AI (Autoimmune Disease) they are open to others. Many of the people on here have what we call "overlapping diseases" which simply means multiple AI diseases going on at once. What your wife is going through is very normal.
I promise you that she feels so guilty that she is sleeping 12 to 14 hours and that she isn't able do the things she wants to do and that you want her to do. The thing that is the worst for us is when we know hour family doesn't understand or when we feel we are letting them down. That causes stress which just makes us more sick.
Please keep coming here and learning a bit about this disease. I think it will help both of you
Success is not final, failure is not fatal: it is the courage to continue that counts.
Thank you so much, , Here's a pic of her Recently when we were at the hospital for my Daughter giving birth. She's my sweety
Mari (tgal) as done an excellent description on Lupus and what it all boils down to, your both going to need alot pf patience with one another because it could take your wife to the extreme until she finally knows what else she may have (hopefully there's nothing else for her)
I have A1 Diseases over lapping autoimmune Diseases and it's not a pleasant life and it really makes you tied and Mari as put a good header on it being a lead blanket.
My husband as adapted to it well and even does alot more for me because he see's the strains it puts on my body and also mentally and the sun is wicked to my skin, i have to use 50 block when out and still sit in the shade but for some reason just after 10mins my skin starts boiling up, so your wife must be careful now incase she does break out in a flare as they can be terrible by either itching or being sore.
Last edited by Peridot20_Gem; 04-27-2011 at 03:02 PM.